[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.
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.