"FOR THE FIRST TIME, I GOT JUSTICE; THE WARRIOR THAT IS MAYA KOWALSKI; THE DISEASE WE SHARE

"FOR THE FIRST TIME, I GOT JUSTICE"; THE WARRIOR THAT IS

MAYA KOWALSKI "; THE DISEASE WE SHARE

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INTRODUCTION

     When Maya's case finally made it to trial, to television,

to trial, I, personally, was suffering, also, for 16 years at 

that point, with CRPS. CRPS is a rare, often misunderstood,

neurological pain condition of unknown ideation; without cure.

CRPS is also known as Complex Regional Pain Syndrome, RSD,

aka, "The Suicide Disease."

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THE SUICIDE DISEASE

      So, why is it called the Suicide Disease? Even that simple 

question, demands a more complex and compassionate

response. 

      Firstly, because of the severity and duration of the pain in

affected areas. As many with CRPS know, its pain can come in

a multitude of forms. Sometimes the pain feels like someone

literally doused your hands in gasoline, feet in gasoline,

and being lit on fire. Not only lit on fire, but a fire that cannot

be put out. Sometimes, the pain feels like being naked outside

in the snow, while at the same time, someone rubs snow up and

and down your spine over and over. One can feel so cold, even to

touch. It's a sensation of "cold burn of snow"/frostbite. Except,

the sensation cannot be remedied by just jumping under 50 

blankets. CRPS is its own beast, with its own cruel rules, that

often defy logic; especially if you aren't the person experiencing

this pain. There are times, symptoms can come on, seemingly,

without a known trigger, and the pain of the flare is relentless

in its pursuit. There are other times, especially should I forget

my daily medicine, that my entire arms and both hands shake

and tremble. Initially, when I was injured, many years ago, I

would constantly break//drop plates and glasses that were

in my hands/as I learned to use my left hand/rebuilt strength

in my right hand. It was embarrassing enough when I was alone

and it happened; publicly, it was utterly gutting for me personally.

I wanted people to not notice. I wanted to blend in, I wanted

to be normal, like "everyone else."

    CRPS does not care about what you want, what you need,

what you think, who you love, or what you do. When it comes

for you, it randomly creeps in; quietly. Yet, can overnight,

erase your identity prior to "injury Incident".

    Then there is grief that you must endure too. Yet, this grief

is ongoing, and it affects not only yourself, but every contact

and interaction you have with another human being/friend/

family member. You must grieve the ENTIRE identity, that 

consisted of things that defined yourself, that you must say

goodbye to; and actively grieve for, because it has been erased;

that person does not exist anymore. These are the days where 

you have to crawl at the dirt of earth, to keep your head above 

water, sane; all while mourning and drowning in tears. Death

of identity makes "life", and what it might entail, a huge 

question mark of unknowns.  Lots of trial and errors. Lots of

innovative solutions in everyday life. 

    As if that task weren't might enough, you have to rebuild

your brand new identity , within the confines and boundaries

of your own pain. There are lots of mental frustrations; scenarios

of what you want to do vs. what your body allows you to do.

Constant push and pull, missed venues, tears, guilt, feeling

like a burden. There were times I felt that the world was moving

and changing around me, all the while, for me, time stood still;

I felt like I was looking into a window of my own life at time.

   These things, are just a few things that CRPS warriors have to

endure, daily, or as issues, restrictions, physical therapy become

part of the new normal that you never asked to have to build.

Though I know I cannot speak for all the CRPS warriors out there,

but I know I would be dishonest if I said I NEVER thought about

the awful "s" word mentioned above. The thoughts do indeed

naturally flow, with the territory that is CRPS. There have been

times, the amount of pain I was in, was so much, for so long, 

I would've done just about ANYTHING to breathe and STOP

hurting' if only for mere minutes. And, research backs up those

feelings and that data.

  CRPS ranks highest on the globally accepted McGill Pain index 

scale. It is above cancer pain, giving birth, and even kidney 

stones. It's both the intensity and the duration of the pain that

make it the true monster that it is.

   I was 30 years old when CRPS invaded my life, when pain

took over, and I was left to my own devices, without a manual,

with my world upside down. While that remains the most difficult

of realities I have had to face, what I cannot imagine is being

diagnosed with CRPS at 10 years old; much like Maya Kowalski.

    All the while, she was experiencing her own pain and hell,

that is CRPS, she was forced to stay in hospital, away from her

friends and family. She was allowed limit items, yet alone anything

"comforting" or a reminder of home. Maya fought against 

everyone that called her liar, that said her mom was crazy,

because of their supposed inferred superior knowledge.

She was tortured by John Hopkins, she was treated as anything

but fragile and in pain. Doctors, clearly uneducated on CRPS, would

openly call her a liar. I heard their "alleged" physical therapist,

said, "patient refused to try to do " ______ (fill in the blank).

Any physical therapist, worth their education, would be versed

in CRPS and its treatment modalities and how you must

slowly build muscle, would never start an entry into their notes

phrased in that manner. People with CRPS don't refuse to do

things. WE REFUSE to push past the limits of pain; of which only

we are aware. No psychics can be hired to know, the best CRPS

specialists, alike, still cannot know your pain was intimately

as "you" the patient. Against all odds, all will, I watched, through

the progression of trial, Maya fighting for it all; for TRUTH.

    Watching person after person, alleged professional after 

professional, steal her thunder, slight her, cause her pain,

take the stand. It was OUTRAGEOUS the amount of control the

CLEARLY unqualified doctors took it upon themselves, to

be the narrator of/for her pain. Medical gaslighting at its

finest. Rude, ugly, and raw; the American way.

   While I am on team CRPS for the rest of my days, and well into

year 17, I am now, more than ever, able to see the beauty

in simplicity. I too, can see, like the Northern stars in the 

night sky, the resilience, and bright guiding light that is Maya

Kowalski. Her fight for truth, was also a public one, with

a trial, and without privacy of any kind. Though we have taken

different journeys to arrive at CRPS, I remain grateful and

inspired by Maya's bravery; bigger than her body. 

    Much like the day in court, when the verdict came down, and

the "press" was talking with Maya after her landmark victory 

against John Hopkins, she said, " I just wanted my justice."

Translation: "Today everything I ever thought was true and

wrong, is valid. Your pain and tears are valid. It's valid to be 

angry; furious even. 

   I cried along with Maya, and her family, as the verdict was

being read, and Maya was validated in he truth for first

MEANINGFUL TIME. Her tears were from being overwhelmed

with feelings of "justice". After all, ever since she was 10,

and separated from her mother by the hospital, she has been

fighting for it all. Those of us with CRPS are built for resilience.

We love being under-estimated. One thing remains true,

personally to me, I will always have the utmost respect and

admiration for Maya Kowalski and who she decides to become

with her years. I'm appreciative that she made her story,

and all its vulnerabilities, available, for ears to hear,

and for the bell of compassion to ring. Maya educated so many

people, that, otherwise, might never have known what CRPS was,

and the education and realities of what her fellow warriors face.

  Though we may never meet, or talk, in real life, my hope is that

someday, somewhere, somehow, Maya will read this. With

the hope that she knows she has an army waiting to embrace her;

an army of fellow CRPS warriors of all shapes, sizes, colors, and 

ages. Many of whom she brought together by the telling of her

CRPS truth, on the stand, for the world to see. I remain forever

indebted to her trailblazing. Maya Kowalski, what you did,

in fighting for it all, educated and validated more people than

you could ever imagine. Don't stop dreaming and achieving;

possibilities, just like hopes, can be limitless. XX