Wednesday, August 2, 2017


  1. I realized after the fact...I kept writing "heals" when I meant "heel" of a shoe..
    Thinking I will leave the grammatical error  and hope it's a Freudian Slip
    Got to love accidental irony

    I hadn't read a post from Jamison in awhile; whom unlike me writes more consistently.  Jamison was a focal part of the documentary The Forgotten Plague that my family and I proudly were the first to screen in Milwaukee, WI.  Ironically, I have never seen the part of the movie that Jamison was featured in as I began to feel quite ill in the theater and left to sit outside in the quiet for awhile and when I returned his segment had been finished.  But I heard many people after say how the visual of a man in such physical amazing shape was taken down was brutal to watch.  I also discussed with the filmmaker Ryan Prior how useful I found it to be that men prominently featured in the film, as this illness is often equated with the overwrought fragile female.  So then I began following Jamison's blog;  I was impressed with Jamison's dedication to writing despite I know myself that often it is writing or doing.  Writing, takes energy and it's a balancing act for my personally to weigh the accomplishment of telling my story, does that story matter, is it worth the possible repercussions?  

    Yesterday when I still hadn't seen a post of Jamison's I began contemplating if Jamison was okay, had his health taken a turn for the worse or maybe he was just taking a break.  I've been simultaneously been emotionally struggling with living in a state of purgatory.  I have moments that are decent, and then an hour or so of actual real life and getting that taste of normalcy to then be taken away each morning when someone needs to come and make all my meals is a demoralizing feeling.  I've berated myself in my head that I must be doing something wrong, or I need to shift and try something else, or maybe I'm just depressed and don't care anymore.  It is an emotional roller coaster of a mind boggling insanity.  

    While my head is going a million miles an hour, I see that Jamison published a post.  Not just any post…he had seen the sky!!!! Two years, it had been two years since he made it outside.  And I smiled to myself because the same day after two years sitting in my closet, I wore my Millions Missing heals.  A few weeks ago a friend came by and she was one of the first to post something about #MillionsMissing with her shoes and I had these shoes in my closet for two years and had said to her when you visit this summer this is silly you can have these shoes…I still don't feel strong enough to wear them.  Then I tried them on and was like damn, I really do like these…so my mom ran out and we got a replacement set for Marci and laughed and I said alright..if another year goes by I'm giving them up.  Two weeks later - the same day Jamison saw the sky, I wore my heals.  

    See this is what this disease does to you, how can I get angry, frustrated despite my life not being close to what it was, I have never gone a day without seeing out a window.  I have gone days not stepping foot outside, but never weeks.  I have gone now three years not being able to make my own meals, but the heal day I heated up my own dinner, made it for dessert at my nephews birthday party and wore the heals that the thought of the energy of had alluded me for two years.  I wore these shoes for a few reasons, one they had been giving me the evil eye ever since Marci's visit.  Two, my brother-in-law's sister was going to be at the birthday dinner and she always rocks great shoes, so a little ode to her and three well I finally thought I could make it from the parking lot to the patio in them.  Progress, baby steps of progress.

    I had been listening on repeat to Stevie Nicks version of her song Gypsy for the Netflix series of the same name.  I delved deep into why and when she wrote it, and it's mostly about getting back to the time before she was famous and a tribute to her best friend she lost at the time and her world felt shattered.  As I listened over and over that's all I want sometimes to go back to being the Gypsy that I was before I left for Phoenix.  Living on the East side with a scarf over my lamp, a corner apartment that slanted like a ship, a walk in closet in the living room, a kitchen that was an accessory and had it's own door, when I didn't know how to make coffee had a window air conditioner and was in a city, a job and a life that I loved.  But most importantly I was in a body that I could rely upon.  That could run and run further, could eat and drink, that I took really good care of - I thought we had a bargain - apparently some virus best guess decided to come in and claim the life I loved.  And often feels it took the person that I was, that I loved.  

    So I need to dig a bit deeper and scold, aka gently remind myself that I am here - I am alive - and she remains; she just rocked a pair of heels and white shorts teetering between chic and a contestant on Miss America, but she emerged and I can only hope that she comes around again. Jamison saw the sky and I rocked my heals, we are the same disease our courses are unknown, our treatments a bunch of trial and errors, our lives renamed and reclaimed dancing between heaven and hell…living a purgatory of hope and a wish for what was...

To the gypsy that remains; 
faces freedom with a little fear… I have no fear only love

She is dancing away from you now, she was just a wish… just a wish
and her memory is all that is left of her now…you see that gypsy that I was...


Gypsy (worth a listen)

So I'm back to the velvet underground
Back to the floor that I love
To a room with some lace and paper flowers
Back to the gypsy that I was to the gypsy that I was

And it all comes down to you
Well you know that it does, well
Lightning strikes maybe once maybe twice
Oh and it lights up the night
And you see you're a gypsy
You see you're a gypsy

To the gypsy
That remains
She faces freedom
With a little fear
Well I have no fear
I have only love
And if I was a child
And the child was enough
Enough for me to love
Enough to love

She is dancing away from you now
She was just a wish
She was just a wish
And her memory is all that is left for you now
You see you're a gypsy
You see you're a gypsy

Lightning strikes
Maybe once maybe twice
And it all comes down to you
Oh oh well it all comes down to you
Lightning strikes
Maybe once maybe twice
I still see your bright eyes bright eyes
And I've always loved you
And it all comes down to you
It all comes down to you

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