30 Days of MD: Tali Maron

by Kevin Schaefer | September 20, 2020

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Day 20 of 30 Days of MD Topic: Using a Wheelchair and MD This is @rollwithasmileblog’s story: Push, they said. Don’t give up! Try harder! Don’t let the disease win! Once you sit, you will never walk again! You can do this! – These words made sense to me, after all, that’s what I’ve been fed since infancy: wheelchairs are sad, disabled people are to be pitied. So I listened, internalized, and pushed. I pushed my body into pain and exhaustion, into dozens of falls and injuries. Every fall, every trauma triggered further muscle deterioration and faster progression of FSHD. I pushed myself into anxiety, fear of falling, and eventually into being afraid to leave the house. I pushed until I started resenting, even hating, my body. – Not once had a medical professional suggested l listen to my body and try to use a mobility aid! It was the last resort, a sign of defeat, something not to be said out loud. – When I first started using a wheelchair almost four years ago, I felt like a failure. My walking was at a snail pace (with a walker), the slightest wind could throw me off balance, and I had severe anxiety from merely standing. Still, I thought I should have tried harder. – For years I invested all of my energy into maintaining my walking ability, into being “normal” and “worthy”, while everything else in my life went to shit! For years I chose the role of an observer from the safety of my home feeling miserable, ashamed, and frustrated instead of living a full, happy life in a wheelchair. ???? – Ahh, ableism. You definitely played a trick on me. ????????‍♀️ – Thanks to my wonderful carriage, I go anywhere my heart desires (well, almost anywhere because: #accessibility). I am in less pain, haven’t fallen once, the anxiety episodes are rare, and the FSHD progression has slowed down! The only downside is weird attitudes from (most) people: they either praise me, pray for me, or ignore me altogether. It sucks, but it’s on them. – Wheelchairs aren’t sad! They are freaking amazing! Thanks to them, I’m living, I’m participating, I’m interacting, and I’m loving every minute! #MDAwarenessMonth #MDAwareness #30DaysofMD

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