Many times over the past few months, I’ve wondered “What if the doctor’s wrong? What if I’m perfectly fine?” Intellectually, I know the neurologist is almost certainly right. It’s more complicated emotionally, as I’ve been reminded lately by some irritating developments.
Take this morning, for example. The witching hour seems to start around 4:30 am — that’s when I’ve been waking up, briefly but repeatedly, to tremors in my left hand, which usually only clenches when I’m asleep. It’s not my standard tremor, where my hand shakes but my fingers don’t touch. This is more conventionally Parkinsonian, with my thumb and index finger making contact with each other. I couldn’t say for sure that it’s a pill-rolling tremor, since the room is dark and my arm is under blankets and I’m in and out of sleep, but the odds are in favor of that.*
Then there’s the late-night rigidity. Normally I’m in bed early due to Crankenstein’s schedule. Three times in recent weeks I’ve stayed downstairs much later than usual, until 11:30 pm or so, while working on my computer. My final dose of levodopa is taken before bed, so it’s on my bedside table. When I take it two or three hours late, my left leg’s so rigid that it’s hard to bend it to get off the couch and walk upstairs.
Crankenstein delivered another blow today after mentioning she hasn’t slept well this week: “You’re doing another weird thing when you’re asleep,” she said. “You’re quietly laughing.” That’s not new, but she’d forgotten what I’d told her before: when my ex first reported my odd nocturnal leg movements, she complained not only about that — and my wild jerking and waking up startled for no reason — but about giggling as I fell asleep.**
It’s good that Crankenstein said something; it’s the kind of information my doctor asks for at every appointment. But again I feel dazed and disappointed by the reminder that it wasn’t just IBD and arthritis that were too much for my former partner to handle graciously or with a modicum of maturity back then — I had freakin’ Parkinson’s. It’s stupid, I know, but accepting that is as painful as the (pretty damn painful) disease itself. And I resent that it makes my enduring love for her seem more grotesque than it already did when she was only callous about my struggles with IBD.
There are other things I’ve heard recently, from Crankenstein and Middle Sister, that also landed like punches. While complaining that coworkers without medical backgrounds sometimes cheerfully ask “Is your wife better now?”, Crankenstein bitterly ranted, “I want to say ‘No, she isn’t better. You don’t get better with Parkinson’s. I watch her get worse every day.'” It’s untrue that my condition noticeably worsens every day, but I get the general point and understand why she’s upset. I feel the same when well-meaning friends and relatives ask clueless questions about her depression or eating disorder.
Last night, as Middle Sister vented about other goings-on, she said she’s never wanted to be a caregiver. Now she’s worried that in a few short years she’ll have to take care of our parents and Felix, and possibly Youngest Sister if she proceeds with a divorce. “I never realized it, but I always thought you’d handle a lot of that. And now with the Parkinson’s…” she trailed off, like she felt bad for thinking it. Aware of another fear, one she was too polite to express, I assured her that I neither want nor expect any of my siblings to provide care for me one day.
She sounded relieved. For a moment I was, too; pleased to have given her something, however small, in lieu of being able to confidently say “Don’t worry about the future, I’ll take care of it.”
Note: I’m not about to throw myself off a bridge or anything, even if the last two or three posts could be construed as Debbie Downer material. That’s all part of life and I spend more time laughing than crying each day. And on the rare occasion I do cry it’s because of tennis or sad movies or frustration, not abject misery.
* Many websites would have you believe that Parkinson’s tremors cease during sleep, but it varies by patient and can happen during certain stages of sleep.
** Supposedly I sometimes murmured between giggles. Crankenstein joked that Ex probably thought I was cheating in my sleep and that’s why she was so mad. Crazy as it sounds, she’s probably right.