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Saturday, October 28, 2017

You Have Cancer; You Just Lost Access to Healthcare

Elisabetta Renosto 
I was recently diagnosed with cancer for the second time. The day before surgery my eye malfunctioned. That malfunction is very possibly the result of a chronic illness that was not treated a few years back when I did not have health insurance because of a technicality. Or that malfunction could have just been bad luck.

My current health woes would be vanilla, run-of-the-mill, not life-threatening, with reliable access to healthcare. They are nothing exotic, especially not for someone my age. They are manageable.

About a week ago I learned that I'd shortly be losing health insurance because of a technicality.

A technicality. A pencil's tremor on an official page. Not my pencil. Not my page.

I've been going through waves of horror – "horror" really is the word – ever since Trump was elected. Team Trump's vow to "repeal and replace" Obamacare is always followed by public discussions held on Facebook pages and in media of whether or not the sick, the old, and the poor – me – are life unworthy of life.

I have not talked about the horror much because people get bored, and I don't blame them. I get bored, too.

I tried to talk to someone who was supportive five years ago when I was first diagnosed. He wrote off my mentioning this new diagnosis to him as my being "manipulative."

Dealing with it alone. Nightmares at night. Tension during the day. Hopelessness.

Satan whispers to me as he whispers to all of us who are desperate. Since I am a Christian, I do not listen, but believe me, I do hear, and I understand why some people throw in the towel, engage in self-harm, commit crimes, are anti-social.

Just this minute I took a break from trying to talk about it in this blog post. I visited Facebook. I saw a comfortable woman, who does not work – she is supported by the man in her life – posting about how "cruel" it is to aid the poor.

They say, "Oh, you don't have healthcare because you are a lazy scammer, parasitizing the system."

I say: I got my first paycheck at age 14. Before that, I had done the usual kid cash economy work, like babysitting. I also cleaned houses for money – before age 14 and as recently as the year I received my PhD. I lied about my age to get that first job. I worked as a nurse's aide through high school and college. I often worked full-time, changing diapers, feeding patients, ministering to bedsores. And, though working fulltime to provide health care to others, I had no health insurance. That is how it has worked with most of my jobs. No health insurance offered, even if working full-time.

I served in Peace Corps as a teacher. I worked as a teacher back in the US, also cleaning houses when not teaching. As a grad student, I worked as a cashier, a live-in domestic servant, a landscaper, and a carpenter.

I went to Indiana University as a grad student, was harassed by a crazy professor who was allowed to get away with murder because she was black and female, and everyone was afraid to confront her for fear of being called "racist" or "sexist," IU asked me to testify against her, testimony took an entire semester, during that stressful period my inner ear malfunctioned, and I became very ill and unable to work. I had, at times, to be rehydrated intravenously, the constant, uncontrollable vomiting was so dehydrating. My eyesight was wrecked by something called "nystagmus." I was so overcome by vertigo I couldn't walk across a room.

The judge denied my request for SSDI. He was removed from the bench for unfairly denying the claims of women. Discrimination. Misogyny. His being recognized as a bastard and his temporary removal from the bench didn't get me SSDI. I survived on nothing. I wore shoes till my feet were hitting the pavement through the holes. I ate from food banks and dumpster diving.

Over the course of six years, I received three experimental, pro bono surgeries. The third deafened me, but stopped my symptoms. I became functional again. I wrote my dissertation, which became a prize-winning book. I got my PhD. I hit the job market, applied for hundreds of jobs, and could only find low-pay work as an adjunct, work that offers no health insurance.

Because the market is tight, I am now old, I wrote a dissertation about Polish people, which doesn't help in the job search at all, and maybe hurts the job search, because I was out of the job market for the years of illness, and because, as I was frequently told, I am "the wrong ethnicity" and "too right-wing" for a college teaching job, though I am merely to the right of the Yippies.

Still want to call me lazy? I want to ask the people calling me lazy, and therefore life unworthy of life, have you done all the jobs I have done?

"Yeah, but," they say, "poor people in the US can waltz into any ER and receive all the free medical care they need."

This is a lie.

It's a lie people tell to feel good about the atrocities made inevitable by America's health care mess.

No, poor people cannot waltz into any ER and receive all the free medical care they need. Anyone who says this should be called out for lying.

"Yeah, but," they say. "You brought it on yourself. Cancer is a disease of self-indulgence." Yes, someone really said that to me.

Me: Fresh fruits and vegetables every day. Little meat. No nitrates or hydrogenated oils. No donuts, no snack cakes, few chips. I have never eaten in a fast food restaurant. No smoking. No drugs. Little drinking. Exercise daily. Go to bed early, sleep eight hours, get up early.

"Yeah, but," they say, "why should I be taxed for your bad luck? Just go die, and decrease the surplus population."

My response: I've been paying taxes all my life. I pay taxes now. I pay taxes for your and your kids' education, though I do not believe in or approve of public education. My immigrant parents, who had no schooling past grade school, did manual labor to put six kids through Catholic school. I paid for my own schooling, except for a few scholarships and fellowships here and there, straight through to my PhD. Yes, I paid tuition even when earning zero dollars thanks to the illness. Thus I lost my life savings.

But I pay taxes for your and your kids' education. And I don't gripe about it. I haven't had a car most of my life, and I pay taxes for roads. And I don't grip about it. I'm paying taxes for some "war on drugs" that I don't approve of at all. If people want to take drugs, I say let them take drugs. I pay taxes for wars-for-oil that I don't approve of, wars fought so that you can put gas in your tank. I do gripe about that.

I am proud to pay taxes. I consider myself lucky to be American. It astounds me when rich people gripe about paying taxes.

"Hey," they say, "I believe in the free market. In capitalism. In laissez-faire. The government should not be involved in medical care."

This big fat lie bugs me most of all.

There is no free market, no laissez-faire medical care in America. Not for anyone. Not that's legal, anyway. No patient and no health care professional in the US is standing alone, acting as a free agent, doing whatever he or she wants. Every patient and every health care provider is a strand in a much larger web, and must comply with the entire web to make any move.

Don't believe me? Walk into a drug store and purchase a garden variety antibiotic. You can't. You need a prescription. You need a doctor. That doctor needs permission – to see you, diagnose you, prescribe for you. That doctor is part of a much larger web of medical schools and hospitals and insurance programs, and my tax dollars underwrite every strand in that web.

If we had a real free market I could sell one of my kidneys to subsidize the rest of my body's health, and someone could buy that kidney. But that's legally impossible in America.

Read this article at Forbes: "Unspeakable Realities Block Universal Health Coverage In America." And stop this nonsense of pretending that you are some pioneer in the Wild West getting the medical care you need by dint of your wits and gumption. You are not. You are just another strand in the web, the web that supports you, that I subsidize, and that, all too often, shafts the poor.

Me? I'm not informed enough to know the best health care solution for America. I can't advocate for single-payer or Obamacare. All I can do is talk about how this or that system is working for a non-entity like me.

And then, they say, "I am pro-life."

No. You are not. You can't be "pro-life" and against health care for poor people. Sorry. Uh uh. It doesn't take a rocket scientist to see through that industrial-strength hypocrisy.


Update. I made many phone calls. I attended many meetings. I told virtual strangers my most private financial and health concerns.

During one meeting, a very tall man spoke on the phone to another person who doesn't want this to be happening, would like to help me, but has no idea what to do. I could hear both of them. "Trump … yes lots of working poor people … this is how the system works … they just go off and die … what are ya gonna do. You do what you can and you can't let it get to you."

I fought back tears but then I began to cry so much that I had to get up and leave the room even though the meeting was not yet over.

A man stepped up to offer a possible solution. The man who offered a possible solution is probably a Muslim. This does not surprise me. I have been helped by Muslims before. I remember moments like this. Though I do criticize Islam, I refuse to condemn all Muslims. They are people just like me, and, just like me, they are working with the best options and the best information they have at any given moment.

This man's solution may work. His plan jerks around that pencil on that page, tries to erase its life-destroying motion, tries to rewrite the factoid that could kill me. It will require participation from a few people. All are on board. We'll find out sometime next year if this plan works.

Meanwhile I try not to think about it, and when I do think about it, my jaw clenches, and my knuckles go white. 


  1. It sucks.

    I wish I knew what to do.

  2. Hope it works and you get coverage. I can not wait until we're through the Trump presiduncy - the End of Daze - and a working health care system is put in place.
    Even wit insurance it's rough. Recently had two hospital stays and three operations and the bills are staggering.

  3. If worse comes to worse, you could commit a crime and go to jail. Then you'd get treatment...

    Sorry, lousy attempt at gallows humor. But I think that at some time it will look like a sensible proposition.