Trek Tracks (Beats by Bev) The Bae From Sickbay

Audio: A recording of Leonard Nimoy reading it on Internet Archive.

Text: A PDF version.

if one/both of your new roommates is a child you assume responsibility of that child

For perspective, I’ve been diabetic for about 25% of this discovery’s history. When my grandparents were born, this treatment did not exist. If you ask me, “what time period would be fun to go back to?” I can’t even speculate more than one hundred years back, because I know I couldn’t live in that world.

Today, I’m going to pick up four boxes of insulin from my local drug store. My endocrinologist is renewing my prescription, so I’m set for several months to come. I lead a more difficult life than someone without Type 1 diabetes, but I do live, and so do my relatives and friends with the condition. Thank you, Banting, Best, Macleod, and Collip (and all those dogs), for letting me do that.

One hundred years later, after insulin’s discoverer gave his patent away for $1 so as never to profit from the discovery, pharmaceutical companies are forcing people to ration insulin or go without entirely due to unchecked price increases. This is particularly true in the US, and is a major reason why I did not stay there after graduate school. There, and in much of the world where insulin is expensive and scarce, people are dying. Things are starting to change, but not soon enough. It’s been one hundred years, and we need to do better when the alternative is death. 

Insulin is worth being grateful about, and its exploitation is worth being angry about. One thing to be aware of is that it is a treatment only, not a cure. Diabetes is still high-maintenance, and I still have a very complicated relationship to it.

Today, though, I’m choosing to focus on my gratitude, and being alive, and being able to go for a walk with my friend in the rain-scented air, do some trivia, see a show.

It wasn’t a perfect solution - Thompson actually had an allergic reaction to the first shot, probably due to an impurity - but, twelve days later, they had refined the dosage enough for a successful, magic-like change. I cannot emphasize how much Type 1 diabetes was a death sentence before this moment, and what an incredible gift, an incredible second chance, insulin was, despite its imperfections.

It’s important to note that Thompson successfully took insulin for 13 years, but still died at the age of 26. This was not directly because of diabetes. Insulin gave him the chance to live. Pneumonia killed him. Diabetic bodies are still more vulnerable to illness and anything else that compromises homeostasis.

It would have been my friend’s 40th birthday yesterday. He also had diabetes, and was in the hospital for related complications, but COVID (which he caught there) is what killed him.

My (out, proud, and brilliant) friend’s motto was from Tony Kushner’s masterwork Angels in America: “More Life.” It’s a play in large part about the AIDS epidemic, which was overlooked or even celebrated by many because the people who died from it were considered undesirable, expendable, broken. 

Insulin gives me more life. Its costs still shorten the lives others. We, along with other marginalized groups, are still in many respects considered expendable.

I’m still grateful for so many things, and I’m still angry about so many others.

Jon should have turned 41 yesterday.

This week, my diabetes tech failed me twice; first, my continuous glucose monitor went defective and rogue, giving completely incorrect readings which determined my basal insulin dose and thus made me ill, a roller coaster of highs and lows as insulin was cut off and delivered at random, until I stopped the sensor. Why didn’t I cut it off immediately? Because a ten-day sensor costs at least $100, and once you shut it down, it’s done. I was hoping it would fix itself, as sometimes happens.

On Monday, my pump site failed just before I started teaching. I was so busy for the three hours that I didn’t notice, until the alarm sounded that I was out of insulin. My pump had delivered everything it had left, none of which wound up in my body, in a desperate attempt to lower my blood sugar. After only three hours without insulin, my blood sugar, which had been resting comfortably between the “diabetic normal” of 4-8, had risen to 20. All I had consumed that day was water. I was sick for the rest of the day.

For a Type 1 diabetic, and for many Type 2s, a lack of insulin is a death sentence. At the same time, in our current reality, each new advancement, each little bit of magic, comes at a cost.

Despite its imperfections, it’s still an incredible gift.

I started the Dexcom G7 continuous glucose monitor two weeks ago, after being on the G6 for a few years. Startlingly, my blood sugar has been in range more than 90% of the time for an entire week. Talk about magic.

If the system can be trusted, that is–another company’s CGM has recently been implicated in at least 7 deaths (none in North America, though, chirp the articles–only 57 injuries in the US). When you pair the monitor with an insulin pump, letting it control your baseline insulin delivery, it is an incredible act of trust that you can’t think about too much lest you turn into an anxious mess. Check your sources with another meter if things seem too uncharacteristic. But a rogue sensor can kill in the night.

Gratitude, though. A few nights ago, I came home incredibly tired. I made myself a sandwich, took insulin before eating the sandwich (because you’re supposed to do so at least 15 minutes before you eat for optimum insulin efficiency–yet another consideration), then fell asleep before eating the sandwich. A potentially fatal error that I haven’t made in years and years. When my blood sugar crashes, I almost always wake up. Not this time. The Dexcom worked its magic, stopped my basal insulin, dragged me up from the depths. No medical attention required. Gratitude [it looked like magic].

On the other side of 40, I’ve noticed the first wisps of what might be aging, what might be diabetes complications. Anger: this disease has stolen so much. Gratitude: I’m still here to feel these things.

Getting on the new CGM was an insurance nightmare. Dexcom stopped its delivery service and discount program, cutting us off in its rush to get us all on the most updated version. It is a business, after all! Prescriptions wouldn’t transfer. Discount codes expired. Three different insurance programs had to be notified, begged, at the most hectic time of year. There was a gap and I had to buy emergency supplies out of pocket (hundreds of dollars that I can thankfully currently afford).

I apologized to the trainee pharmacy student behind the counter for all the stress. “No, no,” he said. “This is good, I’m learning a lot.”

Leonard Thompson would have died a skeleton in 1922 at 14 years of age. I just had to call my insurance company a few times. It’s not the same, yet the underlying fear is.

The advances are great; so are the costs. Advances don’t mean anything if they don’t come with access.

About five weeks ago, I started on a concentrated version of insulin that's essentially "double strength," so that I could take fewer units of that miracle hormone and therefore put less daily stress on the cannula insert area. I had a great care team lead for once who has really tried to work with my "no trends" numbers, so I was feeling excited.

A week and a half before the switch, I found out he'd gotten a job elsewhere and left without a trace, and now my big switch was to be handled by people I had never met, one of whom had never presided over that specific medication change. It was, to say the least, disheartening. Worse, they had to push my appointment back.

Since I had already ordered the new insulin, my insurance wouldn't let me order the old kind--and I was going to run out, now, a day before the switch, and I wasn't allowed to switch by myself. Thankfully, you can order insulin over the counter and it was only $45 for a vial (most of which will go to waste, now), but what if I didn't have it? Rationing or skipping insulin kills.

When I got to the hospital for the appointment, I had to explain to one of the nurses in charge of my health, a woman in her 60s, the basic functions of how my insulin pump worked. While I love teaching hospitals and I am an educator by profession, it did not inspire confidence. But the switch was made, and the dosages cut accordingly. Everything was done clearly, and correctly.

And at 2am, with my beautiful new supercharged insulin, I almost died anyway. It worked too well.

A non-diabetic in Canada should have a blood glucose level of 4-7 mmol/l, depending on time of day and what you've eaten. For diabetics, the ideal is 4-8 with up to 10 after meals (that is *ideal.* Reality is regularly extremely different). Anything lower than 4--even 3.9--is cause for concern. Anything lower than 3 is a bright red warning sign. It can lead to seizures or unconsciousness. You can not wake up. The lowest I've ever been is 1.7, but that was mercifully brief. (Most meters don't even read that low.) When your blood sugar is below 3, it's literally like you can feel your life force draining away, while professional soccer players kick the shit out of your muscles. Even when you come back up, the effects can last for a day.

I was between 2.1-2.3 for more than two hours. I could not bring myself up, no matter what I ate or drank. I have been diabetic for almost 30 years and I have never gone to the hospital. I did not want to wake anyone up. Ten more minutes and I would have had to.

In the weeks since, I've managed to get things much more balanced. I feel the switch was, on balance, a great choice. I'm no longer burning through expensive supplies at a furious pace.

It's a constant reminder that insulin is a 105-year-old treatment, not a cure, and that too much can quickly become even worse than too little. (Remember: there are at least 42 factors that influence blood sugar, so it's not as simple as carbs to insulin.) The whole thing has me thinking about the precariousness of care, and the notion that we can be one postponed appointment or one miscalculated dose away from disaster.

It makes me want to fight more for access for everyone, and to feel grateful for what I do have.