Dearest Readers, rest your minds, I am not there yet.
Today is rainy and soggy. The ground is thawing out in our Spring Thaw, which is a prelude to actual Mud Season. I grew up mostly in New England where there is a time of year called Mud Season, generally starting the end of February and going on and off through March. It’s a beastly time because everything from horses to tractors–not to mention cars and pickup trucks–gets bogged down in the mud. You can’t get any “purchase” (traction) because under the foot-and-a-half of mud is the frost line from the winter, which will stay frozen even into May, as any New England gravedigger will tell you.
What this weather means for me is misery. My hands hurt. My hips hurt. My neck is even now packed in pillows so I don’t forget and move it. Et cetera, ad nauseam. Oh and my asthma is suffocating me. Go away, damn it, and let me just LIVE!!!
I saw my orthopedist this morning for another cortisone shot into my right shoulder. Unlike last time, when the needle slid in so easily I didn’t even feel it, he had to do quite a bit of wudging around till he was able to get the needle into the joint. It hurt.
I remarked on this, in a casual tone, like this: “Fuck a duck, Doc, what the hell are trying to do to me???”
Actually I did not frame it in those terms, more because I know that all 6’5″ 300 lb of him are made of good nature and kindness–he and his saintly wife have, on top of their own eight children, adopted eight more, all of them older children who needed a good home. Even if he wasn’t on the short list for sainthood I would still try to maintain a modicum of dignity and say something more like, “Sonofabitch, Doc, that hurts!”
He grinned and mentioned casually that I am certainly going to need that shoulder operated on at some point, as the joint is proliferating with calcium deposits that will need to be “scraped off” (oh, I don’t like the sound of that!) so they don’t tear up the muscles.
Here my vision goes blank and all I can see is my father lumbering along with his elbows stuck out to the sides like a chimpanzee, because both of his shoulders had frozen up….eventually becoming bone-on-bone. He was literally stuck, couldn’t do anything with his hands–and he was a ceramic artist. Hell on Earth. And it didn’t stop there. The arthritis ate his spine, just like it’s been slowly but surely eating mine since the 1980’s.
I had emergency surgery on my neck in 1987 for a ruptured disc that was pressing on my spinal cord. Over the next 3 years I ruptured 4 more. The spine surgeons proposed installing steel rods on either side of mine spine–no thanks! I’m a dancer, a horse-and-dog trainer, a hiker, an aspiring Yogini. A rigid spine does not suit my lifestyle. So I spent 12 months in a Minerva Jacket, which is a hard plastic shell that the brace shop guy molded directly to my Stockinet encased torso, from just below the armpits to just above the groin, so that I could kind of sit. It had Velcro fasteners in front. I was to be encased in this walking tomb for 23 3/4 hours a day–with 15 minutes off to bathe. I admit that I had to take the damn thing off at night. Nobody could sleep with that thing cutting into your skin no matter how many layers of cast padding, etc., they fixed up for me to try to make it more comfortable. I even coaxed the brace shop guy (“You have a perfect hourglass figure…! He crooned, while I was immobilized in plaster yet again…stupid sod, I thought, only worse) into punching hundreds of 1 cm holes in the thing when it got to be summer and I was overheating in it.
Yah. I spent that entire year standing up 120 hours a week–my work week–because the tension on my spine from sitting down sent the nerve pain all the way into my feet, and all the way into my hands. But I soldiered on. I refused to let the pain stop me. I was young, and had the iron will that sustains my people.
Look, I follow a lot of people who have it much worse than I do. Much, much worse. And they keep right on living, kvetching now and then as is their right.
But I am staring into the face of a dilemma, which is: I can’t work if I can’t look down.
Say what?
I can’t work if I can’t look down. Not at my regular streams of income, at any rate.
I had to give up practicing regular medicine, not exclusively because of my brain, which wasn’t doing so well either but got right-side-up very quickly once I got the proper diagnosis and the proper meds, but mostly because my hands gave out due to whatever it is that is eating away at my connective tissue.
So I relied upon my acupuncture training. Palpating meridians and slipping needles into the right places takes no strength at all. But damn it, the last few treatments I’ve done, I swear I’ve squawked as much as my client! I can’t look down without incurring an acute, unremitting ache that spreads into my shoulders and down my arms. Nerve pain.
Writing. I don’t sell much yet, but then I haven’t made much of an effort. I get going with writing and at some point my hands seize up and won’t work at all. I am experimenting with Dragon Dictate. It is a pain in the arse, but many people swear by it (I swear at it, cliches be damned!). I’m starting a proofreading and copyediting business. That should be a good income stream, if I can market it successfully. There must be a way to mark-up copy using Dragon or something, right? At least I can get my computer at eye level. God, I can’t stop thinking about Frida Kalho.
Money. At the moment I’m fine. I made one single good investment in my life, which sustains me now. That stream of income goes away the moment I turn 65, if I make it that far. I’m socking away as much as I can, but one little bit of extra expense can throw me seriously in the hole. It’s unsustainable. I have to find another way of supporting myself.
This is where the equations meet. I cannot live as an impoverished cripple. Please do not play the “Oh, no, you’re going to be just fine” game. I get that enough from people I live around.
The truth is, I am not and will not be fine. I have two progressive diseases, and if one doesn’t kill me, the other will make my life a living hell, just as it did to my father.
Dad didn’t want to live like that either, but he got taken by surprise. It was as if he woke up one morning mostly paralyzed. He was too bunged up to even take his own life! So he lived another 5 years in unrelenting pain, totally dependent on the kindness (or unkindness, as the case often was) of others.
When we were alone he would ask me, “How much would it take?” He was referring to his insulin: how much would it take, to take him out of his misery? I could not, would not tell him. He would smile sadly, saying “I know you can’t tell me.” And we would change the subject.
Gentle readers, there will come a time when those two lines intersect: the downward spiral of my health and productivity, and the linear decline of my ability to sustain myself with food, shelter, medicines, and everything else one needs.
No. I do not want to enter a nursing facility. Neither do I want to be dependent on others, which is convenient because there ARE no others to be dependent upon.
I do not want to be locked into a crippled body the way my father was, until he died an excruciating death, screaming out his last hours on earth through blood-filled lungs.
I pray that I will know the right moment. I pray even more that if there is a Deity, that he/she/it will take me out of this life before I have to make that tough decision.
Pray with me now, dear readers.
Pray that I get to dance at my son’s wedding.
Pray that I get to hold my first grandchild.
Pray that I get to have a sweet, gentle kiss of Death, and go Home before I have to make that tough decision.
Frida’s last diary entry, the night before her not-entirely-accidental death, went something like this: “I hope my end is joyful, and I hope to God never to return.”