Thursday, August 3, 2017

The B in EG



Storm is brewing
Note: I had this in the draft pile for awhile, thought better to put it out there when the B in EG had gone quiet for awhile...

I'm an absolute raging bitch inside of my head right now…and not proud of myself also to my lucky care giver of the day my mom.  I would like to be angry at everyone and everything but really there is no one to be angry at except this god damn illness and it doesn't fight fair.  You can't yell at it without screaming profanities at yourself.  So what do you do and don't you dare say meditate unless you are the 15th reincarnation of the Dalai Lama.  Yell at your friends, nope that doesn't work as two of them wanted to come by today but you weren't well enough.  Yell at your doctors, the one that called in twice to check on you this week when you called because couldn't get over a bad hump.  Yell at whom…who the fuck is there to yell and scream and say I hate everything and everyone because yesterday this god for saken illness gave me 2 hours of freedom….2 hours where you and your mom headed to Nordstrom..where I was out in the real world like a real person that didn't look or act sick at all.  I had finally succumbed and used my walker.  I have had the walker for over a year…and I didn't bring it back to WI.  But my dad's friend was out in Phoenix and grabbed it for me and so there it has been in back of the Explorer that my dad graciously keeps in my driveway here despite I never drive.

See who the fuck do you yell at when you have parents like that?  That leave a 2 year old car for you and drive their old pick up truck "just in case" you drive.  So Nora (my Mom) and I had a normalish 2 hours…yes I had my walker but it was really just a nice accessory to rest my purse. Yes under the walker seat was a cooler packed with snacks like you do for a toddler.  Yes I had been in bed until 3pm when I even thought about this jaunt.  I tried on shoes…tennis shoes that is because I'm attempting a tread mill to see if I can walk for a few minutes a day inside and I no longer own a pair of tennis shoes. We then went all crazy and made it to EverEve a store just outside Nordstrom and in about 5 minutes flat I found a pair of jeans, jean shorts, and top.  Didn't try it on, needed to sit outside the store because I was getting warm.  But when we left our little excursion I felt about the same as when we started which was amazing.


I ate a half of sandwich and my parents went out to dinner.  And then things started to pile up.  I got too tired by the time I kept taking Sophie off the bed and back on and off again and outside and feeding her that I got hungry.  And I was almost sure I could make myself some eggs, but here's the thing where it's hard for me to make food..it's the brain power.  I started, sat on my stool in the kitchen and called it…so my parents had to come back from their house over here to help.  I thought I would try and be productive and peel a tangerine…and despite it looking perfectly fine from the outside and I am the queen of picky when it comes to the food I can eat I open it to find the most disgusting black mold that I thought was a large bug ever…I thru it in the sink and screamed just as my parents were walking in the door.  Yep that was it…back to bed.
Nope she's certainly not the B

So here we are today…the B in EG…I woke up and yesterday the good part of yesterday might as well all been a mean "gotcha"…ditching a bride at the alter, telling someone they won the lottery….okay I think I'm accidentally quoting and Alanis Morissette song…well that sums it up…but far worse than rain on your wedding day…. seriously if that is your biggest problem get a fucking life.  Yes see this B is strong in this one…. None of this feels ironic it feels cruel.  How to go from that yesterday to today my head felt like it couldn't process a thing, my legs felt heavy and numb and after I was in the shower my lungs tightened up…I got dressed, did my nebulizer all trying to get 7 minutes away for my nephew's birthday party.  My mom left at noon and came back to get me…but I couldn't eat the food she made…I snipped and snapped and pretty much was a nightmare to be around…she was the only one in the path of my wrath.  I was just so frustrated.  And people try and say it's okay - he didn't even notice it was so crazy the nerf war party.  But the thing is it does matter - it matters to ME.  And the fact that it starts to not matter; the continual doesn't matter because this is your new normal missing nearly everything is a hard pill to swallow...oh my goodness I did it again...Jagged Little Pill...I swear I haven't even listened to Alanis in years.  Okay now I'm laughing at myself..



Frustrated that I should be happy with a good few hours - but it's a few hours…do you know how long the days are.  I always say people think I have so much time on my hands but when everything takes so long waiting to feel well enough it often feels like I'm racing against time.  I am always out of time; because timing is everything and I need to wait it out to get to the point where I feel well enough and by that time often I've missed what I tried so hard to make.  Thus the B in EG comes out..and for those that have been in her lovely path all too often - thank you.

Wednesday, August 2, 2017

Gypsy





  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; Jamisonwrites.com.  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...

France 


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
Oh
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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