Soon after our eight-year-old son Briggs was diagnosed with Type 1 diabetes, I learned about TrialNet screening for relatives of people with T1d, and that Briggs’s big brother Jack and I were eligible. While it sounded worthwhile, and seemed like a civic duty, I didn’t consider that there might be something scientifically noteworthy in either of us. So we were in no rush.
More than a year went by before Jack and I had our blood drawn by a TrialNet phlebotomist. The opportunity placed itself in our path when we dropped Briggs off at diabetes summer camp. The whole thing felt perfunctory. The test tubes and tourniquets were set up at a card table in the camp’s dank, wood-paneled basement. No appointment necessary! Check that box on the to-do list. Task complete.
But following that initial blood draw, we got a call from TrialNet. Our samples revealed that Jack and I had autoantibodies indicating an increased risk of developing Type 1. That was unexpected. I knew that 96% of TrialNet participants have none of these autoantibodies, so it seemed too bizarre to be true that we’d both been flagged. To clear things up (I was sure they’d been mistaken), we made an appointment for more screening. Soon we were on our way to Joslin Diabetes Center for oral glucose tolerance tests, in our choice of fruit punch or lemon lime. My OGTT results were high enough to get me invited back for a second OGTT, where I was given a Type 1 diabetes diagnosis. Jack’s OGTT results made him eligible for TrialNet’s study of teplizumab, a drug that might stop or slow down the destruction of beta cells.
Fast forward: it has now been three years since our TrialNet journey began. Jack and I have both been diagnosed with Type 1 diabetes. This is hard to believe, and hard to say out loud without air quotes, because I think of Type 1 diabetes as my younger son’s gig. I also think of Type 1 as almost equivalent to its trappings. The gear that must be carried everywhere, the need for little notebooks and bags with many zippered compartments, the glucose tablets and individually wrapped cheeses. That’s why, when I was diagnosed, I shopped. I sampled all varieties of BabyBel. I decided which insulin pump I would use, and purchased a stretchy, metallic gold waistband to carry it. I still don’t have an insulin pump, and the waistband is in my sock drawer. When I catch a glimpse of its shimmer among the socks, I experience the same giddy dread I felt as a little girl examining a box of tampons. One day I’ll need you. I imagine it will be quite glamorous. But ew.
Jack was diagnosed much more recently. It came as an unbelievable surprise, albeit our third. But this time, I noticed the beauty of the TrialNet diagnosis. It is absolutely, undeniably, 100% non-scary. It is impossible to dramatize. It is so far from an emergency room or injection or possible hospitalization that the initial news of diagnosis feels almost abstract, like celebrity gossip. Did you know Nick Jonas has Type 1 diabetes? And also you. Since there’s no need to leap into action, the newly diagnosed person gets a chance to process the news, and wiggle around in it. While things may be falling apart on a cellular level, the whole person feels quite fine. Based on my experience, the gentle drop of a TrialNet T1d diagnosis is vastly preferable to the wilder, traditional style.
Although I was diagnosed three years ago, and Jack three months ago, neither of us has taken a speck of insulin. Having Type 1 diabetes but not needing to take insulin is weird. It is nothing to complain about, but it doesn’t make sense in most doctors’ offices, or spark joy among other people with diabetes. It is impossible to mention without later deciding it was unnecessary to mention, or maybe even rude, like when a stranger at a party starts to tell you they have gas. It flies in the face of everything we thought we knew. Type 1 diabetes has a sudden onset. (Mine has been the same non-event for three years.) People with Type 1 die if they don’t take insulin. (People like Jack and me still make enough insulin to live, work, and play.) Type 1 diabetes cannot be controlled with diet. (We only have high blood glucose when we eat a lot of carbs or are sick.)
TrialNet has given us access to health information that is generally inaccessible. And I’m grateful to have the information. But I’m not sure what to do with it. Should this phase of the disease process be an orgy of uncounted oatmeal and sushi and noodles and pies? Or should we attempt to slow the disease’s progression? Recommendations for that include essential oils and okra, as well as smarter-sounding things: adhering to a low carb diet, so the struggling pancreas can take it easy. Or avoiding gluten, to reduce inflammation. Or taking tiny doses of insulin to support the pancreas, so it will last longer.
Our endocrinologists seem certain that within weeks, months, or years, our endogenous insulin will disappear. Meanwhile, our plan has been to eat low carb, gluten-free meals of Greek yogurt with berries, or salads with nuts, or grilled fish with vegetables, followed by coffee ice cream with Heath bars mashed in. So far, it seems to be working.