I am a freelance columnist for Friedreich's Ataxia News. I was recently published on my column, My Darling Disability, and I wanted to share it here, too. You can either read it by following this link, or just keep scrolling below.
I was diagnosed with Friedreich’s ataxia (FA) in 2013. At that point, I was still pretty “normal.” I could still do almost everything except walk in high heels or perform well in sports. I was independent and capable. After seven years of symptom progression, I am now disabled.
I am 100% dependent on assistive devices to walk. My speech is slow and slurred. My arm movements are ataxic, slow, and jerky. My fatigue is chronic, and my circulation is poor. In other words, my FA has affected my life completely, and it constantly demands adaptation and attention.
I used to get offended when people offered to help me, especially strangers. I would become stubbornly prideful and convince myself that I didn’t need help. I would internalize all of my feelings and warp their kind offers into offensive pity. I would kindly say, “No, thank you, I’m fine,” so many times a day that it made me begin to question my abilities.
I realized that I am now visibly disabled. My struggle was apparent, even with assistance from my walker. My façade of strength and perseverance was cracking, and my disability was more apparent than my diminishing abilities. I thought I had fully accepted my disability, but realized that I had only accepted my view of my disability and didn’t take measurements of how everyone else viewed it.
I began making a conscious effort to appreciate and accept appropriate offers. For example, I say, “Yes, please. That is so kind and helpful. Thank you so much,” when people offer to hold doors open for me or carry things for me. I realized how empowering it was to accept help with those simple tasks that were increasingly difficult for me. Accepting help used to chip away at my pride, but now it allows me to keep going about my life safely.
The other day, I went shopping by myself. The shopping carts at this particular store are about 200 yards away from the handicapped parking spots. While I can take a few unassisted steps when necessary, I can’t walk that far. I needed help to get to the cart, so I did something I’ve always dreaded: I parked and unloaded my walker, used it to walk to the shopping carts, loaded my walker into the shopping cart, pushed it all back to the car, unloaded my walker back into my car, and then went into the store to shop.
I got a few strange looks, but I felt victorious doing this task completely by myself. While I almost always accept help, moments like this reinforce the depth of my disability and allow me the opportunity to appreciate the value of others’ kindness.
Adjusting to life with a disability is all-consuming. For me, admitting that I am disabled has helped me accept the reality. When I accept my reality, I am open to help from others.
Recently, I was talking to the scheduling department at a local hospital regarding a stress test my cardiologist ordered. I’ve never had one, but I know they generally involve walking on a treadmill. I had to say, “I want to note that I am disabled. I am unable to walk on a treadmill.” The scheduler had to talk to the technician and confirm with my doctor that a nuclear stress test would be an acceptable substitute before finalizing my test date.
Having to say “I am disabled” was emotional. Normally my walker makes my disability obvious, but as this was a phone call, she didn’t see my walker. The word “disabled” left a bitter taste in my mouth and I did not enjoy that conversation. Yet, I was proud of myself for being an informed advocate of my disability.
At first, my walker made my disability feel like the elephant in the room. I felt like I was advertising the thing I wanted most to hide so that I could feel “normal.” But as my symptoms have progressed and I am becoming more disabled, I am strangely thankful for the helpful attention my walker attracts. In a way, my walker feels like an empowering reminder of my strength, despite my disability.
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