Maniacs Unite!

In one of those early morning synchronistic experiences that the internet is particularly good at generating, this morning I moved from reading headlines at the NYTimes, to clicking on an ad for a book by Greg Mortenson about building schools in Afghanistan and Pakistan, to a link to the Epilepsy Foundation (where Greg will be speaking in San Francisco next week) to an article about Ironman Triathlete Mark Ashby.

It was this last link that brought me up short, turned me around and slammed me right into the wall of my life.

I have epilepsy.

Most people who know me and read this blog regularly are aware of that, though few people realize the way it affects my life. In the 32 years since I had my first seizure I have been on dilantin to control them with only a few seizures over that time "breaking through," and most of the time that due to the fact that I have (for various legitimate and non-legitimate reasons) gone off my medication. For the most part, epilepsy is not a regular, visible, easily identifiable part of who I am. At the same time, as I learn more and more about the condition I have lived with for over thirty years, I am discovering that it has defined in some way nearly every area of my life.

My specific condition is known as Temporal Lobe Epilepsy and features three specific types of seizures, all of which I have experienced at some time or another. Something that I have only discovered since my last seizure (now nearly a year ago) is the fact tht the "milder seizures" that I experience from time to time are really the experience of my particular brand of the disease. The big full blown shake, rattle and roll type of seizures (SGTCS) that I have had approximately 6 times in 30 years occur when the electrical firings of the Temporal Lobe seizures spread to the rest of the brain... at least that's how I understand it. These have only occured when I have been off medication. The others actually happen on a pretty regular basis and I am only just now discovering that everything from my deep attachment to religious experience, to a long standing bi-polar condition (now mostly over... I hope), to some very strange semi-mystical visions, my argumentative nature, big blow up rages and a significant lack of stable self-control, and even my deep and constant need to write, all have at least some connection to this condition. There's even a theoretical term for the whole package, Geschwind syndrome.

Sometimes I feel like one of the characters on Heros, in possesion of some special world-saving power; sometimes I feel like a member of the cast of Freaks, darkly struggling through a nightmare world of oddity and malaise.

Sometimes it's just plain hard.

Often, I don't want to be who I am, do what I do, or think like I think. A LOT of the time I don't want to take my meds because of the way it feels like dilantin dulls my senses and disrupts my thinking. And thirty years of the drug has wreaked havoc on my teeth and gums.

Through all of this... the most effective thing I have experienced for bringing myself around and maintaining some semblance of stability and order, both mentally and physically, is when I was training for and running marathons.

That's where the story of Mark Ashby comes in.

Marks' discipline (both physically and with his attention to his condition) is an example to me of a way I not only need to live, but a way I would like to live. I have spent much of the last 30 years trying to pretend like I don't have this problem. The fact is I do, but a person like Mark shows what's possible regardless of my condition.

In the article about Mark, there's a quote from Steve Prefontaine... "Most people run a race to see who is fastest, I run a race to see who has the most guts." Mark himself puts it this way, "I think human beings are capable of doing far more than what we would or could ever imagine, and a good portion of us don't challenge ourselves as much as we should – physically and mentally. I'm of the opinion that you should never say 'no' to anything unless you try, and if you have the spirit to try, you should have the power to succeed."

This is the motivation for living I find as I start this day this morning.

I see it in Mark Ashby's training and competition in the Ironman.

I see it in my "step-son" Caleb, who I watched grow into a tall, strong, deep competitor who will be competing in the Xterra championship this month in Maui.

I see it in the dedicated and joyous training and vibrant life-affirming race that Jennifer ran two weeks ago at Lake Berryessa.

I see it as hope, as discipline, as challenge and as life.

And it's time for me to get back on the road.