I've seen you before

You say you're done. With your job, the piles of bills and debts, your fair-weather friends, increasingly heavy burdens, the weather, and me. You've reached your limit! You aren’t as subtle or cool as you pretend, so everyone can hear your impotent yelp. You don’t need anything! So go. Just go. Go hunt your own meaning and purpose. There must be a sale on self-help books somewhere. 

I want you to see my eyes when I remind you that you too, are both predator and victim. You and the latest crop of showponies you call friends mistake my generosity for other things, conjured or whispered and I don’t have time for repeats or further rejection of reality. Besides, you’re off by miles, galaxies, and lifetimes. I’ve seen it all before, but offer mercy anyway. What is the word for, “No we can’t hang out, but I sincerely wish you peace and love for the rest of your days”? Perhaps something like this.

Build your temples and altars, then light them all on fire. There is sacred to be found in the profane, and the ordinary. You have not been forsaken, your people are not abandoning you with intention. I did not leave when you broke our agreement, I’m just over here ducking for cover and playing witness, but there is nothing left to resist, or argue over.

This does not mean you are not adored or valued, but humans are known to disappoint, or disappear. I may be a disappointment to you but I’m still here. For reasons we cannot parse, our current condition may excite or repel others into a retelling or dissolution of their own truth.

Not to diminish your experience, nor adorn your dark night of the soul with glittering accessories or lipgloss. You can't pretty up an existential crisis.

This is going to hurt.

If what you expect of me is another glorious phrase borrowed from the wise ones who came before us, playing the eternal optimist or jester for your court, then we've never met. Excuse me while I locate a plunger for the overflow. I can be just like you- full of $hit.

It is hellish, what you must endure. I speak with authority only because I've been forced to become intimate with suffering and grief. I know a few things about suffering, and silver linings too. Parkinson’s has been both degenerative and regenerative. (More on this later.)

I’ve had trouble believing anyone reassuring victims of various abuses and the persecuted that justice will prevail. It feels like the bad guys are winning. Not only winning, but kicking us all in the proverbial nuts on the way to the highest office where they can insert lopsided policy that serves only them and theirs. How can only a few own the air above as well as the land and sea below, when paradise was a gift to all?

I don't see any lines telling us where to stand, do you? 

The reason blood continues pumping through my veins and not spilling into an early grave is LOVE. Love felt, observed, given... lived. I swallow all the pills they sell, but the drugs don't work. My medicine has nothing to do with pharmaceuticals, or MDs or PhDs or letting everyone know how to be enlightened.

I refuse to bumpersticker this to make you feel better, because there is no way out. Ask Johnathan Briley, or Bal Kishan, or Jill Wieber Lens about choices from the comfort of your home, then let’s talk. We must remain acutely aware that not everyone is having the same experience. After criticizing the use of an infamous rapper as a reason to support educational opportunities from my sweaty keyboard, a wise woman once reminded me of this fact, and I’ve never forgotten it. 

Hold this child, this part of you that died. It's not your fault. We show up under circumstances beyond our control because we have no choice.

My Father used to say, "I'd sit upon a carpet tack and ride around the world and back, for you,” and I knew he would have done this and more, because he loved me completely, unconditionally. He did this without expecting anything in return, apart from an occasional hug and an awareness that son of God, or not, Jesus was right. Indeed, worship or word without works is dead. 

Though there is no substitute for unconditional love, we can learn to give it even if we've never received it. There is an infinite supply of love in our existence, so we can only imagine what is beyond our knowing.

And though we hurt one another, notice how I'm still here. Not as a masochist or another impossibly slow learner, but because I've seen your sweet side. It’s too late for pretending to be hard and impenetrable, because in spite of your efforts to cover it up, I can see you.  

I don't have to believe in us together to believe in you.

You may ask not why am I here but what might I do to alleviate some small portion of this universal suffering? THIS is how you can gather the strength to marine crawl out of your hidden-hole cave of misery. Time has no obligation to be kind, but in my shortened stint on Earth, I can. 

Do you have any idea how many decent human beings it took to revive me this week? Yesterday I woke with bitterness on my tongue, muttering about death and taxes, yet by the graces of many, I am revived. Support is not always what we may think it is or should be, and arrives just in time from unexpected sources! 

So let's roll...come on it's getting late!  Maybe all you can do is wiggle your toe but there is no getting around or under or avoiding this one. If I can do this, so can you. 

I keep looking around for an adult. Surely, there must be someone here with answers or ideas on how to escape the worst parts of being human? Shall I consult another spiritual advisor? Where do we go and what do we do,now that Dad is gone and Mom is so far away?

If you still feel lost or despondent, here is how to begin:

1.   Listen to that small voice that says get up.

2.  Take your coat off and give it to someone who needs it.

3.  Ask where you might be most useful.

4.  Ask (directly and clearly and specifically) for help and guidance.

5.  Stay in your body and in each moment, even if it hurts.

6.  Find a touchstone and stop drinking so much poison. 

7.   Breathe deeply, then repeat after me, "Human being."

8. Go. Love. Now.

Happy Birthday!

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.

Everything is fine!

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!

Yanis Marshall, those heels are fierce!

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.

Macarthur Park

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!