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Your Spondylitis Stories

Your Stories

In this section, each month we will be posting a new story from one of our members regarding their experiences with spondylitis. This is your chance to lend your voice to the community and to help share information and raise awareness regarding ankylosing spondylitis and related diseases. An archive of stories is available to SAA Members in the "Tell Us Your Story" Section in the Member Area.

Want to tell us your story? Then send it to Chris Miller at chris.miller@spondylitis.org. We encourage you to send us a picture to accompany your story as well!


Living With Ankylosing Spondylitis
By Harvey Pine

I live in Sandpoint Idaho located 60 miles south of the Canadian border. We recognize the same people as we go about our daily business. While shopping, a clerk asked me, “Do you have ankylosing spondylitis?”

Expressing my surprise, “Yes, how do you know? And why do you ask?”.

“I have just been diagnosed. I have been studying and starting to recognize the symptoms in older people.” I could see the terror in his eyes as he studied my bent back.

“ I am in a lot better shape than I look and get along quite well.”

I sent him some literature from the Spondylitis Association plus my card with a note inviting him to contact me any time he wanted to. He did not contact me and I did not follow up but the incident caused me to reflect on how AS has affected my life.

I will be 70 next birthday. I would not wish AS on anyone but it has been more of a blessing than a curse. Of course there is the obvious aesthetic issue. My 6ft. 1 in. frame has been pretzelled down to 5 ft. 8 in. This exaggerates the potbelly. The balding head and forty pounds over weight probably can’t be blamed on the AS but it adds to the image.

I met my beautiful wife while still in my twenties. I was part of the military and in the prime of life. We have been together for over 42 years and I have never had any reason to think the AS changes have made a difference to her. Her support relates more to her personal values of commitment and devotion than to anything special about me. My claim to fame might be recognizing the value of these characteristics during my courting days. I have heard the back fence gossip, “Why does someone who looks like her stay married to someone who looks like him?” I find these comments more amusing then offensive but it does give me reasons to be thoughtful and grateful.

I have interests on the north side of the border and cross frequently. Armed guards harass me when returning, believing my need for pain killers motivates my trips to Canada in order to cheat the American pharmacy industry out of some profits. I use little medication so the harassment is a minor inconvenience but it gives me some insight how lobbying efforts in Washington can affect ordinary people on the frontiers of Idaho.

I have walked by playgrounds and heard children say, “Look at the hunch back”. The innocence of children is always loveable but it reminds me that I do not look like I remember myself. I am retired from Los Angeles County Fire Department and fortunately was able to retire young. I have visited the academy and young officers assume I must have broken my back. This inspired some older officers to make up the story about how I was carrying a beautiful woman down a ladder. My mind was so involved with what I held in my hands that I forgot to pay attention to what my feet were doing. The moral to the story being that what ever you hold in your arms should not stop your feet from paying attention to where they are going. The story is fiction but the moral is still true.

Knowing I would retire young forced me to plan my life accordingly. Money that may have been squandered was invested and pays dividends today. My wife felt we should do things while we could and save luxury vacations like cruises for a latter time. As a result we have bicycled across the country, hiked across the Swiss Alps and spent weeks in the wilderness. Recently we took our first Cruise. Most people our age were veterans but we enjoyed the novelty of a new experience. Age catches up with most of us. We can no longer do the things we think about but few people my age can. AS forced me to capitalize on my youth.

Everyone has some burden to bear. The lesson from me is to turn your curse into a blessing or at least do the best with what you have.

Today, my main interest is writing. The imagination in my head counts more than the limitations from my back.

Join SAA Today and become part of a community determined to find the
cause and cure of ankylosing spondylitis and related diseases.




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