Tuesday, August 29, 2017


Perfection is a malady of the soul.


I wrote what is below the second quote the night of the eclipse and saved it not sure I would ever post it.  I often use this blog as a journal and this particular one I knew I may need it in the future.  I hadn't expected how quickly that future would be.  I wrote it to remind myself when days, plural, like this past weekend have come along to find some solace - not in other's experiences but my own.

I have said before I am very grateful I am not prone to nor ever suffered from clinical depression an insidious silent disease that also falls in the invisible category.  I have tried very hard to be mindful to the best of my ability to delineate between being sad about dealing with an illness that has paradoxically no answers or cure yet hundreds upon hundreds of possible treatment protocols versus what someone suffers from with clinical depression.  The madness that there are no protocols mainly due to lack of research because for so long no one was believed.  Thus we all are left to follow anecdotal patient based cures that can make one question everything they have tried and think they have never tried enough.  Often I am in the position of waxing and waining between a new normal of stability and say is this good enough to possibly risk a treatment that could take you back to days when you were immobile day after day?

This past weekend I had a glimpse into what clinical depression may feel like - for me it was a darkness and despair that I had not felt since I lost my grandfather at ten years old.   When I lost him without warning I felt as if I lost a part of my soul.  This weekend the grief felt familiar; a visceral pain.  It was consciously knowing something will give but having no power to make that change.  The scariest part for me was that I could not hear about anyone else's joy; which is something that normally comes quite effortlessly for me.  I could not hear their pain either but mostly their joy when I felt so much joy had been withheld from me.

This pain was not brought on by my illness, but like everything in my life the claustrophobic nature of this illness, lack of outlets, comfort food, a long walk, etc. magnified it to a breaking point.   It was a pain I knew I had to be with while others helplessly watched.  I knew there was no one that could bring me back except myself,  yet I was not sure I wanted to come back.  In some way I needed this pain, I could no longer continue to pretend that this life feels like enough yet I could not keep fighting other non existent battles that are pointless and trite.  The fight I normally have or the compassion to let things play out I wanted none of that…I needed to feel the pain to get to the other side.  This mental, emotional and physical pain deserved its space; what scared me was how long would it require.

On top of this was the cruel irony a mere two weeks ago I had said to my doctor I think I am on my way I can feel getting better only for the next day to collapse in epic fashion.  This past weekend it was the perfect storm, the water was too hot, the specific circumstances felt to mean and then like a bullet the last 8 years or more of this disease shot through me with a force that shattered me whole.

You know what I have learned the most about living with a chronic disease - is you WAIT.  You wait out the storm.  You hang on for the next second until it becomes the next minute until it becomes the next hour until it becomes the next day and you then do it all over again and wait for yourself to come home.  I'm not there yet, but I'm knocking at my front door.

Thank you all in advance…I write for myself and I write for anyone else out there living with this disease, another or feels misunderstood.  But mostly I'm trying to write in the spirit of the book I got in the mail today "The Subtle Art of Not Giving A F'ck, by Mark Manson.  As for Yates well if you get to the end of the story, like the Monster at the End of the book…I'll tell you why...

This week and a half my sailor's mouth has reached an all time high.  This illness has tested every last fiber of my patience.  I have been confused about treatment options and the added pain literally and figuratively of a compounded acute situation has left me in a dizzying array of insanity.  I reflect on how awful this week and a half has been and may continue to be for awhile;  yet on the flip side how absolutely hilarious it has been in its calamity.  The knock out drag out humor that has accompanied the frustration of inhabiting this vessel that seems to follow one rule; don't follow the rules.

It is like this illness is an epic bad road trip that has taken me through ditches and flat tires and a tank that only knows one level empty.  We have barely made it up mountains and careened through valleys and somehow I am still here.  I am still here and I am okay.  But I am here because of the people that have sat shotgun; oh wait wouldn't that be nice - but I'm not driving…so apparently I am still here in-spite of everyone being bat shit crazy behind the wheel!  This was not what I had envisioned when I hoped I would tackle a brave enough life to take the road less traveled; but it is the road I was given. I often would do anything to give it back and that is what brings me to tonight…the moment of grace.

There is an extraordinary part of this illness when you are not in the storm of survival or hit the wall of surrender; in these rare times of quiet and peace everything slips away and you are left with what is right in front of you; and tonight for as far as the eye could see all I saw were all the people that have stood next to me and picked me up again and again when I didn't think I could do this life another day.  Tonight I was graced with this  extraordinary feeling that often feels as rare as yesterday's eclipse and it's beauty and rarity takes your breathe away.  I currently feel like the historian of my own moment because I know it is fleeting, I know that the chaos will not magically disappear tomorrow and I need this recorded so I can look back and say you saw it...the clouds parted and like a scene in the movie where time stands still or a near death experience and your life flashes before you - it all flashed before me and I was left in my living room bathed in grace.  I was messaging three people simultaneously, my phone was ringing with one of my best friends and while I was writing this one I stopped to answer the call of another.  And it all was so clear, like the meditation I do with my friend Cara it was the glitter in the snow globe gracefully settling to the bottom and when it did all I had was clarity.

That clarity was an image of someone was holding out a silver platter and giving me a shot to take this illness back and as I reached for it I knew I could not take it.  Even if I could, I would not despite it being something I have wished again and again for...  In this moment tonight in every cell of my being I knew if I had the opportunity to accept that platter I had to give back all the relationships new and old in the form they are now and that is a sacrifice I wouldn't be willing to make.  I am certain of little, however there is no denying the certainty of the sliding doors of this new life changed the path of the people in it.  Does that mean all of my relationships are perfect, come on now this isn't a fairy tale and it would be boring as hell if they all were.  In this moment despite this beautiful silver platter a fingertip away I just could not grab ahold.  The oddity of this is it did not feel like a tease or a cruel joke, it was a chilling awareness in the depths of my being that the person holding that platter would need to walk away.

I can't explain how badly my intellect wanted to take it.  I imagined what it would be like to be able to take my nieces and nephew by myself for an adventure.  I was back in an instant staring at the Mediterranean's deep blue waters and radiant sky.  A thousand things flashed through my mind as I sat in silence at this mythical image and then sent them away.

To date this is by far the most humbling and awe inspiring feeling of empowerment from someone that more often than not feels powerless.  This dreamlike experience lasted perhaps a nano second maybe fifteen minutes...I have no idea time was suspended just as reality.  It was a moment where the air changed and a chill runs through you and then you snap back.  It certainly doesn't mean I would like to continue this pot hole filled road; but for a moment at least I didn't want to throw that platter in someone's face and say it's about time...

This illness has changed the dynamics of every single person in my life - not by choice but by reality. All illnesses are not an island, your illness careens through every person in your wake…and I have found for myself;  being the one afflicted it is also my responsibility to accept those changes.  I don't   alone own the grief, the sadness the heartache…everyone you love and that loves you shares in that and they will all deal with it not always the way you had hoped or desired but it is theirs too and you have to find a way to accept that, absorb that and make peace with it or I have found anger and resentment are your only rewards.

As I am attempting albeit quite clumsily to wrap up this post as clear as a bell Yates pops into my mind.  I am no literary scholar, embarrassed to say have never read Yates, yet after googling some quotes Yates and I seem to be on the same page right about now for the preface of this story, not in talent but in emotion.  So this one goes out to all the literary giants that would most likely be rolling their eyes at the pedestrian nature of a blog and something about that makes me laugh and feel small, not small as inferior but small in that eclipse kind of way - that for a moment we were all the moon.

Sunrise of the Eclipse

My mom and aunt with epic Eclipse Patience on the Cloudy Day

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


  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...


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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