My arms couldn’t hold my body up in a crawling position any longer, so I face-planted on the matted floor in defeat, yet with a small, self-satisfied smile. As I lay collapsed on my stomach, my physical therapist towered above me and yelled triumphantly, “You just crawled across a whole tile of the mat!”
It was Thursday, now my favorite day of the week because of my weekly physical therapy appointments. I’d been working on mastering crawling for a few months in PT, as I wrote about here. This was the first session in which I sustained a crawl instead of just moving each arm and leg only once before collapsing. I was able to propel myself about 2.5 feet forward across a gray tile on the mat. My therapist made sure I noticed, so my slight smile widened, although he couldn’t see it.
PT has been part of my regular routine for two years, and I’ve thoroughly enjoyed my time there. Living with a progressive condition like Friedreich’s ataxia dictates that almost every activity will become more difficult for me each week.
So, it’s exciting to feel accomplishment sometimes. Maybe my body’s war with Friedreich’s ataxia will still end in severe loss of function and death, but noticing any small physical improvement makes me smile.
Despite being proud of my accomplishment, I know that crawling a few feet isn’t a cause for celebration for most people, and it’s definitely not one I would have envisioned for myself in my younger years.
When I was a kid, I dreamed that 35-year-old Matt would be living with his wife and kids, making a ton of money, and succeeding at an average life. Yet, my progressive loss of physical function due to Friedreich’s ataxia sneakily smothered those dreams.
Maybe I should feel ashamed that a huge, triumphant sign of progress is crawling forward a few feet in my mid-30s.
Is this what “moving the goal posts” means?
I think everyone with a debilitating condition can relate to the thought of lowering the expectations of what we’re capable of. And we often confuse our physical capabilities with our self-worth, or at least I do.
“I’d like to see you do more physical activity each week than in our sessions alone,” my physical therapist told me. “I know your goal coming here was to maintain functioning, but I am seeing small improvements. I think the more physical activity for you, the better. Look into finding a physical trainer.”
Two weeks later, I arrived at Unique Fitness, a fitness center specializing in meeting the needs of the disabled. I looked around the empty gym and was amazed to see multiple pieces of exercise equipment specifically designed for wheelchair-users — more types than I’ve ever seen. I met with the owner of the gym, Damon, and talked about maintaining my current state of functioning, and even hoping to progress in some abilities.
Damon asked me to practice picking up very small weights that were placed on the floor on either side of my wheelchair, then place them on my lap. This simple exercise was incredibly difficult, because apparently my oblique muscles are very weak. I didn’t know that.
As I was leaving, I wondered what childhood Matt would think if he saw me there, doing simple exercises at a special needs gym. Would he be ashamed?
As my abilities have changed, so have my goals. Now, an accomplishment is crawling a few feet, or bending down and lifting a small weight from the floor to my lap. And no matter how small those acts are, they make me feel happy and accomplished. I will not be judged by a child.
The goal posts may have been moved, but I refuse to quit playing the game.
I left the gym as a member of Unique Fitness, and I start personal training in a week.
Right now, I am doing the best I can. That’s enough for me.
I believe that staying active is the best way to thrive in spite of Friedreich’s ataxia. Suitable gyms and private physical therapy sessions aren’t easily accessible to everyone, so I want to highlight the work of another Friedreich’s Ataxia News columnist, Frankie Perazzola. Frankie is certified as a personal trainer and posts exercise videos online that anyone can do at home. Follow her on Instagram to check out her videos.
Friedreich’s Ataxia News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.The opinions expressed in this column are not those of Friedreich’s Ataxia News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to Friedreich’s ataxia.
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