Thursday, August 25, 2016

Curled Up

I watch Sophie curl up as tight as she can at the end of the bed.  I know how she feels.  I would like to curl up and close my eyes and ruby slipper it back in time.  I feel frozen much of the time.  I think the majority of my days are spent waiting.  Waiting to feel well enough and fill in the blank.  Waiting to feel up to eating.  Waiting to feel up to taking a shower.  Waiting for the gnawing cellular discomfort to pass.  Waiting until like a wave crashing over me and takes this feeling away.

This will pass.  Sometimes in an hour, sometimes in a few often in a week.  But it will pass and then some relief comes with no warning and no explanation.  Last night it was in the form of Kopp's custard.     All day from the moment I woke up I waited.  I hydrated.  I took supplements and prescriptions.  I did inhalers and relaxation breathing.  I attempted a movie, a distracting text and phone call.  I waited lying silently curled up and just kept thinking it will pass.  It will pass you can not force it - but it will; you must believe it will.  It will pass if even for a moment.

I had my summer helper arrive at 5 pm to fix me some dinner.  I sat up and stared at the rice and chicken, salad and asparagus.  The same meal I've stared at a hundred times before and I waited.  Start with one bite.  One bite and the next may come more easily.  Slowly making my way thru with the quiet of the room I took another.  Twenty minutes later and a quarter of the way thru it came to me - custard.  I need something dense - so Erin left for chocolate and vanilla and I encouraged myself to take another bite.

When she returned it had been nearly 40 minutes since the plate had been put in front of me and I had eaten a bit over half.  And then began eating a spoonful of custard and my whole body felt like it screamed thank you! We needed calories, density, easy.  Nothing to chew and another fifteen minutes went by and at 6:45pm after an entire day of waiting it all melted away.

I got up and finally cleared all the magazines and catalogs off my dining room table - a task that I didn't want anyone else to do but had alluded my energy for the last week.  I grabbed the frames from the closet in the playroom and my helper put some photos I had ordered two weeks prior into them…the frames that have been in the closet for 2 years.  I threw the cover for Sophie's pillow and a bath rug into the dryer.  And then it started to slip away, and my bedroom called once again.

That is what a day looks like.  It is difficult for me to have people in the house while they are doing - it looks like I am doing nothing - but the nothing is something - it's strategy, it's talking myself off a ledge and it's waiting.  Waiting for a moment to see if it arrives.  

A few nights prior - Monday I was able with my mom to take my friend's daughter back to school shopping.  Start to finish with driving was less than 2 hours.  But I was present - and able.  Not able to switch stores when I realized Nordstom Teen department in Milwaukee is nothing like it is in Scottsdale.  Not well enough to go to the cafe and order a drink or dessert.  Not well enough to drive her myself.  Not well enough to have her come over and maybe watch a movie or spend the night.  But well enough to get the task at hand completed and be present.  That is the thing nothing is like before, nothing isn't strategized or manipulated to appear different than it is - but it must be good enough.

I think about Sophie curled up at the end of my bed or on her pillow next to my pillow and think she isn't thinking is this good enough.  Yet, it is all I need.  So maybe I can learn a few lessons that good enough is often all any of us need.

Tuesday, August 9, 2016


I found this article under "rare diseases" which is probably problem number one…however the article itself is very informative on how the United States really re-named Myalgic Encephalomyelitis to Chronic Fatigue and put all the emphasis on the "fatigue" where all of us living with this disease already know the Fatigue is like the tiniest piece of the puzzle….

Rare Diseases Article…really Rare???

I know for myself yes the fatigue aka mind numbing exhaustion is always a re-bound effect…however the reactive airway disease, constant sore throat, difficult digestion issues, insane food allergies, chronic pancreas pain that waxes and wains, headache with the slightest temperature increase, the sensitivity to smells, irritation with noises….the list goes on and on.

Every day I just can't believe I can not find a solution to get out of this situation.  Most of all it steals living…you have moved into surviving and fake living with the utmost dedication.  Everything is managed and highly controlled and the person you once were is a distant memory to yourself.

When you have an illness there is this desire for our society to remind you then you must "carpe diem" - but a unrelenting chronic illness the only way to seize a day is to find a moment and to work really hard to save up for that moment.

What I miss most lately is eating.  I just got the invitation for my friend's daughter's Bat Mitzvah and I thought mother fucker I am going to miss out on all that good food.  I'm not Jewish but have managed to amass a large number of Jewish friends - and I think in part for my ability to devour brisket and kugel and my happy indulgence of the Jewish mother feeding me.

Unless you have food allergies you can't imagine when food now has become a war zone of land mines.  The basic necessity of life has betrayed me…how to you begin to fix that?

Saturday, March 26, 2016


there is a selfishness in being ill and i hate it.  it is the place that scares me; the ability and desire to detach from healthy people and their lives; it is at times just too painful to be the cheerleading observer taking a perpetual back seat to the living.  it is self preservation and it is such a vast departure from my life before that it scares me in my ability to be content in this place.  this place to shut down, close the blinds and have nothing left for the interest in what everyone around me is doing - i simply don't have enough energy for anyone but myself. a myself that is a polar opposite of the person i use to be.  and i have learned to forgive this new person realizing it is a matter of survival but it doesn't mean i have to like this person very much…however i am learning to admire her. and for now that is enough.

Tuesday, March 1, 2016

Yearning to Be Free

For years I had been saying my dog is 7 or 8…when in fact she turns 13 this year.  That seems to be what I have done with this illness, averaged down…when in reality it started over 12 years ago.  Sick every day not tired.  Sick day after day, week after week, year after year where they all blend together.  Tired, tired I could deal with, sick…sick takes away hopes, dreams and living in the world.  I miss the world.

This too shall pass.  Perhaps not the sick, but the hopelessness of the sick, it is the ebb and flow of this disease similar to the seasons in the desert to the visitor they are hidden but those that live here see and feel the shift.  The tiny glimmers of hope that remind you that you can do this one more moment until that moment becomes and hour and that hour becomes a day and soon you have strung together a week that you have no idea how and you get up and do it again.  For time is not your friend as you realize you lost most of your prime, but perhaps time will yield answers.

Valentines weekend.  My favorite holiday.  For 3 glorious days things lifted, was I normal healthy.  Not even close, but there was a shift where every moment wasn't just so darn difficult.  And then poof it disappeared and the days since longing for the mysterious cupid to sting it's arrow of hope feels more like a mirage in this desert than a reality.

I am trying my best and grateful for the help I have.  Yet how long can one survive in purgatory?  Think forever unfortunately.  What scares me the most is that I am better than many - but for how long?

New Colossus , Emma Lazarus
Not like the brazen giant of Greek fame,
With conquering limbs astride from land to land;
Here at our sea-washed, sunset gates shall stand
A mighty woman with a torch, whose flame
Is the imprisoned lightning, and her name
Mother of Exiles. From her beacon-hand
Glows world-wide welcome; her mild eyes command
The air-bridged harbor that twin cities frame.
"Keep, ancient lands, your storied pomp!" cries she
With silent lips. "Give me your tired, your poor,
Your huddled masses yearning to breathe free,
The wretched refuse of your teeming shore.
Send these, the homeless, tempest-tossed to me,
I lift my lamp beside the golden door!"

Tuesday, September 15, 2015

Mon coeur appartient Nice

I wrote this original post in September of 2015.  Addendum: When I am asked if I was well tomorrow there are two answers big and little picture.  Little - just dinner with friends with no conditions, waking without needing help, the everyday list is long.  But then after the escape to normalcy, my answer never waivers: I would go straight to the airport and buy a ticket for Nice.  I have never traveled anywhere that felt more like home than my original home than the South of France.  My heart belongs to Nice.  My heart weeps for it's people. 

I was watching an old friend on TV…the friend being a show..Felicity…and it made me think of all the things I miss being sick…and then this amazing thought came to mind…everything I miss is because of everything I have had..and how in the world could I ever being anything but joyous from missing so much…Nice, France…we will meet again ..

Sunday, August 16, 2015

I'm not Planning...

I am not planning on being sick forever.  A thought so dangerous it's the equivalent to taking on Everest without Oxygen or a Sherpa.  A thought that came into my head without warning and I expelled it like an avalanche smothering it's very existence back to the recesses of my mind.  This is the thought that can decimate you.

This illness has a way of punishing those that begin to think that way…just try me, take me on and see what I will do to you.  You think you can walk around like a healthy person or someone fighting a different illness that gets rewarded for pushing through pain, pushing through fatigue, pushing through side effects of medications.  Oh never mind my sweetie…you just try me and see who will win.  Remember me?  I am the one that has evaded logic, evaded interest, evaded federal funding, evaded reason..I am the puppeteer pulling your strings so just give it a try and see how far you get.  I will have you bedridden, motionless, thoughtless, brain hurting, stomach wrenching, down so fast you won't know what hit you again.  So what was that thought you were having…You are not planning on being sick forever…well get in line honey I've got nothing but time.

Monday, March 30, 2015

Sonicare and The Hurricane.

7pm. Seven PM on Sunday night was when the switch finally went off and a bit of freedom was restored.  I don't know why, or what I did, sometimes I feel it matters very little - though I know I am mistaken and that is just the wicked doubt that seeps like another virus running through my veins.  This switch was more like a dimmer tonight.  It didn't shine brightly and enlighten the room or my surroundings, it was more of a quiet break.  Like when the sun slowly peaks through the winter grey clouds showing the world it still exists, it hasn't forgotten about you, you can see it but you can't feel it's warmth.  The reminder that it doesn't fail to exist just because you haven't felt it's rays.

It started without a thought like a minor reflex and I sat up and moved from the bed to my floor.  Now this doesn't sound so appealing, but the solid surface of the ground with my legs resting on the ottoman above felt like a safe place.  My back was finally supported, my feet above my head, my body being supported by the ground and sinking in and I realized how much in fact it ached.  The last four days while lying in bed it has felt like an invisible vice has been wrapped around me.  Pressure from above sinking into me.  The bed below barely holding me.  But on my back, my eyes closed I felt for a second I was back to my first yoga class.  Lying on the carpeted library floor of a suburban high school.  The best extra credits I ever took for a summer.  I can still imagine what that room smelled like.  That was a summer of awakening.  I had my health back after my tonsils removed, transferred back home to UW-Milwaukee which was a much better fit and one of my first classes I added to catch up from the semester lost introduced me to Linda.  She was my instructor for many years, etherial and grounded. From the Library to the 3rd Ward Loft she was my first and best instructor  I ever had.  Back to reality. It's 2015, on my bedroom floor and I began to breathe and put arms over head and like a coil began to unwind.

The last few days breathing was tiresome.  Eating exhausting.  Sleeping a hopeful elixir but that is not how it works.  You just lie there and stare.  People always think this illness is so graceful, and in my mind I try to imagine it that way.  I often try and pretend I am Lady Mary at Downton Abbey who couldn't be bothered with the menial tasks of day to day life.  Having someone do these tiresome chores beneath her..In this fantasy I admit that this illness does suit me if I had to choose…then of course I didn't get to chose.  I admit that if I had to put my hand into a bucket and pull out blindness, cancer or dementia oh my list goes on and on how would I fair?  This little exercise brings me comfort as I go through a laundry list of what I could not handle and peace in that this is the one I won.

I've moved to sitting upright.  Cross legged with my back supported by the ottoman that held my calves.  I stretch my head and slowly rotate my neck in little half circles and I breathe.  How far do I go?  The light has gotten a bit brighter, the clouds have begun to part.  Do I dare?  Do I dare stand and stretch upright?  I do and I wonder could I have done this at 2 pm? Could I have done this yesterday?  The day before or before that???  Am I lazy and didn't try hard enough?  That nasty little doubt coming from the shadows and I remind myself to stay in this moment right now - this moment of stretching to  the the left - expanding from the ribcage not to crush it inward as Linda taught me many years ago her voice a calming whisper in my ear.  She always taught us that yoga was done anywhere, anytime not bound by a class.  It was the awareness of what you were doing at any given time and place.  When she was a mother of three young children she use to say yoga was emptying the dishwasher with a mindful awareness and an outstretched arm.  Here I am, my feet rooted to my bedroom carpet as my hands reach to the sky.  I am in this moment, and watching this moment wondering how can this be this hard one minute and this easy right now?

I stretched and I planked and I breathed it in.  Mindful of my drifting thoughts wondering again why now?   Then patiently directing myself to drink now in because we don't know when it will come again.  The sun was setting and I sat on my upstairs patio and gazed at the trees.  The gray sky with bright flashes of pink.  Listened to a couple walk on the path.  Notice a light on in the distant hotel with a couple in their resort bathrobes taking in the same view as me.  As I was sitting comfortably on one chair with my legs on the opposite I could finally find the words for the question that has eluded me…What does it feel like?  This past 4 days it has felt like I am carrying around my body.  The 136lbs do not serve me or energize me or carry me…I am carrying them.  That is how it feels to get out of bed, to shower, to get dressed to eat to talk …It feels like this separation and I am carrying myself around a bag of muscles and bones heaped over your shoulder.  Where every movement, every breathe is an act of energy that adrenaline assists all the while you are slowly decaying inside.  That is why you are so heavy you see yourself in every action you take.  You bargain and bet and wager what you can do - with money you don't have to spare.  You are treading water while the ocean is swallowing you but most of all you are carrying yourself and you are too heavy.

I moved inside and looked at myself in the mirror.  Looked through myself and saw a bit of life back in my eyes.  My complexion suddenly clear and smooth.  I began with the yellow Oral B toothbrush and began a cursory brushing of my teeth.  When it's really bad every time I brush my teeth I have a memory of my grandmother.   I remember sitting on the floor of their bedroom while she would be getting ready for the evening in the attached bathroom.  I would notice the effort it took to brush her teeth when she was really ill but trying to hide exactly how sick she felt.  I would chat with her and she would brush her teeth with this sense of duty and habit.  I see myself in her when I am too tired but force myself out of bed - the toothpaste hastily on the bristles, the quick deliberate motions that require full concentration but little detail.  It makes me sad, it always makes me sad.  But not tonight…

I was playing "The Hurricane" on my iPhone by Bob Dylan - playing time 8 minutes and 33 seconds.  I had it on from a link from Raffale Sollecito's FB page he posted it after his conviction was overturned for the murder of Meredith Kercher.  I've always related to  wrongfully imprisoned people long before this illness; and now have found in some way a bizarre kindred spirit to those souls.  It's so hard to prove a negative.  That is what this illness is and was so long for so many afflicted, trying to prove a mystery.  So the Hurricane is playing in the background and I had the courage to grab the Sonicare.  And I found myself gazing into the mirror with a Mona Lisa smile.  I was at my sink standing after some yoga poses and sitting on the porch.  I was mindful of brushing my teeth and moved from a manual toothbrush, to the hum of the Sonicare to the floss to a few swishes of Listerine and back to a final brush.  The song was finishing as I reached for the Dove soap and then took my Clarisonic and washed my face with the care of an esthetician.  When it's two minute timer was completed I had dried my hands and opened my glass jar I have filled with baking soda and put some on my hand and washed my face again.  When I patted my face dry and slowly applied lotion I again looked in the mirror at awe that these tiny take for granted moments could in the moment bring me such joy.  These actions that most do on a daily basis with the perfunctory motions on their way somewhere else…this was my somewhere else.  I was not going anywhere- these acts done with ease rather than effort was my journey and destination and in this moment it was enough.  I felt free.

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