Unedited. No time to ponder or fuss. An intro:
Do you really want to know what “this” feels like? You don’t have time for this mess!
Neither did I.
This cruel and univited guest is trampling the garden we’ve been cultivating together. The one I’ve been taking care of my whole life, the one I counted on for sustinence, and survival. Parkinson’s shows up without warning at inconvenient times, and stays too long, leaving suffering and stuggle in place of the skill and ease I used to take for granted.
Once, I wanted to be The Greatest. I thought we’d always be together… because LOVE… but naw…
You don’t know, until you know. Then you can’t unknow. It’s a good thing I’m only visiting the material world, with my body as temporary housing for infinite soul, because if this were progressing through infinity, hell might have a new meaning.
Often, I want to leave my body. Wouldn’t you?
Dystonia feels like sleep paralysis, with appendages curling up painfully. This is the only time I find myself relating to Roy Batty (Rutger Hauer) in Blade Runner. The rooftop scene, where he he puts a nail through his hand just to keep it open a bit longer...just to stay alive.
Hurry up now, you’re making everyone late, they’re pounding on the bathroom door and our ride is about to leave!
But... “I want more life…”
Dyskinesia feels like a puppet master is yanking me around in rocking, circular movements and there’s nothing I can do to stop it. It usually signals an abundance of meds, which causes my body to lurch about in manic jerking movements.
My dog thinks I’m playing, until the tears come. I don’t cry for me, I cry because it hurts people I love. Parkinson’s affects it’s host and impacts everyone in close range.
The ones who played at loving just leave. They will miss the richest part of this journey, and that is their choice. Either because they don’t want to see this, or because they don’t agree with how I’m managing the subtler phsychological symptoms and side effects. Strangers talk about differences instead of similarities, having no concept of what they are observing. No one can begin to see or understand, unless we find a way to communicate and educate.
Lord, make me a conduit. I promise to keep the channel clear and honest, even when it’s most uncomfortable.
Both symptoms I mention are painful and inconvenient, and though there are dozens more, I’ll spare you. It is the imposing mountain at my gate that concerns me. We have no time left for anything not rooted in truth. The curtain is being pulled back and we are forced to reckon with ALL that exists in humanity, whether we like it or not. I’m not waving and cheering for the parade, because what’s happening in the world theater is also disturbing.
What will be, will be is almost as maddening as “it is what it is", but it’s all I’ve got.
I do not believe there will be a cure or anything to stop the progression of Parkinson’s in my lifetime. The poison did it’s job, triggering a nightmare from my genetic template. It’s all related: well water, herbicide and pesticide exposure, viruses, accidents, surgeries, the reported but ignored contamination in areas I’ve lived, trauma...more trauma. In part, yes, I blame human ignorance, and obvious greed. We were given paradise and have contaminated it beyond measure.
My unconsciousness was a virus. Parkinson’s was a cure I could not afford, but at least I’m awake.
I saw more doctors than I can count over a span of almost 40 years, and not one disgnosed Celiac Disease before it destroyed my body’s ability to absorb nutrients. The gut is our second brain- a motherboard for everything. Now GF and food-allergies are popular, if often mocked, labels to describe how one body’s sustenance is another’s poison.
I know a child who cannot touch the monkey bars if another child has eaten peanut butter and gone out to play without washing her hands. The world can feel so treacherous, and unforgiving.
Yeah, sure, I’m just another privileged woman being difficult for the chef. I’ll take your soy sauce instead of your tamari and barf my guts out. Your innocent mistake is my private hell. Over decades, this took a lot out of me.
I was in the hospital three times for undiagnosed internal bleeding (ulcers?), and until my friend Dr. Tom Rodgers mentioned he suspected an autoimmune disease, I was ingesting wheat regularly. A quarter teaspoon of gluten is a distinct poison for many systems. Some may experience inflammation or skin irritations, etc, yet I’m referring more to an internal nuclear holocaust that caused irreversible damage.
Yes, I have suffered. How do you think I can see yours so clearly?
Occasionally, a neglectful prep person or any absent minded waitstaff will make a simple mistake, and I get to spend the next 3 days pretending I don’t want to die. Try functioning with something a little easier, like the flu, or a slight dairy allergy, and you’ll know why I drop off internittently. It’s all that you might expect from severe food poisoning, with bonuses.
Please let me rest honey, sorry I can’t get you to school on time.
At least 2-3 decades of misdiagnosis and damage unleashed this neurologic disease. I’m not alone in this experience, and... if it really was this simple, someone would have been closer to a real cure by now. There are more complicated scientific and medical details I’m glossing over, for the sake of time.
Hi, I’m Heather. I’m a Virgo (Leo cusp), I like redwood forests and lakes and quiet cabins. I also enjoy wild dancing all night, music, improv, and exploring unknown spaces. I have children who need a Mom and a full intense life with a crazy schedule...just like yours. I was diagnosed with in curable progressive brain disease in 2011. It took me a year to believe this, so let’s call it 2012.
I am fearless, yes. What choice do I have?
I sensed something was wrong around 2009 due to a sudden inability to use vibrato on the strings of my violin or dance as I used to. A constant pain in my neck distracted every occasion, a virtual butter knife stuck in my spine, twisting. I became incapable of organizing incoming information, fatigued by any activity, and more easily overwhelmed. I felt slower and less hopeful about life in general as depression set in, but had no language and no concept of what was happening.
The most painful part is not physical. I lost friends, my marriage disintegrated, I dropped things that were once important...including an extreme capacity to multi-task and push through any obstacle. I forgot to breathe. I followed a teacher who broke all his vows. I fell in love with a woman too cool for me. What a trip!
Mom and Dad told me I could do anything.
I still move through and around obstacles, but at a different pace now. My life has undergone radical changes, and those who do not choose understand this necessity, have disappeared. Mostly, I’ve been lucky in friendship, and love.
The ones who left me for dead just didn’t know. Perhaps thinking they were protecting themselves from something that had nothing to do with me. Get a new therapist to parrot. I was not the enemy, and did not deserve such mild persecution and projection, but you were absolutely right to be horrified by Parkinson’s.
Parkinson’s is what happens while you’re busy making normal plans, with relatively healthy people. Suddenly, you’re sitting across from another doctor in another sterile office who nonchalantly informs you that brain disease is increasingly common, but “not a death sentence.”
Please hush and stop asking so many questions. Take your pills with extra water and deal with it.
You stumble into the harsh light of what’s left of your life.
So this is it?
This is the new “now”, and you ache to fully realize clichés hold trut, because now is all there is. Lock the door to the closet where your despair hangs. Don’t let the children or your family see. No one can save you, but this is where the fun begins! Welcome to my mess. You are invited to enter into the chaos of uncertainty, with a side of fresh gratitude. Take a front row seat for a glimpse of technicolor fear, or is it highest intention? You’re damn right I’m not flinching. Don’t you see, most of my nightmares have already come true?
To be continued...
We all have a mountain at our gate. What are you going to do about it?