My brain tumour introduced itself to me on a grainy MRI, in the summer of 2009, when I was 28 years old.
It had been with me from the day I was born. Tumours like mine develop in utero. They are usually discovered in children, but no one could tell me why mine had only been found once I was an adult. It wasn’t cancerous. Perhaps this tumour at the base of my brain, near the pituitary gland, had reached maturity long ago and would never grow further. That would mean I had nothing to worry about. Or, maybe it had just woken up, and was growing for the first time. In three months, I could be blind. There was no way to know.
Certainty only came with surgery, whose outcomes were presented to me in the form of averages and standard deviations. Thirty percent risk of blindness. Forty percent risk of morbid obesity caused by hypothalamic damage. One hundred percent risk of complete pituitary loss, and hormone replacement therapy for life. And the risk of doing nothing? Undefined.
Assessing my type of tumour – which is known as a craniopharyngioma – the surgeons each gave me their different best guesses as to what the risk of inaction was. Those guesses varied wildly. There was no way I could rely on their predictions to make a decision.
What eventually did happen was something none of the experts ever suggested would be possible. Over time I would lose my memory – almost completely – of things that happened just moments before, and become unable to recall events that happened days and years earlier. To the rest of the world, I would become a young man behaving bizarrely, perhaps drunkenly, and I lacked the ability to acknowledge it, or fully explain what was going on. As it grew, eventually to the size of a small egg, the tumour dug a hole in my consciousness, of ever-increasing depth. I became incapable of living the life I had made for myself.
I’ve now been given my health back. Through persistence, luck, and maybe something more, an incredible medical procedure returned my mind and memories to me almost all at once. I became the man who remembered events I had never experienced, due to my amnesia. The man who forgot which member of his family had died while he was sick, only to have that memory, like hundreds of others, come flooding back. The memories came back out of order, with flashbacks mystically presenting themselves in ways that left me both excited and frightened.With my health back, I was able to live a life again, but it’s not the same life as it was before. The tumour changed me forever. And I am grateful for it.
Following my diagnosis in 2009, I lived the next few months of my life in panic and disillusionment, trying desperately to cultivate an outward perception of normalcy. But inside, I was a mess. I constantly worried about my eyesight, conducting comically unscientific checks of my peripheral vision whenever no one was looking. I spent time between meetings at work crying softly in my cubicle. On my most difficult days, I hid in the bathroom, where I could fully dissolve into tears. I spent evenings trying desperately to sleep, for escape, only to be visited by grotesque dreams of death and morbidity. When my anxiety became unbearable, I would feel the impulsive need to take long walks, but this didn’t help, either. The only thing that seemed to provide a temporary relief from suffering was physical exercise, which I would engage in to the point of total exhaustion. I spent the rest of my time alone and afraid. I had become paralyzed by fear. It was all so surreal. I was completely unprepared. This felt like a death sentence.
Looking back at my journal entries from this time, I am struck by how little I wrote about my tumour. Instead, almost all of my writing dealt with my anxieties about life. I was afraid that disability would strike me before I had a chance to make my mark on the world. I was afraid that I would never fall in love, that I would never have time to make a family. I was less afraid of what my tumour could do to me than I was of what I would fail to do because of it.
All the same, I threw myself into my work. I left my job in technology, turning my economics blog into a full-time profession. The blog became a radio program, which I in turn developed into a television news show called Capital Account, broadcast on the RT network.
I once considered those four years after my tumour’s discovery the best and most intense of my life. I thought I had overcome my fears, but really, I had just ignored them. As much as I would have wished it, my urgency for living life did not change the facts of my diagnosis.
For years, I didn’t seem to have any symptoms at all. Sure, I was unusually forgetful at times, and was occasionally called out for my disheveled on-screen appearance, with days worth of stubble on my face. But, I was also only sleeping three hours a day, writing all the shows and booking every guest. A little forgetfulness and fatigue seemed understandable.
By the fourth year after my diagnosis, my symptoms had become progressively more noticeable. And now they were newly accompanied by a debilitating depression. Depression and dementia, by the way, were never mentioned by the doctors I saw when they listed symptoms I could expect from my growing tumour.
It was not long before my dementia turned into full-blown anterograde amnesia, characterised by what seemed, outwardly, to be an inability to form new memories. This put me in a perpetual state of forgetfulness that was undoubtedly the most debilitating of all my symptoms. I could no longer read; I kept getting lost in the words. I could not follow paragraph structure. Writing was frustrating and impossible. Words became unglued from their meanings. Concepts became less concrete. I was pretty sure, for example, that a giraffe was an animal with a long neck, but what was an animal? I couldn’t be sure.
Technology became a big mystery. I went several months without being able to use Skype. The excuse I gave to people was that Skype was “broken.” Not my computer – just Skype. In truth, I was using the wrong password, though I didn’t realise it then. I was incapable of diagnosing the problem, let alone fixing it.
Simple, everyday occurrences like recovering a password, or just keeping my shoelaces tied, tired me out. I addressed my fatigue with frequent naps during the day. My concept of spatial relations was also affected. Was Boston above or below New York? I couldn’t be sure. My ability to traverse the physical world weakened. I would be on a train, in a cab, or even on a plane and forget where I was going. I would show up to appointments on the wrong day, or just not show up at all. Trying to find my locker at the gym was an exercise in trial and error. I couldn’t find the will to exercise, so I don’t even know why I was at the gym. Completing any type of exercise, mental or physical, seemed impossible. I couldn’t accomplish anything. Anything that required planning, forethought or imagination was out of the question. It was totally debilitating. And it went on for months.
It’s really hard to convey how scary all this was for me, and for my girlfriend. We had been together for two years, and lived together in the same apartment. We came from very different backgrounds, but our collective passion for our careers was a big part of what tied us together. That, of course, changed once I became unable to work.
She would wake up and leave for her job, and I would stay home, trapped in a prison of my own limitations. Unable to remember, I was also unable to keep track of time. Minutes passed like seconds, and hours spent alone produced gaps unnoticed by me, that grew like chasms in a slow motion earthquake. She was supportive, but she was also scared. Who wouldn’t be? Neither of us knew what was happening. She had always known me as a strong, willful man, and I had always projected that strength towards her. Now, I was like a child, helpless and lost. I became afraid of everything. Mostly though, I was afraid that she would leave me.
While my girlfriend was away at work, I spent my days watching the news, watching the world go on without me. It started with social media. Since my TV show had ended, people stopped mentioning me. Comments and messages from fans and readers of my blog petered out, with no new articles by me to attract them. Yet, many people sent me messages asking what I was doing. I was doing nothing, but I was too ashamed to tell them that. Meanwhile, my emails to former colleagues in the media began to feel intrusive and pestering. In some cases, my notes were rather demented. I’m pretty sure I managed to give a few editors who thought they wanted to publish my work ulcers. One, in particular, comes to mind. She was exasperated during one of our phone calls, something about missing deadlines and my weak excuse of writer’s block. Who could blame her?
Editors were not the only ones to come away baffled. Just about everyone was finding me unbearable. I was used to charming my way around people, but the dementia put a stop to that. My attempts at humor only led to further awkwardness. Everyday social interactions led to embarrassing miscommunications. Well-intentioned questions came out at inappropriate times. People’s names escaped me. I forgot how I knew them, if I even remembered I knew them at all. I struggled to hold conversations. My friends thought I was on drugs. I developed compulsive behaviors, like chain smoking, using weird aphorisms and platitudes, endlessly negotiating fares with livery-cab drivers while traffic piled up behind them, and, for some reason, a perverse obsession with playing Tetris. I played it for hours upon hours, day after day. The predictability and structure of the game soothed my childlike mind.
I stopped calling people for fear of having just spoken with them. I was often vague, afraid of revealing any lack of knowledge about an event or fact so elemental that it was bound to create a frighteningly awkward pause in the conversation. I began to limit all my communication to text and email, where I at least had the option of reviewing my most recent conversations for context. I began every sentence with “Did I tell you about…?” or “Remind me, again…” I attached my keys to my belt so that I would not lose them. These were all coping mechanisms meant to shield me and others from the truth of my condition.
All this time, I knew something was terribly wrong. I did not know how or why, but I knew I was losing touch with the world; this was not lost on me. And so, I began to withdraw.
By the time my friends and family realized the severity of my condition and forced me to seek medical care, I had been living this way for months. My world had become a wasteland of hopelessness and fear. My meetings with the most prestigious surgeons in New York only confirmed the diagnoses and suggested treatments I received four years earlier.
The best-case scenarios presented to me by doctors at these well-regarded academic hospitals in Manhattan carried with them the same slew of “side effects” that were as unacceptable to me now as they were back then. he most horrific of the two standard options available involved sawing off the top of my head, lifting my brain out with forceps, and dissecting my tumour while hopefully avoiding damage to my optic nerve and hypothalamus. My pituitary would still need to be “sacrificed,” but the doctors seemed to think that replacing the beautiful symphony of hormonal function coordinated by my brain with a synthetic orchestra of daily injections was a small price to pay. Their procedures seemed barbaric, and their disregard for my beautiful life felt just as cruel. In the end, everything came back down to those same numbers – 30%, 40%, 100%. They rang in my ears like death knells. They rang so loudly that I almost didn’t hear the words of one doctor, a neurosurgeon working at Weill Cornell Medical College and Memorial Sloan Kettering, who promised me a scenario with only one outcome: a cure.
Death
I met Dr. Jeffrey Greenfield on a sunny Tuesday morning, in a small examination room at Memorial Sloan Kettering’s pediatric day hospital. It was June 4, 2013, exactly two weeks since my sobering consultations with other New York neurosurgeons. Their prognoses, though not shocking, were nonetheless unacceptable. My father, also a doctor, would spend the intervening days sorting through thousands of available studies dealing with pediatric tumours, determined to find someone, somewhere, who could offer us something better, something whose side-effects I could live with.
Out of the hundreds of studies dealing with craniopharyngiomas, only 22 were published after my 2009 diagnosis. Some of these studies offered alternative treatments that we had not heard of before. A study out of Brazil used interferons (signaling proteins meant to attack tumour cells) and chemotherapeutic agents to shrink craniopharyngiomas, both with mixed results. Japanese researchers deployed CyberKnife radiation in order to shrink the tumours, though long-term outcomes were less than certain.
In the end, it was a combination of luck and persistence that was responsible for my introduction to Greenfield. An offhand recommendation from a pediatric oncologist at the Dana Farber Institute at Harvard University led my father through a series of introductions that culminated in my appointment with Greenfield on Manhattan’s Upper East Side.
“Mr. Kofinas?” There it was. My father and I both stood up. “Follow me please,” an orderly said. We were taken to a small examination room and told that we would see the doctor shortly. My vitals were taken, and I was asked the same, basic questions, to which I gave the same, perfunctory answers: “Have you been experiencing headaches?”
“No.”
“Have you had any problem with your balance?”
“No.”
“Have you experienced any loss of vision?”
“No.”
No one ever asked me about my memory. I was relieved when the questioning was over.
It wasn’t long before the door to my examination room opened again, but this time, the visitor was a gray-haired doctor who looked to be in his early forties, forty-five at most. “Hello, I’m Dr. Greenfield. You must be Demetri.” I shook his hand. “Could you tell me a little bit about your symptoms?”
I told him that I wasn’t sure if they were “symptoms,” but that I had been a little depressed and forgetful. My father interjected, adding more details where I was reluctant or unable to do so.
Greenfield listened as my father explained my concerns about the side effects of surgery and the risks we had been presented with up until that point. Greenfield then turned to me again and asked me more directly to articulate my concerns. I explained how I had chosen to live with this tumour for the past four years, specifically because the risks of surgery were so unacceptable to me. He listened until I was finished. Then he said, “For a disease like a craniopharyngioma that has lots of treatment options, the outcomes, which are tied to the surgery, can be life altering. These types of tumours are located in such a sensitive epicenter of the brain that we have gained an appreciation for the less is more philosophy in dealing with them. Hearing your concerns, I feel the best option for you is a minimally invasive surgery.”
What did that even mean? I was hesitant to ask, but as usual, my father was not. “You mean endonasal?” he said.
“No,” Dr. Greenfield said. “In your son’s case, my recommendation would be an intracranial approach.”
I don’t remember exactly how Greenfield described the surgery to me at the time – and he and my father have helped me reconstruct our conversation as you read it today. But our subsequent discussions have made the details of the procedure difficult to forget. His proposal involved drilling a hole, roughly half the size of a dime, in the top of my skull, from which the entire surgery would be conducted. A catheter would be inserted, followed by an endoscope, all passed through two and a half inches of my brain, straight into the cystic, fluid filled portion of my craniopharyngioma, which had grown so large it was protruding from my brain’s third ventricle. This sounded horrifying at the time. It still does.
“What are the side effects?” I asked, nervously.
“We don’t have any complications with this procedure,” he said. “Some bleeding is possible, and you may get an infection on the skin that we would treat with antibiotics; I’ve never had that.” I didn’t understand what he was suggesting.
My father followed up, “Now, what do you mean there are no complications? What about his hormones? Is there any risk to the hypothalamic-pituitary axis?”
“No,” responded Greenfield.
“What about his hypothalamus? Is there any risk to the optic nerve?” my father asked.
“We map out our route on the computer using neural navigation software,” Greenfield began, “and we figure an entry point and an exit point, making sure that we are not going to hit any major blood vessels or critical regions of the brain along the way. Once the procedure is underway, we use real-time MRI in order to follow the catheter, which we insert first in order to clear the path of entry for the endoscope. The cystic component of the craniopharyngioma appears to be applying pressure up into the hypothalamic and cognitive centers of your brain, Demetri. We can use suction through the endoscope to puncture and drain the cyst.”
He turned to look at my father, then looked back at me and said, humbly, “I feel confident that I can alleviate your symptoms without any side-effects.” I must have looked baffled, because I proceeded to repeat my question about side effects a few more times.
Despite Greenfield’s confidence that he could cure me without causing any further damage, I remained unconvinced. And I remained a mess. The dementia continued to take its toll. I was no longer just forgetful, unfocused, and depressed; I was living moment to moment with no grounding in the past, no understanding of the future, and no temporal awareness whatsoever.
By the time we left Memorial Sloan Kettering, I had already forgotten most of what Greenfield had told me. Instead, I clung, again, to those old numbers: 30%, 40%, 100%. They remained seared in my mind from 2009, displacing all new information. The depression played its usual role, prejudicing bad news in place of good. The risk that the tumour had already invaded the hypothalamic walls of my brain was one of the few things I managed to retain from this otherwise hopeful introduction. I also think that it was hard for me to be hopeful, because I was so scared of having my heart broken. I loved my life. I didn’t want to let it go.
Lauren, my girlfriend of two years, emailed me later that morning, asking how my appointment went. I responded, “really well.”
That’s it. My subsequent 21 emails to her in the span of four hours were a compilation of confusion and nonsense. I tried to meet her at work but got lost looking for her office. I returned home, alone, only to find that I had lost my keys. We eventually met up later that afternoon. She had gotten a couple of baseball tickets from a friend. The Yankees were playing the Cleveland Indians. Neither of us particularly cared. We left in the seventh inning. She had work early and I had had a long day. We were a young couple for whom life had become very old.
Over the next few days, a process of acceptance started taking hold. I was given a date for my operation: June 17, 2013, just 13 days after my meeting with Greenfield. I remember wishing that it could be sooner. I was afraid, but I also wanted it to be over with. Some of my emails to friends and family during this wait conveyed confusion, some conveyed hope, and others, despair. I was dealing with what felt like an impossible situation.
Three days before my surgery, in the early morning hours, before daybreak, I awoke from a dream. I described it to a friend in an email shortly afterward. “My fear was gone,” I said to him, “and I felt life flooding through my veins for the first time in so long. I had forgotten what it was like to have a future, and tonight, I felt normal again, and God, if it was not the sweetest feeling in so, so long.” Though I no longer remember the substance of that dream, I remember the feeling very well. It was grace. It was grace that came over me, and it carried me through that weekend, and into the Monday morning of surgery.
I remember everything from that day. I had given up trying to sleep, and made a call around five o’clock in the morning to one of my cousins in Greece who had comforted me with words of encouragement and love in the weeks prior. I told him I was scared, and I think he was too, but he did his best not to show it. I told him I loved him, and then we hung up. I came back to bed. Lauren had been sleeping. I gently woke her, and we began to gather our things. The surgery was scheduled to take place at Weill Cornell, and at six in the morning, it was a short cab ride to the hospital. We met my parents in the lobby of the Greenberg Pavilion, where my sister arrived shortly thereafter. She was sick with a cold, and it was advised that she not stay long. She gave me a card that I opened after she left. Reading it still makes me cry.
The grace that visited me in that early morning dream remained with me during the final hours before my surgery. My heart was open. I was afraid, but I was not regretful. I had done the most with the time I was given, and I intended to spend what time I had left sharing my love with my family, and with Lauren. My concern for her only grew as the time of surgery approached. I wanted to know that she would be ok. She was the most beautiful thing that life had gifted me, and all I wanted was to keep her safe.
“Mr. Kofinas, surgery is ready for you now.” There it was. I was wheeled down on a gurney, put through one last MRI, and fixed with the brain markers needed for guiding the catheter. Everyone watched, as I lay silently. I was trying to understand where it all went wrong. What it was all for, what it all meant, if my life had meant anything at all. Maybe I still held onto the hope that I could reason my way to God. I didn’t want to die. Death felt like the loss of everything, and this felt like death.
The last memory I have is of shivering and needing to urinate. I felt a connection to death, and it was utterly terrifying. It was somewhere amid this intensity that I was put under anesthesia.
Rebirth
My first memory post-surgery was of being positioned in my room by nurses in the intensive-care unit, where my family and a few close friends waited to greet me. I could feel pain in the top of my head. This turned out to be the first evidence of the procedure’s success. Had the surgery failed, I would not have been able to draw a connection between the events leading up to the operation and my awakening in the ICU.
With the others gathered around, my father shared the good news. He explained what Greenfield had conveyed to him – that the surgery had completely collapsed the cyst, which fell away like a deflated balloon from the hypothalamic walls, exposing inflammation, and an immediate pulsation of new blood rushing into the healthy tissue in my brain.
“Wow,” I said. “He actually saw the hypothalamus pulsating?” My father stared silently at me for a moment, and then his eyes began to fill with tears. He hadn’t seen that kind of understanding in me for a long time. I was able to reason. I understood what the pulsation meant, and more importantly, I understood what it could mean.
Deductive and inductive reasoning are skills we use constantly in our daily lives in order to make sense of our world. They enable us to act successfully on our surroundings. These are basic, evolutionary processes that we all take for granted. Without them, we cannot function in society. I had lost them. Now I had them back.
It turns out Greenfield’s operation was beyond successful. My tumour had been reduced to a fraction of its original size, making it an easy target for a proposed six-week, daily bout of targeted radiation. There was now hope for not just a cure, but a permanent cure.
The two nights in the hospital following my surgery were the most difficult. This wasn’t an objectively measurable recovery process. I wasn’t regaining the use of a limb or some other vital function. I was regaining the use of my mind. The experience was both awesome and terrifying. I felt like the subject of some minor wager between Olympian gods bored with immortality. Besides regaining lucidity, I also regained my missing memories. All of them.
The doctors, I might have hoped, would have mentioned this possibility, but it seems the research on this type of tumour and its effect on memory and cognition is scant. This is probably because my craniopharyngioma was rather unique in the way it grew: up into my hypothalamus and cognitive centers, and away from the pituitary gland. This growth pattern – and waiting four years for it to develop – is the lucky break that made my surgery possible, but it was also why I had such huge memory deficits.
My assumption was that since I couldn’t remember anything during my amnesia, the memories had never formed to begin with. This was utterly false. Instead, everything that happened to me from the onset of my symptoms was sitting in my repaired brain, waiting. The files had been created and saved; it was only that the reader had been offline.
There was so much past to go through, and for the most part, I didn’t feel in control of the discoveries. Instead, memories felt more like revelations. They began to pour onto the neural highways of my brain like a torrential summer rain. I couldn’t stop them. Their onslaught was merciless. Evenings were the most intense, as the steroids that reduced my cranial swelling kept me wide awake. With little else to preoccupy my mind, my flashbacks were largely uninterrupted. A retrieval and indexing process began to occur spontaneously, from the moment I left the operating room. I experienced memories as moving pictures, or flashes of light, illuminating a football stadium’s worth of information all at once.
I learned, for example, that for months before my surgery, I had been working with real estate agents in search of a new apartment. On one occasion, I was shown two different apartments in the same building–300 East 23rd Street–and needed to go back and forth between them because I kept forgetting what I had just seen. Understandably, brokers stopped returning my phone calls. In another recollection, I learned that my grandfather had died in early January, a full six months before my surgery. In an email to my sister, written on my iPhone at one in the morning, two weeks after surgery, I said the following:
In the course of normal, waking life, there is a natural process of mnemonic storage and retrieval that takes place. It happens effortlessly. It’s like breathing. The process builds and reinforces a timeline for the entirety of our life. The mind sorts things in a linear way. A comes before B; B comes before C, etc.
But what happens if you experience B before A? In the days and weeks after my surgery, this is what was happening to me. A memory would announce itself, in an almost mystical resurrection of forgotten history. The announcement would instantly capture my conscious attention, leading to further, more active retrievals, until all the surrounding memories most closely associated with that image or thought were exhausted.
More often than not, the adjacent memories bore no temporal proximity to one another. This suggests to me that there is some kind of metadata associated with each memory. I was now relying on this information to create a chronological order. This went on for days, weeks, and in some rare instances, even months after my surgery.
Making these rapid-fire discoveries of a lost past was exciting, but it was also frightening. Remembering became a type of freak-show journey through a wasteland of aberrant experience over which I had no control. There were instances where I felt a separation between mental consciousness and conscious experience. I was observing myself from a place that sat outside my own mind. It felt like a waking meditation.
At times, this separation created a sense of detachment from self that felt especially bizarre when exploring the unfolding past. The person whose memories were made using my body did not feel like me. I felt immense personal shame with each new revelation. I felt like I was watching an actor forgetting his lines on stage and sharing in the audience’s sense of embarrassment and pity. The closest analogy I can think of is that of an addict going through recovery, as he remembers all the ways in which he misrepresented himself during the worst periods of his addiction.
In the weeks and months that followed, I would reach out to some of the people who I had interacted with during my illness in order to let them know what had happened, apologizing for what I felt was a personal misrepresentation. For the most part though, I’ve had to live with the knowledge that this distorted picture of me will exist in minds beyond my reach.
Of course, those who mattered most were my friends and family, and they didn’t need any apologies. Lauren and I managed to have the most fun with it all. My wit, which had disappeared along with so much else, returned. With it, came my ability to make her laugh again, something that we had both sorely missed. We poked fun at one another all day. I remained sensitive to sharing my story with strangers, but she wanted the world to know what I had been through. She was proud of me, and she felt that I needed to be equally proud of myself for the courage and determination I had shown.
Surgery had as much of a restorative, almost instantaneous effect on my powers of critical thinking and problem solving as it had on my memory. Conceptual thinking and the structures of language also regained their usefulness. People were reconnected to their appropriate name. No longer did I say the name Denzel Washington when I meant Barack Obama. Maps, likewise, stopped appearing abstract; Boston found its rightful place above New York. My sense of orientation returned, and I could walk or drive anywhere without the fear of becoming lost.
Though most of my mental abilities returned quickly, some took longer to re-materialize. Multitasking and being able to maintain and balance multiple conversations at once did not return until I was forced to relearn the skill in large, communal settings – essentially, in work environments. For the first six months or so, after my surgery, I preferred one-on-one interactions. Noisy dinner parties and hectic sidewalks were overwhelming. I spent the rest of the summer in a place of intense focus and awareness. It was a time of great personal awakening, and it was, for an agnostic, a very religious experience.
Every book I read and every film I watched during this time was overflowing with meaning. Everything was a source of inspiration. There were certain films in particular that resonated more than others. The Matrix trilogies, Gattaca, Terrence Malick’s The Thin Red Line. The words in the Goo Goo Dolls song Iris would turn me into a sobbing mess. I was living in what felt like the afterglow of an explosion of consciousness. It was like being in a deeply meditative state that required no effort to maintain. I wasn’t doing anything particularly new or different; it’s just that my experience of the old was utterly new.
When trying to convey to others my feelings of joy and excitement, I would ask them to remember what a summer day felt like when they were children. “Do you remember how big the day felt? You had anentire day ahead of you.” The appreciation for life, coupled with my reacquired clarity and focus, made the days feel just as long and adventurous. By the time night would come, I’d feel like I had traveled the world, and that a new adventure was just around the corner, with the rise of another new day. There was meaning and beauty behind everything, and I was filled with gratitude for the privilege of being present to experience it, all of it.
The summer that followed my surgery was the greatest summer of my life. I tore through books, re-watched old films, and wrote in great detail about my thoughts and feelings. I felt reborn, resurrected, and reanimated with life in a way that I think will always be unique to that time. In fact, I don’t know if my mind could have born that level of intensity for any longer. The obligations of daily life enforce a certain banality onto existence that is inescapable. Introducing love and purpose into our lives improves their quality; my existence during that summer was full of love and purpose.
As much as I may have wished for an endless summer, it was not possible. The surgery was a cure, but not a permanent one. The tumour remained alive and well, and though the cyst had been drained, it was bound to refill again. Once I was well enough, I began radiation. The prospect that I could finally be freed from this tumour’s presence in my life outweighed the more frightening risks of the treatment.
I thought my daily 7 am commutes to Memorial Sloan Kettering’s radiation oncology unit would be a sad and miserable experience. In fact, those treatments were the greatest honor of my life. I’ve never known so much beauty and grace. I saw a young father trying desperately to display strength and determination before his cancer-stricken son; a middle-aged Japanese man tending gently to his wife’s swollen and tired feet; an elderly woman crying as she tried to make sense of her own tragedy amidst the carnage of dying children.
The radiation did have its tradeoffs. I went several months without any hair on the sides of my head. (Fortunately, I have hipsters to thank for making that side effect look trendy.) There was also the prolonged period of unemployment that resulted from these additional months of treatment, the exhausting daily routine of the hospital, the blood-work, the MRIs, etc. But in the end, it was all worth it. My most recent MRI looked so good that the doctors won’t need to see my face for another year, at least.
For a while, I had lost interest in anything that didn’t deal directly with the arts. Matters of the heart were most vital to me, and my time was precious. I wanted my work to reflect the new person I had become. I found interesting opportunities for work in the nonprofit sector, the most rewarding of which was producing a conference on death and consciousness. Around the same time, I had the good fortune of working with another great group of people to produce my first off-Broadway play. I’ve since started a new production company. We are putting on our next play in November, at the Soho Playhouse.
I am starting to recognize my life again, though I’m still overcoming the trauma of my rebirth. This has taken me time, but with time has come wisdom. Lauren and I remained together for the next year, but eventually, our lives diverged; we separated. It was difficult for me to believe that we could want different things after having endured so much together, but I think my experience changed both of us in profound ways. Facing death and the loss of everyone that I have ever loved has deepened my appreciation for the relationships in my life. In some cases, these relationships grew stronger. In others, they fell away.
I feel so grateful for the life that I’ve been given and the choices I was compelled to make. I learned how fleeting life can be. I learned how to have faith. And most of all, I learned that love is truth. For all my intellectual insights, it was through my heart that I experienced what matters most. It’s love.
This story was originally published on qz.com.
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It had been with me from the day I was born. Tumours like mine develop in utero. They are usually discovered in children, but no one could tell me why mine had only been found once I was an adult. It wasn’t cancerous. Perhaps this tumour at the base of my brain, near the pituitary gland, had reached maturity long ago and would never grow further. That would mean I had nothing to worry about. Or, maybe it had just woken up, and was growing for the first time. In three months, I could be blind. There was no way to know.
Certainty only came with surgery, whose outcomes were presented to me in the form of averages and standard deviations. Thirty percent risk of blindness. Forty percent risk of morbid obesity caused by hypothalamic damage. One hundred percent risk of complete pituitary loss, and hormone replacement therapy for life. And the risk of doing nothing? Undefined.
Assessing my type of tumour – which is known as a craniopharyngioma – the surgeons each gave me their different best guesses as to what the risk of inaction was. Those guesses varied wildly. There was no way I could rely on their predictions to make a decision.
What eventually did happen was something none of the experts ever suggested would be possible. Over time I would lose my memory – almost completely – of things that happened just moments before, and become unable to recall events that happened days and years earlier. To the rest of the world, I would become a young man behaving bizarrely, perhaps drunkenly, and I lacked the ability to acknowledge it, or fully explain what was going on. As it grew, eventually to the size of a small egg, the tumour dug a hole in my consciousness, of ever-increasing depth. I became incapable of living the life I had made for myself.
I’ve now been given my health back. Through persistence, luck, and maybe something more, an incredible medical procedure returned my mind and memories to me almost all at once. I became the man who remembered events I had never experienced, due to my amnesia. The man who forgot which member of his family had died while he was sick, only to have that memory, like hundreds of others, come flooding back. The memories came back out of order, with flashbacks mystically presenting themselves in ways that left me both excited and frightened.With my health back, I was able to live a life again, but it’s not the same life as it was before. The tumour changed me forever. And I am grateful for it.
Following my diagnosis in 2009, I lived the next few months of my life in panic and disillusionment, trying desperately to cultivate an outward perception of normalcy. But inside, I was a mess. I constantly worried about my eyesight, conducting comically unscientific checks of my peripheral vision whenever no one was looking. I spent time between meetings at work crying softly in my cubicle. On my most difficult days, I hid in the bathroom, where I could fully dissolve into tears. I spent evenings trying desperately to sleep, for escape, only to be visited by grotesque dreams of death and morbidity. When my anxiety became unbearable, I would feel the impulsive need to take long walks, but this didn’t help, either. The only thing that seemed to provide a temporary relief from suffering was physical exercise, which I would engage in to the point of total exhaustion. I spent the rest of my time alone and afraid. I had become paralyzed by fear. It was all so surreal. I was completely unprepared. This felt like a death sentence.
Looking back at my journal entries from this time, I am struck by how little I wrote about my tumour. Instead, almost all of my writing dealt with my anxieties about life. I was afraid that disability would strike me before I had a chance to make my mark on the world. I was afraid that I would never fall in love, that I would never have time to make a family. I was less afraid of what my tumour could do to me than I was of what I would fail to do because of it.
All the same, I threw myself into my work. I left my job in technology, turning my economics blog into a full-time profession. The blog became a radio program, which I in turn developed into a television news show called Capital Account, broadcast on the RT network.
I once considered those four years after my tumour’s discovery the best and most intense of my life. I thought I had overcome my fears, but really, I had just ignored them. As much as I would have wished it, my urgency for living life did not change the facts of my diagnosis.
For years, I didn’t seem to have any symptoms at all. Sure, I was unusually forgetful at times, and was occasionally called out for my disheveled on-screen appearance, with days worth of stubble on my face. But, I was also only sleeping three hours a day, writing all the shows and booking every guest. A little forgetfulness and fatigue seemed understandable.
By the fourth year after my diagnosis, my symptoms had become progressively more noticeable. And now they were newly accompanied by a debilitating depression. Depression and dementia, by the way, were never mentioned by the doctors I saw when they listed symptoms I could expect from my growing tumour.
It was not long before my dementia turned into full-blown anterograde amnesia, characterised by what seemed, outwardly, to be an inability to form new memories. This put me in a perpetual state of forgetfulness that was undoubtedly the most debilitating of all my symptoms. I could no longer read; I kept getting lost in the words. I could not follow paragraph structure. Writing was frustrating and impossible. Words became unglued from their meanings. Concepts became less concrete. I was pretty sure, for example, that a giraffe was an animal with a long neck, but what was an animal? I couldn’t be sure.
Technology became a big mystery. I went several months without being able to use Skype. The excuse I gave to people was that Skype was “broken.” Not my computer – just Skype. In truth, I was using the wrong password, though I didn’t realise it then. I was incapable of diagnosing the problem, let alone fixing it.
Simple, everyday occurrences like recovering a password, or just keeping my shoelaces tied, tired me out. I addressed my fatigue with frequent naps during the day. My concept of spatial relations was also affected. Was Boston above or below New York? I couldn’t be sure. My ability to traverse the physical world weakened. I would be on a train, in a cab, or even on a plane and forget where I was going. I would show up to appointments on the wrong day, or just not show up at all. Trying to find my locker at the gym was an exercise in trial and error. I couldn’t find the will to exercise, so I don’t even know why I was at the gym. Completing any type of exercise, mental or physical, seemed impossible. I couldn’t accomplish anything. Anything that required planning, forethought or imagination was out of the question. It was totally debilitating. And it went on for months.
It’s really hard to convey how scary all this was for me, and for my girlfriend. We had been together for two years, and lived together in the same apartment. We came from very different backgrounds, but our collective passion for our careers was a big part of what tied us together. That, of course, changed once I became unable to work.
She would wake up and leave for her job, and I would stay home, trapped in a prison of my own limitations. Unable to remember, I was also unable to keep track of time. Minutes passed like seconds, and hours spent alone produced gaps unnoticed by me, that grew like chasms in a slow motion earthquake. She was supportive, but she was also scared. Who wouldn’t be? Neither of us knew what was happening. She had always known me as a strong, willful man, and I had always projected that strength towards her. Now, I was like a child, helpless and lost. I became afraid of everything. Mostly though, I was afraid that she would leave me.
While my girlfriend was away at work, I spent my days watching the news, watching the world go on without me. It started with social media. Since my TV show had ended, people stopped mentioning me. Comments and messages from fans and readers of my blog petered out, with no new articles by me to attract them. Yet, many people sent me messages asking what I was doing. I was doing nothing, but I was too ashamed to tell them that. Meanwhile, my emails to former colleagues in the media began to feel intrusive and pestering. In some cases, my notes were rather demented. I’m pretty sure I managed to give a few editors who thought they wanted to publish my work ulcers. One, in particular, comes to mind. She was exasperated during one of our phone calls, something about missing deadlines and my weak excuse of writer’s block. Who could blame her?
Editors were not the only ones to come away baffled. Just about everyone was finding me unbearable. I was used to charming my way around people, but the dementia put a stop to that. My attempts at humor only led to further awkwardness. Everyday social interactions led to embarrassing miscommunications. Well-intentioned questions came out at inappropriate times. People’s names escaped me. I forgot how I knew them, if I even remembered I knew them at all. I struggled to hold conversations. My friends thought I was on drugs. I developed compulsive behaviors, like chain smoking, using weird aphorisms and platitudes, endlessly negotiating fares with livery-cab drivers while traffic piled up behind them, and, for some reason, a perverse obsession with playing Tetris. I played it for hours upon hours, day after day. The predictability and structure of the game soothed my childlike mind.
I stopped calling people for fear of having just spoken with them. I was often vague, afraid of revealing any lack of knowledge about an event or fact so elemental that it was bound to create a frighteningly awkward pause in the conversation. I began to limit all my communication to text and email, where I at least had the option of reviewing my most recent conversations for context. I began every sentence with “Did I tell you about…?” or “Remind me, again…” I attached my keys to my belt so that I would not lose them. These were all coping mechanisms meant to shield me and others from the truth of my condition.
All this time, I knew something was terribly wrong. I did not know how or why, but I knew I was losing touch with the world; this was not lost on me. And so, I began to withdraw.
By the time my friends and family realized the severity of my condition and forced me to seek medical care, I had been living this way for months. My world had become a wasteland of hopelessness and fear. My meetings with the most prestigious surgeons in New York only confirmed the diagnoses and suggested treatments I received four years earlier.
The best-case scenarios presented to me by doctors at these well-regarded academic hospitals in Manhattan carried with them the same slew of “side effects” that were as unacceptable to me now as they were back then. he most horrific of the two standard options available involved sawing off the top of my head, lifting my brain out with forceps, and dissecting my tumour while hopefully avoiding damage to my optic nerve and hypothalamus. My pituitary would still need to be “sacrificed,” but the doctors seemed to think that replacing the beautiful symphony of hormonal function coordinated by my brain with a synthetic orchestra of daily injections was a small price to pay. Their procedures seemed barbaric, and their disregard for my beautiful life felt just as cruel. In the end, everything came back down to those same numbers – 30%, 40%, 100%. They rang in my ears like death knells. They rang so loudly that I almost didn’t hear the words of one doctor, a neurosurgeon working at Weill Cornell Medical College and Memorial Sloan Kettering, who promised me a scenario with only one outcome: a cure.
Death
I met Dr. Jeffrey Greenfield on a sunny Tuesday morning, in a small examination room at Memorial Sloan Kettering’s pediatric day hospital. It was June 4, 2013, exactly two weeks since my sobering consultations with other New York neurosurgeons. Their prognoses, though not shocking, were nonetheless unacceptable. My father, also a doctor, would spend the intervening days sorting through thousands of available studies dealing with pediatric tumours, determined to find someone, somewhere, who could offer us something better, something whose side-effects I could live with.
Out of the hundreds of studies dealing with craniopharyngiomas, only 22 were published after my 2009 diagnosis. Some of these studies offered alternative treatments that we had not heard of before. A study out of Brazil used interferons (signaling proteins meant to attack tumour cells) and chemotherapeutic agents to shrink craniopharyngiomas, both with mixed results. Japanese researchers deployed CyberKnife radiation in order to shrink the tumours, though long-term outcomes were less than certain.
In the end, it was a combination of luck and persistence that was responsible for my introduction to Greenfield. An offhand recommendation from a pediatric oncologist at the Dana Farber Institute at Harvard University led my father through a series of introductions that culminated in my appointment with Greenfield on Manhattan’s Upper East Side.
“Mr. Kofinas?” There it was. My father and I both stood up. “Follow me please,” an orderly said. We were taken to a small examination room and told that we would see the doctor shortly. My vitals were taken, and I was asked the same, basic questions, to which I gave the same, perfunctory answers: “Have you been experiencing headaches?”
“No.”
“Have you had any problem with your balance?”
“No.”
“Have you experienced any loss of vision?”
“No.”
No one ever asked me about my memory. I was relieved when the questioning was over.
It wasn’t long before the door to my examination room opened again, but this time, the visitor was a gray-haired doctor who looked to be in his early forties, forty-five at most. “Hello, I’m Dr. Greenfield. You must be Demetri.” I shook his hand. “Could you tell me a little bit about your symptoms?”
I told him that I wasn’t sure if they were “symptoms,” but that I had been a little depressed and forgetful. My father interjected, adding more details where I was reluctant or unable to do so.
Greenfield listened as my father explained my concerns about the side effects of surgery and the risks we had been presented with up until that point. Greenfield then turned to me again and asked me more directly to articulate my concerns. I explained how I had chosen to live with this tumour for the past four years, specifically because the risks of surgery were so unacceptable to me. He listened until I was finished. Then he said, “For a disease like a craniopharyngioma that has lots of treatment options, the outcomes, which are tied to the surgery, can be life altering. These types of tumours are located in such a sensitive epicenter of the brain that we have gained an appreciation for the less is more philosophy in dealing with them. Hearing your concerns, I feel the best option for you is a minimally invasive surgery.”
What did that even mean? I was hesitant to ask, but as usual, my father was not. “You mean endonasal?” he said.
“No,” Dr. Greenfield said. “In your son’s case, my recommendation would be an intracranial approach.”
I don’t remember exactly how Greenfield described the surgery to me at the time – and he and my father have helped me reconstruct our conversation as you read it today. But our subsequent discussions have made the details of the procedure difficult to forget. His proposal involved drilling a hole, roughly half the size of a dime, in the top of my skull, from which the entire surgery would be conducted. A catheter would be inserted, followed by an endoscope, all passed through two and a half inches of my brain, straight into the cystic, fluid filled portion of my craniopharyngioma, which had grown so large it was protruding from my brain’s third ventricle. This sounded horrifying at the time. It still does.
“What are the side effects?” I asked, nervously.
“We don’t have any complications with this procedure,” he said. “Some bleeding is possible, and you may get an infection on the skin that we would treat with antibiotics; I’ve never had that.” I didn’t understand what he was suggesting.
My father followed up, “Now, what do you mean there are no complications? What about his hormones? Is there any risk to the hypothalamic-pituitary axis?”
“No,” responded Greenfield.
“What about his hypothalamus? Is there any risk to the optic nerve?” my father asked.
“We map out our route on the computer using neural navigation software,” Greenfield began, “and we figure an entry point and an exit point, making sure that we are not going to hit any major blood vessels or critical regions of the brain along the way. Once the procedure is underway, we use real-time MRI in order to follow the catheter, which we insert first in order to clear the path of entry for the endoscope. The cystic component of the craniopharyngioma appears to be applying pressure up into the hypothalamic and cognitive centers of your brain, Demetri. We can use suction through the endoscope to puncture and drain the cyst.”
He turned to look at my father, then looked back at me and said, humbly, “I feel confident that I can alleviate your symptoms without any side-effects.” I must have looked baffled, because I proceeded to repeat my question about side effects a few more times.
Despite Greenfield’s confidence that he could cure me without causing any further damage, I remained unconvinced. And I remained a mess. The dementia continued to take its toll. I was no longer just forgetful, unfocused, and depressed; I was living moment to moment with no grounding in the past, no understanding of the future, and no temporal awareness whatsoever.
By the time we left Memorial Sloan Kettering, I had already forgotten most of what Greenfield had told me. Instead, I clung, again, to those old numbers: 30%, 40%, 100%. They remained seared in my mind from 2009, displacing all new information. The depression played its usual role, prejudicing bad news in place of good. The risk that the tumour had already invaded the hypothalamic walls of my brain was one of the few things I managed to retain from this otherwise hopeful introduction. I also think that it was hard for me to be hopeful, because I was so scared of having my heart broken. I loved my life. I didn’t want to let it go.
Lauren, my girlfriend of two years, emailed me later that morning, asking how my appointment went. I responded, “really well.”
That’s it. My subsequent 21 emails to her in the span of four hours were a compilation of confusion and nonsense. I tried to meet her at work but got lost looking for her office. I returned home, alone, only to find that I had lost my keys. We eventually met up later that afternoon. She had gotten a couple of baseball tickets from a friend. The Yankees were playing the Cleveland Indians. Neither of us particularly cared. We left in the seventh inning. She had work early and I had had a long day. We were a young couple for whom life had become very old.
Over the next few days, a process of acceptance started taking hold. I was given a date for my operation: June 17, 2013, just 13 days after my meeting with Greenfield. I remember wishing that it could be sooner. I was afraid, but I also wanted it to be over with. Some of my emails to friends and family during this wait conveyed confusion, some conveyed hope, and others, despair. I was dealing with what felt like an impossible situation.
Three days before my surgery, in the early morning hours, before daybreak, I awoke from a dream. I described it to a friend in an email shortly afterward. “My fear was gone,” I said to him, “and I felt life flooding through my veins for the first time in so long. I had forgotten what it was like to have a future, and tonight, I felt normal again, and God, if it was not the sweetest feeling in so, so long.” Though I no longer remember the substance of that dream, I remember the feeling very well. It was grace. It was grace that came over me, and it carried me through that weekend, and into the Monday morning of surgery.
I remember everything from that day. I had given up trying to sleep, and made a call around five o’clock in the morning to one of my cousins in Greece who had comforted me with words of encouragement and love in the weeks prior. I told him I was scared, and I think he was too, but he did his best not to show it. I told him I loved him, and then we hung up. I came back to bed. Lauren had been sleeping. I gently woke her, and we began to gather our things. The surgery was scheduled to take place at Weill Cornell, and at six in the morning, it was a short cab ride to the hospital. We met my parents in the lobby of the Greenberg Pavilion, where my sister arrived shortly thereafter. She was sick with a cold, and it was advised that she not stay long. She gave me a card that I opened after she left. Reading it still makes me cry.
The grace that visited me in that early morning dream remained with me during the final hours before my surgery. My heart was open. I was afraid, but I was not regretful. I had done the most with the time I was given, and I intended to spend what time I had left sharing my love with my family, and with Lauren. My concern for her only grew as the time of surgery approached. I wanted to know that she would be ok. She was the most beautiful thing that life had gifted me, and all I wanted was to keep her safe.
“Mr. Kofinas, surgery is ready for you now.” There it was. I was wheeled down on a gurney, put through one last MRI, and fixed with the brain markers needed for guiding the catheter. Everyone watched, as I lay silently. I was trying to understand where it all went wrong. What it was all for, what it all meant, if my life had meant anything at all. Maybe I still held onto the hope that I could reason my way to God. I didn’t want to die. Death felt like the loss of everything, and this felt like death.
The last memory I have is of shivering and needing to urinate. I felt a connection to death, and it was utterly terrifying. It was somewhere amid this intensity that I was put under anesthesia.
Rebirth
My first memory post-surgery was of being positioned in my room by nurses in the intensive-care unit, where my family and a few close friends waited to greet me. I could feel pain in the top of my head. This turned out to be the first evidence of the procedure’s success. Had the surgery failed, I would not have been able to draw a connection between the events leading up to the operation and my awakening in the ICU.
With the others gathered around, my father shared the good news. He explained what Greenfield had conveyed to him – that the surgery had completely collapsed the cyst, which fell away like a deflated balloon from the hypothalamic walls, exposing inflammation, and an immediate pulsation of new blood rushing into the healthy tissue in my brain.
“Wow,” I said. “He actually saw the hypothalamus pulsating?” My father stared silently at me for a moment, and then his eyes began to fill with tears. He hadn’t seen that kind of understanding in me for a long time. I was able to reason. I understood what the pulsation meant, and more importantly, I understood what it could mean.
Deductive and inductive reasoning are skills we use constantly in our daily lives in order to make sense of our world. They enable us to act successfully on our surroundings. These are basic, evolutionary processes that we all take for granted. Without them, we cannot function in society. I had lost them. Now I had them back.
It turns out Greenfield’s operation was beyond successful. My tumour had been reduced to a fraction of its original size, making it an easy target for a proposed six-week, daily bout of targeted radiation. There was now hope for not just a cure, but a permanent cure.
The two nights in the hospital following my surgery were the most difficult. This wasn’t an objectively measurable recovery process. I wasn’t regaining the use of a limb or some other vital function. I was regaining the use of my mind. The experience was both awesome and terrifying. I felt like the subject of some minor wager between Olympian gods bored with immortality. Besides regaining lucidity, I also regained my missing memories. All of them.
The doctors, I might have hoped, would have mentioned this possibility, but it seems the research on this type of tumour and its effect on memory and cognition is scant. This is probably because my craniopharyngioma was rather unique in the way it grew: up into my hypothalamus and cognitive centers, and away from the pituitary gland. This growth pattern – and waiting four years for it to develop – is the lucky break that made my surgery possible, but it was also why I had such huge memory deficits.
My assumption was that since I couldn’t remember anything during my amnesia, the memories had never formed to begin with. This was utterly false. Instead, everything that happened to me from the onset of my symptoms was sitting in my repaired brain, waiting. The files had been created and saved; it was only that the reader had been offline.
There was so much past to go through, and for the most part, I didn’t feel in control of the discoveries. Instead, memories felt more like revelations. They began to pour onto the neural highways of my brain like a torrential summer rain. I couldn’t stop them. Their onslaught was merciless. Evenings were the most intense, as the steroids that reduced my cranial swelling kept me wide awake. With little else to preoccupy my mind, my flashbacks were largely uninterrupted. A retrieval and indexing process began to occur spontaneously, from the moment I left the operating room. I experienced memories as moving pictures, or flashes of light, illuminating a football stadium’s worth of information all at once.
I learned, for example, that for months before my surgery, I had been working with real estate agents in search of a new apartment. On one occasion, I was shown two different apartments in the same building–300 East 23rd Street–and needed to go back and forth between them because I kept forgetting what I had just seen. Understandably, brokers stopped returning my phone calls. In another recollection, I learned that my grandfather had died in early January, a full six months before my surgery. In an email to my sister, written on my iPhone at one in the morning, two weeks after surgery, I said the following:
… I thought I was done downloading all my old memories, but every other day/night or so I find that there are still plenty of puzzle pieces missing. I had completely forgotten about papou’s death. I had this feeling like he was no longer alive but I couldn’t be certain, nor was I sure about when he died – as in if it was recently or years ago. This weekend, I remembered that he died in early January, but needed mom to remind me that it was as we were headed up to NYC from DC. I seemed to have thought he died shortly after we got here. Usually, if someone actively jogs my memory like that I remember every last detail, but for some reason this isn’t the case with papou …
… I also remembered your sweet idea to have a dinner the three of us, and that I did something to upset you in the way I made it difficult to plan something. I am sorry that I did such a bad job of communicating my reasoning to you when you really wanted us to be together. I kept his death at a distance in a very immature way. If I remember correctly, Jason then canceled and you and I went to either Strip House or Barbounia just the two of us. The second place was where I took that beautiful pic of you in the purple scarf so I’m pretty sure that was where we went that Monday night instead of the lion. I even remember where we sat at Barbounia …
In the course of normal, waking life, there is a natural process of mnemonic storage and retrieval that takes place. It happens effortlessly. It’s like breathing. The process builds and reinforces a timeline for the entirety of our life. The mind sorts things in a linear way. A comes before B; B comes before C, etc.
But what happens if you experience B before A? In the days and weeks after my surgery, this is what was happening to me. A memory would announce itself, in an almost mystical resurrection of forgotten history. The announcement would instantly capture my conscious attention, leading to further, more active retrievals, until all the surrounding memories most closely associated with that image or thought were exhausted.
More often than not, the adjacent memories bore no temporal proximity to one another. This suggests to me that there is some kind of metadata associated with each memory. I was now relying on this information to create a chronological order. This went on for days, weeks, and in some rare instances, even months after my surgery.
Making these rapid-fire discoveries of a lost past was exciting, but it was also frightening. Remembering became a type of freak-show journey through a wasteland of aberrant experience over which I had no control. There were instances where I felt a separation between mental consciousness and conscious experience. I was observing myself from a place that sat outside my own mind. It felt like a waking meditation.
At times, this separation created a sense of detachment from self that felt especially bizarre when exploring the unfolding past. The person whose memories were made using my body did not feel like me. I felt immense personal shame with each new revelation. I felt like I was watching an actor forgetting his lines on stage and sharing in the audience’s sense of embarrassment and pity. The closest analogy I can think of is that of an addict going through recovery, as he remembers all the ways in which he misrepresented himself during the worst periods of his addiction.
In the weeks and months that followed, I would reach out to some of the people who I had interacted with during my illness in order to let them know what had happened, apologizing for what I felt was a personal misrepresentation. For the most part though, I’ve had to live with the knowledge that this distorted picture of me will exist in minds beyond my reach.
Of course, those who mattered most were my friends and family, and they didn’t need any apologies. Lauren and I managed to have the most fun with it all. My wit, which had disappeared along with so much else, returned. With it, came my ability to make her laugh again, something that we had both sorely missed. We poked fun at one another all day. I remained sensitive to sharing my story with strangers, but she wanted the world to know what I had been through. She was proud of me, and she felt that I needed to be equally proud of myself for the courage and determination I had shown.
Surgery had as much of a restorative, almost instantaneous effect on my powers of critical thinking and problem solving as it had on my memory. Conceptual thinking and the structures of language also regained their usefulness. People were reconnected to their appropriate name. No longer did I say the name Denzel Washington when I meant Barack Obama. Maps, likewise, stopped appearing abstract; Boston found its rightful place above New York. My sense of orientation returned, and I could walk or drive anywhere without the fear of becoming lost.
Though most of my mental abilities returned quickly, some took longer to re-materialize. Multitasking and being able to maintain and balance multiple conversations at once did not return until I was forced to relearn the skill in large, communal settings – essentially, in work environments. For the first six months or so, after my surgery, I preferred one-on-one interactions. Noisy dinner parties and hectic sidewalks were overwhelming. I spent the rest of the summer in a place of intense focus and awareness. It was a time of great personal awakening, and it was, for an agnostic, a very religious experience.
Every book I read and every film I watched during this time was overflowing with meaning. Everything was a source of inspiration. There were certain films in particular that resonated more than others. The Matrix trilogies, Gattaca, Terrence Malick’s The Thin Red Line. The words in the Goo Goo Dolls song Iris would turn me into a sobbing mess. I was living in what felt like the afterglow of an explosion of consciousness. It was like being in a deeply meditative state that required no effort to maintain. I wasn’t doing anything particularly new or different; it’s just that my experience of the old was utterly new.
When trying to convey to others my feelings of joy and excitement, I would ask them to remember what a summer day felt like when they were children. “Do you remember how big the day felt? You had anentire day ahead of you.” The appreciation for life, coupled with my reacquired clarity and focus, made the days feel just as long and adventurous. By the time night would come, I’d feel like I had traveled the world, and that a new adventure was just around the corner, with the rise of another new day. There was meaning and beauty behind everything, and I was filled with gratitude for the privilege of being present to experience it, all of it.
The summer that followed my surgery was the greatest summer of my life. I tore through books, re-watched old films, and wrote in great detail about my thoughts and feelings. I felt reborn, resurrected, and reanimated with life in a way that I think will always be unique to that time. In fact, I don’t know if my mind could have born that level of intensity for any longer. The obligations of daily life enforce a certain banality onto existence that is inescapable. Introducing love and purpose into our lives improves their quality; my existence during that summer was full of love and purpose.
As much as I may have wished for an endless summer, it was not possible. The surgery was a cure, but not a permanent one. The tumour remained alive and well, and though the cyst had been drained, it was bound to refill again. Once I was well enough, I began radiation. The prospect that I could finally be freed from this tumour’s presence in my life outweighed the more frightening risks of the treatment.
In the radiation immobilizer. Courtesy: Demetri Kofinas
I thought my daily 7 am commutes to Memorial Sloan Kettering’s radiation oncology unit would be a sad and miserable experience. In fact, those treatments were the greatest honor of my life. I’ve never known so much beauty and grace. I saw a young father trying desperately to display strength and determination before his cancer-stricken son; a middle-aged Japanese man tending gently to his wife’s swollen and tired feet; an elderly woman crying as she tried to make sense of her own tragedy amidst the carnage of dying children.
The radiation did have its tradeoffs. I went several months without any hair on the sides of my head. (Fortunately, I have hipsters to thank for making that side effect look trendy.) There was also the prolonged period of unemployment that resulted from these additional months of treatment, the exhausting daily routine of the hospital, the blood-work, the MRIs, etc. But in the end, it was all worth it. My most recent MRI looked so good that the doctors won’t need to see my face for another year, at least.
For a while, I had lost interest in anything that didn’t deal directly with the arts. Matters of the heart were most vital to me, and my time was precious. I wanted my work to reflect the new person I had become. I found interesting opportunities for work in the nonprofit sector, the most rewarding of which was producing a conference on death and consciousness. Around the same time, I had the good fortune of working with another great group of people to produce my first off-Broadway play. I’ve since started a new production company. We are putting on our next play in November, at the Soho Playhouse.
I am starting to recognize my life again, though I’m still overcoming the trauma of my rebirth. This has taken me time, but with time has come wisdom. Lauren and I remained together for the next year, but eventually, our lives diverged; we separated. It was difficult for me to believe that we could want different things after having endured so much together, but I think my experience changed both of us in profound ways. Facing death and the loss of everyone that I have ever loved has deepened my appreciation for the relationships in my life. In some cases, these relationships grew stronger. In others, they fell away.
I feel so grateful for the life that I’ve been given and the choices I was compelled to make. I learned how fleeting life can be. I learned how to have faith. And most of all, I learned that love is truth. For all my intellectual insights, it was through my heart that I experienced what matters most. It’s love.
This story was originally published on qz.com.
