Sorry, But Socialized Medicine — Not Miracles — Saved My Life
Every spring for the last five years I’ve celebrated still being alive with friends and family. Spring 2022 has particular significance, since at one point the expectation I’d live to see this year was only about 50%.
Over the last half-decade I’ve encountered dozens, and honestly more like hundreds, of comments about my “miraculous” return from the brink of death. And while I, like all humans, revel in magical thinking from time to time, this is one area where it feels particularly important to slap a fantasy out of the air, and instead present a radical, provable truth:
Miracles had almost nothing to do with my survival. Privilege, access to care, and community were the thing itself.
I hope you’ll continue reading, and allow to me to explain.
It was April 2017 when I was released from Cleveland Clinic’a still-frosty Ohio campus with a diagnosis of CIPO (Chronic Intestinal Pseudo Obstruction, a NORD-recognized “rare disease” which can cause complete failure of the gastrointestinal system) and severe POTS syndrome; a liquid diet; and a long-term prognosis of total disability. A TPN port had just been yanked out of my chest, my C-Reactive Protein was chronically high, and eating by mouth still produced extreme abdominal distention with unmanageable pain. At that time, even with the help of a reputable hospital like Cleveland Clinic, I was still another 18 challenging months away from having a proper Ehlers-Danlos Syndrome diagnosis, something which made a lifetime of seemingly inexplicable symptoms (which doctors persistently mislabeled as “anxiety” or “mental illness”) finally make sense. My then-husband and I were both struggling with profound PTSD after a nightmarish 9 months of organ failure, flights to far away hospitals, weeks living in hospital housing, misdiagnosis, medical gaslighting, and wildly expensive treatment interventions ($16,000.00 for HBOT to heal a bleeding bladder, for example, paid out-of-pocket) which left us $0 in the bank account and no way to pay rent while managing the catastrophic cost of rehabilitation.
We had already spent $122,000.00+USD on saving my life, the majority of that fundraised through a GoFundMe campaign that — and if there is any miracle, it’s this — went viral.
As of this writing I’m finally off disability, running a sliding-scale health practice which helps patients like me, standing upright (?!) to perform as a musician again, understand how to advocate for myself as a patient even in the face of doctors with God Complexes, have a normal CRP, maintain a normal weight, and “struggle well” most days within the limits EDS puts on my body. I now take 4 daily medications — prucalopride, Low Dose Naltrexone, Ketotifen, and a small dose of Cymbalta — instead of the clusterf*** of 22 prescription meds, including highly-addictive opiates, I’d been forced onto by majority male doctors with zero understanding of Ehlers-Danlos Syndrome. These positive progressions were the complete opposite of what was expected in 2017, when even going back to school to be trained in health coaching and nutrition was a pipe dream.
So it’s not exactly shocking that the transition from housebound, totally disabled waif to mostly-functional oddball is often characterized as “MIRACULOUS” or “MAGIC!”
But it is only viewed as divine intervention by people who were not part of the awesome, deeply compassionate, and uncharacteristically devoted community which rallied around me when my organs started quitting.
THINGS PEOPLE DON’T KNOW ABOUT THIS RECOVERY STORY
1.$100,000.00 was donated by members of my local and extended community to help me purchase the care that my health insurer refused to pay for. Had that money not appeared, I would not have received an accurate diagnosis or proper treatment, and would have died. Full stop. I needed to be given the money to buy survival because my health insurance would not pay to treat a patient capable of recovery. That’s. Fucking. Criminal. And it is the standard in the American health care system today. I also have to recognize that my fundraising campaign went viral in part because of the privilege I enjoy as a white person who, at the time, was a newlywed with big blue eyes staring helplessly into camera lenses from a hospital bed…aka, the kind of sympathetic character Americans feel comfortable projecting onto. My peers in the trans community, as well as numerous patients who are POCs, rarely see their fundraising efforts take off the same way, because their outward presentation doesn’t “fit” what a many people with disposable income want their little heroes to look like.
2. Even with a massive cash infusion, the cost of my health crisis drove my spouse and I into crippling financial debt. 5 years later, both working full-time again, we still carry the weight of this debt. Our credit scores may never fully recover, and home ownership is a ridiculous fantasy for either of us.
3. Medical debt + medical trauma + ableism cost my spouse and I a marriage. The stress of poverty, emotional scars from crisis events, the insidious way PTSD undermines intimacy, and the horrendous way members of BOTH our families accused me of “faking illness for attention” or him being “stupid to marry a deadweight” undermined what could have been a terrific union under different, more privileged, circumstances. We divorced in 2021, are still close, and share a fiery hatred for the Western Medical System.
4. It took a village to rehab just one body. I did need not simple need a doctor the correct “cocktail” of medications. I needed literal months of diagnostic testing, followed by occupational therapy, physical therapy, PELVIC FLOOR physical therapy (which is different from regular PT), functional nutrition training, emotional counseling, trauma therapy, tens of thousands of dollars in special “allergen free” food, a job willing to accommodate my disability, plus a small team of compassionate friends in order to recover some daily function. Finding all of this, and then diving into it, took years. Today, it still requires regular maintenance. If I skip the maintenance, or backslide into unhealthy habits like eating junk food or skipping exercise because of legitimate pain, I relapse.
5. PTSD has made me as much of an outsider as disability did. I still am learning via weekly therapy sessions to regulate my emotions and “behave mostly normally,” since my therapist is kind enough to acknowledge there will never be a true normal for me. Folks are kind enough to call me “warrior” with some regularity, and while that’s very flattering, “warrior” by default means “traumatized person whose battle has made them different from normal people.” And while culturally we are starting to become more trauma-literate, collectively we —and I mean Americans especially — are terrible at actually making space for what people with PTSD are truly like, which is sometimes irritable, anxious, or unpredictable. I, like millions of military veterans or survivors of domestic abuse or kids subjected to school shootings or other patients gaslit by their doctors, have been rejected as “crazy,” “difficult,” “unlikable,” “annoying” or “weird,” because PTSD literally changes brain anatomy (YES, REALLY) and makes us different. I am called weird because I am, measurably, weird now. (Even weirder than my medical condition, which overlaps heavily with Autism Spectrum Disorders and “giftedness,” already made me.) And we, meaning humans, have a terrible habit of discarding other humans because the ways they have been broken make it hard for them to conform. We collectively need to do better at not just advocating for PTSD online, but practicing compassion for the broken people who can’t conform in our daily life.
6. Healing is long, arduous, frustrating, inconceivably expensive, isolating, and often more painful than being sick. It is, therefore, impossible to do alone. If the choice is “heal alone” or “stay sick alone,” staying sick IS actually the easier choice.
7. I wanted to kill myself multiple times during this journey. It was that hard and scary. It may, in the future, possibly be that hard and scary again. Had I not had a community of friends, family, and practitioners supporting me with tangible resources, I absolutely would have quit. If a person’s quality of life is zero? They don’t really have a “reason” to stick around for it.
Why do I share any of this?
Because “miraculous” recoveries rarely are miraculous, and we don’t really talk about that, because fairytales are significantly more pleasant than reality.
The problem with this cultural habit is that it makes us assume positive outcomes are miracles when they’re, in actuality, science and compassion dosed appropriately.
Positive health outcomes ARE actually possible, even in very complex cases, when we:
a) surround patients with compassionate, trauma-literate community
b) make sure patients have the money to afford clean, nourishing food, OR simply give them clean, nourishing food
c) present people with the opportunity to heal their trauma instead of medicating away its symptoms (depression, anxiety, ADHD, terror, anger, etc.)
d) believe patients instead of dismissing their valid concerns
e) factor quality of life into treatment protocols (if the cure is worse than the illness, it’s not a cure)
f) abandon our childish fantasies about a clean, pretty, linear healing process
Though I was incredibly grateful to have it, I would never have regained the function I currently have on Medicare/Medicaid alone — compassionate caregivers, cash donations, prescription assistance programs, and sliding-scale payment plans saved my life.
All are foundational elements of socialized medicine.
Too many patients with the same diagnoses, around my same age or younger, in treatment at the same time as I but given less support, have died needlessly these last 5 years. We mourn them needlessly. If every person was given the resources I was, more — not all, of course, but more — outcomes would be like mine. I am lucky to still be here, and can only pray all the other patients, friends, and neighbors in this country will finally be given access to the care I was.
For-profit health care is a death machine killing valuable members of our community.
I hope you’ll consider sharing this piece with someone who might need a better understanding of what it truly takes to heal. Or with someone who is struggling with healing, and could feel better knowing it’s okay that they’re struggling. Or with someone who argues that “the free market will save everyone,” because I would be happy to assure them personally it will not.
To everyone who helped me heal, I love you, it mattered, and you matter.
And thank you to photographer Robert X. Fogarty and his @dearworld project for this portrait.