It’s July 21st and I am tapped out. I am physically and mentally depleted to the extreme. There is a deep sadness I am fighting to keep at bay. I can feel it at the periphery, threatening to latch onto me, digging its claws into my already bleeding heart.
I’m just back from protesting outside of United Healthcare’s headquarters in Minnesota and it’s worth every ounce of pain. I try to never allow what I am feeling to the forefront of my mind. It’s a skill that’s taken me years to acquire, and it’s a constant struggle. It’s the ability to separate from the neuropathic symptoms I live with daily, primarily caused by CRPS (Complex Regional Pain Syndrome) and SFN (Small Fiber Neuropathy). It is nothing short of torture that is never gone, not even in my sleep. At times it feels as if I am walking on broken glass while my body is wrapped in barbed wire that cuts into me with every step. I feel as if I am on fire, or like I have a horrible sunburn and I’m forced to remain unprotected in the hot sun. It’s torture that never ends or ceases, yet I’ve learned to live in spite of it. It’s a lot of work, so when I do things that I’ve spent days or even weeks preparing to do, I know that afterward, it might take weeks or even months to recover.
When someone like me chooses to spend their time with you, it truly is a big deal. When they will stand with you, it’s costing them dearly and they have deemed you to be worth every ounce of it. That’s a level of love and respect far above “normal” participation. So when you stand with me, you become etched into my very being as a part of me.
The sky clapped with thunder as I stood unmoved by the strong winds beating the rain down on my see through rain poncho. I stood with 150 or so of my friends, some beating on drums to the rhythm of the chant, “Every claim you deny is one more life left to die,” calling out United Healthcare’s excuse for what they consider healthcare.
Standing my ground in front of the United Healthcare headquarters, I clutched the bullhorn, yelling out the pain. Taking off the chains and letting the suffering I keep pushed way down to rise to the surface. Unleashed I cried out “I DON’T WANT TO DIE!” A part of me wants to crumble under the weight of the words. I’m so very tired of begging to live. I’m angry that we have to do this. I had to watch an 80-year-old doctor hunched over as he is escorted under arrest by police to an awaiting squad car. Arrested for wanting to save lives. The truest example of a healer is essentially out in chains while fighting for lives.
It’s been a product of my life, starting when I was very young, being called by my mother’s name and having no identity truly my own. Being screamed at and beaten was a regular day for me. Pushing down the pain and fear is something that I am good at, as I’ve become an expert. The day that I realized why I could handle my symptoms better than others, I lost all control. My body heaved in a full-on anxiety attack while the contents of my stomach tried to force its way out. My therapist was concerned, staring at me through the computer screen as I finally stopped heaving and crumpled in my chair. Accepting the reality that my life had set me up to take it. That I was good at dealing with it for horrible reasons. With realization came acceptance and the ability to now talk about it without shame.
When my skin punch biopsy report came back in 2020, my neuro provider came into the room waving the results overhead all the while saying, “I don’t know how you are walking, never mind treading water. THIS is validation!”
Explaining to me that my body is destroying its own small nerve fibers, having found none left in my epidermis and less than 1% of normal in my dermis layer, and that hurt my ability to feel the ground I walked on. This explained a lot. There really isn’t anything that can be done. There is no cure or way to grow back what was created in the womb. I have to be careful. I’ve hurt myself and not known it until I saw it in a mirror, part of me failed to function, or someone else noticed. I will push past the feeling that my hands are being poked with thousands of tiny needles as I pick up a cup to drink from, or each step I take feels like shards of glass in the bottom of my feet.
With medications, treatments, and strict rules that I live by, I have created a life worth living and a purpose beyond myself. This brings me to standing in front of United Healthcare’s Headquarters in Minnesota screaming, “We ALL want more time with our loved ones! DO YOU HEAR US?”
Even now it breaks me, and crying on the keyboard is simply a fact of my new life. We, People’s Action, demanded they stop delaying and denying medical care to millions of patients. We held signs with pictures of their million-dollar homes and Gulfstream jets that they buy instead of paying for my ketamine infusions or another person’s life-saving medication, like insulin.
They make about eight billion dollars in profit every quarter; that’s every three months! While they count their riches, we stand in the pouring rain. Some even on the road risking personal safety to block traffic, to stop those employees of United Healthcare from coming into work that Monday and denying your child’s chemo or emergency critical care. When a family is facing the possible loss of their child, they shouldn’t have to start a fundraiser just to pay for necessary treatment.
It’s far beyond time that we the people stood up and ended the corporate fleecing of America. Our hard-earned tax dollars are paid into medicare premiums, only to be put into the greedy hands of United Healthcare, rather than paying for care and saving lives.
That’s what I did on July 15th, one day before my birthday. Flying home on July 16th, despite the delays and how much pain and burning I felt, I did so with the knowledge that we had raised an alarm. Having ignited some hope, it was the best birthday I ever had. Now we need you to kindle that flame into a fire of change.
To find out more visit People’s Actions Care Over Cost Campaign.
**The opinions expressed in this piece are my own and not representative of any of the organizations I help. Don’t like what I wrote, help me change it.