A Thousand Steps
The Chinese philosopher Lao-tzu wrote that a journey of a thousand miles begins with a single step. While that may be true up to a point, as an inveterate traveler and travel writer my own experience is that a journey of any mileage begins with a thousand small steps. There are the conscious undertakings: guidebooks, magazines, web sites and travel brochures to be read; plane and train tickets to be bought; car and hotel reservations to be made; clothes and equipment to be purchased; traveling companions to be communicated with; and family, friends and coworkers to be notified of one’s absence and plans. Then there are the subconscious influences that have led to a voyage: the postcard sent by grandparents years ago from Africa that fueled a yearning for far-off lands, the childhood family ski trip to New England that fostered a love of athletic adventure, the unhappy breakup of a young love affair that sent us off in search of a happier time and place.
The journey described in “Passage to Nirvana” began with a number of steps, both large and small, conscious and subconscious; it arose from the ashes of a series of sweeping personal tragedies, as well as a thousand more mundane influences. It began with despair, like the breakup of a young love affair, but it also began, like all journeys, with hope, aspirations, ambition and excited expectations for something better — otherwise why embark on the voyage?
On the morning of May 15, 2002, I was standing in a car wash in Riverhead, New York, on the Eastern End of Long Island. I was on my way to meet a potential new client, an elegant female real estate developer who was interested in cashing in on the booming New York City real estate market. I was forty-four, a professional writer, and had been doing copywriting for prominent New York developers, writing big, expensive, glossy marketing brochures, and my friend David, who was a construction contractor, thought I could give this developer a tour of the up-and-coming areas of Brooklyn, where old warehouses and factories were rapidly being turned into luxury condominiums, popping up like mushrooms after a long rain.
It was a messy time in my life: my wife’s business was failing, and even though I had pumped huge amounts of time, money and energy into helping her make it succeed, she still blamed me for its failure. After fourteen-hour days of sweeping floors, shipping orders, fighting with creditors and trying to convince investors to put more money into the company, I would come home not to a place of refuge, but to a spouse who would scream at me, telling me how awful I was as a person, a husband, a father and businessman. Maybe she had a point, maybe not, but the undeniable reality was that the stress of a failing business had soured a once-loving relationship.
There had been a time when Belinda would paint cards for me with a simple abstract watercolor on the outside and a message inside, something like “Thank you so much for everything, if it falls apart we’ll move to the Caribbean and live happily every after! Love, B.” But that was all in the past. Now, in spite of two years of couples therapy, we were headed for an acrimonious divorce, which would separate me not only from my wife, but from our two young boys, ages eight and five, who were everything to me. The business failure had left us financially destitute, on the verge of bankruptcy and in danger of losing our house. As if that were not enough trauma, my mother had recently suffered a serious accident, leaving her an incapacitated invalid, a shadow of her former vibrant self at the young age of sixty-seven. As a result I had spent a great deal of time traveling back and forth to Buffalo, New York, where I had grown up, helping my father and sisters with my mother’s care.
Things were looking up in my business life, however. I had a number of good new writing clients, both commercial and editorial; I had just returned from working for NBC Sports at the Salt Lake City Winter Olympics. One of my favorite new clients was the Environmental Defense Fund, where I felt I was doing work that also had some redeeming social value. I had recently begun doing marketing copywriting for Lavazza Coffee, and there was talk of my traveling to Italy to visit the company headquarters and get a real sense of how important the Italian idea of la dolce vita, the sweet life, was to the company’s philosophy and products. Hope and rejuvenation were in the springtime air as I drove along the country roads from my house toward Manhattan, marveling at the beauty of apple orchards in full bloom and farmers’ fields filled with bright green shoots and flowering crops.
I was scheduled to pick up David and the developer in Manhattan on that May morning, and since I had two small boys, as well as an energetic golden retriever, the car was full of dog hair and lollipop wrappers and other assorted detritus; it was not clean enough for chauffeuring an important prospective client around town, especially a sophisticated businesswoman. So I stopped at a car wash that would clean and detail the inside of my dark blue Nissan Pathfinder. Apparently I had just gotten out of my car when a car wash attendant backed a large Ford SUV out of the detailing shop and, speeding in reverse without looking behind him, ran me down. I had my back to the speeding car, and never heard it coming over the din of the car wash. As one of the eyewitnesses later told the police, I “never had a chance.”
I say “apparently I had just gotten out of my car” because I have no memory of that day, or the days afterward, or, strangely enough, of the weeks leading up to the accident. I hit my head violently on the pavement, fracturing my skull and losing consciousness. Cerebrospinal fluid oozed from a crack in my skull behind my left ear. I was taken by ambulance to a local hospital, where they did an MRI and realized my injuries were too severe for them to treat. Depending on who was reading the films, the diagnosis was either a subdural hematoma or a subarachnoid hemorrhage, or both, on the left side of my brain. I was rushed to Stony Brook University Medical Center, which had a world-famous neurological trauma unit. Regardless of what the MRI diagnosis was, there was no doubt I was in a light coma and had bleeding and swelling in my brain. The Stony Brook doctors diagnosed what the medical profession calls a Traumatic Brain Injury, or TBI. In the pre-political correctness days, it would have been called simply brain damage, or being kicked in the head by a horse.
David was left standing in Manhattan with the developer, looking at his watch, assuring her that I was usually very punctual. He called my cell phone numerous times and kept getting voice mail. When I didn’t call back he finally started the tour of Brooklyn without me. Later that day he called Belinda to see if she knew where I was.
“He got run over by a car in a car wash and he’s in the hospital,” she told him, laughing.
“He’s okay. He’s got a concussion or something. Can you believe how stupid he is? Only he could do something like that. What an idiot!”
Months later, when I was finally well enough to ask questions about what had happened that day, David described this conversation to me; he was still marveling at her reaction. “She was just laughing the whole time, I couldn’t believe it,” he said.
Certainly my wife’s reaction was extreme, her perceptions colored by our impending divorce, but many TBI patients have similar problems with family: you look fine, you’re talking, you appear alert. So you got a bump on the head? So what? There’s nothing the matter with you; why can’t you just get on with life? So you’ve got a headache? So what? We all get headaches. Snap out of it!
My wife’s response to the accident would just be the beginning of many such reactions from people who didn’t understand the magnitude of what had happened to my brain.
Medically I was lucky; the bleeding stopped, the swelling receded and surgery was avoided. While serious, it appeared that my injuries would not be life-threatening. Belinda brought Chas and Niall to the hospital, where these two small boys found their father trussed up with tubes and monitors and his head resting on a blood-soaked pillow. It was scary for them to see their father this way, especially since they had recently seen their grandmother lying in a hospital bed, unconscious from a head injury, unable to speak or walk. Fortunately I appeared well enough to the casual observer. I was talking and appeared alert.
Appearances were, however, deceiving. I was ranked in the middle of the Glascow Coma Scale, a measure of consciousness. Like most people, I assumed from watching medical dramas on television that a person was either in a coma — lying in a hospital bed, eyes closed, unaware — or out of a coma: awake, talking, moving. But there is a whole range of in-between states in which the patient is still considered to be “in a coma.” On a scale of one to fifteen, the deep, unresponsive comatose state is a three on the Glasgow Coma Scale and the fully awake, conscious state is a fifteen. I was somewhere in the middle.
David called my sister Debbie in Buffalo to tell her what had happened, and her first thought was, “Oh God, this can’t be happening again. First Mom, and now Lee!?” Debbie called the hospital and a sympathetic nurse told her to get down here, now, after seeing the way Belinda treated me. Debbie left her husband and children, got on a plane and rushed down to help care for her injured brother.
When David came to visit the day after the accident, I was lying awake in bed. Knowing how much I liked to read, he had brought with him several magazines. He told me later that as he entered the intensive care unit, he was amazed and angry that the hospital had put me in a bed with old, dirty sheets. He couldn’t believe how dirty the pillowcase was behind my head. It was only upon coming closer that he realized that the “stains” were really blood and fluid that still oozed from my skull. David is a tall, lanky, bespectacled, preternaturally calm person. For him to say he was shocked is a momentous thing.
In the years since the accident, what happened next has become one of his favorite stories, and he never tires of telling it.
The story starts with me beckoning him over to the bed with my finger. “Come here, I have to tell you something,” I say in a conspiratorial whisper.
He bends his ear closer.
“You have to get me out of here,” I whisper, barely audible.
“I met my mother out in the bay last night, and we unloaded a shipment of guns from her boat onto mine.”
David and I had been friends since childhood; we had grown up down the street from each other in a suburb of Buffalo and our parents had been good friends. Our grandparents had been good friends. He knew my mother well; Ann Carlson was a respectable, solid Midwesterner; she did not run guns. He also knew about her accident and that there was no way she had been out in the bay on a boat. If my mother had been able, she would have been in the hospital by my side.
“Oh, I see, and what are you doing with the guns?”
“We’re going to sell them in a yard sale on Sunday.”
The image of my mother as a gunrunning moll coming in under cover of darkness on a tramp steamer with boxes full of AK-47s brought a chuckle to David’s lips, as did the image of my mother and me selling them off tables in my driveway on a sunny spring Saturday morning. I have no idea where this outlandish fantasy came from, but it showed how out of it I really was. I was completely serious about the whole gunrunning story and at this point David realized that although I appeared fine, there were some very real problems with my cognitive functioning. He told Debbie that instead of magazines he could have just brought me a paragraph; since I couldn’t remember anything I could just read the same paragraph over and over again.
There were other strange and weirdly comic moments in those first few days. The doctors asked me their standard neurological questions to determine my cognitive functioning. They asked me questions such as where I worked, was I married, where did my wife work? I told them she worked for Ralph Lauren, which had been true at one point in our lives, but she had not worked there for eight years. Another standard question asked of all patients in neurological intensive care is “Who is the president of the United States?”
“George Bush,” I correctly answered. What the doctors didn’t realize is that I was thinking of George Bush Sr., who had been president nine years before, at the same time my wife had worked at Ralph Lauren, and not the current president, George W. Bush. You’d think that smart, educated doctors would come up with a better question.
Another odd occurrence was that the car right behind mine, the primary witness to the accident, turned out to be my wife’s divorce lawyer. He had never met me or seen me, so didn’t know who I was until the police pulled my wallet from my pants as I lay unconscious, read the name off the license and asked if anyone knew me.
“Oh my God,” my wife’s lawyer said, “if I wasn’t already suing him I’d be following the ambulance to the hospital to get him as a client!”
You can’t make this stuff up.
When David heard that my wife’s lawyer had been first on the scene, he jokingly asked if I had seen an envelope stuffed with cash change hands between the lawyer and the car wash attendant. This was, after all, Long Island, land of Amy Fisher, the Long Island Lolita who shot her lover Joey Buttafuoco’s wife. It was also the general locale of the famous Woodward murder case where a wealthy socialite shot her husband, which was the basis for the book “The Two Mrs. Grenvilles,” and the scene of the famous “Murder in the Hamptons” where multimillionaire financier Ted Ammon was killed by a electrician who turned out to be his wife’s lover. Stranger things had happened on Long Island than envelopes of cash changing hands in car washes. I was not a multimillionaire and my wife had no money to bribe car wash attendants, so of course my sister, David and I knew this was just a stupid accident, but his joking helped ease the tension of my lying in an intensive care unit with a fractured skull and a fractured home life.
Even though that lawyer didn’t follow me to the hospital, another lawyer showed up in those first few days. Apparently he had been sent by my own divorce lawyer. He was a seemingly decent person, but he was also an ambulance chaser. It was surreal to have a total stranger in a suit sitting by my bedside pretending to care about my well-being, when he was really there for the money. The last thing I needed at the moment was to worry about lawsuits, money, etc. I needed to concentrate on my health. The next day when Belinda brought our boys to the hospital, the boys were chanting, “We’re going to own a car wash, we’re going to own a car wash,” as my sister just rolled her eyes, indicating to me that she had nothing to do with where they were getting their view of what was important.
In the days that followed the accident my wife’s behavior continued to be so lacking in compassion and understanding that the doctors told my sister they would not release me until they knew I was going somewhere where I would be properly cared for, far away from my wife, who would be “poison” to my recovery. So when I was discharged from Stony Brook after five days in the intensive care unit, my sister helped me into a wheelchair, then into a waiting hired black car with driver, then wheeled me onto a plane and flew with me to Ft. Myers, Florida, where she handed me off to my father, who could care for me and drive me to various doctors, specialists and therapists every day: cognitive therapists, physical therapists, neurologists, neuropsychologists, vestibular therapists, occupational therapists, psychologists and others.
Unfortunately my father knew all about traumatic brain injuries from my mother’s accident, which had been more serious than mine. On Friday evening, September 28, 2001, eight months before my accident, my mother had fallen down a flight of basement stairs while looking for the bathroom at a dinner party in an unfamiliar house. She had opened a door, stepped into the darkened space and tumbled down the steps, landing on her head on the concrete floor. She was rushed unconscious by ambulance to the hospital, where surgeons were forced to remove the part of her brain that had been critically damaged. She was in a deep coma — the dramatic television kind — for weeks.
When my mother regained consciousness after a month she was severely disabled, confined to a wheelchair, unable to walk, talk, feed herself, go to the bathroom by herself, bathe herself or perform the thousands of other small daily domestic tasks we all take for granted. I spent the months after her accident helping my father and sisters with my mother’s care, traveling back and forth to Buffalo. After several months of therapy in a nursing home, my mother was mobile enough to travel, and I helped my father wheel my mother onto a commercial jetliner for the flight down to their winter home in Naples, Florida. The house was a single-story, two-bedroom old-style Florida bungalow, with a white pea gravel driveway, carport and a combination living room/dining room. My father slept alone in the master bedroom while the second bedroom became a hospice room for my mother, where round-the-clock caregivers bathed her, dressed her and watched over her while she slept. The house also had a small porch where my mother could sit outside in her wheelchair, looking at the water in the small canal behind the house, watching birds flit from orange tree to avocado tree to palm tree while caregivers spoon fed her and wiped spittle from her mouth.
Just when our family was recovering from the shock of what had happened to this vibrant matriarch, my accident occurred, and my father suddenly had the burden of being the caregiver not only for his wife of forty-six years but also for his forty-four-year-old son — both with traumatic brain injuries.
In the next few months my wife abandoned me, sold our house to her boyfriend, took our two sons and moved to Wisconsin, leaving me with no money, no health insurance and no home — no place to sleep other than my parents’ living room couch. (It sounds like a bad joke, but it’s all true.) My mother continued to deteriorate until her body finally gave out and she mercifully died in her sleep, leaving my father and me both grieving and grateful for her death. One of my most vivid memories is of the parallel tracks left in the white pea gravel by the coroner’s gurney, and my father in the driveway with a rake, smoothing out the gravel, erasing the evidence of her long passing.
When my doctors finally released me from rehabilitative therapy in Naples after a year, I moved back to Southold, New York, on Long Island’s North Fork, one town over from my previous home, and I spent the next five years trying to work my way back to some sort of normal life: renting and furnishing a house so I could have a home for my children when they visited; trying to find work and get back to writing; trying to find a woman who would accept me as I was and be supportive and loving not only to me but to my children.
In the midst of trying to regain some sense of normalcy, my brother-in-law Kevin, who was married to my other sister, Kristan, and who was also a good friend, was diagnosed with throat cancer at age forty-seven. He was a vibrant, intelligent person, a lawyer who had forgone entering private practice to instead help the poor and underprivileged. While many lawyers become public defenders for a few years after law school and move on, he had stayed with the public defender career path, choosing public service over private financial gain. He took a personal interest in helping his clients, acting like a social worker as much as a lawyer. Why had cancer targeted him?
I returned to Buffalo to help Kristan, who had two young children, while she went to the hospital every day. I would take the kids to Buffalo Bisons baseball games (Buffalo’s minor league team), or play with the kids in the backyard — basketball, street hockey — or help Elizabeth, who was only six, throw the ball for my golden retriever Henry, trying to do whatever I could to take their minds off a dying father who looked like a skeleton, his emaciated body and hollow eyes staring out like a ghost from his hospital bed in the terminal patient ward at Roswell Park Cancer Institute.
His dying was prolonged and painful, leaving all of us emotionally drained and leaving my sister a widow with two young children.
Then only a few months after Kevin’s death my Aunt Leslie died of ovarian cancer at age fifty-nine. She had been a successful chef in New York City, the first woman ever hired at the Waldorf Astoria, a personal favorite of James Beard and a well-known innovator and food personality who had been featured on television and had written several successful cookbooks. I had often visited my aunt and Uncle Phil’s home in Bronxville with my boys, laughing around the dining room table as we shared family stories and home-cooked meals. How could cancer have taken her too?
The cost of my mother’s care nearly bankrupted my father, and my accident did bankrupt me. All the dying and illness and loss in our family left me physically, emotionally, psychologically and financially drained. It was a difficult time.
Forgetfulness of Things Present
When I returned to Southold one of the most severe lingering problems was memory loss. I would forget people’s names, forget the way to a friend’s house, even though I’d been there hundreds of times. I’d leave food burning on the stove, or stand in my living room with car keys in hand, confused and forgetful about where I was going or what I was doing next. But the biggest problem was work. I tried to get back to work as a writer, but I would write a marketing brochure for a client and by the time the client had reviewed the copy days later and given comments for revisions, I would have totally forgotten what I had written. I would sit and stare at the words, wondering where they had come from. Had I written them? I had no idea, no recollection at all.
The accident had changed my ability to be who I once was. One of my best friends who owned a design firm and who had given me freelance copywriting work before the accident was looking to grow his business and hired me full time. He fired me after a few weeks when it became apparent I could not do the work. I had never been fired from a job in my life. It was devastating to me and not an easy thing for him.
TBI is a huge and little-understood problem in the U.S. and can have profound effects on people’s lives. According to the Brain Injury Association of America, 1.4 million people sustain a traumatic brain injury in the United States every year, of which 50,000 die, 235,000 are hospitalized and 1.1 million are treated and released from an emergency room. The number of people who sustain a brain injury but receive no care is unknown. To help put that number in perspective, the American Cancer Society estimates that in 2009 there will be 1.5 million new cancer cases, roughly the same number as the 1.4 million new TBI cases. Cancer kills many more people — approximately half a million a year — than TBI, which has annual death rates similar to motor vehicle crashes (although some TBI deaths are also motor vehicle deaths). The lower death rates for TBI mean there are many more TBI survivors living with ongoing disabilities. With cancer you can be “cured” or at least in remission. Usually that is not the case with TBI, where the resulting disabilities can cause lifelong impairments.
The leading causes of TBI are falls (twenty-eight percent), motor vehicle-traffic crashes (twenty percent), struck by/against events (nineteen percent) and assaults (eleven percent). Blasts are a leading cause of TBI for military personnel in war zones. TBI has been more in the news due to the wars in Iraq and Afghanistan, as well as the many athletes who are suffering head injuries. Males are about 1.5 times as likely as females to sustain a TBI. The two age groups at highest risk for TBI are children aged zero to four and teenagers aged fifteen to nineteen. African Americans have the highest death rate from TBI.
Direct medical costs and indirect costs such as lost productivity totaled an estimated $60 billion in the United States in 2000. The Centers for Disease Control and Prevention estimates that at least 5.3 million Americans currently have a long-term or lifelong need for help to perform activities of daily living as a result of TBI. According to one study, about forty percent of those hospitalized with TBI had at least one unmet need for services one year after their injury. The most frequent unmet needs were improving memory and problem solving, managing stress and emotional upsets, controlling one’s temper and improving one’s job skills. TBI can cause a wide range of functional changes affecting thinking, language, learning, emotions, behavior and/or sensation. It can also cause epilepsy and increase the risk for conditions such as Alzheimer’s disease, Parkinson’s disease and other brain disorders that become more prevalent with age.
As might be expected Traumatic Brain Injury is not the sole source of sudden-onset brain damage and brain-damage-related disabilities. Stroke can have similar debilitating effects, as can Alzheimer’s, repeated concussions (Chronic Traumatic Encephalopathy), brain tumors and other brain-related diseases.
In many cases TBI survivors live in a kind of Through-the-Looking-Glass world where normalcy is a relative concept, and since their disabilities are not readily observable to the untrained eye, friends, relatives and acquaintances don’t understand why the TBI survivor is so forgetful, or can’t be more organized, or has problems with time, or hearing in a crowded restaurant or a myriad of other subtle problems. I was standing with a group of people at a party several years after my accident, people I didn’t know well and who didn’t know I was a TBI survivor, and they were talking about another person who didn’t remember people’s names and how rude he was because of this. I wondered what other people must think of me, since I often couldn’t remember people’s names; at that very moment I had forgotten the names of the people I was standing with. I didn’t want to be judged, to be seen as rude or uncaring; all I wanted to do was leave the conversation and slink off into a corner.
Several years later I was sitting at the bar at Claudio’s Restaurant with Bob, a strapping young ex-marine who suffered a Traumatic Brain Injury when his vehicle was hit by a bomb blast in Iraq. Even though we’re a generation apart, there was a common bond between two people who understood what it is like to have survived a Traumatic Brain Injury. That, and we were both sailors with a common love of the sea. Claudio’s is at the foot of the old pier in Greenport, the next town over from Southold, and claims to be the “oldest same family owned restaurant in the United States,” having opened its doors in 1870. The long classic wooden bar, with its brass cash register, high ceiling, old mirrors and slowly turning ceiling fans was the perfect place to drink a beer or a ginger ale, eat some chicken wings and watch a football game. There is even a trap door behind the bar where bootleggers hoisted cases of booze up from boats underneath the wharf during Prohibition. My mother would have felt right at home smuggling her guns here.
“You know, I always feel like I’m being judged by others who don’t know what happened to me,” Bob said.
“I know exactly what you mean,” I said. “It’s as if the Queen of Hearts is constantly passing judgment, yelling ‘off with their heads!’”
We clinked glasses, and drank a toast to being somewhere we could just eat, drink, watch football and not be judged.
There was one group, however, that didn’t seem to be judging me unfairly. The doctors and therapists understood. They were judging me by TBI standards, not by conventional “normal” standards. My doctors kept encouraging me to write a memoir of my experiences. Writing would be therapeutic, it would help me heal. It was the next logical extension to John Cheever’s famous dictum, “I write to make sense of my life.” But I would not be writing to make sense of my life, I would be writing to save my life. I would be writing to heal a battered brain, a wounded psyche, a mind and soul laid low by physical infirmity and psychic loss. Writing as therapy. Writing as catharsis. Writing as a healing art. But writing about my journey would also be something I could give back to the community, helping raise awareness of this illness in our society, as well as helping patients, family and caregivers to deal with the aftereffects and challenges of TBI. As someone who was a TBI survivor and had been a TBI caregiver, I had a unique perspective on how TBI affects both patients and family. And since I was a professional writer and journalist, I would be able to put it all together in a way that could truly communicate the magnitude of the problem. I was one of the lucky ones: I had not only survived, but through hard work and luck I had regained most of my faculties and would be able to write intelligibly on the subject of TBI. My doctors believed in me, and that in itself was incredibly healing.
There were several problems, however. First, the memory issues that were preventing me from writing simple short marketing brochures made it impossible to write a full-length book, no matter how good my note taking and file keeping. Second, the subject was so emotional that just sitting down to write about it would exacerbate my post-traumatic-brain-injury disorder, setting my heart racing, my palms sweating, my head pounding. The stress would intensify my memory problems, and I would sit at my desk, staring at the computer screen, stuck as I tried to remember a simple word. Sometimes I would burst into tears at this inability to perform so simple a task.
So I looked for a different way to write, a different way to tell the story.
Zengine of Ingenuity
I had been a student of Zen Buddhism prior to the accident. My spiritual path had begun twenty-five years before, when I had stumbled across a wonderful book, “The Snow Leopard,” by Peter Matthiessen, which had just won the National Book Award. The book chronicled Matthiessen’s search for meaning through Zen and Tibetan Buddhism after his wife’s death from cancer, culminating in a trip to the Himalayas where he searched for the elusive snow leopard, as well as the elusive wisdom embodied by reclusive Buddhist monks at the remote and mysterious Crystal Mountain monastery. Reading that book led to taking a comparative religion course, where my professor, Dr. Joel Smith of Skidmore College’s Philosophy & Religion Department, not only taught us in the classroom about the world’s great religions, but took us to a Buddhist monastery in the Catskills for an optional weekend retreat. As much as those influences had intrigued me, in my adult life I had been a spiritual dabbler; family, children, work and a wife who didn’t approve had all been obstacles to my becoming a more serious student.
The crisis in my marriage before the accident had turned me into someone I barely recognized. I would respond to my wife’s taunts by becoming angry and yelling back at her. I would be short and cross with the kids. This was not the calm, peaceful, loving person I wanted to be. I was an agitated, emotional mess. I had reached a turning point in my life that caused a newfound search for meaning, for happiness: Who was I? Who did I want to be? From my previous exposure to Zen Buddhism I thought that finding a meditation group might help calm my emotions. I sought out a meditation group near my home and was amazed and delighted to find that Peter Matthiessen had a small country zendo, or meditation center, about an hour from where I lived, which he called The Ocean Zendo. In the years since he had written “The Snow Leopard” he had become even more immersed in Zen and had become a Zen roshi, or master priest. I sent him a letter, and received a gentle and wonderful invitation to join his sangha, or Zen congregation. So I began to make the hour-long drive once or twice a week to the zendo, where I would meditate, join discussion groups on Zen Buddhist philosophy, and receive regular instruction from several of the teachers. At the same time I set up a small altar with black meditation cushions in a corner of my home office, and I would get up early each morning, before the children or my wife were awake and meditate for a half hour.
All of this had a steady hand in helping me deal with the crises in my life: a failing marriage, a failing business, a mother’s crippling accident. I was in the midst of this new path when my own accident occurred. Would Zen and meditation also help me deal with this new crisis? How would an ancient belief system coexist with modern medicine, if at all? Would the two complement or contradict each other?
In one of my first meetings with my neurologist, Dr. Mark Rubino, in Naples after the accident, I gingerly asked him about my Zen meditation: I told him of my Zen practice, and my daily morning meditation sessions that had been a regular part of my life before the accident. Dr. Rubino was the lead physician in the pantheon of doctors and therapists who had become the focus of my daily existence. He always took time to listen and to answer my questions fully. He was also my mother’s neurologist. I liked and trusted him.
“Can I still meditate?” I warily asked. “Would meditation be good or bad for my recovery?”
Even though Dr. Rubino was young — I guessed somewhere in his early thirties — and bright, insightful, energetic, wonderfully funny and seemingly open-minded, I fully expected him to be dismissive, since such irrational hocus-pocus as Zen would seem to be inconsistent with modern, rational scientific medicine. I grew up trained in a Western, rational mindset, and I fully expected a similarly trained Western doctor to pooh-pooh meditation as ancient Eastern superstition. Meditation had little in common with modern medicine and its emphasis on brain chemistry, drugs, machines — treatment modalities that had all been carefully researched and tested. I even feared that since Zen meditation emphasizes non-thinking, and since my whole problem was getting my brain to start thinking clearly again, that perhaps meditation would be detrimental to my recovery.
Instead I was surprised by his answer.
“That’s great,” he said, “it will be good for you. A lot of research has shown that meditation can help with anxiety, concentration, memory and other cognitive functions.
Go for it.”
That early encouragement to integrate ancient Zen practice into modern rehabilitative practice had a profound effect. It meant that Zen would not only help my brain heal, but would continue to be a vital part of my life, to grow and flower in ways that I would never have thought possible and ultimately to become part of how I would write the book that Dr. Rubino had been encouraging me to write.
Ever since I discovered Zen in college I had been fascinated by the beautiful brevity of its art forms, from the mysterious energy of the calligraphic brushstroke in an ensõ — the circle of enlightenment — to the freshness of a Japanese haiku, which opens slowly in the mind like a flower opening to the morning dew. So after my accident, as I searched for a way to tell my tale in a way that would be creative, beautiful, enlightening and helpful to others, I began to envision a way to write that was in the footsteps of this great and ancient tradition, a way to tell a story that owed much to the sensibilities of venerable Japanese poets such as Matsuo Basho or more modern poets such as Soen Nakagawa Roshi, one of the first Japanese Zen teachers to come to the United States. Basho’s “Narrow Road to the Interior” is one of the best-loved books of Japanese literature and tells the story of a five-month, 1,233 mile journey Basho undertook on foot as a wandering poet, accompanied by his friend Kawai Sora. This thin, spare book is written as a travelogue, combining both prose and poetry into a single, cohesive whole.
Soen Roshi did not write a book, per se, but the book “Endless Vow: The Zen Path of Soen Nakagawa” is a collection of his poetry, letters and calligraphy. It is travelogue of sorts in both poetry and prose, although it covers much more ground, from his youth in Japan to his voyage to America to his role in founding Dai Bosatsu Zendo, the first Japanese Zen monastery in the United States in New York’s Catskill Mountains. I felt a certain kindred spirit with Soen Roshi, not only from his writings, but because he himself suffered a Traumatic Brain Injury in his mid-fifties when he fell from a tree in Japan.
Exactly what happened to Soen Roshi is unclear, but according to the stories, he was missing for several days at the monastery. This in itself was not unusual, as he was known to be a bit eccentric and would often disappear for long stretches of time. In monasteries, someone going off alone into a quiet corner for meditation and solitude is the norm. But after he failed to show up for several meals and services, the other monks went searching for him and found him lying unconscious beneath a large tree, supposedly with a sharp piece of bamboo piercing his skull. The stories say that he had been unconscious for three days. The words Traumatic Brain Injury are never used in these accounts, but in 1967 TBI was little understood. It was assumed that Soen Roshi had fallen out of the tree, although what he was doing up in its branches nobody knew for certain. He could have been meditating, sitting in a crook of the tree, or he could have just climbed up to enjoy a better view. That’s the kind of person he was.
In later years Soen became a hard drinker, likely an alcoholic, and eventually drowned in his own bathtub, drunk. His drinking was said to be an attempt to deaden the constant pain he felt as a result of the brain injury, however Matthiessen Roshi has wondered how true this story is since he spent much time with Soen Roshi and never saw a scar on Soen’s shaved head. Matthiessen Roshi has wondered whether the story might be an apologia for Soen Roshi’s hard drinking, since sake is an integral part of Japanese culture, even among spiritual leaders. Even if the bamboo stake is an embellishment, I have no doubt about the brain injury part of the story. The narrative is too detailed to be fabricated out of whole cloth. And I understand only too well the pain, both physical and mental, that can result from a Traumatic Brain Injury. Darkness, depression and despair are some of the very real symptoms that many people who suffer a Traumatic Brain Injury experience, symptoms that stay with them for the rest of their lives. Quite a few TBI sufferers have been known to succumb to depression and take their own lives. This is one more possibility I have to guard against, one more outcome I shall always worry about. If a devoted, enlightened Zen monk could not escape the ravages of depression brought on by a Traumatic Brain Injury, what hope do I have?
And yet I refused to sink into despair. Partly out of kinship with forefathers like Basho and Soen Roshi, I began writing my own short poetry, something that could focus on the beauty of life. But partly because my cognitive functioning was so diminished, so childlike, all I could write were very short, very focused little compositions, often no more than a few words, even shorter than a haiku. My interest in short poetry had already existed before the accident, but now the allure of short verse took on a new urgency. These diminutive poems were something I could still write—and remember. Here was a way of doing something I loved — playing with words — that was still within the grasp of my flawed memory. Here was something I could throw myself into to help alleviate the pain of losing my children, my mother, my home, my own sense of self. Here was something that might stave off future pain, keeping me from sinking beneath the waves of a bathtub in my later years. Writing these poems was a form of therapy, a joyful celebration of what was possible.
To help me remember what I had been thinking when I wrote these short poems, I would write notes to go with them—reflections on life, my life, the human condition, brain injury—and a book-length narrative began to take shape, an odyssey comprised of both poetry and prose, a travelogue recounting my own journey from the hellish depths of despair and hopelessness to the Olympian heights of contentment and peace. It was a story more about healing than about accidents; a story where one could easily substitute other personal hurdles for the words TBI: cancer, divorce, childhood abuse, depression or a thousand other afflictions; a story that would help others searching for meaning in the face of great personal difficulties.
At first, the short poems were a necessary result of my brain injury, but over time, as I healed, I came to see their simplicity as a gift, an art form unto themselves, and I continued to write them. I could have said goodbye to them as vestiges of my brain damage, like therapists to be left behind once my cognitive functioning had improved, but they seemed to have value beyond just a record of my recovery. They were the world’s shortest poems, but they carried a universe of meaning.
In a strange way my disability made me much more aware of the nuance and power of each individual syllable and punctuation mark. I did not need umpteen words to tell a story. I developed a sixth sense for the emotional power of simple word relationships and the coupling between words and the human heart that I had only vaguely glimpsed before my accident. I felt like someone who has lost the use of their legs but finds new strength in their arms for, say, rock climbing. I talked to Dr. Rubino about how I felt and he said, “You’ve only injured certain parts of your brain, and other parts will now become stronger to compensate. You’re like the Stevie Wonder of writers.”
From Passage to Nirvana: A Survivor's Zen Voyage by Lee Carlson, Henry Chapin & Sons, LLC. © Lee Carlson, 2010. Used with permission. www.passagetonirvana.com.