Dear readers, dreamers and lovers,
I had THE MOST PERFECT bit of writing I've ever done ready for publication last week! In my fantasy it was a portal to something vital and important to our communities, and beyond. It would break all molds and rile people up in the right ways. Limitless, timeless and vaguely pertinent to anyone and everyone. It was "A Heartbreaking Work of Staggering Genius", ala Dave Eggers or Cheryl Strayed or Dr. Clarissa Pinkola Estés ... and while we are at it, let's throw in Gabriel García Márquez and Mary Oliver too!
Not even close.
That is also not my intention, but if you need to project, you are welcome to call me Virginia (as in Woolf) or Kiddo (as in Beatrix, who manages to take out the Deadly Viper Assassination Squad and Bill after being shot then buried alive.) In life, my body and soul have certainly been attacked both physically and emotionally, but that is where the similarities end. The truth is that nothing compares to the worst times with Parkinson's.
So I write.
In an unexpected turn of events, I hit delete instead of scheduling a post. The frustrating tech difficulties kept stealing the scarce amount of patience I had left, and this epic work was gone. At first I was discouraged at the perceived loss, then realized I have no skin in the game. I won't let anyone down, because this is published simply for awareness. Messing up and accidentally deleting things is a perfect lesson in letting go. Poof...Instant awareness! How cool is that?
An in-service conduit receives constant inspiration, but must remain unattached to outcome. My name need not be attached to impress anyone and opinions are not what motivate this writer. I don't do this for profit or recognition, although your feedback is appreciated because this is always a group effort. We all borrow and hack through some of this- and what a compliment to be copied or shared or somehow validated, yet in the bigger picture that doesn't matter.
This "blog" or whatever we want to name the stream of consciousness I churn out from one hand (or a thumb on tiny keys) is only in existence because this writer is inspired and even haunted by voices begging to be heard. There are two choices- to listen and let it come through me, or repress and ignore it until it manifests as something else, but it doesn't just go away.
There is no "away".
Since I happen to have an interest in promoting awareness about an unpredictably and incredibly cruel condition we refer to as "Parkie", I spend ridiculous amounts of time online relentlessly seeking answers. Sometimes I find connection or end up pissing people off as I have a way of barging in and setting truth bombs off at inappropriate times. Think of Carrie Fisher* The end goal is what matters, and not how I may be perceived. As the worst critic is within, there isn't much anyone can do to me I've not already done to myself.
My writing includes other conditions and diseases with symptoms that also do not show, because I am hunting the monsters, witches and dragons of illusion so that we may all digest the fact that our thoughts aren't even real. Many of us seek to annihilate the isolation factor of disease and depression, because they both kill people. This crucible is not for the faint of heart. When symptoms take over, you better be ready to forget everything you thought you knew to be safe and just in your world. This is going to hurt like hell! The good news is that it is unlikely to kill you. I just came out of one of the deepest holes I've ever dug myself into and I promise anyone reading THERE IS A BETTER DAY JUST AHEAD, and the views are spectacular!
"Hang in there," is not meant to be flippant. I am not diminishing anyone's struggle, and am happy to throw you a line as opportunity allows.
Hey, nice work, by the way. Your shoes match! Look at you! You showered, you are "adulting" and you remember how to laugh. And wow, you are making coherent sentences and possibly even churning up a bit of spontaneous joy or music. I have attached a link to free streaming music for you, from the DJ in my head. I sang one of these tunes until my voice broke and it saved my life. God Bless Bonnie Raitt, The Ripplers**, Brownlee and No Flow for being conduits of sheer joy and release! Being human can hurt so much, and it also allows us infinite opportunities to dial in to love, if we can just get out of our own damn way.
You are enough in this moment. Not "when" or "if" you do or become better. Imperfectly perfect, right now. 10 pounds, 10 Mountains 10 Years***, or 10 pull ups, (shut up man, I can finally do sets of 25!)
It is my honor to be amidst the finest examples of warriors I have ever witnessed. If we were all in one big room, (like the many I had the opportunity to enjoy at the WPC in Portland) we could just shut our yaps and actually look into one other's eyes to experience instant recognition of human vulnerability and strength in a single moment that goes on forever. We may never meet... but if we do, I do want one thing from you:
I want you to leave a conversation with me feeling understood, or at least heard. My bitter 4th grade teacher with the cotton candy hair, crocheted powder blue vests and glasses on chains used to yell that I was not "paying attention". Oh but Ms. Sherwood, I am picking up much more than you realize... I just use a process that resembles alchemy and uncommon logic. Consider yourself heard, even if I can't do anything to alleviate your pain or even offer you a hand. I'm probably in the same place you are, no matter how sparkly images on facebook or instagram appear. There is enough with Parkinson's (or any neurologic condition with chronic pain) to challenge us, so fighting against ourselves or anyone else is futile. It is not through some magic I possess that I show up on occasion looking rather put together. It's good mascara and a generous but completely ironic dose of swagger.
Letting go of expectations or delusions that we are super important makes room for some pretty cool stuff. We can and do hold space for one another, even when we are really hurting.
I must leave you now because I have people to love who happen to be standing in front of me. These kids are clever teachers, and it's lesson time again. Please carry on as you will, with your own ever-emerging self and your messy life (oh come on!) and consider this quote from another writer who regularly blows this Parkie mind. Find the eye of the storm and you will know your own strength.
"And once the storm is over, you won’t remember how you made it through, how you managed to survive. You won’t even be sure, whether the storm is really over. But one thing is certain. When you come out of the storm, you won’t be the same person who walked in. That’s what this storm’s all about."
Thank you to Tarantino and The entire Kill Bill franchise for feeding our imaginations with unforgettable stories and imagery. I do not own the rights to the photo above.
Get your tunes here, and some may be coming at you live in 2017 LIVE. This year will ROCK:
Love you Carrie:
AMAZING FEATS OF LIVE EAR CANDY:
10 Years, 10 Mountains: