Is a Wheelchair Really the ‘Worst Thing’ for People With MS?
Needing a Wheelchair Is a Common Fear
One popular response I saw was that people expected to be in a wheelchair shortly after diagnosis, and they weren’t. It’s a topic I’ve seen over and over again when people talk about what would be the worst thing to live with when it comes to MS. Many people say that being “confined” to a wheelchair would be the thing that sends them over the edge.
That’s fear speaking, I suppose. I hope. But I also have to say that I feel comments along the lines of “at least I’m not in a wheelchair” or “if ever I can’t walk…” are pretty disrespectful to our MS brothers and sisters who are living the fullest lives they can while coping with reduced mobility.
Don’t get me wrong: Many of us have our personal “that bad” (as in, “If it gets ‘that bad,’ I don’t know how I’ll cope”). These may seem like end-of-the-world scenarios to us now, but almost every one of them can be answered by someone living through the very thing we can’t imagine getting past.
My Personal ‘Worst’: Not Being Able to Speak
For me, losing my ability to speak (or otherwise communicate effectively) seems like it would be the worst possible development, but then I met one of the most eloquent and funny people I’ve known who lives with MS, and he uses speech assistive technology to get his words out.
In fact, the longer I live with this disease, and the more people I meet who struggle but still live full lives in spite of it, the more I feel like “that bad” isn’t that bad.
What We Fear Is Someone Else’s Reality
Most important to me, however, is the fact that we in the multiple sclerosis community might be disrespecting our compatriots in the same way we see (and complain about) others doing.
Thinking “at least I’m not (fill in the blank)” can be an internal coping method, and an effective one at that. I’d suggest, however, that we keep that stuff internal.
When I hear “at least I can still work full-time,” it reminds me that even though I’m doing something, I’m not contributing to society at that level. When someone says, “at least I can still walk without a cane” or drive, or balance a checkbook, or any of a number of the things I can no longer do, I’m brought up short.
It has to be the same for those of us who read “at least I’m not in a wheelchair” or “I’d never want to live in a nursing home,” or myriad other “that bads,” who are getting on as well as possible with that very “that bad.”
Let’s Think Before We Speak
We all think, say, and do whatever we must to get through the difficult times. But perhaps — particularly when we’re in a place where people at all stages of MS come for support and camaraderie — we should think before we blurt out what we wouldn’t want to have to live with. Chances are, there are people present who have no choice but to live with our greatest fears.
Wishing you and your family the best of health.
My book,Chef Interrupted, is available on Amazon. Follow me on the Life With MS Facebook page and on Twitter, and subscribe to Life With Multiple Sclerosis.
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