My Brother Beat the Odds With Type 1 – Now It’s My Turn
It wasn’t me
Most stories about type 1 diabetes begin with the diagnosis—the origin story if you will. Usually, people outline lots of weight loss, being continually thirsty, super tired and of course always having to urinate! My first introduction to diabetes didn’t see this happening to me. Instead, in 1988, I saw this happen to my 11-year-old brother. Of course, like most of the people surrounding a newly-diagnosed person with type 1, I had no idea what he was going through or any understanding of how diabetes worked. I knew he had to take shots and continually check his blood. He started having regular snacks and I learned about “free foods,” but to my 14-year-old self, he was just better—normal—again.
While there were a few weird events over the next eight years where my brother required help (hypoglycemic episodes), I didn’t understand how type 1 diabetes (T1D) was any problem for him. Any achievements I made in football, wrestling, or track (as a non-diabetic), he surpassed! His accolades and schoolwork were always beyond mine, so was there even anything holding him back?
Fast forward another two years, I am fresh out of college, early in my career, and running around with friends enjoying my early twenties! It was the beginning of 1998, I started losing weight. I was continually thirsty. I would struggle to keep my eyes open after lunch. And of course, I was using the bathroom constantly. I knew what was happening, even if I needed a doctor to tell me for certain.
The thing was, seeing my brother and knowing that he was able to do everything I did (only better), I never even considered that T1D would physically limit me. But—what I learned was that having something no one understands and no one can relate to is isolating. I was one of only two people with diabetes I knew, and an adult, out on my own.
A whole new world
I spent the next 18 years or so fighting a private battle with myself. Accepting that I had a lifelong disease, but isolating myself because I knew no one could understand the daily issues that I wrestle with (ask my wife, she’ll testify to how difficult I made it for those near me). You see, I am in charge of my own life and death on a daily basis, with a constant reminder that if I don’t exercise good control, the long-term complications are inevitable. Most people decide donut or muffin. I get to throw in there: how much insulin? And is that not enough (neuropathy, glaucoma, etc) or is it too much (hypoglycemia, coma)?
Enter the Diabetes Online Community, Type One Run and Beyond Type 1. Suddenly, there were people, real people, who when I said, “Oh man, my blood sugar is so high,” they knew *exactly* what I meant. They knew how I felt, how that affected my current mood, my day, my outlook on life! When I explained how my blood sugar dropped so bad during my first triathlon, I got feedback on how to manage that, on how to better prepare. It seems simple, but when you find people that can so readily relate to your struggle, it is life-changing. Further, an unexpected benefit of becoming part of a community is the shared tech knowledge—learning about new devices and ways to use them to better your life!
Dexcom is a continuous glucose monitor (CGM) I started using in the fall of 2017. It took me from an A1c in the high 7s/8s, to 6.4 in three months. Connecting with others who had used it, and getting feedback on the newest updates facilitated my move to the new and improved G6 in the fall of 2018. Now I see a current blood sugar reading on my watch every five minutes! And insulin pumping has advanced too, thanks to efforts through the online community. Tandem (who makes my insulin pump) is set to release a hybrid closed-loop system that stops and starts insulin based on the readings from the Dexcom G6! The mental stress relief alone is liberating!
So today, with a newfound group of cohorts and a newfound desire to contribute to this community, I’ve elevated my running. It helps my diabetes control, it connects me with other T1Ds, and it makes me happy. And I’ve enhanced my involvement in the DOC! If I could find help here, I can offer the same to others. In 2018, I ran my first half marathon. A year later I ran my first full marathon. I’ve connected with other T1Ds for trail races, and now am super excited to represent Beyond Type Run in the 2019 NYC marathon! Myself and 29 others who have to fight the same day-to-day challenges will band together to represent how community makes us all stronger. Thank you Beyond Type 1 for making this happen, and thank you to all the support out there in the diabetes community!
Kyle Severson is raising money for Beyond Type 1 through Beyond Type Run—his fundraising will make a real difference in the lives of those living with T1D.