January 10, 2006

I am going way off topic here

WARNING: This is a long post, and not entirely about running. I am also going to lose my cool. You have been warned.
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The New York Times has recently been running a series of articles on the diabetes epidemic. Most of these have been informative, objective, and highly interesting - and most conclude that our nation's workforce will soon be crippled by legions of workers "blind and halt." (Not that we aren't already crippled by legions of workers "stupid and lazy".)

Today's article, Living at an Epicenter of Diabetes, Defiance, and Despair, takes a close look at the overwhelming incidence of Type II diabetes in East Harlem. Many things in the article angered me, however, though a part of me is apalled that I would even have the gall to BE angry. Why? Because my anger is directed not at the author (mostly), but at the people in East Harlem; the victims themselves. Their attitude crazes me.

"Months spent [by the author, Kleinfeld] in the easy company of the shop's dozen or so regulars reveal something more than just the insidiousness of Type 2 diabetes, the disease's most common form. Those months, and conversations, disclose with relentless consistency the human behavior that makes dealing with Type 2 often feel so futile - the force of habit, the failure of will, the shrugging defeatism, the urge to salve a hard life by surrendering to small comforts: a piece of cake, a couple of beers, a day off from sticking oneself with needles." Force of habit? Failure of will? Shrugging defeatism?? Spare me the melodrama, Mr. Kleinfeld, I'm not hearing that.

And as for the East Harlem crowd: "the urge to salve a hard life by surrendering to small comforts..." -- give me a fucking BREAK! I'm not an unsympathetic man, I really do feel for all the people of the world who have daily (sometimes several times daily) and often painful maintenance routines they must go through for their health. But speaking as both a moderately dedicated athlete and a person with a chronic condition - no pain, no gain! You slack off, you die off. Period. We all know this to be true. The second we stop rolling that boulder up the hill, O My Sisyphean Siblings, the boulder comes down and crushes us.

In East Harlem, they are handed the knowledge and tools to combat diabetes on a silver platter, yet they won't participate. One woman whose weight was quoted in the article as over 200 pounds said, "The doctor said if I didn't diet, I'd have to take the insulin," she said. "I don't want the needle." Despite that dreaded prospect, she had difficulty satisfying the disease's persistent needs. Among widespread chronic conditions, diabetes is arguably the most arduous to control.

I have little sympathy for the crowd of diabetics who won't take care of themselves properly, and thus suffer the worst effects of the disease. Oh, you have to watch what you eat? I'm so sorry for you! Why don't you try my diet? My every-day-the-same diet, one in which if I eat just a few ounces of the wrong food I'm having stomach pain for the next two days? There were other quotes in the article about the typical diet in East Harlem; jokes about the see-food diet (if my daughter sees it, she eats it) and points made about the culturally-driven aspects: in that neighborhood, you eat hot dogs, you eat cake, you drink beer and real soda. None of this diet crap, "diet" is a four-letter word and to be "on a diet" is seen as a weakness. I purse my lips at that idea, trying to understand the power of it, while wondering why they as individuals can't take control over the culture?

One woman slacks on her regimen: She carried her glucose meter around, but didn't like to use it regularly, especially when she was with friends, a vanity of hers. "It's embarrassing to check your blood in front of people," she said. It irked her, this machine laying a claim on her.

Shiiiiiiiit. She doesn't want a machine laying claim on her? She should try dealing with two machines everyday, twice a day. You go anywhere, you have to take them with you, because the therapies must not stop. These diabetics are positively burdened by a glucose meter. This is the attitude I don't understand. Sure, I've been known to be less than compliant in my treatments, as have most Cystics; but by the time one's health is truly jeopardized, one gets hopping on the treatments! This does not appear to be the case, though, for the majority of the diabetes sufferers in East Harlem; their attitudes are cavalier and fatalistic. In short, their attitudes represent all that pisses me off about how some Cystics handle their disease. Remarkeably few, I grant, but still. I just don't get it!

The same woman remarks later in the article about the never-ending finger-sticks, monitoring, pills, etc. "You get used to it, but you know what?" she said. "You don't get used to it." Excuse me? You managed to avoid all this for the first twenty, thirty, forty years of life; you managed to shun reality even when the doctors said, "lose weight and stop eating that way, or you'll become diabetic," and NOW you want us to feel sorry for you?

Then things really got surreal. The article started breaking it down by economics (and implied race): Mr. Rivera said: "You know what I think? I think there's a cure. We're the poor, so they don't want to give it to us."

You've got to be fucking kidding me. Isn't that the first cry of the dissolute? The man is oppressing me! There must be a cure but it's not as profitable as allowing us to suffer and die! Sure. Let's just conveniently forget that the vast majority of the East Harlem diabetics don't have insurance and end up passing on health care costs as bad debt that hospitals must write off, thus driving up health care costs for everyone. Those who HAVE insurance, or can afford care without it, are apparently the rich (white) folk who live south of 96th street:

The art-shop gatherers sometimes talked about 96th Street, the tangible southern divide of a neighborhood and of a disease. Go north of 96th Street and you enter a constricted world laden with poverty. Go south and you find promise and riches, thin not fat, the difference between East Harlem and the Upper East Side, the difference between illness and health. The article quotes a diabetic rate south of 96th street of 1/10th that of East Harlem. Is the author really trying to pin this on economic differences, when he just finished concluding the problem was cultural?

Or is the real problem individual motivation? "Failure of the will" as the author put it? I believe this to be the biggest problem. As a cystic, I must summon the willpower to do treatments twice a day 'til the end of my life, and it's been that way ever since I can remember. The treatments will ultimately get longer and more numerous. The drugs get more heavy-duty and caustic. I'm not complaining, I'm just saying that this is what is; it's the background noise of my life. It's the hand I've been dealt and one thing I've learned is that I can't PLAY the hand I've been dealt if I'm always looking at (and coveting) the other players' hands!

As an "athlete" (I dare not fail to put quotes around that), I have learned the lessons of slacking; the sliding backwards, the loss of tone and performance and ability. It takes daily attention to continued training and dietary particulars. To make the time necessary for all this (exercising and the CF treatments), the rigorous control over my body extends to control over my time. Sure, I'm not as hard-core about that as Wil, but I do have to plan very carefully.

I don't know why I'm so frustrated. Can't I just let them go their own way, and I can go mine? No, it seems I can't. It is that attitude, that defeatism, that really gets my goat, partly because I can't change it, partly because I see the same attitude and excuses from some of my CF cohorts...and partly, I admit, because those horrible thoughts - that sheer laziness - lies just underneath the surface in me.

I skipped today's run. Turns out not only do I have a head cold that won't go away, I've also got a staph infection in my lungs. (The doc is going to let the cultures cook another day to see if the Pseudomonas shows up; it was expected, but hasn't turned up yet. Then he'll make a treatment decision. I may be going on Zyvox and I may be avoiding IVs!) Between the two, I'm exhausted. This morning, after again not sleeping well, I made the decision to forego what would have been a lovely sunny-morning run and instead get two more hours of sleep - which indeed seemed to help. I'll be in bed early tonight and have plans to make up the run tomorrow morning. But the illness is just an excuse - some part of me just wanted "a day off" from being an athlete.

Fuck, I don't know.

3 comments:

Lora said...

I fully hear ya. I work with people like this..I take care of them....I'm their nurse. It's hard to care for people that dont care to participate in their own healthcare, but I give it a try, then I leave them to live their lives their way. A physician once said to me, "You can choose to live, you can choose to die."
You have chosen to take the path that will give you a better quality of life, longer. Mr Bklyn---you are my hero!

About Me: said...

i too have always admired your training, what you do. still do.

but i wonder if you're lacking compassion perhaps. like, do you understand hopelessness? growing up feeling like you have no future? like little things are all you've ever had? been so poor you just don't really care, and you've scraggled for food and maybe a simple pleasure? maybe you have...
i don't understand why you feel so angry though. it's true they need to work themslevse better. but in the end they hurt themslves really. oh i know we taxpayers suffer now and again (but not as bad as we suffer for politicos spending habits) but day to day, they just hurt themselves. so why are you so mad at them for that?

Cris said...

I don't know why I get so angry. I guess it's because I am naturally bent to rage against the dying of the light and simply cannot understand those who won't. Can't is a different thing - Can't is something I can understand; there is simply no fight left to give. But what I was reading in the article was "won't".

there is good news, though; my continued attention to the diabetes epidemic has dovetailed with my involvement on a scenic design team bidding on the Exubera product rollout, wherein Pfizer will officially introduce the branding and the product to the sales force. It is an exciting new therapy - inhaled insulin - and one that is every bit as groundbreaking as injected insulin was 80 years ago. Perhaps now some of those hopeless cases I get angry at will be able to help themselves a little better.