I’ve been accused more than once of being too chipper about my diabetes. Heck — I have created “the sunny yellow blog,” after all. So when I received the following email this week, I sat back in my seat and took a deep breath. Writing a book about how much diabetes sucks certainly isn’t all fun and games for some:
I’m a writer living in New York City and have diabetes for over 50 years. My doctor, before he retired, was a past president of The American Diabetes Association and he knows, first hand, what a crazy life I’ve led. Many years ago I began a memoir about all the years of being diabetic, what it meant to and for me, and what it led me into and out of. I realized then, but even more today, that for some reason there are very few books that talk about the emotional roller coaster that people with diabetes are on.
There are books about the emotions that one goes through with cancer, heart disease, rare forms of genetic disorders, etc., but one rarely comes across “us” who face, on a day to day basis the mood swings, the concerns, the possibilities for heart attacks, strokes, amputations, kidney disease, blindness and the like, not to mention having to test, monitor, predict, cheat, lie, fortify before, during, after sexual encounters or those sticky, messy, unpredictable feelings that attach to us after we’re diagnosed with the illness, like “fragile” and “damaged.”
I’ve lived a life of madness and mayhem. I’ve had diabetes for 50 years and have been addicted to one substance or another for 45 of those years. It has been a beautifully joyful and painful schizophrenic ride: drugs, booze, women, music, writing, and learning with each new success or defeat. This memoir tries to come to grips with all of life’s fractures and contains everything — even you.
My memoir was going to be published by a major New York house until the economic crisis hit. My agent suggested I keep writing my new novel and wait until the crisis corrected itself. After forty-five years of writing, I was tired of waiting.
After thinking about serializing the memoir on a blog, I decided that it was the wrong way to go, and then found Smashwords, an online publisher who sounded honest, and thankfully was. The memoir came out a month or so ago and has garnered much positive review from some “lit” people, which is nice to hear, but not why I wrote it. The most gratifying response has come from diabetic blogs and forums where we exchange views about everyday things–something that in my 50 years I’ve never done with other diabetics — and their telling me that what I wrote has mattered to them.
Those niggling feelings of self-doubt and personal vulnerability, while not usually going away, is sometimes mitigated by talking to other diabetics who feel a kinship with them. There are no easy answers out there. I’ve always thought that “answers” are a bit overrated anyway. All people, certainly diabetics, either have experienced or will experience the complications from diabetes and from life. But for diabetics, those complications are simply more predictable. I do not believe in sugar coating anything, certainly about my life. There are diabetics out there, I know, who, as we speak, are acting against their own best interests in regard to their diabetes, and consequently their time here on earth.
When I noticed your essay in Newsweek and then your blog, I knew you reached many more people with diabetes than I do or could. I’m not interested in talking about the best glucose monitoring machine, insulin site, pump, diet, or “you too can live a wonderful and fulfilling life if only you use” this product. That’s for someone else to write about, or promote. And not without its own merit I might add. My little acre of hell are the emotional aspects of having a chronic disease; in fact, more than one chronic disease. I would welcome any suggestion you could make to “spread the word.”
NOTE: I just got word from Norman’s publisher that he’s checked into the emergency room at Beth Israel hospital today, possibly with a heart attack (unconfirmed). He is conscious and lucid enough to be giving directions, I hear. Godspeed, Norman!