A few years ago I got this advice in a workshop and I immediately thought of my friend who’d just been admitted to a long term care home after a stroke. In minutes, his life was no longer his own; unable to function, he was completely dependent on an institution to provide everything for him.
It’s a terrifying thought, especially for an independent gal like myself who lives with a progressive incurable disabling disease. Ever since my diagnosis, this spectre has haunted my thoughts. On those days where I have trouble with my legs and have issues getting into the shower, it trots right in to my mind and makes itself at home, picking its teeth and farting loudly.
Of course it immediately occurs to me that both of those things are not acceptable in long term care homes. I mean, you are under constant supervision. How does one pass wind? I immediately envision me scootering around to abandoned areas of the home to let go, only to be discovered by disapproving residents.
A friend of mine has just had to arrange this sort of transfer for her mother and the amount of work she has to do gives me pause as well. I restrain myself from immediately calling 1-800 got junk and having them take away everything, just in case. I have a horror of the kids going through my precious items and judging me, laughing at what I chose to keep, those indecent bras that I like because they are comfortable but which really should never be seen, love letters from men they never met, odd books from friends, half knit socks…
It doesn’t help that I’ve just heard that the retirement home bleating of on-site health care is just this, bleating. If you are lucky, you might have an on-site nurse, but generally it can be anything from a PSW to a retired surgeon resident who maybe can see you at coffee.
This seems unpromising.
So off I go to the gym, hoping to forestall the eventual. Truth is, we’re all, after a certain point, just one fall from being incarcerated. But I persist in trying to postpone it as long as possible.
I admit the thought of daily meals prepared for me can seem tempting. And someone to do laundry. Maybe someone to chat with over meals.
But, (she thinks), that would mean retiring those bras…
Instead, I’ll write stories about captives in nursing homes, subjected to attacks and robberies, under the grip of malevolent administrators. Maybe I’ll make them win most of the time.
It’ll make me feel better, anyway…
I have a lot of friends who are dealing with chronic illness or the illness of loved ones or bereavement or even the loss of pets. So when I saw this article, it called to me: 
a bit.
“Everything you see I owe to Spaghetti.” and “Spaghetti can be eaten most successfully if you inhale it like a vacuum cleaner.” 
Words – I love them. I even love the great huge 
hard to find a pleasant use for the word, unless maybe in describing a cake or a towel, but otherwise, moist is tied to sweat, swe
aty dark places, mouldering bread, dampness where none should be.
At present, the old creativity-inducer seems positively mimsy.
grace and charm throughout some tumultuous years. I’ve always been suspicious of inherited positions and wealth – it’s so cynical of me because of course, I inherited privilege as well – a healthy upbringing, sort of, good food, education, support. I suspect people feel the same way about me as I do about the royals.
My ex and I dined out on the disastrous story that was our wedding day for years. It was horrible from stem to stern and at the time I was so proud that I held it all together. I’ve always been proud of holding it all together. It’s a thing.
displays of affection) that I went without a kiss for 23 years, except in “certain situations”? I was raised in a home scarce in physical affection, and I hungered for it like an abandoned puppy. By the time my marriage ended, I was looking at men thirstily on the street, wondering, if I asked them politely, if they’d kiss me, just once. I went to my dentist just to feel his hands on my face. I 
remember my doctor touching my shoulder once, briefly, when I got my diagnosis of MS. I feel every touch every man has given me. God knows there have been few enough of them. I fell in love at the first man who was kind to me, who gentled me. Sadly, he was the only fellow I’ve met in all the years since I left my ex that was trustworthy with me. And he was lying to someone else.
It just about killed me, those years of affection desert. It’s taken me years to admit that I am a touch junkie (thus the needle felting in soft fuzzy wool, the craving for milk chocolate.) It’s taken me longer to understand that love requires regular feeding and care, regular laughter, regular kisses, regular touches, regular attention.
I’ve been reading a lot of research results lately and I’m starting to get disturbed. There are millions and millions of little mice going the way of all good research animals to help us figure out MS, Alzheimer’s, Parkinson’s, and lots and lots of other disease entities.
necessarily changing the length of the life of these mice. We’re just making them miserable for all their lives.
I have a feeling of being in transition, of being in between the not anymore and the not yet. I’ve been chewing on it ever since I saw my dear friend incarcerated in his body from a stroke, and struggling in a nursing home.
I’m sensing a change coming, though, like a fresh wind. Maybe it’s the birds doing their still-chilly spring romantic dance. Maybe it’s the fact that sometimes, sometimes, I feel a bit like I can play the ukulele. Maybe it’s the repetitive strain injury from stabbing wool for hours…or the look of my still not right bedroom, covered in wool and still-waiting-to-be-unpacked necklaces and clothes.
Christmas present. So I wrote them a story, about a unicorn and a girl making choices at a fork in the road. It was so dreadfully heavy with allegory I’m surprised my parents could lift it, let alone read it, but never mind, I can do a good preaching when I set my mind to it. They cried. My English teacher read it and told me it was trash.
In the story, the Unicorn was there to help the girl along the rockier path she chose. It was meant to symbolize the coming of adulthood and the need to take on responsibilities, as it were. It had capital-B Bears in it who were my parents, who were ahead of me on this treacly road, who provided support from afar; it provided sympathy for what they’d lost by taking on adult responsibilities.
using words or needles and thread or wool or both.
I’ve been feeling foggy, myself. Lots going on, various family and non-family tragedies and worries, enough to keep my brain spinning unproductively in the mist. Toss in another school shooting, more horribleness about the fascist-leaning land to the south, and the fog deepens. A good friend of mine writes satire and humour about the Trump government – I’ve told him I can’t read it anymore. I used to keep track of the lies and foolishness through twitter and news sites; I can’t anymore.
Back when I was younger and full of piss and vinegar, I used to take this on (that’s me on the right, a rare thing). I wrote letters, went to protests, was active in party politics. I’d love to do that again, but I realize I can’t – my brain doesn’t hold onto facts anymore (if it ever could) and my arguments slide away into inappropriate confessions and parries and thrusts with blunt weapons. I embarrass myself. It’s truly awful. As I get older I keep my mouth closed more and more…or regret speaking more and more!
to others whose brains can formulate arguments and make sense. They need to keep their noses to the grindstone, their foot on the pedal, to blow away the fog of fatigue. I can’t anymore.
So in I plunged, as it were. I’m a public health nurse by background, so a bit middle class and vanilla and of course have no experience in the darker arts of intimacy, so suffice to say it has been an education for me (and my long-suffering friends).
I’m in a mood. I get in a mood whenever my MS takes a little bit more of me away.
elf to grieve to let things go. Well, I don’t know how to grieve. I’ve never learned. I can fake it, yes I can, I can look moodily out into the middle distance, etc, etc, but grieve? Nope. Not in my makeup, not anymore. Too much has gone by ungrieved I have a bloody ice jam in there and the surroundings will likely be flooded if I chip away at things. So it just piles up in huge lumpy blocks of coldness…
DA's Ephemera and Etceteras 