Crack Me Open:

The Perks of Having a

Brain Tumor and

Detached Retina

At the Same Time

A Memoir

By Elaine Tassy

1.

Thug Wave

When my neurologist told me, during our second appointment in early 2017, “You don’t have a traumatic brain injury, but you do have a brain umor,” I felt a wave of relief. I knew something had to be wrong. I had been feeling for years like I was going crazy. Since 2015, my life had been a nightmare of personality changes and mood swings that I had not been able to make any sense of. I got lost driving around Albuquerque; I blew up at customer service people, especially when standing in lines; and I rarely socialized anymore. Sometimes my hands shook; I couldn’t concentrate long enough to fill out forms, and I was clinically depressed and planning my suicide. More shockingly, I couldn’t account for the passing of hours of time; my speech had begun to slur; I had fainted twice; a gong had gone off in my head; I had thrown up for the first time in a quarter century; I had left my car door open with the keys in it overnight, and I had been crying uncontrollably almost every day.

Before getting diagnosed, I had always been busy and active with a career in journalism, side interests in yoga and art-making, and lots of friends and travel. After graduating from college in the late 80’s, I found a few jobs on the periphery of journalism – one in research advoacay and the other in public relations, both in New York City. Then I got into a journalism internship in Washington DC in the early 90’s, which led to me getting into a year-long training program at the Los Angeles Times. From there, I worked for four years at the Baltimore Sun, and left for a fellowship at Ohio State University that gave me the credentials to teach journalism. In the summer between leaving the Baltimore Sun and starting graduate school, I went to a retreat in Massachusetts where I spent a month getting my yoga teaching certification. Once I got my Master of Arts degree, I was eligible to teach at the college level as a visiting or adjunct instructor, but not a tenure-track faculty member. I had spent about four years teaching at four year and community colleges. In 2006, while living in Philadelphia and teaching college level journalism courses, I came across a listing on a higher education employment website for a job in Nassau, The Bahamas, teaching journalism at the College of The Bahamas. I decided to apply, thinking I had nothing to lose. A dean contacted me for a telephone interview that lasted about 45 minutes. All of the visiting professorships I’d had in the past had required some kind of on-campus interview, and I was waiting to hear if I’d be invited for one. But without going onto the campus in Nassau or meeting any of my future colleagues or supervisors, I got an offer to teach journalism and communications for the 2007-08 and 2008-09 school years. I was excited for the change. Different newspaper jobs I’d had, as well as training programs and a fellowship, had allowed me to live all over the country. After working at the Baltimore Sun. I had also traveled to India, Brazil, Haiti, Senegal, Montreal and South Africa, sometimes as a volunteer, other times as an artist-in-residence.

My first semester teaching at the College of The Bahamas began in August 2007 and ended shortly before Christmas. I had saved enough money by then to go to India during the month-long Christmas break, and upon returning, I was quickly back into my routine -- going to campus to teach three classes per semester, hanging out with the friends I’d made there, many from other countries, and teaching yoga at a gym I’d joined. On Saturday April 12, 2008, all I had left to do until summer vacation began was to give my students their final exams and grade their papers. That morning, I walked from my apartment across the street for a swim – the best part of living on the beach. I walked through a sandy alley near a new hotel owned by Bob Marley’s family. An area near its beachfront hadn’t been discovered by tourists and was usually unoccupied. I went there at least once a week, and as an alternative to exercising in the gym where I taught yoga, I swam about a mile to another hotel resort and back. On the way I swam past pricey pastel-colored homes that were attached at the sides, creating a two-block long barrier with the ocean on one side, the conjoined homes in the middle, and the street on the far side.

I placed my beach cover-up and keys on a cement shelf and stepped into the ocean. I looked in the direction that I usually swam. In an isolated section two blocks long, the waves were two stories high with frothy white waves. A sailboat could not have held steady on that. Normally, the water along that stretch was chest level, but it didn’t have the same sandy shore as the rest of my swim route. Just for that segment, there was a two-story tall wall of rocks in front of the luxury properties. I’m not sure whether it was man-made, but it had a metal hand-hold at the top. The white rolling waves were violently reaching the top of the wall for the length of beach where there was no sand -- perhaps the distance of a dozen homes. Beyond that area, the waves lapped up onto the sand farther down. I thought it would be easy to swim through the high waves, which I hadn’t encountered before. Wading into the beach in front of the Marley property, I started swimming right into the two-story waves.

That decision was one of the most pivotal of my life. I was not strong enough to swim through waves that rough. Having looked at the height of the waves, I made an initial assessment that I didn’t have that far to go before I would have swum through the waves. I continued to think this for a few arm strokes. I thought about turning back but I didn’t think it was necessary. Within seconds, I was literally in way above my head. I needed to use all my strength and energy to remain above water. As I was trying to figure out whether I should give up and turn back, what felt like a pair of giant tongs grabbed me out of the water and sling-shot me hard against the two-story rock wall. The sensation of my body flying through the air without me having had anything to do with it was absolutely terrifying and surreal. I landed against it with my legs and arms; I may also have hit my head on the giant wet brown stones. I was trapped in this angry swirl, and too far into it to turn back around. I was swallowing water and could not keep my head above the thick waves. I couldn’t see which direction the beach was anymore. I thought of the many things, including the two books I was in the middle of writing, that I would never complete. I also thought how easy it would be if I accepted this was my fate and my time to die. I knew the amount of time I had left to live would be so short that I would not suffer the minute I let myself take a deep and relaxing breath under water. I could lie back and it would all be over. For some period of time, I was lost in the experience.

I saw a flat surface made of rocks. It beyond the waves, adjacent to the giant wall. If I could climb up onto it, I would at least be on solid ground, and from there I could figure out what to do. I tried to get to the rock by grabbing onto a huge hand-hold that had been built into it. Having walked along this set of rocks before, the hand-hold normally was nowhere near the level of the water. Usually, it was about fifteen feet below it, but now, it was an arm’s distance away and the only thing that would keep me from going under. I grabbed for it like it was a brass ring, and I hung onto it to keep from getting tossed again. I used that handhold to get out of the water and onto the rocks, somehow leveraging it pull myself onto the ledge. I was breathing very hard. As soon I was no longer submerged in the ocean and situated on the rocks, my legs felt like they were on fire. I looked down to see chunky blood where my skin had been. It looked like the inside of a pomegranate. There were skin flaps hanging onto my legs by a few fibers, revealing flesh and muscle. All of this was impossible for me to process.

I was beginning to go into shock. I couldn’t hear anything, and I couldn’t feel the sharp sting of goat heads or branches under my feet as I tried to walk toward the attached pastel-colored homes separating me from the street. If someone would open the door to an unannounced and bloodied wet stranger and let me walk through the front entrance of their home and leave from the back, I could reach the main street that way, and find my way back home without having to get back into the water. I knocked on the door of the closest property, a two-story pink house attached on either side to other homes. I got no answer. I couldn’t walk to the next house because the pain below my knees made me feel like I was on fire. I sat down on the rock and heard screaming – it was me, trying to breathe and catch my breath because I’d used so much energy to keep from drowning. Since I couldn’t get to the street by passing through someone’s home, I had no other choice but to get back into the water that had just tossed me against the wall of rocks and swim back.

Once I caught my breath, I got back in the water and swam for my life. The water was again another fight for which I was no match, and the amount of exertion I was putting into making it through this raging channel was more than I had ever mustered in my life. What kept me from giving up and laying back in the waves for the short amount of time that I had left before drowning was that if I never came out of the ocean alive, it might look like I had decided to wonder into the ocean to die. It would look like a suicide. I also thought about sharks. They were in the ocean, and they could smell blood. I was bleeding all over myself. As I battled my way back to my starting point, I thought sharks might be close enough to smell my blood and bite my legs off. My body could wash up on shore with my limbs bitten off, but if my friends found my keys and beach cover-up by the cement shelf and my body never surfaced because a shark had eaten me whole, I was afraid people would think I was still alive somewhere, kidnapped or being tortured. I plunged under water and swam as hard and as long as I could without coming up for air.

As exhausted as I was, I swam hard, trying to move and not think, until I lifted my head and saw the shore from which I had started. I knew I could make it from where I was, and that gave me the energy and motivation to finish. No one was around when I climbed out of the water. Often there were people swimming at that beach, but that Saturday afternoon at about 5 p.m., it was just me, walking out of the water. I looked down at my legs and saw that the skin on both of them had popped open. I saw lots of blood. I was in some altered state of consciousness as I slipped on my cover-up and grabbed my keys for the walk home. I didn’t realize that the swishing and sloshing sounds I heard were of blood collecting and puddling in my flip-flops. A few people passed me in their cars along the road, but no one stopped. That made me made me think my situation was not so serious. If it were, someone would have felt compelled to pull over.

Once I got inside, I left bloody footprints on my way into the shower. It was around then that I stopped remembering, hearing or feeling anything going on around me. In the shower I completely forgot that I’d had a near-death experience until I realized I couldn’t dry my legs without touching glistening fat cells, pink and red corpuscles and other gross stuff oozing out of them. I found myself dressed in a mini-skirt and sitting on the couch, looking into my left leg, the worse of the two. It was split open several inches deep and a few feet long, like someone had dissected it to examine my leg bone. I could see flesh, muscles and fascia.

I sat on the couch with my leg extended, feeling like I was in the middle of an outer-body experience. I didn’t know what to do or how to feel. I wonder if I have some Band-Aids? I thought as I sat paralyzed on the couch. Maybe I need to go to the hospital, I mused. I began calling my nearest friends and co-workers. Starting with Paul, an Englishman who taught physical education at the College of the Bahamas. He lived in the apartment below mine. He’d given me a tour of the island when I first arrived and had helped me get adjusted to the town and the campus. I looked outside my living room window and noticed that his car wasn’t in the lot. The college librarian, Kathy and the music instructor, Christine, were also and neighbors and American faculty members who’d begun at the school at the same time as I did. They both lived in an apartment building around the corner from mine. Kathy couldn’t be reached, and I didn’t know her well enough to surprise her with a message about the reason I was calling. Christine and I had gotten to hang out more and we knew each other much better. A mid-Westerner about my age who played the flute in a local orchestra, she’d been to the art studio I had rented in town, had come to the yoga class I taught at the local gym, and we had hung out at the beach, each other’s apartments and out and about town together, sometimes with the school’s administrative assistant, Bridgette, many times. In the voicemail I left Christine, I heard myself talking, but I didn’t understand what I was saying. I was speaking but not necessarily with words that existed in the English language. Then I tried my office-mate Shaniqua, who lived about a mile away. She was a native Bahamian I also hung out with a lot in my spare time, with whom I would remain friends years later. Shaniqua wasn’t home either. I didn’t press my luck leaving her a voice mail, seeing how I’d performed the last time I’d tried to after calling Christine.

Finally, I became more and more concerned about how my legs looked. There was also a gash on my right elbow dripping blood. I called my friend Brenda, whose apartment was downtown, very near the hospital. She was the last of my choices because if she were to come all the way from downtown, I might as well have driven myself. But I couldn’t do that, because I found it impossible to find the motivation to move. Brenda was an African-American woman a few years older than me who’d moved to the Bahamas from Detroit about five years before. One of my friends who was a mutual acquaintance had given me her e-mail before I’d left Philadelphia, and she was one of few black American women I met who lived in Nassau. A few weeks before, we had gone to a party at the same Bob Marley hotel from where I had begun swimming. When she answered the phone, I vaguely, matter-of-factly told her that I’d cut myself swimming and asked if she could come give me her opinion about whether I needed to go to the hospital. I sat still until she came over so as not to look at the extrudate bubbling up from the leg slit several feet long. I could have buried several fingers into the wounds on both of my legs and on my right knee.

When Brenda showed up she did a double-take at my leg. “Girl!” she shouted in surprise. “I woulda been gone!” I didn’t know what that meant and looked at her blankly. I understood each word separately, but I was having trouble making any sense of any sounds. Brenda looked at me and explained that she wouldn’t have been waiting for someone to assess the situation because if she were the person in the situation, it would already have assessed itself. She didn’t understand why I was sitting on the couch and not hurrying to get in her car the way a person with flesh hanging off themselves typically would. When she told me to wrap my leg in a blanket and get into her car immediately, I realized I was having a crisis. I was in a trance the whole way to the hospital, which I interrupted to tell Brenda that I might start crying. “Child please,” she said, surprised I hadn’t already. “You cry all you need to. Do whatever you need to do.”

On the way to the hospital, the music instructor Christine called me back on my cell phone and said that she could hardly understand anything I’d said in the voice message I’d left. “What’s going on?” she asked.

“Oh, I got into a fight with an ocean wave and lost.” I could not stop laughing, until I started laughing and crying at the same time. Soon after that, this incident took on a title of its own: The Thug Wave. Brenda got me out of her car and as we entered the downtown St. Margaret’s Hospital, also painted pink, I thought we’d be in and out of the ER in a half hour. I had plans that night which I assumed I’d be keeping, as did Brenda, so I convinced myself that after a few needed stitches we’d both get on with our nights. 

That turned out not to be the case. The nurse practitioner took one look at me and excused himself. He called the island’s main reconstructive plastic surgeon, Dr. Srikanth Garikaparthi, who was reached at a barbecue he was attending about 40 minutes away. Originally from India, Dr. Garikaparthi showed up in jeans and a t-shirt and immediately took control of the situation. He was 18 months younger than me, with straight black hair with a receding hairline. When I met him, I felt I was dealing with someone older. He acted rational and wiser and more mature than anyone in the room as he asked me the gist of what had happened. As soon as he started speaking with me, I realized I probably wasn’t going out that night.

First, he asked me some questions about my general health, and he guessed my weight. I could tell he was making mental calculations about what to do with me. Because I’d eaten in the last twelve hours, he gave me two options: I could either be admitted to the hospital right that minute, and then, in eight hours, he would perform reconstructive plastic surgery under general anesthesia. Otherwise, he could do the surgery right away, with me under local anesthesia. It didn’t take a minute to make up my mind. Although he said he would give me sedating medication for the eight hours, I didn’t want to be in the hospital alone, and I didn’t think I’d fall asleep, even if heavily tranquilized. I chose immediate surgery with local anesthesia. He scrubbed up, and, with the help of the nurse practitioner, positioned me on an examining table to get started. Brenda took a seat in the room to support me throughout the night.

I noticed how perplexed Dr. Garikaparthi seemed when confronted with the project of closing the jagged openings in my flesh. He walked around the exam table to get a full scope of the wounds from different angles, as if unsure where to start. I was lying on the table with my arm up over my eyes, but from time to time I looked at him. He began by taking pictures of my wounds with a digital camera for the insurance company. Then he gave me shots of local anesthesia. When he figured that I must have been good and numb, he scrubbed my leg wound, which was about two feet long and wrapped around my left calf. He used the bristles of the sort of giant scrub brush like those used to sweep up elephant shit at the circus.

“You’re hurting me!” I screamed. He had no reaction whatsoever; he just kept scrubbing. I had not given any thought to the fact that this would be painful “Don’t you care that you are hurting me?”

“Of course I care that I’m hurting you,” he said gently, and continued scrubbing. Then he got started with the project of stitching me up. This took hours. At one point, several hours in, Brenda asked him if he had put in 100 stitches yet.

“One hundred? Oh I’m way past one hundred,” he said. It was around then that I began to appreciate the seriousness of this situation. He often stopped and looked at the whole of my legs and arms and took such a deep breath I could see his posture change. Hour after hour, he worked in silence while I tried to remain still and not scream. At one point he was standing at the foot of the table working on the two-foot long gash that required multiple levels of stitches, pulling together some flesh before reconnecting many layers of skin. “I’m in a perfect position for you to kick me now,” he said offhandedly. “I ask that you don’t.”  That made me laugh, and when I looked around my bloody leg at him, he looked pleased to have been able to lighten the mood.

Brenda, who had been standing up beside me for hours, holding my hand, was struggling with this process, probably more than I was since I had an arm over my face and she did not. She was squeezing my hand so hard that it distracted me from the pain of the fire down below. At one point she came close to fainting, which I didn’t notice until Dr. Garikaparthi politely suggested that she go sit down if she was feeling like she was about to pass out. Christine called while I was on the operating table. Brenda answered my cell phone. “She’s taking it like a big girl,” I heard her say.

I was being very quiet and felt at times distanced, but inside I couldn’t believe this was happening, and I was losing my mind and freaking out. At one point I could no longer contain myself and I screamed to the nurse practitioner, “Someone needs to go into the cupboard and find me a fistful of Xanax!” He stood there unmoving. I glared at him, wondering why he wasn’t doing as I said. I didn’t consider the fact that there probably wasn’t a cupboard in the ER stocked with a vat of Xanax he could have stuck his fist into. While I was on the operating table, I found my numb zone, a place beyond anxiety where I was bordering on dissociating. That’s where I spent most of that night and early morning while Dr. Garikaparthi put several levels of stitches into me, some of them kelly green in color. Finally done with the wound on my left calf, he approached the one on my right knee, which looked like someone had cut my skin off on three sides in a three-inch square, leaving just one side attached. It was several shades of red and pink, bubbly, with yellow speckles. He checked the instruments he had at his disposal and selected a hook with a long metal handle. He attached it to the flap of skin hanging off my knee to pull the whole chunk of my flesh across my right knee and back into position. “That feels terrible!” I said loudly.

Dr. Garikaparthi asked, “Does it hurt, or does it just feel terrible?” I repeated to him that the tugging felt terrible. Since I didn’t confirm that it actually hurt, he kept tugging. It was the worst isolated sensation of the procedure. He looked at that knee wound for a while once he was done with the hook. He frowned at it, tilting his chin in several angles, as if deciding what to do next. That wound alone required about an hour to close.

Daylight broke by the time he finished closing all the wounds. Some stitches would self-dissolve; others were angry black star-shaped knots along the lines of the wounds which he’d take out a few weeks later. He wrapped my left calf up from foot to knee in layers of gauze. The nurse practitioner put me in a wheelchair and Brenda put me back in her car and took me home.

I felt drained, beaten, exhausted, in extreme pain in my legs. To get inside I had to climb a wrought iron circular staircase. Walking up, it felt possible that the stitches holding together the two-foot long gash could come apart, exposing the flesh innards, the sight of which I had not been able to get out of my mind and planned never to see again. Brenda got me situated and made sure I felt safe and OK. When she left, I got in bed and mainly stayed there for the next few days, watching episodes of “Law & Order: SVU,” sometimes three in a row, and true crime shows like “48 Hours” and “Dateline.” I had seen them before, but they all seemed new. It felt like my legs were on fire whenever I stood up, so I was mostly in my bed. My co-workers and friends heard about what happened from Christine, and many of them came by to check on me or bring me food. I called the department chair and she arranged for another instructor to give my students their finals and bring them to my apartment to grade.

I really didn’t want for anything while I was healing. Shaniqua, my office mate at the College of The Bahamas, came over and washed my dishes and cleaned up my kitchen. Christine took my bed sheets, which got bloody from seepage from the dressing, to the basement Laundromat and washed them for me. The librarian, Kathy, bought me over some books I’d never read to keep me occupied, and Bridgette, a college administrative assistant I hung out with on weekends with Christine sometimes, came over to play the card game “Concentration.” I usually won that game, but when we played about a week after the Thug Wave, I was completely unable to concentrate. I made only two matches -- the second to last. and the last. I attributed this slow brain function to the trauma of the accident.

I called my mother to tell her what happened. She seemed concerned during the first conversation, but never called me again. When I asked her why, she said that it had cost her $38 dollars the first and only time she called me from New Jersey in the Bahamas – back in August when I first arrived. When I told her in a subsequent telephone conversation that it hurt my feelings that she didn’t call again to check on me, she said I had told her that I had friends and a nice doctor looking out for me. My response let her know that wasn’t a satisfactory answer, so she hung up on me and didn’t call me for the remainder of my recovery period. Her unconcerned response to a trauma, like the experience of the Thug Wave itself, was a dress rehearsal for what would occur years later.

My leg was wrapped up for a few weeks in gauze from knee to ankle. When I went to Dr. Garikaparthi’s office to get the dressing removed, I got home looking like the Bride of Frankenstein. The dressing was now off, but my leg was basically green with bruising, with jagged gashes highlighted with what looked like black spiders crawling up them. Those were the stitches. Paul, my downstairs neighbor, stopped in to check on me from time to time, and the first time he glanced at my unwrapped leg, he grimaced and turned away. I was always hungry because I needed extra calories to fuel the recovery process. One day I ordered a pizza and ate the whole pie. I imagined the horror of unzipping of the two-foot wound with too much activity, which caused me to use one leg and both arms on the railing to go down the stairs. I limited my activities to only the essentials. 

When I went to get my stitches removed, Dr. Garikaparthi saw how my jagged scars were healing and said, “I would take that result any day,” he said. “Any day.” He mentioned that between our last visit, when he had removed the dressing, and that day, when he took the stitches out, he had gone to the area where I told him the accident happened, to have a look for himself. “That’s not a beach, you know,” he told me. “That’s not an area for swimming. That’s not safe.” I couldn’t believe he had gone there to check the area out. I was so touched that he would use his free time to investigate where the accident happened that I used his name in a novel I had been working on at the time of the accident, when it was published a few years later, the one I was thinking I would never complete if I lay back in the ocean and allowed myself to drown.

The Thug Wave experience -- overnight reconstructive surgery, the multiple levels of stiches, graphic wound dressing changes, the fear of the wound sliding open like a zipper at the crotch on a tight pair of pants, the searing pain, and turning my life over to the instructions of a health care professional and being immobilized and stuck at home – was a primer for the brain tumor I’d be diagnosed with nine years later.

            At the end of the summer, I left the Bahamas and moved to New Jersey. Although I had been hired for two years, I lost interest in completing my contract around the time of my accident, and while laying around wating for the stitches to heal in my sweltering Bahamas apartment, I began looking for other positions, using the same website I’d used to find the job at the College of The Bahamas. I had gotten a year-long visiting professorship in journalism at Rider University in Lawrenceville, New Jersey. It was in the English department, teaching journalism classes. I was excited for the experience, because I had participated in a high school journalism internship on that very campus in the early 1980’s, when first developing an interest in reporting as a member of my high school newspaper staff.

I moved in August, just in time to find an apartment and buy a used car. The scars on my knee were all but non-existant, but the scars on my legs and arms were extreme.

While teaching there for the 2008-2009 school year, I found a dermatologist not far from campus. Once the wounds healed, the many scars began to protrude from my skin, easily ¼ of an inch deep. I looked like a narrow black garden snake had attached itself to my left calf. The dermatologist gave me injections of steroids that broke down the excessive scar tissue. He also gave me an ointment to rub on my legs, which contained the same steroid as was in the injections, to help with the discoloration.

By the time my first and only school year at Rider University was over, in May 2009, I thought the Thug Wave was behind me. The shiny, rippled scars on my legs, although still noticeable, were now flat and pain-free. The injections I’d gone to the dermatologist for had completely flattened the scars from the wounds, and it had been my impression that the only wound I had suffered was to my flesh. I hadn’t given much thought to the experience until one afternoon when I was practicing yoga in my apartment in Lambertville, New Jersey, about 30 minutes away from the campus I had taught on that year. I was doing a pose on my back with my left knee bent in toward my chest, when suddenly my knee locked up and I could hardly straighten it. One moment I was fine; the next moment my knee swelled to twice its size.  I went to a local ER in terrible pain, thinking I was going to need some care there that would wrap up whatever problem I was having. To my dismay, the ER nurse gently told me that what I had going on with my knee was not something that an ER doctor could help me with. She gave me a pair of crutches, and as she was adjusting them to my height, she told me that I would have to see an orthopedic surgeon.

That left me feeling shocked and horrified. Nothing had even happened to me besides me bending my knee on my yoga mat, and now I was off to another surgeon. New to the area, I didn’t know who to ask for a recommendation, so I looked in the phone book and found an orthopedic surgeon in the next town over, Doylestown, Pennsylvania, just over a short bridge.

Dr. Whitaker was a warm and kind older man who wasted no time getting down to business. He did some manual manipulations and asked me a few questions about recent injuries. I didn’t make the connection to the Thug Wave, and I said I had not had any. But soon I learned what was going on with my knee was connected to what had happened in the ocean, my most recent injury, about which I had been trying to forget. My knee was so swollen that I could hardly move it when he inserted a syringe to extract over a cupful of liquid that looked like apple juice, which meant the swelling was related to an old injury. If it had looked like tomato juice, he said, that would mean I had a new injury. When I told him about the ocean incident, not thinking initially that the two could be related, Dr. Whitaker concluded that a chunk of my kneecap had broken off when I hit the rocks, and that it had lodged itself somewhere in my knee orbit. My yoga practice had apparently unearthed it, freeing it to float around where it did not belong. It only took him a second to locate and isolate the fragment between his fingers and jiggle it. I guessed it was an inch square and a half centimeter thick. It would have to be removed with arthroscopic surgery, using minimally invasive instruments.

“Can’t we just leave it in there?” I asked.

“Absolutely.” The doctor nodded. “You’ll just run the risk for the rest of your life of the fragment lodging somewhere else and locking your knee into whatever position it’s in at the time.”

“Oh.”

“So shall we set you up?” I was onboarded for outpatient arthroscopic surgery for June 9, 2009, the day before my 42st birthday.

This was dizzying, shocking information. I was in so much pain, and the only way to get rid of it would be an operation. Fortunately, the school year at Rider had just ended, so I didn’t worry about having to go to campus, but I had booked my first solo art exhibit for June at the Interfaith church in the same town as Dr. Whitaker’s office, and the opening was around the same day as the operation. I had intended to hang about two dozen pieces in this large space I had already gone to see. Around the time of the surgery, I was so weak and discombobulated that the exhibition curator came to pick up my work and hang it up herself, since I wasn’t strong enough to do it.

I had become friends with my downstairs neighbor, a surgical rep who had gone to the hospital I’d be going to many times, to sell doctors equipment for bladder surgery. She and I were both single, cat lovers, close in age, and we had hung out together some since I had moved into the loft apartment above hers before the school year had begun. She agreed to take me to the surgery, just as she had shortly after I had moved in. On election day, the day that Barack Obama had been elected, I had had Lasik surgery, and since she was the only friend I’d made, she said she could give me a ride for the procedure, which had eradicated my nearsightedness and astigmatism in less than an hour.

The upcoming surgery was a bit more complicated, but didn’t take much time. We arrived at the hospital in the morning and I was out that afternoon. The arthrascopic surgery under general anesthesia was done with miniature, retractable instruments and a tiny camera. Much less invasive than normal knee surgery, it left me with just three pinhole scars where the instruments had been inserted around my left knee. I didn’t have stitches or big scars like I’d gotten in the Bahamas.

The recovery period took me the whole summer. I spent hours on the couch watching re-runs of “King of Queens” as well as some true crime shows. I became addicted to the sit-com, which I’d never much cared about before, and was on my couch with snacks and beverages on my coffee table and 5:59 pm every night for months. For my knee to heal, I had to wear a knee immobilizer strapped with Velcro from my mid-thigh to my calf, even while sleeping. After the surgery, Dr. Whitaker had submitted the fragment, which I called Mystery Meat, to the pathology department, and they confirmed it was in fact a fragment of kneecap.

When I stopped wearing the knee immobilizer, my leg remained stuck in a tent shape. By taking walks, painful at first, my muscles straightened out over time. About six weeks after the surgery, Dr. Whitaker drained my knee of fluids that built back up. By the end of the summer I could walk normally, and the pain eventually went away completely.

Chapter 2

Symptoms

Around the time I had the knee surgery in 2009, the journalism industry was tanking, with no jobs to be had. There was no point in teaching college students to be reporters, and I was thinking about a new career. And after the Thug Wave and the knee surgery, I’d received so much medical attention that I started thinking maybe health care would be worth considering. Taking care of people recovering from trauma seemed like a good fit for me, something I could do if I became a nurse. I decided to move to Albuquerque and enroll in nursing school in the southwest. I’d been there a few times before and knew I could make it work for the duration of nursing school studies. So I drove to Albuquerque with a carload of my belongs over a week and moved into a furnished rental in time for Spring 2010 classes at Central New Mexico Community College. It took three semesters to complete prerequisites in biology, chemistry, anatomy and physiology, psychology, statistics and pathophysiology.  

A woman named Christy, who was about my age, showed up in many of my classes. She was planning to become a physical therapist and had to take similar prerequisite classes. We got to know each other and soon began studying together at her house or mine, building a friendship over memorizing bones and muscles. Another friend I connected with was the sister of my friend Brenda, who had held my hand through the Thug Wave surgery. Brenda’s sister Janet and her family lived in Albuquerque and Brenda had put me in touch with them. The first time Janet and I met for drinks, she said, “So Brenda told me to ask you about the Thug Wave.”

When I completed the pre-nursing classes and began the four-semester nursing program, my brain tumor was probably five years in the making, and about half the size it was when removed. I did well with all of the academic prerequisites, but once I started the nursing program, I struggled to remember steps in doing the hands on skills nurses had to know: creating a sterile field, inserting a catheter, or taking blood pressure – all skills we practiced on dummies in nursing school classrooms. When we were tested I got anxious and could not perform. One day, instructors tested us on doing a patient assessment which included forty tasks, such as listening to the heart and lungs, taking the patient’s temperature, and checking for pupil dilation. If a student omitted certain steps, that was an immediate failure, and the student would be told to leave that minute. I forgot to ask the student acting as my patient if she was in pain. The nursing instructor asked me if I was done; I said yes; she told me I’d done well on listening to her lungs, but since I hadn’t asked if the patient was in pain, I had failed the assessment and failed out of the program, and I should clean out my locker and go. Having always done well in school, that was a real red flag.

I didn’t know anything was wrong with my brain at that time. I had never failed academically before, and I had confidence I could complete a nursing program, so I applied to and got into a similar training, one hour north at Santa Fe Community College. There, I found myself experiencing crippling anxiety so severe that I drank shot bottles of gin or vodka poured into Diet 7-Up cans during lectures and labs. I could not force myself to practice skills in the lab, and whenever I shadowed nurses through corridors of Christus St. Vincent Hospital, trying to keep patients’ vital signs in my head, I felt confused and overwhelmed.

While I was living in Santa Fe, I made a new friend named Yahya, who was in his 20s and from East Jerusalem. As unlikely of a friendship pair as we were, we had a lot of fun together. He was the manager of a hookah shop that wasn’t very busy at night, and he was also a student in a pharmacy technology program at a local college. Sometimes when I went in there, he was studying in the hookah lounge when there weren’t customers. I began studying there with him at night because concentrating and studying on campus or at home had become very hard for me. One night when we were the only people there, his phone rang. While he was outside talking, two male strangers got out of a car with the intention of robbing him of the $700 cash he had in his pocket. Instead, they stabbed him once in the abdomen before even asking for the money. When he began calling my name for help, the assailants fled. He rushed inside and said, “They stabbed me!” I saw him fall to the floor in the hookah shop, then go into the bathroom. He was gray when he came out, but there was very little blood, and because I had been inside, unable to hear anything, I didn’t know the extent of the injury. He held his hand filled with tissues at his abdomen. “Can you take me to the hospital?” he gasped.

It was a terrifying drive to the ER because my cell phone wasn’t working so I couldn’t alert the hospital, and I hadn’t brought my glasses with me and didn’t know my way around town in darkness. At some points I was going through red lights and driving on the wrong side of the road, honking the horn and screaming with half my body in the car and half out the window. On the way to the same hospital where I was being trained as a nurse, he said, “I don’t think I’m going to make it.” I pretended everything was fine, insisting that he continue talking with me through the dark streets. Suddenly he went silent. He turned green and became sweaty, and he shrank in size. I was terrified that a trip that began with me taking my friend to the hospital could wrap up with me arriving at the ER with a corpse. The silence was deafening. I didn’t know what to do. But then he came back to life, and when I got him to the hospital he had a 10% chance of survival. He spent 29 days in the hospital, about half of it in intensive care. I checked on him nearly every day and helped his mother and other relatives who didn’t speak English fluently to understand how a major artery was severed and that blood had been flown in from all over the state, that the ER doctor had to keep her finger in his vena cava until it arrived or he would have bled to death. Relatives of his flew in California and Palestine, and he lost weight and looked green and fragile. In the hospital his siblings visited often; his mother slept there nearly every night. He lost one kidney, but made a miraculous recovery, with his body developing new veins and arteries to do the job of the one that had been pierced.  

Because of Yahya’s stabbing, concentrating on nursing school was even harder than before. I lasted in the Santa Fe Community College nursing school program for three months before getting dismissed again – this time for behaviors demonstrating my inability to focus: showing up with cat hair on my uniform, wearing dangling earrings rather than studs, leaving paperwork documenting patient encounters undone, accidentally sticking a woman in the face with a thermometer while trying to put it in her mouth, and asking her if she was pregnant when she wasn’t, among other infractions.

With no other reason to remain in Santa Fe, I moved back to Albuquerque in the beginning of 2013, and began looking for jobs. One of the places I applied to was at the Albuquerque Journal. I sent in a cover letter and resume with some writing samples, asking the City Editor if he had any reporting openings.  It just so happened that there was an opening for a social services reporter. The city editor called me to come in for an interview and I began working there in April, 2013.

I spent about six months covering social services, then I got transferred to the features department. Working there, I began to have headaches so painful that sometimes I went straight to bed after work. I felt easily irritated and got upset about any negative feedback from my editors. One day in January, 2015, I went to my doctor and explained how I was feeling. She listened to me describe a typical day and seemed aghast at how much pain I was in. I left her office with a letter that started the process a three-month medical leave of absence. Once it started, gone was the motivated high-achiever who always had something to do, in her place was a sloth. I got up if and when I wanted to, which I usually didn’t. I slept all the time and began isolating myself nearly completely. Tasks like paperwork caused me to shake and I had to go lay down. My leave started around the time Bobbi Kristina Brown went into a coma, and that was the only news I followed – anything more complex didn’t stick in my head. I had no idea what I did to fill the time for weeks and months until December, 2015, around which time I became so depressed that I made a suicide plan. Since childhood, I’d dealt with depression and anxiety because I grew up in a very violent, abusive and unsafe environment. I had been diagnosed with chronic post-traumatic stress disorder years before, which I managed with medication, yoga, exercise and therapy. I still took the mood stabilizer Wellbutrin and went to therapy every week, but I could no longer conquer the emotional lows, nor could I concentrate enough to practice yoga or medication.

While working at the Albuquerque Journal,po;l;popppp I’d heard of the Final Exit Network on a PBS documentary. The organization helped people commit suicide by bringing to the client’s home a tank of helium gas, rented from a party supply store such as Party City. As soon as the patient passed away, the Final Exit staffer called the police from a blocked number to say that a dead body was at a certain location. I called the Final Exit Network to schedule my final exit. I described my situation in a voicemail and the woman who called me back a few days later said that the policy had changed; now, the organization only helped terminally ill patients whose doctor had put in writing an estimated length of time they had to live.

I talked about my suicidal ideation with my therapist and a few friends, including Lesley, a classmate from Wesleyan University who’d dealt with chronic pain and depression for many years. She Facetimed me from a family holiday vacation to continue talking me out of it, telling me I’d feel better after the holidays and a lot of people, including her, would be devastated if I killed myself.  I didn’t have the nerve.

I never returned to the Journal after my leave of absence. To survive, I had to cash out small portions of my 401K, and I worked for about 10 hours a week doing craniosacral therapy, a form of bodywork that restores balance to the central nervous system, out of a spare bedroom in my house. Business was slow and I could only endure minimal interaction anyway. Most months, I didn’t earn quite enough to pay my mortgage and bills. Doing anything more than I was doing took much energy, and I spent a lot of time crying in bed.

Things got worse in coming months, when I could no longer bear to stand in lines without feeling like I was going to start screaming and freaking out. My home, my neighbor’s living room couch, the nearby park, my 24-hour gym at off-peak times and the Panera in my neighborhood were the only places I could be. In my spare time, of which I had plenty, I began using social media to attack people who had displeased me. I found on Facebook a guy I’d had a bad dating experience during a college internship when I had lived in a New York University dorm. I sent him daily snarky messages which he ignored, until I called him an ass-wipe used by someone on an all-barbeque diet, to which he replied with Bible verses and a request for my forgiveness.  I also confronted a middle school classmate who in the late 70s had ridden his bike up alongside mine and grabbed my breast. Via Facebook I demanded an apology. He didn’t remember and asked whether I was sure it was him, to which I replied that if he didn’t take responsibility I might to break into his barber shop and fuck it up. A friend of a family member sent me a friend request on Facebook and I told her to go fuck herself. Normally an avid reader, I could not read a book for more than five minutes without realizing with frustration that I couldn’t keep track of what was going on.

In the fall of 2016, with no improvement to the uncontrollable crying, intense impatience, and major depression, my therapist talked me into going to Lovelace Behavioral Health, a new mental health ward on part of one of Albuquerque’s three major hospitals, located a few miles from my house. She thought this program would offer enough extra individual and group therapy to allow me to function again. That facility was in fact an emergency ward for those who’d recently made suicidal gestures or presented a potential harm to themselves or others. I was out of control with my emotions and unsolicited opinions there, going off on people whenever I felt like it. I snapped at a nurse, and at a patient -- a man who lay in his bed masturbating and yelling at imaginary people all day. Unwilling or unable to censor myself, I asked him why he couldn’t shut his pie hole. He had the right to talk to people, he told me, even if they weren’t there, he said. I went in my pajamas to group therapy and observed for a few minutes from the hall. The session involved the patients, all of whom were locked into this ward with me 24 hours a day, finding a color on a piece of cardboard and matching it with a disc of the same color. We were not allowed to go outside. The therapy was offered by graduate student in social work who met with patients in sitting areas to discuss post-discharge life plans. Since I had voluntarily checked in, I knew I could check out once I saw the psychiatrist -- a contracted worker who came in most days for a few hours. He suggested a different prescription and an immediate check-out. I came home feeling more lost, anxious and out-of-control than before, still convinced I needed to try harder to get myself under control.

Four days after I got out of the hospital, I had a minor car accident in the parking lot of the Panera bakery, where I went a few times a week with my laptop because I couldn’t concentrate on it at home. A college student had pulled out of a parking space I was waiting for, without checking his mirror. My car wouldn’t start a few days later. I had it towed to my mechanic who said the collision had destroyed the engine and that the car was totaled. He offered to buy it from me for $250 toward another car he sold me a white PT Cruiser with 150,000 miles on it for $1,600. I didn’t have time to shop around; I just bought it. The accident left me in tremendous physical pain, It must also have jostled the tumor I was not yet aware of in such a way that it could no longer be ignored. Managing my patience and emotions became more difficult thereafter, especially in the office of the chiropractor I went to because of the car accident. The woman at the front desk had a shrill voice and a hysterical degree of enthusiasm when she gave me pages and pages of intake forms. Within minutes I felt like I would explode like a piñata. Can I sneak out of here? I can’t answer any more of these questions. If this woman doesn’t stop freaking me out over these forms I will kill her. I returned three double-sided pages incomplete, thinking I’d given enough information but she said, “You’re not even halfway done with this!” and gave it back to me. I was sweating and anxious when the chiropractor called me in. He wore his balding grey hair in a short ponytail and had on a puka necklace and a dashiki. As he treated me, he volunteered anecdotes about taking his grandson to the park, presuming I wanted to listen while I was trapped on his table. I found this so burdensome that I got disoriented and needed to regroup when I got home.

My instability kept getting worse: whenever I tried to fill out forms, I could do it for maybe ten minutes before I started crying or my hands started shaking. My therapist, still unsure how to help me, referred me to a month-long intensive half-day outpatient program that included one-on-one therapy, group therapy, acupuncture and other treatments. I had to stop working with her to enroll in the program. But a few days before the month-long program began, it got cancelled, by which time my therapist had given my time slot to someone else.

One evening I went to a Starbucks, thinking I could concentrate on my laptop. When I was ready to leave, I couldn’t find my keys. I unlocked the car door with a spare key in my wallet. My keys weren’t inside the car, and I was stumped because there was nowhere else they could be. Then, driving home, I heard a clanking noise against the passenger’s side door, and at a stoplight, a truckdriver honked and pointed at the keys dangling outside the car. I must have unlocked the passenger side door at Starbucks when I took my laptop out and left the keys in door the whole time. Another time, I went outside after being unable to find my keys anywhere in my house, and finally I saw them in the driver’s side keyhole in my driveway. They had been there the whole night. Another time I went outside to see I had left the car door open all night. Several times I requested cash back after paying for something with my debit card at a U-Scan and left the cash behind.

In New Mexico, medical marijuana became legal in the 2010’s and I had obtained a medical card in 2015. One December day in 2016 I was in line at a dispensary that wasn’t moving and I absolutely lost it. “Can somebody help me?!” I screamed to a room full of people. I was shocked and embarrassed to hear myself yelling. A customer, unwashed with no underwear and her foot in a dirty cast, snapped that she was in a cast but able to be patient, so what was my problem? I tried to respond, but she didn’t want to hear it. I cried most of the drive home and stayed till on the couch to regain some balance. In such instances I felt I couldn’t censor my irrational reactions. Another time as I tried to park at a neighborhood supermarket, a man parking next to me indicated I wasn’t giving him enough space with a finger motion, but after realizing there was plenty of space for both of us, he waved at me in apology. What looked like me getting ready to wave back turned into me throwing up my middle finger. His face went from blank to perplexed, and I felt guilty immediately. I didn’t want to leave my car next to his, in case he would slash my tires, so I looked for a spot somewhere else. Another driver pulled into the spot, narrowly beating me to it, so that person got the finger as well. 

It was around that time that I couldn’t remember whole chunks of conversations with friends who recited back to me things that I told them. Whenever this happened, I thought, Oh, well, I’m in my late forties. Maybe I need some ginko biloba to help me with my memory problems.

But there were things I could not ignore or attribute to something like age or irritability. One night when I was sitting on the arm of the leather couch in my living room when I experienced what felt like a loud gong crashing inside my head. Then my head vibrated for a few seconds. This was shocking and I didn’t have the words to describe it or the ability to process it. By not telling anyone or thinking about it, I somehow I convinced myself it wasn’t a part of the growing list of many odd things happening. Neither was an experience with throwing up. Around that same time, I started crying so hard that I sometimes became sick to my stomach and once, I projectile vomited across the room, spraying a swath of orange puke onto my rug. The last time I had vomited was in 1984, after a room-to-room drinking party during my freshman year of college. I found myself shocked again. I had never cleaned up my own vomit before and didn’t know how, so I rolled up the carpet and put it on the sidewalk.

All of these things – the shaking, the crying, the vomiting, the raging, the gong, the mental hospital visit – seemed like isolated incidents in a life no longer worth living, not parts of a larger and inter-related problem. I began seeing a new therapist in late 2016. Her name was Karee, and her office was near my house – just a few turns in a two or three-mile trip that didn’t require I get on the highway. On my way to her office for one of our first appointments, I got lost twice. By the time I made all the necessary turns to self-correct, I was about 20 minutes late for a 60-minute session. The first time was not unusual, but it happened regularly, and was not going unnoticed. In her January 12, 2017 treatment notes, Karee wrote: “Client is overwhelmed with severe anxious thoughts.” She described my general appearance as “disheveled,” my manner of dress as “eccentric,” my motor activity as “retarded,” and my insight and judgment as “poor.” She noted my family history and past diagnosis of post-traumatic stress disorder. She included details about my mood: “Persistent negative emotional state (depressed, angry mood, shame), feelings of detachment from others, persistent inability to experience positive emotions, irritable and angry behavior (verbal aggression), reckless, hypervigilance, exaggerated startle response.” She also wrote that I had lost interest in most activities, felt worthless and depressed, stayed in best most of the day, and struggled to make decisions. She concluded: “Symptoms cause significant distress and undermine efforts to work, go to school, and generally address activities of daily life.”

I got lost on my way to her office for my next appointment as well. When I finally showed up, Karee said she had observed that besides repeatedly getting lost, I was slurring my words, talking extremely slowly, and not being able to find the words I needed. Those things, added to my sense of overall confusion throughout any given appointment, made her think I might have a traumatic brain injury (TBI). She suggested I got an MRI, which would scan my brain and see if anything looked wrong. I was relieved that she suggested this to me, because it validated the loss of control I’d been feeling, particularly since the car accident. It also drowned out the voice inside me that said I was lazy and, if not completely faking, not trying hard enough to function. I started calling neurologists right away. The first two said there’d be a two-month wait. On my third or fourth call I found a doctor who could see me the third week of February.

It was increasingly difficult to have nothing going on day after day, week after week. Most of the time I was busy sleeping so I didn’t notice, but other times I felt like I had to at least leave my house for reasons besides buying medical marijuana. So while waiting for my first appointment with a neurologist, I approached a few different organizations to see whether I could display my artwork at their spaces. While working at the Journal, I had booked two solo shows, but since then I had only had a few pieces included in group shows. I thought that if I booked an exhibit somewhere, I would feel that I was still connected to the world somehow. One place I approached was called Cien Aguas International School. I had walked my two shelter rescue mutts past the school I often saw the principal directing parking lot traffic. I drove by one day to ask him if I could display in the lobby some of the artwork I’d made. Because it was an international school, I suggested displaying artwork that referenced my trips to Haiti, Senegal and Brazil. He was enthusiastic and suggested I set it up through the art teacher.

After exchanging emails, art teacher Valeria Rios from Argentina and I spoke on the phone. I was surprised it was so easy to arrange; the anxiety I’d had about contacting her was unfounded. We agreed I’d do two PowerPoint presentations for two of her art classes about how the art I’d made had been influenced by my travels; afterwards, we would hang up half a dozen pieces of my work in the lobby with her students as helpers. On the designated day, I showed up with some art supplies for the demo as well as a flash drive on which I’d created a PowerPoint with some pictures. This was nothing for me to be nervous about, as I had spoken to middle school students many times before, mostly as a reporter. 

This time, however, I was having difficulty standing up, My body felt uncomfortable in my blouse and jeans, as if they belonged to someone else, but during the talk I tried to act like nothing was wrong. I showed one slide of a bronze statue about thirty feet tall that I’d passed regularly taking the bus to a beach in Brazil while an artist-in-residence in Bahia in 2009, just before I had moved to Albuquerque. The statue appeared to resemble a man and woman dancing, held together by one hand. Every time I had taken the bus from the artist residency to the beach, I passed it, I told the students. One day I took a few pictures of it. Since moving to Albuquerque, I’d made a rubber stamper of the picture I’d taken of the statue, and with it I had made dozens of greeting cards. I showed them a picture of the different cares. I had also replicated the image in a few other projects, including piece I’d be hanging in the school lobby: four embellished prints of the statue in one frame.

The students paid close attention to my stories. One student noticed that the image the stamper produced was a mirror image of the statue. It was late February and not particularly warm in the room, but as I continued talking, standing in front of the class, I started sweating profusely. I was starting to become concerned that I was going to sweat through my clothes and I was thankful that Valeria Rios was not standing near me watching sweat pouring out of me. She was racing around the classroom with pieces of my artwork, pointing out in English and Spanish the aspects of the work that I was describing. In the break between one class and the other, she said, “What you have to tell my students is so juicy!” She got right in my face to say that, while bringing her fingertips together and kissing them. I was so happy she was liking the presentation and that the students had such interesting questions and comments. But I felt out of sorts, drained, and self-conscious. I tried to remember the last time I had stood up for any reason for more than ten or fifteen minutes at a time. I felt dizzy and weak, afraid I was not going to have the energy to do the second class. I felt mad at myself for making this commitment, and also trapped within Valeria Rios’s joy that I could not possibly leave midway, as much as I felt I needed to.

At the end of the first class, she asked for volunteers to decide how to arrange my work in the lobby, and a bunch of kids raised their hands. As good as I felt emotionally, all of the commotion made me feel overwhelmed and dizzy.

I had done the first session standing, just as I had generally done when teaching college journalism classes. For the second class, however, I was so dizzy that I had to sit down. I felt embarrassed to ask for a chair to continue my presentation, and even more self-conscious to re-deliver it sitting down when it had been my habit when teaching to be moving about the classroom. I imagined the art teacher wondering why I was sitting down and why I was so sweaty. In the first session, I had used the example of the statue in Brazil as inspiration, so in the second session I had planned to talk about a collage I’d made of a woman selling water from a bucket she balanced on her head, a familiar scene in Haiti, where I spent seven months in 2000 and 2001. I usually liked to challenge myself when teaching two back-to-back college classes by making the second lecture somehow different from the first. I planned to do that this time as well, to make the presentation non-repetitive for the teacher and more challenging and interesting for myself. But when the second class began, I felt so drained that I forgot everything that I wanted to add about the trip to Haiti. Instead, I repeated the same presentation from the first class, pushing myself to finish and fill up the allotted time while feeling like I was running out of steam. Even though it was clear the teacher and students appreciated my visit, I felt I came across as disheveled and unprepared, someone who might be talked about in the teacher’s lounge as a disappointment.

I was feeling weak by the time a few students, the teacher and I went to the lobby to hang the artwork. The principal said the janitor needed to identify the spots on the drywall that were strong enough to hold the weight of my artwork, so it would have to wait until the next day. That made me feel deflated because I wanted to see it hung, but I knew I would not be able to muster the energy to return to the school again. The next day, the art teacher texted me some pictures of her students hanging my artwork, which looked great in the lobby. I saw the excitement on the students’ faces, and it was only that that I realized I hadn’t bombed. I would return to Valeria Rios’s classroom one year later -- feeling like a completely different, unsweaty person.

3.

Meningioma

The visit to Valeria Rios’ classroom was one of the things I did to keep busy while waiting impatiently for my appointment with the neurologist who was able to see me the soonest, Dr. Manuel Gurule. Our appointment was on Tuesday, February 21, 2017. According to his practice’s website, Dr. Gurule got his undergraduate degree at the University of New Mexico in 1993 and his medical degree from the Medical College of Wisconsin, Milwaukee in 1997. He did an internship in internal medicine between 1997 and 1998 and a residency in neurology between 1998 and 2001, both at local hospitals affiliated with the University of New Mexico’s School of Medicine. He was one of three neurologists in the practice, and when I had called to make my appointment, his office staff said I’d find him to be very nice, and a great listener as well.  

In the car before I went into his office, I took a half Xanax. There was no other way to cope with an appointment of this type. I had learned from the Thug Wave that if I didn’t, the anxiety I experienced was not only debilitating, but it could last for hours before and after. Flipping through a magazine, my anxiety was soaring to new highs. I had placed all my eggs in the brain injury basket by that morning. I needed an explanation. Once I got one, I’d stop beating myself up all the time for going days or weeks without remembering what I had been doing.

Dr. Gurule walked from his office to the waiting area to call me in, wearing brown corduroy pants, a blue oxford button-down shirt, and a print tie that pulled the tones together. He was formal and dry as he listened to my symptoms: out-of-control emotions, getting lost, personality changes. As I had to do with each new expert, I told him I had been diagnosed with and was in treatment for post-traumatic stress disorder, due to experiences of extreme danger and violence during my childhood. He seemed skeptical that the symptoms I described were anything other than PTSD. But he agreed to give me a referral for a magnetic resonance imaging scan, also called an MRI. According to Medical News Today, “an MRI scan uses a large magnet, radio waves, and a computer to create a detailed, cross-sectional image of internal organs and structures. . . The scanner itself typically resembles a large tube with a table in the middle, allowing the patient to slide in . . . An MRI scan differs from CT scans and X-rays, as it does not use potentially harmful ionizing radiation.” The referral allowed me to show up at my convenience at a designated imaging center to get my brain examined, and the results would be sent to Dr. Gurule. He shook my hand and said he’d see me in three weeks to let me know what the MRI revealed. That appointment lasted less than twenty minutes.

I went the next day for an MRI. I’d gotten one before, in 1996 at the suggestion of my eye doctor when I went to him because of headaches that I thought might be caused by an outdated prescription. When the prescription proved still accurate, he recommended an MRI scan, which came up clean. Since then I had given no thought to that experience. Emotionally I was in the numb zone I had created on the operating table at Princess Margaret Hospital in Nassau, feeling like I was semi-detached from my body while Dr. Garikaparthi had used a hook and other instruments to repair my limb wounds.

When I got to the parking area of the imaging center, I loaded the bowl of a small pipe with a form of medical marijuana intended to have sedating, calming effects. I smoked a full bowl in my car before going inside. I had also taken a Xanax on the way to the appointment. Ironically, I think my capacity to process what I was feeling about getting an MRI -- after several years of cognitive shifts, mood swings and not working, as well as recent incidents of projectile vomiting, a gong going off in my head, getting lost, freaking out in lines and parking lots -- was diminished by the disorder in my brain anyway. Sedated, I went inside the imaging center in the Northeast Heights part of Albuquerque. I met with a tech who took images of people’s brains and spines all day long whose name was also Elaine. She told me to go into a small dressing room and put my clothes and purse in the locker, change into hospital scrubs, wipe the deodorant out from under my arms and come out of the dressing room with only the locker key, wearing a cape-like top and blue cotton bottoms. She seemed concerned about making sure I didn’t have a bad experience there, speaking to me very patiently and warmly. When I came out, she told me to follow her into the imaging room, a high-tech, clean sterile space where everything was either white or silver. She had me get on the MRI machine, which had a narrow plank of bed on one end and a head vice at the other. I lay down and put my head in the vice, the position in which I would be slid into the scanner, the way an uncooked pizza gets slid into an oven. I remembered the experience from the mid-nineties as being very claustrophobic.

Elaine went into a glass-enclosed area in the imaging room once I was positioned on the bed. She spoke to me through a microphone on another side of a glass wall, asking me if I was ready to begin. She asked if I wanted to listen to music, and I chose Native American flute, which would become my go-to pick for all future MRIs. She piped it in through the speakers built into the headgear of the MRI machine. As the soothing music came on, I was automatically slid into the oven-like capsule. I felt the grip of the head piece tighten around my head to hold it in position. I had to remain perfectly still on the cot. While trying to drift off, I heard above me a series of loud winding and clanging noises, much louder than the music, for about a half hour. Periodically Elaine checked in with me, asking if I was OK. She had rested a bell on my stomach that I could ring to get her attention and stop the whole procedure if I couldn’t take it anymore, but I felt OK. My medication prep-work, her being so nice to me, and having had an MRI before made the experience more tolerable.

When the scan was done I changed back into my clothes. Elaine must have known then that I had a brain tumor. It wasn’t her job to tell me, and I left without requesting a print of the scan. Had I known that I could have asked her for either a print-out or a DVD with the images on them, I would have been able to make a reasonable guess that I had a brain tumor. Instead, I had to wait three weeks before going back to Dr. Gurule. I stole the hospital scrub pants that I’d worn to take the MRI in. I deserved a consolation prize after that, I thought. I stuffed them in my purse before leaving the building.

On March 16, a week or two before my second appointment with Dr. Gurule, I returned to his neurology office for an EEG with a nurse practitioner. The second hoop to jump through before getting the MRI results, an EEG is a test that detects brain wave abnormalities. During this procedure, the nurse practitioner pasted small metal discs with thin wires to my scalp. The wires were hooked up to a machine to detect tiny electrical charges that result from brain cell activity. The EEG could diagnose conditions such as seizures, epilepsy, head injuries, dizziness, headaches, brain tumors, sleeping problems and brain death. I was in a fog during the appointment and didn’t leave with any results.

I kept busy as best as I could between the EEG and going back for the MRI results. By then I felt convinced something was wrong with me, and I was eager for some news that would explain the problems I’d been having. At the same time, I didn’t know for sure that something was wrong with me, leaving me to wonder if I was just lazy and disorganized.

I went back to Dr. Gurule on Monday, March 27 at 3:20 pm, about three weeks after the MRI. I was at once emotionless and excited, because the MRI had already been completed, so whatever it showed was already a known quantity. I felt certain it was going to show something. I had a short wait in the reception area before he called me back to his office. But first we stopped off in an exam room where he performed a few reflex tests on me, tapping a mallet on my knee and waiting to see what happened. My reflexes were all normal. Then we went to his office and he sat behind his giant desk.

The first thing that I remember hearing was, “You don’t have a traumatic brain injury…”

What do you mean I don’t have one? I thought. How am I supposed to function this way? How can nothing be wrong with me, you fucking douche--. And then he broke in on my thoughts with the sobering second half of the sentence: “but you do have a brain tumor.” He said it was almost three cubic centimeters large and called a meningioma; its location was right parietal.  He spoke with no trace of interest or emotion. He said the tumor was in the meninges, which I recalled from nursing school preparatory classes was the tissue lining the brain. Now I have an answer. I thought with relief. I’m not going crazy; I have a tumor in my brain.

I asked if I could see a picture of the scan. “Oh, we can do that,” Dr. Gurule said haltingly, as if showing me my tumor was a departure from protocol. It was the size of a golf ball and bright white against the hues of gray, white and black. It was surreal to think the image represented a major abnormality inside my brain. Meningiomas, which are usually benign, affect about 6,500 people in the U.S. each year, according to an article on WebMD.com, which reported on singer Sheryl Crow's meningioma diagnosis in 2012. A meningioma is a tumor on the brain’s surface made from cells in the tissues of the brain lining surrounding it. Given its location on the brain’s surface, as it grows, it pushes on, but doesn’t invade, the brain, according to the article.

“If you’re going to have a brain tumor, this is probably one of the ones you’ll want to have,” Dr. Gurule said, presumably to detonate the thunderclap of this news. Thank you! God! Finally! This explains everything! Maybe the loud gong noise I had heard in my brain was the growing tumor shoving some part of my brain out of its way so it could occupy that space. A brain tumor sounded better than a traumatic brain injury because usually brain injuries could not be resolved, whereas brain tumors could be dealt with.

I told Dr. Gurule that the brain tumor must have been why I’d been unable to control my emotions, and why I’d been experiencing extreme rage, depression, anxiety and personality changes. He was the first of two brain doctors to disagree. According to him, those symptoms were PTSD-related, and I had no brain tumor symptoms. As he saw it, I was asymptomatic on a number of fronts: first, the EEG and the reflex tests he had just performed left him convinced that the brain tumor was just occupying space in my brain, but not involved in those symptoms. And, he said, the tumor didn’t have to be removed. It could instead be “monitored” since the reflex and EEG testing did not indicate that my brain was functioning differently because of it. If I’d had abnormal reactions to the reflex tests, he said, the tumor would have been shown to be impacting my brain.

He said my next step was to return to the imaging center for another MRI; this time, dye would be injected into my hand that would travel to my brain to outline the parameters of the tumor more accurately. It would show what was brain material and what was tumor. As I was leaving he wrote the words “suspected meningioma” on the back of his business card. I left feeling crazy that I felt relieved that I had a brain tumor.

When I got home, I went online to see what the cause of my brain tumor might be, and whether there was a connection between the brain tumor and the changes to my behavior. Among the medical causes I came across online were: genetic mutation, obesity, cell phone or X-Ray exposure, a cancer that might have formed in another part of the body finding its way to the brain instead, a traumatic brain injury creating a host space for a tumor to grow in. I also read that women were twice as likely than men to have a meningioma. Any of these reasons could explain my diagnosis. As badly as I wanted to believe Dr. Gurule when he said that the brain tumor and my behavioral changes were unrelated, I knew there had to be a relationship, due to the increasingly obvious signs. What I found on line confirmed what I thought and contradicted Dr. Gurule’s opinion. According to WebMD, brain tumor symptoms include “seizures, changes in speech or hearing, changes in vision, balance problems, problems with walking, numbness or tingling in the arms or legs, problems with memory, personality changes, inability to concentrate, and weakness in one part of the body.” Although I wasn’t dealing with the physical problems that the reflex test or EEG could have picked up, I had all the mental and behavioral symptoms -- speech issues, personality changes, memory and concentration problems. This left me wondering why Dr. Gurule was relying only on testable, physical symptoms as indicators and dismissing the emotional ones.

On the same day as the brain tumor diagnosis, I checked my phone to see if I had gotten any emails. To my shock and joy, I had received one from State University of New York at Buffalo. Months before, prior to any brain tumor conversations, I had applied for a visiting professorship at their Singapore campus teaching communications. I had seen the position on the same college instructor website I’d used to find the job in the Bahamas. This job paid six times more than what one could earn in New Mexico, and the benefits package included both travel to and from Singapore and housing for each semester. In the past two years since leaving the Albuquerque Journal, I had been applying for jobs, usually with little response, and now, finally, I was getting some positive attention when I most needed it. The email was asking if I’d like to be pre-interviewed by phone for the position, which would start in late August, 2017.

I wrote back to the professor and said yes. If I got the job, I’d have something to look forward to and get me though the next months. I expected that I would be all done with the brain tumor issue in plenty of time. The communications professor responsible for recruiting a candidate was Dr. Michael Stephanone, with whom I emailed back and forth a few times to arrange a time for him to call me at 3 pm Eastern time later that week for a telephone pre-interview.

Most likely due to the tumor, 3 p.m. Eastern time registered in my head as 3 p.m. Albuquerque time. On the selected date, at 3 p.m. Eastern time, or 1 p.m. Albuquerque time, I got a few phone calls from an area code I didn’t recognize while I was donating plasma which I let go to voice mail. I went home to prepare for the call I expected at 3 p.m. When it didn’t come, I checked my emails and saw that Dr. Stephanone had written me, saying his two calls for the interview had gone to voice mail and he wanted to know if we could reschedule. I looked back at his earlier emails, which all said “3 p.m. EST.” It was only then that I realized that it was he who had been calling at the time of our appointment, and that I was two hours off. I began sending emails apologizing profusely and asking if he could offer another time at his convenience. He was glad to reschedule, accepting my explanation about the time zone difference for the mix-up. For years working as a reporter I scheduled telephone and in-person phone calls with people and had never mixed them up this way. This was the beginning of the tumor noticeably impacting me.

We set aside thirty minutes for the rescheduled phone interview, but we spent almost an hour talking when it occurred. He said he was doing ten telephone pre-interviews and bringing in three finalists. He talked about weekend travel opportunities he’d enjoyed when he taught there, including a three-day boat trip to Indonesia that sounded fascinating. He said other hires often shared cabs from the apartment to campus or used public transportation, since buying or bringing a car was not allowed due to permit restrictions. He said the weather was hot and humid year-round and that Singaporean students were eager to talk with foreign faculty outside class. The phone interview must have gone well enough for him to ask the school’s travel agent to arrange me a round-trip flight to Buffalo for an interview in April. From the 100 applications, and 10 telephone interviews, I was among three finalists who’d come to campus, and they would hire one candidate, possibly two. If they hired two people, my odds of getting this job were 2-out-of-3, and if I prepared well, I could kill the interview, get the job, and fly off to a new life in Singapore after having time to recover from the surgery and prepare to move to the other side of the world.

At that time, I didn’t know I’d have something else to do on August 28, the date that job would start.

In the weeks before I would fly to Buffalo, I went to Home Depot one day for some grout to finish a mosaic tile project I had been working on off-and-on in my bathoom. While I was walking the aisles looking for grout, my friend Jennifer called. We had met more than twenty years before, when I was a reporter at the Baltimore Sun in the nineties, and when she was a finance expert with one of Baltimore’s top investment firms. She and I had belonged to the same gym, and after months of saying hi to each other in the locker room or near the treadmills, we made plans to have coffee after working out. Although she was only a few years older than me, she seemed much more mature and successful. She wore business suits every day and lived in a big, grown-up house. We lost contact when I moved from Baltimore to Columbus, Ohio in 1998 for graduate school. Around 2009, we reconnected on Facebook. I visited her in Baltimore in 2009, and she and her two sons came to Albuquerque in 2011. Since then we’d kept in touch by phone or text. A few days after I got the diagnoses, she texted me to see what was new. I texted her back to say that I had a brain tumor, since I was having a hard time saying those words aloud. It must have been an alarming text to read; she called me immediately and made it clear that she was ready to buckle up and stay on board with me through this. In the first weeks after the diagnosis, she called me from work almost every day, promising that if I could get through this, my life would become better once I healed. I clung to these words – which she later told me were improvised and aspirational – for hours after conversations with her. Telling me I was going to triumph over this tumor and soar from it, she was winging it with no real knowledge, but her delivery was so persuasive that I never thought she was as clueless as I was.  

She called me when I was at the Home Depot getting supplies to complete the bathroom project. I told her the bag of grout I was lugging around was extremely heavy. Since the diagnosis, everything felt heavier than normal. The bag was dragging me around the store, not the other way around. Jennifer managed to see a positive aspect to nearly every angle of the tumor diagnosis, the first of which involved the bag of grout. “Get someone to take it to your car!” she said. “Tell them you have a tumor! They’ll do it for you.” That seemed like an excellent idea. Why shouldn’t I offload challenges or complications to others on the strength of a tumor that was increasingly controlling my whole life? I looked for the first person I saw who had an orange apron on, a young chunky guy who looked nice enough. I went up to him and said, “Hi. I was just diagnosed with a brain tumor. Can you carry this to my car for me?”

“Of course, ma’am,” he said, as though this was a reason regularly given for why a customer might need his help.

“Can I get in the cart and you push me to my car?” I asked. I was still talking to Jennifer, who started laughing. He said he couldn’t push customers in carts due to liability.

Now that I was aware that I had a brain tumor, I became more cognizant of other possible symptoms I’d been denying in the past. One of them was that I become drained of energy before doing half as much as I might have done in any given day a few years before. The trip to Home Depot had left me exhausted, and I wanted to go home and rest, but I stopped at Office Depot to scan a few documents onto my flash drive. I got in a line with four customers ahead of me. When another line opened I rushed to the front of it, ahead of an older man who had been ahead of me in the other line. In jeans and a flannel shirt, he looked ragged, like he’d done hard labor all his life and his body was sore. His skin was the color of cement and his face was carved with creases. He said loudly that I didn’t have any business going to the front of the line, seeing that he and other people had been waiting longer. The cashier didn’t notice and rang me up while the man continued complaining. He rolled his eyes at me and sucked his teeth. I motioned him to come over to where I was standing and I politely explained to him that I had just been diagnosed with a brain tumor and that I was having trouble standing up and maintaining my balance, and that was why I hadn’t gotten to the back of the line.

“That’s all well and good,” he said. “But it’s no excuse for rudeness.”  

With the tumor I felt free to cut lines, ask for rides in Home Depot carts, and participate in conversations without regard for whether something crazy might come out of my mouth. One day that week I went to a medical marijuana dispensary – a different one than the one where I began shouting. I relied on smoking medical marijuana almost daily since the diagnosis, because I was more anxious than usual. I noticed that the owner was bent over a computer in the office and didn’t have on underwear, which gave me no choice but to notice that on his left butt cheek was a red mark the size of a handprint.

“Did you get spanked last night?” I asked.

He laughed. “Nope, I got slapped.”

When I went back to the imaging center for my second MRI, I already knew what to do. I changed into the scrubs again, wiped the deodorant out from under my arms, took off all my jewelry in the tidy changing booth and got on the MRI bed again. The same technician, Elaine, strapped me in, this time also injecting a vein in my hand with the dye that would go to my brain to confirm the size and borders of the meningioma. We chatted a bit, but there was never any mention of the tumor, which I thought she must have known about if she’d looked at the images she had taken. She told me that using the contrast dye made the procedure conclude faster. After hearing the clanking noises of the MRI machine for 20 minutes, she said I had done fine and to go change clothes and I was free to go. I stole the pair of scrubs that I wore again, even though they were the same color as the ones I had taken the last time. 

I went back to see Dr. Gurule on Thursday, April 13. He seemed equally disinterested in my case as he had been the first time. The second MRI confirmed that I had a meningioma, he said, and according to this new scan, it was even bigger than initially thought. The first MRI measured it at 2.83 cubic centimeters; the second one, with the dye for accuracy, measured in at 3.1 cubic centimeters. When we got onto the topic of surgery, he continued acting like I had a hangnail, saying that whether I got the tumor removed was up to me. He said that nearly all meningiomas were benign and could be operated on with a high rate of success with a two- or three-day hospital stay followed by two or three weeks of recovery time. This sounded like even less time for recovery than I had imagined. When he didn’t suggest a surgeon for me to go to, I asked for recommendations, which he seemed befuddled and put-upon to provide. He gave me two -- one to Dr. Metzger, who was in private practice, and one to University of New Mexico Hospital’s neurosurgery department with no doctor’s name. He said the wait at UNMH was usually longer, so he recommended that I try to get an appointment with Dr. Metzger first. Then he walked me to the front desk so the office manager could print the referral forms. She told him that Dr. Metzger didn’t take my insurance, and Dr. Gurule replied that he thought that he did. (Translation of Dr. Gurule’s message to me: “You can go find that out for yourself whether Dr. Metzger takes your insurance, and if he doesn’t, you can go to University of New Mexico Hospital and figure things out from there.”)

“One day at a time, Elaine, one day at a time,” was the only tip he had for me. He shook my hand on my way out. That was the last I saw of him.

I felt lonely and unsupported on the car ride from the neurosurgeon’s office. I would have loved to have been able to call my mother, but when I had shared the preliminary news of my brain tumor with my immediate family members, from whom I had been estranged for years, they were not concerned. Coping with that was a regular topic in my ongoing therapy sessions with Karee, who I met with at least once a week. Also, because I’d been so isolated for a few years, I didn’t have many consistent, active, relationships where there was frequent and regular contact, with my many local friends and acquaintances to whom I could turn for support. I had only shared the news with a few close friends in other cities, some cousins, and two friends in Albuquerque: my neighbor across the street, Noelani, who’d become a close confidante, and Yahya, with whom I had maintained a strong connection because of his stabbing. He had since moved to Albuquerque from Santa Fe, and was working as a pharmacy technician at the University of New Mexico Hospital. He and I often had a hard time getting along, and went several months without contact, and then got back in touch. Earlier that year, we had reconnected after a hiatus, and he told me his eyes had welled up with tears when I texted him a picture of the MRI. That was one of my first indication of what it was like to be on the hearing end of the events I was living.

When I got to Dr. Metzger’s office, the woman at the front desk told me that Dr. Metzger did not take my health insurance, exactly what Dr. Gurule’s office assistant had already pointed out. Then Dr. Metzger’s front-desk person sent me to Dr. Mark Bryniarski, a neurosurgeon at Lovelace Health System, the facility in which I had spent three days in the Behavioral Health Unit. A referral to Dr. Metzger was accepted by Dr. Bryniarski without question, she told me. “I see him at the Gamma Knife conference every Thursday,” she said. “He’s very nice.” I knew from some preliminary research that “Gamma Knife” was a form of brain surgery that involved radiation, advisable for tumors three cubic centimeters or smaller. I went back to my car to smoke more medical marijuana before driving to Dr. Bryniarski’s office located downtown on the same campus as the Lovelace Behavioral Health Unit where I’d spent three days the previous fall. As I found a space to park, I told myself that just because I’d had a bad experience in one part of the hospital didn’t mean I would have a bad experience in another. The Neurosciences Center was on the second floor of a five-story tower a short walk from the mental health building. I got in line at the reception area and gave a scheduler the referral. She found an opening for me to come in for a consultation on May 9, almost a month away.

4.

Retina

Three days after arranging an appointment for a brain surgery consultation with Dr. Bryniarski, I was helping connect Yahya with my mechanic, Marcos, to fix his Jeep. A Palestinian Muslim who’d come to the US at 13 speaking only Arabic, Yahya was tall and lanky with blue eyes and light brown hair and he prayed five times a day. Hanging around with him was so much fun because it was effortless and comfortable. Since meeting him in the Santa Fe hookah shop five years before, he’d completed his pharmacy tech studies and was working the graveyard shift, earning $36 an hour as a pharmacy technician at University of New Mexico Hospital. Hanging out with him was always easy because we were like cousins by that point, sometimes eating off the same fork, using the bathroom in front of each other, going through each other’s fridges. But due to age and/or cultural differences, he and I got on each other’s nerves and sometimes didn’t talk for months. We spent a lot of time hanging out that spring as I was waiting for the brain surgery consultation, running errands so we could talk and laugh and kill time. 

One night in mid-April, he was following me in his Jeep to Marcos’ shop near my house so we could drop it off there for the night. It was then that I began noticing something else that was weird: I was having trouble seeing out of my left eye. It felt as if a reddish film was covering part of my line of sight. The lights outside the shop were off, and it was dark, but I had been there many times and knew where the shop was. But, because of this reddish film, I kept missing it, and we drove in circles around his shop several times because I couldn’t see even the outline of the building.

Within days, my vision got much worse. I could hardly see out of my left eye at all. I thought it was because my brain tumor was affecting my ability to see. Over the weekend, it was as if the light was going completely out and by Monday, April 17, I was all but blind out of my left eye. I called Dr. Gurule, but by diagnosing me with a brain tumor and giving me a few referrals, he had washed his hands of me. When I called his office hysterical that morning, he wouldn’t take my call. Instead, he told his office manager to tell me to go to the emergency room. The office manager was much more concerned, telling me kindly and encouragingly to go right to the ER. She said that if the brain tumor and vision loss were related, I might be fast-tracked for surgery at University of New Mexico Hospital.

I didn’t believe Dr. Gurule knew what he was talking about if he couldn’t even come to the phone. What did the ER have to do with anything? I was sure I was about to die from my brain tumor, which apparently was so hungry, vicious, and aggressive that now it was chewing its way through the fibers connecting my eyeballs and that was why I couldn’t see out of my left eye. I was freaking out. That same Monday, I had an appointment with my new primary care physician, Dr. Susan Roberts. I had only met her once before, and this appointment was the first one after our intake. My purpose for the visit was to tell her about the brain tumor so that she would be anticipating receiving reports from the brain specialists, and to have her fill out a DNR form for me, because if I was hanging in the balance between life and death during or immediately after the brain tumor surgery, I didn’t want to be saved.

When I got there, I told her that I could hardly see out of my left eye and that Dr. Gurule had said to go to the ER. She no longer wanted to talk about any of the other topics, and said I needed to get to the hospital right away. She said that if I didn’t feel safe driving, an ambulance could come to her office and take me to the ER. I said I felt fine to drive, although on the highway home I noticed how much harder it was to change lanes and merge with just one eye. Rather than going directly to the hospital, I went home to prepare, because I was convinced that with every second that was passing, the tumor was munching its way through my brain; before I knew it I’d be fully blind, deaf and completely dysfunctional, if alive at all.  

I had never been to the University of New Mexico emergency room and I wanted someone to go with me. I walked across the street to ask my neighbor. She was a former Albuquerque public school science teacher around my age, and she lived with her daughter, who had just turned 20. We had gotten to be friends over the three years that we had lived across the street from each other. She was not around, but her daughter was. She was aghast. She already knew about my brain tumor and would be taking turns with her mom caring for my two cats and two dogs when I’d be hospitalized. She grabbed me a few Xanax from her own supply before we left for the hospital in her car.

She took me to the University of New Mexico Hospital Emergency Room. It was the closest and the only one I knew anything about because my school friend Christy’s ex-husband/best friend worked there as a trauma surgeon. We went inside together and got in the long line. She wandered off and came back with a wheelchair and suggested I sit in it. No chair ever felt more comfortable. The Xanax I’d taken before leaving home was kicking in and I was losing my will to stand. I was just losing it altogether. While she was wheeling me around, I saw an acquaintance; we smiled and nodded because chatting didn’t seem appropriate. A few hours into waiting, my neighbor’s daughter said she had to go, and that she’d have her mom expect my call and pick me up. Now alone in a wheelchair waiting for triage, I saw a woman on a gurney covered with a sheet. She let out a cry every few minutes. A doctor tried asking her questions she was in too much pain to answer, so her daughter replied.

I finally got called in and was treated by a wiry intern with dirty blonde hair, a tight little mouth and big oversized glasses. She looked like she jogged every night after a fifteen-hour shift. In my own cubicle in the ER, sure my brain tumor was chewing through my eye, I texted my former study partner Christy to ask her whether her ex, John was working that night in the ER of the hospital I was in because if he was, he could have been within a few feet of me and Christy could have let him know via text that I was there, which could have changed the course of my experience. As a black woman, I felt that I was in a vulnerable place in the ER and I needed as many allies as I could gather, particularly white male ones. She texted me back to say he wasn’t on duty that night. I hadn’t talked to her in a while, because she was finishing her studies in the physical therapy program at UNM, for which we had studied together when we had overlapping classes when I was preparing for my first botched attempt at nursing school. She had been spending time with her studies and had recently gotten remarried, all the while remaining good friends with her ex, John. When it was time for the doctor trainee to see me, she did a few tests on me, and it took her only a few minutes to determine that the blindness was not related to the brain tumor, and that I must go to the hospital’s eye clinic the next day because they had the equipment and expertise to diagnose whatever was going on with my eye. This was so shocking to me. I called Noelani who came to pick me up. We rode home, mostly in stunned silence.

An emotional mess the next day, I put on a cranberry-colored knit sweater dress to receive the courteous and respectful treatment I believed a nicer outfit would provide a black woman showing up in a health care facility alone. In a town of between two and three percent black people, I knew my appearance mattered. The clinic was on the University of New Mexico Hospital grounds and I parked in K Lot, about three long blocks to the entrance of the massive teaching hospital. I smoked medical marijuana and took half a Xanax in my car. Then I walked to the front entrance and turned right into the Eye Clinic. I had never been there before, and I was scared. Checking in took about ten minutes and included the front desk staffer taping a paper ID bracelet to my wrist and asking if I’d recently fallen. Then a tech named Trish called me into a dark exam room. I had to sit in a chair for pressure, vision and other tests before seeing the emergency eye doctor. I had gotten my first pair of glasses in pre-school, and since then, I’d had regular eye exams until I started wearing contacts in high school. I got Lasik eye surgery in 2008, which reduced my need for frequent eye care. Before that, without glasses or contact lenses, driving was out of the question, and things at a distance were so blurry as to be unrecognizable. After Lasik, however, I woke up every morning with the miracle of 20/20 vision. Now, I could still see out of my right eye fine, and virtually nothing from my left. During the exam I had to sit in different chairs, stare into a blue light, read from charts and rest my chin in a cradle while she took images. Images of one eye had wavy lines; the other had flying stars. That’s when I began to feel afraid beyond the constant state of fear I was already in because of the impeding brain surgery consultation. I asked Trish what was going on but she demurred with her answers. She was most likely aware of what the images showed, but had been trained to let the doctor break the news to me. She put dilation drops into my eye. It would take about fifteen minutes for my eye to fully dilate.

The first doctor I saw was Dr. Sanchez, the emergency triage doctor who called me in when he became available. He was a middle-aged, extremely slender man with a slight curve to his spine that made him look like a capital C in profile. He had a jogger’s frame and, like many of the doctors in the eye clinic, spoke Spanish as well as English. I had overhead him speaking Spanish before he said to follow him into his office. He was very courteous and professional, shaking my hand and asking how I was doing, in case it was not obvious. Although my eye had not fully dilated, he had already looked at the images. Once I sat down in an exam chair, he pulled a machine up to my face and looked in.

“You have a detached retina, it looks like.”

I immediately started to cry. My body was buckling in my chair and I was shaking and sobbing into my hand. After he waited patiently and apologized for being the bearer of bad news, he said that I would see the retina specialist shortly for final confirmation. It was difficult for me to process what he was saying. I had come in with a tiny bit of hope that the clinic’s experts would tell me that the ER doctor was wrong and that my vision would come back as soon as the tumor came out, but now that was impossible. Dr. Sanchez continued with the unvarnished hell that was having a detached retina: if I was to regain any vision at all, in my left eye once I had retina reattachment surgery, which would have to be quick, I would have to lay face down for 24 hours a day for two weeks.

Unimaginable. Two weeks. I was crying doubled over in the exam chair and had to leave the room to pull myself together.

According to online medical journals, the retina is a layer of tissue that lines the rear inner surface of the eye and processes visual images sent to the brain through the optic nerve. Retinal detachment happens when the retina detaches from the choroid layer, and blood supply to the retina is cut off and the retina can’t work. It requires emergency surgery or could lead to permanent blindness in that eye. The symptoms are “floaters,” which are appearances of floating particles in one’s vision, flashes of light, and vision deterioration. Those most likely to experience it are people over 50, with a family history or it, or with extreme nearsightedness. I was a few months from my 50th birthday and had been wearing glasses for extreme nearsightedness since I was four or five years old. Causes include a blow to the head, eye injury, blood vessel damage, an eye infection, inflammation to the retina because of trauma, uncontrolled diabetes, and previous eye surgery. These factors left me unclear as to the cause of mine. I wondered if it were possible that when I had the minor car accident in the Panera parking lot that totaled my car, the ensuing whiplash I was treated for had caused trauma. Or, as I proposed to Dr. Sanchez, I might have caused this myself, creating a trauma to the retina by rubbing my eye too much while crying from the brain tumor news. “Rubbing is not good,” Dr. Sanchez said, but didn’t seem convinced there was a link. I’d later learn that the retina detachment probably had not happened because of rubbing tears from my eyes.

Statistics show that about one in every ten thousand people experience a detached retina in the U.S. every year. If the US population is 325.7 million, that means that 32,570 people in the U.S. got a detached retina every year. If only 65,000 people got meningiomas every year in the U.S., it seemed statistically impossible that anyone could have both at the same time, but there I was, sitting in the eye clinic being told that this was my new reality.

That day was a Wednesday.

The next morning, Thursday, I was supposed to fly to Buffalo for my job interview for the college teaching job in Singapore. I told this to Dr. Sanchez, who said I had two choices: have emergency retina re-attachment surgery on Friday and forego the interview, since flying and changing altitudes was not permitted for several months after retina reattachment surgery, or go to the interview with a detached retina, come back, and get the surgery done next Monday. He told me to mull it over while waiting to see the retina specialist, Dr. Joaquin Tosi.

My friend Yahya was on his shift as a pharmacy tech at that same hospital, preparing and delivering prescriptions to patients in their rooms, when I got the news. I was very upset and I called him. He asked where exactly the eye clinic was and took a shuttle, arriving out of breath to find me crying in the waiting room. While waiting for him, I had called my mother, who was no more interested in my detached retina than she had been in my brain tumor. She declined when I asked if she could come out from New Jersey while I lay face down for two weeks. By the time Yahya arrived, I was a mess. He hung out with me until Dr. Tosi returned to the waiting room about fifteen minutes later. He was a handsome Argentinian middle-aged man with salt and pepper hair who spoke English with a slight accent. He told me that he had already heard about my case and was ready to see me in a few moments but had to go upstairs to his office first. He left the clinic, walking past me and Yahya to the stairs, and as he walked by I felt a little safer. I could tell that he was going to be the warm and fuzzy koala bear who could bring some order to this mess. I felt more comfortable around his energy than I had been around any of the five different doctors I’d seen in the past few days.

Dr. Joaquin Tosi had become Director of Retina Service two years before. His grandfather was also a retina specialist, and during his childhood in the La Plata area, when his grandfather’s assistant would go on vacation, he asked his fourteen-year old grandson to help him out. Finding it interesting, the teenager Joaquin enjoyed filling in regularly for his grandfather’s assistant and thus decided the retina was his calling. After medical school at the National University of La Plata in Argentina, he did a two-year fellowship at the University of Buenos Aires. In the mid-2000’s, he came to the US and had done advanced training at Columbia University and at Kresge Eye Institute in Detroit, where he worked with a doctor who convinced him to take the job in New Mexico, which had a shortage of retina specialists.

Dr. Tosi came back from his office and asked me and Yahya come into his exam room. After looking at the data and looking into my dilated left eye, he confirmed what Dr. Sanchez already told me: I had a detached retina, but it was not completely separated; if I understood his explanation, which I was never sure that I did, it was ripped in the middle but still attached at the ends. I was therefore a candidate for a laser surgical procedure that would zip it back together. I was never 100 percent sure I understood what Dr. Tosi was telling me. The laser surgery which he would perform in the clinic could paste the retina back into place, and hopefully it would hold, he said. Pretty much every individual word freaked me out; the collective information I was getting was too much. If didn’t adhere, then I’d have to meet him in the outpatient surgical suite for a surgery to my retina that would be followed by two weeks of me laying face down.

“Do you want to try it?” he asked me.

I said yes. I told him I had an interview in New York the next day, so we agreed that I would have the laser procedure when I got back, on Monday, April 24. I asked if he thought he’d be done treating me by August 28, which was the start date of the job I was going to interview for. I could imagine how strange of a question this must have seemed like coming from a patient currently blind on one eye and awaiting a brain surgery consultation who needed him to reattach my retina beforehand and wrap up the aftercare in time for my escape from the site of these duel situations. He smiled and said my opportunity sounded exciting. He seemed impressed that I was motivated to plan ahead and not slip gob-smacked into paralysis by the recent jolt of news he had just added to the full plate I was already chewing on. He calculated in his head and said he thought he would be able to discharge me by late August, but if not, he’d put together a folder with all my eye data so I could get continued care in Singapore. Dr. Tosi made me feel supported in going to the interview regardless of the fact that I was probably the only person on earth with both a ripe brain tumor and a detached left retina.

As shaken up as I was, cancelling the interview because of the upcoming detached retina surgery was not something I considered. The two didn’t overlap, and I had nothing else to do while waiting for the consultation, and even if I had something to do, I couldn’t concentrate on anything anyway. As was the case with the laser surgery, I felt I had nothing to lose by going to the interview. I had gotten a few such jobs before, even when the odds were not so clearly in my favor. I felt it was a matter of concentrating, medicating, and doing the best I could do. Pulling off this interview under these conditions would be rewarded with a cushy, well-paid job overseas, even better than the one I’d had in the Bahamas.

My needs for support from my friends increased with the retina detachment diagnosis. I emailed and Facebook’d some close friends, some of whom I hadn’t talked to in a while, mainly because the tumor symptoms I was just beginning to label as such had made me feel so at risk of freaking out about something minor that I didn’t want to take a chance of that happening mid-conversation. I was, therefore, not too excited to speak to people because I might go ballistic for no reason, but with both diagnoses, I had to risk it or lose my mind crying through the day and night in loneliness and isolation interrupted by interactions in which I tried to act normal in the face of endless bad news.

One friend I knew would probably put up with whatever irrational behavior I was engaging in was my former roommate Stephanie. She already had shown great ranges of patience, tolerance amusement in the face of my unpredictable behavior many times when we were roommates in 1986 for a summer internship held at New York University for aspiring journalists. I had called her because I always felt grounded after talking to her, but she did not pick up. She called back and left me a voice mail message I listened to every few days whenever I felt scared or lonely. She called the tumor “that item,” sputtering the word like it was dirty, and prayed that God would cast it out. “It has to got to go, because it’s in the way and causing problems.” It made me laugh and cry each time I heard it.

Stephanie and had met in the mid-80’s when we were assigned to be roommates in a New York University dormitory during a summer media internship. I had just completed my sophomore year at Wesleyan University, and Stephanie had just graduated from Tugaloo College in Mississippi. That summer I felt like a grown-up for the first time, going to a 9-5 internship on the subway in a dress and heels. In the mornings we checked each other’s outfits, in the evenings we went grocery shopping for Hamburger Helper and spaghetti and watched comedians tell jokes and magicians eat fire in Washington Square Park. I used part of my first paycheck to buy a cassette of Janet Jackson’s album “Control.” One day I walked from my twin bed to hers and, adapting lyrics of Janet Jackson’s “Nasty,” I said, “Yo, my first name ain’t baby; it’s Elaine. Ms. Tassy if you’re nasty.” We weren’t in the middle of a conversation or even listening to music. Then I walked back to my bed and sat down. Stephanie could not stop laughing. After that she usually called me Ms. Tassy. She found me to be always getting up to something out of the ordinary, and whenever I reported a wild adventure to her she’d say, “Only you, Ms. Tassy, only you.”

We talked on the phone before I left for Buffalo. I told her that after being diagnosed with a brain tumor and getting an interview for a job in Singapore on the same day, I now was diagnosed with a detached retina which would get operated on when I flew back from Buffalo. “Only you, Ms Tassy,” she said. “Only you.”

We talked about what the schedule would be for my surgeries, but I didn’t yet have any dates. The surgical consultation with Dr. Bryniarski was still weeks away, and hopefully I would not have to have the eye surgery outside of the eye clinic and could have the laser procedure in-house when I got back. If that didn’t work, I told her, ideally it would be great if somehow I could get both surgeries done on the same day in the same room under the same anesthesia. It would save me a lot of anxiety and prep time. “They could just spin me,” I suggested. “Like a rotisserie.”

“Did you just say ‘rotisserie’?” I could hear her start sputtering with laughter and in my mind, I saw her shaking her head in disbelief. “Only you, Ms. Tassy. Only you,” she hollered. Laughing with her as we had every day thirty years ago in our New York University dorm made me feel fantastic. Moments like that motivated me and left me feeling safe and courageous enough to get out of bed and face every unpredictable day in the weeks to come.

According to SUNY Buffalo Communications professor Michael Stephanone, who had been emailing me with final details, the interview plan was this: I would fly into Buffalo via Chicago on April 19th. He and I would have dinner. The next day April 20th, between about 8 a.m. and 3 p.m., I would do a teaching demonstration and participate in numerous one-on-one and group interviews with several senior faculty members. Then I’d be taken back to the airport and would arrive in Albuquerque late Friday night.

By the time I was planning my trip to Buffalo, I had let about ten people know that I had a brain tumor: Yahya, Christy, Stephanie, and a handful of other trusted long-time friends. One of them was Dawn Jamison, who, like Stephanie, was one of few black women friends who’d worked in the newspaper industry. Dawn and I had met in 2002, when I had worked briefly as a pop culture reporter in the Entertainment section at the Grand Rapids Press, in Grand Rapids, Michigan. Dawn, a native Michigander, had at that time been working as a page designer and copy editor on the news side at the same paper. We became friends almost immediately. She invited me for Thanksgiving with her family, and she belonged to a church I began attending at her suggestion. I went to a party with her group of friends on New Year’s. Since I left in 2003, Dawn and I stayed in touch, getting to be even closer friends by phone and with regular visits. She and her husband and daughter had come to visit me in 2015 in Albuquerque, but since then, I’d ghosted some people, including her, because of my irrational behavior.

Because my diagnoses were so hard for me to talk about, I had sent a group message via Facebook to about five friends, saying I had a brain tumor. The minute I hit Send, my phone rang, and it was Dawn calling. She was easy to talk to, always excited for my highs and concerned with my lows. She had an excellent memory for most everything I ever told her. She had a huge circle of friends and family, many of whom I’d met. One day, she told me I was her dad’s favorite of all of her friends. After talking for a while about what was going on, I started crying. Dawn, knowing that an interview for any journalism gig was grueling, imagined what the trip would be like in my condition and realized I probably could not handle it on my own. She said she was going to drive from Detroit to Buffalo and meet me at the hotel, prep me for the interview and stay with me until I left. I was so overwhelmed at the idea of her making such a sacrifice for me that I started sobbing.

I got a ride to the airport from another friend I’d opened up to about the tumor who lived in Albuquerque – my friend Janet, whose sister Brenda, had taken me to the hospital and held my hand during the reconstructive plastic surgery in The Bahamas. Since moving to Albuquerque, Brenda had put me in touch with Janet, who along with her husband, children and grandchildren, had taken me in as an extended part of their family. The first time we met for a drink, Janet asked me about the Thug Wave Brenda had told her about, which had become a funny story in my story vault. Since I told Janet about my diagnosis on Facebook the same way I had told Dawn, Janet got hands-on right away, telling me that I had to make sure the retina surgeon and the brain surgeon communicated with each other and that I should accept help and support from anyone who offered it. She agreed to come over to take me the airport, although she lived at least twenty minutes away and the airport was only one freeway exit from my house.

By that point, my left eye hurt all the time and I kept it covered it with a patch. If I didn’t wear the patch, my left eye drooped closed on its own without me noticing. When Janet got to my house to take me to the airport, it was still dark out and I was very flustered and nervous. I hadn’t been on a plane since 2012, and I had never been on a plane when I was only able to see out of one eye. The brain tumor was continuing to make it difficult for me to stand up without feeling dizzy, and without the depth perception I had seeing out of both eyes, I was too nervous to drive myself to the airport, find a place to park, figure out how to get to my gate all alone when I had the brain tumor, detached retina, and interview all competing for my concentration.

That morning when I packed, I put a medical marijuana cookie in my bag since I couldn’t bring marijuana along. As soon as Janet showed up I started crying, because I was so taken aback at all that I had to juggle that day. We made it to the airport in just a few minutes. She gave me a hug and told me to text her when I arrived. During the flight, I ate chunks of the marijuana cookie, saving half of it for the next day. I only brought a small carry-on and didn’t check any luggage. I changed planes in Chicago without any problem, and then caught a shuttle bus from the Buffalo airport to the hotel. It was gray and raining heavily in Buffalo – weather very different from in Albuquerque, where it was sunny most of the time.

Dawn and I had been in touch by text and phone during the day. By the time I got to the hotel, she was still on the road, having gotten caught in a long line going through customs, since her route took her through Canada. I was hoping we would have time to meet up at the hotel before Michael Stephanone arrived to pick me up for dinner. She pulled up in the circular drive of the hotel about twenty minutes before he did. I was already downstairs, waiting in the lobby dressed for dinner in slacks and a sweater with some nice shoes and a ruffled shawl. I had put on lipstick probably for the first time since the brain tumor diagnosis. I thought I saw her gold Honda through the glass door of the hotel just as she called me to let me know she was there. I ran from the lobby when I saw her in her car, pumping my arms and legs and flying down the hall to the door outside. She parked for long enough to get out and give me a hug; I fell sobbing into her arms and didn’t want to let go. She showed me a bottle of wine she’d brought along for us to drink later that night while catching up after the dinner, and a beautiful black purse she brought me as a gift to wear for my interview that was big enough to put my laptop in. Her showing up helped me to calm down and feel self-assured. I gave her the card key to the room SUNY had booked for me just as Michael Stephanone showed up.  

I didn’t wear the eye patch while eating Asian food in a dark and trendy restaurant with him; as far as Michael Stephanone was concerned, I was a job candidate chatting breezily about teaching and travel experiences, not a medical superfreak concealing a detached retina and a brain tumor. He said his goal was to prepare me to do great at all facets of the interview, each stage of which he described. He also told me about the job, the best part of which was it being an easy point of departure for travel. My excitement drowned out the thunderous anxieties I was feeling and I felt ready for the next day by the time we left. When I got back to the hotel, I gave Dawn the dessert I’d brought back and we opened the wine and sat in our pajamas eating left-overs, talking and catching up on our lives.

The teaching portion of the next day’s interview would involve me lecturing to twenty-five students for about twenty minutes. I had asked Michael Stephanone for a copy of that class syllabus, so I could prepare a demonstration lecture on something related to what they were currently studying. According to the syllabus the class was studying the Federal Communication Commission that week, so I had decided to talk about Nipplegate, the scandal that had occurred when Janet Jackson’s nipple was revealed on national television during the Superbowl halftime show at which she and Justin Timberlake had performed. The exposure of her nipple resulted in a half-million dollar fine the FCC levied on CBS, the network that had broadcast the game. I had started the research for my presentation at home a few days ahead of time. Normally, doing a PowerPoint presentation was easy – I’d done it many times teaching college classes for seven years. This time, however, it was brutal and laborious. I didn’t have patience to do extensive research as I normally would have, instead deciding to be satisfied with whatever amount of material I could easily acquire online. As I worked on my slides, I noticed misspelled words on almost each one. It was impossible to concentrate. I could not stay focused or remember where I was in the order of events. I could not sit still very long. I tried working on it before leaving and during the lay-over, but it was not solid.

When I got back from dinner, my struggle to get the presentation ready, which I hadn’t fully realized was brain tumor-related, was intensely concerning for me. This had never happened. I was not interested in being thorough, and I had patience only to do the most rudimentary of performances. Dawn took over with both the PowerPoint and the rehearsals. She coached me through several rounds after we spent some time drinking, laughing and talking about how great it would be if I got the job. I was planning on just reciting the PowerPoint and leaving it at that, the lowest common denominator of acceptableness, while Dawn thought I needed to add some flair. She suggested I introduce myself talking about specific experiences I had had as a journalist, college instructor and world-traveler to get the students interested in me. When I was ready to do the presentation, she thought I should open with asking the class, “What does the term ‘Nipplegate’ mean to you?” She also tweaked the order of my slides and recommended taking out some details I’d planned to touch on she thought might be less compelling. I hadn’t cared about any of that.

I was exhausted from the flight, still processing the news, and experiencing pain in my patched eye, through which I could see nothing through except a deep red cloud I assumed was blood. I wondered whether she was noticing that anything seemed off about me and she wasn’t letting me know, or if it were only inside my head and the difficulty I had in functioning wasn’t as obvious to her as it was to me. We fell asleep with the PowerPoint nearly complete, then got up early the next morning to put some finishing touches on it.

Then it was time to hook up my outfit. I had packed a few options, and we decided on a long mustard-colored dress made of a year-round material and brown heeled boots. Dawn had me sit in a chair and she stood before me doing my makeup, using a blend of my makeup and hers. When she got lipstick on my tooth, she wiped it off with her fingertip, a gesture that convinced me of her total commitment to my winning this challenge. She decided that giving me full eyebrows would detract attention from the eyes themselves. I decided I was not going to wear the patch during the interview, no matter how hard it was going to be concentrating on keeping my eye open. Once I was all made up, we went downstairs. While we were eating eggs and drinking coffee her husband Mike called. She put him on speaker. “You got this,” he said. “We got you.”

After breakfast, Michael Stephanone picked me up from the hotel to take me to campus while Dawn prepared for a five-hour drive back to Michigan. As I got into his car, I felt so grateful that because of her I hadn’t had a minute alone to worry that I wouldn’t be able to do well, to feel lonely, or to get overwhelmed with emotion and fear. I didn’t want anyone on the SUNY Buffalo campus to know anything because I didn’t want to seem weak or unfit to travel and excel. Since Dr. Gurule said I’d need two weeks to recover from the brain surgery, I didn’t see what difference it would make to Dr. Stephanone, because I would have plenty of time to get ready and healthy in time for the August start date, I was thinking. Once I got the offer, all I had to do to get ready was re-home my pets and sell my house and car. I knew I could do all that with time to spare.

The day on campus began with an interview with the department chair who specialized in non-verbal communication. He was a white man in his sixties or seventies who felt the need to point out a picture of his black wife, on his desk, and mention to me that he felt black women were the most beautiful, a statement wondered if he would have made to a white or male applicant. After that, I had half-hour long interviews with a few other people, and then it was time to go to a windlowless basement classroom. The professor was having students do presentations on communications careers that interested them for the first half of the class, then I was introduced as a job candidate who’d be lecturing to them for a while so that other members of faculty, of which about four were present, could assess me as an instructor.

I got up to get started. I had the PowerPoint on my flashdrive and I plugged it in. Normally at ease in such situations, I felt very wobbly standing. Lecturing in general felt natural and familiar, even though it had been five years since I’d been in a classroom. During the presentation, students were participating, raising their hands and getting involved. I’d heard two students’ names spoken in the early part of the class and called them by name when they raised their hands to make comments or answer questions I posed to them during the Nipplegate PowerPoint. While using the technology, I struggled and stumbled when advancing from one slide to the next a few times, but I felt the material was generally well-received. After the presentation I had lunch with two junior professors who’d taught in Singapore. They raved about what a great time they had, how many other countries they had visited, what the food was like, how clean of a city it was. After lunch, I met with two more people, one a dean of international student travel. I thought the interviews went great overall, and knowing I had a good shot at getting the job gave me a handhold on optimism that kept me going while I waited to find out if I was selected.

Shortly after Dr. Stephanone dropped me off at the airport with handshakes and well-wishes, I checked in at the gate, feeling like a winner. That was the exact moment that another passenger, rushing to board the flight, hit my head with his carry-on bag and knocked me over. He apologized, looking wide-eyed with concern, even more so when he noticed that I had on an eye patch. He tried to help me up but couldn’t because that was the moment that I lost it. I had held it together for so long, but I couldn’t anymore. I made him go away and then I began crying and freaking out to an airline staffer. I was placed in a wheelchair and escorted onto the plane.

Chapter 5

OSIS

I got a ride home from the passenger next to me on the plane and spent the next day, a Saturday, recovering. The next day, the Sunday before the retina surgery, I was not only blind out of my left eye, but my right eye was killing me as well. I had begun wearing the patch full-time on my left eye, but my right eye hurt so badly that I decided to keep it closed too. That’s how I was looking when my friend LaMonica came over. She and her family had been the subject of an article I had written a few years before at the Albuquerque Journal, and we had gotten to be friends since then. It wasn’t very often that I became friends with people about whom I wrote stories, but in LaMonica’s case it was a natural result of us having the chance to bond over the article I had written about her family in October, 2013. It was one of my favorites, one of only a handful of tear sheets that I had gotten professionally framed. Back then, LaMonica, whose family had recently relocated from Houston to Albuquerque, had lost her first son when he was only a few days old. Her family made the decision to donate his five-day-old heart, and was gifted to a family in Dallas whose son had been operated on while his mother had still been pregnant with him. He survived that surgery, but shortly after birth, he required a heart transplant. That little baby, Keegan, received the heart of LaMonica’s first-born son. In the process, the two families had formed a holy bond, and they had made plans to reunite at the Albuquerque International Balloon Fiesta and take a balloon ride together with a balloonist from Florida. LaMonica had since had two sons and was pregnant with a baby girl. Because LaMonica’s pregnancy kept her from going on a balloon ride, her mother had gone up in the balloon, along with Keegan’s dad, a few other family members, and the pilot. I joined other family members in a pick-up truck that followed the balloon to wherever it landed. It was an amazing fall day and it was exciting to write about. After that, LaMonica invited me to her graduate school graduation party and her daughter’s baby shower. Her mother, a spunky cut-up, eventually let me call her Aunt Cly. She and her husband, two sons and daughter lived on the west side, a good half hour drive from where I lived near the airport.

LaMonica had offered to come over with lunch and to see if I needed anything before the next day’s procedure. She showed up with Caesar salads from a local Italian restaurant. I felt relieved when I saw her car pull up in my driveway. As soon as she came in and gave me a hug, I started sobbing without expecting it. Hearing her voice as I stumbled around made me realize how scared and upset I was. The fact that both of my eyes were closed changed the tone of the visit from a get-together to cheer me up to the wellness check of a helpless shut-in. She fixed me a plate, asking where I kept dishes and silverware. She led me to the dining table, telling me how many steps I had left. She told me my cell phone was at 3 o’clock, to the right of my right hand. She asked me if I wanted her to put more salad on my plate and told me what it was I was putting on my fork – a piece of chicken, a crouton, an olive. After we ate she asked me if there was anything else she could help me with. I told her that I needed to send thank-you emails to the people that had interviewed me in Buffalo. Dawn had sent me an email containing a post-interview thank-you letter template that she came up with, which LaMonica helped me personalize and send to each interviewer. I dictated as she typed on my laptop, then she read back to me the draft, all of which took over an hour. I was wearing a pair of dark sunglasses the whole time. She emailed Dawn to tell her we had sent the emails, then LaMonica washed my dishes and covered the food in my refrigerator that I hadn’t bothered to store properly. When she left I felt so grateful for her company, especially knowing that she had a husband and three children under ten at home. The more time I could fill interacting with my friends, the less time I had to dread the next morning and the surgical procedure to my retina.

On Monday, April 24, I went to the University of New Mexico Eye Clinic for the laser surgery procedure. The first thing Dr. Tosi had to do was to numb my eye with a few drops. I liked how it felt for him to stand near me while he tilted my head back and put the drops in. Then he added more eye drops for dilation, which, because of my having a high index of nearsightedness before getting Lasik, it took longer than for most patients. I told him that while I was waiting I was going have half a Xanax, and he said, “Yeah, go ahead,” with an implied, “Who could blame you? Take a few if you need to; tip that whole jar back.” While I was waiting, two correctional officers ushered in a handcuffed, shackled prisoner who was apparently being detained at a New Mexico immigration facility somewhere, for being in the United States undocumented. He came in with blue scrubs and orange flip flops. Two guards held each of his arms, although his hands were manacled. The man, who spoke and looked as if he were from an African country, tried to be pleasant and upbeat, asking specific directions: “Stand here?” “Go there?” The guards were not mean or abusive, but the fact that he was handcuffed in the eye clinic in a foreign country was heartbreaking. Observing him and other patients distracted me from thinking I might never see out of my left eye again.

When my eye was sufficiently dilated, Dr. Tosi took me into an exam room set up the laser surgery apparatus. I sat in a big chair in near darkness. He sat in a smaller chair in front of me and I started to feel the Xanax kicking in. I was grateful that there was the option of this laser procedure, which sounded better than the surgery that Dr. Sanchez had described, with the face-down recovery period of two weeks. The procedure was just a matter of a few popping noises and him holding something up to my face that I thought was a staple gun. This procedure was billed to my insurance for $4,100.

He told me to make an appointment for the next day; thereafter I came every two or three days for check-ups to make sure it was holding. Each visit was extremely painful. It began with the same eye exams, pressure checks and imaging with one of the techs, then going to his waiting room. When he called me in, I sat in the same exam room and he either sat on a stool or stood up, probing into my dilated eye with an instrument that was shaped like shot glass, with a very strong light attached. He held it near the space between my eyeball and my eyelid, then rotated it all the way around slowly. As this was happening, he told me where to look: up, top right, right, bottom right, down, bottom left, left, top. It hurt while he was doing it and afterward, and the heat from the light made me sweaty. My hands usually felt shaky and I had a hard time breathing. Usually I asked to take a break halfway, unless I had taken a whole Xanax before getting there and timed it so it didn't wear off during the exam. Each time I went, he gave me a percentage of how likely the laser surgery would work. The number increased each time from 50 to 60 to 75 percent.

When I was still waiting for my brain tumor surgery consultation, going to Dr. Tosi a few times a week and anticipating success with the laser surgery, I had something else on my plate: May 1, 2017 would be the first day of a month-long solo art exhibit I was having at the Los Griegos branch of Albuquerque Public Library. I had applied a few months before the brain tumor diagnosis to display my work on a two-tiered wall where every month the work of a different local artist was displayed. Shortly after, I got an email saying I was chosen for May. Since moving to Albuquerque, I’d been in about ten shows – some solo, some group. This would be my first solo show in about three years. It was going to be impossible to hang it myself with a detached retina healing, brain tumor surgery pending, and all the confusion, anxiety, fear and instability that went with it. I asked for help from Christy. She was my former study partner who had completed her physical therapy studies and was going to start a new position doing physical therapy at a large health facility in a few weeks. Her ex-husband John, a doctor at the University of New Mexico, and she remained best friends while co-parenting their son, who was then fourteen years old. Christy said she could help me hang my show.

On May 1, she came over and we loaded up my trunk with two dozen pieces of my artwork. She drove my car to the library, with me in the passenger’s seat. Driving with only one eye had become scary for me and I only did it when I had no other choice. I was well-medicated with wrap-around shades over my patch. We placed all the pieces on a display table. Just that much drained me of my energy. This type of drainage felt the same as how I felt in the days after tangling with the Thug Wave -- standing up was a struggle I was no match for. I had to sit down. I wanted to be the person deciding where pieces went and at what distance, but it was not possible to stand up long enough, so Christy did everything. She asked how she should group them, and I told her to hang them however she liked. I was about to fall asleep and could not possibly have cared less. It only took about a half hour to get all the work hung. I was so exhausted when I got home that I had to lay down to watch “Chopped.”

When I was 80 percent sealed after the laser retina reattachment, I went to the eye clinic to see Dr. Tosi for a final check-up. In addition to smoking medical marijuana in my car and parking in the same part of Lot K every time I went there, I also only dressed in solid colors, either the same color shirt and pants, skirt or capris, or a solid color dress. That morning, a tech named Amanda who was excited about my laser repair progress, called me in for the preliminary tests in the dark exam room. I rested my chin here, looked into the blue light there, tilted my head up for the numbing drops and dilation drops, and refrained from blinking while she checked my eye pressure. She printed images of my retina and wrote notes in my folder. She said it looked like I was healed by the laser retina surgery, but Dr. Tosi would double-check with his scope. I felt the technician’s genuine happiness, and I felt happy too, ready to cry with relief, but I didn’t want to believe it until Dr. Tosi confirmed what the screening showed. When Dr. Tosi called me in, he had already looked at these results and was smiling. He said it looked like the procedure was a success and he’d to do a visual inspection to make sure.

He began the hot eye treatment with the shot glass. He was mumbling as he had me look from top right to top center, “Umm hmm, good, yes.” He only had a few more stops to make on the trip around my eyeball when he groaned, “Ahh!” He looked at my eye like it was the devil, then his face deflated. He kept going and groaned again a few seconds later. Then he told me what his examination had uncovered: my retina had ripped in not one, but two new spots, not observable by the scans taken by the tech before, and located in remote areas where laser surgery was not an option.

At first I had one retinal tear. Now I had three.

I didn’t want Dr. Tosi to see me crying. I turned to look away and I cried. I was devastated. He passed me a box of tissues and told me he was very, very sorry. I could tell he was disappointed. I went immediately into a state of emotional despair. How could this be happening? Haven’t I got enough shit on my plate? I couldn’t believe it. The brain tumor seemed like the least of my worries. I wondered if he felt guilty also for suggesting the laser procedure, which made my condition worse. I hadn’t been warned that was even possible. Now I would have to have the surgery. Dr. Tosi said I would only have to lay face down for 20 hours, not 24. That helped a little bit, but I felt like I had been beaten by the whole experience regardless.

The day I learned the procedure failed was a Friday. The emergency retina reattachment surgery would have to be the following Monday, Dr. Tosi’s surgery day. The more time passed after a retinal tear, the less chance it had of being effective. If I didn’t have the surgery right away and follow the post-surgical instructions, I would lose vision in that eye permanently. I was in a total fog for the remainder of the appointment, only able to vaguely process him asking me if I would prefer local or general anesthesia. The only other time I could recall being asked that question was when Dr. Garikaparthi had asked me that hours before using a hook to pull my knee flesh back into position in the Bahamas. I knew then that I’d have only answer to that question from that day forward. “General,” I said.

According to Dr. Tosi’s notes, “Treatment options were discussed with the patient including surgery. The risks, benefits, alternatives, and complications of surgery were described in detail. Complications which include, but not limited to hemorrhage, infection, complete loss of vision and the need for additional surgery were all described in detail. Informed consent was obtained for the above-listed procedures.”

Dr. Tosi also told me he would select among several types of retina surgeries when I was on the operating table. “I’ll know which one when I get inside there,” he said, as if my retina area were a storage closet he’d poke around in. He said one procedure involved him inserting a gas bubble that would dissolve on its own in a few months; another involved inserting an oil sac that would then be surgically removed a week later. I could take in no further information or pay any more attention.

“I’ve done this many times,” Dr. Tosi said while I was trying to get myself together to go with him to see the surgery scheduler. “If anything happens, we’ll deal with it.” He sounded reassuring, but the news canceled the effect of the Xanax and I was so anxious and worried that I couldn’t stop shaking or crying. I repeatedly asked him whether he thought, given the condition of my triple-ripped retina, I would be able to see out of that eye again, and he gave me the exact same answer no matter how many times or how many ways I asked: “We will try to restore you some vision.” Then he walked me to the office of the woman whose job was to schedule retina surgery. He asked her to please on-board me for Monday, and he gave me a gentle touch on the shoulder. The woman I met with could tell I was freaking out and she went out of her way to be nice. Thinking it would be helpful, she said, “If my son had a retina detachment, God forbid, I would definitely trust Dr. Tosi to do it.” This was not comforting; it was unsettling, because what she forbade God to let happen to her son was now happening to me. She passed me a squishy folder with information on how to prepare for the surgery. I could not eat or drink the morning of the surgery unless it was fluid to take prescribed medication. The squishiness was from packs of sterile soap I’d scrub myself with the night before the procedure and the morning of it.

The night before, I talked to Janet. She told me to get on my knees and pray to God, thanking Him for putting into my life all the right people who could get me through this, particularly an experienced surgeon who had done this many times. I became emotional praying at the foot of my bed, which I hadn’t done in years. Although raised Catholic, I had never been convinced my prayers made it to God’s ears. This time, however, I got a very clear message back from God: If you will let me handle this, if you will believe that it is in my hands and not worry about the outcome, I will have my hand on Dr. Tosi’s shoulder during the entire surgery. What other reason would I get this message unless it was from God? I got up teary and relieved.

Since leaving my reporting job, I had been working part-time as a craniosacral therapist, using as a treatment room one of the bedrooms in my three-bedroom house. I usually earned enough money to pay my bills but I hadn’t done much to promote the practice, so I was barely making ends meet. I also relied on my credit card, which had a $7,000 balance by the time I got the eye surgery, as well as withdrawals from my retirement accounts. I couldn’t afford to lose business, and I already had set up two appointments the morning of the retina reattachment, one at nine and one at ten. I conducted myself with both clients as if nothing were out of the ordinary. I treated them and got paid like I always did and waited for the next knock on my door.

Shortly after the second client left, Christy came over at 11:30 to take me to University of New Mexico Hospital’s Outpatient Surgery and Imaging Site, a few miles from my house. We left right away and I took a Xanax in the car. It was reassuring that we could talk without having to touch on where we were going or why. We waited only a few moments before a woman in hospital scrubs took us back to the OR prep room and told me to change into a gown and get on a surgery bed. While Christy sat in the corner, an anesthetist came in who asked me if I was allergic to anything. Then a nurse put in three types of eye drops, one of which she described as jalepeno flavored because it burned on eye contact, every fifteen minutes. Under the influence of the Xanax I told Christy how cute Dr. Tosi was, and I dared her to dare me to ask him to kiss me on the cheek when he came in before beginning the operation. She dared me, laughing because it was reminiscent of the sorts of things we’d be talking about during breaks from memorizing the placement of the muscles in the forearm when we were classmates at Central New Mexico Community College.

“Will you give me ten dollars to do it?”

“Yup, but I’ll give you twenty-five if you ask him to kiss you on the lips,” she said. He came in a few moments later to let me know he was ready to get started. He already had his mask on, covering his nose and mouth.

I tried to keep my mind focused on the fact that Dr. Tosi had done this surgery many times. His title was Director of Retina Service, so he was not doing all kinds of other eye surgeries and getting rusty with his retina skills. The efficiency of his uncomplicated manner during our numerous office visits made me feel at ease about his expertise. However, my case was now more complicated than it would have been without the laser surgery because he was repairing two additional punctures. Christy stayed with me until I was taken into the operating suite. From then until when she picked me up, I remembered nothing of the retinal reattachment that, once he got up inside the white of my eyeball, required a gas bubble insert for a horse-shoe shaped tear.

According to Dr. Tosi’s notes,

General anesthesia with endotracheal intubation was performed by the anesthesia team at the operating room. Time out was performed by the operative time to confirm patient, operative eye and procedure. The left eye was prepped with Betadine and sterile drapes were placed in the usual ophthalmic manner. An eyelid speculum was used to retract the eyelashes from the operative field. Using the 25-gauge suture-less vitrectomy system (surgical instrument with a vitrectomy tip and citreous cutter), an angled incision was made in the inferotemporal quadrant (lower left part of the white of the eye). Insertion trocar (sleeve) was placed at the site. An infusion cannula (tube) was connected to this. Tip of the infusion was verified to be within the vitreous cavity by direct visualization, then the infusion was turned on. Two additional sclerotomies were made in a similar fashion; one in the superonasal and one in the superotemporal quadrant. …Using a light pipe and vitrector (tool used to cut the citreous humour for subsequent removal) and the BIOM wide-angle viewing system, a core vitrectomy (surgical removal of the vitreous humor gel that fills the eye cavity to provide better access to the retina) was initiated. Kenalog diluted 1:5 with sterile BSS was injected to improve the visualization of the vitreous strands. ILM forceps were used to peel a macular epiretinal membrane. During the exam of the peripheral retina the presence of multiple, inferior retinal holes were observed, as well as a horseshoe tear located at 5:30 o’clock and at 1:30 o’clock. The lesions were marked using endodiathermy, which was also used to create a superior nasal posterior retinotomy. The retinotomy (cutting of the retina) site was performed at the equator at 2:30 o'clock. An air-fluid exchange was completed using the retinotomy site and all fluid was removed. Focal endolaser photocoagulation (sealing leaking blood vessels in the retina) was performed around the retinotomy and the retinal breaks. The rest of the retinal periphery was examined and there were no retinal breaks, but almost 360 endolaser was performed prophylactically since the patient has multiple retinal atrophic holes. A gas exchange was performed using 16% C3F8 gas mixture. The cannula was removed from the eye and the superior nasal sclerotomy was closed using Vicryl 7-0. There was no evidence of wound leakage. Intraocular pressure was checked by palpation and with the Terry-Barraquertonometer lens and was found to be satisfactory. Then, the eye was treated with a subconjunctival injection of Ancef and dexamethasone. A patch and shield were placed. The patient tolerated the procedure well and was transferred to the recovery room in stable condition.

When the procedure was over, Christy picked me up after having gone to my pharmacy to get the three different eye drops I’d be using while I recovered. When she dropped me off at home, I felt numb to everything, including my new routine of laying face down for 20 out of every 24 hours and using three eye drops four times a day: an antibiotic, a steroid for cell regeneration and a dilating agent for vision restoration. That evening I took a sleeping pill or two. I turned the massage table I used for craniosacral therapy into my new bed. I attached the face cradle, carried in some blankets from my adjacent bedroom and went to sleep face down. I was in bed early because the next morning was my brain surgery consultation.

6.

Consultation

The next day at 2:30, I went to Lovelace Health System’s Neurosciences Center to meet neurosurgeon Dr. Mark Bryniarski , then 55. Although Dr. Gurule had said the “let’s see if it grows any bigger” approach was an option, it was not one I wanted to consider. It was clear to me that my emotional and behavioral issues were tumor-related, so the question for this appointment was what type of surgery I would have, not if I would have any. Reading online, I had learned that one option was called Gamma Knife, also known as radiostatic surgery. It used radiation to get rid of tumors that were either deep in the brain and/or relatively small, which mine was not. I was therefore thinking the traditional surgery was the better choice. That involved cutting open the brain and taking the tumor out with surgical instruments and closing it back up.

I went in for a pre-consultation check-in with a medical assistant who had on long fake fingernails. She was called Samantha. She was checking my vitals and putting information into her computer when a man wearing hospital scrubs and suede fringed moccasins came in without knocking and asked her to speak with her in the hall. He didn’t seem to recognize that there was anyone else in the room. When Samantha came back, I asked who that person was, and she said that was Dr. Bryniarski. When she was finished inputting my information, she sent me to exam room 5, and Dr. Bryniarski came in a few minutes later. He was a tall, youthful 55-year-old man with brown floppy bangs that looked like Howdy Doody and a space between his front teeth. From Krakow, Poland, he came to the United States about 25 ago and spoke English with a slight accent. When I showed an on-line picture of him to my friend Jennifer, she described him as a doofus.

We’d just introduced ourselves and gotten the appointment underway when my phone rang. It was the University of New Mexico Hospital’s brain surgery scheduler, calling to set up my brain surgery consultation there. I answered her call because I’d had difficulty reaching her in recent days. I’d submitted referrals for brain surgery consultations to both Dr. Bryniarski and to the University of New Mexico Hospital, or UNMH, to improve the chances of getting the earliest surgical date. Now that I was meeting with Dr. Bryniarski, I didn’t know if I needed to shop around. But since I’d been waiting for this call for weeks, I wanted to see what she could offer. I expected her to quickly propose a consultation date and time, but instead she said, “Hmmm, let’s see, let’s see . . . when is there an opening?” As Dr. Bryniarski sat on his stool watching me, I could hear her clicking buttons on her computer. “Let me switch screens,” she murmured, clearly in no hurry. Her not having figured out what day was available before calling me was taking up a lot of time, which made me so abrupt answering her questions that she said, “You’re being rude.” The earliest date she could offer for my preliminary consultation was May 16th. I made the appointment, thinking I could cancel it later, depending on the timeframe Dr. Bryniarski might have open.

“And what was that about?” Dr. Bryniarski asked. He’d made eye contact with me during the call, sometimes smiling for no reason.

“That, um, that doesn’t concern you.” I was surprised he asked. This was a bread crumb dropped from the loaf of his unpredictable weirdness, leading me down a trail that would end with me cross-examining him in a downtown Albuquerque courtroom five months later.

The occasional pointless smiling continued as Dr. Bryniarski explained that I could leave the tumor where it was, have Gamma Knife surgery, or have traditional surgery. I felt like a diner trapped in a waiter’s diatribe about the day’s specials. I was trying to hurry him through the details so as not to waste any of the four hours that day that I was allowed to be upright. I had already read about everything he was telling me anyway. “Do you not want me to go over these different surgical options for you?” Dr. Bryniarski asked me. “You just want me to get my appointment book and schedule you without explaining all of this to you first?”

“Um, basically, yeah,” I said.

Dr. Bryniarski went on to tell me that meningiomas were his specialty, and that he had done extra training in meningioma removal, and that on his website there were some videos of him performing the surgery. He said he’d never lost a patient to death or put a patient in a coma, which made me wonder if doctors who had lost previous patients disclosed this. During the appointment, Dr. Bryniarski said several times that he didn’t believe the personality changes I described were related to the tumor. Like Dr. Gurule, he thought the symptoms -- mood swings, crying all the time, isolating myself, having difficulty concentrating -- all spelled PTSD.

I told Dr. Bryniarski that I’d read online articles about brain tumor symptoms, and consistently, change in personality was listed as one of them. He asked me what personality changes I had noticed. I used the example of the brain surgery scheduler who called earlier telling me that I was being rude. He smiled as if amusedly thinking, “Being rude to a scheduler means you have brain tumor symptoms? What nonsense!” That made me too uncomfortable to continue with any additional examples. I didn’t want to tell him that I couldn’t read or speak the way I used to, or that I’d spent three days in the mental hospital around the corner from his office seven months before. I didn’t care if I changed his mind about my symptoms being PTDS-related. I didn’t need him to. I needed him to know how to use the instruments required to unlock my skull, dig the tumor out, and close it. I was not there to make friends. I told him that I had done a lot of research and that I had read in numerous reputable medical journals that the symptoms I was having were tumor-related.

“Oh, OK, well, I didn’t know,” Dr. Bryniarski said nonchalantly. He didn’t know what the symptoms of brain tumors were? That’s what he appeared to be saying, although he had bragged about being an expert in the meningioma. If I hadn’t finally attached my recent uncharacteristic behavior to the tumor, and if I hadn’t felt strongly that the sooner I got rid of it, the sooner I could live again, I probably would have ended the appointment and waited for my consultation at UNMH. But I was so flummoxed by the tumor itself, and so impatient to be rid of it, that I didn’t care that he was admitting that he didn’t know what the symptoms of a brain tumor were. He went to check with Samantha regarding surgery openings, and then came back to say that he could operate on me on May 22, which was 13 days away. I was so happy and relieved and grateful and excited. He seemed pleased that we could set a date. He told me that his assistant would be calling me to schedule a pre-op appointment to occur shortly before the operation. We went back into his office for a few moments before I left, and Dr. Bryniarski went over some precautions.

According to Dr. Bryniarski’s notes:

Elaine Tassy is a 49-year-old woman who comes to my office because of a recent diagnosis of intracranial meningioma. She has had headaches since high school, however the has become more pronounced over the last 2 years, along with the new symptoms of dizziness, episodes of confusion, decreased memory, changes in personality including being forgetful, more irritable, increased difficulty in learning, mild imbalance. She was evaluated by a neurologist, Dr. Gurule, was sent for the MRI of the brain which revealed a large right parietal meningioma. She had had MRI of the brain in 1996 which was negative. She was also recently diagnosed with left retinal detachment and yesterday underwent surgery by Dr. Joaquin Tosi . . . I have reviewed her recent MRI of the brain from April 10 . . . There is a moderate size, about 3 cm in diameter, uniformly enhancing extra-axial tumor in the right parietal region, parasagittal, attached to the superior sagittal sinus. Findings are highly consistent with intracranial meningioma. There is no evidence of brain edema, there is no mass effect, there is no midline shift. Impression: Right parasagittal parietal meningioma. . . I have had a very prolonged discussion with Elaine regarding her intracranial meningioma. There is absolutely no reaction from the brain, her symptoms may or may not be related to her meningioma, and she does not have any findings on neurological exam. One option to consider would be an observation and repeat the scan in a few months to see if there are any changes. We have discussed the other option which would be stereotactic radiosurgery, however tumor is probably too large and it would not be eliminated just with stereotactic radiosurgery. Finally, we have discussed potential surgery which I think is quite appropriate for a large tumor in a young lady, even asymptomatic. Elaine is quite adamant about surgery, she is quite convinced the tumor is causing certain symptoms and she really would like this tumor to be taken out. I think is quite appropriate . . . We have discussed benefits and risks of surgery including: Inability to remove the whole tumor, residual tumor especially attached to the superior sagittal sinus, intracranial hemorrhage, stroke, left-sided weakness or paralysis, left-sided sensory change, infection including meningitis, cerebrospinal fluid leak, coma, or even death. She understood and would like to proceed with surgery. We are going to schedule her for right parietal craniotomy for May 22 with intracranial neuro navigation. Before surgery will perform magnetic resonance venogram to evaluate her sinuses.

After our appointment concluded, I went home to resume laying face-down so my retina could reattach. With the help of Xanax, I was in my numb place, absorbing all the information about the surgery without thinking about the details or feeling their weight. Relieved to have a surgical date, I didn’t linger on the ways in which I had been surprised or concerned about Dr. Bryniarski’s lack of knowledge of tumor symptoms or the strange smiling. Later that day, I called UNM Hospital to cancel the consultation. I knew if that consultation wasn’t until May 16th, surgery probably wouldn’t happen there until after the date Dr. Bryniarski gave me on May 22nd. Because his sub-specialty was meningioma, I was confident with the decision to select Dr. Bryniarski without a consultation at UNMH first.

This was a decision I would live to regret.

On May 11, three days after the eye surgery and two days after the brain surgery consultation, the thunderclap of health issues was too much for me to process. My therapist, Karee, had been insisting that I tell more people and accept more support. I had initially been reluctant, not sure I would get much of a reaction. But shortly after the retina surgery, I got on Facebook thinking about telling my 530 Facebook friends, many of whom I hadn’t been in recent contact with, so those who wanted to could reach out to me with support.

In addition to needing support, I wanted people to know what was going on for another reason: I had read an article about a local actor who’d played a small role in the cable TV show “Breaking Bad” which had been filmed in Albuquerque. He’d played the oncologist of the main character, Walter White. I had met him about three years before when I was having coffee at a Starbucks near the Albuquerque Journal with a mutual acquaintance. He had stopped by our table to say hello to his friend, a member of the same gym, and he introduced himself to me. He was close to my age and worked across the street from Starbucks. He also hosted a radio show to supplement his acting, and he had two kids who lived out of state.

The Facebook article said the actor, whose name was David House, had had a seizure that dropped him to the ground. He was pronounced dead at the hospital from an undiagnosed brain tumor. Reading about his sudden death made me want to tell the people I knew but wasn’t currently talking with regularly, because the same thing could happen to me. 

I wasn’t very active on Facebook, but that evening I posted on my timeline a picture of the MRI, in which a large white circle occupied the top right corner of my brain. I wrote:

I choose to win. I am better, stronger, and more powerful than my golf ball sized brain tumor. One of us has an expiration date of May 22, and I'm not the one. There's only room for one of us in my brain, and it's not you, tumor. You are soon to be sizzled into oblivion; don't let my skull flap hit you on the way out. Like if you agree.

I started getting likes and replies immediately. For the rest of the day and evening, and throughout the night, I saw “a friend is replying” on my screen and I heard clicks on my cell phone alerting me to inbox messages. Within about 24 hours I got over 100 likes and about 70 comments and a dozen messages. Some were people I talked to regularly who already knew what was going on; many others were friends from other periods in my life I hadn’t been in contact with lately; elementary, middle, and high school in Montclair, New Jersey, college, graduate school, my Los Angeles Times traineeship, the Baltimore Sun, the Albuquerque Journal, and friends I had met doing articles, and others within the yoga world. Maybe five percent of the responses were from people I was friends with on Facebook but had never met personally. I had never posted anything that had garnered so much attention or support, and I had no idea how hungry I had been for it until I saw who responded and what they had to say. I heard from people I had only known in childhood. Their offering of support and well wishes showed me many people I’d known, how many places I’d lived or traveled to, how many adventures and fun times I’d had.

                Praying for a speedy recovery! said Robin Wyatt Trawick, whom I had lived across the street from when I was born in 1967 until my family moved five years later. One of her relatives taught me how to tie my shoelaces in her living room. We had re-connected when I was a senior in high school and she was in college studying to be the teacher she is now, when we had part-time dietary aide jobs in a Montclair nursing home. When her father walked her down the aisle at her wedding, she had waved at me.

In my prayers, wrote Hilary Hochman, another one of my first childhood friends who was in a school play with me in elementary school.

Praying for your quick recovery! Love and hugs to you! Great attitude! wrote Beth Cannarozzi, an elementary school classmate. She and I had taken our First Holy Communion together at Immaculate Conception Church in the 1970s, and made our First Holy Confession and Confirmation together as well, but by high school we had lost touch.

One of the most intense wall posts was from a middle school classmate, Pauline. Between fifth and eighth grade we went to Mt. Hebron School, where I was often teased for sounding like a white person. A few middle school classmates who years ago had been involved in the mockery posted emojis of prayers on my timeline and sent well wishes. In sixth grade, a rumor had circulated that I had a crush on a biracial boy named Chuck, who also talked like a white person and would therefore be a good match for me, my peers apparently thought. Someone had written in pencil on the bathroom wall: “ET + CA= Puppy Love.” At the end of social studies class, I broke down and started crying. Our social studies teacher asked me if something was bothering me, and I said: “Yes, something is bothering me! Everyone says that I like Chuck, and I don’t!” The teacher told Pauline to take me to the bathroom and help get me together. She was one of the people who believed I loved Chuck, so when she took me to the bathroom she said, “Elaine, I’m sorry!” That was the first and most sincere apology I had ever received. She held my glasses as I bent over the sink to wash my face, and then she walked me to my next class. She and I had not spent much time together outside of that encounter, so was moved when she replied:

I come against every tumor cell that has attached itself to your brain. I cancel every assignment that Satan has against you in the mighty name of Jesus. You shall live and be in good health. No weapon formed against you Elaine shall prosper. Be encouraged. God's got you.

That had a really strong impact on me. Just that message alone made posting worth it.

You got this. That tumor is goin' outta here! wrote Eunice Dubuque, another childhood friend who, like Pauline, had faded from my current life. That was the first time I heard from Pauline or Eunice since we had grown up together in Montclair.

I'm so sorry you have to go through this! You go girl! said Andrea Lustig, a high school classmate who had been a close friend until we went to different colleges and lost touch. During the school day if we had free periods, once she learned to drive and had a car to use, we had gone to her house in the middle of the day to watch “Wheel of Fortune” in her kitchen while her mother, a historian who worked from home, asked us what we were up to and seemed not to care that we should have been in school. If her father had ever answered the phone when I called her, he always recognized my voice. I mentioned that to Andrea one time and she said it was something PR people like her dad had a knack for. She thought I would be good at public relations, and, after college, I worked briefly in that field.

Within one hour’s time, I heard from a handful of classmates from Wesleyan University in Middletown, Connecticut. During my four years there in the mid-eighties, I had so many first-time and meaningful moments with classmates; I spent a semester in France; I completed a double major in English and Cultural Politics while working two par-time jobs, I lived through embarrassing, drunken moments, and I was in two theatrical performances.

Kelli Craig-Henderson, who I’d met at the very beginning of freshman year, who I’d hung out with a lot the summer I lived with Stephanie in Manhattan, wrote:

God bless you Elaine.

Stay positive! Sending you healing energy across the miles, wrote Marla Powell, a college classmate from Ohio who had been Kelli’s roommate. Marvin Bazemore, a New Jersey classmate I had hardly gotten to know wrote, Thoughts are with You. You got this! Medina Tyson Jett, a woman who sailed through a social policy class I had struggled in, wrote Praying that words become reality Elaine Tassy! I hadn’t seen Marvin or Marla since college. I’d seen Kelli in the mid-nineties, and I had bumped into Medina at a surprise party for another classmate in Manhattan a few years after we graduated, but since then we’d all grown apart. Hearing from them reminded me of how much fun college had been, and the fact that they all reached out at almost the same time made me feel like I was surrounded by a community that still cared about me.

That's the spirit Say goodbye to that tumor on 5/22! Praying for your health, healing and happiness! You got this!!! wrote Gwen Lymon, a college classmate of Stephanie’s who had become a friend of mine as well. My photo album contained pictures of Stephanie, Gwen and me hanging out in my Brooklyn studio apartment a few years after I graduated from college, and another of us in Prospect Park. At that time. I was working as a publicist at Planned TV Arts, a small Manhattan public relations firm, just like my high school friend Andrea Lustig had predicted. Gwen had moved to New York from Mississippi to get a Master of Social Work degree from New York University, and since then had lived in Westchester County and worked as a social worker in the public school system. Gwen and I had talked on the phone once about my tumor diagnosis already, and I had burst into tears when we hung up. I often felt most vulnerable and alone at the end of conversations like that.

Thinking of you, Sending love and belief in your strength and health. wrote Pamela Johnson, a friend from a job I’d had in Washington DC in the early nineties after moving there from New York. It was a job in a school-based program where Pam was then a social worker-in-training.

From Washington DC, I had moved to Los Angeles for a journalism training program at the Los Angeles Times, which began in 1993 and ended in 1994. On my cross-country drive, I had met up with Kelli, my Wesleyan friend who was then a graduate school at Tulane University in New Orleans, and the families of Gwen and Stephanie, who were both from the Mississippi Delta and had large families who I wanted to meet. For part of the yearlong training program, I was mentored by Rebecca Trounson, who had sat in a work cubicle opposite mine. Thinking of you, Elaine! I remember how strong you are! Becky wrote.

When the program concluded, I began a job at the Baltimore Sun. A Washington DC friend named Eleanor had come with her then-boyfriend James to pick me up from Baltimore-Washington airport. They had taken me to the hotel which the Baltimore Sun put me up in for the first week until I found an apartment. When they got married, I wasn’t able make it to the wedding, but I wrote a poem full of jokes about them, which her maid-of-honor had read aloud to great laughs at the ceremony. She wrote on my timeline: Elaine, Its been a very long while since we last connected, too many years, and yet I am sending prayers and wishes for healing, recovery and restoration. You are strong and have always been. May God's strength be enhanced through you.

Working at the Baltimore Sun, I had gotten to know Lisa Respers France, a Baltimore native who had participated in the same Los Angeles Times training program as I had and gotten a permanent job there as a reporter one year after I did. Around the time she began working in the same newsroom as me, my eye doctor had suggested an MRI because of the headaches I had been experiencing then, and when I got back to the newsroom after the scan, she was the first person I told. I asked her if she’d carry out my final wishes if I didn’t survive. Her eyes got wide and round, and she said, “Of course!” I wondered if she remembered that conversation when she wrote: Sending you healing energy.

I read more messages from people from subsequent stages of my life: classmates from Ohio State University, where I got a Master of Arts degree in Journalism after spending four years at the Baltimore Sun, as well as colleagues and students from the seven years I spent off and on teaching journalism at colleges and universities in the Philadelphia area and in The Bahamas. Shortly after graduating from Ohio State, I spent a month at a writer’s colony in 1999. There, I met the poet Tara Betts, who posted: Yassssss, GTFOH, non-rent-paying growth.

A decade later, after I had been teaching for a while, I went to a journalism training conference in 2008 or 2009 and met a trainer named Katy from Wisconsin who helped journalists learn new technologies and social media techniques appropriate to reporting. I had spent maybe ten hours in her company almost a decade before, but she still found time to write: Love "don't let the skin flap hit you on the way out." All strength and love. I choose to win with you!!! 

I had a few Facebook friends who I had never met personally, friends of friends or friends of former colleagues. I heard from a few of them as well. Dr. Srikanth Garikaparthi, the reconstructive plastic surgeon who had spent all night sewing my legs back together in the Bahamas, also contacted me. 

Hey Elaine Tassy. You can do this. Remember your adventure on the rocky shores of Nassau and you survived that. My best wishes and prayers.

After teaching for one year at the College of The Bahamas, shortly after my adventure on the rocky shores of Nassau, I had an interview at another school and was accepted. I got another year-long visiting professorship at a college in New Jersey, then, after some more traveling, relocated to Albuquerque, intending to become a nurse. My instructor in psychology, one of the nursing school prerequisites, used to say hilarious things during lectures. Once, when a student asked a question, the answer to which she had just elaborately explained, she said: “Note to self: take two menopause tablets before this class, not just one.” She was a proponent of positive psychology, and one day she had invited Christy and me to her house for salmon burgers cooked outside on her grille. That was one of very few professors whose homes I had been invited to without an occasion. She wrote: That's the right attitude! May 23 will be your strongest day yet. Sending love to you, Elaine. My cousin wrote a post that said: “You’re a Tassy, and we are tough as nails.” She was the only Tassy to reach out via Facebook.

Each time I checked Facebook in the days after that post, I cried with disbelief that so many people, in such a short amount of time, whom I didn’t expect to hear from, were reaching out to let me know that they were thinking of me, that I was a winner, that I was always strong, that I was in their prayers, that they were hoping for a speedy recovery, that they wished I was closer so they could be with me and help me get through this and that they cared whether I got better.

In the two-week period between the retina surgery and the brain surgery, I had to go in to see Dr. Tosi several times so he could examine my eye to see how the retina reattachment was healing. Sometimes I drove with my eye patched; sometimes, because I felt like I was putting myself and other drivers at risk driving with one eye patched and a brain tumor, I called for rides to UNMH Eye Clinic from drivers provided by my state health insurance, who functioned like a free Uber system as long as I arranged the ride three days in advance. Other times, I asked friends like Janet or Christy, but they had full-time day jobs. A few times I arranged for a ride one way to the hospital, and then got a ride home from my friend Yahya, whose graveyard shifts as a pharmacy tech in the same hospital often ended around the same time as my eye exams. When I asked Dr. Tosi whether he thought it was OK for me to drive, and he gave me a perfectly neutral answer: “Some people do it.”

Laying face down for 20 out of 24 hours per day was much easier than I had imagined. I was exhausted and drained all the time anyway, so being required to lay down gave me a good excuse to rest. I told him while he examined my eye that sometimes when I woke up from the massage table, my face was turned partially toward the left or the right within the face cradle. He said that was fine, as long as I was on my stomach and face-down to encourage blood flow to the eye to give the retina the best change of wrapping itself around the gas bubble. The surgery would be at risk of failure if I slept on my back, and blindness in my left eye would be a near-certainty.

Dr. Tosi knew I was having brain surgery on May 22. When I asked him if there was anything that the brain surgeon needed to know or do differently because I had just had retina surgery, he told me the anesthetist could not use nitrous oxide. That was the type of gas in the gas bubble in my eye, and if it were used as an anesthetic, it would corrupt the gas in the bubble. I asked him for his cell phone number in the case of some lack of knowledge about this, which he gave me, along with a green wrist band to wear to the surgery. It had printed on it a precaution about nitrous oxide. He said he’d talk to my brain surgeon before my surgery date. At the end of the appointment, he handed me a yellow slip with the date for our next appointment. He’d written May 26, which would be four days after the brain surgery. The average hospital stay after having a meningioma removed was between two and seven days. I intended to be released by day two, but I didn’t know if that would happen. I could still be in the hospital on May 26, and if I was already discharged that would mean I would have been home for only between 24 and 48 hours. I told him all of that, thinking he would push the appointment date back a few days.

Dr. Tosi patiently listened to me and observed with full eye contact as I pleaded my case for an appointment that wouldn’t occur so soon after the brain surgery. Brain surgery was no reason to get off-track with the follow-up appointments he had planned for me, he seemed to be thinking. He wasn’t finished treating me, and evidently, he wasn’t about to be upstaged or pushed aside by another surgeon, and therefore I needed to wrap my schedule around his expectations, brain surgery or none. He gave me the time to talk about how hard this would be for me, but changing the datae was out of the question. He even nodded a few times while I pleaded, beseeching with him to let me come after I’d had some time to recover. Then he handed me the yellow slip and suggested I go up front to the patient care coordinator, who’d let me know what slots he had open on May 26 so I could pick the time I preferred.

Between the retina and tumor surgeries, I also had an appointment with my psychiatrist, Dr. Eva Velasquez, who prescribed my medications for post-traumatic stress disorder and anxiety. She had lived in Albuquerque at one point, but now she lived in Seattle and met clients via teleconference. We usually met three or four times per year. When I went in this time, I sat bent at the waist and looked at the floor, rather than looking at her on the computer screen, because I didn’t want to interrupt the retina reattachment surgery healing. I kept on the wrap-around sunglasses which helped with post-surgical light sensitivity. She was surprised that I’d just had one surgery and was about to have another. Usually, she wrote everything down on her computer, but I saw her writing something on a Post-It. Later she told me she wrote down my surgery date and time and prayed for me whenever she looked at it. She was aghast to see me like that. I asked her to increase my prescription for Xanax temporarily due to the surgeries. Although she usually wanted to discuss medication changes, this time she doubled my dosage for the next two months, telling me that obviously this was a very anxiety-ridden time for me, as it would be for anyone. I felt relieved I didn’t have to explain.

I found ways to fill my days while still remaining face-down. As long as I was bent at a 90-degree angle, I could ambulate standing up. My back yard had a lot of weeds, and I found it refreshing and soothing to be outside in the days following the eye surgery, bent at the waist pulling weeds. The first few days, I felt as if I had been punched in the eye, and it hurt in radiating waves out to my eye socket and cheekbone. After about a week, all I felt was tightness and discomfort to my eye, which I kept patched most of the time. Bent at the waist like a right angle, I pulled weeds for a few hours every few days when it was warm and sunny. I had suspended my craniosacral therapy practice and had a lot of time to kill. Besides gardening, I also watched DVDs and YouTube on my laptop by putting it on the floor, then sitting on the couch with my upper body bent on top of my legs. I felt drained and exhausted from everything, so I slept easily for a long time. I took a prescription sleeping pill almost every night before getting face down on the massage table and falling asleep with my face in the detachable cradle.

The night before surgery, I had a meaningful conversation with Brenda, my supportive companion at the hospital after the Thug Wave in the Bahamas in 2008. Brenda happened to be in Albuquerque at the time, visiting her sister Janet’s family, and she called to see if I felt ready. When I picked up the phone I was feeling calm. I wasn’t attached to the life I’d been living, and I was indifferent to whether I lived or died. I didn’t want to wind up somewhere in the middle -- in a coma, paralyzed, blind, unable to move or speak. If my time on earth expired while I was on the operating table, that was fine with me. By that point, I had been shown love from so many people, and I felt confident I’d met many of my life’s goals, so I really had no fucks to give when it came to my survival.

“Well, I’ll see you on the other side,” Brenda said when we were about to close the conversation. She meant the other side of surgery.

“Yup, if I survive the surgery I’ll see you when I get home, if not, I’ll see you on the other side when you get there.” I started to laugh and cry at the same time with nothing to worry about on my last night sleeping face-down on my massage table. Whether I survived or not, either way felt acceptable.

7.

Craniotomy

The morning of the surgery, Yahya arrived to pick me up at the exact time we had agreed to. I had already taken a Xanax or two before he came over, which was probably why I didn’t have memories about what I was thinking or feeling on the way from my house to the hospital, a few miles north on the highway. He hung out with me until I was taken behind the double doors, and I remember looking at his silhouette as they wheeled me away. The surgical prep started with yet another MRI. This one would serve as ground zero, with the images used to guide Dr. Bryniarski around my brain during surgery. It was like the final fitting of a wedding gown. The MRI technician was a kind middle-aged man who asked what music I wanted to hear during the MRI to help drown out the clanking and whirring and snapping noises. I selected Native American flute, as I had the first time with the tech named Elaine. Once he finished with the MRI, I began to hear a whirring sound close to my ear. Without letting me know beforehand, he was shaving part of my head with an electric razor until he had a big bald U of scalp that began on the right side, wound around the back of my head and ended on the left side, about half an inch thick, like a horseshoe. He put whatever dreadlocks came off in the trash. I told him I wanted them back.

He gave them back to me, and I asked for a rubber glove. I stuck each lock down a finger. Now I was in an OR where no one could find me, totally off the grid but well-Xanaxed. I remember the anesthesiologist asking me whether I knew what I was having done that day and wanting to shrug and say No clue. After that, I remembered nothing.

According to Dr. Bryniarski’s notes:

The patient underwent MRI scan of the brain for Stealth computer navigation system. Images were sent to the computer station. She was taken to the operating room at Lovelace Medical Center. General endotracheal anesthesia was induced. The patient was placed in a supine position (lying face upward) with the head placed in a Mayfield head holder, slightly turned to the left. Her head was registered in space and an excellent registration was obtained. All pressure points were appropriately padded. The patient's head was slightly shaved, prepped and draped in a sterile fashion. Local anesthesia was applied. A curvilinear incision was placed over the right parietal (near the side and top of the skull) area. Dissection was performed in between galea (a fibrous tissue covering the cranium) and pericranium (a dense layer of vascular connective tissue enveloping the skull) and skin flap was covered with antibiotic soaked sponge and secured with fish hooks. Pericranium was dissected and a large flap was fashioned and covered with wet sponge as well for future use. Craniotomy (the surgical removal of part of the bone from the skull to expose the brain) was planned according to anatomical landmarks including sagittal suture and also-neuro navigation (radiological guidance for neurosurgery, using information obtained from the MRI). Three burr holes (made with a drill used for creating openings in bone) were placed slightly off the midline along the superior sagittal suture and also one burr hole laterally (sideways) in the parietal area. Dura (the outermost of three membranes that protect the brain, spinal cord, and some nerves) was dissected with Woodson #1 (a stainless steel round-tip blade at a 45 degree angle to its shank) and Penfield #3 (a dissecting instrument approximately 6” long with a curved tip) instruments. Craniotomy was positioned and all four burr holes were connected without difficulty creating a craniotomy flap (section of bone removed and replaced after surgery). Bone was removed aside and placed in an antibiotic solution. A small amount of bleeding was controlled with Surgicel, gelfoams and cottonoid patties. Dura was opened in a semicircular fashion, reflecting it (pushing it aside to gain access to another area) towards the superior sagittal sinus. It was attached slightly to the brain tumor, which was immediately visualized because it was coming to the surface. Border between the brain and the tumor was visualized as well and arachnoid (thin brain membrane) plane was created. Piece by piece tumor was resected (removed) using following methods: Tumor was decompressed (released from pressure) in the middle and samples were sent to pathology with frozen section indicating a benign meningioma. Further decompression was performed using an ultrasonic aspirator (a hollow tubular suctioning and vacuuming instrument using waves and vibrations of 20,000 hertz to remove foreign tissue from the body). Subsequently, tumor attachments to the brain and to the falx (a brain fold that separates the two hemispheres) were coagulated (clotted or congealed) and sharply divided. Also, attachment to the superior sagittal sinus was coagulated and divided as well. Tumor was completely removed from the cavity with no residual tumor visualized. Numerous remaining attachments to the falx and especially to the superior sagittal sinus (cavity along the border of the falx that allows blood to drain) were strongly coagulated. Copious irrigation was performed. No further bleeding was noted. Tumor bed was lined with Surgicel. The dura was reflected back (replaced) and reattached with multiple #4-0 Vicryl interrupted stitches. This was covered with the last piece of pericranium. Bone flap was reflected and secured with titanium micro screws and plates. Copious irrigation with antibiotic solution was performed. Galea was approximated with #2-0 Vicryl interrupted stitches and skin was closed with skin staples. Sterile dressing was applied. The patient was awoken and in stable condition and was transferred to the recovery room. At the conclusion of the procedure, all needle and sponge counts were correct.

During the six-hour surgery performed by Dr. Bryniarski and his physician’s assistant, Jeffrey Haughton, I lost about 1¼ cups of blood; I got about three quarts of IV fluids; and I had a urine output of about two quarts. The physician’s assistant would later tell me that no one participating in the surgery could leave to go to the bathroom between about 2:30 and 8:30 p.m. when the surgery ended.

I woke up in a room on the ninth floor of Lovelace Medical Center. Janet and Brenda visited me shortly after I got back to my room that evening. I could only remember their voices and their presence, but not our conversation. While they were talking, I felt as if the volume in my life had been turned down and I was more of a witness than a participant. Seeing Brenda standing near my bed reminded me of when she was standing by me while Dr. Srikanth Garikaparthi was sewing my leg flesh back on in the hospital in downtown Nassau. Later that night, I found on my pillow a dreadlock, which, I suppose, had not gotten cut off completely during the unannounced haircut earlier that day.

I spent the first night in the ICU on the ninth floor of Lovelace Medical Center in the care of Nurse Amanda Rullo, a dark-haired white woman who looked to be in her thirties or forties. I was one of two patients she was caring for that night. She was in and out of my room every few minutes, twisting knobs, checking levels, fussing over me. I was not aware that I had a catheter that was draining my bladder until she went to adjust or empty it. She was kind whenever she was in my room, small and near the nurse’s station, where noisy activity was distracting. Alone in the room, I realized I was in increasing, and then tremendous pain. Also, my head was too tightly wrapped in gauze. I was in so much pain that one point I was holding onto a washcloth and leaning over the side of the bed crying. I told Amanda that the head wrap was too tight and that I felt like all of my hair was being pulled in different directions. The staples holding my head together felt like knives. Every time she came into the room, I asked, then begged, for stronger pain medication, and I was optimistic they would kick in quickly. During the night at two-hour intervals, she was pushing into my IV strong medications – Dilaudid among them, but they had no effect. I was under the impression that she had refused to medicate me and that she didn’t want to call a doctor to get me medicated – most likely a hallucinatory after-effect of the anesthesia, the interaction of the narcotic medications, and the insult to my brain. I was in too much pain to sleep. I kept asking for pain medication throughout the night. I would later learn that “Cranies,” craniotomy patients who spend their first night post-surgery in the ICU, usually do not ask for any pain medication, whereas I was asking for so much, so frequently, and so desperately that Amanda was afraid she might suspend my brain function. I had asked for more pain medication than any other patient – post-craniotomy or otherwise – in the memory of one nurse who had worked at that hospital for seventeen years, I would later learn. Still, I was in agony and upset because I thought no one would help me. I was so angry that I decided I was going to report her to someone for this. The pain I was in was unbearable.

The TV was on in my room, and she said that’s what was keeping me up, when in fact the TV was the only thing distracting me enough to cope with the pain. My impression was that she thought I would fall asleep when the TV was turned off, but I was afraid if it were off I would fall asleep and then either wake up in screaming pain or not be able to ask for medication. A little while later, Yahya showed up wearing his pharmacy tech uniform of dark blue scrubs with the UNMH emblem stitched on the breast pocket. Amanda mistook him for a Lovelace employee. He asked her where my room was, he told me later, and she replied: “She’s having a panic attack.” He came and found me in distress and tried to help me encourage her to get me some medication. The rest of the night was a blur. Still convinced no one had medicated me, I called the Hospitalist, who said he didn’t handle ICU issues. He referred me to the patient advocate and the nursing supervisor, a woman named Bree.

Early that morning, they showed up in my room and listened to my concerns. I was furious and in agony, and both of them seemed concerned and taken aback. Bree gave my hand a squeeze, and she wrote her name and cell phone number on a pink Post-It. I demanded they give me Amanda’s last name. I didn’t register hearing anyone contradicting my version events, and the excruciating pain was like nothing I could remember in my entire adult life, and therefore, I was sure, she hadn’t medicated me and was going to be reported. There was no way I was leaving the hospital without the ability to complain about this to someone, and to do so I wanted her full name. Bree refused to give me Amanda’s last name, so I asked a few more times, to her increasingly strident refusals. Then I took the wind out of her sails when I told her that getting Amanda’s last name wouldn’t be all that hard to do, whether or not she agreed to give it to me. My intention was to let her know that I would be able to acquire the nurse’s name with or without her help. Bree’s interpretation of this comment, which she allegedly felt threatened by, would show up in an affidavit she would swear five months later, in October, stating that because of what I said to her about being able to acquire Amanda’s full name, I had put her in fear of her personal safety, as well as that of Amanda, other patients, staff members, the parking structure and volunteers at Lovelace Medical Center, where I was immobilized and in agony, convinced I’d been denied pain medications after a six-hour brain surgery.

Dr. Bryniarski came to see me in the ICU that morning as part of his job providing surgical follow-up care. I told him I had been denied medication. I wanted him to share in my outrage, to tell Amanda off and make her cry. On a scale of one to ten, Dr. Bryniarski’s interest in this matter rated a three. While I was telling him that I had been up all night with no pain medication, he was intermittently smiling for no reason. He said he’d tell her I should have been medicated, and that the head wrap could have been taken off without a doctor’s permission. But he did not supervise Amanda, he said. She was a hospital employee; he was a surgeon with the Neurosciences Center located elsewhere on the Lovelace campus and not in charge of how the hospital staff behaved.

Shortly after he left, it was time for me to have a follow-up MRI. I had already told the nursing supervisor and patient advocate that I didn’t want Amanda to be involved with my care anymore, but it was Amanda who showed up in my room and wheeled me to the MRI area. “I know you don’t want me,” she said while she was preparing my bed with another nurse, “but there’s no one else.” The MRI at 7 a.m. the morning after surgery showed the tumor was completely gone. Dr. Bryniarski wrote in his notes:

Scanned from the base of the brain to the apex at 5 mm intervals without contrast. Images were obtained in multiple windows. Dose reductions were obtained using ALARA principles. Pneumocephalus is noted in the extra-axial spaces the vertex. Most of this is in the right frontal lobe region. This is the area where the previously noted meningioma was present. The patient is status post high right parietal craniotomy. No acute hemorrhage noted…Postoperative changes of right parietal craniotomy. Pneumocephalus noted in that area and also in the frontal lobe regions. This was the site of the known meningioma which is no longer apparent. No hemorrhage identified.

Pneumocephalus means air or gas in the cranial cavity because the skull has been disrupted after some head or facial trauma such as surgery. It wasn’t just gas that my brain was filled with, however; it was also goo. According to the healthcare provider who interpreted the post-surgical MRI, fluid was also present:

Postoperative changes including expected mild blood products, mild subjacent sulci (grooves or furrows on the brain surface) and hyperemia (excess blood in the vessels), dural thickening-enhancement, and pneumocephalus (gas in cranial cavity). Mild high right parietal reduced diffusion is post-procedural and likely accentuated by adjacent susceptibility. Combination of fluid and gas appears sub-galeal and crosses midline. Additional susceptibility from surgical skin staples. Diffusion-weighted imaging demonstrates no evidence of acute arterial territory infarct (destruction of tissue due to lack of blood flow). No significant midline shift. The ventricles are stable in size and configuration. No evidence of hydrocephalus (buildup of too much cerebrospinal fluid in the brain). Mild paranasal sinus fluid signal. Trace mastoid effusions (escape of fluid from a temporal bone into the cavity left where the tumor was removed). . .A small posterior-dependent subgaleal collection contains both fluid and gas at this time. . .This case and findings above were discussed with Dr. M.Bryniarski, with neurosurgery via telephone at 0820 hours on 5/24/2017.

After the MRI, I was taken to the PCU, an intermediary room between intensive care and a regular room. I was an emotional mess by the time I got to my new room, which was much larger and not so close to the nursing station as my room in the ICU. My new nurse, appropriately named Charity, tried to work with me, but I was prickly and anxious and very unhappy. Every time I fell asleep, she woke me up to take my blood pressure or temperature. Throughout the day, the bed mattress deflated and lowered, then re-inflated and rose back up. I was trying to cope with these circumstances and my hapless nurse, when my friend Christy showed up to surprise me with a chocolate bar and some funny stories to distract me from my current situation.

That’s when I could maintain my composure no longer. I started begging Christy to get me out of there because I was not going to survive another 24 hours. Meanwhile, nurse Charity lurked in the room, hoping to get a cuff on my arm or thermometer under my tongue, giving me looks that ranged from apologetic to enthusiastic. Anticipating things were not going to work out for Charity, Christy sat down on the side of my bed and turned to Charity. “I’ve known her for seven years,” Christy told the nurse. “Let me handle this, OK?” The nurse left the room. I started crying. I couldn’t begin to explain what I was feeling. I was at the end of my rope. I could still see out of  only one eye; I had not eaten; I was exhausted; I was still furious because I thought that I had not been given medication and made to spend the night up in pain. I didn’t know where or how to begin. Christy hugged me and let me cry. She talked to me soothingly, trying to convince me that I was safe, that I was OK, that I was no longer in the ICU, that I was fine. I continued insisting that I was in danger. Christy attempted a logical, cognitive approach, trying to get me to explain to her what danger it was that I thought would befall me. I didn’t want to hear it; I felt it should have been perfectly obvious to her that I was about to be slaughtered. It took a while for me to be convinced that I could be there in peace and that nothing was going to happen to me between then and when I got discharged. After she stabilized me, I wanted her to talk to me about anything else but what I was dealing with, to distract me with her humor like she had done in the waiting room before my retina reattachment surgery two weeks before. She told me some stories about recent events in her life, at one point acting out a story by standing up, moving her arms, and making different facial expressions that made me laugh. Soon I was distracted and able to feel like I was not about to be forced again to suffer in some way and that I could last through the night.

Shortly after Christy left, the nurse came back in. I told her I needed to use the restroom. I was no longer connected to a catheter, but I was connected to all kinds of monitors, and therefore not able to go far from my bed. She said I could find the toilet folded up inside a waist-high cabinet next to my bed, where tablecloths might be kept in a low dining room breakfront.

Dr. Bryniarski came to the PCU wearing Velcro-closing Teva water sandals and blue scrubs the next morning, May 24. Already that morning I’d had my blood pressure and temperature checked and both were normal. In order to get out of the hospital, I also had to demonstrate to him and the PCU nurses that I could ambulate with good balance, so I was walking in laps around the nursing station with a nurse’s aide serving as my left eye, which was still patched. Dr. Bryniarski looked alarmed to find me out of bed. His head whipped back when he saw me, like he’d seen a ghost. He was surprised I was up and lucid. Most people had to stay in the hospital for between two and seven days post-brain surgery. I was determined to leave right then, about 36 hours post-op. I did not want to be around these people or any strange people. I wanted to be in my own bed, without getting my vital signs checked practically hourly.

I asked him: “Can I please go home?”

“Yes!” he said, surprised to notice in my computerized records that all my vital signs were within a range that allowed him to discharge me. He wrote in his notes: 

The patient has been doing exceptionally well after her craniotomy for meningioma last Monday. Her incision is healing very well. She does not have any neurological deficits. Her postoperative MRI scan showed a complete tumor resection. There is no brain edema (swelling). We will discharge her to home today. I will see her back in my office next Tuesday for staples and in 2 months for a regular follow-up with no images. We will repeat another MRI of her brain probably in about 6 months. We will arrange that through my office.

I called Janet, who was at work and on deck to pick me up. She said she could leave work shortly to come get me and drop me off at home, a bright light I held on to so I could negotiate my last moments in the hospital. As I was gathering my stuff together, a pharmacy tech came to my room to give me medication, which I signed for with my finger on a hand-held device. I did not remember doing this. My clothes were nowhere to be found, so a nurse gave me some hospital scrubs. A nurse’s aide in a yellow smock placed me in a wheelchair and took me downstairs in the elevator, being very careful with me and very kind and soothing. She wheeled me to the paved parking circle, where Janet showed up a few minutes later. The nurse’s aide and Janet took me by the arms and folded me into the front seat of Janet’s car. I must have collapsed into bed as soon as I got home.

That night, I was less frazzled than a person who had just had a brain tumor removed, whose immediate family wasn’t interested and who couldn’t see out of one eye normally would be. I had so many things on my side: God was handling the retina reattachment, I’d gotten the Michael Jordan of brain tumors extracted by a craniotomy specialist, and I was already home, because I was a champ. In two weeks I’d feel all better if what the neurologist said was accurate, and in August, by which time my retina would also have healed according to Dr. Tosi, I’d be laughing about this all the way to Singapore. I had already had the experience of the Thug Wave to serve as a primer, and I saw so many similarities between the two. If I had survived that freakish set of circumstances with the support of the people in the community I had around me and quickly put it into the past, I thought I would have the same quick closure after having surgeries for a brain tumor and a detached retina in two weeks. But the door to the set of freakish circumstances, which I had felt so sure I was about to close with a snap, had only just cracked open.