My favorite response to this week’s announcement of my Parkinson’s diagnosis came from one of my siblings, who said “First of all, it’s homophobic for this to happen during Pride month.” I don’t care much about Pride, which is currently little more than a soulless corporate celebration of a fictionalized account of Stonewall, but that made me laugh.
After being fairly tight-lipped with others about this year’s neurology appointments, Crankenstein and I decided to rip the bandage off once the diagnosis was confirmed. Summer and fall are usually packed with social activities and people are going to notice there’s something ‘off’ about me, even if they can’t quite put their finger on it. I’d rather get the word out now than encounter awkwardness then.
So far we’ve told my immediate family, Crankenstein’s family and a few of our closest friends, a couple of whom knew we had an important appointment looming and reached out beforehand to wish us luck. (The breakdown of how the appointment went is over at Cranky Lesbian.) It didn’t make the room spin, as telling my parents I was gay once did, but it was fairly grim. And, as with our marriage proposal, there was some crying I didn’t see coming.
As a preface I should recall an exchange I had with Crankenstein shortly after my immediate response to levodopa. She looked stricken and I asked her something like “Are you OK? You don’t seem OK,” and she spun and stared at me.
“I’m not OK,” she answered. “Are you OK? Do you realize you probably have a serious neurodegenerative condition?”
Yes, I did.
Was I supposed to rail against it? Whatever was happening didn’t need my permission, it was reality whether I liked it or not. This is where I differ from patients who only become sick as adults. From the age of three onward, I knew that what I wanted counted for nothing. Unless it’s something 100% preventable, and few things are, disease doesn’t slide you a release form to sign. It doesn’t ask “Hey, how we doing over there? This comfortable for you?”
I was just about the only person in my orbit who didn’t cry over the P-word this week. My best friend probably didn’t cry, either; we were equally resigned to this outcome. But Crankenstein has cried quite a bit, even though she also saw it coming. My in-laws cried. My parents cried. I think at least one of my siblings did, too. They’re afraid about the future and my parents are additionally upset because they feel responsible for my health issues. “It’s been one thing after another your whole life,” my dad said miserably.
Strangely, it was my in-laws I dreaded telling the most. I made a promise in front of them and everyone else at our wedding to take care of Crankenstein for the rest of my life. Now it felt like I was saying “Oops. So about that…” This is the aspect of illness that makes me feel like a failure. When there are problems in our marriage, one or both of us is typically at fault — and we can work together to fix it and move on. Parkinson’s is something different. We can’t stop it from doing whatever it wants, whenever it wants, regardless of our unity.
Then there’s the issue Crankenstein is struggling with, which is what if it’s worse than Parkinson’s? My doctor was blunt about the possibility of atypical parkinsonism, which wouldn’t be good. Fortunately, my age makes that less likely. The timeline of my sleep issues is also more consistent with YOPD than faster-moving alternatives. But there are a couple things about my symptoms that are odd, including the spasmodic torticollis and variety of tremors. Crankenstein knows that and it’s why she’s worried.
All of which is to say, coming out with Parkinson’s was more emotionally fraught in my particular case than coming out as gay. But, like all liberations, including the one chronicled in my favorite coming-out song, the Pet Shop Boys’ “Was It Worth It?”, it will make life easier in the long run.