Tag Archive | running

Racing Against Stiff Person Syndrome

“The miracle isn’t that I finished. The miracle is that I had the courage to start.”
-John Bingham

My limitations with Stiff Person Syndrome made training for the 5K extra challenging, daunting at times, a few days impossible.  Fear was consuming because of SPS unpredictability. Publicly announcing my intent to do the 5K committed me without knowing if the starting line would be approachable that day.

After two weeks of intense anxiety interrupting my sleep, an unexpected calm settled over me the night before the Donna Deegan 5K Run. I drifted off to a peaceful night’s sleep, briefly interrupted by a nocturnal sugar drop.  After a small snack correction, I went back to sleep.

I woke up at 4:30, alert, excited and looking forward to the 5K experience. Packing a backpack with my half case of water (weight stability for my stroller), diabetic supplies, snacks, and medication; my preparation resembled a wilderness trek instead of a city run. One thing I learned from my six weeks of 5K boot camp was having a strategy for optimal food intake and medication timing.

Banter with friends helped keep my mind preoccupied. I felt a connection with the crowd: running in tribute, support, or in memory — several survivors. Though their advocacy was for breast cancer, mine was for Stiff Person Syndrome, Rare Disease Day, and Lulu (breast cancer and SPS).

As the starting time neared, a few jitters started to poke at my well-being. Since I had a jogging stroller, I was delegated to the back of the pack, a sensory relief for me. With my beginning steps, I felt comfortable with the pace, the crowd, with me. As I started to pass the walkers, my confidence grew.

As in my early running days, I entered a mental zone, aware of my pace, in sync with my breathing, focusing on the pavement in front of me. SPS sensitivities often crank up the volume on my sensory intake, but navigating around the crush of people with my stroller was a mental diversion. Agoraphobia was not an issue… just concern over ramming someone in the backend.

A personal competitiveness set in, not against the other runners, against Stiff Person Syndrome. Hitting the second mile mark at 25 minutes, I exhilarated in the possibility of finishing.  Just one time… taking something back that diagnosis had stolen from me. Crossing the finish line was a personal victory over Stiff Person Syndrome for me.

At home, I wept for many reasons, but mostly with gratitude.

Photos – Donna Deegan 5K – 2013

My racing stats:
Gun time:   38:03
Chip time:  37:10

Copyright © 2013

Febrary 28, 2013

Febrary 28, 2013

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