National Disability Employment Awareness Month: How Type 1 Diabetes Recalibrated an Interactive Designer’s Lifestyle
In 1953, New Zealand mountain climber Edmund Hillary and Sherpa Tenzing Norgay became the first known people to reach the peak of Mount Everest. In 2006, 53 years later, American mountain climber Will Cross became the first type 1 diabetic to reach that same summit.
I know this because it was one of the first things I looked up after being diagnosed with type 1 diabetes in 2011 while on Christmas Break as a junior at Sam Houston State University.
The diagnosis came after I noticed that my clothes seemed to be fitting extra loosely, I was drinking multiple gallons of water per day, and I kept falling asleep.
My sister, a nurse and type 1 diabetic herself, suggested she check my blood sugar, so she got out her glucose meter and pricked my finger. After a few seconds it showed, “Too high to read.” That couldn’t be right, we thought, so we tried again. “Too high to read,” the meter read again.
We spent Christmas Eve at the emergency room that year, trying to make sense of what was happening to me.
I had long dreamt of traveling, camping, rock climbing, and spending my time outside. I grew up canoeing the San Jacinto River and reading articles from Outside Magazine. I went to college on a volleyball scholarship and later walked on to the track team.
It wasn’t until I was diagnosed with type 1 diabetes that I realized the fragility of life as I knew it and the challenges of doing the things I loved.
There are many forms of diabetes but type 1 generally means that your pancreas no longer produces insulin. Blood sugar is primarily affected by what you eat, but exercise and hormones also affect it. The cause of my autoimmune disease is unknown but its effect on the body is severe and complex, influencing everything from my eyesight to how I heal from sick-ness and how my kidneys function.
The most important adjustment after my diagnosis was the discomfort of giving myself insulin shots in public and a new dependency on temperature-sensitive medication. Social events and the environment around me became potentially life-threatening, and the way my body relates to people and the environment changed forever. I had to learn how to defend myself against the outdoors, playing sports, and the Texas heat – but I have since learned how to navigate those barriers.
To keep the amount of sugar in my blood stable, I give myself six to eight shots a day and keep a juice box in my purse in case my blood sugar goes too low. I usually weigh or calculate the carbs in my food, but after many years I’ve basically become a walking MyFitnessPal when it comes to quickly counting carbs in common foods. I check my blood sugar through a continuous glucose monitor (CGM), a device I wear on my arm that constantly tests my blood and can be scanned with my phone.
When I started writing this column, my initial thoughts were that design can’t change the day-to-day lifestyle for a type 1 diabetic like me, because it is a self-treated disease that isn’t always made obvious to others. After more reflection, I realize that though disabilities aren’t always visible, our world should still strive to accommodate our many differences.
The current pandemic has highlighted that we all have different needs to thrive in our own ways. Changing policies and reimagining how society functions can make space for the lives of the non-normative. Earlier this year, HKS announced it would transition to a permanent flexible work policy, giving employees flexibility in how they set up their work day to accommodate their many responsibilities. The way my work environment is designed now – a more flexible schedule, time to cook meals at home, and time for exercise – has had a dramatic effect on my health. It allows me to work out at lunch, go on walks throughout the day, freely give myself shots, and more easily calculate carbs in the food I’m eating.
In August, I was able to take a break from work altogether and go on an 8-day kayaking trip circumnavigating the Spanish island of Menorca. My husband and I camped with a tarp and ground cloth on the beaches and kayaked 5-8 hours a day.
To survive the 35 Celsius heat, I kept my insulin in the cockpit of the kayak against the cold Mediterranean water. I kept gummy bears in the front pocket of my hiking shirt in case my blood sugar went too low and I had a portable power bank so my phone could stay charged to scan my glucose monitor.
I recently went to the doctor and we found that my blood sugar numbers had improved by 10 percent since June, around the time my HKS flexible work schedule began. This checkup gave me a significant peace of mind as I often fear the repercussions my disease will have on me with time. Finding a rhythm where my body works with me, and not against me, is something I’ve been fighting since I was diagnosed. To be able to pursue a healthy life, do the things I love, and take care of myself means that my pursuit of happiness is a little bit easier.
Will Cross’ Mount Everest climb represented the incredible feats that many people with disabilities have accomplished in a world that was not designed for them. Still, there are millions of people who live an unseen life trying to navigate the intersection of their disability and the dreams they have.
I’m not the first type 1 diabetic who has found ways to pursue their dreams but I have spent a lot of time embarrassed by a disease I can’t control – embarrassed to give myself a shot, embarrassed to start eating a snack during a meeting.
I used to be afraid of someone seeing my glucose monitor on my arm or feeling awkward when someone made a joke about eating sweets making them diabetic (it doesn’t). I’ve since learned to celebrate my differences and be thankful for my body and the science that helps me live a good life. Making peace with my own body is how I hope to carve out a safe space for others with similar disabilities.