Sean Busby

My T1D Story

My name is Sean Busby and I’m a professional backcountry snowboarder living with lupus (SLE), rheumatoid arthritis, epilepsy, and type 1 diabetes (T1D). I live 63 miles north of the arctic circle in the remote Brooks Range of Alaska.

In 2004, at the peak of my competitive snowboarding career, I was diagnosed with T1D — my first autoimmune disease. On some of my darkest days, I was able to read stories of kids with T1D that inspired me to continue to pursue my dreams. I felt a strong desire to give back to those kids for giving me the courage I needed, so I started offering snowboard camps for kids living with type 1 diabetes alongside local children’s hospitals in California and organizations in Idaho and Wisconsin.

In 2014, I achieved my goal of backcountry snowboarding remote mountain ranges on all 7 continents with T1D,

including Antarctica, Kyrgyzstan, Morocco, Patagonia, arctic Norway, Sweden, Finland, China, all around eastern Europe, Tasmania and New Zealand. It was a lofty goal that took me seven years to accomplish — and after taking those final turns in the High Atlas Mountains of Morocco with Mollie at my side, we started to consider what might be next for our lives.

While still taking annual trips to our favorite place to ski/ride in Arctic Norway, we poured our energy into sustainability and off-grid living at our homestead in Montana. We built ourselves a yurt and learned quickly how rewarding it was to generate your own utilities, such as firewood for heat, solar for power, and hauling jugs of water from our well nearby. Our property was snowmachine-access only in the winter months, and we loved the challenges of the lifestyle, as well as the peace and quiet we experienced living in the round in themiddle of the woods.

In 2016 we were featured on a Discovery Channel show called “Building Off Grid,” which followed our journey of building our first cabin on that same property, just down the trail from the yurt. The construction days were long, and Mollie and I experienced a steep learning curve as we constantly tacked new experiences like framing, roofing, plumbing, electrical, and more. At the peak of all this excitement, my body seemed to shut down — and I received my second autoimmune disease diagnosis of Lupus (SLE), which shook me to my core.

I have always known that mountains, snowboarding, and community provide healing for me. I like to say they’re next best medicine to the lifesaving medicines I rely on. Faced with a life with Lupus, and armed with two years of off-grid experience, I knew I didn’t want to wait any longer to really go for what I’d always wanted to do in life… and Alaska was calling.

It didn’t take Mollie and I long to find an off-grid property on Alaska’s Kenai Peninsula that we fell in love with. In June of 2017, we started the process of moving our life from Northwest Montana. Our cabin there was 3 miles off the road system, so 4-wheeler or snowmachine access only. The cabin was nestled on a steep hillside that was covered with bright pink try fundraised to come to the arctic for a week for the adventure of a lifetime! This teen expedition is ROI’s annual summer program called BASECAMP, and serves as a pivotal experience for teens as they take their T1D to a remote corner of the globe and test what’s possible — while also serving as a fundraiser for the nonprofit, helping to fund the 1-day camps we’ve become known for around the world.

Whether teens with T1D, or folks who want to cross the Northern Lights off their bucket list, our guests here at Arctic Hive are supported as they challenge themselves to survive in this untouched, remote ecosystem. They leave with life-changing memories, and a newfound appreciation for the arctic, the changing landscape due to a changing climate. They better understand the nuances of wildlife management and resource extraction issues facing Alaska. Ultimately, guests leave here as better stewards of the planet — just as we try to be in our own lives on this off-grid journey.

Despite receiving two more autoimmune diagnoses since we’ve moved to the arctic, I’ve never felt more content with my life and where we live than I do today. The mountains, snowboarding, and being surrounded by Mollie and our family of sled dogs have provided healing for me that I never dreamed possible.

Sure, I have my fair share of hard days — but the hard work we have to do for survival puts the hard days with chronic disease into perspective. The physicality of this life, like hauling water from the river, building houses, securing firewood, and caring for a dog team has been medicine that keeps my body moving and my mind focused.

I may never experience a cure for my autoimmune diseases in my lifetime, but I have no doubt that it’s these mountains of the remote Brooks Range that have given me purpose, passion, and effectively put my life back in my own hands. For that, I will be forever grateful.