Over twenty years have passed since I was first diagnosed with AS. When I reflect on those years they are bittersweet. I wonder what I might have been if I wasn't diseased but I also realize I might not have valued my life or appreciated how precious time is (and, hopefully, treated those within it accordingly).
How did I get this disease? I'm not sure. No one in my family has it. When I was five I suffered a bout with meningitis. I remember it vividly -- being confined to a hospital bed and no one visiting me except my parents wearing a gown and mouth covering (fearing that I was contagious). The only person to defy the doctors by not dressing up in precautionary clothing was a nun who would come into my room every night to hug and rock me to sleep. I suppose that accounts for my appreciation for contemplative religious people -- those silent monks, nuns and other clergy who don't proselytize but just live a life struggling to discover god.
As a result of my earlier struggles I became active in sports. I grew -- mushrooming to 6' 3" by the tenth grade. By my senior year of high school I had offers to continue as a student/athlete. So off I went to Kansas to play football after signing a national letter of intent. The winter of my sophmore year I had a case of pneumonia that I did not treat. I was in really good shape -- at 6' 4" and 245 lbs. I could bench around four hundred lbs. and I ran the hundred meter in 11 secs. I took pride in my physical being and the prospect of playing football indefinitely. By spring drills I noticed that I was tired more. As a linebacker it is important to have lateral and backstepping speed. I noticed that I was having difficulty. In out Spring scrimmage I broke the tibia in my right leg and that seems to have been the impetus for the AS. I came home and spent the summer attempting to recover but had a difficult time. I was in constant pain from the fracture and a pain in the lower part of my spine. I went to a general practioner who prescribed a relaxant. It didn't work. Then in August of 1973 I woke up and could not walk. I was in such excruciating pain that I literally crawled. I remember my mother taking me to the hospital. I had blood work and a series of x-rays done. Then I was introduced to an orthopedic surgeon who immediately hospitalized me -- I was told my sed rate was incredibly high and they needed to get the inflammation under control. I spent a month in the hospital learning to live with this new physical menace in my life. I spent the next five years fooling myself by thinking this was only temporary.
When life deals a blow of such magnitude to your youth it takes a long time to recover. Friends were supportive at first but as the disease progressed the aging process that I came to represent was too much of a challenge for many of them. I became distraught. I finished school and spent time in the financial world of Wall St. The pressure of people and work made the pain more frequent. I was consumed by emotional and physical pain. After a long time girlfriend left I went into a tailspin. I drank heavily and ignored anyone who offered assistance. I was angry! After about a year of nonsensical, narcissistic behavior I had one of those existential moments of nothingness (when they say you hit rock bottom). I sensed no present or future meaning in my life. I didn't have the guts to end it so I decided I needed to look for an alternative. The alternative came as a result of a friend having a religious awakening. While I could not share the prejudicial aspects of his new found faith (I'm more ecumenical) and the certitude that comes at the expense of one's natural curiosity, I decided to make a monastic retreat (much to his chagrin). Initially it was just a weekend. But I found something there that I hadn't discovered elsewhere -- myself. We anesthetize ourselves with constant distractions. Music, television, our need for a constant drone or someone to talk to or a martini or the silk suit or the Audi or . . . we are constantly running away from ourselves and technology is helping. Monasticism provided an environment free of distraction but full of simplicity. Even in church we need constant affirmation -- we either create it or sustain it through a self-imposed piety or we accommodate it to our needs or desires (exactly what the robber barons did at the end of the nineteenth -- Gospel of Wealth). The monks are not the least bit interested in conversion but realize the healing power of silence.
Secondly, its not our fault as it is a culture that teaches unfettered self-interest. We are born into a paradox -- to compete and to conform. How do we live with such a mixed message? Its almost easier for those groups on the outer fringes who have no socio-economic standing to survive (however, I'm very egalitarian minded). I discovered that without the expectation to conform or compete there is true freedom. No need to 'keep up with the Jones' or wear a jean logo on your butt or go along with the locker room humor during an executive meeting. Nor did I have to hang on to what I thought was valuable -- my belief system (how I had become indoctrinated by our socio-political culture). Ironically I realized that the pain was freeing me; the disease was allowing me to "drop out" in the cultural sense but in the spiritual or humanisitic sense I was "tuning in" more than ever.
I spent three years in the monastery discovering -- for better or worse -- who I was. There were no epiphanies (except those provided by nature), no revelations, no complete assurrances but a wonderful sense of identity with all that is (in the Parmenidean sense). My fears abated as I learnt to cope with grief and hope on a daily basis. The true journey of self-exploration began. No longer able to rely on my physical being I sought to celebrate the cerebral.
I went back to graduate school became a historian with specialities in American constitutional law and U.S. cultural/intellectual history. I spent a short stint working for our district's congressional person. That's when I met my wife, Simone. My Athenea, direct from Olympus via Paris and Little Neck, Queens. I'll never forget one of our first dates -- the National Gallery. There was a Dali exhibit and I was anxious to show off my knowledge of surrealism. We were walking across the mall towards the National Gallery when she noticed I was in pain. Without asking what was wrong she intuitively knew and suggested we do something a bit less strenuous than standing all day. My desire to boast was greater than her empathy. But in her gentle way she explained to me that her grandfather was one of the sculptor's of the Dali jewels and so she was all to familiar with Salvador Dali. After eating crow and while nursing a sore hip/spine we wound up drinking beer at Clyde's in Georgetown. Eighteen years later I still drink beer with my confidante, friend and lover (and she still has this uncanny ability to sense my difficulties which she calls love).
Just after I met Simone I accidentially fell on my lower back. The next morning I did not get up. For a week I laid on a couch in Simone's apartment unable to move. When I was finally able to get to an orthopedic he verified a fracture. At the time, mid-1980s, he mentioned that due to the AS I might consider a surgery to prevent further deterioration and deformity. I balked.
The procedure called for an anterior approach. I spent ten years yielding to one excuse after another until Dr. Edward Simmons Jr., of Buffalo said that I was treading on very thin ice. The pain had become intolerable and my spinal cord compromised. As a result of recurring spinal fractures I developed scoliosis, lordosis, kyphosis, stenosis, etc. (seemingly every 'osis possible). I was sleeping for two hour periods on my side (I still can't sleep on my back). As the doctor explained -- my spine had fused but because of the compression fractures I had created one joint in the middle of my back which bowed out like a stick with pressure from both ends. The spasms became uncontrollable. So, in August of 1996 I went into Buffalo General hospital for a resection/osteotomy of the lumbar and a fusion of the t-11, t-12 area where the fractures had worn away the vertebrae. It was a twelve hour procedure with instrumentation (harrington rods and screws) running both sides of my spine from t-6 to s-1. I was bent quite severely before the surgery so having my spine reconstructed meant knew sensations and learning to walk again. I spent six weeks in the hospital and an additional three weeks at home (I was brought home in an ambulance and assisted with in-home healthcare nurses, physical therapists and physicians) before I began the arduous recovery of learning to walk again. Initially I just stood at the side of my hospital bed clinging to the rails while the therapist counted to thirty. The recovery took two years. I look back on those events and wonder how I survived: The day my blood pressure dropped so low they had to issue four units of blood. The days I spent helplessly on my back in a body cast. The humility of others touching me. It would be silly to marvel at my courage because I realize that it was my lack of fear thanks to a contemplative lifestyle and my wife and son. I'm preparing for another surgery -- hip replacements that I'm told is much easier than the osteotomy. I know the experience awaits a new lesson. While I'm not anxious to learn it I hope I'll be ever so alert.
There is so much I could say but I don't want to prevent someone else from sharing their message. I suppose the greatest gift we can receive is to recognize that we all suffer. I do not believe that any of us are singled out for a pain worse than we can endure. I also believe we possess the grace to grow as a result of that pain. The pain is meant to instruct. I just hope I can use the AS to become in Henri Nouwen's words -- a wounded healer.
I wish you peace.