|A message from the Mayor of Spondyville|
|Welcome to Spondyville. If you're reading this, then most likely you, or someone you know, has been recently diagnosed with Ankylosing Spondylitis or some form of Spondylarthropathy.
First off, let me reassure you. You are NOT alone. There are close to 33 million people world-wide with Spondylitis. The CDC now estimates that as many as 2.7 million Americans may have some form of axial Spondyloarthropathy. That's more people than have Multiple Sclerosis, Cystic Fibrous and ALS (Lou Gehrig's disease) combined ... and that's almost twice as many people as have Rheumatoid Arthritis in the United States.
Secondly, DON'T panic. This is not the end of the world, although, it may feel like that right now. Trust me, You WILL get through this.
True, Ankylosing Spondylitis is a chronic degenerative disease. And it can, in it's most severe form, be debilitating. Your spine and neck could possibly fuse. You could be in constant pain for years. On the other hand, some people never fuse and some have very little pain. The truth is, for most, this disease IS manageable. Yes, you may need to make some changes in your life. (Your days as a rodeo cowboy or a professional wrestler may be over.) But with a little fortitude, a certain steely resolve, a sense of humor and a willingness to adapt, you can cope with AS and still lead a happy, productive and even satisfying life.
On the medical front, the future looks bright. New medicines and new treatment options are being approved all the time, and research to find a cure for AS continues. I encourage you to become a member of the Spondylitis Association of America, the only organization that devotes its entire efforts towards Spondylitis and its related diseases. For over 25 years, the Spondylitis Association of America has been at the forefront of every major advance in Spondylitis research. They have a four-star rating from Charity Navigator, and they were recently named one of the Top Ten non-profits in the United States.
The Spondylitis Association of America's website, www.StopAS.org or www.Spondylitis.org is the most reliable source of accurate information about Spondylitis on the world-wide web.
I hope you'll enjoy your stay here in Spondyville. Remember, in Spondyville, ALL the residents have AS. So here, you're not that guy at work who can't bend over, or the gal with the perpetually stiff neck, you're just one of the townfolk, and we understand what's going on with you, because, we've been there too. In Spondyville, you're an individual; you're not your disease.
The residents of Spondyville are a very warm and supportive group of people. The longtime residents, who are quite experienced in dealing with this disease, are always willing to help a new-comer and fellow Spondy by sharing their knowledge and experiences.
I hope you'll check out the Spondyville Support Group home base, and I look forward to seeing you around town ... You can also follow Spondyville now on Facebook.
Here's the Bottom Line and a few hard truths.
|Spondyville Mayor, Michael Smith, (a.k.a. Spenser23), accepts the Harry Bruckel Volunteer award in October 2000, from Josh Eldridge, the President of the Spondylitis Association of America.|
|To the Newly Diagnosed:|
If you need to reach me in regards to anything on this website, or if you have any questions, please feel free to write me at:
I dedicate the following poem to ALL ASers;
A Poem for my fellow 'residents' of Spondyville
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.
There is a moment, after they tell you,
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 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 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 are your miracle. 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.
|Poem copyright 2004 by Michael Tracy Smith|