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:
Hello Amy,
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.”
Hang on,
Norman Savage
http://smashwords.com/books/view/715
http://tinyurl.com/d2kma9
http://normansavage.blogspot.com/
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!
Thanks for sharing this, Amy. Not that I’m happy other people have had a lot of difficulty on the emotional roller-coaster of diabetes, but when it seems like the diabetics online are predominately well-adjusted and have never fought it tooth and nail, it’s reassuring for me to see a few for whom diabetes has been a formidable adversary. Just like I appreciate knowing other diabetics who ‘get it’ in regards to living with diabetes, it’s good to know other bad or formally bad diabetics who ‘get it’ in regard to that experience and all that comes with it. I think that’s a path that’s unknowable unless one has actually stumbled down it.
It’s hard for me to have sympathy for uncontrolled diabetics, be they type 1 or 2. We have a disease, but we can still choose health. And I’m grateful for that. For many people with auto-immune illnesses, there’s no element of choice in their disease progression. But I am a health nut, so I’m fairly judgmental of all people with unhealthy lifestyles.
Hi, Amy,
Thank you so much for introducing this amazing memoir to your readers. Having just finished reading JUNK SICK, I must say Mr. Savage’s book stunned me with its honesty, clarity, and self-understanding.
Altho’ I have T 2, the expression of the emotional roller-coaster ride all diabetics experience (so exquisitely and intimately told in this book), makes me feel less isolated. I will long remember this book for the shift it caused in my thinking. They sure don’t write them like this anymore.
I won’t judge another human being on how he has chosen to live his life. All I can do is sit in awe of this story of disease, family, choices, the descent into addiction–and marvel at Mr. Savage’s survival as he maintains his intelligence, wit, and humor.
JUNK SICK is a must read, not only for diabetics, but for those with an appreciation of history, jazz, Greenwich Village, Coney Island, and so much more. It’s a gift. I am better off having read it and you will be, too.
Lauren, please realize that not all Type 1 diabetics CAN control their disease. Some of us test 12x per day, eat extremely healthy (no processed foods, period), measure and weigh everything, track our CGMS all day (well, when it’s accurate), adjust our pump all day, and still have hard to control BG levels. If it was that easy to replace beta cells with external insulin, we wouldn’t urgently need a cure for Type 1 diabetes, would we? It would just be an ‘easy to manage’ disease. But we know that it’s not, or none of us would ever become unwell despite our best efforts.
While it’s great that your Type 1 is easy to manage, not all of us are that lucky. I am disgusted that one day as I lay dying of diabetes, or a hypoglycemic seizure, etc. that some ignorant person or medical staff will say that I brought this agony on myself. I did not. I spend so much time on diabetes control that I qualify for a disability tax credit (14 hours or more per week). This is just to live and stay out of a coma. It’s hard to be your pancreas in Type 1 diabetes, and some just can’t do it. You need intelligence, resources, time, dedication, and resistance to burnout after 25+ years of daily diabetes. Add complications to the mix, and many just give up. I don’t blame them. Type 1 can be a horrible disease.
That said, I do agree with you 100% that I have no sympathy for those who knowingly abuse their bodies. The worst is those who COULD be healthy but won’t change their habits. They cry about having to drink water instead of pop…..For people with preventable chronic illness, and those who are obese, no one can help you but you. You must take responsibility for you.
Hello Norman Savage,
Its Great to hear someone Share their Feeling about their Diabetes
Experience My Wife she’s a Diabetic And I’ll notice Over the ten years
that she’s had to deal with it along with I Having to Share in Her Emotionals it can be Challenging But I Thank God for all the new insight
and Research that been uncover..,Mr. Savage Thanks for Sharing Continue to Be Bless o.k.
Sincerely,
Thank you for posting this letter to you. It’s not always so easy, as Lauren makes it seem. I have down days, and when I do, I go off the wagon, so to speak, and eat things I know I’m not supposed to. That’s just how it is sometimes. I certainly have never gone to the extremes that Norman has, but I also haven’t had to live with diabetes for 50 years yet; that’s actually quite phenomenal, if you ask me.
Hello Amy, and all those who commented,
I just returned from Beth Israel Hospital a few hours ago after spending four days there. I don’t know about anyone else, but I’ve always had quite a few problems when hospitalized because usually most docs/nurses do not know much about Type 1 diabetes and even less about multiple injections, titrating insulin, carb based diets, etc., and are less inclined to listen to patients, no matter how long they’ve been diabetic and no matter what their endocrinologist stated they wanted done.
Be that as it may, any day one “walks” out of a hospital, vertically, is a good day. And this was a good day. The cardiologist that attended me, after four days of monitoring, after an angiogram revealed that my arteries were still “clean,” suggested that I first try some medication to right the “ventrical” ship and then, in a few weeks, after wearing a heart monitor, will see whether or not a pacemaker or defib device is necessary. Folks, life after forty is maintenance. For everyone, but particularly for diabetics.
I’ve been quite taken with all your comments. Even the comment from the “health nut” taking me–and I imagine all those–to task who disregard medical necessities in trying to navigate and negotiate themselves through this business of living. I make no defense nor apology for how I’ve lived my life. T.S. Eliot, one of my literary heros once wrote, “After such knowledge what forgiveness.” I’ve ignored and pushed hard in the opposite direction. Still, there are certain realities, and one of those realities is that no matter how much one tries to adhere to whatever discipline one needs to get through this life, life will, arbitrarily and capriciously bite you in the ass at the most unexpected times. One cannot live this life perfectly. I can remember being enrolled in The Diabetes Self Management Program–an offshoot of The Joslin Clinic–where we ate the same exact thing, exercised in the same exact way, took our insulin at the same exact time, everyday for five days running, and still our blood sugars bounced around. How does stress, dreams, genetics, or dumb luck play out in our lives is something that the scientists will never be able to explain. I once wrote, almost forty-five years ago: “the truths of scientists are nothing compared to the truth of the moment.” And if one gets by in this life without having a bad love affair, job, or jelly doughnut, well, that kind of boredom has never been my particular desire. Not that I have any thing against supremely well-rounded people. I just have never been that much interested in them. And usually they’re not very much interested in me either–except at pointing out to themselves or others that this is not somebody worth thinking much about. And that’s O.K. too. We have too much of the Oxygen, Lifetime, Father Knows Best, kinda thing, and not very much IFC. It’s not my mission to debate that, but it is my intent, to make the vision a bit wider. At least to the point where “pre-existing conditions” are not, in and of itself, reason to be denied health insurance in this country.
What I also wanted to make crystal clear in my memoir is that knowledge is indeed, if not power, than powerful enough to fight many forces–especially the internal demons. If one knows that sometimes one’s moods are closely tied to blood sugar and not some inner “fault” or whim, or “choice” then maybe the spiral of self-recriminations can be shortened and some truly destructive behavior can be shortened if not eliminated. Hell, there might be a chance for me yet.
Again, thanks Amy, and for all those who struggle and survive. A buddy of mine, Harry Crews, a fellow writer once wrote, “Survival is triumph enough.” Today was a good day–for all of us.
Later,
Norman Savage
Keep up the good fight, Norman! No apologies. You’re a strong voice for us type 1′s out there. We’re misunderstood. Thanks for the window of understanding.
Jennifer
type 1, diagnosed at 12 in 1978
It all comes down to choices. You can choose to control your diabetes or you can choose to let it control you. And in making a choice, you create the life you want to live. No one else can determine that for you.
Having been a type 1 diabetic for 36 years, I have had rough moments, but I cherish my diabetes. I view it as a gift that has made me really tune into all aspects of my life – body, mind, and spirit. The challenging moments are just reminders that I do have diabetes and life is not perfect. But it is great:)
about a month or so ago I was so sick and was on the edge of going into a coma. If I lived alone I surely would have. Why? because I abused my self and found that eating healthy was boring and I really enjoyed my pop and chocolate. I just love food that tastes so good. faught against my disease and refused to allow it to make me change my eating habits.
Anyways, I made some real healthy changes after leaving the hospital it would make you wonder why I still have badly fluctuating blood sugar levels. I was taking Novolin 30/70, 80 units in the morning, and 90 units in the evening. Then got switched over to 25/25/25 ‘units’ of Humalog throughout the day and 50 units of Lantus Glargine before bed. I also take metforman half tab three times a day, Altace (Ramipril) once daily, and Caduet once daily.
I suffer from major depression throughout my life and so I am unsure if my mood swings are the result of that or the result of the diabetes. It seems that the direction I am headed is going to be a long life of suffering through where other with diabetes have been. Im preparing for the worst because so far I dont see the light at the end of the tunnel.
Anyway, I cant wait to read your memoir.
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I am an uncontrolled diabetic on the insulin pump. Type 2 I think. I still need to learn alot even though I have been at it for 10 years. I also have other autoimmune diseases and I would love to read your book! I have this urge to throw away all meds and just live until I die cause I sure feel like I have been missing out on living life dealing with all these diseases and medications worrying where the money is coming for next month supplies…need to read something different than what I have been. Will be looking for that book!