To scoot or not to scoot: Using a mobility aid with a dynamic disability
We all deserve to revel in life, rather than just survive it
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When I received my Social Security Disability retro check after a two-year appeal, the first thing I purchased was a mobility scooter. I had rented one for a couple of advocacy trips and a vacation by then, and knew it would be best to have my own. Consequently, it seemed like the most appropriate use of that payment.
That was nearly 10 years ago. Since then, my scooter has enabled me to enjoy so much more of life than I ever could have without it. Sarcoidosis and arthritis cause severe pain and fatigue, and the medications I take to treat them have made me gain over 100 pounds. Taken together, they make it difficult to walk very far. How far is “too far” can vary, though, and I never really know until it’s too late.
It’s not always easy to travel with a scooter. It can be hard to maneuver through large crowds and tight zigzag lines, and I need to be sure my battery will last (or find a place to charge it). Worst of all, scooters and wheelchairs often get damaged when checked with airlines. Mine has suffered everything from simple scuffs and scrapes to broken or missing pieces that required sending it out to be fixed. Even when the airlines cover the cost of those repairs, I’m still left without the aid for weeks at a time.
Still, having it makes a world of difference. With my scooter, I’m able to go the distance, whether that’s sightseeing on vacation, attending a baseball game, or meeting with legislators on Capitol Hill. Over the past decade, my scooter has helped me through seven cruises, 13 countries, 14 stadiums, and more than 25 advocacy and awareness events.
It’s really showing its age now, though. The oft-repaired pieces don’t stay on so well, and the vinyl seat back is worn through. I’ve been using purple duct tape and cute decals to add fashion to function, trying to make it last. Still, I was not prepared for what happened on my latest trip.
We shouldn’t have to struggle
As my husband and I were getting ready to leave for a cruise last month, we discovered that my scooter wasn’t working. It had been plugged in overnight, but the battery wouldn’t hold the charge. It was clear I needed a new battery … or maybe a new scooter.
There was no time to order a replacement, and it was too late to arrange for a rental. After a few expletives from each of us, my husband immediately offered to cancel the cruise. He assured me he would be OK with it — better that than see me suffer. But I was stubborn and insisted we still go.
I thought, if anything, this was the one trip I might be able to survive without the scooter. We hadn’t planned any walking tours, and our port stops included rides to a beach or pool. The walking would mainly be on the ship itself. I can usually walk without as much pain since my hip replacement; my biggest problems now are fatigue and shortness of breath. I hoped that with pacing and frequent breaks, I could manage it.
And I did!
According to my smartwatch, I walked more on that first day than I usually do in a month. And it continued like that throughout the week: I paused often to catch my breath and stayed in my room or on the balcony to rest when necessary. I did what I could, and my husband supported me every step of the way.
I started thinking, “Maybe I don’t have to replace my scooter, after all. Maybe I don’t need it anymore. Heck, maybe I didn’t need it before. Maybe I’m not really disabled. Maybe I’m a fraud.”
Yep — it happens that quickly. For many people with a dynamic disability (when symptom severity and ability fluctuate), a good day often triggers our impostor syndrome, leading us to question everything about ourselves and our disability. A bad day leads to frustration and depression. We think, “If I could do it then, I should be able to do it all the time,” even though we know that, to quote a favorite old commercial, “That’s not how this works. That’s not how any of this works.”
The reality is that I struggled on that cruise. Even weeks later, I’m not fully recovered. If a person is able to run a marathon one day, that doesn’t mean they don’t need a car to get around on other days. Likewise, I know I’ll still need a scooter for my next big outing.
I was able to manage this cruise on foot, but our experiences should be more than just endured. If a scooter or other mobility aid enables us to revel in life, rather than just survive it, we all deserve that.
Note: Sarcoidosis 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 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 Sarcoidosis News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to sarcoidosis.
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