They used to call this condition St. Vitus’ Dance…
They used to call this condition St. Vitus’ Dance…
Someone left the cake out in the rain.
Managing a chronic, incurable, and progressive brain disease exhausts most of my time and energy. The worst part is not my pain, but how my challenges impact those around me. In ways I could not have imagined, and certainly never intended, loved ones are inconvenienced and negatively impacted. Anyone with high expectations will be let down. By the time I arrive at an event, I’ve burned dwindling resources on prep and have less energy than a sloth taking a nap.
The probability of upsetting loved ones rises as pressure increases. Many PwP override fatigue in an effort to avoid scenarios that affect others, but we cannot fight gravity. Living with any chronic condition can make even the best intentions appear self-absorbed and, in my case let’s throw in a hearty serving of scattered, with a side of forgetful. Yummy, right? It’s just icing on the cake!
Once I forgot to pick up a birthday cake on time and kinda missed a friend’s actual birthday. Understandably, she let me (and everyone else) know how disappointed she was. I’d been expected to arrive earlier and my slowness and disorganization was taken personally. The pressure of these expectations caused my body to freeze. It was a valuable lesson in self-care and allowing others to have their own trip.
If I enjoyed healthy neurology and adequate dopamine, this would not have happened. She meant so much to me and I suffered shame inside, too. I appear relatively healthy, and some of my intimates don’t realize the scope of my condition. It is my job (not anyone else’s) to communicate my immediate experience as clearly as possible as things are shifting. Nobody can read invisible cue cards or hear silent screams for help. Hiding my symptoms and feelings became a full-time improvisational gig, and Meryl Streep might be proud of my improvisational acting.
I remember standing frozen in bustling downtown with the cake in my shaking hands, awkwardly cradling the phone to one ear as we argued about schedules and priorities. While I was trying hard to keep my cool (yeah, no), I was distracted by an acute pain in my neck, on a day when nothing was working, with exception of my heart and tear ducts.
To start, I don’t go out in public unless my medication is working. What people who do not have direct experience with Parkinson’s fail to realize is its inherent unpredictability. I may have left the house feeling fine, but in another hour I might be tripping up a familiar walkway, then fumbling a ridiculous amount of time at every door for keys or the rearrangement of hair or a jacket. By the way, have you seen my wallet, and why is everyone staring?
Think of a neurologic disease as a werewolf taking over- only it doesn’t happen on a full moon’s cue, it’s random. Ask someone with dystonia how they are getting along, and you’ll always get a different answer.
After arguing and failing to explain to my Birthday Friend why I was not where she wanted me to be at the right time, I did the only thing I could muster the energy for- I dumped this beautifully-crafted and overpriced delicacy into the nearest trash can and turned the phone off. I didn’t have the heart to look down and see her name crumbling and melting into the trash. I loved her better than that, but failed again to meet deadlines normal folks and moms and most citizens of our city seem to manage so flawlessly.
I envy the “perfect” moms who are so proud that they can “do it all”, though we all know exactly what is going on just beyond the glimmering facade. Watch for the crack in her smile as those veneers are exposed. Listen to what she doesn’t say. Perfectionism is the slow path to fresh hell… and it’s boring.
It’s not hard for a person who was denied birthday celebrations by grandparents who feared “spoiling the child” to understand how it feels to feel disappointment from high expectations on your birthday. For her, this was more than a little faux paux- it was unforgivable. Her camp remains blissfully unaware of my real challenges saw it as rude, neglectful and crucified me.
Unfortunately, Parkinson’s is a honey badger and doesn’t care about your calendar or anyone else’s expectations - whether it is missing a birthday or a monumental event that requires your prompt attendance and attention. A neurologic condition forges on. Stress and rushing only feed Parkinson’s, until symptoms kick into high gear just in time for the big event. I have broken into hives in large crowds, and have been known to experience panic attacks on busy highways. Try telling your boss that you were late to work because you were on the side of the road sobbing and hyperventilating for no particular reason.
I enjoy challenging myself and getting out of my comfort zone. Last night it was live karaoke and tomorrow maybe I’ll storm an Embassy in my ‘Puck Farkinson’s’ shirt, demanding change. Not sure which embassy or what change I think I might facilitate, but darn it, I’ll try!
Cheers to dopamine!
For those of us with neurologic challenges, prepping for formal event requires anticipatory skills of a Jedi level. Heaven forbid we want to wear jewelry that requires clasps or favor heels. I had to say goodbye to that pair of Jimmy Choo Stilettos years ago. I give props to and am terrified watching these dancers dropping to the floor in unfathomably high heels!
It’s imperative we remain acutely aware of the toll our condition takes on our friends, intimates, and families. It’s important to to remember this in order to infuse deeper gratitude for the support we do receive. Regardless of the cause, chronic pain can change personalities and distract us from the abundance and beauty in our world.
Counting my blessings is keeping me quite busy. It’s a lot easier than dredging up times I felt abandoned or betrayed or just disappointed by the ones I presumed to know so well. At least I know it’s not personal, as capacity for tolerating the progressive pummeling of Parkinson’s symptoms may vary. Our loved ones aren’t just passively observing- it affects them too.
Surrounded by thoughtful and kind humans, I feel lifted and enjoy reserves that cannot be depleted. When I communicate clearly, they can hear me and know better how to respond. This exchange does not instantaneously occur in relationships, it takes time and practice - we teach each other. Yes, it requires a lot of work… and compassion. The latter must expand from within.
During off-times with this condition, the friends who took the time to get to know me still come around. I take the time to get to know them well too, and ask how I can support them. Any new friends have never seen me without the burden of chronic pain, but every one of us has burdens we carry in our bodies and memories. Just because I struggle does not mean that I can’t be helpful. It just means that my help may require flexibility, reminders and maybe a delivery service.
Everyone has their down times though, and for a PwP that means the body refuses to cooperate with basic movements required to move about in the world. I know too many in our communities who never leave their homes- it’s can be too exhausting and humiliating to dive in with the “normal” crowds.
An example of an off-time can be seen in Jasmine Sturr's video short on DBS where her movements are drastically changed by stimulating her brain. My medications and current health routine work similarly to keep me “on”, except when they don’t. I cannot anticipate when they will work well and when I’ll be out of luck. Off-times include brain fog and the inability to maintain a “normal” schedule, and this really bothers people who thrive on consistency and routine.
My relationships also tolerate my incessant need to dance and sing and move about. They also need to support my compulsive sharing about PD (and all neurologic conditions) even if they have no personal experience with neurologic disorders, beyond our connection. Sometimes I can’t even meet them halfway or focus on their immediate needs because I am overwhelmed managing basic life responsibilities.
“I need you to prep a meal for six and pick up my kids and two bottles of the vino they have at that one place without any parking in 30 minutes.”
Just NO. No can do. No to the no no no. Call a Lyft for them, AND me! I’ll be in my sweats.
PwP’s have so much going on under the surface, it is no wonder we even function half of the time. Forget your “normal” template, filled with great plans… for someone else. In relationships, we must maintain flexibility and humor.
Dude, I try.
Accepting new realities means it is probable that all who follow a strict schedule will be disappointed. I know my lack of organization and timing blunders hurt your feelings...but I’d rather anyone listening hear this: I am not capable all the time. Not on cue and in spite of my finest efforts. I am loads of fun, and happy to keep you laughing, but if you take common symptoms personally you’ll probably grow resentful, if not contemptuous.
I’m not being a jerk, I’m just struggling with brutal symptoms and side effects you probably don’t even notice. OK, well… sometimes I am being a jerk… but it's also true I am no longer capable of multitasking.
If my vibe ain't your cup o' tea, move along. I choose to enjoy quality relationships with people who have this thing called empathy.
When we don’t understand someone’s behavior we humans tend to project our evaluations, our fears and sometimes our own issues onto them- this includes armchair diagnoses, misunderstandings and almost comical levels of projection.
Although.. this disease is not easy to be around. Partners of PwP need support too… a lot of support! If they are being coached by people who do not know about brain disease, then you’ll hear them parroting phrases crafted only to protect themselves. That’s right, I became not a pleasure, but a THREAT for the Birthday Friend. THE threat. Banished. Denied. Bad. No cake for me!
Some days it’s a miracle that I’m standing upright and my teeth are brushed. Today my shoes match and I sing a song I barely know with the band in front of a packed club. My peeps know off-times are no reflection of my love and respect for them because my inner circle doesn't include insecure or judgey folks who take everything personally. Hey, that's MY job!
It started to rain after I dumped that pretty cake into the trash bin. I wandered aimlessly then slid into the car, covered my red swollen eyes with my daughter’s ridiculously large sunglasses, opened all the windows and blasted Donna Summer.
Special thanks to Jodi Smith, Editor Liz Eisinger, drummer Martin Garro, The AMAZING TALENT at Retro Junkie, and to Glen Campbell (who lost his life to Alzheimer's last year) for writing Can't You See (Marshall Tucker Band). I'll keep practicing!
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