Shaved My Head Today
shaved my head today, in solidarity. a plea for understanding
(sharing with consent & can be withdrawn at any time)
I NEVER HAD THE SOCIAL CAPITAL
of striking beauty like my loved one KAT lost in severe intractable pain…gaining over 100lbs to the number one nonopiod medicine required of her to take—causing suicidality, side effect
LIKE MY SOUL SISTER, my friend, KAT, who I nearly lost in a life threatening gap of care last month. I don’t really know what it’s like as a woman to lose your late 20’s, and 30’s legislated out of functioning, bedbound in agony. TO LOSE YOUR CHILDBEARING YEARS.
But when I shaved my head in support of her battle to live, I DID LOSE SOMETHING I HAVE NEVER LOST BEFORE: the social capital that comes with “being pretty” and “well put together” in our society.
WHEN I SHAVED MY HEAD IN SOLIDARITY to her loss—I was familiar with much of it.
I lost twelve years to the torture of a different health condition (no medicine for its torment), thinking it was the worst and most inhumane experience before it went in remission…
BEFORE A STRANGER came and lived with me and took care of me, and my treatment finally worked.
In LOVING this gift forward (as opposed to paying), I have been humbled by the experience of doing the same for other women: the most recent of whom made an excruciating trip across the country to Oregon in hopes that emilysplacetheone could be her liferaft. What she and her friend thought would take five days turned into more than three weeks to drive 40 hours from New York to Oregon because her pain was so great.
Like her, i have experienced the agony of a lost relationship in disability, but not the kind of agony of ongoing RELENTLESS pain 24/7 except when sedated in sleep.
the kind of suffering that AGES YOUR WHOLE BODY and soul.
I have lost a career, THOUGH NOT
AN IVY LEAGUE EARNED ONE.
I’ve lost close connections with friends, as most passed me by *in the busyness of life* in America. STUCK ON A BYWAY
I’ve lost financial security, and have experienced the THE LOSS OF AUTONOMY that a body shutting down nearly 70% of the time from *pushing through torture* brings and its cruel partner: THE AGONY OF MISJUDGMENT when the cause of letting people down in that state is invisible to the human eye.
I have experienced THE SHAME OTHERS PLACE ON WOMEN losing their executive functioning and struggling to keep organized: pushing themselves, faltering, pushing themselves, faltering, a clean home lost to drowning in inhumane torture.
I have lost the independence of being able to drive, though only for a couple years.
I know what it is like to feel like a PRISONER IN YOUR OWN BODY…confined mostly to the four corners of your room, in bed, in unending torture.
and though I could shop and cook, the cost was always *increased torture* and collapsing back to into bed…
BUT I NEVER LOST FULL AUTONOMY
like my friend, KAT
I lost cognitive abilities, UNABLE TO HOLD DOWN A CAREER as a certified public accountant, the ability to read and enjoy books, and even the ability to concentrate long enough to enjoy an audiobook—though
books were not my escape FROM A CRUEL WORLD. My love of reading was not so much that I couldn’t wait to be a teacher to introduce children to such joys: the adventures of the mind.
like my friend
while I have experienced much in similar losses THIS NEW LOSS—the loss of social capital that comes with losing PRETTY CAPITAL and looking “well put together” by American standards for women
— IN SHAVING MY HEAD—-
this will be a new experience.
One I will gladly bear
in solidarity TO HER LOSS
LOSSES ALSO EXPERIENCED by another dear soul sister [the professor] in severe intractable pain & the torture of lyme—
BACKSTORY: Prisoner In Own Body https://emilysplacetheone.org/prisoner-in-own-body
WREN’S FLIGHT: A Pandemic Story: https://emilysplacetheone.org/wren%E2%80%99s-flight
— threads in the universe linking us all [the poor girl, the Ivy League grad, and the professor] in a journey TO RISE UP THROUGH IT ALL..being both the helped and the helper, unconditional love forged through the trauma of having to overcome survival mode emotional glitches, much like wounded animals lashing out or turtling in pain, under the torture of the senses, or the isolation of bodies that shut down, glitching out cognitively like a tv screen losing its color or the image itself becoming black-and-white static, from the trauma of the ever present call of capitalism TOO PUSH..
I love these two sisters, both of whom, like myself at one time..LOSING THE WILL TO LIVE…in unending torture.
my condition went into remission with LIFE GIVING MEDICINE (longterm antibiotics) and Emily’s rescue.
Unlike mine, their condition may never abate…yet they CONTINUE TO BE DENIED the only medicine that helps them.
BEING CRUSHED IN THE COG of medical, insurance, governmental, church, community and family INJUSTICES rooted in misunderstanding and discrimination at worst—not truly being seen at best.
I never imagined I’d find myself in a similar crisis while trying to save another—See nationalpain.org,
I don’t know if shaving my head can truly
MAKE VISIBLE THEIR PAIN
but I had to try.
Because they are being denied the LIFE ELONGATING MEDICINE that safely allowed them to have advanced academic careers, and that if not denied them now,
By arbitrary dosage caps that don’t take into consideration the genetics of different types of metabolizers (for example).
They could have a LIFE
Will you please help them?
HELP DEFEND THE VULNERABLE