On the high-achieving eldest daughter and the machine designed to break her.

TW: scary healthcare stuff, emotional abuse, parental neglect, late-stage capitalism horrors. 1200-ish words, no beta.

I depend on a Medicaid transportation service to get to my medical appointments. I have no car, no public transit, no one to call. So when that service doesn't show up — like it didn't this morning, for an appointment that's part of figuring out whether I have a fucking brain tumor — there's no backup plan. There's just: sorry, we'll have to reschedule.

I did everything right. I confirmed the ride. I texted the driver over the weekend. I had an actual conversation about pickup time. And still — Sunday night, no confirmation. Monday morning, no car. This is the second major appointment I've missed this way. In a row. I am devastated to the point of near catatonia. I can't pay $75 for a Lyft. I'm recovering from a heart attack. I want to give up.

To understand why this moment knocked me to my knees, you have to know where I was four short years ago. Because the distance between that life and this one is staggering.

Against the odds, I rose to the C-Suite at a multi-billion dollar healthcare company. It was a hard road. I didn’t have the ivy league credentials of my peers—I actually dropped out of college—but I had a mentor who gave me a chance and I worked my ass off. I was lucky. For decades I helped build that company. I led a staff of 40 hard-working, wildly creative people. The walls of our office were lined with trophies and industry accolades. I lived in gratitude. I was careful, humble. I was finally able to travel. I owned a home. I had savings. I had a fridge full of healthy food. I had a car and the freedom that comes with it and all the other things that are so ordinary when you have them that you forget they're not guaranteed.

Then the company was acquired by…wait for it…UnitedHealthcare. I was laid off along with my entire staff and hundreds of others. Two months later, on my 50th birthday, I was diagnosed with cancer.

What followed was the kind of unraveling that happens so fast you can't track it in real time. You only understand it looking back. Cancer. Then atrial fibrillation. Then gallbladder disease. Constant hospitalizations. No job meant my savings evaporated. I lost everything. And that was just the beginning.

This is when I learned something about family. I had been, for a long time, the successful one. The high-achieving eldest daughter. The one who flew everyone to Vail at Christmas. The one who drove a nice car, had nice clothes, a nice house, lavished everyone with gifts. The one people were proud of. I was the one who held the world together, the one who wasn’t allowed to fail. A workaholic - and that was seen as a virtue.

Turns out that version of family love has conditions attached that nobody mentions while things are going well. A daughter who's a relatively high-paid executive is easy to love. A daughter who's broke and sick and needs things? That's a different ask. They weren't interested in that ask.

So I added that loss to the list. The family who was supposed to rally around me was a mirage. It always had been. I am no-contact with my entire bloodline now, with a C-PTSD diagnosis to boot. That diagnosis was a true moment of clarity—the realization that my health issues weren't just bad luck, but likely a direct correlation to the emotional abuse and neglect I received growing up. Now I understand that all abuse is physical. You don't have to be hit to suffer.

A friend of 25 years took me in. I moved across the country into her home and tried to stabilize. And then I had an aneurysm. Emergency surgery. I nearly died. And then a heart attack. And then a cervical disc extrusion that compressed nerves and left me in the kind of pain that doesn't go away—it just becomes the new baseline you try to function on top of. And now my eye has started drooping, and I'm in the middle of an extensive workup to determine the cause of something called Horner's syndrome. One of the things they're ruling out is a brain tumor. And given my cancer history, time is of the essence.

That's the workup I've been trying to get to. That's the appointment the car didn't show up for this morning.

I know this system. I spent two decades inside it. I know how these companies are run, how they talk about patients in boardrooms, how the language of care gets deployed to cover decisions that are purely financial. I wrote some of that language. I believed in the mission of the company I worked for—genuinely, for a long time. And then I became a Medicaid patient in a rural community, entirely dependent on a sketchy transportation service to get to appointments that are keeping me alive. The gap between the mission statement and the reality is so vast it's almost funny. Almost.

The transportation service that stood me up this morning isn't an anomaly. It's a symptom. I'm not falling through a crack. I'm falling through a design feature.

When I called this morning and told them this appointment was to rule out a brain tumor—I said those exact words—it didn't spur them to action. There was a slight tonal adjustment meant to register sympathy, and then: we can't find another ride. I used to be on the other side of moments like this. I know how those conversations get handled internally. I'm not naive about any of it. And I am still sitting here genuinely shaken by how it feels to be the patient in that equation.

The cuts coming to Medicaid and Medicare aren't going to show up as a single dramatic event. They're going to show up as a ride that doesn't come. As an appointment that gets pushed back six weeks. As a diagnosis that arrives three months later than it should have. The healthcare system in this country is already operating well past its stress tolerance for the most vulnerable people in it. What's coming isn't a reform. It's an accelerant.

So, the boulder rolls back to the bottom. I walk down the hill, find my place behind it, and start pushing again. Because the car didn't show, I now have to wait two more months for a new appointment because of a specialist shortage in the region—sixty more days of praying that whatever is in my head isn't growing while my heart tries to heal. I will confirm the next ride. I will explain the urgency, one more time, to one more person who is paid not to hear it.

And I already know, before I even pick up the phone, exactly how it’s going to go.

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Postscript:

As I navigate this hellscape, the support from our community of freaky little sweethearts has been a literal lifeline. If you’re able and would like to help, you can find my Ko-fi here:

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