10 September, 2012 12:30 pm
I’ve referred to myself in the past as “Calamity Jayne.”
Reading back on diary entries, blogs posted and not, and other notes about the last six years of my life, I see how lucky I have been to not have cracked my noggin open (accidentally, that is. Lord knows it’s been opened!). I’ve fallen, tripped, slipped. I’ve been paralyzed, in a wheelchair, in leg braces, used a walker…. I could go on. I swear, I should have just worn a helmet.
(But that would have messed up my hair.)
Yes… a helmet. With giant yellow flames and orange graffiti that screams:
“WALKING DISASTER! ALERT. ALERT!!!!!!!!!!!!!!!!!!!”
For all u pop-culture junkies out there, imagine this combination:
I am … Larry David, a la “Curb Your Enthusiasm” and the fictional klutz (pre-Vampire, that is) Bella Swan combined. (Scratch that. I am neither rich, like Larry, nor a vapid perennial nineteen year old. Like Bella. Bella SWAN: how ironic is THAT nickname???)
Yes. As if the other side effects of Stroke, MMD and TBI haven’t been enuf , another freakin’ irony of post-stroke life? I’ve gotten clumsy. AWKWARD. Unfit.
So, I was never gonna dance the lead role in “Swan Lake,” people, but I’ve been, all my life, a very physical person. I’ve danced, ran, played school sports, been active in theatre…I was in a Afro-Carribean Dance company in the late 90’s
I spent years studying the history behind Hatha Yoga, learning Sanskrit, and devoting my heart and soul to the art and craft of Ashtanga Yoga.
Being typically paradoxical, I also boxed. BOP!!!!!!!!!!!!!!!! That’s me. Meditating one minute: sitting pretty in my“OMMMMMMMM” getting my Zen on, the next, dancing around like a Crazed Monkey, practicing my upper cut, right hook and jab.
I learned Tae Kwon Do. I did a lot of weight training, swimming, hiking and biking.
Just recently, as I have experienced a multitude of disasters, which I’ve chronicled above, so have other changes taken place. I am running out of steam to chronicle them here, but I will say this: between the good and the bad, I am somewhere in the ….middle.
Much like my life story.
Here is a quick run-down of a few of the C-C-C-C-CHANGES that have gone on this past month.
1.) Gini Watson (Kevin’s mom) came to visit. We had a blast. REALLY. That warmed me up. It also gave me an idea of what it might be like to live with a caregiver. More on that later, but it just seemed to flow. That gave me mad hope. I am holding on to that. (I will include pix of Gini and the family next time- esp her with her boy and the kiddos – she will treasure those, as will we).
2.) Mom continues to advocate like crazy for me, helping with advocacy stuff (and caregiver stuff) from 2,000 miles away. She has been focusing on two areas primarily:
a) Getting me in to see the many MDs I need to see before I lose my health insurance on 31 December of this year. AAAGGGHHHHH!!!!!!!!!!!!!!!!! Most important are the appts with my new Neurologist, an “Epileptologist” (to see about my seizure stuff), and then —for another day ——– stuff having to do with the jaw surgery and eye surgery I have to have before that fell December Day cometh…
b) MEDIA: She continues to call, write and generally harangue. This has begun to yield results. There are 3 papers interested in my story as of now. More on that later. *** Promise.
Mom’s been doing all this – with a lot of support from my DAD, and my siblings – despite their own michegas. Their own drama and life stuff. Mom’s been sick. That she fights so hard for me blows me away. God bless the Mothers.
3.) ARTICLE IN THE “GREENWICH TIMES.” Alison Mango wrote it. It came out 1 September, 2012. More on THAT later. PLEASE READ IT. (Thank you, Alison…really, more on that later!) and HI!!!!!!!!!!!!!! to my new friends in Greenwich! Especially HI to my Mum’s old-school BFF- TONI! HI!!!!!!!!!!
4.) I’ve reconnected with more and more friends from days past. This has been amazing and their support has given me new energy to fight this fight. THANK YOU. I also have an actor friend who might be “endorsing” my cause. Prayers again. Fingers Crossed. Sign the Cross and Bless the Buddha.
5.) Benefit Concert and other Fundraisers and money-raisers in the works???
a) Daz Hurst, my former guitarist with Betty Power, has taken on House of Blues to work up some miracles. He has a genius business plan. This will entail releasing a limited edition copy to the public of “My Red Telephone.” (WHOOOOOT!!!!!!!!!!!!!!) And much more. Daz doesn’t want to raise a few grand. He wants to make it possible to write the check to “Rehab Without Walls.” —Amen. I am praying to all the deities I usually mention that this happens. I hold onto hope.
b) The other Fundraiser and money raiser events are ones that a few friends have begun working on. More on that, too. The idea there is to raise funds to pay for a Caregiver for a year to 18 months and to help with general cost of living bills. (REALLY. WHO IS GONNA HIRE SOMEONE WHO BLACKS OUT ON THE JOB????????? I have so many comedy bits that I want to include in these blogs but I’ve been awful serious lately. Like, for about18 months, lately??? —To be real, I think I got really depressed when the surgery like, saved my life, but didn’t “fix” me whole. I need THERAPY!!!!!!!! (the kids keep playing that song—grrrrrrrr….) Anyway, I got so down I kinda stopped keeping up.*** That, coupled with TIA’s, withdrawl from medications, trying new medications, pain pain and more pain ……….. trips to MD, Stanford, rehab, life, a sick Dogger, a Sick Bee…………Life……………..
***Ha. That was unintentional.
6.) After a 3 week break (due to one mother**!!!r of a TIA, and Jay’s schedule (the nerve, having a busy life! Lol), I’ve been blessed to have resumed working with Jay Jones, who I mention below. Jay is a miracle worker who came into my life this summer, and decided to take me on as a client. He is a personal trainer on paper but for me, as I tell you below, he is much more, especially as my situation is so medically ….tenuous. He takes care of me even as he pushes me to my limits. Thank God and Thank you JAY for giving me renewed hope.
7.) SYNOPSIS of this stuff: There are absolutely other things I have omitted here. But really? Who’s still reading? Lol
8.) I NEED AN EDITOR!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
There is such a book in this. I have such plans, you guys. I mean, really. BIG. I am not going down quietly and I am not going to recover and fade into the background to live the rest of my life.
I have faith that with the help of all the above –mentioned things, along with Jay’s help and the continued help of my family, friends, my support system, and, I PRAY, a wider circle of support that these efforts might yield the support necessary to enable me to begin the “Rehab Without Walls” program ASAP, and to hire a caregiver for even 4 hours a day, 5 days a week — and the cost of living stuff would be good. But I’ll eat Ramen and live with 16 people in a studio apartment if that’s what it takes to get thru this with the above stuff. No really. That would be BAD for recovery.
I just ………….want to recover. I just ………. Need that last push to get me through. I want to live the life I was destined to live. I now know this all was meant to be part of the story. It’s not unreasonable to want to step into the next phase, is it? I feel like it’s time. I move slowly these days, peeps. It’s not like I’m rushing back on stage or to the studio. Though I am WRITING songs like mad. I just need to find a writing partner. find a writing partner. It is too much to be re-learning to play guitar AND compose the music all by myself, AND record it, too. SO ……keep your ears peeled for me, would you?