Gifted: On Parkinson’s, Poison, and Perception
The 16th century Swiss physician, alchemist and all-around polymathic freakshow Theophrastus Bombastus von Honenheim, better known as Paracelsus, famously said “Alle Ding sind Gift; allein die Dosis macht, dass ein Ding kein Gift ist.” For those of you who don’t speak Renaissance Swiss-German either, that roughly means “Everything is poison; it just depends on the dose.”
Can we just sit for a sec with one of the most disconcerting false cognates ever? The German word for poison is “Gift.” Did you grow up being told you were “gifted?” We say it about people who do well in school, or excel at a sport; people who have a knack for drawing faces or a parrotlike ability to mimic accents.
But even when you ignore its creepy German twin, a label of “gifted” also suggests an ability they didn’t earn. It’s a weirdly undermining compliment, one that simultaneously elevates and dismisses. Do some people have trait-level, inborn abilities that others don’t? Of course. Does that mean you’re cutting in some cosmic line because you were born with perfect pitch or a facility with math? Our “gifts” are meaningless if we do not cultivate them; talents are tools we have to learn to use, and develop with dedication and practice. And—and please trust me on this—there is no “gift” the universe can bestow that it cannot take away at any time. Your looks. Your singing voice. Your mind.
It’s not your fault that you can’t read my mind, and it’s not your fault that you don’t understand Parkinson’s disease—believe me, even people who have it don’t totally understand it. I’ll even say it’s not your “fault” when you look at me and instantly assume I’m drunk. On a good day, I might be able to extend that grace even when you are the front desk person at a neurologist’s office completely indifferent and unresponsive as I choke on meds, not even offering a glass of water. Sensitivity isn’t expected, but what happened to basic courtesy and basic concern for clients who already suffer enough? I don’t have many good days right now, and sometimes when I feel abused by folks who don’t bother to consider what I’m going through, I still get resentful. You’ll find me choking back my ugly-cry as able-bodied people add “hysterical” or “crazy” or “neurotic” to the list of things they’ve decided are actually wrong with me. Roll out the psych jargon! Turn everyone into monoliths and caricatures! Bipolar, Borderline, OCD, PTSD- spin the roulette! How about labeling anyone who struggles differently as “toxic” and cutting them off? Your shrink will be so proud.
The Age of the Armchair Pathologizer has not been good for any of us. For people like me, it’s especially poisonous. It’s a brain disease— by all means, call me “crazy.” As if I don’t spend half my waking hours wondering in terror where that line is! I never know when I’ll get gifted a few random hours of normalcy where I can walk and talk at an average speed, drive somewhere, see a friend, sing an 80s song at a karaoke bar—and when it does happen I never know how long to expect it to hang around. I never know if today’s going to be one of those days when my brain will decide to break up with my limbs, my bladder, or my vocal cords.
People with disabilities are discarded everywhere in this society. In nursing homes and medical offices. In public spaces and classrooms and workplaces. Shunned or tokenized or ignored- but too rarely seen. People with non-obvious disabilities can have it even worse in some cases: paraplegia is not a joke, but people understand what it is when they see it. (I had my shoulder in a sling once, and it was awesome! People held doors open for me and said “Oh, that looks like a bummer, are you in pain?”) Neurological illnesses that manifest unpredictably, like Parkinson’s or MS (not to mention shadowy syndromes without diagnoses or fatigue conditions) get pathologized in seriously sinister and ragingly unfair ways.
And I’m starting to think Parkinson’s is special even among those. Not “the worst condition,” or uniquely victimizing (trust me, this is not a competition). But as this progresses, I’m getting the distinct sense that Parkinson’s might have a unique “energy signature” that causes it to attract projections the way Harry Potter attracted dementors. This might partially account for Joy Milne’s odd ability to smell it with absolute certainty on people before they’ve been diagnosed (talk about a “gift”).
You’re glaring at me because I seem drunk? I’m sorry your mom was an addict. You’re convinced I’m “playing the victim card?” I’m sorry you were victimized. You think I’m scaring your kids? I’m sorry that some adult terrified you at some point. You’re somehow upset that I have the gall to share that I have Parkinson’s when I am clearly too young for that to be my real problem? Man, I am sorry you are having trouble accepting your mortality. I swear I am becoming a human Rorschach blot. Tell me what you think is going on with me and I bet I can tell you exactly where your unhealed wound is.
I was recently with a friend and fellow recipient of a malfunctioning Deep Brain Stimulator. This guy is a big, strapping, good looking, witty, fast-processing Boston Irishman. His DBS has damaged his speech center, so he speaks slowly and stutteringly now. Very rough for someone who used to be the life of the party and the king of the quip! At the coffee shop where we met I sat at another table to witness his experience. I asked him to attempt to start rudimentary conversations with three strangers. One bent down really close to his face and shouted, “I CANNOT UNDERSTAND YOU DO YOU NEED HELP?” Another looked terrified, backed away, muttering “Sorry I’m late to meet someone.” The third seemed interested but got impatient within two minutes and just walked away.
How do we fix this? How do we gauge for each template, each individual? Sometimes I imagine staggering around town wearing a shirt that says “I’m not drunk, butthead—it’s Parkinson’s” and then I imagine everyone else with their shirts: Lay off, Bitch, I’m a High Functioning Sociopath! It’s a LIMB DIFFERENCE, not a “birth defect!” or “Neurodivergent not high; come at me bro!” Cue the Ugly-Cry and shame monster. What would your “shirt” communicate? This isn’t about labels, but labels are explicitly in the way. Why do I need to explain to you that just because you think I’m on meth doesn’t mean I am? I don’t. I’m “bitchy” because you’re triggered by the fact that my facial expression appears frozen? Wrong lens. I’m actually pretty easygoing and friendly—I just look like Severus Snape during off times because when my meds wear off parts of my face become paralyzed. How (or why) would I explain these random misfortunes, to anyone? Everyone is preoccupied with their own “stuff” anyway.
And marching into every room with “I have a disability so don’t fuck with me,” would be ridiculous. First—dude, everyone has a “disability.” Seriously. Some disabilities are more obvious and some people are more aware of their own limitations than others. But also? Disabled people don’t need more defense mechanisms and we definitely don’t want to spend all our time able-splaining the various idiocies and injustices of our condition to every person we meet. We want to live while we can, as fully as we can. You know: just like everyone else.
Isolation kills. And diseases and disorders that lock you in your own mind (or your own shower—that’s a fun one, when the hot water runs out at the same time as your dopamine agonist!) are unbelievably isolating. I don’t want people to feel like this. As a person, I also do not want to feel like this. It’s poison. But none of us can demand others become more compassionate— we don’t control them, and they likely have no awareness their lens of perception is warped.
Here’s the big cosmic kicker: we are given expanded perception by suffering. I wish that weren’t true, but it’s as human as the way our eyeballs function. We don’t learn much from ease or success or privilege or winning,
and winning,
with extra winning.
We learn from falling on our asses. From suffering. From pain. From rejection. I still have a vivid memory of being about eight, playing with the cigarette lighter in my Dad’s Pacer right after he warned me not to touch it. The coil went from red hot to normal-looking so fast—did it really cool off that fast? “I must jam my finger into it to find out!” Desperately I hid the blister from my parents so they wouldn’t know how stupid I’d been. But here’s the thing: I don’t remember any of the times I could have gotten burned but didn’t. Those taught me nothing.
If you’re also being dismantled by Parkinson’s, you probably take an amount of medication that gives you the creeps when you think about it. Some days I look at all the piles of pills and just feel horrified- how have these side effects changed my personality? Am I experiencing psychosis or hyper-vigilance, or just intuition? How have I not literally poisoned myself? It looks like too much for one body to metabolize because it is! The medications I need to move lose efficacy and I’m out of time. Allein die Dosis macht dass ein Ding kein Gift ist. Parkinson’s isn’t a “gift” I’d wish on anyone, but I will bow down right now and admit it has made me smarter. It has made me more empathetic. It has made me more eager to see beyond surfaces and not make assumptions based on my own egotistical bullshit.
Unlike time, my egotistical bullshit is one thing I haven’t run out of! Suffering is a tough teacher, but it’s one of those teachers you never forget. And to bring this back to etymology, I’ll note that the synonym for “suffering” is passion, and that “compassion” means “suffering together.” I know the antidote to the poison of isolation is buried somewhere in what I just said. How we ensure everyone gets a little more of that, I don’t know. But I’m not going to stop trying to figure it out. And I’m going to keep using unusual techniques to translate this experience into something other people can understand. Because even if science cracks the code on Parkinson’s, we’re all sitting ducks for something that will gift us with a kind of pain very few people can really understand.
Heather Kennedy (aka Kathleen Kiddo) is a current WPC Parkinson Ambassador. She presented at the WPC 2019 and has served as a WPC Blogger Partner. She is a motivational speaker, writer, visual artist, and mother of two. After many years of misdiagnosis and a disorienting amount of chaos, she was finally diagnosed with Parkinson’s in 2012. She has been interviewed by Michaela Pereira on the on the Los Angeles-based HLN/CNN network show MichaeLA and starred in several Parkinson’s videos which she co-produced with Anders M. Leines, including “Dating With Parkinson’s” and “Anger.” She is part of the faculty of the WPC 2023 in Barcelona, Spain.
Ideas and opinions expressed in this post reflect that of the author solely. They do not reflect the opinions or positions of the World Parkinson Coalition®