Health Series: The Lost Decades

Cross-posted at Tikkun Daily and DKos

I'll bet you think I'm going to write about the decades between when we first tried to pass health care reform and now.


Reflecting on the title, you're probably thinking back through history to Johnson, or Truman, or FDR, or Teddy Roosevelt. There are a lot of wasted years between then and now, I'll grant that. There have been many words said about health care, many promises made (to Carter, to Nixon...), many broken as easily as the brittle bones of an osteoporosis patient, and with just as much pain to the American people, who have lost more and more each decade to the monster that has occupied our health care system.


You may be thinking, too, of something like Japan's "Lost Decade" and thinking there's some sort of corollary there between title and subject.


You'd be mistaken. This is, indeed, a health care diary, but it's a little more personal than any of the above.


The lost decades are mine, and they are the future, not the past.


A bit about me for those who do not know me: I'm female; partnered; 49; outspokenly progressive; Berkeley radical removed from native soils but not from the west coast rainshed, now being a transplant myself, grafted into the rocky glacial tilth of the Pacific Northwest; resident outside a small town in a half-blue, half-red district (the most swing district in the state of Washington) and one of two vice-chairs of the local Democrats; organizer for single payer and for OFA, often combining the two into one activity; hopeful entrant into the local nursing program next fall and a current student of the prerequisites therefor; mom to three very wiggly dogs and three come-and-go cats; health care activist; hopeful future MD or other primary care provider; and last but not least, peritoneal dialysis patient since 2008.


And it is that last that brings forth many of my health care diaries, as I write from the perspective of what I know. I write from the place of where I am as well as the place where I once was.


And where I am right now is a place of being incredibly pissed off.


A friend of mine, Dori Schatell, a well-respected lay dialysis expert specializing in home dialysis (she runs homedialysis.org and kidneyschool.org), is writing a book. Someone on one of the dialysis boards recently queried about life expectancies and she said she had information; about five of us requested it. I am one.


As I said above, I am 49. My 50th birthday is in December, so we'll use both sets of applicable numbers, one for the age cohort I am currently in and the other for the age cohort I am soon to enter.


What I found out from Dori's life expectancy data is that for people my age,  45-49, the normal expectancy in years remaining is 33.5. That's for the U.S. population as a whole, including everyone: smokers, people who don't exercise, people who live at fastfooderies, people who take care of themselves and get enough sleep, everybody. 33.5 remaining years. It's shorter than the same age cohort might expect in some other countries, but only by a very few years, maybe as much as five or six at the outside.


For people aged 50 to 54, the expected number of remaining lifeyears drops from 33.5 to 29.2. You've aged four more years, so you have four fewer years remaining. It makes sense. It's still nearly three decades. That's quite a while, enough to raise a generation and see that generation have children. Enough to see your grandchildren or even great grandchildren, if you're fortunate enough to have children and if your children have children.


Three decades, or about a third more. Not an unrespectable sum.


If you're a dialysis patient of those ages, doing the type of dialysis I do? This is what pisses me off.
Age 45-49: 7.2 years.
Age 50-54: 6.3 years.
Less than ten expected remaining lifeyears in either case from the day the person starts dialysis.


In all, some two and a half decades have been stolen from me, stolen by the American health "care" system that puts profit before people and greedy CEOs with exploding wallets before anyone. The stockholders and funny-money handlers must make their fortunes, too, and we mustn't interrupt the flow of green to siphon from it just a little to provide actual, you know, care.


It didn't have to be this way. I could have gone in, seen a doctor, gotten the couple of prescription renewals that I needed and maybe some coaching on how to manage diabetes and hypertension on essentially no money, and been on my way...and right now, I'd be sitting on a bus headed home from a day at work or still at my desk getting something out before deadline, rather than at home at my computer reading about President Obama and the public option and last night's rude clown and the way he has stirred up a hornet's nest of dollars flying towards his opponent. Maybe I'd be trying to get out and pick the blackberries while I still can or take some, still sunwarmed, and make a batch of my splendid blackberry-chocolate jam, instead of sitting here trying to muster the energy to do anything after spending the day Tuesday with the Mad As Hell Doctors and their event. (I came home and literally collapsed after that. It takes a lot out of me, and takes me longer and longer to recover.)


It didn't have to be this way. I could have gotten what I needed easily by showing a card to someone who took my information, got me in to see a doctor, and then sent me on the way, scrips in hand. The big difference is that this would have required a caring system, and a caring society.


And I would have a working kidney right now.


And more importantly, I'd have three decades to look forward to, three decades in which to do all that I have vowed I will accomplish. Three decades. My beloved and I would be able, I hope, to grow old alongside each other, to watch winter creep across our brows and set in, Jack Frost nipping at your nose with white mustache hairs, my love, even more than he does now.


I want my years back.


I want my years back.  These are my lost decades, my future rolling across the horizon like tumbleweeds, each sagebush a year gone, a year turned to dust.


I want my years back.


And, too, there is this: of all the countries in the world with dialysis patients, the patients live the shortest lives...here. Right here at home.  The cost of our care is staggering: Medicare pays an average of $43,335 apiece for us, as opposed to $7,654 for seniors. Disabled people under 65 on Medicare use still less in terms of costs; they're responsible for an average of $6,298 apiece. We dialysis patients are a major cost driver for the program, running up a tab of over $15 billion dollars a year and increasing. And what do we get for it? Shorter lives.


Shorter lives, and hatred from many who see us as a threat to their own medical security or to their financial security. Even before all of this most recent health care debate started, in forums dating to 2006 and before, the hatred against dialysis patients is palpable. "You pay for it yourself out of pocket! It's not my responsibility to pay for your dialysis! If you can't afford it, well, you should have planned better. You should have set money aside, you should have taken better care of yourself, you should have, etc. and if you can't afford to take care of yourself and pay your own way, you should just go ahead and die." That's not a direct quote from one person but an amalgam of quotes from many, often repeated. The hatred towards transplant recipients (unless they're pretty young white women) makes the hatred towards dialysis patients a pale thing, a newt compared to the raging Salamander of hatred that erupts, especially from the right, because transplants cost money. Lots of money.


And always there is the attitude that it is not MY responsibility to pay for YOUR health, that what befalls you is solely your responsibility to handle. There is a lacking of any sense at all of community and of neighbor helping neighbor, of giveback. There is no potlatch of the heart, no commons, no sanctuary from the ills that beset us all. It has gone missing.


And with it have vanished my years, my future, the decades I should have with my beloved to adopt children of our own and raise them up to be admirable men and women in their own ways, the decades I should have to see my nieces not only grown but graduated and married and my sister made a grandmother, much to our mother's delight. The decades I should have had to write and to dare declaim in the public square and to pursue my own more quiet dreams as well as the more ambitious ones. The dreams that drift, feathered, swept whirling by the wind of a frozen Norther, ice forming upon the feathertips, weighted down and sunken, unseen and ruined, in the snows of my own deep winter.


For I feel greatly as though this is my winter. I have time, yes, but who knows how much, and who knows what quality the time remaining will retain. I near fifty, cronehood fast approaching, an honorable title among those of my tradition, but there should be decades left under Hecate's rule. Instead, I go from Demeter to Hecate but briefly and then to ... well, I know to what, having walked the path of the Mysteries, but it is not something, no matter how positive it is, to which I would hasten unnecessarily.


And thus I am angry beyond words at the system of profit-care that has set a few more dollars for someone or some corporation that didn't desperately need it above the needs of a human being, time and time and time again. It is not just me. It is so many others. The annals of misery contained in the health care stories on barackobama.com grow and grow with each day. Change cannot come soon enough.


But it cannot give me back my years.

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