Tuesday, May 31, 2011

Mohican 1997

Most of 1997 had been a blur to me. Most news was lost on me. Timothy McVeigh had recently been sentenced to death for blowing up a Federal Building in Oklahoma City; an action that was called the greatest act of terrorism in American history.

But I largely did not notice.

I kept looking for profound answers to the inequities of the world and I was receiving none.

For the past five months I had struggled to put together one day at a time and at times I was struggling to get through individual moments. And the moments I was living on this Saturday in late June were proving to simply be more of the same. More pain. More worry. More strangeness. I had come to the Mohican Trail 100 Mile Run looking for answers. I was looking for something cathartic, something that would make me understand why there could be so much hurt in the world and how it had been masked from me for so long. I had heard that long mystical trail runs were supposed to be the place where these truths were revealed. But so far I had met no mystics. Instead I met strange, seemingly unathletic, people complaining of insect bites, humidity, and sore feet. I considered myself to be a solid runner and yet I had battled a man all day long who looked like he should have been selling grilled cheese sandwiches at a Grateful Dead concert. And I was being followed around the course by a woman I had never met before. She had a lisp and was repeatedly cautioning me to calm down.

As I ran down the face of the dam toward the covered bridge aid station in the fading twilight at 65 miles I came to the conclusion that no answers would be found among this weirdness. I would have loved to have stopped, grabbed a shower, gone home, and forgotten this whole freak show. But walking through the front door of my home and confronting my troubled family with the news that things got tough and so Daddy quit was absolutely out of the question. I particularly could not convey that message to my son Colin, and so I kept running and kept questioning. Why me God? Why my family? Why would you do something like this to an innocent child? What is it you want from me? Where is the good in this? There were other questions as well.

Most immediately: Why can I not drop this pesky hippie?

Life is a series of memories. Some very clear and some buried. For example I have almost no memory of my senior prom but I can easily recall the first time that I heard of the Mohican Trail 100 Mile Run. It was 1995 and I was trying to complete my first 50 mile race at Owen-Putnam State Forest. I had paid my dues; I had completed more than 20 marathons and a 37 mile trail race by that time. I had been a runner for 18 years and I had trained well for the event. Despite all of this it had been a tough day. The temperature was in the 20’s. My camelback had exploded leaving my sweatpants soaked, and my Power Bars (my only food) had frozen solid. The forest was beautiful but the shortened November days were already beginning to darken and I had not thought to bring a light. There were fewer than forty people in the race and I had not seen another runner for hours. Walking up a hill at approximately the 42 mile mark I suddenly saw smoke. “Oh my God” I thought, “The woods are on fire”. I became immediately despondent. I assumed that it was my duty to leave the course, find a house, and report the fire. I figured that by the time I returned to the course the time cutoff would have passed. I was about to DNF my first fifty mile run. I started to tear up and then to sob. As I cried I noticed the swirls of smoke were in sync with my heavy breaths. The “smoke” I realized, was really just my condensed breaths. “Wow” I thought, “I better just sit down right here and pull my shit together”. I parked on a log and gnawed on a rock solid Power Bar. Eventually another runner came by and asked if I was OK. I admitted that I was actually pretty concerned for myself and asked if he could maybe slow a bit and let me hang with him for safety. He slowed to a walk and nursed me toward the finish line. He asked me where I was from and I told him central Ohio. “Hey!” he said, “That’s Mohican country”. I responded “”What do you mean?” He said “That’s where the Mohican 100 miler is held.” I told him that although I was familiar with Mohican State Park I had never heard of the event. “Well you should run it” he said…

“You will love it”.

And I did love it. And I do love it. And this story is about my first Mohican. Mainly though it’s a story about how I came to love this event. This is my longest post ever. It has been a tough one to write. Several people know part of the story, a writer for the Cleveland Plain Dealer even covered a bit of it once, but I have never told anyone all of it. The events are described here exactly as I remember them. No artistic license is taken. Lying about things like this would be wrong. It has taken me 14 years to begin writing it. It is very personal but I am afraid that if I don’t get this story written I will someday forget elements of it. And that would be wasteful. I thought of dividing this posting into a few installments but each time I do that it seems to confuse people. Instead all parts are included here together. It is written for me and a few who love me, but available to anyone with internet access who cares to know the story.

Part One:
I will always recall the morning of January 5, 1997 for a number of reasons. I was 33 years old, married with two perfectly healthy children. Ultra marathons had revived my running and I was training for my first 100 mile run. I owned a physical therapy practice in the fastest growing town in Ohio. I employed nine physical therapists and three physical therapist assistants and was making plenty of money. I spent my days working with individuals with disabilities and so I assumed that I understood the psychosocial impact of poor health. I believed that my success in life was due to hard work and I believed that opportunities existed equally for all individuals. I felt that lack of success in life came from living wrong; a lack of will power, or a character dysfunction. As far as I was concerned those who were less successful than me simply hadn’t tried as hard as I did.

Trust me, you would have hated me.

For years I viewed the morning of January 5, 1997 as the date of a tragic event. Now I recognize that it was the final time that I could justify the militant ignorance that had shadowed me for my entire life.

On that morning I was in the basement of my home celebrating my daughter Emily’s fifth birthday. The house was crowded with children and littered with bits of streamers, wrapping paper, plates of melting ice cream, and party favors that obeyed a 101 Dalmatians theme.

And then everything changed.

A panicked call came from upstairs that my 2 ½ year old son Colin was choking. I raced up two flights of stairs to find him shaking, unconscious, but breathing; not choking. The grandparents took over the birthday party as my wife Jenny and I accompanied Colin in an ambulance to the hospital where we learned that he had suffered a seizure. It probably wasn’t a big deal, we were told. We learned that seizures were not uncommon in kids and it was likely a singular event.

But it wasn’t.

Another seizure followed, followed by another ambulance ride and another consult. Then more came. Soon the seizures came hours, rather than days, apart. Still we were reassured that seizure disorders were quite treatable with medication and so there was no need to panic.

But treatment proved ineffective.

Over the next several weeks the seizures increased in frequency. At first there were dozens of seizures per day. Then the number topped 100. Then they became so frequent that they really could not be counted; only estimated. The closest estimate was 300-500 seizures per day. Often times Colin would have more than one seizure in a single minute. And even more problematic: there were five different seizure types. Some would cause a spasmodic episode; a minute or two of full body shaking. Others involved staring into space. Some involved a simple but disturbing head drop. The scariest were the “drop attacks” where Colin would suddenly throw his head up, body into full extension, and drop to the floor with no notice whatsoever. Despite the helmet he was required to wear, supervision needed to be constant. It was dangerous for him to walk across a room unaccompanied. The problem with multiple seizure types, we were told, was that a medication used to treat one type might increase another type. Colin was placed on a massive cocktail of seizure medications that impacted his ability to communicate. The doctors admitted that the constant adjustments to the dosages were guesses.

X-rays, MRI’s, and CAT Scans were all negative. We learned that most types of epilepsy were idiopathic; the cause unknown. We were told early on that it was not necessary to call for an ambulance any more unless a seizure lasted longer than four minutes. We were on our own.

Colin’s face and body became bruised and he had an enormous bump on the back of his head from the falls that accompanied the drop attacks. I saw an electroencephalogram (EEG) that was taken at the Cleveland Clinic and it offered no patterns at all. It looked as if a small child had taken a pen and scribbled randomly and forcefully on the paper. The diagnosis brought the worst possible news. This was Lennox –Gastaut Syndrome; the worst type of seizure disorder. It was considered to be incurable and, largely, untreatable. We were told that if Colin lived to see his fourth birthday the risk of death from that point on would be reduced…we would have to wait and see.

Friends disappeared. Colin suddenly had few playmates and, after the initial flurry of casseroles that appeared at our door, most of our circle of friends vanished without comment. I received a telephone call one night from a friend who invited Jenny and me to a party at his home. I hadn’t spoken to him in a while and he was unaware of our situation and so I updated him. After a long uncomfortable pause his only response was “Well, stop by if you can”. Jenny predicted we would never hear from him again. And we didn’t.

In the midst of all of this my mother died. I wasn’t able to make it to the first of two sets of calling hours because Colin was being released from a hospital stay, but at the second set I was approached by a woman I knew only peripherally through a family member. She explained that she sold life insurance and could, if I acted quickly, “slip the paperwork for Colin in before the medical records hit the system” at which time he would be denied. That way we could get some money if he died. I said no thanks. To this day I consider it, given the setting and the circumstances, to have been the most callous comment I have ever heard. But she wasn’t the last opportunist to visit us. I was approached by an individual who sold vitamins from her home. Others demanded that we see a faith healer and another told me that the bible states that “The sins of the father are visited upon his children”; clearly, she thought, this must be justice administered due to my past transgressions.

Being angry was easy. And so I was. It was hard to go five minutes without internally rolling my eyes at someone who complained about the amount of time they spent driving their kid to select soccer practice, or complaining that their kid’s teacher was less accessible due to the amount of time that was being spent on the special needs children in the classroom. Despite all of this I understood, even then, that the hatred and laziness that I was experiencing was really ignorance. My family now lived in a formerly  secret world, separated like ghosts from the rest of society by a thin layer of lace that should have been so easy for everyone to see, and so easy for everyone to accommodate…and yet our situation remained completely and utterly invisible, or at least misunderstood.

Then again, who could I really blame for these attitudes and lack of caring? I had spent years making money treating individuals with health problems. I had been in their homes. I had looked directly into their eyes and never bothered to adopt any of their pain. The worst sin I committed was in convincing myself that I understood their pain. The evil lay in my ability to use my credentials as a health care professional to offer an “expert opinion” on anything from taxes to education to socialized health care plans. Now I was forced to realize that a secret world exists, and has always existed, in which those who need to be served often have no voice. The reason they have no voice is because they are trying to survive. They are trying to make it to the next moment. They won’t write letters to their congressional representatives or confront a school board or sue an insurance company because their time, energy, and money are spoken for. They rely upon others to do this for them. They had, for years, relied partially upon me. And I let them down because I didn’t care. And the kindest thing I can say about myself now is that I didn’t care because I was ignorant. Slowly it dawned upon me that if I couldn’t see a world that I was living in and making a living with…if I hadn’t understood the world of the disabled, then how many more things did I simply not understand?

I was, and am, a white, anglo saxon, protestant, middle aged, middle class, heterosexual male. My group rules the roost. I had never experienced prejudice. I had never experienced hatred. I had never been marginalized and yet I was given free reign to make decisions for those who were. What else did I not understand? I didn’t know what it is to be homeless. I didn’t know what it is to be unemployed for a long period. I didn’t know what it is to be a person of color. I didn’t know what it is to be an illegal immigrant. I didn’t know what it is to be homosexual. Although there was no spare money in my youth I did not have to escape the poverty culture. I imagine now that all marginalized groups live under similar veils of lace that should be visible, and fragile, but instead serve as prisons. I had never been discriminated against or hated but I now had a front row seat to observe those who were.

My daughter Emily…was a champion. I won’t tell her story because I cannot know what it was/is. Some day she may choose to tell it herself but I will tell you that I saw a five year old girl living in a world of struggle and bias and hatred who handled the situation precisely the way Jesus would want us to handle it. I will always believe that Emily understood what was happening. The response that I believe I saw was one of acceptance. She was a perfect friend to her brother. She was loving and supportive. Surely her life was impacted in ways that I will not ever know. Our attempts to provide normalcy must have been minimally successful at best. But what I saw was grace and strength beyond what a five year old should ever have to offer. She was the only person that I saw in our entire world who saw through the lace prison and brushed it aside... an option that was available but ignored by all of us…except her.

The world needs more five year old girls.

I also will not endeavor to tell Jenny’s story. If I do not know what it is to be marginalized, and if I do not know what it is to be epileptic, and if I do not know what it is to be hated, and if I do not know what it is to be a five year old girl, then I also do not know what it is/was to be Jenny. I will tell you how things seemed to me, however. Jenny and I handled things differently, she reached out for support and I withdrew from the world. In hindsight I think that her approach was the healthier path.

As a young man I thought there should be some way for me to protect my family, but I was powerless. I would awaken each morning and hope for an instant that this was a bad dream and then realize that it wasn’t. Sometimes I was awakened by the sound of Colin having a seizure. Jenny or I would rush to him out of reflex but arrived to find that we were useless. We weren’t invited into his world. We couldn’t understand it any more than anyone else could understand ours. I remember feeling very alone. I would speak to people about things on occasion but there were never any answers, even from those who people in my life who had ALWAYS provided answers.

Because waking up was so unpleasant I, more or less, stopped sleeping. Running stopped completely. I watched basketball far into each night. I became an expert on the sport. I could tell you the probable outcome of nearly any matchup, especially the midnight matchups between west coast teams, no matter how obscure the teams might be. I could tell you, for example, Why St. Mary’s should easily have been able to defeat New Mexico State. I was a servant to my job and a servant to my family. I was accepting of the former responsibility and sadly proud of the latter. I was otherwise of no use to the world. I never bothered to become alcoholic because I never knew when service would call. Instead, after everyone was in bed, I watched basketball, or infomercials, or old war movies, or whatever useless shit happened to be on. It didn’t matter. Any sound in my brain other than my own thoughts was welcome.

One night someone I loved very much stood between me and my TV and asked

“Why don’t you run anymore?”

I answered honestly. “Running doesn’t matter.”

“Well then what about Mohican?” She inquired.” Are you giving up on that too?”

“Yes I am” I said. “There is no chance on earth that I can run 100 miles.”

“Ok, that’s fine” she replied “But I think that if you can’t do it you should drop out on the trail in June rather than on the couch in February.”

If this was Hollywood the theme to Rocky would have blared forth and I would have done a bunch of pushups or something. But this was life and so I went out into the rain and ran myself to exhaustion in 17 minutes. Then I walked home.

And then I went to bed.

Part Two:
The training runs for Mohican 1997 were completely unpredictable, and inadequate, and very nearly perfect. I would slip out of the house at about 11:00pm on most nights and run for a while. Often I ran for 45 minutes but sometimes I ran for hours. Looking back I realize that absolutely nothing about the runs ever bothered me or caused me to alter their being. I could do a 20 mile run in a freezing rain or a 15 minute run on a temperate night. It simply didn’t matter. I knew that my usefulness to the family was limited at this time of night and so I ran without a schedule. If I got tired I walked, or sat down. I love the running scenes in Forest Gump. I love that he ran when he felt like running, ate when he was hungry, and stopped when he was tired. That was exactly, precisely, how I recall my runs in the spring of 1997. They were always done alone and always in the middle of the night. I knew the location of every soda machine and drinking fountain in Delaware County. I found that Saturday nights were especially freeing. At first I simply carried a few dollars and if I became thirsty I would swing back into town and wait in line at the Delco Drive- Thru, between cars filled with drunks, and buy a cherry Coke…then I’d run more and maybe come back again later…or maybe I wouldn’t. After a while I learned that if I preplanned a route I could drive it in advance and throw a can of pop out the window every four miles or so. I’d then run from can to can, sometimes all night long.

I had a Walkman and listened to 70’s music. I realized that the lyrics of Barry White’s “My First, My Last, My Everything” could be a prayer. And so I would sing them aloud to God and then ask for a miracle. The Hale-Bopp comet was in the sky and on clear evenings I could see it standing starkly on the horizon near a tree line or near the darkened silhouette of a grain silo and the beauty would almost overcome me. And then I would become angry and ask God, if he was capable of such majesty, why he couldn’t (wouldn’t?) save my son? Why did he ignore me? I pledged my life to him. I accepted him as my savior. And I complained angrily to him. I waited for a response but each night I would return home and realize that my respite from the world changed no one for the better.

I didn’t run this way out innocence, or naivety. I could riff on about Lydiard and fartlek and intervals and lactate thresholds for hours if needed…but I couldn’t have been bothered by any of that. I wasn’t even particularly worried about finishing Mohican. I figured that that wouldn’t happen. I once drove to Mohican and ran around on the roads for five hours, then realized that all this run was proving was that I had no idea what I was doing. I climbed in my car and drove back home.

One morning I was eating breakfast with Colin. He was seated in a high chair that he had formerly outgrown and wearing his helmet, a horrid brown thing that I hated for its ugliness and symbolism, but loved because it protected him the way I wanted to. Colin was eating a bowl of Cheerios. He would stab at the bowl and after several attempts he would get a few on his spoon and, time after time, just as he was getting the cereal to his mouth he would have a head drop seizure and lose them again. It was incredibly painful to watch. No matter how many times I would try to help him he INSISTED on doing it himself. It occurred to me that Colin was strong, and patient, and accepting, both at this breakfast and throughout his days. I realized that I was the only person at that breakfast table who was unhappy. I decided that I needed to be more like Colin. I needed to be patient, and strong, and determined.

Part Three:
The sun set precisely as I arrived at the covered bridge, the 65 mile point at Mohican fourteen years ago. I flopped into a lawn chair and started fumbling through my drop bag for my headlamp. It was a massive thing that required 3 “D” batteries that were inserted into a case that rode on the back of my head counterbalancing a single incandescent bulb on the front. It had cost me 45 dollars and I was proud of it. I also had my Walkman strapped to a waist pack that I filled with spare batteries, audio cassette tapes, snickers bars, and homemade salt pills, made by emptying the contents of B-12 capsules and refilling them with table salt. I was completely and utterly exhausted from trying to break the hippie. I noticed that he was slouched low in a lawn chair 25 feet away and was being attended to by a young girl. I recall thinking that this was possibly the toughest character I had ever encountered in my life and hoped that I had at least given him some sort of beat-down since I had likely blown my own race trying to drop him. He was laughing, smiling, and putting on fresh shoes for the night. He seemed perfectly fine…and perfectly at peace. I would have loved to have changed into fresh shoes myself but I was afraid to remove my current pair. Several hours before I had examined my feet and found that my feet had swollen and my wet road shoes had caused blisters that covered the entire underside of both feet. The blisters had since popped and I simply didn’t want to know how bad they had gotten. Instead I took a knife and sliced the front of the toe boxes so that my feet had a bit more room. The lady with the lisp approached me for the third time in the last 20 miles and announced. “You are doing great! Take care of yourself and go easy…you are intenth”. The two previous warnings had an effect on me and I was touched by the pure sweetness of this kind soul who had, for some reason, taken an interest in me. But this time I wasn’t listening. I remember thinking that I can be intense if I want to be intense. I wanted to be calm for her but things were getting desperate.

Throughout the day I looked around me and I saw people laughing and cheering and being joyful. I thought of Colin and how I really didn’t care to be a part of any society he could not belong to. For months I felt guilt about feeling any pleasure. I had grown to hate any part of the world where I imagined that he might not be welcome and felt resentment toward residents of those exclusive places. And as I passed the 80th mile and headed down a very long asphalt hill I felt guilt about even being on these very roads.

My feet painfully slapped the pavement sending a shooting pain with each step. My tired mind did the math and realized that I had 30,000 more shooting pains left before the finish line. The day had been miserably hot and I was sunburned, and chaffed in unmentionable places. Dead bugs were held to my body by the congealed Vaseline I had used to rub myself down. I ran a hand through my hair and the dried salt collapsed into my swollen fingers. It occurred to me that entering this race was likely a mistake. As painful as the downhill was on my feet I immediately regretted seeing it go as I took a hard right turn and began to climb a very steep gravel hill. I was lost in a world of misery. I wished I was at home and able to walk down our air conditioned hallway. I wanted to enter Colin’s room and give him a kiss on his cheek and sit for a while and listen to him breathe. Instead I was here running. And as I took several more painful steps to the top of the hill it occurred to me that I was likely running away. With each painful foot slap I asked God Why? Slap. Why? Slap. Why? Slap. Why? Slap. Why? Slap.

And then everything changed.

I hit the top of the climb and the most delightfully cool breeze hit me. Good heavens! I will tell you now that I can still remember that breeze to this day. It felt wonderful. And I looked out across the farmland and I saw millions of fireflies in the trees on the edges of the field. The sky held a trillion stars and the Milky Way was visible despite the crescent moon in the sky. In the distance a single light burned in a farmhouse. It was, and still is, the most beautiful scene I have ever witnessed. Once again I asked God why, if he could create such beauty, he could not heal my son. I asked him again…why?

And then God spoke to me. I’m not being metaphorical. I am being literal. I have had hallucinations at Mohican since that night. I once saw a gnome fishing along a river bank for instance…he was clear as day and I witnessed him for several seconds. I also saw a couple having sex in the middle of the trail in the middle of a mud puddle in the middle of the night once. Both of these situations were nonsensical and immediately evident to me that they were hallucinations. They were also wildly out of context. But God’s answer to me was real. I know it was real because of my faith but I also know it was real because the answer was so perfect in context and so unexpected in its nature. Over the previous months I had imagined that when God eventually answered me he would tell me that he was going to cure Colin, or that he held a magnificent plan of which Colin was a part. Instead he told me what he told me…and it was perfect. And it might upset poets or mystics or bible bangers everywhere but I’m not going to misquote God. I heard his answer.

God told me that it was none of my business.

I was more than a bit taken aback. How could it be none of my business? This had destroyed lives! Then God told me in a loving but firm voice that I was his servant. He reminded me that I had agreed to serve him and to do his will, and that my role was not to know his plan or to help him with his plan. He told me that my job was to raise Colin. My job was to care for my family and to serve him. Then he told me that he loved Colin and that he loved me and that he is with us.

And that was how it went. Some reading this might be doubtful and that’s alright with me. It really is.

Since God was present he might have healed my feet or my rash. But he didn’t. I forgot to ask and maybe it didn’t occur to him to offer. I don’t know. And that’s alright with me also. It really is. I progressed toward the finish line by walking to one telephone pole and then aiming for the next one.

Telephone poles have become symbolic for me. As I made my way toward the finish line I realized that life has good patches and bad patches and my job is to keep moving…even if one telephone pole at a time is all I have in me.

It also occurred to me that, just as I had missed the hidden world of the disabled I had also managed to miss an awful lot of beauty in the world. Its okay to love beauty, I realized. And its okay to celebrate the good things. In fact it might be a sin to fail to celebrate when we are given a reason to do so.

After the race my family did not greet me as a returning hero. To them it was just another day. Dad was home and that was good. But everything really was different because this time I also noticed that it was good that I was home. Mohican had, as predicted, changed none of our problems but it completely changed how I saw them.

I also learned that things don’t always get worse. As the finish line drew near I was joined by two young women who thought I looked lonely and jogged along with me. They told me that I was in 9th place. The woman with the lisp, dressed head to toe in purple, was Colleen Theusch. And she did not have a lisp after all. She had not been telling me that I was intense; she had been telling me that I was in tenth place. Colleen is the heart and soul of Mohican and has become one of the best friends I have ever had. There will be a big loving blog post about her soon. I love her. She is amazing and the post will not do her justice. But I’m going to write it anyway.

The hippie turned out to have a name as well. Roy Heger has become one of the best known and most decorated ultra runners anywhere. He is also my friend. He called me a couple of weeks ago from the National Mall in Washington D.C. where he was loitering following his twelfth finish at the Massanutten 100 Mile Run. He told me he was smoking a cigar in a public place “before they decide to make this activity illegal too”. Roy is one of the good guys. I was wrong about him though…He is only the second toughest character I ever met.

A couple years after Mohican ‘97 Colin’s seizures slowed, and then they eventually stopped. He was the only patient in the history of the Cleveland Clinic with Lennox-Gastaut syndrome to ever stop having seizures. He has been almost 100 percent seizure free since that time.

His helmet was used as a toy for a while thereafter. It lingered around the house and he and his brother Caleb (born in 2000) used to pretend it was a space helmet.

He is now 17 years old and has a high functioning type of autism. He has five Special Olympics State Championships in 2 separate sports and I cannot, under any circumstances, dribble a basketball past him. Nor can I outshoot him. Or outswim him. Or hang with him in any activity that even remotely includes electronics. He will graduate from High school in 2013. He is tall and he is strong and he is handsome.

After the seizures stopped they performed an EEG at the Cleveland Clinic. His Doctor, the world’s foremost authority on childhood epilepsy, the woman who had (literally) written the go-to book on the subject, looked at the electroencephalogram report, peered over her glasses at me and said “Its normal”. How did this happen? I asked. But I knew the answer before she said it.

“God touched him.”