An MS obeisance
I have had a busy week. I love busy weeks. When the MS was at its worst I could not permit myself the luxury. I’d feel good, plan too many meetings, too many social activities, and at some point my energy resources would run dry. It’s like walking upstairs and thinking there’s one more step than there is, putting weight on a foot in mid-air, and stumbling to catch yourself.
Now, I have much more energy. That I can fill my time with friendship and activities is a huge privilege I will not take for granted.
When things are this good my instinct is to fill my time. To seek out friendship and love. To do everything I can to bring myself closer to other people. To spend the time I have remaining deliberately. With MS constantly reminding me that my time is limited I find myself acting with urgency. I accept every invitation, flying into intimacy like a loving banshee, curling into affection like a stray cat.
Friendship, laughter, flirtation, kinship, all make me feel so alive. I rush from hug to hug, forgetting for as long as I can that I have this incurable disease. As though I can outrun it, as though if I just live hard enough I can live forever.
But MS always exacts a price.
My week ended with a long coffee with a new friend. It was a truly lovely day. We relaxed in a cafe with her dog playing with a nearby toddler, and we had pancakes and French toast and talked for hours.
I first felt trouble on my drive home. The slow corrosion of a strained nervous system. Nausea sliding inexorably into fatigue. I opened the window and turned down the heat in the car, hoping that my nerves might rest in the cold. But the nerves were strained beyond all recognition and I was possessed by the spasms, spasticity, fatigue and pain that plague all of my kin. I needed rest. Or a priest.
I got home and my wrecked neurological systems started to fail. Nausea pushed me to take deep breaths groaningly, like the last moments of recollection from a night overimbibing in the city. Moving became challenging in the way Squaredle tantalises my academic self-concept, appearing deceptively manageable before rug pulling my self-esteem. My hair trigger bladder even started to stare at me threateningly.
I rested. I waited. And I wet myself.
Such a rare thing, sudden and surprising. I stood to fold blankets and simply deposited my payload all over the living room floor like I was an airtanker flying low over a forest fire. I decried the apparent lack of incandescence belying my otherwise obvious heroism and cleaned myself up in the toilet.
And then it was sleepytime and as soon as I hit the mattress, insomnia. The disease temporarily thwarted my ability to fall asleep and after two cycles of my ‘insomnia management plan’ I finally started to sleep at around 6am.
When I overspend and allow myself to become indebted, the mob boss that is my scleroses always comes for payment with interest. And sometimes wants to break something important when he does just to teach me a lesson.
However, this organised crime syndicate is surprisingly open to alternative forms of payment, and so a negotiation frequently takes place between me and Al Capone as we find a way to pay that I can afford and that my monster can accept.
The MS is at its worst right now because I haven’t been keeping up my side of this bargain. The deal that “Scarbrain” and I have struck is one where the fatigue, the symptoms, remain manageable so long as I work out for an hour every day. This is known as an obeisance, an act of deference to the disease. It might sound a little fantastic, but my MS fatigue, insomnia, and pain are all responsive to exercise, and so working out is a way to literally keep them at bay. And if I fail to fulfil my end, the MS symptoms will take their payment out of my immobile ass.
And this is the MS mob. The debt always comes due.
Given that I work out in my wheelchair travelling 5k outside, if it is icy or wet the rims become slick and the chair becomes dangerous to use. I mean I'm ok while moving so long as I don't need to, you know, stop. So if the weather is badly inclement, as it has been, it can be difficult to get outside frequently enough to pay my obeisance.
I can get away with missing a day, two even, but with pouring rain I missed three in a row. And in the absence of my own offering, the MS took its toll from my soul instead.
When I’m paying I have to rest, I have to get back to where I was. So I cancel plans. I sit here, open a book, and wait. I do my best to quell my anxiety. I understand that rest is important, and that my lack of dependents permits me to rest in a way that many cannot. But I know my time is unpredictably limited and this is time I will not get back. A heavy toll indeed.
So the next day, tired, I push out into the cold morning dew, 5k ahead of me, fate’s contract carved into my essence. I know my end of this bargain. I know my obeisance to these gods. I board the Rocinante, put on my headphones, and glide into the sunrise.