We Are Not All Heroes.
(Quick edit: I forgot to add the video!)
tl;dr: living with something does not a hero make.
I have so many things I want to write about, but I’m starting here because I haven’t finished a blog post in some time and I need to. Also, because I saw the video above and it moved me to think about something.
There is a tendency these days to describe anyone who faces conditions different from ours (i.e., that look more difficult) as “heroic.” And perhaps it is disingenuous of me to write this, because I’m not different from Julie. I have been diabetic for almost 44 years (I was diagnosed at 13). But I am different from Julie in that I am not “battling” diabetes. I am living with it.
It’s true that when I was diagnosed, back in 1971, the life expectancy of diabetics after diagnosis generally was given as about 25 years. I discovered this in 1976 when I read it in a brochure at a fund-raising concert for diabetes. But it’s also a hell of a lot longer than it used to be (before Canadian doctors Banting, Macleod, and Best isolated insulin in 1921). It’s true that my prospective father-in-law told my prospective (at the time) spouse that she would be a young widow because I was diabetic.
Let’s be clear about something. There are heroes in my story. My parents in particular, J and M, who recognized that my thirst and fogginess might indicate something. My pediatrician, Dr. L, who agreed with them and had me tested as soon my parents explained what was going on. Another doctor, Dr. DE, who was partially responsible for the creation of modern diabetes education, and in whose education center I spent a week when I was 13, learning what it meant to be diabetic.
When I was diagnosed, there were no continuous glucose monitors (“CGM”s). The scary-looking needle you see in the video is a disposable device that uses a needle to insert a fine sensor wire under the skin. You snap in a little transmitter (also shown) into that and it transmits a glucose reading every five minutes to a device that looks like a tiny iPod, on which you can read your approximate blood sugar. While not ultra-accurate, it does allow for trend analysis. You calibrate it by testing your blood glucose every 12 hours or so, and it’s worth testing blood glucose more often, since it’s often more accurate than the CGM.
When I was diagnosed there was no way to test for blood glucose outside of a lab. These days, you put a test strip into a shirt-pocket-sized (or smaller) device, poke yourself, and squeeze a tiny drop of blood onto the end of the strip. Five seconds later, you find out your current blood sugar.
I first saw crude blood testing strips in the early ‘90s. You put a big drop of blood onto these and waited 60 seconds (IIRC). Then you wiped off the blood with a cotton ball and waited another 30 second (again, IIRC) and compared the results to a color chart.
Before there was blood testing, there was urine testing. Because if you’re diabetic, your blood sugar is often so high that the kidneys can’t filter it, so it spills out in urine. In the ‘80s, when I had given up on testing for the most part, I used something called Diastix. Hold one of these in your urine stream, then time it for 30 seconds, and it gave you a read on how much sugar you were spilling. Ideally, the strip turned blue, indicating no spill (but then you had to watch for hypoglycemia, when your blood sugar drops too low) and if you weren’t lucky, the strip would go dark green or brown, indicating a lot of sugar in the urine.
Before that, there was TesTape, which came in a roll and which you could use the same way as Diastix for a quick sugar/no sugar in the urine test.
And before that, there was the little chemistry set that I carried around my junior high school. I can’t even find a photo of online. There was a gray plastic base and a gray plastic cover. In the base was a rack that held a glass test tube, a glass eyedropper, a glass bottle of reagent tablets (which may have been foil wrapped—I don’t recall clearly) and a color chart. The test worked this way: You put three drops of water into the test tube with the dropper, then stuck the dropper into the urine stream and added three drops of urine. Then, looking at your watch, you carefully unwrapped one of the reagent tablets and dropped it in. An extremely exothermic reaction followed—the tube got so hot it would burn you—and in sixty seconds you compared the color of the fluid in the tube to the chart to get a rough idea of how much you were spilling. Once again, if you were lucky, the color was blue.
You then washed out the tube, the dropper, dried everything, and put it away in the box. I used to do this all between classes.
Before these tests? Doctors—and, I imagine, caregivers generally—had to taste the urine of diabetic patients to tell whether there was sugar present. Wonderful.
And syringes. My great-grandmother (who I never met) was diabetic, and she had reusable glass syringes that had to be boiled, and the needles were reused as well, and were heavy, thick things.
Today almost all insulins are crystal clear products of recombinant DNA research. They are synthetic human insulins and are generally measured 100 “units” to the CC (hence, this is “U100” insulin.
When I was diagnosed, there was U40 (40 units to the CC) and U80 (twice as strong) and there were rumors of U500 for those who had built up resistance to the alien properties of insulin, which was then derived from the pancreas of cows and pigs slaughtered for food (there was a special beef-only insulin for observant Jews, but since pigs are more like people, pork-based insulin was generally held to be superior). Insulin came in two or three types (I’m sure there were more, some highly specialized, but these I remember). There was Regular, NPH, and Lente/Ultralente. Regular acted quickly, NPH was longer term, and Lente and Ultralente could last in the body for something like 24+ hours. The longer-term insulins were made from Regular by adding compounds to slow the absorption of the insulin. I remember swirling NPH insulin prior to taking a shot (with, thank god, disposable syringes, the needles of which seemed to get shorter and finer with each passing decade) to mix in the compound—you never shook it, because the compounds were fragile, and could be broken up by that shaking. Animal-derived insulin also lost potency if got warm (synthetic does also, but much more slowly and to a lesser extent) so you kept it in the fridge.
As testing techniques improved, I went from one U40 beef/pork injection each morning (a mix of Regular and NPH insulins) to two, switching to U100 when the standard changed, then three—with human synthetic Regular, and finally four, using a very short acting insulin called Humalog and a very long-acting insulin called Lantus. I went from testing my urine religiously in junior high to occasional tests with Diastix in high school to completely ignoring it in college and grad school. Only after my first child (who would in turn develop diabetes at 15) was born in 1989 did I begin blood testing occasionally, at my spouse’s behest. With human insulin and improved testing devices (not to mention improved insurance) I was eventually testing 10-12 times each day.
Six months ago, I started wearing a CGM, and back in November, I got an insulin pump. Julie’s wearing one of these in the video—you can see a white device on one of her upper arms. Mine’s a little different, but the idea is the same: You use a complicated little device to insert a soft plastic connector into your belly, then attach that to a cartridge of insulin that sits in a pump that pushes a little insulin our continuously (the “basal” dose). When you’re going to eat, or your tests tell you your blood sugar is too high, you can add a dose calculated on your current blood sugar or and/or what you’re eating to cover it. The pump is filled with Humalog, and a cartridge lasts two to four days.
There is hope that someday soon, pumps will be combined with CGMs to provide a true artificial pancreas—seamless blood glucose control. They’ve been promising me something like this since 1971, so I hope (for myself and my child) that it comes soon.
So I’ve faced incredible odds, right? I’ve been a hero, right? I’m an inspiration, right?
I’m just like you. Maybe your nose gets clogged. Maybe you have asthma. Maybe you wear glasses. Whatever it is, you live with it.
Julie isn’t fighting diabetes, and neither am I. We’re living with it.
We are not heroes.
So who is?
Well, frankly, it’s not the companies that produced the pumps and CGMs and blood glucose meters. They’re making plenty of money (insulin pumps retail for around $7,000, but insurance covers that. The parts to make one? Generously, $100. The rest is to cover research and development certification, I suppose. But do the math. Capitalism works.
No, the heroes? Banting, Macleod, Best. The people who conceived of the idea of urine and glucose tests. The ones who invented, designed, and built the first CGMs and pumps. These are the people who fight diabetes. And especially the ones looking for a biological and genetic cure. My parents, my pediatrician, Dr. L, and Dr. DE, who taught me how to live with diabetes. My spouse, who loves me and prods me from time to time to make doctor’s appointment.
These are the people who let me simply live each day, just like wearing glasses or using a cane or a handkerchief. It is because of these people that I say that I am diabetic, but not a diabetic. These are the heroes.
To these people, I want to say thank you, thank you, thank you! I can’t say it enough.
Because not all of us are heroes.
But some of us are.