Monday, January 23, 2012
By the time I reached 18 I was so fed up with doctors I stopped going. I remember quite clearly seeing my neurologist. He was eating a danish while “examining me” which amounted to watching me walk back and forth, touch my finger to my nose, etc. You know. At any rate, I thought that I couldn’t be too bad off if he could be enjoying a pastry during the exam so I stopped going. My parents’ were mortified but since I was 18, they really couldn’t force me.
Then, when I was 26, I was waiting for a friend to pick me up as we were going on vacation, and while I waited, I read an article in Newsweek about a new play that was opening called “The Elephant Man” (I wrote this already but I need to stay on top of the timeline). It was about a man with neurofibromatosis. I remember having two clear, simultaneous thoughts: “Why does that sound familiar” and “OMG I have it!” I started pacing, panicking. Years later, it was revealed he actually had Proteus Syndrome, which is similar….someone in the Seattle Chapter of NF had it changed in the Library of Congress but the myth persists.
After my vacation, I joined the local (Minneapolis, then) chapter and asked my parents to come with me. I thought it was a support group, but all they did was sit around and tell war stories, crying and carrying on. At that point, the tumors were not detectable on me. One woman looked at me with disdain and said “I looked like you at your age but look at me now” Her face was covered with tumors. I thought, nice thing to say, lady. I never went back. My parents were equally disheartened. I was at a loss, only saw doctors when I needed to; no “check-ups”.
When I was 22 (this is a tad out of order but I'm following where my brain takes me), I backpacked around the country for three months. On this pilgrimage, I saw many places but fell in love with the Pacific Northwest. I was lucky enough to do the traveling without medical complications so at the time, needed no pain medications. I hitchhiked most of the way, even though I had a bus pass. The busses didn’t always go when and where I wanted to and in 1975, hitchhiking was still fairly safe. I would not recommend it now, and my parents would have had a fit if they had known.
I stayed in youth hostels, got high, met incredible people along the way and tried to keep a journal, though that didn’t last long. For some reason though, the sadness that has always haunted me my entire life would not completely let go. I cried a lot, tried to figure out what I wanted to do with my life, etc. I happened to meet some people who were part of a group led by that now famous couple who claimed a spaceship was coming in on a comet and would whisk them away. They were in the news again about 10 years ago, having killed themselves along with several others. I had been tempted to join them back then! Strange, thinking back on it.
But I had some fun times…I use to sneak in and out of the hostels at night, past the “lights out” time…a very cute boy by the name of Bobby (whom all the girls had a crush on) would let me back in at night. One night, after crawling into my sleeping bag on the top bunk of the bunk bed, I noticed a little circle of light on the ceiling next to me. I looked over the top of the patrician that separated the bunks (it was an old Navy base on Victoria Island) and saw a candle burning and the woman in bed sound asleep. I slept in the buff back then and thought hard about what to do. I mean, the place could have burned down! Finally, I crawled out of my bed, walked around the corner, climbed the short ladder to her bed, and tried to blow out the flame. Then I got a mental image of myself standing there stark naked blowing near this woman’s face.
And as much as I loved her, I sometimes feel I have all her difficult qualities and none of the loving, heart of gold qualities. Ah, life.
At any rate, I was now 33…I’d done so many self improvement things (including years of the est training programs), read so many books on the subject and participated in so many “alternative” explorations I was dizzy. And no closer to enlightenment then I was when I popped into the world, full of tumors yet to appear.
Things began to get worse for me physically shortly after my move. I was 36 when I had my first in a very long and seemingly endless series of MRI’s over the years. The first neurologist in Seattle asked permission to show my MRI at a convention, without using my name, of course. One of the doctors there asked if this person (me) was in a nursing home. That’s how many tumors they saw. And it was over 22 years ago, so there are many more. I collect them. Too bad I can’t sell the older ones; they’d be worth a fortune by now!
That’s it for now….
Posted by Sherri at 1:29 PM