“Carpe Diem!” they shout, “Seize the Day!”
“Yay,” we agree, “We’ll definitely make every day count!”
Except Multiple Sclerosis doesn’t quite let us work like that. It toys with us like a deranged cat with a weary mouse. We make thrilling plans – or even teensy plans – for tomorrow. We make resolutions. We have dreams and come up with crazy ideas. “This time it’s really gonna work,” we think, “I can’t let people down again.”
And then, randomly, just as something starts to pan out and the coast looks clear, MS sidles up with a sly grin. “Sorry chum,” it smirks, “You’re staying in bed today. You’ve probably got enough energy for a shower. I can give you that at least.”
Or another evening, MS barges our positivity aside, “Look, I know this looks like a great party. Maybe for the old you, when I wasn’t around. The noise is confusing you, hurting you. And you can’t handle the multiple conversations anyway. And who are these people you’re supposed to recognise? Best go home.”
Another day it chips in, “Waste of time this meeting. I’m making your thinking all fuzzy today, so you can’t understand that simple graph. I’ve also made your awful memory extra crap today. And talking of crap, I’m sending you out of the room right now. Yes, right now! Hope that disabled loo is fixed. Embarrassing, ha!”
At home – when I’m not dozing – I’m either slumped on the sofa or shuffling around with my rollator (basically zimmer frame 2.0). Out and about I’m in a wheelchair. I really don’t mind. It’s what I’ve been used to for a very long time. It is what it is and for me it represents freedom. But it is so much more complex than “I can’t walk.” That particular slice of my disability is caused by just a couple of the twenty or so symptoms I have.
Invisible Disability Awareness week came and went recently. It was eye-opening to say the least and I always look forward to it. Some new disabilities to learn about and try to understand. Some brave souls ‘coming out’ with something new. Huge, debilitating ones. Mental health ones getting the attention they deserve. Scary ones. Minor ones (in the scheme of things). All of them impinging on people’s ability to lead what is portrayed as a normal life.
And there’s me, bumbling and rumbling around in my wheelchair. I can see people staring at me. Sometimes slyly. Sometimes bluntly and rudely. I know what they are doing, aside from fuelling their own curiosity. Or fancying me. They are making judgements. “Car accident? Stupid? Scrounger? Contagious? Lazy? Poor lamb, bless…”. Or indeed they ignore me because I’m too much to take in and some form of lesser being: invisible.
Look, I really don’t need pity. I’m happier – and sexier, obviously – than most people I know. I’ve lived a fulfilled, fun life with lots more to come. But neither do I need people’s judgement. My invisible symptoms are so many more than my visible one or two. But the wheelchair gives people an instant ‘take’ on me that will be difficult to shift whatever I do.
I am really not sure what I am saying here. ‘Don’t judge a book by its cover’ would be one cliche for you. ‘Look at me, not my wheelchair (or my bald patch)’ would be another. ‘Don’t assume you know about a disabled person’s challenges, hidden or not’? I dunno, my brain’s foggy today. But you can’t see that…