Marjory Frauts (marjory) wrote,
Marjory Frauts
marjory

LJ Idol 9 - Week 14 - Confessions from the Chair

1.

I have a wheelchair.

I hate the blighter for a number of reasons. I hate what it represents, the ignominy of weakness and otherness. I hate that it is so cumbersome and foxed by garbage such as too narrow doorways, too steep inclines, irregularities in surfaces. I hate the way that at the times I need it most, I am least able to cope with manoeuvring the stupid thing, of even getting in and out of it.

I love... No. I gratefully appreciate that it makes things possible for me and that during the grotty times it gives me the option to actually shift my carcass, even if it is only across the room. In relative safety too.

Multiple Sclerosis, since this apparently must be part of my life's journey, has taken me to some strange places. It took me to the point where I had to overcome my distaste and self-disgust and get a stupid,goddam, life and sanity saving wheelchair. On one occasion it took me and my trusty chariot to an extended stay in an old folks' home.

2.

Technically speaking, I was put into 'intermediate care', which happened to take place in an old folks' home. I delighted in telling people that I was in rehab, which sounded far more rakish. Effectively it was rehabilitation, as after a big relapse and two weeks in hospital, it was deemed that I should spend at least five weeks in a facility, working with OTs and physios.

My biggest worry at the outset was that I would not make sufficient progress in that time. Then what would happen to me? If I couldn't get back on my hind legs, I imagined there might be an appropriately disreputable glue factory nearby. Then I was worried about the other residents. Time on the neuro ward had refamiliarised me with the tragedy of senile dementia, the incessant, wearing horror of it. Plenty of terrified and confused old ladies in hospital.

There was all of that, but more too.

3.

I rather did not enjoy my time there, but I did endeavour to make the best of it. That's the simultaneously good and bad part of having a chronic condition, the equally cursed and blessed aspect of it all. With mine, I can spend months pottering along quite comfortably, making progress even, and then pffft. Something will take place in my central nervous system which will set me back. I say 'pfft' rather than BLAMMO! as the process of relapse tends to be a slow, seeping, insidiously wet fart of an affair rather than a dramatic thunderbolt. Stuff goes wrong and it takes a while for me to realise that my body has contrived to hand me my (its!) arse with both hands again. All I can do is get my head around having to deal with it all. Girding my loins and gritting my teeth, doing so repeatedly each time I relapse and malfunction and looking at it all as a necessary investment, it's a skill set on its own. I do not get to feel like Sisyphus each time it happens, not for long anyway. I do however have my figurative drawer of big girl panties to pull on.

I spent part of each day with the physiotherapists, practicing balance exercises and learning to climb stairs again. Naturally, I was terrified and tearful to begin with, as it was all so hard, particularly with buckling legs and battered confidence. I was scared to even walk across the hall at the start. I didn't want to fall and relied upon my chair of horrors where possible.

For most of the time, I was left to my own devices. Gloomy hours were spent watching series on the laptop, watching the clock for mealtimes. These gave way to watching my MS exercise DVD and doggedly attempting the routines. Then my self-appointed task of walking took over. Each hour, I heaved myself out of my chair and took a walk – 5 yards at first, then 10, then 15 and ultimately 25. Not a vast distance at all, but I was scared of overstepping the mark and losing the benefit to my joints and muscles. I did this every day from 8 in the morning until 10 o'clock at night, my swaying legs keeping pace with the clicking of my sticks, becoming faster and more certain as time passed. By the end, I could get myself to the far end of the corridor where there was a dayroom and even down the ramp to the garden if I so chose. Never reliably or actually quickly, but it worked. Moreover, knowing that my legs could sometimes be forced to work without killing me, I made rapid progress with the stairs going from 3 to 5 to 18 all at once.

Here is the gift of MS: If I can remember that I am a dickhead long enough to try to avoid thinking and behaving like one, I can let myself progress in a myriad ways. Better a positive, purposeful dickhead than the passive kind.

What I think I am trying to say is that horrible things happen to people all of the time. Without necessarily accepting everything, we often have to look at what the situation is in the aftermath and accept it for what it is. 'If you don't like something, change it. If you can't change it, change your attitude.' Maya Angelou said, wisely if harshly.

I'm currently sitting back at the bottom of the MS slope and I intellectually know what I must do in order to escape my wheelchair again. My confession of my sins from this vantage point is that I must remember and realise my official 'attitude' and actually gird my darn, spasming loins anew and in practice. It has worked before, so...

Onwards and upwards!
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