Chapter 1

I wanted a life different than others and this I got. I can’t say for sure what I expected, but it surely wasn’t this. What I got was a life hijacked by a disease that turned my body into a stranger. Lost in the fog of my disease — I clung to sanity with my bare fingernails — trying to make sense of a senseless situation. I felt that everything was connected, but now it was all falling apart, imploding into nothingness.

 

Exhausted, with the weight of the world crashing down on me, it was tempting to give in, give up, and drift into darkness. This far out on the edge, the distance between is and was, is razor-thin. I died a hundred times that day like I did the day before, and the day before that. But I kept on waking up to the harsh reality at the ICU. In this labyrinth of forever interconnected series of sterile rooms and corridors; life had somehow managed to find me. Life was there, when I opened my eyes, it was there when my loved ones came to visit but most of all; it was there when my daughter was born.

 

My journey started by exploring the four corners of the earth. But it gradually took a more internal path as I got progressively sicker and sicker. My multiple sclerosis plummeted down a dark spiral as it turned progressive. This set off a series of ever-worsening pneumonia that led to a thirty-day coma, a year of eating through a tube, and using a respirator for three more. A soul-searching investigation led to thorny questions of faith; something larger than me, something to hang my hopes on, something that can explain it all. I have always been interested in Eastern religions but delayed practicing to another day. Now that other day had come and found me, and I found myself wanting.

 

The road I chose was Buddhism, and for all intents and purposes, I am a Buddhist in training. But sometimes I feel as enlightened as an opaque jar that has been wrapped in duct tape, stuffed in a burlap bag, and pitched into a murky lake. Still, this does not stop me from trying to do better. My mind is constantly curious, crowded, and busy, which is not particularly good for meditation. But in keeping with teachings, I am trying to lead with a friendly heart and an open mind. Being open and vulnerable in the moment and in the worst of them has sometimes been painful but often, more often than not; liberating.

 

I have been living with my disease for a long time and I would like to share my experience with you. This book is an attempt to string together various notes and memories from the path I have traveled. It will take you deep into my mind, my memories, and my nightmares. From drowning in the pool in the lake to looking for God in a snowstorm, to wearing clothes made from the human genome. Writing this book has been a two-year-long painful psychoanalysis session. I am constantly rearranging my emotional, spiritual, and intellectual furniture in order to better understand my journey.

 

 

Chapter 2

I’m suffocating in my own body, struggling for air that is not there. Cold currents drag me deeper down into the dark waters. Away from the surface, away from light, away from life. The dark and angry waters accelerate, swell, and morph into a flood, into a tidal wave, into a tsunami. With savage power, the tsunami sweeps in, rams through, crashes down, rips, and tears me apart. Each attack leaves me bloodied, broken, and breathless. There is no shelter, nothing to hold on to, nowhere to hide. After each attack, the current pulls me back into the deep anew. The tsunami is relentless with a singular purpose, like a predator hunting for prey. There is a rhythm, a pace to its never-ending violent onslaught. I am ragged, like a doll, like a ragdoll, twisting, turning, and tumbling in the waves. All that I have is this moment, this darkness, this pain. Each tsunami that tears through my worn and torn lungs leaves me gasping for air. Each attack crushes my lungs and squeaks out a sticky, slimy, popping sound of air blisters popping. As if they are in a vice, under pressure. This, my sticky, slimy sound haunts me and only grows louder and louder with each attack. As the attacks keep on coming and they do keep on coming, the popping sound soon fills my room. The sound spills over and seeps through the crack under my door and flows down the hall into the living room.

 

Each shallow, panting breath that I take, generates less and less oxygen, and is more difficult than the preceding one. The air escapes me, does not connect, and mocks me with its available unavailability. Everything hurts, even my fingernails and my entire body cries for, screams for oxygen. Mucus covers my lungs like a lead blanket, drowning, and suffocating me at the same time. It’s like having a pillow held tight over your face while water is being poured straight into your lungs.  

 

Please let me be, just this one time, please, I plead. How did it come to this; it should not have come to this. Let’s make a deal, a devil’s bargain if you would. Just let me go this one time and, oh what’s the point. I know better than this. The tsunami has no feelings and can’t be stopped or reasoned with, so why try? My head is heavy, pounding like a boxer has beaten me to a pulp. Nauseous, hot, blood running dark without oxygen. Lungs filled to the brim, filled with slime, filled with mucus. All of my focus is on how to breathe, how to get air, how to bridge this moment to the next, everything else fades, falls by the wayside. Nothing else exists, all there is this, this moment, this now, this pain.   

 

During my long struggle I have learned a thing or two about my disease. So, yes, I knew what this was, long before the first popping sound could be heard. This is my life and the popping sound has become my soundtrack. Still, it might have been different this time. In a state of denial is where I live, but here is to hope, wherever mine has gone. Like Gatsby in his red silk pajamas, holding a champagne glass, toasting the heavens, hoping for hope. Here is to hope, he says, wherever you have gone. Even Gatsby, hoping for hope and toasting hope in his red silk pajamas won’t bring mine back. I am beyond hope, my hope is long since gone, gone without a trace. I am stuck here in this tsunami and this time is turning out to be the same different as the last time and the same different as the time before that. I end up in the same place each and every time, it is not a question of hope lost; it is just denial and disbelief that this is actually happening. I am exhausted from having to go back and forth to the emergency room like a yo-yo. One year, I spent almost two hundred days in the ICU. I am lost in a sea of sterile, antiseptic, whitewashed, never-ending series of hospital rooms. 

 

Each pneumonia bares down the same steep path. The further down the path I go, the more difficult it becomes to process my surroundings, to focus on anything but the next breath. The living room soon bends and extends beyond the horizon into infinity. I feel lost in here, it is too vast and open. I can’t breathe in this openness and I feel the panic trickling up my spine. Just as if I was standing too close to the edge of the Grand Canyon, slipping. I must retreat to something smaller and more manageable. So, I escape the living room for my bedroom. At least in there, I feel safe, at least for now. In here I should be able to breathe, surely it will be much better in here. But soon even my bedroom feels too big, much too big. And once again the room seems to bend beyond preview, far beyond what I can see into eternity. My surroundings fall apart, become shapeless, crumble, and implode. All that I can do is try to draw my next breath. My lungs keep on popping like a microwave popping popcorn. My only escape, my only refuge, my only option left is to escape within. I close my eyes and hide behind my eyelids. In here I better be safe, for this is my final refuge. I have to sift for oxygen as I’m lying panting for air. The dark, bottomless ocean shifts and morphs into a tsunami, and once again, with hells fury crushes my lungs, smashes, rips, and destroys.

 

That evening, like any evening, I was sure that I could break the pattern. Like any good junkie, I thought that I could face my addiction alone. This is my struggle, the one that I keep on relitigating, fighting, and struggling with over and over again using the same tools, but still, somehow, expecting a different outcome. This fight is my cognitive dissonance, my madness. Like Sisyphus in Greek mythology, I keep on pushing the rock uphill, and like B.C., from the cartoon, the rock rolls right back over me. I know what to do, but I am still not doing it. Instead of going to the ER like I should, as I must, I’m fighting to stay at home, for another minute, for another moment. But it is getting harder and harder; I am floundering to take my next breath and my lungs keep on popping. Trying to breathe through mucus is like breathing through tar.  

 

Chapter 3

At least I am still here at home in my room, surrounded by my things that tell my story. A six-foot-long Japanese scroll hangs opposite my bed, to the right of my door, and just to the left of my wardrobe. I bought it in Tokyo from the oldest shopkeeper I have ever met, she had long white hair and was paper-thin. I remember thinking when I purchased the scroll of all the things her eyes must have seen during the twentieth century. The Second Sino-Japanese War, the Second World War that followed, and the detonations of Little Boy and Fat Man over Hiroshima and Nagasaki. The surrender of the Empire of the Sun and the subsequent rebuilding of Japan into an economic juggernaut. To the left of my bed, hangs a large black and white photograph of The Golden Gate Bridge taken from Baker Beach with Marine in the background. The waters under the gate look inviting but are cold with strong currents. Once upon a time in a different life, I lived not too far from where the photo was taken. When my bedroom door is ajar, I see a framed, black and white photo of the Flat Iron building in New York City hanging in the hall. I spent a miserable year in the city, it was the wrong year to be there, it was the year of the attacks. I remember the dust that covered everything, the posters of missing families, and the endless playing of funeral bagpipes.  But in time even the harshest of memories acquire rounder edges and become infused with nostalgia.

 

To my right is a large glass door and window which opens toward the courtyard. Outside of my window, the world is the way it should be, the way it’s supposed to be. Out there, time exists, but in here time has slowed down to a trickle of broken frames. Out there the world is crisp and precise, in here the world is nebulous and out of focus. Still, I am searching, trying to find something, anything familiar in an unfamiliar, unfocused world. Just opening my eyes takes all the effort that I can muster. The world remains out of focus, a mystery to me. But by now I am too tired to care. All that I am doing is trying to draw the next breath, will there be air? My world keeps on imploding into nothing. I’m too tired, too spent, and too exhausted to fight for much longer. I am trying to hold on, trying to find normality in an abnormal world. I become weaker with each shallow, failed breath, gasping for air like a fish out of water. My lungs continue to pop.

 

In the room down the hall, there is life, laughter, phones, and TV. People are talking, I hear voices, voices that I know, and love. If I could only be out there with them and be like them, if only. I would settle for anything, not being me as long as I could be out there with them. I could use a break, a vacation from me. I am running a fever; my pulse is racing, and my mind is reeling. If I only could be there with them for a moment. 

 

Outside snow is falling from a dark winter sky. It is no later than three p.m., unbelievable that it can be this dark, this early. Christmas lights are long since gone. Pale lifeless light spilt over from neighbors’ windows flows down into the courtyard, casting long foreboding shadows. It is cold out there with snow and ice, but colder still in here. I feel the air from the air conditioner sweeping across the bed. As always it is set to as cold as possible, full blast at full speed, even now in the dead of winter. My feet are bound to keep from moving at night, traveling. I lie in bed without a t-shirt with a thin single sheet pulled down to my knees. My assistants walk in and out of my room wearing thick winter clothes, long pants, sweaters, and jackets. Ice crystals form on the inside of my window, a crunchy sound every time my sheet ripples. It is cold in here. Outside snowmen are being built, snowball fights are fought, and cross-country skiers are skiing. Life is being lived. But I am in here, in my bed, drowning, struggling, gasping, and fighting for air that is not there.

 

I am caught in this eternal downward spiral that just keeps on going and going and spinning further and further out of control. Each journey to the ICU leaves me weaker and weaker and the weaker I become, the faster I get sick, and the sooner I’m back in the ICU. Then out of the ICU, now weaker still with a body on the brink of exhaustion, with a broken immune system, and in the blink of an eye, I am back in the ICU again. This spiral keeps on going like a self-licking ice-cream cone. There is no life in the spiral, all there is, is dying. I am not living; just existing in my anemic, desolate, and barren landscape. I just keep on holding on for one more ride, clinging to the rusty metal bar as the merry-go-round keeps on churning in my own private hell.

 

Chapter 4

I close my eyes and images flicker from a more innocent time, a time when the future seemed wide open and endless. Ice-cream on the beach by the pool that is suspended in the lake. A hundred yards off the beach the floating pool was connected to land by a wooden pier. It was August and I was trying to get the last out of a dying summer. The low sun was losing its luster and the trees were changing color. Soon they would drop their fall foliage for a winter slumber. But not just yet. My mother was there with me. In my mind, I can see her as clear as if it was yesterday, thin with short salt and pepper hair and thick, black-rimmed sunglasses. She was lighting a cigarette, a Blue Blend, a low tar menthol cigarette for women who didn’t want to admit to smoking. She never smoked, if I asked, she would deny it while holding a lit Blue Blend cigarette in her hand. Are you going to believe me or your lying eyes? She would say with a mischievous smile.

 

Still, when it suited her, she was an avid smoker. An ambassador for smoker’s rights. A rebel at heart, she embraced her inner smoker when she each and every morning stopped for a smoke break under the large no-smoking sign at Central Station. She was a rebel and a provocateur, almost always on the wrong side of every issue and she knew it. But she did it for shits and giggles, to provoke a reaction. She would gladly stand on a crowded city bus, filled with retired people, arguing that people older than sixty-five should not be able to vote. When this did not stir enough of a reaction, she would argue for mandatory end of life services at eighty.  My mother regarded protesting as much more than merely a civic right, it was a civic responsibility. She said that conversation was the lifeblood of civilization. One of my favorite photos of her in London, the city of my birth, is of her standing on the grass behind a sign saying KEEP OFF THE GRASS, smoking.

 

I glanced over in her direction and she was not looking back, lost in a book as always. This was the golden moment that I had been waiting for. I quickly dove down into the deep end of the pool. Swimming down to the bottom of the five-yard-deep, blue-canvased pool was difficult on its own for a young boy. The soft walls moved with the surrounding waters, shifting. But down here, five yards below the surface, was the challenge that I sought. There it was, I held on to it with my hands, the challenge, the pipe. A metal pipe connecting the main pool with the service pool. It was not meant for swimming, it was in fact, strictly forbidden. But surely it could be swum? If so, I could swim it, I could hold my breath longer than almost anybody at my school. There was a warning sign on the filter, that said, Do Not Remove. But why would that stop me? While swimming and diving in the pool all summer long I had discovered that the filter looked rusty and seemed loose.  If so, it should be easy to unscrew and push aside. Then the pipe could be swum all the way to the connecting service pool on the other side, at least in theory.

 

Time to test the theory and put it into practice. I rather quickly managed to squeeze past the rusty filter, but the pipe was even snugger than I had expected. The purpose of the pipe was to allow for chlorine to be mixed in the service pool and then to float through the pipe into the main pool. The pipe was about ten feet long, narrow, and dark. The only light in the pipe came from the service pool. These are the slowest ten feet that I had ever swum, but I was finally at the other end, looking forward to surfacing and getting badly needed air. But then, something unexpected, something strange, a second filter at the end of the pipe on the service pool end. Why would there be a filter there, it makes no sense, a filter in the service pool? It seemed counterproductive and illogical. Still, I should’ve checked this out, but I hadn’t. Now I was stuck in this metal pipe with no chance of turning around, the only way out, was through. The filter which I had to get through was in far better shape and screwed on tighter than the one in the main pool.

 

How could I have been this stupid and not checked this out before? Trying to hold back my panic, I stayed focused on what I had to do to get out of this. My weak oxygen-deprived fingers slowly, much too slowly, managed to unscrew the first bolt. My lungs were burning, on fire, reality had lost color and was now black and white. I knew that I simply did not have enough air to unscrew all of them. This realization, that I was almost out of air, was a moment of sheer terror. As luck would have it, the second bolt came off surprisingly easily. With all my strength I managed to push the filter aside, just enough to allow me to squeak by. It was jagged and I forced my way past with injury, the metal filter and bolt holdings tore flesh from my hips.

 

My bleeding hips colored my jeans dark and I quickly sat down on the blanket so that my mother could not see me bleeding. She was now smoking, not smoking another Blue Blend menthol cigarette. A sense of shame washed over me; how could I have been this stupid? What would have happened if I had been injured or worse? What would this have done to my mother, she had enough on her plate as it was. How could I have done this? We had an understanding, there was nothing that we could not tell each other, but this, this I could not tell. It was a betrayal, either way; I had done something idiotic, something that could have made her already difficult situation intolerable. But this, this I could not tell her.

 

After a long brutal slugfest of a divorce that broke my mother and scarred me, there was just the two of us against the world, it really was. My mother hung on to the large house for far, far too long. She did not have enough money to pay the heating bills over winter, so only a few of the rooms were heated, my bedroom, her bedroom, and the kitchen. The rest of the house was ice cold and I remember walking down the stairs, past the large living room, the connecting corridor, and the dining room, freezing my butt off, before reaching the warm kitchen.

 

We had to stick together as I had been confronted with the cruelty of conveniently shifting friendships only six months earlier. My mother and I had gone to dinner with mutual friends of my parents. I could read my mother’s face like an open book, and I could see just how tough it was for her to be out like this, to a so-called casual dinner with friends. All that she really wanted to do, needed to do was to sit at home and cry in her warm kitchen. But she was hanging in there, stiff upper lip, as she would say. Then out of nowhere, her friend for more than twenty years, casually mentioned that she and her husband were to go on vacation with my cheating father and his girlfriend. My mother sat silent, but tears streamed down her cheeks. The dinner party fell silent, my heart broke and the walk home was cold, long, and seemed endless. This was a betrayal of epic proportions, twenty years of friendship gone just like that. I would rather swim the tube a hundred times than sit through that dinner again.

 

That popcorn popping sound is growing louder and louder. There is no air in here, if there is, it does not connect with me. If the world to a worm in horseradish, is horseradish, then my world is mucus. I am awash in it; I am swimming in it and I am drowning in it. The tsunami keeps on coming, wrecking, destroying, and obliterating me. Its brutal force with its pure, natural, unrestrained violence draws blood, tears my flesh, and breaks my bones. There is a beauty, a purity to it, here at the end, everything seems so simple, so uncomplicated.

 

Chapter 5

Just turned eighteen and having spent the last three months working hard in a kibbutz by Lake Tiberias, I decided to go traveling down the Nile. We were four poor students, spending our time between semesters in Israel, traveling on a dime. Stealing toilet paper from the Cairo Hilton, lodging at the cheapest possible inns. By hook and by crook, we made our way down the Nile, past Luxor, and all the way to Aswan. Once there, we found a shack to stay at, and when I say shack, I mean it. There were no windows, just barbed wire openings, and unfinished cement walls. The room smelled of garbage, there were no beds, only a few mattresses on the floor and the room was full of buzzing mosquitoes. Armored bars stuck up from the cement roof. An apparent tax scheme, I was told; an unfinished building could not be taxed. What self-respecting completed building would have armored bars shanking the sky. The road outside was a dirt road, traveled mostly by livestock. Their droppings blended nicely with the garbage outside. Down the block, behind a small hole in the wall was the village baker. Everything was made to order, and everything tasted salty.

 

Here in this garbage enveloped, fly-infested shack, I fell ill. The only nutrition available was the salty bread that had to be washed down with bottled water. It was the first time I had been this ill, and so far away from home. As it got worse, I became unable to swallow bread, growing weaker and weaker. Days passed; I lay in bed not knowing what to do. Foreboding shadows crept across the wall, flies kept on buzzing and our meager funds kept on dwindling. This was a time before cell phones, and down here, deep south in Egypt, fixed lines were few and far between. To make things worse, the AIDS scare was in full swing and unclean needles must be avoided at all cost, that much we knew. With all this fear in mind and with my meager budget, seeking medical help down here was not an option. My girlfriend, a Swedish nurse, helped me to get on the train to Cairo. Twenty-four hours later we finally passed through the suburbs of the city, next to the pyramids.

 

Days without eating, starving, looking for somewhere, something to eat were coming to an end at last. Across a six-lane road in Cairo, there was a Burger King. I ordered, extra everything and double fries and a milkshake and an apple pie, and… it all went down too fast, much too fast, much, much too fast. It boomeranged almost immediately and came back up over the table. This was not popular with the restaurant staff, and understandably so. I stumbled out into traffic only to collapse in the middle of the six-lane road. We managed to get into Israel without speaking. I collapsed once we had cleared customs. I spent the next ten days in a Tel Aviv hospital, recuperating. After this ordeal, I went straight back to the kibbutz to collect my belongings. My friends with whom I’d been working and living in close quarters for the last three months sat around the campfire as always. I walked up to them ready to share my war stories. I tried to speak but my voice failed me. They looked at me like I was a stranger, nobody recognized me. I had lost so much weight that my facial features had changed.

 

A strange feeling being a ghost, unrecognizable to friends. I had served them all beers and booze in my bar, only a hundred yards from the campfire. In Egypt, I had become sick with mononucleosis. Mono makes the body much more susceptible to MS, I have been told. Knowing this helps puzzle together why I became ill. The dark, the Nordic dark with long winters, vitamin D deficiency, mono, genes predisposed to MS, and something else that is the secret ingredient are the puzzle pieces that solve the puzzle. For me it is academic, I’ve gone too far, but I still want to know the answer to why the disease erupted. But most of all I want to make sure that it stops here with me.