Welcome to our virtual community! Start by browsing through the personal stories featured here.
We have organized these stories into two categories: Your Stories -- stories sent to us at the Spondylitis Association of America -- and selections from The Faces of Ankylosing Spondylitis project.
We’d love your story as well! Send it to us at email@example.com
By Michael Tracy Smith
Friday, January 01, 2016
My name is Michael Tracy Smith (a.k.a. Spenser23) I am a Face of AS.
This is my story.
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 applied and got it.
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, which was, after all, the reason I had moved back to New York City in the first place.
In no time, I was back touring the country for Pepsi, driving a 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 $250.00 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 literally at death’s door. So, for the next few years, I put up with, or ignored what was going on with my body. I adapted. After all, 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 then, there I was that day in the stairwell.
My leg muscles were so tense that day that I was doing what I called, ‘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 in my hurry, I must have 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. 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.
Of course, in those days, there was no internet to access, the SAA had just begun out in California and there was no support group in my area. I felt all alone in dealing with this disease. And I was all alone. I knew that the stress of working in Television was aggravating my AS, and that AS would force me to give up my dream of become a working actor in NYC; how many parts are there for 34-year-old arthritic people? So I left NBC, found a less stressful job and in my spare time, started to write plays and poetry. I’ve had a number of my plays produced both in regional theaters and off-off Broadway. By 1989, I was totally fused, neck and spine. I would later have my right hip and knee replaced (1996 and 1997 respectively) and would lose the sight in my right eye due to glaucoma brought on by Prednisone around 2005.
Early on, I became a member of the Spondylitis Association of America, 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. Some of them are still friends to this day and some of you may even know them on Facebook. People like Tom Contrino, Tyler Hyder, Rick Day and Laura Wiley, to name just a few.
As we interacted, I began to write more and more about a little town called ‘Spondyville,’ where everyone had AS and therefore, no-one had to feel alone in dealing with this disease. The town’s mascot, Stiffy the Snowspondy became a popular recurring character, as did Marie Strumpell, the queen of Spondyville society, and the town handyman, Throckmorton “Pops” DeMaupassant.
At the time, AOL chat rooms were not open to people who were not AOL members. But so many people heard about our chats and began expressing interest in attending, we decided to move. In 2001, we moved Spondyville 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, expanding the vision that had started on that AOL message board, and whose only purpose was, and is, to make Spondys laugh about their disease and hopefully see that having AS is not the end of the road, it’s simply a course adjustment. And that laughter truly is, the best medicine.
In 2009, I got it into my head that if there could be a month devoted to Grilled Cheese Sandwiches, (And yes, there is one.) then Spondylitis Awareness deserved its own month too. I’m proud that my idea for an “April is Spondylitis Awareness Month’ campaign has now become an annual event in the AS Community.
In 2012, I co-produced “The Best Medicine”, a Night of Comedy to Benefit the Spondylitis Association. It was held at a well-known comedy club in New York City and was a major success, raising more than $17,000 for the SAA. We plan on it becoming an annual event in NYC and will be taking the concept to other cities around the country.
In 2013, I co-produced another successful “Best Medicine” comedy night right here in NYC, and I was appointed as a Patient Representative to the FDA for Spondylitis, and attended the first of what I hope will be many FDA Arthritis Advisory Committee meetings in Silver Springs, MD. I am proud to represent the Spondylitis community.
What does the future hold? I hope I’ll keep giving people something to smile about and demonstrate through my writing and poetry, that AS doesn’t affect one’s creativity.
P.S. Major Kudos to Cookie Hopper for this wonderful demonstration of the depth and diversity of the AS community. We are all Spondys and we are all Fusing Together.
There is a moment, after they tell you,
That you have an incurable, chronic degenerative disease,
That you feel all alone,
That you ARE all alone,
That you are the only one that you know that has to deal with something so huge,
so formidible, so difficult, so challenging and utterly life-changing.
That everything will be okay,
That you feel they are lying, that your life is now definitely and completely over,
and that no-one understands or knows the full extent of what you have lost.
We do. We who have what you have. We who’ve lost what you’ve lost.
We who feel the pain that you feel. We who struggle with what you struggle with.
We’re fighting to keep our lives from becoming less than what we dreamed they would be before all this.
And we’re scared that we are losing the fight.
We know. We know the fear of unknown disability and uncertain futures.
We know how what you thought you were is no longer how you are.
We know how hard life has become in more ways than anyone else can possibly know.
We know. We are a miracle in your life.
We are the vindication that you are not alone, that you are understood by someone.
We are your reassurance that despite it all, you can make it through the difficult times. We are your mirror and your sounding board.
We are your miracle.
We are not alone, we are united in our understanding.
We are each other’s insistence that we can carry on, that giving up is not an option.
We are each other’s lesson that our lives still have worth and can continue on,
striving to learn and then reaching out to teach, in an unending cycle of giving and receiving.
When you sink into despair, and think the worst,
We know. We have too.
We know all the levels of Hell that there are to know.
Just as you know them.
We will steady you, so you don’t fall, help you learn to cope and shed real tears for your pain,
which is the pain we, ourselves know all too well.
There is a moment, sometimes long after they tell you that you have an incurable, chronic degenerative disease,
that you come to know that you are still you and that despite it all, you are going to be all right.
We are each other’s miracle.
16360 Roscoe Blvd. Ste. 100Van Nuys, CA 91406
(800) 777-8189 U.S. only
or (818) 892-1616