No, I’ve not actually gone fishing, but I’m taking the night off (or rather, I’d planned to; as you’ll see, that went by the wayside) and wanted to offer some sort of proof of life after yesterday’s coughfest. I’ll return tomorrow with the tale of my shiny new SSDI denial and why I’m still conflicted about applying — and appealing — at all. It’ll be a familiar tale to some of you, and I’m aware my grandfather was similarly ambivalent about filing for disability as his MS worsened.
He didn’t like to talk much about his illness and I respected that enough not to question him about it, even once I was old enough to wonder about his experience. I wish he’d been more comfortable discussing it, if not with me than with my parents or other relatives who could’ve shared his thoughts with the rest of us. Adapting to disability is difficult for anyone, but there’s something about it that seems uniquely injurious to male pride. My grandfather was his family’s sole provider and enjoyed far more personal freedom than my grandma ever did; to lose it so early in middle age must’ve been quite humbling.
The last time I remember Papa working was when I was two or three, which means I don’t remember it at all. What I recall are photos of, and stories about, traveling by RV from St. Louis to Tulsa with my parents and aunt and her then-husband (there’ve been a few) to visit my grandparents, who’d just moved for his job. The trip was mostly memorable because my uncle was smoking again and my mom and aunt complained about it the whole drive there and back.
Grandma and Papa were miserable away from their family and returned home soon enough, marital problems in tow. At the time of my maiden IBD hospitalization in 1986, they were newly separated. It wasn’t their first brush with divorce, which dated back to the late ’50s or early ’60s, but it was their last: my illness reunited them and shortly thereafter Papa’s MS, unresponsive to the limited treatments of the day, claimed his independence.
Grandma took care of him for the rest of his life, partly out of love and mostly out of duty. It’s something I’ve given a lot of thought to over the past year, fearful of similarly burdening Crankenstein. There’s an ebb and flow to marriage (or any lengthy relationship of any consequence) and ours had been in retreat for a while, even before the YOPD curveball hit us right in the face. We’re still young, despite our parents’ protestations, and I don’t want to rob Crankenstein of years she could spend rebuilding and enjoying her life if that’s where things are heading anyway.*
This is where she’d point out that I’ve chosen again and again, from the earliest days of our relationship, to stay put and take care of her when, in her opinion, anyone else would’ve left. She’s right that I’m still here, but it hasn’t always been easy and I’ve sometimes wondered if I’m not resigning myself to my grandmother’s fate by prioritizing Crankenstein’s care and comfort above my own sanity or self-respect.
A critical difference, of course, is that Papa wouldn’t have been Grandma’s Florence Nightingale if their roles had been reversed; he would’ve skedaddled or hired a caregiver — preferably one who was attractive and single. (I’m not joking, unfortunately. He was a wonderful grandpa but a lousy husband.) Crankenstein won’t run from Parkinson’s, just like she didn’t run from Crohn’s and everything that accompanies it. But if there comes a time when her love for me has died, I don’t want her to stick around solely out of obligation.
If this seems like a depressing way to end a post, it isn’t: most committed couples discuss these morbid prospects. We’ve also encouraged each other to date and find love again if one of us is unlucky enough to be afflicted with early dementia, even if we remain married on paper, and to do likewise if widowed.** But neither of us thought these topics might be relevant so soon, which makes me feel guilty — just like filing for SSDI, as I’ll explain tomorrow.
* By my parents’ calculations, I was older at birth than they are now. My mother-in-law would say the same of Crankenstein, who recalls the time she skipped a party in undergrad to study by herself, prompting her mom to angrily snap “Why do you hate fun?”
** It used to bother me that my ex was very opposed to all of that, and only years later did I realize why: it reminded me of my mother. For decades my mom said that if she died first, she didn’t want my dad to date again. She’s relaxed her stance in recent years but my father steadfastly claims he’d remain true to her memory. I’m doubtful of that because he’s like a puppy in his need for companionship, but also, practically speaking, how would he carry on when she’s all that stands between him and certain death? He’d never seek help in an emergency, medical or otherwise, without a wife. Heck, he’d probably never see a doctor again in his life, even for routine care. He wouldn’t know how to pay bills or clean the house or find anything but the basics in a grocery store, either, but that would only kill him if he drove through Burger King too often, as he would if left unsupervised.