“We are all different – but we share the same human spirit.
Perhaps it’s human nature that we adapt – and survive.”
Just realised something startling. In three years of online writing, I’ve never as much written one blog post about the possibility of ending up in a wheelchair.
Is it denial?
Simply focusing on being positive?
I don’t know what the heck it is, either way, writing about it is way, way overdue.
Of course, when you hear ‘multiple sclerosis,’ you straightaway think of being confined to a wheelchair for the rest of your life.
Others think of you ending up in a wheelchair for the rest of your life. You can hardly hold it against them.
And, suddenly you see wheelchairs everywhere.
If MS hasn’t already put you in one, the word ‘wheelchair’ might suddenly mean a lot more to you than just a few letters mangled together. It’s not an offensive, discriminating term of abuse towards anybody occupying one because you’re not programmed that way. You empathise with people in wheelchairs, you wished you could lift their illness from their body.
But what if a wheelchair suddenly takes you to another new level of having to adapt to life with MS? You wonder how many more new levels you will have to accept.
With relapsing/remitting MS, predictability is shaky at best. Highly fickle disease progress, if any. It’s hard to plan your life around an illness that comes and goes as it pleases. It’s even harder when you know you’re on the progressive road where MS might lock you indoors, unable to do anything. It’s normal to fear the loss of mobility, independence and turning claustrophobic being trapped in a wheelchair.
If multiple sclerosis was a predictable illness, we would know if or when we need to buy a wheelchair. We might get the house padded in time for you to get lessons in how to avoid doorposts, furniture, pets and family. You could ask friends if they have any tips on how to adapt and accept.
I’m not really a numbers kind of girl, so statistics are only good to me in small amounts. 85% of people diagnosed with MS are in the relapsing/remitting stage of MS, where unpredictability as well… a constant reminder your brain went a little cuckoo on you.
You simply don’t know if, in a decade or less, you will be in a wheelchair. This is the anguish of relapsing/remitting MS. No wonder so many people are stricken with fear when they see anything with two wheels shortly after being diagnosed.
Writing this now, it becomes clear that it is not denial.
I simply refuse negative thinking, negative wording, a negative outlook and most of all, I refuse to believe that this will be my future. “It’s not the end of the world,” really means it’s not the end of the world in my belief. I find a lot of inspiration in seeing some of my friends in their wheelchairs. I can only applaud their commitment to wanting the same lifestyle everyone else wants.
In fact, some are more mobile than I am when crippling fatigue makes me physically unable to rely on my own legs. Seeing them whizz through the shopping centre, playing soccer, dancing and enjoying life in their electric wheelchair.
Seeing me tag behind with only a quarter of a tank of energy left… nice is different!
So yes, wheelchairs are definitely an eye-opener if you’re not in one yet. But in fact, it’s a new beginning for people who’ve been trapped by fatigue and pain for too long, unable to enjoy a social life, a productive life. Like everything else you had to get used to after your diagnosis, a wheelchair will prove you that with support, time and some learning to get around, it will be the start of a new life.
I would consider it triumph over adversity.
©Willeke Van Eeckhoutte and Ireland, Multiple Sclerosis & Me, 2011-2018