Cathartic Activism

My link to the world of M.E. activism happened at the time in my life that I needed it the most. After two years of being shoved out of doctors offices in tears, dismissed and abused by medical professionals who were supposed to diagnose and treat me, having to beg for and be repeatedly denied medical testing and referrals, of being harassed in public because my disability is not visible, of losing my freedoms and abilities both in small pieces and in big chunks, of feeling like pieces of me have been stripped away until there was nothing left... I was in a crisis mode, feeling as if my entire self was disappearing completely.  It was  the week that triggered a dangerous hypomanic episode of my bipolar disorder, something  that I cannot afford to ever let happen again, because the overexertion of it has since progressed my disease to a whole new level of severity.

The Myalgic Encephalomyelitis Awareness Week during which I was able to attend this rally completely changed my outlook. I was able to gain a voice, a network of fighters, a bit of validation, a bit of empowerment.  As soon as I walked up and put my empty shoes on the steps with all of the others of those who are missing from life... The tears started streaming down my face, which continued on and off throughout the event as I was hit by powerful waves of emotion.

You will notice in the pictures I had to use tools to mitigate my symptoms, sensitivities, and processing disorders due to this disease.  The easiest way to do that is to limit incoming stimuli.  The neck pillow helps support my neck pain. The hoodie on it along with the sunglasses blocks out light, peripheral vision, painful eye contact. The noise cancelling headphones block out distracting background noises and make close/loud noises less jarring. My service dog in training was to help keep me upright and treat my symptoms as well as provide both physical and emotional support.

My Facebook post that day:
"POWERFULLY CATHARTIC & EMOTIONAL:  Crashing super hard right now but totally worth it. Grateful to all those who had the strength to come out,  to all of the public speakers, to everyone who is here supporting someone who couldn't, and for the opportunity to feel like maybe my voice was heard, even if just for a moment.  Glad I made it out there and glad I made it home safe."

#MillionsMissing  #MEAwarenessDay #MEAction  #CanYouSeeMENow  #DoctorsCantDianoseMe  #WeJustDisappear

Myalgic encephalomyelitis demonstration rally on the steps of City Hall in San Francisco, May 12, 2018 -- International ME Awareness Day... I was crying in many of these photos.