It’s not here yet. I’m not there yet. But it’s getting closer. I have to stay alert, lest it overtake me like it did to Dad, and leave me too crippled to decide my own fate.
That’s what happened to Dad. It happened over a period of years. I could see it because I lived far away, and when came to visit every 3 or 4 months, I could see the changes. But one day, or so it seems, he was frozen in thin air. His body had just frozen. He could walk, for a while, with a cane. His hands would not cooperate enough to operate a wheelchair, so he shuffled it around using his feet. It was good exercise, I thought.
He tried to keep writing–he was a wonderful man of letters–but his pinched nerves refused to work his hands. It cost his soul a lot, not to be able to write his memoirs. (No, he wouldn’t do all the alternative things to physical writing.)
Then one day his legs stopped working. I think he had a stroke. He had lots of them, and caused him to have difficulty speaking, kind of like Moses, only different.
These few words about Dad serve as a preface for what I am about to tell you.
I have been having excruciating pain in my neck, due to arthritic vertebrae. The holes in your spine where your nerves branch off your spinal cord and end up moving everything and feeling pain and whatnot–those holes that belong to me are getting calcium deposits on them, which is squishing and poking into the nerves in my neck. Plus, the spinal canal (you know, the canal your spinal cord runs in–helpful, ain’t I) in my neck is getting narrowed, squishing the spinal cord itself. I guess that’s why my arms ache and tingle all the time.
Today I drove the hour-and-a-half to see a nurse practitioner at the spine clinic where I get things that so far have not helped, like an injection of steroid stuff into my neck (that was fun) to medicines that allow me to sleep for three days at a time between doses. Who needs pain meds when you’re fucking asleep?
For the past month or so my neck has been killing me to the point where bending over to pick up something on the floor gives me a jolt of pain, 8-9, sometimes 10 on a 1 to 10 pain scale. It’s all I can do to hurry over to the bed and pack myself in pillows so I can’t move. After a while the pain lets up, but not all the way–enough so I can get up and take some acetaminophen. I don’t do opiates like Percocet, because they make me itch. Every once in a while if nothing is helping–immobilization, hot packs, arnica oil, CBD oil–I’ll take one of my carefully hoarded Tramadol, a semi-synthetic opiate that relieves my pain just down to the barely tolerable level without making me dizzy or itchy.
So I saw the nurse practitioner at the spine clinic, and unlike the actual doctor of the clinic, the nurse practitioner had some very good and practical suggestions, like physical therapy with massage and electrostimulation, and a hardshell neck brace for when I have to do anything.
Since she seemed to know what she is doing, I asked her point-blank: what is the natural history of my disease? Us medical people call the usual course of an illness to be its “natural history.” I like that, because I have always loved Nature, and have been an avid Naturist–no. no, I mean Naturalist–all of my life. So I asked her about the natural history of my disease, and she said “Not good.”
“What do you mean, “not good”?
Well there was a point where surgery–
“Surgery? What, they take a Dremmel (an all-purpose engraving and grinding tool) and ream out the foramina (holes where the nerves pass though)?”
Yes, in fact.
“How good is the surgery? What’s the success rate?”
She shakes her head. Not good at all, she says. About like lower back surgery…….which stinks.
But, she says, you might consider it when your hands get too numb to work.
My whole body, including my mind and soul, was numb as I walked out to the parking lot. “When,” she had said. Not if. When. I kind of thought that’s what’s in store. My left arm, the one where the nerves are more severely damaged, “goes to sleep” quite a lot, and it aches and tingles pretty much all of the time. It’s definitely progressing.
And then we come to my right shoulder. The end of my collarbone that attaches to another bone in the shoulder is so gnarly with arthritis that my last steroid shot not only did nothing, but the difficulty of getting the needle into the joint (because the joint is almost closed up) has made the whole thing worse. I have constant pain and limited mobility, and probably will end up having the end of that bone sawed off, which is supposed to restore mobility.
I have firmly and completely decided that I am not, God willing, going to let myself go the route my father went, completely dependent on others for years. And unlike Dad, I don’t even have anyone to care for me should I be suddenly a body with arms that don’t work. I would be in a nursing home until I died.
I’m watching very carefully for that tipping point, the one between independence and dependence, and praying it doesn’t sneak up on me.
As one of my Physical Medicine professors used to say–he was in a wheelchair due to MS–everyone is TAB–Temporarily Able Bodied. And so it is, with me, anyway.
I used to love to swing an axe and split wood all day long, or take on an unruly horse, change a tire on my 3/4 ton Dodge Cummins Diesel truck…no more of that for me. I had to trade the truck in for an easy-to-drive car. My hands only hold out for so long at the keyboard before they seize up and I have to stop. I can’t play my banjo anymore.
This is me playing my 1897 Fairbanks & Coles fretless banjo in 2005:
Life is getting less and less attractive to this formerly physically active person. I spend virtually all of my time in my recliner, which is the only place my body doesn’t scream at me. Hell, my place has not been vacuumed for over a year, because I can’t look down or look up or lift anything over two pounds.
It’s getting closer. I have to be careful not to miss the tipping point.