Shaved My Head Today: A Stand In Solidarity

Preface: This is not a story about hair, but about what happens when lives disappear—unseen—beneath undertreated pain and illness. I shaved my head to bear witness and to stand with those whose lives and dignity are at risk every day. For their sake, and for ours, please don’t look away. Let it move us to measure the unseen, and help reveal the systemic changes needed to prevent so much needless loss.

(shared with consent)

SHAVED MY HEAD TODAY  

I NEVER HAD THE SOCIAL CAPITAL of striking beauty like my beloved friend KAT, who is lost in severe intractable pain—gaining over 100lbs due to the number one non-opioid medicine required of her to take, resulting in suicidal side effects.  

LIKE MY SOUL SISTER, KAT, who I nearly lost last month during a life-threatening gap in care. I can’t fully grasp what it’s like as a woman to lose your late 20s and 30s, being legislated out of functioning and bedbound in agony, LOSING YOUR CHILDBEARING YEARS.  

But when I shaved my head in support of her battle for survival, I DID LOSE SOMETHING I’VE NEVER LOST BEFORE: the social capital associated with “being pretty” and “well put together” in our society.  

WHEN I SHAVED MY HEAD IN SOLIDARITY for her loss—I became familiar with much of it.  

I lost twelve years to the torture of a different health condition (with no medicine for its torment), believing it was the worst experience before it went into remission…  

BEFORE A STRANGER came to live with me, took care of me, and my treatment finally worked.  

In LOVING this gift forward (instead of paying), I've been humbled by the experience of helping other women: the most recent of whom endured an excruciating trip from New York to Oregon with hopes that emilysplacetheone could be her liferaft. What she and her friend thought would take five days turned into over three weeks due to her immense pain.  

Like her, I've known the agony of a lost relationship resulting from disability, but not the relentless pain that persists 24/7 except when sedated in sleep.  

That kind of suffering AGES YOUR WHOLE BODY and soul.  

While 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. I felt STUCK ON A BYWAY.  

I’ve lost financial security and faced THE LOSS OF AUTONOMY that comes when your body shuts down nearly 70% of the time due to *pushing through torture* and its cruel partner: THE AGONY OF MISJUDGMENT when the reason you let people down remains invisible to the human eye.  

I have experienced THE SHAME OTHERS PLACE ON WOMEN losing their executive functioning, struggling to stay organized: pushing themselves, faltering, pushing themselves, faltering, with a clean home drowned in inhumane torture.  

I lost the independence of being able to drive, though only for a couple of years.  

I know what it’s like to feel like a PRISONER IN YOUR OWN BODY… confined mostly to the four corners of your room, in bed, enduring unending torture.  

Even though I could shop and cook, the cost was always *increased torture*, leading me back to bed…  

BUT I NEVER LOST FULL AUTONOMY like my friend, KAT.  

I lost cognitive abilities and was UNABLE TO HOLD DOWN A CAREER as a certified public accountant, and the ability to read and enjoy books, even struggling to concentrate long enough to enjoy an audiobook—though reading was my escape FROM A CRUEL WORLD. My love for books was born from a desire to introduce children to those joys: the adventures of the mind.  

While I share many similar losses, THIS NEW LOSS—the loss of social capital tied to losing PRETTY CAPITAL and looking “well put together” by American standards for women—  

— IN SHAVING MY HEAD—-  

represents a new experience.  

One I will gladly bear  

in solidarity TO HER LOSS,  

LOSSES ALSO EXPERIENCED by another dear soul sister [the professor] grappling with severe intractable pain & the torture of Lyme disease—  

BACKSTORY: Prisoner In Own Body https://emilysplacetheone.org/prisoner-in-own-body  

WREN’S FLIGHT: A Pandemic Story  

— threads connecting 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 trauma, overcoming survival mode emotional glitches, much like wounded animals reacting in pain, isolated in bodies that shut down, glitching cognitively like a TV screen losing its image due to the trauma of capitalism’s relentless push.  

I love these two sisters, both of whom, like me at one time… faced LOSING THE WILL TO LIVE… in unending torture.  

My condition went into remission with LIFE-GIVING MEDICINE (long-term antibiotics) and Emily’s rescue.  

Unlike mine, their conditions may never abate…yet they CONTINUE TO BE DENIED the only medicine that has helped them.  

They are BEING CRUSHED IN THE COG of medical, insurance, governmental, church, community, and family INJUSTICES rooted in misunderstanding and discrimination—at best not truly being seen.  

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 denied the LIFE-ELONG MEDICINE that allowed them to pursue advanced academic careers, and that, if not denied now,  

could offer them a LIFE.  

Will you please help them?  

HELP DEFEND THE VULNERABLE.