(cw: talk about death [specifically mine, theoretically])
As of today I have (officially) stayed alive with Type 1 diabetes for ten years1. I’ve done a little bit of reading on the history of Type 1 treatment, one of the first acute conditions turned chronic through medical intervention (thank you, Drs. Banting, Macleod, and Best). The longer I live, the more “I would have died by now” milestones I pass, and the more I am reminded of how grateful I am for advances in diabetes treatment. I have passed the “I would have lived this long on a starvation diet” milestone. In a few years, I’ll probably make it past the “lethal atherosclerosis” line, then the “renal failure” line, assuming I retain access to current diabetes and other medical technology2. I’ll probably also mostly avoid the non-lethal sequelae, the blindness and the amputations and the peripheral neuropathies. Apparently in a few years I’ll need to start taking statins even if my cholesterol is good, because diabetes often brings vascular complications. As good as diabetes technology is, I am, fundamentally, manually running one of the primary metabolic loops in the human body. It’s decidedly imperfect even when running at top performance.
I don’t recommend having “I could have died” experiences for anyone, but it does mean that I am aware of and grateful for being alive and (approximately) healthy basically every single day. It also means I’m aware of exactly how conditional “health” is. I don’t have a family history of Type 1—I’m the first one we know of as far back as family memory goes—which means my diagnosis was something I couldn’t even have mentally prepared for. Intellectually I knew that disability is something that could come into my life at any time for any reason, but now I know it viscerally.
My wife wrote a really good post about COVID denialism and the belief that disability is something that happens to Other People. I have lived for the past 4.5 years of this pandemic knowing not only that I am more vulnerable to negative consequences of COVID due to diabetes, but that I could easily get even more disabilities as a result of infection. I was already disabled, but I am multiply disabled now by society’s failure to grapple with the reality of this disease. If I could have one wish from getting diabetes, it would be for everyone around me to recognize that their health is also conditional and to behave accordingly.
I know this post feels like kind of a bummer, but I am genuinely grateful to be alive and experiencing the world and everything it has to offer, even the bad stuff3. It is a gift to be here and talking to all of you. After all, there’s new frogs and sea slugs and cool music to listen to.
Liz’s Delicious Sludge Cocktail
- 1.5 oz Duncan Taylor blended Scotch
- 0.5 oz creme de cacao
- 1 barspoon amaretto
- 4 dashes absinthe bitters
- splash of oat milk
- 1 cup black sesame ice cream
I try to have at least one treat I “shouldn’t” have on each diagnosis anniversary as a celebration of the fact that I can. This year I asked my wife for a black sesame ice cream cocktail, which I knew full well would look like a glass full of concrete. But hey, it’s delicious concrete.
- I was definitely diagnosable at least two months earlier, but I was determined that my life wasn’t going to be permanently upended by getting Type 1 when I turned 25. Turns out it doesn’t really work like that, but I gave it a good try. ↩︎
- Highly recommend the book Bittersweet: Diabetes, Insulin, and the Transformation of Illness by Chris Feudtner (link). I am still reading it something like 7 years after purchase because it turns out it’s stressful to read a book all about how I probably would have died at various points through the 20th Century. ↩︎
- boy oh boy is there plenty to choose from ↩︎
It’s really tough for me to read this post which is, to a
substantial degree, about the hypothetical of my wife dying. But I
think it’s worth sharing both as a celebration of the fact that she
is very much alive and as a meditation on what life is like with
only the ongoing application of modern medical treatment between
oneself and the void.
Also, I gotta say, I am pretty proud of that beverage. The
flavors meld really well—I wanted to make sure the black sesame was
still very much the primary note, which it absolutely is, while
giving it a bit of richness with the scotch and cacao as well as a
touch of liveliness with the amaretto and absinthe. I might actually
seek out more black sesame ice cream to be able to make this for
friends.
Congratulations on 10 years! I, too, find it… Concerning… to realize I wouldn’t be alive for the last 3 decades without medical intervention (my stomach doesn’t work right).
My family has a lot of diabetes in it. I will probably get diabetes at some point; knowing it’s coming and helping my family deal with it makes it less scary for me, which I am realizing now is a silver lining.
Yeah, it’s very weird to think about how it might have been more helpful to have advance notice (or might not! the concern is real). I also think less mystification of (any kind of) diabetes would have been very helpful. The cultural wisdom of “your life as you know it is over” isn’t wrong per se, but there’s far more continuity than even the medical professionals helping me through early diagnosis told me. I don’t eat as much pasta as I did pre-diagnosis, but the impression I was given was that I should consider never eating pasta (or cake, or rice, or) ever again For My Health… and let me tell you, pasta and cake are very important to my mental health.
Like I said, I don’t wish the knowledge that either “I could be dead” (from an accident) or “I will die (much earlier) without my medication” on anyone, but it’s also an absolute gift. I don’t live my life like it could be the last days because 1) that’s exhausting and 2) you never know regardless, but it definitely makes me grateful for what I have.
Congrats on making it this far. I was diagnosed as type 2 recently. I’m also coming to grips with a frankly alarming amount of mental illness present on both sides of my family tree. It explains a lot. Without modern psychiatric medicine, I would likely be institutionalized, dead, or nonfunctional at this point. So as frustrating as my struggles have been, things could be much worse.
Thank you! It can be a hard road to follow (neither diabetes nor mental illness are, mmm, well understood by society let’s say) but it’s one that can be done all the same. Diabetes diagnosis and mental health struggles both take a lot of getting used to but, at least for me, I found that the diabetes was able to fade into the background somewhat. Like, I think about it multiple times a day every day (because that’s how to stay alive) but it has become normal. I don’t have to think quite as much about how to eat food, because I’ve adjusted to my new dietary patterns and everything isn’t weird and hard all the time. Sending you much love and support as you navigate how you’re going to live with diabetes!
I keep bringing up “Webmentions” in the context of discussing the sociable web and advocating for more people to adopt more social technologies on their…