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. I greatly admire the the current Joslin Center, whose staff no longer follows their founder’s judgmental approach. But I believed, during that week in the hospital, that I was a soldier in a war for my own life, and that it would be my fault if I lost that war. That metaphor came, in part, from “Combat,” a great TV show about World War II, and while in the hospital I tried to pretend that I was Kirby, a soldier who was my favorite character. But even without that show, thanks to Dr. Joslin and his disciples, it would have been easy to persuade myself that I was in a war zone.
What I recall is a series of lectures and an insistent, week-long murmur from all kinds of people in white coats explaining to me that if I followed their battle plan very very carefully, I would be healthy. No one explained what would happen if I didn’t follow the plan. No one said I might go blind if I didn’t huddle in a fox hole and let them stab me with a long needle to withdraw my blood every morning, or take my daily insulin shots without complaining, or learn –in classes taken with my mother– how to weigh and measure food and stick to a rigid diet without fail. Still, I had no doubt that it was up to me to prevent my own demise. Although terrified much of the time, I knew that I needed to obey Sergeant Saunders (played by the late, great Vic Morrow) so I could capture the nearby French village from the Germans.
We gauged our blood sugar by collecting urine, putting drops in a test tube, and adding a Clinitest tablet (a form of Benedict’s solution). The liquid boiled quickly. A blue color indicated there was no sugar in the blood, orange meant a lot of sugar. But to Elliot Joslin, this test was a measure of much more than glucose. In a speech in 1958, he sounded like a preacher warning about the fires of hell, or a judge at the Salem witch trials: “The idea has been raised that a diabetic should not feel he has done wrong if he has a poor Benedict test. I disagree.” The sight of the wrong colored test tube told him that “if uncorrected, the patient is headed for destruction “ rather than “a blue victory.”
The nurses would watch me test and praise me for every blue victory. I don’t remember any overt disapproval if I didn’t get that result. But there was no reassurance, either. An orange test tube conveyed that I had lost a very important battle, and that I was a complete loser, guilty as charged, DOOMED unless I changed my ways.
With no one to tell me otherwise, for years my sense of self-worth was wrapped up in those test results, and I blamed myself for some kind of elemental flaw when blood sugar control was erratic. This sense gradually faded as I got older, the guilt usually reduced to a very faint, judgmental whisper in the back of my mind by the time I got to college. But even today, I sometimes have to consciously tell myself to ignore it.
Now, had I been treated by Eliott Joslin’s chief nemesis, a physician named Edward Tolstoi, I probably would have been happier and more relaxed. But I probably would be dead by now, or a physical wreck. In the middle of the 20th century, Tolstoi and his followers opposed “terrorizing” patients with a strict regimen of calculating and carefully parceling out food. Tolstoi proclaimed:
We cannot not see what is gained by straining one’s effort to maintain the diabetic patient sugar free, except that the patient’s day is either made or ruined, depending on what his specimen showed. He becomes a worrier. He feels he is different, and has a code of do’s and don’ts, which do not help him psychologically.
According to him, as long as they took insulin, people with diabetes (PWDs) could eat what they wanted and would have no greater risk of complications than those who kept stricter control. Tolstoi railed against accusing people of “diabetic sins” because “the result, for the patient, is despondency…as well as frustration and guilt.’” He was right about that. He was wrong, dead wrong, about complications.
Studies done after he and Joslin died proved that intensive management of Type 1 diabetes aimed at normal glucose levels reduced the risk of diabetic complications. But, for too many doctors, PWDs and their parents, those studies confirmed Elliot Joslin’s unforgiving fixation on individual responsibility, on the expectation that one could consistently manage a disease that often defied- the best efforts of even fanatical zealots. At least Kirby and Sergeant Saunders understood that they had only partial control over their fates. I didn’t understand that at all, for far too long.
These days, the best diabetes doctors, nurses and educators try to help PWDs and their loved ones take responsibility for managing the condition but not heap blame on themselves–or hate themselves—when things don’t go well. But self-recrimination is still a problem. The folks at Diabetes Social Media Advocacy devoted part of an on-line Twitter chat in 2011 to comments on the statement: “Pretty much anything that is related to diabetes makes me feel like I did something wrong = diabetes guilt for me.”
I am (mostly) lucky that the gentle control freaks at Babies Hospital took Joslin’s advice. They instilled in me a work ethic that defied pre-determined outcomes, and a discipline that kept me (mostly) healthy. In fact, they probably helped me when I pushed hard for other goals, like sinking outside shots consistently in basketball, and learning to play old timey banjo well enough to seduce beautiful women in college, and rocking the literary world with splendid published fiction. I didn’t achieve any of them. But at least I have no diabetic complications.
Still, a little less Elliot Joslin and a little more Edward Tolstoi, a little less Sergeant Saunders and a little more War Resisters League, would have gone a long way towards helping me feel less tense and self-deprecating for my periodic bouts of poor diabetes self-management. For that matter, I would have found it easier to cope with my inability to play “Handsome Molly” on the banjo well enough to get Katie F. to sleep with me in 1975.