6 Lessons From Cycling 10,000 Miles with Type 1 Diabetes
This is a special guest post from BioLite Ambassador Annalisa van den Bergh. Annalisa is the founder of Miles of Portraits, a magazine and film series about the people she meets while cycling around the world.
You may have caught me sneakily looking at my phone while you were talking and shrugged it off to the millennial generation’s famously short attention span. That same device on which I call, text, and scroll through Instagram also acts a vital organ –– an artificial pancreas system (“Loop”) that monitors my blood sugar and pumps insulin, a life-saving drug into my body at precise, calculated times. It’s one of the many ways 1.25 million Americans living with type 1 diabetes (T1D) are managing their disease. T1D is a chronic illness in which the pancreas produces no insulin, the hormone which breaks food into energy. 50 years ago, diabetes was a death sentence but today, technology makes living and thriving with T1D a hell of a lot easier.
Through this disease and a loss of my own, it’s been made crystal clear that life is short. So I, along with my friend Erik, started a business around what makes us the happiest –– riding our bicycles. Miles of Portraits captures stories about the people we meet as we ride our bicycles around the world. To date, we’ve cycled across America twice and ridden thousands of miles around Alaska and India powering our 'pancreases' with BioLite gear.
Here are a couple of lessons we’ve learned along the way:
1. Our Health Is Not a Guarantee - That's Why We're Out Here
I don’t think the phrase, “life is short” can be repeated enough. As someone who has lost her mother to leukemia, been diagnosed with T1D, and experienced a traumatic event on the road, I can tell you that the healthiest of people can be thrown nasty curveballs. It’s dark and it’s true. Because of this, I’ve learned to shrug off those who say what we’re doing is irresponsible and immature, that we should be sitting in offices, building up our savings accounts so that we can go fulfill that dream “someday.” “Someday” is not a guarantee.
Through my travels, I’ve learned just how amazing the human body is. It’s incredible what this body is capable of despite this disease. Being my own pancreas means getting a hands-on understanding and newfound appreciation of what a working pancreas does on it’s own –– and that’s just one organ of the body!
2. Less Really Is More
All that you see on this parking lot floor is everything we need to cycle thousands of miles, shoot films along the way, and manage our type 1 diabetes. Because two whole panniers are dedicated solely to our diabetes supplies, we are forced to pack less. (To learn more about Annalisa & Erik's necessities, check out this video run down). It makes you realize how little material things you need when traveling but also in life.
3. Be Open to Your T1D - You Never Know Where it Will Lead
I’ve come to be proud, not ashamed of the diabetes devices I wear. I prefer placing my Dexcom Continuous Glucose Monitor (CGM) and Omnipod Insulin Pump where people can see them –– on my arm or thigh rather than my stomach. You can stare at them but I would prefer that you just ask me what they are because they’re great conversation starters, educational prompts, and empowerment tools.
When I was riding my bicycle down the west coast with a CGM on my arm, James, a fellow cyclist saw it when he passed me and then slammed on the brakes: “You’re a Type 1 diabetic! ME TOO!”
He has raced across America with Team Type 1 and is the founder of the Diabetes Community Empowerment Project, an organization that empowers type 2 diabetics in the Pascua Yaqui Native American tribe to live healthier and happier lives through cycling. A few months later, I ended up flying to Tucson to spend time with and document the group’s story for Outdoor Research.
If I had been wearing my CGM on my stomach, none of that would have happened.
And if I hadn’t sought out community and joined that type 1 diabetes Meet-up group, I would have never met Erik. We would have never become close friends and cycled across America. We would have never rode 1,000 miles around India. And he would have never set me up on Loop –– the artificial pancreas system that’s our closest thing to a cure.
4. There is Sugar in Everything, Everywhere
One of the upsides of being your own pancreas and constantly monitoring what you’re eating is that you become a pretty skilled nutritionist. In many ways, I’m healthier because I live with this condition. Because I can see the consequences in real-time via the graph on my phone, I’ve become hyper aware of the amount of carbohydrates, fat, and sugar that I put into my body.
Items you may think are healthy like milk and juice are condensed with sugar –– so much so that we use them as medication to raise our blood sugars fast.
In Alaska a few years ago, soldiers gave us a couple MREs (Meals Ready-to-Eat), their typical grub. We prepared one a few days later and watched our blood sugars skyrocket from the ridiculous amount of sugar.
Cycling around the world has taught us that it doesn’t stop in America. In India, tea stalls line the highway offering sugar coated-everything, dunked in oil. When ordering coffee or chai, if we don’t wave our hand saying “no sugar” the default is three teaspoons of sugar –– in a four ounce cup.
5. Cycling Is The Cure
Whenever my blood sugar is rising, there are three things that bring it down –– insulin, water, and exercise. Cycling itself is a form of a medication for our high blood sugars and my favorite mood booster.
6. You Can't Be What You Can't See
Sitting around the dinner table at an Airbnb in Kerala, India I tell a German pharmacist that Erik and I are type 1 diabetics. She freezes and looks at me like it’s a death sentence: “And you’re out here, cycling?!”
There’s a general perception that those living with T1D are limited in their capabilities, that their sense for spontaneity has been taken from them, and that they should probably stay at home where it’s safe. This couldn’t be farther from the truth.
It’s true that we have to plan a lot more for our adventures than the typical person. Before even leaving the house to go to the grocery store, we check that we have all of our medical supplies, insulin, and battery packs for our phones. When packing for trips, we have to make sure we pack enough buffer in case we’re stuck at an airport and include enough backup syringes incase our insulin pumps malfunction. We’re always thinking ahead.
But it helps to live in the year 2020, too as technology eases the burden of this disease. Instead of constant finger pricks, our CGMs relay our blood sugar numbers every five minutes giving us tremendous peace of mind and freedom. Products like BioLite's off grid charging gear help us stay powered while away from wall ports. And when we’re on it, our phones connect us with previously unreachable communities who give us shoulders to lean on and ease in knowing that we’re not alone. It’s the golden age of being diabetic.
With preparation and support from the community, we can do whatever we set our minds to. One of the main reasons we’re out here is to spread that fact and prove them wrong. To be the role model on that magazine cover a newly-diagnosed girl finds who was just told that with this condition, she’ll “lose some of her spontaneity”. To be beacons of hope –– wearers of CGMs a little boy points at and says, “Look! They’re just like me!”
This Sept 18–20, Annalisa and Erik will be hosting a summit celebrating cyclists like them. The Cycling With Virtual Summit will tell the story of the bicycle as the ultimate vehicle for freedom by bringing together cyclists who have experienced different conditions and barriers to entry.
Get tickets: milesofportraits.com/cycling-with