Editor’s note: This story reflects an individual’s experience and is not an endorsement from The Mighty. We believe in sharing a variety of perspectives from our community.
“I’m sorry, but your health insurance has decided not to pay for your chemotherapy.”
The moment I finally realized what it meant to be poor and sick in America, I was sitting by myself in the cancer center an hour from my home. I had arrived early for my infusion that day, checked in and gotten that day’s hospital bracelet. Before I could be hooked up to an IV, I was pulled into a side room, and told my insurance had declined my claim. Unless I could pay the $15,000 the single infusion would cost, I had to go home — without my medicine.
Without insurance, my treatment would cost me $130k a year — more than four times what I made annually. I thanked the woman and pulled the hospital bracelet until it snapped from my wrist.
I managed to make it downstairs to wait for my ride before I started sobbing. I was 25 and had just been told the countdown to my death had begun — all because my life was bad for their bottom line.
This is the reality that Mitch McConnell and Senate Republicans seem to want to take us back to. It’s the reality that Paul Ryan and Donald Trump celebrated together in the White House Rose Garden. And it’s a reality in which I cease to exist.
When you’re chronically ill, you get used to the concept of your own mortality.
I first started getting sick so early in life, I don’t really know what it’s like to be a healthy person. I could explain the specifics of my incurable disease as good as any med school student before I was out of middle school. Hospital stays, specialists, and endless parades of needles are just a necessary part of my existence. So is thinking about the prospect of my own death. Ask any kid who grew up with a chronic illness — I guarantee they’ve thought in elaborate detail what they want their funeral to be like.
You also get used to thinking about whether you’re a burden on the people you love. The first time I can remember asking myself that question, I was 12. I had seen the tears in my mom’s eyes as she worked on the family budget at the kitchen table. I knew the medications that kept me alive were expensive, but that was the first moment that I started thinking about where that money came from. That was when I realized paying for them might make other things — like the mortgage payment or keeping gas in the car — harder to do.
That month was also the first time I ever thought about suicide. I didn’t want to die, but for the first time I had started to wonder if life for my family might be easier if I wasn’t alive.
That same worry was what made me refuse to go to the emergency room until my intestines nearly exploded.
I was 24, and I’d spent weeks lying on an air mattress in my living room. I was in too much pain to sleep, my hair matted to my head from the kind of sweating only pain can cause.
My partner kept begging me to go to the hospital, but it wasn’t until the pain got so bad that I thought it would kill me that I agreed to go. I was in too much pain to walk to the car, so he had to carry me. At the hospital I couldn’t stop rocking because of the pain, and the nurse asked him to hold me still so she could take my blood pressure. He gripped my shoulders so tightly I had bruises across my collarbone the next day, but I barely noticed. The world — my world — had shrunk down to just the icy hot core of my pain.
The emergency room doctor later told me my intestine had completely swollen shut and that I might need surgery. All I could think about was how I didn’t know how I was going to pay for this visit and pay next month’s rent.
Donald Trump, Paul Ryan, and House Republicans celebrated in the White House Rose Garden when they passed their version of repeal. This is what that looks like for me.
When you’re poor and sick, life is an endless series of calculations like that. How much pain can I tolerate? Is the fever bad enough to require an appointment? I’m in debt to that doctor — will they even see me again?
These are the kind of calculations that leave you several molars short by your mid-20s, because pulling the tooth is cheaper than a crown. They’re the kind of calculations that equal lying to your doctor about whether you’re taking all of your meds, because you’re too ashamed for him to know you just couldn’t afford one of them.
If you’re lucky, your doctor will slip you sample boxes of the medications you need. It’s an uncertain and temporary solution, but one that gets you through the day. If you’re not so lucky and your doctor isn’t the type to do that or it isn’t a medication you can get samples of, like my chemo, you have to look for other solutions.
For some low-income, chronically ill patients, that solution looks like a GoFundMe page. For others, it’s an endless string of loans and doctor switching as the bills pile up. For me, at least at first, it was a low-income chemo clinic I was lucky enough to get into — the same clinic that prisoners with cancer are taken to.
When the low-income clinic runs out of beds, sometimes you’ll get your chemo on a metal folding chair in the hallway.
Other times they’ll run out of folding chairs and you’ll sit on the floor. But there’s an odd sense of camaraderie in it — like some bizarre form of summer camp, where some of the campers are in shackles and the counselors are run ragged with a never-ending line of desperate campers.
The low-income clinic I went to was a complete 180 from the cancer center I had started my treatment at. There, every patient got their own room with a hospital bed and volunteers walked around during Christmas season with giant trays of cookies. There wasn’t any of that at the low-income clinic. But I was so grateful to have gotten into the clinic at all — I knew there were hundreds of patients that weren’t so lucky.
Eventually, I became one of those patients again. I got a kidney infection from the chemotherapy, and by the time it had been treated, I’d lost my spot at the clinic and was bumped back down to the bottom of the list.
They don’t tell you this, but the bottom of the list is where people go to die.
When I was younger, sometimes I would pretend I was already dead. I would lay in bed with the sheet pulled over my head, seeing how long I could hold my breath, pretending it was my funeral. I would imagine my parents standing over my sheet coffin. I’d think about which of my friends would talk at the service and wonder what they’d say.
In the eighth grade, I missed more than a quarter of the year because of illness. Instead of making mixtapes for my crush like my classmates, sometimes I’d think about what songs I would want played at my funeral.
Eventually, I got older and developed the ability to emotionally process the reality of my incurable disease in a way that children are incapable of. I haven’t made myself a sheet coffin in nearly two decades.
Lately, though, as Republicans in Congress sprint closer to repealing the Affordable Care Act (ACA), I find myself starting to think about those things again. What songs do I want played? Who do I think will cry? Who will hold my mom’s hand and make her feel better?
That’s the thing I think about the most. I hope someone is there to hold my mom’s hand.
At 30, I’ve decided I don’t want to be buried. I’d rather be cremated. At night, I have a recurring dream where my mom, my brother and friends — all the people that love me — take my ashes to Capitol Hill and pour them on the desks of each politician that voted to take away my healthcare.
I wish I could call that dream a nightmare. I wish it was the scariest thing I could think of. But it’s not. It’s only a dream. I know that at the end of it all, I’ll wake up and still be here, still be alive.
The nightmare is the one I can’t wake up from. It’s the one that turns out to be real.
The nightmare is the reality Mitch McConnell and Republican politicians are creating for people like me.
The nightmare is that being poor and sick in America is a often death sentence.
This post was originally published on Medium.