Devin Grayson is a fiction writer who has been working in the comics industry for the past twenty years. She is best known for being the first woman to launch a monthly Batman series for DC Comics back in 2000 (read all of her published works here). In addition to original series and graphic novels, she’s scripted for well-known superhero characters ranging from Batman to the X-Men, and recently completed a full-length full-length Doctor Strange novel . An insulin-dependent Type 1 diabetic since the age of fourteen, Devin is also a passionate advocate and volunteer for Early Alert Canines (EAC).
Fatima: What is your “diabetes story”?
Devin: So, I have my diagnostic story, a cute little tale about how I discovered I was diabetic when I was fourteen, complete with orange juice and toilet paper jokes. But I think the real story is that my body broke down in a way that changed everything yet I thought I had to make it look like nothing had changed on the outside. My parents especially were so obviously worried…clearly, I had to reassure them, to pull through, to endure. Later, when I was old enough to know that my parents would have been okay with having me lean on them more, I’d internalized the societal expectations, which looked about the same. The diabetics you tend to see in magazines are the glowing, healthy ones. We smile for those pictures, we talk about how we rolled with it, how we can do anything. And that’s all true. But it’s also true that we sleep next to death, that our lives involve endless, constant calculations and that even when we do everything absolutely right, sometimes things go horribly wrong.
Fatima: What do you want share about your experience with diabetes?
Devin: The thing I most want people to understand about T1D is the extent to which it dominates the lives of those who live with it. It’s not a once-in-awhile flair up, it’s not a matter of a few lifestyle adjustments — we’re trying to mimic what would otherwise be an autonomic bodily function; calculations are flashing through our minds every minute of every day. Everything is a factor: not just carbs and insulin, but exercise and sleep and mood and even the damn weather.
The other thing I like to share with people is to find something physical that you love to do. Dancing, a sport, martial arts…anything that allows you to appreciate your body. Because most of the time, your relationship with your body as a T1D is going to be so adversarial, it can be so beneficial to be able to think beyond the abstract. You know, instead of “I have to take care of myself so I’m healthy, ” “the better I take care of myself, the longer/better/more I’ll be able to do X activity.” You need a place in your life where you experience your body as an instrument of possibility and pleasure rather than a deteriorating time bomb.
Fatima: This isn’t a clinical question, of course – one type 1 to another, I would not ask that. Having said that, how would describe your relationship with diabetes?
Devin: I’ll be honest, it’s not good. I’m a driven person and I get the things I’m responsible for done, but I have not fully worked through the resentment, if indeed that’s even possible. I was reading a book the other day about dieting and people’s complicated relationships with food—all the lessons we ingest from “clean your plate!” to “reward yourself with an indulgence.” It was well-written and thoughtful, but it was not diabetic-specific, and I kept thinking about the lessons we ingest; the constant contradiction between carbs-as-enemy and carbs-as-literal-life-saver. I don’t have a very healthy relationship with food and thinking about all that, I don’t see how I possibly could. There’s so much information, changing constantly as the medical community makes new discoveries, so I always feel behind, always a little inadequate, always a little frustrated with the gap between how hard I feel I’m working and the results I get. I can give you the nice speeches about how we learn from challenges and how adversity deepens compassion and how everyone has something they’re dealing with and this is just my thing–I even believe all of that—but I’m also exhausted and pissed off and anxious and frequently wondering what it would be like, how much more I could accomplish, if not for this particular albatross.
Fatima: Tell us more about about Cody, your Diabetic Alert Dog for many, many years.
Devin: This is the part of diabetes that I do love talking about; that even now, four months after his death due to old age, makes me smile…. Read more in Part I: How Cody, the Diabetic Alert Dog, Changed Devin Grayson’s Relationship with Type 1 Diabetes, where Devin shares more about Cody and the amazing work of Early Alert Canines (E.A.C.).
The Human Trial.
Fatima: After chatting with the team and learning about the film — what is The Human Trial story about, to you?
Devin: I see two stories in The Human Trial, and so, to me, maybe the real story is about the
intersection between them which is, of course, hope. One story is about the research team and the business end of it all and how incredibly expensive and complicated and difficult it is to do any kind of meaningful medical research, especially when human testing is involved. There’s a lot of risk in that story, and very high stakes, as well as a fascinating combination of human ambition and humility. Then there’s the story of the test subjects, the patients, who are putting their bodies on the line to try to help advance treatment for all T1Ds. This could change everything for them, for all of us, or it could all be for nothing. They’re incredibly brave and as we all know, bravery isn’t about the absence of fear, it’s about experiencing fear and moving through the challenge anyway. The Human Trial allows us to go along on that journey with them; to worry with them, to cheer them on, and then to share in either their disappointment or their triumph.
Fatima: Finally, what does hope mean to you — in general, and in the context of diabetes?
Devin: In general, I think of hope as fuel. Hope can keep us going when there’s nothing else, hope can give us the energy to try and make the world a better place, hope is the bright side of uncertainty. It’s a poetic word, often trotted out to make something seem more profound than it really is—it’s a chapter ender, you know? “But in the end, at least they had…hope.” In that sense, it’s a little facile at times (though certainly less problematic than its more sinister cousin, faith)—if you really need to be motivated, hope is not as strong, for example, as experience, knowledge or determination. And we have a tendency to use it backward. I’m sure you’ve heard someone say, “without hope we have nothing,” but…no. You can get on perfectly well without hope—see contentment or serenity or mindfulness or acceptance. When there’s nothing else, though, that’s when hope becomes powerful. And it’s a sweet thing, hope, almost always guileless (even when used unkindly). So hope is not something I’ve built my life around, but nor am I a stranger to its supportive influence.
I’ve lived with T1D for over thirty years now and have been failed by hope often. But without it—without hoping that I can make a positive impact on my health, or that taking as good care of myself as possible will allow me to be around long enough to see my eleven-year-old grow up—well, I guess I’d have nothing. So in light of diabetes, let’s just say hope and I are in a begrudging truce. Hope as a galvanizer, the way we see it in The Human Trial, is a hope most of us can sympathize with and all of us can cheer on. Hope doesn’t always pay off, but in the case of something like diabetes that you can’t just give up on, it’s a hell of a lot better than the alternative. I’ll root for hope over despair any day.