My portable insulin pump never strays from my side, but I feel more human with the technology than without it.
I have been assimilated.
I am hooked up to a microelectronic device 24 hours a day and I love it. I hope to remain hooked up to this device, or a more advanced version of it, for the rest of my life.
Unless a cure is found for diabetes, that is.
The device I’m attached to is called an insulin infusion pump, and chances are you have no use for it yourself. It’s about the size of a beeper and if you saw it you’d probably think that’s what it was — until you noticed the tubing that connects it to a cannula (a flexible plastic tube) inserted into my abdomen.
Now you’re thinking, “Cool!” unless you’re thinking, “Ewww!” Or maybe you’re thinking both at once. Frankly, I relish these reactions. If you’re into nifty gadgets, no matter what they’re used for, then you probably won’t mind if I proudly demo my new insulin pump to you. If you’re grossed out, then I get to feel smug about my blasé attitude toward needles and cannulae and the permeability of my body.
Not everybody carries around a major organ in a pocket, after all.
Basically, an insulin infusion pump consists of a little computer, a tiny motor and a cartridge or reservoir of insulin. It has buttons and a display screen, like any computer, and is, as I said, about the size of a beeper. Generally, it’s attached to the wearer’s abdomen, thigh or buttock with about 40 inches of plastic tubing. It must be worn constantly.
The computer can be programmed to dispense insulin in different amounts at various times of the day and can be easily adjusted to accommodate what the user is doing at a given time. It can also deliver a special dose of insulin to cover a meal. All of this allows, at least potentially, more flexibility and better control of blood sugar than is usually possible with insulin injections. And control of blood sugar is what diabetes management is all about.
Insulin pumps are not new; they’ve been around for nearly 20 years. But the early models were much larger and had far fewer features than the ones now available. Once seen as a last resort for diabetics for whom no other methods of control worked, in the past few years insulin pumps have started to enter the mainstream of therapy for diabetes. There are now about 1 million of the pumps worldwide, and the youngest pumper is less than a year old.
The insulin infusion pump is not a cure for diabetes. A pump doesn’t adjust automatically; the wearer has to program it and make adjustments based on frequent blood sugar monitoring, intimate and detailed self-knowledge and a sophisticated understanding of the interplay of diet, exercise and insulin. Using a pump isn’t really less work than doing insulin injections; it’s just that the hard work can be separated more easily from everyday life and is more likely to pay off in good control.
Over the past couple of years, I have seen some handwringing in various publications about the merging of computers and human bodies. Most of this concern centers on what might be called recreational biotechnology: people choosing to have computer chips implanted for cosmetic or other relatively frivolous reasons, or using tracking devices with Big Brother-ish implications. These articles often mention the potential of implantable medical technology for treating diabetes and other chronic conditions, but discussion of medical applications is dismissed pretty quickly — with the implication that being kept alive by a machine is, like, really creepy.
Clearly, the people who write these articles don’t suffer from a major chronic illness. Let me put it bluntly: Being kept alive by a machine — especially one that doesn’t hinder mobility — beats being dead.
Diabetes is a cruel disease. It’s cruel in all its forms. I have Type 1 diabetes — often called “juvenile onset,” though I got it at age 33 — and that means that I must take insulin to survive. (Until the discovery of insulin in 1922, Type 1 diabetes was a death sentence.) Insulin must be taken by injection or infusion. Pills don’t work because stomach acids destroy the protein before it can reach the bloodstream, and research on ways to deliver insulin with patches or inhalers hasn’t yet panned out.
Many people, diabetic and nondiabetic, think the shots are the worst part about having diabetes, but that was never true for me. My main problem with injections was other people’s reactions to them, reactions that made lunch meetings and eating out in restaurants a hassle. I did sometimes start to feel like a pincushion, but, luckily, I never found that insulin shots hurt much and I’ve never been afraid of needles. I remember having to psych myself up to give myself a shot the first time, but I lost my fear almost immediately.
Not all diabetics have this experience. Some people never get used to it — four shots a day, every day, and they hate it every single time. The pump doesn’t completely do away with the needles, because the infusion site has to be changed every three days. But still, it’s one needle every three days, instead of three or four a day.
For me, the worst things about having diabetes are the regimentation, the feelings of guilt and frustration, the frequent failures no matter how hard I try to stay in control (and no matter how hard I try not to define out-of-range blood sugar as “failure”). Also, I hate the knowledge that even if I do everything “right,” I may still end up with hideous complications in 10 or 20 or 30 years. Diabetes makes most of life’s basic activities (eating, exercising, sleeping, sex) more difficult, or at least more complicated. Going on a picnic, traveling across time zones, driving a car — I can’t take my ability to do any of these things for granted. A dozen or more times a day, I have to ask myself, “Can I do this? Is my blood sugar too low? Too high? Would it be better if I waited? Should I just forget it?” These questions are part of a silent monologue, the diabetic patter of numbers and doses and conversions of food, insulin, exercise, blood sugar.
About a year after I was diagnosed with diabetes, I went to a potluck dinner and carefully assembled a plate of food. I commented to a friend that I hoped someday I’d get to the point that I’d be able to look at a plate of food and see just food — not a collection of carbohydrates and other nutrients that would have to be balanced with insulin. A woman whose mother had been diabetic since childhood heard me and said, seriously, “You never will.” At the time I thought she was being cruel; now I know that she was just being realistic.
I recognized long ago that I am alive today because of 20th century medical technology. Much as I might like to live a pure, natural existence, unencumbered by the stresses of the modern world, I can’t. In fact, most of us can’t. We don’t have the knowledge or skills or personal habits to cope without our technological cushions.
Like a lot of people, I find many of the uses to which new technologies are being put disturbing. I think classrooms should have more books and fewer computers. I think the Web is a mixed blessing. I think cellphones are a menace, even though I own one.
I believe in “appropriate” technology and, as far as I’m concerned, insulin pumps qualify. My pump doesn’t alienate me from my body or from other people. It makes it possible for me to live more in tune with my surroundings and less according to the clock. It lets me adjust the insulin to my body’s rhythms, instead of the other way around. It allows me to sleep late.
The only ethical problem with insulin pumps is that not everyone who needs one can afford one. They’re expensive, and many health insurance plans don’t cover them.
In her popular memoir “Under the Tuscan Sun,” Frances Mayes wrote of the “relaxation and freedom” of long, leisurely meals at a table outside under the trees. My reaction when I read this a few years ago was anger. Not anger at Mayes (well, maybe a little resentment), but anger at my own situation, at the knowledge that eating, for me, would never again be an experience of freedom, relaxation, ease. Enjoyment, yes, but a formal enjoyment. A highly structured ritual enjoyment.
The insulin pump hasn’t given me a place at that table under the trees. For one thing, I doubt that the beeping noises and uncouth technology would be welcome — they might spoil the romantic illusion of a bucolic life. But it gives me back a little of that feeling of ease and relaxation. Being a cyborg is making me more human.
Janet Lafler is a medical writer. More Janet Lafler.
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