The Insulin Chronicles

Notes from a 50+ Year Diabetes Survivor

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Dan Fleshler

Eliot Joslin and the War Resisters League

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Elliot Joslin’s life ended on January 28th, 1962, a few weeks after I checked into Babies Hospital in New York City and my life with diabetes began.

Joslin literally wrote the book on the disease (the Joslin Guide To Diabetes, a popular guide for decades) and founded the Joslin Diabetes Center in Boston. He was well known for his fierce insistence on relentless, tight blood sugar control as the key to staving off diabetic complications. Not all clinicians agreed with him, but I’m fairly certain the diabetes clinic at Babies Hospital took its cues from the Joslin group in Boston

It was only after reading Cheating Destiny – Living with Diabetes, by James Hirsch, that I began to fathom Joslin’s influence on my psyche. Hirsch notes that Joslin had roots in Puritan New England, and that one of his ancestors was sentenced to death during the Salem witch trials. On Joslin’s office wall hung a picture of John Wesley, the founder of Methodism, who believed “each man could control his own fate through faith in God and virtuous conduct –a message of personal responsibility that Joslin would impart to his patients.” So he drilled into caregivers and patients the notion that diabetes “was not strictly a metabolic disorder but a profound moral challenge that tested the character of its patients…While he praised those who successfully managed their disease, he faulted others for their own demise.”

In other words, he helped to keep many people alive…and somewhat miserable. [Read more…] about Eliot Joslin and the War Resisters League

Why Am I Still Alive and Intact?

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What’s going on? After more than 50 years with Type 1 diabetes, I am not only still here; thus far I have none of the dire complications I’ve been hearing about since I was a little kid. By ticking off all the things that aren’t wrong with me, I don’t mean to brag, but to convey a sense of astonishment:

People with diabetes (PWDs) are at least twice as likely to develop cardiovascular disease as people without it. The odds against me are stacked even higher because of family history: my father died suddenly of a heart attack when he was only 40. His father died of a heart attack at the age of 53 (it was his third). I’m 59. My body shows no traces of cardiovascular problems. Why am I here at all?!

My kidneys are normal. My eyes are fine, there is no trace of diabetic retinopathy, one of the leading causes of blindness in the U.S. There is no diabetic neuropathy in my feet or anywhere else. I can still make love. Wounds in my toes sometimes don’t heal as quickly as I think they should, and that might have something to do with diabetes, but it’s unclear.

Yes, I’ve wrestled with lifelong depression, and there is strong evidence that depression is also a complication of what I used to call My Shitty Condition when I was a teenager, but it is also a complication of the human condition.

Why have I beaten the odds and remained intact? [Read more…] about Why Am I Still Alive and Intact?

Diabetes, Inner Chatter and the Monkey Mind

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In a fine essay about Type 1 diabetes, Riva Greenberg conveys how much mental energy is necessary to “stay between the lines” –e.g., keep blood sugar within the narrow range displayed on her continuous glucose monitor:

If you met me…you would have no idea that half my mind space is not free, like yours. It’s busy doing what it needs to do to stay between the lines: guessing at the amount of carbohydrates in my meals, then checking my blood sugar to see how well I guessed. If not well, taking another injection or eating.

Or I’m preparing and drawing up my shot of insulin, also guessing at the dose, and remembering where on my body I took my last three injections so I don’t inject in the same place which can cause scar tissue.

Or I may be switching my syringes, checking my stock of pen needles, putting on a new sensor, ordering more supplies, and feeling my blood sugar plummet when I only meant to lower it a small amount. Then berating myself for over-compensating…

…That’s why the simplest I can put it is Type 1 diabetes is staying between the red and yellow lines all day and night, every day and every night.

Well said. What’s more, the incessant chatter that dominates the inner life of people with diabetes (PWDs) can feel like a terrible burden. Much of the time, nearly everyone has what some meditators call a “monkey mind,” which leaps constantly from one thought branch to another, one feeling to another. But if you are an insulin-dependent PWD, you have many extra branches for your monkey mind to grasp, and it is generating more noise, more instructions, more screeching, than the minds of non-diabetics. And you feel like you need those branches in order to get through the day. Greenburg conveys a distinct sense of being embattled, grim and weary because of this, which I’ve often shared.

One way to ease this burden, like every other burden, is to laugh. Chuck Eichten offers an uncannily accurate picture of a PWD’s inner babbling about food when things are not going smoothly on the metabolic front: [Read more…] about Diabetes, Inner Chatter and the Monkey Mind

Chronic Disease, Empathy and Surly Traffic Cops

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“Don’t take anything personally,” Don Miguel Ruiz advises us in The Four Agreements, a memorable guide to Toltec philosophy. He gives one good reason:

All people live in their own dream, in their own mind; they are in a completely different world from the one we live in…Even when a situation seems so personal, even if others insult you directly, it has nothing to do with you. What they say, what they do, and the opinions they give are according to the agreements they have in their own minds…

It’s hard not to take it personally when other people are surly or otherwise unpleasant. But I need that ability in order to live and work in New York City, which sometimes seems like the international capital of casual crankiness and bad moods. Fortunately, I have been given a gift that makes it somewhat easier: my chronic disease, diabetes.

Don Ruiz is a wise man, but he missed something important about people. They say and do things not only because of the “dreams” –and words, and memories—thrumming in their minds. Their behavior is also prompted by what is happening in their bodies at any given moment. In fact, the dreams, words and memories thrumming in their minds are shaped, at least in part, by their bodies –and not just the “thinking” parts of their brains, but also their glands, organs, lymph nodes, bones, etc.

Even though it’s obvious that our own bodies affect our moods, it is easy to forget that this happens to other people, because we are lost in our dreams. So I try to use my diabetes to help me remember. Low blood sugar, for example, can make me cranky, silly, depressed or irrational—or all four. High blood sugar sometimes makes me lethargic and inattentive. [Read more…] about Chronic Disease, Empathy and Surly Traffic Cops

Diabetes, Depression and Chasing Away the Dybbuk

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One night in the middle of my senior year of college when I could not get out of bed, and I could not taste my food, and I could not answer the phone, and I felt that there was something vile and rotten coursing through my blood, it suddenly occurred to me that perhaps there was a “dybbuk” dwelling within. According to Jewish folk wisdom a few centuries ago, the dybbuk was the dark, sick spirit that possessed people and caused all kinds of maladies. For a few minutes, I seriously entertained the possibility that a dybbuk prompted the inner darkness that descended upon me periodically. Then the realization that I was resorting to primitive superstition made me even more depressed, and I dropped the idea.

I got better, much better, over the years, but the dybbuk/black dog of depression never seemed very far away. And I could never fully account for it. Somehow my particular set of stories, and my particular capacity to overcome them, and what little I knew about biochemistry never came close to explaining it. Maybe it wasn’t a dybbuk, but there often seemed to be something from somewhere outside of myself that grabbed hold, or threatened to grab hold, something beyond my control and imagining.

Then, on a winter evening in 2012, when thinking about thinking about writing about diabetes, I found a New York Times article by Alice Dembner with an evocative lede: “Millions of people face a two- headed beast – diabetes and depression – that gnaws at them from the inside out.” It prompted me to hope there was a chance to understand the dybbuk –or whatever it was that grabbed hold of me–and maybe even find new ways to ensure that it never returned. [Read more…] about Diabetes, Depression and Chasing Away the Dybbuk

Gratitude For Feeling Crappy

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I often don’t feel well due to stress hormones, which act up partly because I have Type 1 diabetes. But I try to feel grateful when that happens. Huffington Post asked me to respond to a presentation made by psychologist Kelly McGonigal, called “How To Make Stress Your Friend.” Here it is. And here was my response: [Read more…] about Gratitude For Feeling Crappy

Did Trauma Cause My Diabetes?

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The following essay by yours truly was originally posted by Scott Strange @ Strangely Diabetic.  A friend and fellow traveler with Type 1 diabetes, Scott is an astute observer of  the medical scene and passionate patient advocate. His blog and tweets (@Strangely-T1) are  well-worth reading.

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What caused killer t-cells to attack the beta cells in my pancreas, preventing them from producing insulin, making my blood sugar skyrocket, and triggering my Type 1 diabetes? That was in 1962. No one has come up with a convincing explanation yet. Scientists aren’t even close to figuring out the interactions between the environment, genes, the immune system and who-knows-what-else that result in Type 1 (T1) or Type 2 (T2) diabetes. If you travel around the Internet, it appears that the entire world is one big “risk factor” for these conditions.

Suspects identified by researchers that might play a role in T1D include the smoked mutton consumed by Icelanders between Christmas and New Year’s, various viruses,  early childhood respiratory infections, whey, cow’s milk proteins, the timing of solid foods in infants,  psoriasis, low levels of Vitamin D, and many more. Risk factors for T2D, besides the well-known ones like obesity, could include not enough sleep and phthalates in soaps, lotions, plastics and toys.

But the culprit that interests me the most doesn’t get much attention in the research labs: trauma and major stress.  When I was a kid, the conventional  wisdom was that traumatic events –loss of a loved one, accidents– played an important role in diabetes onset.  This appeared to be substantiated by a number of population studies in the ensuing decades, but the evidence hasn’t impressed major players in diabetes research. In a long summary of biochemical and environmental risk factors for T1D,  the NIH barely touches upon the matter, gives it a few throwaway lines:

Although investigations of stress and IDDM [insulin dependent diabetes] have, in general, reported positive associations, most studies have been retrospective and suffered from methodological difficulties in assessing stress and measuring its frequency, intensity, and duration. Thus, prospective evaluations of the interaction among stress, the immune system, and the occurrence of autoimmune diseases are warranted.

Sorry, NIH, but I am convinced that a specific traumatic event played a major, albeit partial, role in triggering my diabetes.

In a blog post that was mainly about my mother and Sonya Sotomayor’s parents, I described the onset of the disease 51 years ago. It happened very soon after my grandfather died. In my grandmother’s apartment in Manhattan, I was so terrified by the mournful screams from my mother and grandmother when they embraced that I ran away and hid. Within two days, after an earache, sniffles, a sore throat and ravenous thirst, I was hauled to a hospital and suddenly became a kid with a scary disease. [Read more…] about Did Trauma Cause My Diabetes?