At six weeks, doctors removed most of my pancreas. Then, at six months, they removed most of what was left.
It was an ordeal. I was born with a genetic condition that caused my pancreas to pump way more insulin than I needed, causing dangerously low blood sugars. In 1989, when I was born, this was called nesidioblastosis, and today it’s called congenital hyperinsulinism. The medical records show that I was cute and happy (and huge), but not yet healthy.
This all happened before my first memories. My parents raised me to think that everything was all right. The scars across my midsection — the train tracks — are nothing to worry about. That attitude basically defines my worldview today.
So once I finally came home from the hospital, I grew up like any other lucky kid. The challenges I faced throughout my childhood had nothing to do with my nearly catastrophic medical beginnings. That my life was so “normal,” that I could focus on studying baseball, becoming cool, and protesting violin lessons, was to the immense credit of my parents and Dr. John Crawford (deceased, 2005) and Dr. Samuel H. Kim (retired) at Massachusetts General Hospital.
The remnant of my pancreas today doesn’t produce enough insulin to regulate carbohydrate metabolism and, as a result, my blood sugar level. That’s not too surprising, considering that my pancreas is little more than a nub. Its paltry insulin production seems to have lagged through adolescence, though we don’t have longitudinal evidence to show that explicitly, and I was diagnosed with diabetes at the age of 19. I showed all the telltale symptoms: weight loss, physical weakness, frequent urination, thirst, and, as it turned out, a blood glucose level of around 600 mg/dL. (That’s really high.) I was working on a family farm at the time, and the other strapping, vigorous college students on the crew thought I was a lazy weakling. I was starting to think so, too.
The doctors and I set about reining in my blood sugar. No one, including the American Diabetes Association, suggested that I should try to log levels expected of a non-diabetic. They set moderate goals that would be achievable with moderate effort. The endocrinologist furnished me with insulin shots. The nutritionist reassured me that I wouldn’t have to make uncomfortable dietary changes.
This plan was apparently designed to manufacture success and build positive relationships with my doctors and my diabetes. And I see the rationale. It’s true that patients are better off when inclined to visit the doctor at all, so the doctor wants to foster cooperation. I suggest that cooperation could be fostered through respect and honesty rather than leniency.
Somewhere here lies a line between accommodating a patient’s comfort level and withholding information that could extend or improve that patient’s quality of life. Settling for mediocre results would not kill me immediately, but it would quicken the onset of diabetic complications (a comically mild term) such as blindness, nerve damage, high blood pressure, depression, heart failure, and death.
This sort of doctor-patient relationship reminds me of the perverse incentives that drive grade inflation in academia. Need an extension? I’ll give you that extension, that B+. I’ll make your life easy if you rate me highly on course evaluations, because that’s how I get tenure.
So I was prescribed insulin pens, which I used to administer injections several times daily. After a couple of years, I switched to an insulin pump, with its promise of flexibility and effectiveness. All the while, I tested my blood sugar compulsively and limited my carbohydrate intake.
This all worked to regulate my blood sugar levels. Using these tools, I exceeded the doctors’ expectations.
But success came at a price. More than once, I messed up. I miscounted my carbs and injected the wrong amount of insulin. I was caught without glucose tablets. I got frustrated with a persistent high blood sugar and overdosed. That’s called a rage bolus. My blood sugar hit 50, then 40, then 30. I lost consciousness. They found me having a seizure in the quad, and I woke up in the hospital.
This perpetual roller coaster left me angry, confused, and apparently unable to go about my business without stumbling into the ground. (That’s what happens when your blood sugar plummets. You get all shaky, the world spins, you lose track of reason, you try to pretend that everything is fine, you get ornery, you gobble down whatever sugar is on hand to reverse the tide. If you lose consciousness, you hope someone finds you and calls an ambulance.)
So in 2011, I stopped taking insulin. I thought I would be better off — safer — by controlling my blood sugar entirely through diet and exercise. The doctors were skeptical, but willing to let me try it.
At first, I had limited success. This was because I occasionally deviated from my strict lifestyle plan. I didn’t want to draw attention by being a finicky eater, by passing on the birthday cake that everyone was enjoying. When I moved to a new city and started a new job, I didn’t want to stick out. I felt like the new kid at school. I doubted that my new friends would accept me, strange eating habits and all.
I was insecure, and it came at a price. My levels floated, and with each exception to the “rules,” my resolve weakened. If I’ve already cheated five times this week, a sixth time isn’t going to make much of a difference. I became hostile to my family’s questions about how thing were going with diabetes. After a point, the optimism and determination that I pride so, the spirit that has brought me so far, fell limp. I tested less frequently. I squeezed my eyes shut and turned away from the numbers that stared back at me, bluntly, candidly, without lies.
When I finally showed up at the endocrinologist, my numbers weren’t so terrible. I still maintained a diet mostly low in carbohydrates and exercised semi-regularly. But the doctor was not totally satisfied, and she worried that I couldn’t do this without medication. She was sympathetic to my imperfect resolve, reasoning that everyone has moments of weakness, so I could have insulin on hand for those times, even if I wanted to use very little.
Give me six months. I asked her to let me have until the next appointment, six months, to get my numbers down. That was fine, she said, if I really wanted to put myself through it. Since that appointment, I’ve taken up running, eliminated processed foods totally, and slashed my blood sugar to well within the non-diabetic range.
What changed? Why am I no longer tempted by a Reese’s peanut butter cup on my commute, nachos at the bar, and cake on a co-worker’s birthday? The cupboard bursting with free breakfast cereal at work?
My most powerful tool is a way of thinking. I rejected, finally and without qualification, the notions that our food culture should drive what I eat. I no longer eat food outside my boundaries for the sake of a cultural experience. For example, if I visit Paris, I will not eat baguettes, and I have accepted that New York bagels are just not for me. There are so many other things for me to love and enjoy in life. I started to take pride in politely declining food that would raise my blood sugar. Each time was a little victory, a reward for my body. And it quickly became easier. I learned how to decline food with grace and comfort, which in turn made others comfortable with my choices. (I think.)
Lately, I’m often congratulated on managing my diabetes without insulin injections, as if I am a champion. This misses the point. My goal is not to be insulin-free, but to inject as little as possible. As it turns out, “as little as possible” equals “none at all” for me. But if some day, I need to inject insulin to manage my blood sugar, I will, and it won’t be a failure.
Folks often tell me that my plan works only because I have extraordinary willpower that most others could never realistically achieve. This is presumptuous, condescending, and, I believe, false.
It suggests that this is easier for me than it would be for other people, that the mountain I face is less formidable. That it was relatively easy for me to give up peanut butter cups forever.
It suggests that other people don’t stand a chance and should compromise their health for the sake of convenience. This notion has become so pervasive that official recommendations, such as those proffered by the American Diabetes Association, won’t actually optimize your health. It’s as if we can’t be trusted to use that information wisely. People with diabetes shouldn’t be forced or pressured to manage their lives in a particular way, but they should be empowered to make an informed choice. That first nutritionist assumed that I wouldn’t be willing to make the serious lifestyle changes necessary to living a long, healthy life, so she didn’t even present me with the option.
I wouldn’t be here today without Western medicine and the help of others. But we’ve a long road to the place where patients have the information they need, where doctors won’t hesitate to tell it how it is, and where corporate interests have been purged from public health conversations of massive economic and social importance.