Every January, for a few short weeks, the population of picturesque Marlow, New Hampshire, grows just a little larger.
A dozen or so high school students converge upon the storybook New England village to begin preparation for an epic adventure: a 600-mile circumnavigation of Vermont by backcountry ski, white water canoe, rowboat and bicycle, led by Marlow-based wilderness school Kroka Expeditions.
Under the mentorship of guides and woodsmen, the students learn skills to navigate the six-month, semester-long journey through the wilderness. There is no “how to” book, no survival guide—just a few unwritten rules to live by. But 18-year-old Rachel Hemond, who has Type 1 diabetes, doesn’t need much direction when it comes to survival.
She’s figured that out on her own.
Expect the unexpected
A sudden spike in blood sugar is how Rachel, then 14, ended up as a patient at Boston Children’s Hospital. An otherwise healthy child with no family history of diabetes, the Acton, Massachusetts eighth-grader went from being a kid who never had to think about what she ate—or how much energy she burned—to one faced with a lifetime of monitoring blood sugar, counting carbohydrates and calculating insulin doses.
High school was—for the most part—the honeymoon period. She sailed through without incident, managing her blood sugar with ease, in part because she remained active in sports.
Every six months, she checked in with Dr. Nina Ma, CCD, a pediatric endocrinologist at Boston Children’s at Waltham, and nurse educator Gretchen Waldman, MSN, RN, COE, both of whom have cared for Rachel since she was first diagnosed.
“One of the things Dr. Ma told me was, don’t let diabetes rule your life. You can still find your own path. You can still do what you want to do.”
For Rachel, finding that path meant testing the limits of her disease.
“I accepted it as a part of my life,” says Rachel. “I have blonde hair. I have blue eyes and I have Type 1 diabetes.”
The first time she participated in a Kroka expedition was the summer following sixth grade. It was a weeklong rock-climbing program. The next two years she completed two-week programs. But the most recent—and most challenging—during her final semester of high school, was her January-to-June trek through the Green Mountains with over 40 nights of winter camping in one of the coldest winters on record.
Use all of your senses
After three weeks, Rachel and 12 other students depart from base camp in Marlow. They will not see camp again until the beginning of June.
With 70-pound backpacks, they ski all the way along the Catamount trail, which runs up through Vermont to Craftsbury Commons and make their way over to the town of Hardwick. Days are spent trekking or gliding to their next destination, finding a campsite, collecting firewood and preparing food. Nights are spent on beds of pine boughs in hand-stitched canvas tents. There is no phone, no computer, no anything. The students write letters and keep journals.
“We are learning to speak without words; we are finding the language of the heart,” writes Rachel.
Each student has a job, such as gear manager, food manager, medic. Rachel, the sewing manager, is responsible for keeping everyone’s gear in the best shape possible. But she is also responsible for keeping herself in shape, which proves to be her most challenging obstacle.
“I had a lot of problems with my diabetes while I was out there.”
Rather than shots, Rachel receives her insulin through a small tubeless patch pump called a pod, which she wears on her hip, arm or stomach. The pod is controlled by a separate handheld device.
“I input my blood sugar and the carbs I’m eating, and it does all my insulin dose calculations. I can have different ratios for different times of day. It keeps my blood sugar in a really good range.”
What Rachel doesn’t take into account, as she begins her journey, is the pod’s adaptability to subzero temperatures. “The pod was dying almost every day. I had no idea what was going on.”
With base camp still within striking distance, Rachel leaves the expedition for four days to regroup with her doctors and parents.
“What we figured out was I’d been leaving the pods outside in my backpack at night. I was leaving pieces of electronic equipment out in the cold and expecting them to work totally fine.”
With a new strategy, Rachel rejoins the group. She sews what she calls pod-holders—little pouches made of wool she wears against her skin to keep the pods warm.
“Four or five of my semester-mates would carry them under down jackets and under their fleeces, and the pods stopped dying.”
Although her pods now are functioning properly, Rachel is having difficulty controlling her blood sugar. Ideally it should be at 100, but it is above 200—all the time. And the second leg of what is called the “Winter Trail” is far more isolating, the comfort of base camp no longer within reasonable reach.
Rachel is feeling anxious, tired and weak. She knows if she asks for leeway her semester-mates will give it, but she has never used diabetes as an excuse and isn’t about to start. On a Sunday, she leaves the trail, after completing the second leg. By Monday, she is at Boston Children’s.
“We changed all of my settings, ratios, basal rates—everything. It was all off. I had been fiddling with it on trail to see if I could fix it because I didn’t want to leave.”
Ten days later, Rachel is back with the group just in time for the transition to solo expeditions.
She is feeling good for the first time.
Sent out alone for 36 hours of fasting with just the clothes on her back, a sleeping bag, a water bottle and a journal, Rachel has made the difficult decision to turn off her insulin. She wants the most pure experience possible. Help is nearby if needed.
“It took a lot of monitoring; I checked every hour. I didn’t bring sugar tabs because I didn’t want to have that difference from my peers. That was a test to see if I can do the things everyone else can do. And I did it.”
Rachel Hemond had traveled through the seasons.
It will soon be time for her to set out on another adventure. Rachel will head to Middlebury College in the fall.
More often than not she misses the simple quiet of the woods and the constant movement. She likens the challenges of the past semester to navigating diabetes.
“Sometimes there are mountains in the way and no option but to go over them. You can’t go around; there are no short cuts. But once you get to the peak—you’ll see just how beautiful it is.”
Learn more about the Boston Children’s Diabetes Program.