For a year I lived with a diagnosis of Friedreich’s ataxia, a genetic, neuromuscular disease whose symptoms are quite close to mine.

My symptoms: Since 2005 I have been aware, at first dimly, of a mobility disorder developing in me; today, in 2015, I walk with a cane or impressive walking stick, stiffly, like I am wearing very tight jeans; I have little sensation in my lower legs and even have moments of “body confusion” in which I think I am moving my right leg but my left leg moves. I sway when I stand and fall/walk into walls and my sense of not knowing where I am in the world contributes moments of comedy to my day. I was in my mid-30s when the symptoms began to attract my attention, which means the symptoms began to appear several years earlier.

Instead, it is very likely that I have a disease called spinal muscular atrophy, but I am grateful for that year in which I thought I had Friedreich’s ataxia. This is because all that I knew upon learning my diagnosis was my diagnosis—Dr. M, my neurologst, did not even hand me a tri-fold pamphlet, “So You Have a Potentially Life-Shortening Condition,” if such an item is even available—but there were online groups ready to embrace someone like me.

For those with mobility impairments, or those who have lost mobility altogether, there are videos available offering tips and encouragement. I have chatted with people across the country who, like me, developed symptoms later in life. If you, like me, were sent out of a neurologist’s office with not much more than a grim little sad smile and an appointment reminder card, start here: National Ataxia Foundation on Facebook. There are 3000+ people in this group. They helped me keep moving; they helped me keep wanting to move. (Jason and Kristin: You both rock!) People really do pay it forward in life.

(Jason has a terrific website called My Life, which has a far larger number of readers than this one right here has and I am a jealous person. He has been campaigning for national recognition of and education about ataxia, akin to the “ice bucket challenge.” Please visit his site.)

Today is International Ataxia Awareness Day, the 16th annual IAAD. It is a day to educate the public and raise funds to support research. Most ataxias are genetic in origin, and some are environmental; because I have a personal history in which I consumed two or three Olympic-sized swimming pools of alcohol over the course of two decades, it is understandable that someone (well, me; I thought this) might think my drinking contributed to my symptoms.

What I have is instead a motor neurone disease, a cousin to ALS. I was born with this, and the condition was going to emerge as it did, when it did, following its own perfect timing.

My first diagnosis of Friedreich’s ataxia came soon after my girlfriend and I started our story together in 2012. I have always been a neurotic, self-conscious person, even neurotic and self-conscious about my being neurotic and self-conscious. She helps me lose that self-consciousness more than a little bit every day.

Today is Jen’s birthday, which explains the image at top. (Happy birthday, my dear every sweet name I can come up with!) This website is an ongoing letter to her; insert “Dear Jen” at the start of the first piece I published back in 2013 and keep in mind that “Yours truly, Mark” has not yet appeared. There have been many indications that this was going to be and continues to be a special relationship, right from the moment we met, but there was one related to all of the above.

There are problems inside the spinal cord of a person with either Friedreich’s or spinal muscular atrophy. The problems inside my spinal cord are so severe and my walking so impaired that my neurologist’s first diagnosis of the more severe disease made sense.

Jen and I went to bed the night I was diagnosed and she started to touch and kiss my back, along my spine. She didn’t let me pull away. It was wordless and it was every word.

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The number one song the day Jen was born was Diana Ross’ “Upside Down.” Strikes me as appropriate.

 

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