FROM THE DRAFT POSTS FILE – 6/30/14
Waiting since June 30, 2014:
You fear getting worse. Because you can. Get worse.
And when writing is a marginal activity already, getting worse can be the snowflake that sets off the avalanche.
When I was young and able – a status not all people who are disabled can claim – I thought I could handle ANYTHING that Life tossed at me.
I was me – I’d figure out a way. Somehow. Eventually. And I always seemed to. I had a brain!
Now that the only way out is death – which is, I hope, still not close – I am facing the trauma of becoming even more disabled, more dependent on other people, less able to care for myself.
Frankly, it scares the hell out of me.
I fear losing even more of my mind. Now, if the planets are aligned, and I have done everything correctly, I get to live in the simulacrum of the mind I used to have – quick-witted and opinionated and so-often right – for at least a little while every day, or to feel it there, right beyond my fingertips if I take that nap, stop leaving the house so many times in a week, get to bed early: it’s there, it hasn’t gone completely, and I had it yesterday, maybe today, perhaps tomorrow.
I have already told my husband to put me in an Alzheimer’s/dementia facility if my mind goes – I don’t want his tender care, watching over me, stuck with that version of me. My mother and my grandmother sank into that hole, and it isn’t pretty – what if I got CFS because I am somehow genetically weak? And have already passed it on to my kids – the older two without knowing, and the third, the girl, after I was sick?
That way lies madness.
We all have SOMETHING wrong with us.
And it’s only going to get WORSE.
The happy seniors hiking in the mountains are in the minority: statistics tell me that if I live to 85 (I planned to live to 115), my chances of dementia are 50%.
On top of this unhappy state of affairs (and I have to my credit only one thing: I’ve never asked Why me, Lord?), I have been dealing, for a number of years, with the inability to walk properly – and here I thought it was ‘ONE disability to a customer.’ And it’s getting worse.
Actually, no – if part of you doesn’t work perfectly, if part of you is ‘disabled’ – it has a tendency to put other parts of you at bigger strain, and to make you more likely to get something else. Plus the statistics are exactly the same for you for anything unrelated to your disability as it is for other people: there’s no reason to think having ‘gotten’ your disability, you can now breathe free: people with one thing can be gifted with another unrelated one just fine (CFS and back problems do not usually go together, though possibly less exercise meant less fitness, which led to more susceptibility to back problems, or earlier, or…).
So why do I write about this potentially depressing subject?
You know the answer: because I’m that weird thing called a writer, and that’s how I get my jollies. No, really, I’m compelled to write down – anything that floats through my head. To get it out of there, of course, out where I can beat it with a stick (if you do that while it’s IN your head, there are problems).
There. I feel a bit better. Thanks. Thought you might like to know.
PS I speak only for myself – THAT I’ve learned. Finally.
PPS Going for that delayed nap I should have taken much earlier, but I couldn’t make the decision to, because, well, I’m over the age of consent and resent like heck that my mind needs frequent naps to work at all. Plus – oh, joy – the sheets finally came out of the dryer, and I always nap better on clean sheets. (Note to self – try to remember that, will you?)
PPPS Relentlessly dragging myself back from the brink.
2018: Still here, still writing.
And note I finally published in late 2015.