For inspiration, please see Michael Smith’s “Spondyville” website. No one person has done more to raise AS awareness than this man. On his site you will find a collection of witty stories and amusing anecdotes that make all who visit smile. Jokes that tickle our funny bones will be published in the Spondyville comedy cellar….where it will help to spread AS awareness while making someone hurting laugh at the same time.
My Road to a Diagnosis by Michael Tracy Smith (Spenser23)
I was in a stairwell in 30 Rock, (the building, not the sitcom), when I first realized something might be going on with my body that was not just stress and not just a temporary condition. The year was 1984. I had come back to work at NBC in 1980, after taking a few years to pursue an acting career. I had gotten my Equity card, done some regional theater and had toured the country with a self-contained one-man multi-media show sponsored by Pepsi. Still, when a friend called and told me about the position back at WNBC-TV, I went. NBC had always been lucky for me. Whenever I was out of work, I would always go visit friends I knew that still worked there, and somehow, as if by magic, something wonderful employment-wise would always happen a day or two later. Call it a superstition, but it always seemed to work.
I had first started there in 1975 as a page, just as NBC was preparing to debut a new show called Saturday Night Live. I worked on the show for a little over a year, even spending some time working on the SNL crew, pinning microphones on people, and dragging camera cables around. Then I went to work as a Desk Assistant on NBC’s All-News Radio network. That only lasted about a year, but by the time it folded, I had worked my way up to being an Associate Director on the overnight shift, getting to know and work with some of the fabled NBC staff announcers like Wayne Howell, Howard Reig and Bill Wendell. That job got me into the Directors Guild for about six months. When the NBC All-News Radio network shut down, I decided to make one last attempt at an acting career.
I toured the country a second time for Pepsi, driving a Ford Econo-Line van filled with multi-media equipment up and down the Eastern U.S., from Maine to Mississippi, performing in Junior and Senior High Schools and afterwards giving out free cans of Pepsi to students. I had many long hours of driving to get from town to town and it was then that I began to first notice a recurring pain in my lower back. But I wrote it off as a result of the driving. And although I was also beginning to notice that my neck was often stiff, it didn’t interfere with my performances, so I didn’t pay much attention to it. When I got back to my apartment in New York City, I made an appointment with a back specialist. For a starving actor without health insurance, the $250 fee for the doctor appointment made a real impact on my finances, so I was more than a little annoyed when the doctor told me that I should take hot showers and handed me a pamphlet which inferred that what I was experiencing was ‘all in my head.’ I was so mad, that I vowed not to be ripped off like that ever again, which to me, meant not going to another doctor unless I was approaching death. So, for the next few years, I put up with or ignored what was going on with my body. I adapted. I still could take two steps at a time going up stairs, and I could still put in long hours and do a very stress filled job in a very stress filled environment. But there I was that day in the stairwell. My leg muscles were so tense that I was doing what I call, the Frankenstein walk, and in my usual hurry to get an on-air schedule change to Broadcast Operations Control, I had taken a short cut instead of waiting for an elevator. I hit the second step, and I must have, in my hurry, miscalculated, and my foot slipped off the step. This set into motion a series of slow-motion stumbles. Fortunately my reflexes were still good, but, in catching myself and preventing myself from falling, I must have turned a vertebrae that was, unbeknownst to me, beginning to fuse. It made me jump, mostly with surprise, and then a pain unlike any I had ever known before flew up my spinal column. My verbal reaction echoed embarrassingly through the old stairwell. Then, everything seemed okay again. I was a little shaken, but after a moment, I gathered myself, and continued on my way with a new degree of caution. I took only one very careful step at a time, and took the elevator to go back to my office. I didn’t tell anyone what happened, but when my mother urged me to see a rheumatologist near her on Long Island, I agreed to go, (It also helped that as an incentive, she offered to pay half the doctor’s fee.) So, in April 1985, my first rheumatologist, a wonderful man named Dr. Michael Repice, sat me down, asked me a series of questions, I answered “yes” to all of them, and he told me that I had a textbook case of Ankylosing Spondylitis. He did a blood test which confirmed that I had the HLA-B27 marker and that was it. I was officially diagnosed. He put me on what was then the typical starter NSAID, Indocin, and I began my AS journey. In those days, there was no internet to access, and no support group in my area, and I felt all alone in dealing with this disease. I became a member of the Spondylitis Association of America very soon after being diagnosed, and looked forward to the information in their Spondylitis Plus magazine. When the popularity of the internet began to bloom in the mid-nineties, I got a computer and began to seek out others with AS.
On an AOL message board for Spondylitis set up by Tom Contrino, I met a small group of people with AS. As we interacted, I began to write more and more about a town called Spondyville, where everyone had AS so no-one had to feel alone in dealing with this disease. The town mascot, Stiffy the Snowspondy became a popular recurring character, as did Marie Strumpell, the queen of Spondyville society, and the town handyman, “Pop” DeMaupassant. At the time, AOL chat rooms were not open to people not on AOL. Since so many people expressed interest in attending our chats, we decided to move. In 2001, we decided to move to Yahoo, where the Spondyville message board continues to this day. It was also in 2001 that I decided to have some fun creating the Spondyville.com website, which continues to make thousands of Spondys laugh about their disease and hopefully see that having AS is not the end of the road, it’s simply a course adjustment.
Michael Smith
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