Outdoorsman Tim Duffy Pushes the Limits
An adventurer with diabetes wins a battle against discrimination
Tim Duffy loves a good challenge. So it should come as no surprise that the adrenaline junkie and professional outdoorsman refused to ditch his skis, backpack, ice pick, kayak, or surfboard after being diagnosed with type 1 diabetes in 2006. In fact, he's only pushed himself harder since then: preventing avalanches and providing first aid and evacuation support as a ski patrolman in Utah; leading groups on backcountry ski and climbing trips as a mountain guide in Alaska; and helping to save the life of a man who was stranded, snow-blind, and in serious health trouble at 17,200 feet on Mount McKinley, among other exploits. Oh, and then there's the purely recreational mountain biking, fly-fishing, and surfing at various far-flung locales around the globe.
Through all of the rugged travel, subzero temperatures, precarious search-and-rescue operations, and other potential hazards, Duffy has always managed to keep his diabetes in control, checking his blood glucose six or seven times a day and responding accordingly, whether he's hanging from an exposed mountain face, camping on a glacier in minus-20-degree weather, or floating in a cold mist on Prince William Sound.
"I've never taken well to being told I can't do something," says the 33-year-old adventurer, over the phone from Kashmir, where he spent the winter in the Gulmarg ski area, assessing and controlling slides, training the local patrollers, and, of course, shredding up as much of the huge terrain as possible. "To some degree, diabetes has given me even more drive. This [type of experience in Kashmir] is the heart of my lifestyle, and I've been at it for long enough that doors have opened and I get some really sweet opportunities, and I'm not about to have my health be the reason I can't continue. I'm definitely going to keep pushing myself, pushing the boundaries."
Needless to say, it didn't sit well with Duffy when he hit a major career roadblock last spring, solely because of his diabetes. After a typical winter of ski patrolling, he decided to return to sea level and buy Pangaea Adventures, a local kayaking outfit in Valdez, Alaska. As part of his new gig, the fledgling entrepreneur needed to be able to captain a passenger boat for his clients, which required a Coast Guard–approved Master of Inland license. Duffy is a talented, supremely fit athlete who grew up in coastal Maine and has spent much of his life on and around the water; it never occurred to him that there might be a problem. So he submitted his application in January and then set about preparing for his first summer at the helm of his company. Eight weeks later, he received a request for additional medical information—the start of months of frustrating back-and-forth that culminated with the Coast Guard denying his application.
"The thought never crossed my mind that I'd be rejected, and to me, it felt like the ultimate disservice," says Duffy. "I knew I had to fight it, because it was preposterous . . . but also, if I were to give in, I would basically be giving up the business—the allure of leading boats around Prince William Sound—and I wasn't going to do that. That's why I got into this to start, and I had to see it through. "
Back in the late fall of 2006, Tim Duffy was just another ski bum at Utah's Snowbasin Resort—albeit one whose primary job was to detonate high-powered explosives across the mountain to help manage avalanches. He was spending some 50 hours a week in ski boots, but for the first time in his life, the young extreme athlete just wasn't feeling great: It started with an unquenchable thirst, then frequent urination and unbearably dry skin, mouth, and eyes, to the point that his vision began to falter. Since he'd had some basic medical training for his patrol and guiding work, diabetes did cross his mind, "but I thought 'there's just no way,' " says Duffy, who has no family history of the condition. He ignored his worsening symptoms for a few weeks but eventually ended up at the resort's clinic, where his blood glucose registered 477 mg/dl.
After detouring for one last carne asada burrito—"the famous last supper," he calls it—Duffy made his way to the emergency room. Over the next few days in the hospital, while doctors tried to level out his system, he read everything he could about diabetes and tried to come to terms with his diagnosis. "Basically, I came to realize that it was all my worst nightmares gnarled into one nasty ball," he says. "It was a major hit because I have always been a rabid eater. . . . Not to mention I hate the idea of clutter and excess baggage and being dependent on anything, really." He allowed himself a single moment of self-pity: "I remember feeling pretty out there at that point, pretty hung out to dry."
Still, instead of giving in to that initial despair, Duffy decided to view diabetes as one more adventure challenge, just another fierce ski run to master or killer wave to ride. And so, with the help of his endocrinologist, he set about fitting the condition—and all of the required maintenance and equipment—into his lifestyle. He immediately started trying to eat more healthfully, for one thing, and began checking his blood glucose frequently—eight or nine times a day, to start—while using both background and mealtime insulins. "I'm not as up to date as some people—I'm not pumped yet—because I seem to be responding well to the system I'm on, which is basically just a glucometer with test strips, and my [insulin pens]," he says. "Like I said, I'm not a big fan of clutter. To have a pager hanging from me doesn't entice me at all, especially when I'm out there wrecking on skis all the time."
Other adjustments included locating the perfect set of ski bibs, with enough chest pockets to carry his blood glucose meter, insulin supplies, and an emergency snack stash at all times, and close to his body heat. He also has dry bags for when he's on the water and a travel cooler that works with gel crystals for places like Kashmir, where there's no refrigeration. Duffy has perfected the art of checking his glucose as quickly and efficiently as possible, in order to limit exposure to extreme elements, which can cause a meter to malfunction. In addition, he has learned to be sensitive to any necessary changes in his routine, which can vary, depending on the climate and his activity level.
That's not to say that he hasn't struggled, especially at work. "In guiding, it is your job to look after your clients and make sure they're hydrated, their feet aren't blistered, that they have energy, they're not frostbitten, that they're just in all-around good form," he says. "But now, here's someone more at risk than anyone, charged with having to look after everyone. So there's definitely some added pressure to stay steady yourself."
Tough, but manageable. "It's definitely taken some work, but in the end, I responded [to diabetes] better than I imagined I would have," says Duffy, who has had excellent blood glucose control, and has never had a hypoglycemic event or required assistance of any kind. "I'm a pretty particular guy, I have decent attention to detail—I figure I'm an all right candidate for this condition."
And yet it was just when Tim Duffy felt he had a good handle on balancing his health and his extreme lifestyle that his diabetes stopped him in his tracks. It started with the Coast Guard's initial request for more extensive information—specifically, a heart stress test and an eye exam, both of which he aced, and then a printout of six months' worth of blood glucose readings.
Although his endocrinologist proclaimed him a model patient and hailed his excellent diabetes management, the Coast Guard was concerned with the blood glucose review—namely, "several readings specifically below a blood sugar level of 60, with two readings as low as 28 and 21," which, it said, could indicate hypoglycemia and pose a risk to maritime safety.
Duffy was flabbergasted. "I remember thinking to myself when they first came back and asked for my glucometer numbers that there were a couple of high ones in there I was worried about. The lows never even crossed my mind," he says, explaining that when he recorded those results, he was on a frigid mountaintop feeling fine. In fact, in addition to a normal 15 percent margin of error, blood glucose meters are notoriously finicky in extreme conditions—in temperatures below 43 degrees Fahrenheit, at relative humidity above 90 percent, and at altitudes above 10,000 feet, to be exact, according to the One Touch instruction manual. That's basically Duffy's entire home playing field.
His endocrinologist, Deborah Hackett, MD, concurred that the Coast Guard's concerns were unfounded. "All diabetics who are tightly controlled will have low blood sugars," she says. "[Tim] had a few, but he was coherent—he didn't require resuscitation or intervention—and mechanical error could clearly have been at play, too, because of the conditions," she adds. "Tim is very compliant. He pays attention to his body signals and has done a really great job controlling his condition since his diagnosis, which is the only time he's ever had an A1C over 7 percent."
Yet despite her further explanation and wholehearted support—plus a plethora of glowing letters of recommendation from people he'd worked with in dangerously extreme conditions over the past several years—the Coast Guard rejected his application in June, saying: "We will not approve waivers for insulin-controlled diabetic mariners who show repeated low blood sugar levels below 70."
Duffy, who was then fully in the throes of the intense summer tourist season in Alaska, struggling to get up to speed on running a business, was completely overwhelmed—and livid: "I thought of all the fat, smoking, unhealthy boat captains out there that, no questions asked, were afforded their licenses. All logic deemed me competent and worthy, but it was this large, impersonal blanket policy they were casting over me. It was this grand generalization that made no sense."
His endocrinologist was taken aback. "It was unbelievable [that he was denied the license] because he had 'insufficiently controlled insulin-dependent diabetes,' because in my records, again, he never has had an A1C over 7 after his diagnosis," says Hackett, who works at the endocrine and diabetes clinic at the McKay-Dee Hospital Center in Ogden, Utah. "You just can't have a one-size-fits-all policy for diabetes. People have different presentations of the condition, different lifestyles, they eat differently—all of those factors enter into how they manage their diabetes. The fact is that diabetics are individual patients and need to be treated accordingly. You need to look at the whole picture, especially when making decisions that impact people's lifestyles and livelihood."
|Tim Duffy with Janel Wright, the administrative law judge and ADA volunteer who helped him fight the Coast Guard.|
Duffy knew that his new business venture depended on his fighting the Coast Guard's decision. Unsure of what to do, he asked the American Diabetes Association for help. A lawyer in the legal advocacy department put him in touch with Janel Wright, a member of the Association's Advocacy Attorney Network. The chief of adjudications for the Alaska Division of Workers' Compensation in Anchorage, Wright received special permission to represent Duffy, pro bono, in his appeal. She was immediately convinced that he deserved to be a boat captain. "I knew it was disability-based discrimination. That was very clear to me," says Wright, a former civil rights attorney who has type 1 diabetes and is chair of the Association's Advocacy Committee. "When I talked to him and read his case paperwork, I thought, 'Oh my God, Tim Duffy, I want the kind of control you have. This is damn near perfect—how dare they deny you the credentials?' " Wright adds. "My initial thought was: 'This justification is completely and totally bogus; they just don't have an adequate understanding of the science of diabetes.' "
Wright knew that Duffy needed not only legal assistance but also the help of a medical expert on diabetes. So she turned to yet another ADA volunteer in Alaska, endocrinologist Samuel Abbate, MD, to clarify why any medical concerns about Duffy's low blood glucose readings and potential hypoglycemia and hypoglycemic unawareness were unwarranted, and to explain why this young man was absolutely qualified for a Master of Inland credential.
Abbate's opinion was crucial to Wright's "request for reconsideration," which focused on correcting the Coast Guard's flawed assumptions and stereotypes about diabetes. Just in case, Duffy and his doctor also altered his routine, incorporating a sliding scale where he would slightly adjust his meal-bolus ratio and his correction factor when active, in order to further eliminate the possibility of severely low blood glucose and alleviate any remaining safety fears.
Happily, as a result of this collective effort, Tim Duffy finally became a boat captain last December, nearly a year after his initial application. The victory came without any fanfare whatsoever: The Coast Guard, which declined to comment on Duffy or any aspects of his case for this article, never responded directly to his appeal; it simply sent him an e-mail saying that he had been granted a license.
On the phone from Kashmir, the adventurer is still clearly smarting. But he's also relieved to have his credentials and anxiously looking forward to his first season at the helm of his own boat. "Just being legitimately behind the wheel without anybody breathing down your neck, telling you that you can't be there on the Sound, which is the glory, the finest coastline I've ever seen—to be able to finally knife my way through that, through people telling you, telling all diabetics that they can't do this—to that end, it feels good to actually come out OK, amid those types of fears and remarks and rumors."
Duffy says he hopes he's made it a little easier for the next would-be boat captain with diabetes, in Alaska or elsewhere. He's also taking his experience as further inspiration to keep skiing, climbing, camping, surfing, mountain biking, and just generally pushing himself, as much as possible: "The learning point, for me, is that there's just no limit—diabetes is not a limit that's put upon you," says Duffy, who only recently led the harrowing night rescue of a young Russian skier who was stranded out of bounds at Gulmarg with a pair of broken legs. "I came across some bureaucratic hardship, but it's by no means a shackle to bar you from doing something you really want to. And there's a lot I still want to do."
If you think you may have been discriminated against because of your diabetes, call 1-800-342-2383 to get information and to ask to speak with a legal advocate.