Hemiparesis, muscle weakness or partial loss of control affecting only one side of the body, and neuropathy, damage affecting motion, sensation, or autonomic function, are two possible effects of a stroke (or TBI, MS, cerebral palsy, or brain tumor). Both are on my list, which I promise to post soon.
To be clear, they both suck. My left arm by default curls up pretty close to my center line (conveniently covering my genitals when I change), though I have a special left armrest for my wheelchair. My left arm can biceps curl itself, unweighted, seven whole times before failure. It’s really awkward when anyone tries to hand me two items. Only the right hand comes close to being fully functional but weak. The left leg is crazy weak, though I can use it to stand, squat, walk, or wall sit in the pool with minimal balance support from Sam. Just today, I walked 20 feet with just my rollator and no exoskeleton and did three wall sits, two for over two minutes. These are the limits of my life. I need help to transfer from my power chair to the toilet, bed, or shower chair. That’s it. Those are pretty much the only places I have been the past 32 months.
It’s not enough to be weak; my nerves are otherwise broken. My left leg, left arm, and right foot never feel right. Always a little bit numb, sometimes tingling, and constant pain hovering at 1-3 on a scale of ten. The best I ever get is less pain, or pain more localized than broadspread. Never no pain. Never. Drying off after a shower or swimming usually hurts a bit more. It’s nearly impossible to dry my feet and left arm without rubbing them a little bit too hard. Some people are skilled and observant and barely or rarely hurt me: my trainer Sam, massage therapist Shannon, and nurse George are the first three that popped into mind.
Tinnitus sucks, and I can’t make it stop being annoying. One of my ENTs describes tinnitus as “you hallucinating something to hear.” As I may have mentioned, your brain is both highly creative and immensely naive. Tinnitus occurs in older people and people who have had vestibular schwannoma. Sign me up. But brains are both creative and stupid. My brain has crafted this brilliant hallucination in my deaf ear. Can’t really hear there, but I do get the benefits of hallucinations. Usually, it’s just a tone, and I have gotten pretty good at ignoring the tone. The past few weeks, my right deaf ear, which I will remind you is 100% deaf, has been hallucinating grackles. If you don’t know grackles, lucky you. They sound like this. This sound is much harder to ignore. It sucks.
But none of that matters. It isn’t what I control about my existence; very little is. I can only control my reaction to it. I keep falling back to Camus’ absurdity, the conflict between human desire for warmth and meaning placed against a cold and uncaring universe. Hemiparesis, neuropathy, and tinnitus, quite frankly don’t give a rat’s hindquarters about me. They bludgeon on doing their thing no matter what I want. That leaves my place as the choice between living with it as just what happens or spending emotional energy and angst wishing it didn’t.
That’s hard. It may be among the hardest things for us to do. The hardest to learn. Our whole history has evolved us to attribute emotion to causes, as if the universe actually cares about us. It doesn’t. It won’t. Choosing this path brings to mind the old phrase I used to hear from a mentor, “Don’t piss into the wind and complain that it’s raining.”
But learn to make that choice and let go of regrets. I’ve never been big on regrets, having claimed I never have done anything I regretted, only things I’ve learned not to do again.
You’ve got your hemiparesis, neuropathy, or tinnitus. Find out what it is and try letting it go.
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