How we face scary accessibility challenges with ALS

It takes real courage to face our fears, especially when those fears are tied to the daily challenges of living with ALS. Simply telling someone about what scares us — and knowing they have our back — goes a long way toward building confidence.

That is why this month’s theme over on the ALS News Today Forums feels timely: scary things we face anyway.

As one of the forum moderators, I get to post questions and polls, then watch the conversation unfold. Of course, I jump in too, and I definitely have my favorite topics — like our recent prompt: Let’s build an imaginary ALS haunted house.

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Scary things

The truth is, I don’t actually need to imagine an ALS haunted house. I just need to navigate a home without accessible features! We’ve all been there, right?

One of my past calamities involved a house I visited for a meeting that I was led to believe was accessible, but was anything but accessible — the walkway from the driveway was narrow; the front door threshold was 3 inches higher than the landing, making it difficult for me to clear my feet fitted with ankle-foot orthoses; and a colorful, handwoven rug with long fringe on all four sides was laid in the foyer, and my shuffling steps snagged it and dragged it along with me. And that was just my arrival. Clearly, one person’s idea of accessibility isn’t necessarily the same as another’s.

Another topic we explored on the forum was things that still scare us, but that we face anyway.

For me, the answer is entering a public restroom. I never know what’s lurking behind that door. Over the years, I’ve braved overcrowded spaces, stall doors that swing open but won’t latch, strangely placed grab bars, and “accessible” stalls that were anything but.

All this Halloween talk also brought back childhood memories: trick-or-treating misadventures and watching “The Wizard of Oz” every October on TV. While I loved following Dorothy and Toto on their journey home, my favorite characters were always the Scarecrow, the Tin Man, and the Cowardly Lion.

Little did I know that decades later, ALS symptoms would have me mimicking both the floppy Scarecrow and the stiff-legged Tin Man — sometimes during the exact same trip across the living room! These days, though, my deepest admiration goes to the Cowardly Lion, who eventually discovered that the courage he needed had been inside his heart all along.

Living with ALS takes every ounce of courage we can muster, but facing our fears together makes us stronger and better equipped to tackle the next hurdle.

I invite you to join us in the forums. Let’s laugh, share a tear, let out a silent scream, and say “Boo!” to ALS together.

Note: ALS News Today 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 other 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 ALS News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to ALS.