Thread by @VABVOX

THREAD 📌♿️

In one of the universe's great ironies for me #WomensEqualityDay is also the anniversary of my being paralyzed.
It has been an incredibly difficult time. My life as I knew it was derailed. Yet the journey from rage to living my life with purpose is worth sharing.
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What began as a small nagging pain became the worst pain I had ever experienced--worse than labor,worse than 22 surgeries. The first hospital failed me catastrophically. They didn't listen to the details of what I was experiencing even as the one test they did proved me right.
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I was bleeding to death.
Slowly, steadily the treatment I had been on for a year had caused a catastrophic bleed at the back of my abdomen that pushed along my spine, down the neural pathways to my legs & within a week, paralyzed me. I have been in constant severe pain since.
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The 2nd hospital save my legs and my life, preventing "compartment syndrome" in which the blood flow to limbs diverts in such a way that gangrene sets in and amputation becomes essential to survive.
I was lucky I didn't die and was only paralyzed.
Yet I did not feel lucky.
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During the time I was in the 2nd hospital, I had to fight for care and even survival. Not just for me but for other patients. I had to call hospital hierarchy from my bed in ICU, I had to bring in all my journalistic savvy to hold people accountable, demanding what I needed.
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The trauma center saved my life, the after care nearly killed me.Patients are in charge of themselves in American hospitals. I didn''t have the same experience in London or Toronto. I had to plead for folks in my step-down unit to not be put,homeless & sick,back on the street.
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I was sent home with no explanation of how to live as a paralyzed person. I had to fight to get a hospital bed for my home. I had huge thigh to ankle braces on my legs & no one explained how to maneuver these. I was in a state of utter despair and had to somehow access care.
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The suddenness of the paralysis had left me no time for the stages of grief and acceptance. I got the first twinges of pain on a Friday night, went to the 1st hospital Sunday, was released Thursday night and taken by EMS, screaming in pain, to the trauma center 12hrs later.
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It is 1,095 days since I was paralyzed. Within two weeks of being released from the hospital, I had to return to work. I had written a few columns from the hospital. As a member of the much-vaunted gig economy, I had no sick leave. My hospital bill was $260k. It was very hard.
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Those 1,095 days have been spent trying to get help. I'm a well-educated white journalist and it has been absolute hell navigating this broken system. I became an advocate for others because I had to. When Bernie Sanders says the system wants people to die, he's not wrong.
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For three long years I have had to find a way to do investigative journalism from a hospital bed in my house. I have had to fight for physical and occupational therapists and nurse practitioners to come to the house to treat me. I've had several cancer surgeries in that time.
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I have tried and failed to get durable medical equipment I desperately need for my quality of life: a motorized wheelchair, a stair glide and a wheelchair lift, none of which my exorbitant health insurance will pay for.
Every day I think: we can and must do better for people.
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I know many will have already stopped reading, so I'll end saying, I am not at peace with what happened to me but I feel blessed to be alive. I am blessed that I was able to turn my rage into helping others struggling with similar trauma. I am blessed to have a strong voice.
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I am blessed to have a wife of 20yrs who has stood by me and loved me through the rage, the excruciating pain & how our lives have been altered. I am blessed that this community has introduced me to #disability activists so I could learn to be of better service to others.
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I wanted to share this story because I know others have had catastrophic health crises & I want people to know we can never give up: Someone needs our voice, our help, our hope, our succor. We have to model strength & vulnerability. We have to model staying alive.
Thanks.💜🌿
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