Tuesday, July 30, 2013

What we Share

Maybe tomorrow will be the day I feel like writing out all the thoughts that are in my head...maybe tomorrow.  I got a text from my aunt today that i need to tweet or tumble so she can figure out how to follow me...and I replied perhaps I am a writer because I am moody, have a bit of a block and to be honest wonder half the time it even matters...yep must be a tempermental writer of some sorts.  But more importantly than how I identify with writing this story of mine I reminded myself that it has brought me a sense of peace in sharing this experience that I hadn't had before and it was time to get back on the horse.  It also leaves you feeling raw and exposed, but that mirrors how this illness makes me feel most of the time; so at least if I am writing it I have a sense of controlling the dialogue.

Most mornings before I open my eyes I wonder how I am going to do it again.  It's an unconscious thought that awakens me and as I lie there with my eyes closed I tell myself, "just like everyone else out there that wonders for different reasons how are they going to wake up and manage a day that at times feels like it has more obstacles than openings, just like everyone else."  And then I don't feel so alone.

Yesterday was a beautiful day that I spent most of in bed.  I was crabby and envious as my entire family was at a golf outing and it has now become the norm that there is no way I would attend.  I honestly was feeling a bit sorry for myself and then angry as hell that I dared to be so careless with all the blessings I have.  Then like a yo-yo I shifted again to thinking, if I didn't have a bad crabby day once in awhile then I actually must be crazy.

So as these conflicting emotions raged through my brain as I was drifting to sleep this vivid memory of thirteen years ago washed over me.  I was transported back to Phoenix in a classroom at ASU.  I had decided to join the local "Toastmasters" group trying to plan out my future after graduating from SCNM.  Yep those were the days of the type A personality, medical school wasn't enough, I needed to be prepared if I was going to spend my days post graduation speaking to groups on the knowledge I would soon gain.  I don't remember the man's name, but I could see him vividly in his remote control wheel chair, his slurred speech, his life interrupted.  What courage to join a speaking group when he was so debilitated and had to fight for the services he required.  He had been shot while sound asleep lying in his bedroom.  One of his roommates messed with a gun and it went through the wall and sliced through his spinal cord literally shattering his dreams.

He told me he remembered this lighting bolt state of confusion and pain and nothingness.  I drifted off to sleep trying to remember the rest of his story.  Wondering where he was now, what he was doing? Did he have the help he needed...yet I can't even remember his name.

My bed is my haven, I am lucky that when I don't feel well it seems to be the wall of protection I need from this cacophony of symptoms.  And I thought of this young man sound asleep in his own safe haven and the moment that all shattered.  So this morning when I thought to myself how... I realized just like yesterday and more easily than that young man you crossed paths with thirteen years ago.

Tonight I walked over to my sister's house and watched a movie with my niece and nephew before they headed to bed.  Then I snuggled in with my niece as we read Sofia the First and Ariel accompanied by her "pretend" cats because she can't have a real one as she reminded me because I am allergic.  As she nestled under the ballerina sheets and leaf mobile I thought again of this amazing safe haven. Not the place we call home, but the people that make us feel like home. As I attempted to  slipped out she turned to me and said she could feel me leave, so "don't leave until she is perfectly still...that means I'm sleeping."  So on the second attempt as she was perfectly still and appeared asleep as I slithered out, she turned to me with a wry smile said, "Gotcha"  And again my mind drifted to that young man now 13 years older and hoped for him he was blessed with these moments; these perfect little moments tucked into the same day you wondered how you were going to do it again.

 From the poem The Invitation by Oriah Mountain Dreamer

It doesn't interest me to know where you live or how much money you have. 
I want to know if you can get up after a night of grief and despair 
weary and bruised to the bone and do what needs to be done to feed the children.

Wednesday, July 24, 2013


I haven't really laughed, big old belly laugh in awhile, well frankly I can't remember when I have.  I have smiled, enjoyed people's company, chuckled, I did however today, tears in all when I received this email...

First, a bit of back story...I had a Bosch fancy dancy front loader washer and dryer and long story short it was the worst.  It lies to you...it keeps clothes soaking wet with no spin only cycle...it jumps...it takes days to do laundry.  So before I returned from Phoenix I asked my parents to please get rid of it and get me the most back to basic washer and dryer possible and they graciously obliged.

Part two, my aunt was determined that this sleek pretty looking set would be fantastic in her laundry room....luckily they still have the old ones in the garage...I may even have to dig up the old previous emails dedicated to this oh so expensive awful machine...so thank you for my belly laugh today, for two minutes it all slipped away.

Bosch Accords Signed this Week

"Local grandmother, (my aunt), has signed peace accords with the German chancellor and the Bosch laundry ambassador. She stated that she had come to terms with the dryer, although she made it clear before signing the documents that several cycles were unusable. The German chancellor expressed encouragement regarding the ongoing peace talks stating that they were making efforts to address Mrs. Kelly's repeated demands, regarding the issue with spin cycles of the wash machine. Although the German chancellor sounded optimistic, Mrs. K reiterated that no further peace accords would be signed, until rug spinning issues were identified and resolved."

Saturday, July 20, 2013

Psych 101

All I ever needed to know about living with CFS/ME I learned in Psych 101...it forces you to revert back and stay stuck at the bottom of the pyramid.

It becomes your personal Sphinx
What it's guarding against you have no idea
 because it feels more like it is blocking your freedom than protecting it

Disqus for Festzeit