As a single woman I’ve learned a few things. I don’t particularly like not having a primary partner to share this wild and fascinating human experience with, but I don’t mind being “alone” so much. No one is snoring or stealing the covers, or pulling the dirtiest trick of them all… gasp!...leaving only the appearance of a stocked fridge with just a few drops of milk at the bottom of the carton. I can let things slide, but if my hypothetical mate messes with the sacred morning coffee ritual - we might be headed for couple’s therapy!
Appearances can be deceiving. I was married for almost twenty years when Parkinson’s barged in to wreak havoc on our family of four. I didn’t realize how easy our life was - we had two kids, a mortgage, pets, the various after school activities. LIfe was busy and had all the ups and downs of any “normal” family - whatever that means.
So while Parkinson’s arrival wasn’t our only challenge, my blood-curdling screams probably didn’t help matters improve. Becoming a single mom - losing my partner as I gained Parkinson’s was a double blindside. We’ve all heard Pat Benetar, and if love is a battlefield, then Parkinson’s is guerrilla warfare. Does Parkinson’s shoot first and ask questions later, or the other way around? It’s all fun and games til the weaponry comes out! Sharp and quick, pick your poison.
I don’t actually own a gun at this time, but I do have a Hatori Hanzo sword and a yellow jumpsuit with a black stripe- from Halloween. I like the symbolism. And it makes me feel somewhat safe knowing that a sword is nearby - even though my hands may freeze if I ever want to slice someone sideways.
The point is that I’ve had to learn to be with myself and take a closer look at how neurology affects others. My neurology. Managing a chronic condition that also affects motor symptoms is beyond exhausting, but that is not the worst part. That’s my pain. My challenge.
It’s more difficult to witness loved ones who are negatively affected by side effects or symptoms of this uninvited and ubiquitous guest. Parkinson’s doesn’t just interrupt my plans and my demolishing coping mechanisms. Navigating life with Parkinson’s as I try to lessen its impact on my kids - is like re-learning how to live each week. Each Sunday night I go to bed resolved to a fresh start - and to do better next week. It’s Groundhog week over and over again.
In this book, Pema talks about getting comfortable with groundlessness: Comfortable with Uncertainty . I’ve not mastered this idea, but that’s why they call it practice.
I’ve also learned how to become. I’m constantly in a state of becoming unapologetically and completely cool with myself as I am now… not someday, when I am better, faster, and stronger. I try to stay in the moment, though without the illuminating reflections and added joys of a life partner (for now). This process includes but is not limited to a certain amount of confusion, fear and humiliation at my own hands. I also enjoy hearty doses of self-depreciating humor, and realize my levels of nonsense are no worse and only different from anyone else’s.
With no one to blame, I delve into self-reflection. While uncomfortable, it’s a gift that keeps on giving. It breeds wholeness, confidence and an indescribable clarity. To say that love has expanded my heart while simultaneously humbling and shredding me would be an understatement. Love is transformative and magical. But loving yourself is the foundation.
On the practical side, it is difficult to love without the growth of expectations. As we get more intimate in a relationship there is a tendency to assume our partner is capable of reading our cue cards. Master of the obvious moment: expectations ruin a good party. Right now my main expectation is one of silly humor. As in, “Nobody knows what the hell is going on!”or, “Let’s do a bit of sociologic experimentation while on dopamine agonists!”
Online sites where hungry hearts and heated loins swipe left or right in search of someone to hold on to don’t interest me at this time. To start, how the bleep am I supposed to explain YOPD to the gen pop and why would anyone try to hide such a thing? That might veer into the territory of false advertising, like using photos from twenty years ago and might go something like this:
“Surprise! I really am my age, an age that you didn’t expect since you have been salivating over images from a bathing suit competition at summer camp, when I was 18. I’m also missing a few teeth and have a goiter. Is it cool that dog needs to be on my lap at all times. She is my comfort animal for the Methadone Recovery Program.”
Sure I believe in soulmates, but in these times of text break ups, ghosting and fast love, it’s highly unlikely to find a mate “for life”. In my experience the definition of a soulmate is someone shake things up and expose us, not to ride off into a perfect sunset living happily ever after. Oh BAE, don’t we make a pretty picture! (Add magical harp music and a scrolly font that says “The End”!)
One of my favorite bassists has a song called LOYALTY
Personal preferences of physical attributes aside, the common denominators for a mate might also include authentic kindness, awareness, open-mindedness and a keen observation of humanity in all it’s ugliness and startling beauty. Add sensitivity, humor… and depth (have I gone too far, is this out of your depth?) Oh, by the way I happen to have a touch of the Parkinson’s you’ll have to navigate if you aim to kiss me. It’ just a little brain disease! I’m not fading away just yet… I only need moderate medical care… it could be worse… you can’t catch it... Hey, why are you running away?
If a partner doesn’t “get” your Parkinson’s symptoms, you may as well stand in the middle of nowhere shouting different languages into the wind. So how might a person living with a disease effectively communicate their experience in a constantly changing situation, so that partners and caregivers understand? It is a lot to ask of someone, and if we cannot communicate our honest experience of reality, things can get hectic. Sometimes we don’t know...until we know.
“One thorn of experience is worth a whole wilderness of warning.” - James Russell Lowell
Long-term intimate relationships require seeing and understanding ourselves and another with the masks off, but everything does not have to be so heavy and serious. We have little time to agonize over trivialities, but we can have a little fun. As far as I’m concerned, if you can’t laugh, you can’t survive any relationship. Whether you have Parkinson’s or not. A successful relationship requires some joy and laughter. And the ability to handle whatever life dumps over our dreamy heads.
The video “Ad” below comes from the brilliant mind of Anders M. Leines, an advocate who has dedicated most of his life to transforming perceptions of PD and neurologic conditions. He does this with his trademark wit and an extreme talent for moving pictures to reach viewers in deeply personal ways. Our work together came about from a conversation and a single question. We were setting up the lights for a different photoshoot when Anders grabbed his camera and asked, “How do you feel about living with Parkinson’s?” I continued answering his questions without any script and he recorded the answers.
We share the philosophy that we have no time to wallow in self-pity and a goal of having a little fun at our own expense. Want to play a little game? I’ve penned a series of writings on Relationships and Parkinson’s. You can find one soon on The Davis Phinney Foundation’s blog with links on www.kathleenkiddo.com . They cover a variety of perspectives, including that of the partner who does not have personal experience with chronic diseases and may not be particularly interested in learning how to navigate the complexities of yours. It's disorienting to be foisted into an unfamiliar role of caregiver, especially for those who feel anxious about the endless unknowns. Please put your chinstraps on- I’d prefer to skip introductions next time and go directly to the heart of each matter. Think of it organized chaos that might include live music and a glass of wine. Cheers!
Welcome to Dating with Parkinson’s!