Though I regularly speak with my family, there are certain subjects we avoid. My parents know about the ‘Niles’ situation and the stress it has caused in my marriage, and they’re aware of long-simmering tensions over Crankenstein’s stinginess with her free time and her general aversion to helping around the house. They know I’ve not been too happy over the last few years (and that I’m hardly a saint myself), but I suspect they’d attribute that to the Parkinson’s — one of the topics I try to sidestep.*
How you’re supposed to discuss Parkinson’s with people who are largely unfamiliar with it and rarely spend time in your physical presence, I’ve not yet figured out. When my parents or Felix ask how I’m doing, I answer “Fine” and redirect the subject. Pre-Zoloft, I wasn’t about to tell them “I’m crying a lot more than usual and don’t know why.” I didn’t even tell my doctor that, I just acknowledged my mood wasn’t great and that my wife wanted me to try an antidepressant.
Middle Sister sometimes tries to check in on how I’m doing, and how Crankenstein’s handling things, and I judiciously edit my responses to omit details like “We’ve had conversations about ‘dying with dignity’ and what I’d do if unlikely scenarios like X, Y or Z were to occur.” Is it really worth putting something like that on their radar for no reason? Besides, Crankenstein and I have always had conversations like that, they just involved different sorts of hypotheticals pre-Parkinson’s.**
Tonight I opened the door a crack by mentioning to my mom and sisters that a 54-minute PD documentary premiered on PBS last night. It’s called Matter of Mind: My Parkinson’s and currently streams at PBS.org; it follows three patients, at least two of whom have YOPD, and the decisions they make about treatment as their diseases progress. While there’s a chance viewers might not understand that we don’t all share the same symptoms or experience them identically, it’s probably helpful for them to see that there’s more to it than just tremors (which not everyone has, anyway).
Crankenstein and I watched it this evening via the free PBS app on Roku, and paused it a couple times to discuss things like DBS, a procedure my doctor mentions early and often to her patients in an effort to inject a bit of hope into glum discussions about the future. My mom and Middle Sister said they’d check it out, and if they do it might foster some conversation. But I’m not sure how much it will appeal to them, seeing as they unapologetically prefer trashy reality shows and dating competitions. No one gets into slap-fights or spreads chlamydia throughout the land on PBS, unless Masterpiece Theater‘s adapted Moll Flanders or Thomas Hardy again.
* Things got extra-quiet around this particular topic after my parents witnessed one of my choking episodes during a rare get-together last year. It was probably due more to dystonia than anything else, but it was more intense than what they’re used to and they were visibly spooked.
** One of Crankenstein’s non-goopy reasons for wanting to get married was that she trusts me more than her parents to respect her end-of-life wishes in worst-case medical scenarios.