It’s usually best to write with time for reflection.
I often feel like a foreign correspondent reporting from the front line of my own bedroom! The shells of multiple sclerosis (MS) explode within me, and I’m suddenly airlifted into new territory. It’s like being yanked from the street troubles in Belfast to the jungles of the Vietnamese conflict. (American, French, Japanese — take your pick!) A whole different set of complex issues need to be grasped and understood while struggling with your new injury.
The ol’ heat of battle lends immediacy to copy, but standing back — all right, sitting back — allows for analysis.
I was seething.
MS had finally taken away my ability to stand without help.
This might not sound like much, but it was soul-destroying. (OK, I don’t believe in souls, but try finding a better English term. “Angst” doesn’t cut it.) It was far worse than losing my ability to walk, which, toward the end, looked more like the tentative swaying of a parade-leading stilt walker who’d spent the night at the “Animal House” “Toga! Toga! Toga!” party.
In the days when I played wheelchair tennis, I could still walk a bit, unlike the majority of my comrades. But fatigue and lack of strength usually meant they helped me get into the building. Pushing my sports wheelchair ahead of me was a trifle laborious, especially when I occasionally had some 200 meters to negotiate. The speed humps in the car park acted as my own personal mountain range.
Once in, the others whizzed around. They were disabled, but their arm strength was consequently tremendous. There weren’t any cars — well, maybe not those with four-wheel drive — they couldn’t get into. No disabled toilet they couldn’t hoik themselves onto. There was no speed hump they couldn’t climb.
Standing allowed me to transfer to bed on my own, albeit with tools to hoik (I’ve never used that word before, but it’s proving invaluable) my legs up. I could also get onto the toilet. But only if my body gave me the time. (Increasingly it didn’t, but that is another story — maybe for next week?)
So, going to the toilet entailed:
I pushed my commode to my newly adapted wet room, which was easy with a powered chair. Then, half in the wet room with the door open, I stood myself up, pulled my nappy or (bravely, occasionally) underpants down, and did a half-turn to lower myself onto the commode.
I pushed my power chair back by controlling it with a grabber, then stood again using my power chair arms for support. I shuffled myself to the side, and I’d then be on the toilet. I used the grabber to push the power chair outside, then maneuvered my legs to the side and finally closed the door.
The toilet was only one or two inches higher than the commode. But it was becoming ridiculously insurmountable.
The one negative, besides the time involved, was that the adapted wet room’s entrance was now in the kitchen, so I’d be hoiking (like it?) my pants down with the door open!
If someone was cooking, they’d usually holler, “We’re not having sausage!”
My family is a riot!
Losing standing meant losing my last shreds of independence.
I couldn’t go to bed when I chose to. I couldn’t get up on my own. Worse, I could no longer transfer to my commode without help.
A toddler can happily climb onto the potty with a tad of training.
This was now a dream.
I didn’t think MS could still humiliate me!
I didn’t think MS could still make me humiliate those around me!
For a while there, I couldn’t wipe my own tail, which seems to be an accepted word here at Multiple Sclerosis News Today based on my previous column. Now, I’ve been reduced to pre-toddler status. Really, why not, bot-bot?
All of us were frazzled and frustrated.
I lost it one night and tore into my wife. Being told when to go to bed was practical, but reduced me to a tantrum!
I was in such a haze that I fortunately can’t remember what I said. I merely acutely remember the feeling.
Incredibly stupid, as I now totally relied on her.
Incredibly stupid, if you know my wife.
She’d also taken on feminist principles a long time ago — something that had been instilled in me by working in the radical press in my 20s.
As my body failed, so, too, my principles seemed to crumble.
Of course, I apologized.
Not because I needed her help. I was mortified.
I still am.
The front line can break you!
Note: Multiple Sclerosis 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 Multiple Sclerosis News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to multiple sclerosis.
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