My Health Care Story. - Democratic Underground

Plaid Adder

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Fri Sep-18-09 03:20 PM
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My Health Care Story.

I've now been inactive here for so long that most of you have probably forgotten who I am. The birth of our daughter back in the summer of 2007 led to a drastic decline in the amount of free time I had to piss away on the internet, and then I sort of went on sabbatical from politics after Obama's inauguration. I'm still not sure why. I just lost my desire to put the time and effort into my political writing. Who knows, maybe I just needed a rest.

But, like just about everyone else in the USA, I have a health care story. It's not one that I have had a particularly burning desire to tell. It's unlike most other health care stories in that it doesn't have a lot to do with the insurance industry per se. But I do think it might offer some insight into why it's health care, in particular, that seems to have popped the top off this country's can of carbonated craziness.

This past spring, as our daughter PJ approached her second birthday, my partner and I started talking about having a second child. It had always been our plan for me to carry #2. We knew this would involve fertility treatments because since the age of 18 I had had a condition called polycystic ovarian syndrome, one of the symptoms of which is that you don't ovulate regularly. So I went to the doctor, and he sent me off to do a series of tests. Based on the results of the first test I was scheduled for an endometrial biopsy. My ob-gyn assured me at the time that it was probably just hyperplasia (overgrowth of the uterine lining, something I already knew I had) and not cancer, because after all I was only 40 and endometrial cancer is a disease of older women.

A few days later my ob-gyn called with the results of the biopsy. And that was the end of my life before cancer.

A few weeks later I was unconscious in the OR while a five-armed robot removed my uterus, cervix, and ovaries. For a month after that I was not able to do much apart from lie there and try to heal. I had been directed not to lift anything heavier than 5 pounds for 4 weeks, which of course would rule out lifting my 25-pound toddler. That was very difficult for both of us, but we got a calendar and we marked off every day until we got to the first post-operation checkup. The doctor said I had healed well, and that I could pick her up now, and that in a couple weeks I could resume all my normal activities.

Throughout the whole process, my doctor was very pleased with how everything went. My ectomied organs indicated that the cancer had not progressed beyond the lining of the uterus, and that it was almost certainly entirely removed by the operation. The operation itself apparently went perfectly. I healed up with no complications. All of this, of course, was an immeasurable relief to both of us. We got a lot of support from family and friends and from our church. All of this makes me very lucky. That, and the fact that I have health insurance.

My insurance paid for about 95% of all this. I am still, however, out several thousand dollars, what with deductibles and copays and medication and whatnot. This is worth pointing out. Your insurance, typically, will pay *most* of your medical bills. It does not pay all of them. If I had been living closer to the brink of ruin, as many people are these days, this crisis would have created some serious financial problems for me on top of the existential ones.

What existential ones, you say. Well, here's the main one: I've finally realized that I'm going to die.

I'm most likely not going to die of endometrial cancer. Endometrial cancer has a very good survival rate and mine was caught early. But going through what I went through around this brought me face to face with mortality in a way that nothing else ever had. Intellectually, of course, I always knew that humans are mortal and that I will not live forever. But I didn't understand it emotionally and psychologically until now. And I have to say, I'm finding it surprisingly difficult to integrate this knowledge into my regular life. Being aware, as I am now, that my life is of unknown but definitely finite duration, ought to make me more dedicated to making every moment of it count. And yet, I still have to go to work, I still have to cook and take care of PJ and pay bills, I still have to do all that stuff we do because we are thinking of the future and which little by little steals the present moment away from us. I mean look at me now, sitting here typing up this thing.

What's even worse: everyone I love or care about is going to die too.

It seems like since I got my diagnosis, the whole world is coming down with cancer. An old friend of mine has had a breast cancer recurrence after 8 years. An old friend's father has suddenly been diagnosed with Stage 4 melanoma. An old friend of my mother's is dying of lymphoma. And on and on. Some of them will recover and some of them won't. But we'll all be living the rest of our lives in Cancerland, where the illness we're surviving--for the time being--hisses through our brains in all its metaphorical malice, reminding us that no matter where we are or what we're doing or how we feel, deep within our bodies, death can always break out. And one day, it will.

Anyway, going through this mess while the health care debate is going on has suggested to me something that I don't think I've seen anyone talk about yet: that as much as we all talk about money, at the bottom of it all, a lot of the craziness around health care reform has to do with Americans' collective and, I think, peculiarly intense fear of death.

The panic about "death boards" is perhaps the most concrete example of this. But I think that underneath a lot of the resistance to "rationing" (yes, I know, private health care is rationed too, you don't have to convince me, moving on now) health care is driven by panic about the end of life. I think that one of the elements of our culture's dominant capitalist belief system is the deluded assumption that if you spend enough money, you need never die. As long as you can afford the best health care money can buy, then your body can be kept alive indefinitely. Spare no expense, and you can always extend your time one more week, one more day.

Of course many people realize they don't have that kind of money, right now. But that doesn't matter. Politics are what they are in this country because so many of those without money identify so strongly with those who have money. They believe that one day, they too will become rich. And even if they donn't, surely when it came to a crisis like this, the money would somehow be found to pay for that expensive life-saving treatment. The only thing to fear would be a system in which that magical treatment was not available to them because the evil government was trying to enforce its socialist pseudo-equality by preventing people from paying for special expensive live-saving treatments not covered by the government's diabolical insurance plan.

It sounds crazy, perhaps. But I think there are a lot of Americans out there convinced that right now they can buy eternal life, and that if health care becomes a public rather than a private enterprise, then eternal life won't be for sale any more. Because we all know that in a government-run economy, all the *good* stuff gets forced into the black market.

It's not an idea that can have any political utility; and maybe that's one reason I haven't been wanting to write about politics these days. It's a purely philosohpical argument: that our culture would be wiser, and our politics healthier, if we all truly understood what it means to be mortal. But that's what I've been thinking about, while I sit here not posting.

I'll tell you what I do know, coming out of this, which I think does have a political application.

Some cancers have good survival rates and some are pretty much going to kill you. But for cancers that start out in organs that aren't considered vital--the uterus, the cervix, the breasts, the ovaries, the skin--it's always better for the patient (and, for those who care, cheaper for the system) if you detect it early, before it spreads and when it's still operable. The only way you are going to detect these cancers early is by getting regular checkups with your doctors and going through regular screenings for cancers that you're at risk for. And if you cannot afford routine medical care, as most people who are uninsured or underinsured can't, and you develop cancer, it's a good bet you will not find it until it's no longer curable. And that's before we get into the question of how, if you're uninsured or underinsured, you pay for cancer treatment even if you *do* find it in time.

I'm alive now, and almost certainly cancer-free, because I have health insurance. If I had been unemployed last year, I would never have found this in time and it might well have killed me. And that's just fucking wrong. Why should I live, and someone else with the same cancer die, just because I have a job with benefits and she doesn't?

I hear a lot of talk about single payer this and public option that and Republican support my ass and so on and so forth. I have not yet had the patience or fortitude to dedicate myself to following the conversation closely enough to enter it. All I can say is what I know: We cannot defeat death, but it's not impossible that someday we may eventually defeat injustice. Universal health care would be a big step. And as far as I'm concerned, if the business of health care remains in the hands of private insurance companies and for-profit hospitals, then whatever changes are made, that will not be "health care reform." That will come under the heading of "yet more of this bullshit."

It's my hope, anyway, that Obama's team recognizes this and that they will pull through in the end. Meanwhile, I have to figure out how to make the rest of my finite life meaningful, and that's a job in itself. But I'm still here, and I'm not dead yet, and I hope the rest of you are well.

C ya,

The Plaid Adder