What a diagnosis taught me about work, mortality, food, and family.
The Summer I Turned Type 1
That's exactly how it felt: not like a diagnosis, but like an identity that happened to me.
Nineteen years ago, I was a postdoctoral fellow working long days, most of the time six or seven days a week. Twelve-hour days were common. Fifteen-hour days happened often enough that they didn't seem particularly unusual.
I was also waiting for the results of two fellowship applications, an NIH Postdoctoral Fellowship and a Muscular Dystrophy Developmental Award. I managed multiple experimental lines, each of which could have been a project for a postdoctoral fellow on its own. I traveled to national and international conferences to present my work. I was the person who said yes to hard things. At one point, that meant leading a screen of more than 300 mouse lines to find genes involved in disease.
My wife was pregnant with our second child, due that summer. I was stressed, exhausted, and losing weight. A lot of weight.
Over about three months, I lost more than forty pounds. I went from wearing extra-large shirts to wearing medium shirts. I hadn't worn a medium shirt since my junior year of high school. People in the lab were complimenting me on my weight loss. The postdoc beside my desk asked how I managed it, as his wife was trying to get him to lose weight.
At the same time, I was hungry all the time. I wanted snacks. I wanted fruit. I would get horrible headaches when I ignored the cravings.
My second child was born in July, and I barely slept. My wife had the day shift with the boys, and I had the night shift.
There was an easy explanation for all of it. I was working too much. I was under stress. I was tired. My body was responding to everything happening around me.
At least that was the explanation I was giving myself.
Something Was Wrong
Eventually, I started to wonder if something else was happening.
I went on WebMD. I didn't tell my wife. I entered my symptoms and started looking through the possibilities.
Cancer.
Diabetes.
Those were the two that stayed with me. My mother's side of the family had a history of Type 2 diabetes, so diabetes wasn't completely foreign to me. Cancer was a different thought altogether.
I was also urinating frequently, and I started doing something that seems strange now but made perfect sense to me at the time. I would drop to my knees in the bathroom and try to smell my urine. I had read enough to know that diabetes could make it smell sweet.
I couldn't smell anything.
So I secretly urinated into a red plastic Solo cup.
It smelled like my child's breakfast cereal.
That was enough. I made an appointment at the University Hospital on campus, and I was seen the next day.
The Diagnosis
Risk was familiar to me.
I had rock climbed and rappelled down cliffs, surfed, and whitewater kayaked. I had jeeped solo down Black Bear Pass in a Suzuki Samurai in southwest Colorado, and hiked near bears in Denali National Park in Alaska. I wasn't careless, but I was comfortable with the dangers I chose.
I had spent my life choosing my risks.
This one chose me.
The blood glucose meter read no number, just the word HIGH. My ketones were around 3.1 mmol/L, which was seriously elevated. The clinicians were surprised I was still conscious. They told me that people with numbers like mine often arrive in diabetic ketoacidosis. Some arrive in a coma.
I remember the urgency. They gave me insulin immediately to bring my blood glucose down.
There was no gradual introduction to the idea that I might have diabetes. The doctors suspected Type 1 because of how quickly the disease had appeared and the degree of insulin deficiency they were seeing.
One day I was a postdoctoral fellow working on experiments, traveling to conferences, waiting for fellowship decisions, and coming home to a newborn child and his brother.
The next day I was learning how to stay alive with insulin.
After the injection, I walked from the hospital to my wife's laboratory, a few floors above mine. We went outside and walked around the courtyard.
That was where I told her.
Weeks later, the laboratory results confirmed what the doctors suspected. I had autoantibodies against GAD65, a marker of autoimmune destruction of the insulin-producing beta cells. My C-peptide was severely low, indicating that my pancreas was producing very little insulin of its own.
If anything, I was hoping for Type 2. It ran in my family, and it seemed like a disease with more room to negotiate.
It was Type 1.
Telling Everyone Else
Eventually, I had to tell the rest of my family.
My dad made me a shirt. It said:
Straight Outta Beta Cells
I don't know whether he understood its cultural significance. I wore it once in front of him. Since then, it has hung in my closet.
I keep it there because of him.
Telling people at work was different. I told the postdoc who sat beside me, the one who had asked how I'd lost the weight. He backed away from me as if Type 1 diabetes were contagious.
I remember that. Probably a dozen things were going through his mind. As he walked away quickly, a dozen things were going through mine.
I had just been diagnosed with a lifelong disease. I was also supposed to figure out how to return to work.
What Does "Take Your Time" Mean?
People in science are generally kind when someone gets sick.
Take your time. Get some rest. Come back when you're ready.
Those are good things to say. I appreciated them. I also didn't really know what they meant.
My normal was six or seven days a week. My normal was twelve to fifteen hours a day. My normal was experiments that couldn't always wait, animals that needed to be checked, cell cultures that needed attention, fellowship applications, conference presentations, and helping with the new addition to the family.
What exactly did it mean to take my time?
Adult-Onset Changes the Story
I wasn't a child growing up with diabetes. I was an adult with a career, a family, and a body I thought I understood.
There is something about being diagnosed with Type 1 as an adult that is difficult to explain to someone who has lived with it since childhood. When a child is diagnosed, diabetes becomes part of the family almost immediately. Parents learn doctors, insurance, supplies, schools, and emergencies. They learn to count carbohydrates, recognize when something is wrong, and explain diabetes to the people around their child.
The child grows up inside that system. They meet the school nurse early. They grow up introducing themselves with, "And I'm a Type 1 diabetic." Responsibility gradually shifts from the parents to the child, until that child becomes an adult who has spent years learning how to live with the disease.
My experience was completely different. I already had a life, one that included amazing foods that did not require calculation. I knew when I was hungry, when I was tired, how hard I could push myself, and when an infection needed attention. I had spent more than thirty years learning how to listen to my body.
Then the rules changed, and my body did not listen to the old ones.
I wasn't learning how to live. I had done that already. I was learning how to live with diabetes.
There is also a complication that can make an adult diagnosis even more confusing. Type 1 is an autoimmune disease, but diabetes diagnosed in adulthood does not always announce itself clearly. I'm from "the Show Me State," but it was every new doctor who made me show them that it was Type 1 and not Type 2. The medical file never seemed to be enough. A new batch of tests was required. A more current diagnosis was expected.
This adult-onset autoimmune form is sometimes called LADA, or latent autoimmune diabetes in adults. It's also called Type 1.5, although the terminology and classification vary. In my case, the testing eventually made the answer clear. My body made very little insulin, and eventually my C-peptide level was not quantifiable. My immune system had produced antibodies against GAD65, a result that has been quadruple-checked.
I had Type 1 diabetes, even though adult-onset stories like mine sometimes get a skeptical look, and sometimes from people who have lived with the disease since childhood.
I didn't know yet that doctors weren't the only ones who would ask me to prove it.
The person I had been before diabetes didn't disappear. He just had a new set of rules to learn. And the first thing I had to learn was that knowing biology wasn't the same as living it.
I Knew the Biology
I had spent years studying biology. I understood physiology, feedback systems, hormones, receptors, and signaling pathways. I had taught physiology. I had spent years looking at how biological systems respond when something changes.
Now I had to learn one from scratch, and it was my own.
I read everything I could find. I learned about insulin, the complications of Type 1, and the increased incidence of other diseases in people living with it. I learned about nutrition, different types of fats, exercise, supplements, nutritional bars, and even Eastern medicine approaches. I was doing what scientists do when they encounter something they don't understand.
I researched it. Then I started experimenting.
That was probably the hardest lesson. I understood the biology, but I was now experimenting on my own physiology. Knowing what insulin does is very different from determining how much insulin I need.
How much would I need if I spent an hour in the gym? What happened after a three-mile run, or a five-hour hike? What should I eat if my blood sugar was dropping quickly, and how long would it take to bring me back up? What would happen if I ate before exercising? What would happen if I didn't?
Every answer depended on another variable.
I started with injections: bolus insulin to cover meals and corrections, and basal insulin to provide what my body needed throughout the day. The pump came much later. At first, my system was simple. Inject insulin. Eat. Exercise. Check my blood sugar. Repeat, and then repeat again.
The more I learned, the more I realized that no single formula could tell me what my body would do. My physiology changed with the food I ate, the exercise I did, the time of day, stress, illness, sleep, and dozens of other things I couldn't always identify.
I had spent my career studying biological systems that responded to changing conditions.
Now I was living inside one, and I had to manage it continuously.
Work Changed
Before diabetes, one question drove me: How much can I get done?
I went to sleep exhausted almost every night, thinking about experiments, data, papers, and what I needed to do next in my academic career. If an experiment needed another twelve hours, I stayed. If something needed to be checked on Saturday, I went in. If an experiment was finally working after weeks of failure, I wasn't thinking about going home. I was thinking about the next step.
After diabetes, another question entered my life: How do I get this done while taking care of myself?
That question changed everything. Long days became more complicated. Meals had to be considered. Blood glucose had to be checked. Insulin had to be calculated. A meeting could be interrupted because I was dizzy or had a headache and needed to do something about it. Before a conference or vacation, I had to think about how much insulin and how many supplies I needed, enough to get through the trip plus enough in case something went wrong.
Then there was sleep. In the beginning, I was checking my blood sugar with a finger stick five to ten times a day. Sometimes I would wake up in the middle of the night and check automatically.
Or maybe I wasn't waking automatically. My wife would nudge me until I woke up. She would probably never admit which one it was.
She worried about me at night. She would hear me moving around and wonder whether I was having a low. My sleep became part of her sleep, and that was something I hadn't expected.
I could manage a lot of things. What I couldn't do was put my body aside while I worked.
The experiments could wait.
My body couldn't.
Mortality Became Less Abstract
Type 1 didn't make me constantly afraid of death. It made mortality physical.
There was something my body required every day. Insulin wasn't an idea, or a medication in a cabinet that I could take or forget depending on how I felt. My body needed it every day.
That changed how I thought about the future. Five years. Ten years. Twenty years. Would I be there to see my children grow up? Would they have to take care of me someday? Would they remember the person I was before diabetes, the one who would climb a cliff, kayak a river, drive a Suzuki Samurai down Black Bear Pass, or hike through Alaska without thinking much about what could happen?
I wondered whether my children would ever really know that version of me. I also wondered whether they would carry some of my caution with them.
Those questions rarely arrived as dramatic moments. They were quieter than that. They were there when I checked my blood sugar, when I packed insulin for a trip, and when I woke up in the middle of the night.
Mortality had become part of the background of everyday life.
Food Became Information
Food changed too. Before diabetes, the question was simple: What do I want to eat?
After diabetes, food carried information. Carbohydrates, insulin, timing, blood glucose, activity, and consequences were suddenly part of the equation. A piece of fruit wasn't just a piece of fruit. A sandwich wasn't just lunch. A meal became something my body would have to process and something I would have to respond to.
I learned that two meals with similar carbohydrate counts could produce very different results. I learned that exercise could change what happened hours after I finished, and that eating before bed could affect an entire night.
The scientist in me wanted an equation.
My body kept giving me variables.
My Diagnosis Wasn't Just Mine
I was the person who received the diagnosis. My family lived with it too.
My wife learned the sounds of my blood glucose alarms. She learned what my lows looked like, and when I was acting differently because my blood sugar was changing. My children grew up with diabetes in the house: supplies in drawers, insulin in the refrigerator, meters on tables, sharps containers, glucose tablets. There was always something around that reminded us my body required maintenance.
When I traveled, my wife knew I had to bring enough supplies. When an alarm went off, she listened. My sons would make me aware of the alarm from the back seat.
Diabetes had entered my life through my body, but it became part of our family's life too. That may have been one of the hardest things to understand.
I could choose how I managed my diabetes.
My family didn't choose it. They had to live with the consequences of my disease alongside me.
Diabetes Changed Again
Diabetes didn't stay the same for nineteen years. Neither did I.
My insulin requirements increased. Over time, I developed substantial insulin resistance alongside Type 1 diabetes, something some people refer to informally as "double diabetes." The terminology matters less to me than the experience. At diagnosis, I was taking roughly 1.5 units per day. Nineteen years later, I take closer to 75 units.
The amount of insulin I needed changed. So did the way I responded to food and exercise, and the amount of work required to manage the disease. The diabetes I manage today isn't exactly the diabetes I was diagnosed with nineteen years ago.
That matters because treatment, and the way it is covered, is built on assumptions about how much medication or how many supplies a person needs. I've learned that those assumptions don't always follow the person. When I started using more insulin, some of my supplies stopped lasting as long as their labels said. Nothing was broken. I was simply using more than the label assumed.
Technology Became Part of My Body
I was slow to adopt technology.
I wasn't ready for an insulin pump. The idea of putting a device on my body, running a line into me, and having to do something to remove it was uncomfortable. It also meant more supplies and more things to remember. When continuous glucose monitors became available, I was interested, but I still wasn't ready for a pump.
At the time, the systems didn't communicate with each other the way they do today. The CGM could tell me when my blood sugar was going high or low, but I still had to respond. Sometimes the alarm would go off at 72 mg/dL. If I had exercised a lot before bed, my blood sugar could hover around 80 for hours while my basal insulin continued working.
I could sleep.
My wife couldn't.
Every alarm woke her. Sometimes one of the kids would come running into the room to see what was happening. The alarm became a sound associated with something being wrong. Every time it went off, it felt like a slap in the face.
Eventually, I moved to an insulin pump. That changed the system again. I no longer needed separate long-acting basal injections. The pump delivered insulin throughout the day and let me adjust as my needs changed.
It also created new problems. There were more supplies, more equipment, and more things attached to my body. A doorframe or a corner of the house could catch the tubing and pull the infusion set loose. There were more alarms. There were also more orders, more authorizations, and more phone calls to keep it all supplied.
But now there was more data.
Over time, the technology became much more sophisticated. The CGM and pump began to communicate, and the system could respond to changes in my glucose and automatically adjust insulin delivery.
The biggest difference for me was sleep. Technology didn't remove the work of managing diabetes. It changed the work, including during the hours when I was unconscious and couldn't make decisions for myself.
I slept better. My wife slept better. The headaches and dizziness became less frequent. I looked healthier, and so did she. She had more energy, and her stress decreased. That mattered to me as much as what the technology was doing to my blood sugar.
For the first time in years, my diabetes wasn't waking up the entire household.
A System, Not a Problem
Nineteen years ago, I thought being diagnosed with Type 1 meant learning how to use insulin.
I eventually learned that it meant learning how to manage an entire system. My body, my food, my work, my sleep, my family, my technology, and my decisions were all connected.
And staying alive with Type 1 requires more than insulin. It requires an entire system of care, technology, supplies, insurance, clinicians, manufacturers, and decisions made every day by the person living with the disease. In Part II, I'll look at what that system costs, and who decides what is covered.
If I learned anything in nineteen years, it's that diabetes is not a problem you solve. It's a system you maintain. And maintaining a system takes time, attention, money, and the people around you.
