A message from my teammate and colleague on the importance of this ride and what it means to him:
Dear family, friends, and colleagues,
In March, my sister began using a continuous glucose monitoring device, often called a CGM. Xandra was diagnosed with type 1 diabetes when she was eight years old, eighteen years ago this summer.
Xandra’s CGM is a small device that she implants weekly just underneath her skin. The device uses Bluetooth technology to send data every five minutes to a receiver that displays her blood glucose reading. On the display, a life-or-death graph: time is on the X-axis, Xandra’s sugar level on the Y-axis.
As a student at a law firm, I measure my work in tenths of an hour. Friends of mine who aren’t lawyers think that’s crazy. Xandra’s doctors advise, with good reason, that she measure her health in twelfths of an hour. You tell me which is crazier.
My sister says it’s fortunate that she is still able to sense when her blood glucose level may be dropping. Fortunate is a funny way to put it. It’s difficult for someone who does not have diabetes to understand the sensation of a low. Symptoms of hypoglycemia, or low blood sugar, vary from person to person and from day to day. They can include shaking, sweating, dizziness, hunger, blurred vision, difficulty concentrating, feelings of anxiety or irritability, and other changes in behaviour. Many people with diabetes have difficulty recognizing the signs and symptoms of a low—I guess that’s why Xandra appreciates that she can usually notice when it’s happening. After all, managing blood glucose levels isn’t just about tallying carbohydrates and accounting for physical activity. There’s another, less-talked-about factor that affects blood glucose levels: stress.
Xandra and our brother Nic, twins, were eleven when our family took a trip to Magic Kingdom. I was thirteen. Have you ever been on Space Mountain? The Disney World website describes the attraction: “Blast off on a rip-roaring rocket through the darkest reaches of outer space on this roller-coaster-type ride in the dark!” Space Mountain is terrible. I do not like roller coasters. I do not like roller coasters one bit. Nic likes them very much, and Xandra enjoys them too. She’d have enjoyed Space Mountain much more if I hadn’t screamed bloody murder the entire ride. My sister is fearless, and she cares deeply about my brother and me.
A roller coaster is a crude metaphor for the ups and downs that we encounter in our lives. Stress can be terrifying. Stress can also lead to happiness, like the thrill of thriving under pressure. And stress can result from a healthy tension between risk-taking and prudence. Xandra is extremely careful about what she eats, about when she works out, and about how she balances her job as a teacher with her relationships with family and friends and the energy she devotes to her many passions outside of work. I believe that the risks to her health, risks that she confronts daily in maintaining that balance, are intolerably high. I would ride Space Mountain till the end of my days if that would buy a cure to Xandra’s diabetes. I would do anything.
The Disney website qualifies the “thrill level” of Space Mountain. “Big drops, dark,” the site crows/warns. The experience of big drops in the dark is one of the main reasons that Xandra started using a CGM. It’s difficult enough to sense a low when she’s awake. A low in the middle of the night is one of the most daunting threats that Xandra faces.
My sister told me about the first time her CGM squawked loudly at two in the morning. It persisted until she roused to drink a glass of orange juice and eat some crackers and cheese before returning to bed. By contrast, I slept through the night. We were both staying at our parents’ house, ostensibly so I could look after our family dog Ella while our parents were out-of-town and Xandra was at work, but really so Ella could look after me and Xandra could look after us both. I was studying for my final round of law school exams at the time. Stress? What stress?
Xandra took her first CGM wakeup in stride. Notwithstanding the lost hours—try going back to sleep after that jolt—and generally feeling crappy, she was pleased that the technology worked. It helped her to avoid a severe low and a worse feeling the next morning. I’m an early riser and Xandra is not, but even I can tell the difference on mornings after she sleeps through a bad low. Sleeping through a low is very dangerous. There were a few times, particularly scary mornings over the years before Xandra had a CGM, when she could not get out of bed without help from a family member or a roommate.
In my letter last year, I told a story about my brother riding in an ambulance with my sister, terrified that she would never wake up. Xandra does everything that she can to manage her diabetes, and our family does everything that we can to support her. I wish I could say that the ambulance incident was the only time my sister has lost consciousness due to a low. It isn’t. The devastating part is that it will almost certainly happen again, no matter her efforts to avoid it and no matter the technology available to her. Technology, as we know, is fallible.
Sometimes I’m asked why additional research about T1D is so important, given the monumental advances made over the last century. Banting’s discovery of insulin changed the terminal nature of the diagnosis, and technology like CGMs do help. One recent study, for example, focused on the use of CGMs by women who are pregnant. “Premature birth or higher-than-average birth weights currently affect one in two babies born to women with T1D. As well, many of these new mothers are more likely to have pre-eclampsia and Caesarean sections.” The study found that “continuous glucose monitoring leads to a reduction in neonatal health complications.”
Those are important findings; the study’s authors called for physicians to extend CGMs to all pregnant women with T1D. But CGMs are not a cure.
Banting’s discovery in 1922 saved my sister’s life and the lives of millions of other people. But insulin is not a cure.
Diabetes will cut short my sister’s life. Long-term complications from the disease are innumerable, as are its effects on her quality of life. I wish for nothing more than for Xandra to have the chance to enjoy her roller coaster ride in good health—without waiting for an affirming ping of data twelve times every hour.
Last year, more than sixty of you together donated almost $5,000 to JDRF in response to the letter that I wrote about Xandra’s diagnosis and the long-term health consequences of type 1 diabetes. My family and I were overwhelmed by your generosity. Thank you so much.
Your support means more than words can say.