Sorry, But Socialized Medicine — Not Miracles — Saved My Life
Every spring for the last five years I’ve celebrated being “not dead” with friends and family. Some might argue this is, on some level, what all birthday parties are. But our tribe does not fete my survival during my birth month. Instead, we raise glasses of mocktails every March, the same month in 2017 a team of very capable doctors at a national research hospital broke the news my chances of making it to 2022 were around 50%.
This year was particularly satisfying, since I elevated that chilled copper mug of non-alcoholic ginger beer and crushed mint leaves while off Social Security Disability Insurance for the first time in years, and with a healthy BMI of 22. Small potatoes for healthy folk, but a major accomplishment for patients with inherited diseases like Ehlers-Danlos Syndrome.
Over the last half-decade I’ve encountered too many comments about my “miraculous” return from the brink of death to count. Like all humans, I revel in magical thinking from time to time, but this is one area where it feels important to slap a fantasy out of the air and instead present the radical, provable truth:
Miracles had nothing to do with my survival. Privilege, access to care, and community were the thing itself.
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 failure of the gastrointestinal system) and POTS syndrome. I was on a liquid diet, with a long-term prognosis of total disability. A TPN port had just been yanked from my chest, my C-Reactive Protein was chronically high, and eating by mouth still produced extreme abdominal distention with unmanageable pain. I was stable enough to go home, but far from “cured.”
At that time, even with the help of a reputable hospital like Cleveland Clinic, I was still another 18 challenging months from having a proper Ehlers-Danlos Syndrome diagnosis, something which made a lifetime of inexplicable symptoms — which doctors persistently mislabeled as “anxiety” or “mental illness” — finally make sense. My then-husband and I were both struggling with severe PTSD after a nightmarish 9 months of organ failure, flights to far away hospitals, weeks living in hospital housing, misdiagnosis, medical gaslighting, and some wildly expensive treatment interventions. ($16,000.00 for HBOT to heal a bleeding bladder, for example, not one penny of which covered by insurance.) These trials had left us with $0 in the bank account, and no way to pay rent.
We had already spent $122,000.00USD saving my life, the majority of that fundraised through a GoFundMe campaign that. If there is any miracle in my narrative, it is that this fundraising effort went viral.
As of this writing I’m back to full-time employment, running a sliding-scale health practice which helps patients like me, standing upright to perform as a musician again, and fully understand how to advocate for myself and similar patients. I have a normal CRP, and “struggle well” most days within the limits EDS puts on any afflicted body. I take 4 daily medications — prucalopride, Low Dose Naltrexone (LDN therapy), ketotifen, and a small dose of Cymbalta — instead of the clusterf*** of 22 prescriptions I’d been forced onto by male doctors with zero understanding of EDS. All of these positive progressions are the opposite of what was expected in 2017, when tubes were being put in my chest to feed me dextrose through my heart.
So it’s not shocking that the transition from housebound, disabled waif to mostly-functional oddball gets characterized as “MIRACULOUS” or “MAGIC!”
But it’s 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 went on strike.
THINGS PEOPLE DON’T KNOW ABOUT THIS RECOVERY STORY
- $100,000.00+ was donated by members of my extended community to help purchase the care 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 insurance would not pay to treat a patient capable of recovery. This is criminal, but standard in the American health care system today.
- My fundraising campaign went viral in part because of the privilege I enjoy as a white person. This is not meant to be inflammatory, just honest. At the time, I was a newlywed with big blue eyes staring helplessly into camera lenses from a hospital bed…which is to say, the kind of character most Americans with money feel comfortable projecting onto. My sick peers in the trans community, as well as numerous patients with the same condition 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, they are denied the help I received.
- Even with a massive cash infusion, the cost of this 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 daily. Our credit scores may never fully recover, and home ownership is a ridiculous fantasy for either of us.
- 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 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 circumstances. We divorced in 2021, are still very close, and share a hatred of the Western Medical System.
- It took a village to rehab one body. I didn’t simply need a doctor to assign me the correct “cocktail” of medications. I needed literal months of diagnostic testing, followed by more months of occupational therapy, physical therapy, PELVIC FLOOR physical therapy, 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 team of compassionate friends in order to recover some daily function. Finding all this took years. It still requires regular maintenance which can be exhausting. If I skip the maintenance, or backslide into unhealthy habits, like junk food or skipping exercise because of pain, I relapse. The village keeps me from backsliding. If someone doesn’t have a village, it is significantly harder to achieve and maintain any quality of life. This is a universal part of managing any chronic medical condition.
- PTSD has made me as much of an outsider as disability did. I still am learning via therapy to regulate my emotions and “be mostly normally,” since my therapist is kind enough to acknowledge there will never be a true normal people like me. Well-wishers in town call me “warrior” with some regularity, and while that’s flattering, “warrior” is coded language for “traumatized person whose battle has made them different from normal people.” And while culturally we are starting to become more trauma-literate, collectively Americans are terrible at making space for what people with PTSD are truly like. We are sometimes anxious, tense, or unpredictable. Like millions of military veterans or survivors of domestic abuse, I’ve been harshly assessed as “unlikable,” “annoying” or “weird,” because PTSD literally changes brain anatomy. (YES, REALLY.) I’m called weird because I am, measurably, weird now. And we, meaning humans, have a terrible habit of discarding other humans if something they’ve endured undermines their ability to conform. We need to do better at not just advocating for PTSD online, but practicing compassion for the broken people we meet offline.
- Healing is long, arduous, frustrating, inconceivably expensive, 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 the easier choice. Which is why #4 is so important.
- 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 would have quit. If a person’s quality of life is zero, they don’t have much of 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. Fairytales release so much more dopamine when we hear them.
The problem with this cultural habit is that it makes us assume positive outcomes are miracles when they are, in actuality, science and compassion dosed appropriately.
Positive health outcomes are 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 childish fantasies about a clean, pretty 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, my same age or younger, in treatment at the same time but given less support, have died needlessly these last 5 years. 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 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. This is an uncomfortable truth to hear, and even harder to speak aloud. But it is true.
I hope you’ll consider sharing this piece with someone who might need a better understanding of what it truly takes to heal. Perhaps you can forward it to someone struggling with healing. If someone you know argues “the free market will save everyone,” please send them my way, because I would be happy to assure them it will not. We have to release magical thinking and fairytales in order to save people worth saving, and this difficult conversation is part of following through on that objective.
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.
