My memory of that day in 1997 centers around driving home on I-295 in Portland, in the Fore River area; that’s when the words I’d just heard took hold. “You have been diagnosed with ankylosing spondylitis.”
I kept thinking to myself, ‘Arthritis? Me? I have a chronic disease? I’m 37.’ After years of debilitating, misunderstood and increasing pain, there it was. The truth had arrived.
On Dec. 10, at age 56, in Millinocket, Maine, I completed my third marathon of 2016. It was a 13-degree day with sub-zero wind chills courtesy of Mount Katahdin. The journey from diagnosis to marathons was as long as it was surprising.
The disease had left me with fusion in several locations and decreased my mobility. Playing with my children on the floor consisted of getting on all fours and letting them climb on me. Anything else was too painful. Bumping into an unseen object or stepping into a hole sent me into convulsions. Breathing deeply was near impossible. The mobility in my neck was and is compromised.
When my first rheumatologist, Dr. Larry Anderson, ordered an exhaustive set of X-rays, it was so painful trying to position myself on the table, that it brought me and the X-ray technician both to tears.
Running? Very funny. If I ever attempted to jog, two or three steps were about all the pain would allow. My diaphragm screamed, ‘Stop.’
After years of drug trials, I began Enbrel injections in 2003. As I recall, the relief began fairly quickly and some light activities, such as golfing, became palatable and more enjoyable. Breathing wasn’t as painful. At some point, I noticed that I wasn’t waking up all night long when I rolled over.
About six years ago, my daughter, Doria, was getting ready for her high school basketball season and wanted somebody to run with her. I told her I’d give it a try.
I hadn’t run seriously since graduate school and before that as a participant in high school and college athletics. I wasn’t expecting much.
At first, a quarter mile was about all I could muster. Doria would run ahead. I’d walk for a while and try again when she looped back in my direction. After a little while, I could do a mile. Soon, she was practicing with the team.
I was starting to feel some benefit and kept going. There’s a roundabout down the street from our house, exactly one mile. I vividly recall the euphoria of making it to the roundabout and back without stopping. I could run. I could breath. My legs were coming back.
Then I noticed a couple of friends posting road race photos on social media. It looked fun. Doria and I registered for one, the Jingle Bell Run in December of 2010 in Freeport, Maine. A fundraiser for, drum roll please, the Arthritis Foundation.
I was hooked for all the right reasons. I was feeling better. The road running community is supportive and inclusive of all ability levels. And, yes, it stirred a little competitive juice. In short, I smelled fun.
I contemplated running more regularly, increasing my mileage; and consulted Dr. Brian Daikh, asking if such a load was advisable. His answer was simple and direct: “If you feel up to it, yes, go ahead.”
From there, I slowly, methodically kept upping the ante. That 5K turned into a 10K, then 10 miles, then a half marathon. It seemed the more I ran, the better I felt. There are times when it hurts, yes. The disease is not reversible nor curable. There are good days and bad days. For the most part, though, my body has held up.
Last month, at the annual checkup with Dr. Daikh, we celebrated the triumph of three marathons in 2016 (five total and more planned.)
“It feels as if the combination of treatment and running has slowed the progression,” I told my doctor. He said, “I have no doubt that it has.”
There are times when I’m running, I forget the AS; that I feel normal again. It’s fleeting, but blissful.
• Switched from Enbrel to Humira and back to Enbrel.
• Two more marathons, my ninth and 10th, with No. 10 during a family trip to Oslo and Bergen, Norway.
• An ultra marathon on a Maine Island, Great Cranberry 100 … I made it to 60 miles before needing to shut it down.
• A new diagnosis from my rheumy, osteoarthritis in my feet (to go along with the AS in my spine).
• Celebrated my new diagnosis by running a half marathon in Millinocket, Maine (4 degrees when race started) several days later.
A Note from the creator of Faces of AS, Cookie Hopper
“It was important for me to do this, not for myself, but for each one of the Faces on this site and those who are still unknown. I wanted to show the reality of this disease and the courage it takes to live our lives. I wanted to honor those who have Ankylosing Spondylitis, who I admire and respect.”
Creator of Faces of AS, SAA Member, and Face 0062
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