“The Book of Better” is Chuck’s description, in words and pictures, of his life with diabetes and what he’s done to make it better.
I was delighted to have the opportunity to talk to Chuck and ask him some questions about Better.
Can you tell us about your diagnosis?
I had all of the usual pre-diagnosis symptoms—lots of drinking and peeing. I was lucky to be able to spend four days post-diagnosis at Children’s Hospital in Los Angeles. They did a fantastic job of helping me actually understand diabetes, and consequently what I could do to make it better. I really believe that what they taught me 35 years ago has made a difference in my life. My siblings still tell me that I was in a very bad mood for weeks after the hospital stay. Maybe I was angry about the diagnosis, but maybe it was just that I was a teenager and I would have been angry anyway.
I’m not a teenager anymore, so I’m much less angry now.
You claim, “I’ve made more idiot mistakes—accidentally and on purpose—with diabetes than you think would be safe.” Would you give us a few examples of idiot mistakes and of making idiot mistakes on purpose?
Oh, where to begin? The easiest idiot mistakes to identify are probably associated with my obsession with low blood sugar. I think for years the medical community concerned with diabetes was most focused on saving people with diabetes from the consequences of high blood sugar. So at some point my small brain leaped from “HIGH, BAD” to “LOW, GOOD?” That degree of simplification is pretty dangerously idiotic, as everyone knows. So, “on purpose” I made every effort to try to keep my blood sugars at an unsafe low level. At one point, my A1c measured 4.5, which is the level of a non-diabetic. So you might say, as I probably did at the time, “Well that must be good!—NON-diabetic!—Right? I win!” Unfortunately, that means an average blood sugar of around 80. Which means that a lot of the time I was walking around with only a little bit of fuel getting to my brain. I’m much better about it now. Far less obsessive. The insulin pump has made a huge difference in this regard.
Is this idiot enough? I have other examples.
That’s plenty idiotic! So, I like that you say you’ve had an “extended career” with diabetes. Putting diabetes in the category of job is certainly less depressing than thinking of it as a disease. Do you have any thoughts on this?
I don’t know. I guess saying I have a “disease” sounds pretty static. Like I got it and I’ve had it ever since. The End. When in fact, diabetes, and our relationship (or battle) with it is constantly evolving.
Maybe ‘career’ is a little too benign, but diabetes kind of reminds me of a profession —our work constantly evolves, we’re always trying to make it better, sometimes we fail and get bad reviews, other times we succeed and get a brief pat on the back. But there is always the implied, “but what have you done for me lately?” Your boss is never impressed with what you’ve finished. She just wants to know when your current project is going to be done. It’s the same with diabetes. You can’t rest on your success for more than a minute or two. And just like diabetes, you never get to a point in your career where you can say, “There! Brilliant! Done! I’m just going to coast the rest of the way.” I’m always trying to think of ways to outsmart my work, to make it happen more quickly, with better results and less pain. Every once in a while I outthink it. Not often. Or I think I have, but really, I have not. Just like my diabetes.
Can you tell us about your “other” career, and whether diabetes has affected it?
Of course. My other career is design. The term “design” encompasses a lot of terrain. I have designed all kinds of things—newspaper pages, t-shirts, Olympic-level athlete apparel, exhibits, comics, product packaging, fixtures, furniture, and now a book.
From the time I was a kid I liked to draw. And I liked to make stuff, like just about every other kid ever. Only, for some reason I never realized that drawing was for kids and so I never stopped. I remember finally waking up to the thought that all the other kids had stopped drawing and were doing other stuff. I think it was sometime in college. Or maybe a little after that. By then it was just too late to stop.
So I studied design in school. “Design” means making something the way that you want it. Like, “I am going to design some chopsticks.” Then you set about creating chopsticks the way you want them. If you liked chopsticks just the way they were, you wouldn’t bother trying to design any. Does that make sense? So I “design” things in the hope that I can make something better, even if just in my mind, than the way it currently exists.
I suppose diabetes has affected my career. Everything does, right? I was never really comfortable hanging out with everyone, whether in school, or at work, because I couldn’t eat and drink on everyone else’s schedule. And I couldn’t eat what they could eat—late-night pizza, vats of beer. So I’ve probably been less social than maybe would be great for my career. But it could be worse. I could be a presidential hopeful. Imagine trying to run for president and not being social. That would really affect your presidential career, I would think.
What’s your take on diet and diabetes? How restricted is your diet?
I say you can eat whatever you want. You just can’t eat as much of it as you might like, and you can’t always eat whenever you want to. Here’s the deal—most of us know that it is not what we choose to eat that affects our blood sugar—it’s how much of it we eat. But truthfully, that also applies to people who don’t have diabetes. You’ll get fat if you eat as much as you really want to eat. There are times when we should just say no to food, whether we have diabetes or not, because we really don’t need it. Right at that moment.
What I eat is not restricted at all. I believe our bodies still need everything that they’ve needed for thousands of years—protein, carbohydrates and fats. Depending on what is going on in our lives, we need more or less, but our brain needs fat, we need carbs for fuel, we need protein to make hair and skin cells. We can still have some crap food and some overindulgence. I try to communicate in the book that it’s really not that complicated.
You recommend people exercise daily. I assume that means you do. What kind of exercise do you do?
It’s a long story. I started moving every day over 30 years ago. I figured out that moving kept my blood sugars under control. Now, this is well known of course. But nobody told me, I just realized that it worked like a shot of insulin. It was amazing to me. Back then, I was on just one shot of insulin a day. Moving consistently would lower my blood sugars consistently over time. Once I figured that out, I never gave it up. Now I miss a day of exercise every few years. Usually for some really big thing. Like a hospital stay. The birth of my son.
Really, the human body has to move. It was designed that way. It starts to break down when it just sits there.
I run quite a bit because it is the most portable. You can do it anywhere and it requires barely any equipment. You can run in your dress slacks and flip flops if you get up early enough so no one has to see you. I love to bike, but it takes more time. I will sit and spin on the stationary bike in the garage with the monitor on if I’m babysitting. I used to lift weights a bit, just so I could look more awesome, but that didn’t really work. So I do pushups to maintain some tone in my old age. Over the years, I’ve done just about anything to get my fix—rowing, horseback riding, hotel stairs, jump rope. It works for me if it gets me to sweat for 30 minutes.
Does working for Nike inspire you to exercise?
Nike over the years has, I think, inspired lots of people to move. We’ve learned that inspiration is far more powerful than nagging. People want to be inspired to do the right thing. I think we’re all better for that.
But to move consistently I think, you also have to make it a bit of a habit. If I only exercised when I was inspired I would not be in very good shape. You have to get it to a point where it is just a habit. In the book I compare it to getting dressed in the morning. Rarely do we wake up in the morning and say, “I am just too busy today! I don’t have time to get dressed! Today is a stark naked day!” Nope. You just make the time to get dressed. You don’t spend time debating it. Usually. Moving should be the same. No question.
The style of your book is atypical for a diabetes book… large fonts, sentences all in caps, illustrations… The tone is atypical as well with a playful/ (e.g. “learn from the idiot) childish element (e.g. calling diabetes a “scary monster.) Why did you choose this look and tone? Were your choices influenced by creative successes you’ve had at Nike? Or elsewhere? Do people respond well to information presented in this way?
Largely the tone of the book reflects my own childishness. Ask anyone.
And sure, my approach reflects what I’ve learned working at Nike. Doing creative work at Nike, and elsewhere, has taught me a lot about the most effective way to communicate. 1) Be honest 2) Be honest, but don’t get too serious about it 3) If you want to move people, treat them with respect, and inspire them.
What I’ve also learned is that you can’t—you shouldn’t—approach the same old thing the same old way. And if you think you have something important to say, sometimes you have to figure out another way to express it so people will hear it. My decision to use all the things you mention was in part because I had never seen any of it used to talk about diabetes.
The slightly bizarre approach works because it makes us think. It makes us look at things differently. And I wanted all the information to be accessible to everyone—kids and parents and doctors and young adults and grandparents. I love thinking about that broad expanse of an audience and imagining about how each of them might respond to something I put down.
So that’s part of it, and the other part is that, truly, for better or worse, that is how I communicate. My odd way with a sentence drives my poor wife, who is a good writer with impeccable grammar, crazy. For a while it drove my editors crazy too, but after a while they just gave up. I think they realized that the book would never be published if they had to save all the grammar I had strangled.
There’s a chapter in your book called “Top 3 Good Things About Diabetes”. Can you tell us at least one of those good things?
That’s easy. The BEST thing about diabetes is that YOU, the person with diabetes, is in charge of making it BETTER. That’s the Good Thing. Because there are lots of medical conditions where there is literally nothing you can do but pray, and hope. There is LOTS we can do to make our diabetes better. And those things are not complicated, and they don’t come in a bottle. They aren’t easy, but nothing worthwhile is easy. My dad told me that a long time ago. I used to hate it when he was right, but I’m okay with it now.
What do you hope people will take away from your book?
That last answer is my intended take-away: YOU. The best thing is YOU. YOU are the one who can make it BETTER. That’s the short answer.
Here’s the long answer: A good friend of mine bought a copy of the book and she doesn’t even have diabetes (clearly a good friend!). Not only did she buy it, but she read it (clearly a really good friend)!
After she read it she wrote me and told me about a challenge she had committed to. I can’t say it as well as she wrote it, so here it is:
“…If I can’t do the whole thing I’m going to feel like such a fraud; I told people I was going to do it, so not being able to finish would be the worst thing.
But maybe not.
You see, I just love the idea of “Better.” It saves the entire situation. It’s Better to try this, even if it gets uncomfortable, than to have regrets for not trying. It’s Better to raise $2300 for breast cancer research than not to. Even if I can’t finish the whole walk, the money is still going where it needs to. It’s Better to do any part of the walk than nothing. Plus, I might even be able to finish–nothing indicates that I definitely can’t. It’s Better to look at the accomplishment here: money was raised and I will have gotten to participate in something so worthwhile and so much bigger than myself, than to focus on whether or not I did it perfectly. And of course this: even if it hurts some, it’s Better to be uncomfortable for a few days than to have this terrible disease of breast cancer. I think most people would trade the one for the other.“
Isn’t that the most amazingly inspired note ever? It would have made me cry, if I could admit to that. It never occurred to me that someone without diabetes might just apply Better to some other thing. The limits of my perspective know no bounds.
So it would be wonderful if I could move a few people to push for Better. Better diabetes, or even Better some other thing. That would be pretty great.
The Book of Better is available on Amazon.