Chuck Eichten is design director for Nike Inc., and he’s also had Type 1 diabetes for over 30 years. And there were several years of his life where he maintained an A1c of 4.5%. That’s normal for someone WITHOUT diabetes. “That’s awesome” you might be quick to say. Except it wasn’t. At his most strict control, Chuck was working out twice a day, sometimes logging 100 miles on his bike in 24 hours. In his words he noted “For almost 25 years, I thought I had mastered tight control of my Type 1 diabetes: I was in great physical condition. Ideal weight. Zero retinopathy. No kidney issues. No side effects.” Pretty amazing, except for one thing: Chucks had a lot of lows. And then started having hypo-induced seizures. When he had his fifth seizure just after his son turned one year old, he realized that “his perfect was not.” Yes, he had incredible numbers. But it was at the cost of running dangerously low, and now he had a young child to worry about. He finally realized that “being dead was not a good trade-off for too tight control.” So Chuck changed his life, changed his diabetes management, and wrote about everything he’s learned in an amazing new book: The Book of Better. As soon as I cracked open this colorful, graphics-and-chart-filled book, I started laughing – and I also started learning. Chuck breaks down diabetes management into one simple goal: make it BETTER. And he does it while being hilarious and informative at the same time. I mean, have you ever thought that picking your endocrinologist is just like dating and you might have to go through a few to find “the one”? Me neither.
Chuck was kind enough to do an interview with me about his book, and I encourage you to get yourself a copy. Whether you’ve had diabetes for 1 day or like me, almost two decades, whether you have complications or are as healthy as non-diabetic horse, you will learn from this book. And you will laugh your ass off. Get it here, and please check out the interview below. I’ve also popped in some of the graphics he uses throughout the book, included his rendition of what diabetes looks like (a little monster!) Many thanks to Chuck for his awesome book and for agreeing to this interview!
Q) The Book of Better is unlike any diabetes book out there – for one thing, it’s funny as all get out, and for another, it’s colorful with lots of graphics, charts, and that almost-cute diabetes monster character running throughout the pages. What made you want to write a book about diabetes that’s so unique?
I’m one of those ‘visual’ people. I’m always interested in how things look, how they are put together, why they look the way they do. Cars, books, clothes, spoons, chairs, whatever. I guess that’s why I’m a designer. Designers always think they can improve things—make something more functional, more fun, more interesting, more BETTER. Sometimes it turns out that we should probably have left well enough alone, but other times an insightful designer can have a big positive impact. So I’m always looking at things, imagining how I would make them different, and hopefully better. At some point I tried to re-imagine how we look at, talk about, and maybe even manage our diabetes, and that led me to start working on The Book.
Oh, and thanks for saying it is funny.
Of course, right now, as we speak, there is a designer looking at The Book of Better, thinking, “This is CRAP! I could easily do something MUCH better than this.”
Q) At the beginning of your book, you describe the almost obsessive care you took of your diabetes in order to maintain an A1c of 4.5%. Because you were running so consistently low, you also experienced dangerous seizures, and you realized that “being dead was not a good trade-off for too tight control.” But, you lived this tightly controlled for 20 years – what exactly was it that made you decide you had to change. And what steps did you begin to take to make a change?
What I’ve learned is that our diabetes evolves over time—symptoms and treatment and reactions. For me in particular, my reaction to low blood sugars changed dramatically. So although I had been managing my blood sugars at very low levels for some time, it wasn’t until I starting having severe reactions that I got the message. Sad that it took a half a dozen seizures to get my attention. But it was finally enough to force me to do something different—to find something better, I guess.
The first step was to find a really good doctor who really understood diabetes at least as well as I did. Doctor’s aren’t all the same you know. It’s like dating, I think—you have to go out with a few before you find the right one. But it is hard because, as the person dealing with this thing every damn minute of every day, I thought I knew everything. Turns out I didn’t. Still don’t. Finding a good doctor was a spectacular improvement. That led me to finally try the insulin pump. Which was huge.
Q) You outright say in this book that you believe using an insulin pump is the best way to manage diabetes. What do you say to the person with excellent control on shots though, who is really happy with their regimen? Do you believe that with diabetes “if it ain’t broke, don’t fix it?” in terms of a management regimen? Or is it your belief that everyone should be on a pump?
Yeah, I guess I’m a bit of a zealot about the pump. Here’s the deal. I’m saying there is nothing widely available that comes close to allowing us to control our insulin like the pump. So it’s the best. Is it a pain in the ass? Yes. Is it uncomfortable? Yes? Is it unsightly? Yes. Do I wish I didn’t have to wear one? Yes. Do I take issue with someone who chooses to treat their diabetes otherwise? No. I absolutely believe you should do what works for you. But everyone should be aware of what the pump offers. No one should make a decision to use a pump or not use a pump without understanding the benefits. No one should experience roadblocks to making an informed decision.
I love analogies, so here’s my analogy: The best way for me to get to New York City from Portland Oregon is by plane. It is not the only way, or even the most enjoyable, but few would argue that, all things considered, a plane is the most efficient and cost-effective and even the safest way to get there. It may not be the best way for everyone. But I think you would be sad if you rode a horse from San Francisco to New Jersey, missed your meeting, and then later found out that you could have taken a plane.
I am fortunate to have been very healthy with diabetes. For over 20 years, on multiple, and even ONE daily injection, I worked to stay fit, kept my A1c low and never had even minor issues with my eyes, my kidneys, or my nerves. Everything looked great. And every doctor I ever met before having my sixth seizure said, in effect, “If it ain’t broke, don’t fix it.” But that seizure forced me to do something, so I switched to the pump. And I have not had a seizure since. That was 10 years ago. And it doesn’t prove anything about the pump, but it does prove, I think, that we have to constantly consider if there isn’t another way to get “Better.” We might as well consider the possibilities.
Q) I Run on Insulin is a blog about diabetes, but with a special focus on exercise and readers love to hear about other people with diabetes and how they stay fit. You make an excellent argument for “moving” consistently (exercising) in the book. Back in the day, you used to exercise twice a day to maintain a lowered blood sugar. What’s your exercise routine like these days?
I LOVE your blog, Alexis. I have tremendous respect for anyone who writes, and especially writes well, regularly on any topic. And I think it is fantastic that you are helping inspire people with diabetes to move. We need all the inspiration we can get.
I argue that we should move every day. I know the every day thing sounds dreadful, and on many dark cold wet days it is. But we really don’t have any choice. Our bodies were built to move constantly. That’s how they work. If we don’t move them regularly—not 3 times a week regularly, but, I think, every day regularly— then they just won’t work right. There’s no way around it.
I’ve been through every phase of exercise (I call it moving because I know that it doesn’t have to be a 4 mile run to affect our health). When I was young I was kinda chubby and hated moving. Then in my teens I got into sports and that triggered a couple decades of loving the sweat. That transmuted into obsession and my twice a day routine. I’ve come back to earth. I am now in what I call my ‘maintenance moving mode.’ I move just enough every day to maintain my health, weight, and eat some stuff that maybe I shouldn’t.
If you love extreme moving—marathons, kick-boxing tournaments, all that stuff—I say go for it. But it’s not necessary. I really believe that about 30 minutes of real physical exertion every single solitary day is enough for most of us to stay healthy. Provided we don’t just sit around the rest of the day. It’s not that much of a commitment, really. And when you are done after 30 minutes you will feel awesome. Not least because you are done until tomorrow.
Q) This book is incredibly inspirational, and manages to be funny, not preachy, with bits like “learn from the idiot” (referring to yourself as an idiot, which I am certain no one thinks to be true, you let people know you already tried something the hard way). What’s the single most motivating piece of advice you have for someone with diabetes?
That is kind of you to say, Alexis. Always nice to get, or share a little inspiration, where we can. So thank you.
And I’m glad you found parts of the book amusing. It was the only way I could write it. If someone were watching our diabetic lives from a distance, and they weren’t concerned with being insensitive and incurring our wrath, they would find a lot of it pretty funny. Shots and tubes and blood and all that. Since I have diabetes I wasn’t concerned with hurting my feelings.
For me, the most inspiring thing about our good friend and nemesis diabetes is that there is so much we can do to push back, to make it Better. I know so many people who live with so many conditions that they have no control over. I feel for them, and actually feel lucky knowing that if I work hard I have a real opportunity to live a long healthy life.
YOU can actually make diabetes BETTER. That’s pretty cool, I think. We can feel pretty lucky.
Q) Everyone has people in their lives that act like the “Diabetes Police.” These are the folks that, well-meaning as they are, manage to annoy the heck out of you by saying things like “should you be eating that?” And “what did you do wrong?” when there’s a 250mg/dL on the meter. How do you deal with the “Diabetes Police in your life?”
After many years, I have reached a peaceful place with the “Diabetes Police.” I just assume they only say things because they care. And Mark Twain, one of the funniest and most insightful American writers ever, reminded us that, “We are all ignorant, just about different things.” So just because I know a little about diabetes doesn’t mean everyone should. I don’t know anything about “Jersey Shore,” for example. Some would consider that pretty ignorant.
So when the “Diabetes Police” show up, I just nod, and try to answer questions with brief, maybe slightly helpful, mostly vague answers. And if someone seems genuinely interested, I might try to educate a little bit. Otherwise, I just let it pass. Mostly. Occasionally, I respond in some juvenile fashion.
Q) In your book you review various versions of “the cure,” from a closed loop system to fully functioning beta cells of your own. In your mind, what truly constitutes a cure?
A cure would be where I don’t have to think about any of it—blood sugar, how much I eat when, insulin—any of that stuff. But in all likelihood, based on my research, treatment for diabetes will be iterative. Our lives with diabetes will continue to gradually improve. Gradually we will think less and less about all the bits and pieces. And finally we’ll wake up one morning and say, “This feels a lot like a cure.”
But really, I don’t think I’ll ever give up caring about what, and how much I eat, and trying to stay in decent shape. Even when I’m cured.
I also think that’s it’s only a cure if it can be shared with the whole world. If it’s only something that a wealthy few of us in western developed countries can have, then it’s not really a cure. In my mind.
Alexis, thanks for the fantastic thoughtful questions and not asking me anything technical. Thanks for letting me be on your blog.
Thank YOU Chuck!