Friday, June 7, 2013

Ten Years with Wilson

[WARNING] The following contains some really heartfelt reflection.

This month marks a major anniversary in my life. It has been ten years since I was diagnosed with Wilson's disease. Never heard of it? I'm not surprised. Wilson's is very rare, only affecting about one out of every 30,000 to 100,000 people depending on the study. So, in the city of Seattle, where I live, there should only be between six and 21 people affected or between 3,000 and 11,000 people in the entire United States.

So, why am I posting about this on a gaming blog? We'll get to that, but first a bit of background.


Wilson's is a genetic liver disorder that prevents the body from processing copper found in the food we eat and the water we drink. Trust me, it's everywhere. Though it is a liver disorder, it often manifests in other ways. For me, it was as hand tremors caused by copper deposits in my brain. I was very lucky, as it turns out. My tremor started in my early twenties and I was diagnosed before my liver sustained permanent damage. As such, my condition was highly treatable. Unless something weird happens, I will lead a long and normal life.

Getting here, however, was not so simple. When I started treatment, it stirred up all the stored copper in my body, which made the symptoms worse before they got better. In my case, I lost much of the function of my hands for about two years (though the recovery was so gradual it's hard to nail an end date.) Both my hands, and occasionally my legs shook all the time. I couldn't write or draw. I could barely type. If I gave you a hug, I couldn't help but hump your leg. Pretty much any basic daily function was a challenge. Heck, I even needed to sleep with my hands wedged under my pillow to avoid listening to the sound of one hand clapping all night.

As a creative individual, losing the use of my hands was a major blow. I drew extensively as a kid to express myself, relieve stress and conceptualize my creative ideas. That was all out the door. Even typing was difficult, preventing creative writing as well. I could play video games… sort of… as long as they didn't get my adrenaline going too much. Then the controller would become hard to handle.

Improvement was painfully slow. It took me until early 2005, before I felt well enough to start getting my life back on track. I went back to grad school and started occupational therapy. I set unique personal goals for myself, one of them was to be able to fill out a karaoke slip on my own. Then to eat with chopsticks. By the end of grad school, my condition was significantly improved, and today my tremor is barely noticeable unless I am tired, excited, or upset.

That Brings us to the Blog

Even after reaching a near full physical recovery, I still bore the scars on my creative self. My inspiration had been tamped down for so long that I struggled to open a sketchbook. I might scribble one or two quick things, but nothing bigger popped to mind. I felt stagnant.

That's a big part of why I turned to tabletop gaming. It gave me a venue for my creativity with built in prompts (game books) and a built in support structure (game groups). I finally had a reason and a focus for my right brain. It worked. I used gaming to tell stories. To create worlds, to get back into visual art. Starting this blog was yet another step on the road to creative recovery. It gave me a place to share that expression with a wider audience.

Reflecting back on the past ten years, I really see just how far I've come from one of the lowest points in my life. I now have a second degree. I have an awesome job. I am marrying a wonderful woman next month. Through it all, however, I have been supported by my wonderful family and friends, and want to recognize the help they gave me.

  • My family who was always there for me.
  • Sean my roommate, and his family, especially his father who called in favors with old Air Force buddies to get me in front of competent doctors.
  • Jen and Sully, who drove me to the hospital throughout my early diagnosis and treatment.
  • Jon, James, Sarah, Keith and all the members of the Los Angeles "Committee" who helped me approach the toughest times with a sense of humor.
  • Tawnya, Bridget and the new friends I made after moving back to Seattle who helped me transition from the weird shakey guy to a normal functioning member of society.
  • Doug, who helped convince me to get out on my own again.
  • All of my friends, really, who have continued to support my creative recovery, often acting as companions and/or guinea pigs in the same.
  • And, of course, my wonderful fiancee who is always right there supporting my half-baked ideas, even if they make a mess of the house, or just make her roll her eyes and say, "uh-huh…"

I couldn't have made it to where I am today without the help of my wonderful support network. This blog is for them.


  1. Thank you for sharing--it got me to look up more about Wilson's Disease and how copper is in just about everything.

    And thank God for modern medicine being able to diagnose and treat the condition.

    May your next ten years be Wilson's free.

    1. Thanks for the well-wishes. Unfortunately, because it is genetic, I'll never truly be Wilson's free, but I can definitely aim for ten or a lifetime more years without symptoms!

  2. Hmm... now, I'm wondering if my uncle has that. He's had a tremor in his hands for as long as I've known him.

    1. Unless he's been treated for Wilson's already, it's unlikely. Anyone who goes long enough to be the uncle of an adult individual would likely have needed a liver transplant to survive without treatment. There are lots of different things that can cause tremor. It took doctors over a year to find the correct thing that was causing mine. If he's otherwise in good health, it may just be what's called "essential tremor" which means his hands shake, just because.

  3. So proud of you, babe :) <3 <3 <3 Your creativity inspires me!

  4. You've come such a long way from the guy I met at the Canterbury over 8 years ago. I'm proud to have been around to watch you reclaim yourself, heal, and find happiness. Now all I gotta do is teach you how to sew patches on things. =)


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