Editing last night’s entry this morning reminded me that lately I’ve been inserting Word B, which comes after Word A, in front of it as well; this turns phrases like “screwed up” into typos like “up screwed up.” It doesn’t happen incessantly but it’s a daily occurrence in text messages, blog posts, or other online communications. Normally when I reverse the order of words, as happens regularly in editing, it occurs within a sentence where either order is acceptable but one phrasing sounds more mellifluous; that isn’t the case with B, A, B, which is more of a mechanical glitch.
Aphasia is one of my worst nightmares and I wouldn’t want to live without language (which, to paraphrase Cries & Whispers gives me so much). Crankenstein knows this but it’s one more thing I haven’t discussed with my hopelessly dysfunctional family; until we have a better idea of whether these aberrations are more about sleep deprivation than anything nefarious, what’s the point? Even if we had a clear answer tomorrow, I wouldn’t be in any rush to share my problems, a resolve that was strengthened earlier this week when I learned that Tom, of all people, had been using my diagnosis as a way to court attention and sympathy from women prior to her split.
Reading some of what she said was interesting; almost as soon as soon we knew it was PD she represented it as if I already had one foot in the grave. (Unless it’s atypical, which she knows is unlikely, that shouldn’t be the case.) She also said it would “turn [me] into a vegetable,” which isn’t true of YOPD. Tom isn’t an idiot, though she plays one on TV; this was mostly about looking for drama. Maybe if I’d received a more exotic diagnosis it would’ve filled that void in her life and some of this recent messiness could’ve been avoided.
One of the worst things about being sick as a kid is the awareness of how it affects your family. Once I was old enough to develop a nascent understanding of what my grandparents’ reconciliation had meant for them as individuals, I felt a profound but completely impotent sense of regret that my illness played a unifying role. When my parents bitterly argued about which of them had caused my disease, and when Felix resentfully used my medical absences as reasons why he shouldn’t have to attend school, I wished I could disappear into thin air.
Wasn’t it enough to be trapped in a body ravaged by such a uniquely destructive and embarrassing condition? I wanted an escape from knowing it hurt other people, too. Time put more distance between my family and my health: Tom was an infant during my surgeries and Youngest Sister grew up knowing little about any of it. The past caught up to all of us in 2016 and 2017, changing my relationship with my parents and frightening my sisters. After Humira ended the worst flare I’d had in decades, I felt a sense of closure: IBD and I would be together for the rest of my life, but my family’s tortured relationship with my illness was no longer my problem — we’d seen it through to its Freddy’s Dead: The Final Nightmare denouement.
Who the hell greenlit this unnecessary PD sequel? My family is bigger and older now but no less avoidant. This time it was Tom who struggled the most, angsty and panicked about possibly inheriting responsibilities she always assumed I’d shoulder. I heard this straight from the horse’s mouth, when she had a freakout on the phone about how she didn’t ever want to be a caregiver for anyone, much less our parents and Felix. If we had this conversation now she’d either deny the call ever happened or deny its implications, and probably call me foolish or arrogant for suggesting that Parkinson’s contributed in any way to her premature midlife crisis. But the two are clearly related.
Not long afterward, she began making personal decisions designed to minimize or eliminate what little genuine responsibility and accountability she’d previously accepted for herself and others.* She also chose as her new girlfriend an adult with the emotional insight of a toddler, who immediately encouraged Tom to make the terms and conditions of her closest relationships so wildly inappropriate and unacceptable to anyone with a modicum of sanity or propriety that it would leave her with no one but New Girlfriend and our easily manipulated mom. These are things Tom wanted to do anyway, it’s not like Parkinson’s gave her the idea. She was searching for a reason to give herself permission to do something she knew was wrong, and catastrophizing about my neurological disease and how it might limit her future freedom provided it.
At some point she’ll lose interest in this nonsense and need someone or something else to blame. She’ll pin it on New Girlfriend if that relationship ends poorly, but she’ll also blame it on my diagnosis — not because she agrees with anything I just wrote but because it will yield the most sympathy from our mom and from Tom’s ex. None of this has happened yet, and it might not happen for years to come, but it already annoys me. It annoys me because Tom is an adult, unlike Felix (who was a child when he dragged my illness into everything), and because our parents are older but apparently no wiser. And I’m putting this on the record now just in case Tom’s fears are realized and I’m either not here or not capable of having this conversation with them in the future.**
If they agree that Tom didn’t know how to handle the thought of her big sister having a scary disease and it helped send her into a downward spiral, they should know it was their job to step up and say something about it while she was actively destroying her life and placing unreasonable demands on them. Handing her a fire extinguisher once she’s reduced it all to ash didn’t help her at all — it only helped them not piss her off as the blaze raged all around them.
* I realize this sounds harsh but it’s true; Tom won’t even commit to a phone plan. She told me more than once that she never wanted to be a parent because she felt there was a strong possibility she’d eventually dislike her kid and not want anything to do with them.
** There are posts I know Crankenstein would revisit in my absence and others I hope would bring comfort to Former Partner, who will regret our most recent exchange if it’s the last we ever have. Many of the memories I share here are intended to help my family, especially my nieces and nephew(s), understand me better.^ Sometimes there’s simply something I want to introduce to the record, like this, which has troubled me since I learned more about how Tom framed my illness to sympathetic ears.
^ My brother-in-law has been teasing his kids lately by telling them they’re going to have a brother named Garrett. We have no idea why he chose that name, or whether he’s expecting his vasectomy to fail, but I’m leaving room for the possibility that he might eventually will Garrett into existence.