What we don’t talk about when we talk about health care

I am going to repost the following blog that first appeared here in 2009, just as the “debate” (prolonged screaming match, really) about health care reform was really picking up speed. I think it’s worth rereading not only because today is the third anniversary of Liz’s death, but because there are still yahoos in this country who think socialized medicine is a bad idea. They voted in staggering numbers for leaders who want to repeal the teeny, tiny steps taken towards health care equality in this country, probably because they persist in the belief that terminal illness will never happen to them or anyone they love.
I recently had the pleasure of reading the new book Cover Me: A Health Insurance Memoir, written by fellow Carleton grad Sonya Huber, and interviewing her for an upcoming piece in Literary Mama. I can’t recommend the book enough. Sonya writes beautifully, and her tale of cobbling together coverage for herself, her husband, and her infant son through a series of soul-draining but morally noble non-profit jobs and graduate programs will be recognizable to anyone living on the fine line that separates the almighty middle class from ….well, everyone else. Sonya writes with humor and grace, but also with urgency, painfully aware that lives are on the line–and deaths are, too. Liz would have loved it.
Gone daddy gone
August 9, 2009

Not long ago, Matt commented on something he’d read in the newspaper: “It says here that heart disease is the leading cause of death in this country,” he said. “If that’s true, then why do we know so many people with cancer?”

Good question. I wondered if it was because of our demographics–as thirtysomethings, we tend to hang with folks whose cholesterol profiles have not yet caught up with them. We eat cheese and drink beer with abandon. “That still doesn’t explain all the cancer,” he grumped.

This weekend Matt is on the east coast visiting a good friend and cancer survivor. It is a trip I made several times myself, before my own east coast friend succumbed to the disease in late 2007. This week alone we experienced both of cancer’s schizophrenic extremes: a diagnosed family member received wonderful PET scan results, while an old friend from high school had a five hour operation to remove a tumor from her brain.

I’m at a breaking point. I AM QUITE LITERALLY SICK TO FUCKING DEATH OF ALL THIS CANCER. It doesn’t help that the national nightmare that is health care reform in this country has brought end-of-life care and medical rationing into the debate.

I keep having flashbacks to the one time I accompanied Liz on her chemo day, at the Dana Farber Cancer Institute in Boston. One tiny positive through her whole ordeal was the fact that her insurance picked up the tab for all of her treatments. Avastin alone, she gasped, would cost over a hundred grand to someone who didn’t have insurance. Liz had Avastin, and a seemingly endless string of chemo drugs in addition to radiation, several surgeries, and many long hospital stays.

Liz was 33 and a half years old at the time of her diagnosis. She died two years later. How much did those two years cost her insurers? I don’t know. What would it cost not to pay for them?

Take a guess. It’s been nearly two years since she died and I can’t type this without feeling the too-familiar panicky clutch in my chest, the stinging tears welling up in my eyes. I would do anything, anything, to have her back again.

I think about her a lot. At times I smile when I think of the venom she would spew at those who believe that a single-payer system would limit access to the treatments that kept her alive–she knew that these treatments were out of most people’s reach already! Liz knew that our health care system was a moral disgrace. She had no doubt that thousands of other people with colon cancer would love to sit in her chemo chair at Dana Farber, but couldn’t. She knew those people would die more quickly, less hopefully, and certainly a hell of a lot poorer than she would.

Of course, she never planned on dying at all. I last spoke to her on October 29, 2007, when she called from her hospital bed to wish me a happy 36th birthday. She sounded frail, both physically and mentally. I was too afraid to ask about this strange thing called “end-of life care”, and she never mentioned it. All I could tell her was that I loved her, and that would have to be enough. She died two weeks later.

What DON’T we talk about when we talk about health care? Death. Money. Economic class. Equality, or the lack thereof. Fear. Mortality. Losing the illusion of control that we all hold so dear.

I can’t think about “health care reform” and not think about all the fucking cancer. I can’t hear “end of life” and think that death is going to happen to someone else. Death is coming, and death is real. Death is in the future for you, for me, for my children, for President Obama, for Rush Limbaugh, for everyone who panics at the idea of a single payer system. Death is a certainty. No one can escape it. The existence of death ought to humble us and make us more respectful of life. After all, if a dying woman can muster the strength to give a shit about the uninsured, why can’t everyone else?

3 Responses to “What we don’t talk about when we talk about health care”

  1. kario says:

    There are an awful lot of things we don't talk about when it comes to this debate. The debate has become something that feeds on itself and it has become about winning the argument versus doing what's right and best for everyone. Until we can realize that, I don't know how we can move forward. Until we can all agree that deep in our hearts what we really want is to have each and every person receive the care that they need, we won't ever figure out a way to make that happen. Until that becomes more important than winning the argument or worrying about the money, we're going nowhere.

  2. Jen says:

    Thank you Shannon.

  3. craftythrifter says:

    Just a note from an outsider to the debate. I'm in Canada and very often I see universal health care framed as socialized health care, by those who oppose as well as supporters. It seems like a term that blocks discussion.

    But universal health care doesn't have to means soicalized health care. We don't have socialized health care in Canada. We have a one-insurer system with the government as the insurer. The clinics and doctors I visit are private businesses that bill the government directly for their services.

    I guess the point is that the choice for Americans isn't private or socialized medicine, it's not two opposing ideas. It's a huge and diverse range of options with the US currently occupying one very extreme end. It's not a binary choice, it's a discussion waiting to happen.

    I hope you guys sort it out. UHC seems like a pretty basic right to me and you guys deserve it.

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