being handed my mortality at such a young age. “Hey, you know this can kill you, right? So take care of yourself” was something that doctors and relatives alike would say to me, making me acutely aware of how fragile life can be. While many of my friends went through a period of invincibility, I never hit stride with that mentality. Instead, I had a heightened awareness of how vulnerable my health was and I worked hard to maintain the health baseline that seemed to come so naturally for my friends who didn’t have health concerns.
I met Abby Bayer through my childhood diabetes camp, Clara Barton Camp (affectionately known as CBC). The entire camp was designed so that all campers, staffers, and most of the faculty were living with type 1 diabetes themselves. Diagnosed at the age of 13, Abby was the lead charge nurse at CBC and is currently a registered nurse in an endocrinologist’s office, working toward her goal of becoming a certified diabetes educator (CDE). “Having diabetes shaped my life goals in a huge way. After working at a camp specifically for kids with type 1 diabetes, I realized that I wanted to teach children about diabetes, forever, as my job. It was my passion. I went to nursing school with the intention of becoming a CDE and am currently working toward that goal. Being around kids who are growing up with diabetes presents a great opportunity for adults who have gone through that experience to help them with the hurdles they will encounter. That’s what I love to do.”
Despite being driven, career-wise, by her personal experiences with diabetes, diabetes does not stand to define Abby. “I tell everyone that, whether they have diabetes or a family member does, or even just a friend, we are people, first and foremost. I am Abby. I’m a nurse, I love yoga, and I have diabetes. It’s the last detail about me, as a person, but among the most important. Diabetes is just part of my life.”
Similarly, fellow diabetes blogger Kim Vlasnik finds diabetes as a common outlet for her passions and wants to connect and give back. Like me, her vehicle became the Internet. “Going online to find other adults living with type 1 ended up being one of the best things I’ve ever done for my health. The connections and camaraderie I’ve found in the diabetes online community help me feel less alone and isolated, and more like I’m actually a member of a really exclusive club that no one ever wants to join. Before that, diabetes was this thing, this burden I just kept to myself. Aside from a couple years of diabetes summer camp as a kid, I didn’t really have a lot of contact with other kids with type 1.”
And that’s it—that’s totally it for me. Connecting with other people who understand this disease makes it less of a burden and less chaotic. The swirl of type 1 diabetes can go from manageable to maelstrom in a matter of minutes, and keeping things predictable in efforts to be proactive can be challenging. Finding kindred spirits and embracing the “me, too!” aspect of interacting with other people with diabetes are what keep my psychosocial health from spinning out of control, helping me accept the reality of life with diabetes, whatever it may be that day. And, keeping tabs on my emotional health helps me keep a tighter, more active rein on my physical health. For me, that is where my sense of balance exists. It’s the sweet spot. (Stop groaning—I’m just getting started with these horrible diabetes puns. You just wait until we get to the chapter on making excessively sweet love.)
Briley Boisvert, diagnosed at the age of two, finds that sense of acceptance to be the root of what keeps her balanced. “Diabetes can never be the sole focus in a person’s life, whether you are the person with diabetes or the spouse, parent, or child of someone with diabetes. Life is about living, and living it to the fullest. Fill your time with a variety of things! For me, I choose family, friends, skiing, running, tennis, reading, laughing with kids, and more. Every person is different and every person needs more than one focus. The biggest thing to understand is that all of those other things can be done, but diabetes will be there also. Once you accept that, it’s much easier to live.”
In my life, the balance I sought as a child is different from what I seek as an adult. When I was diagnosed with type 1 diabetes, the person in charge of my health wasn’t me. It was the job of my parents. Now, for better or for worse, I am the one in charge, and I need to own all aspects of diabetes.
I’m proud and feel accomplished when I take a step forward, and equally embarrassed and critical of myself when I take a step backward. I think my biggest step forward has been sharing my story with the world through the Internet, chronicling both the forward and backward steps. Being able to share in a medium that allows people who understand and live with this condition in some capacity or another to comment and create a conversation has helped me to see that I’m not alone. This new, but no longer lonely, normal is something I share with so many others who survive, and inspire me to thrive, with diabetes. And in this, my first book, I want to share my personal experiences and the experiences of so many others who balance life and diabetes every day.
“At the time when I became sure that something was wrong, I was in Wyoming skiing. I had been losing weight and getting progressively weaker. My vision was often blurry, and I had an insatiable thirst, with a commensurate need to urinate. I remember a particular day when I was lapping a run that had a bathroom and a small snack shack near the bottom of the chair lift. I would use the bathroom, guzzle a Gatorade®, then ride the lift back up. By the time I reached the top of the lift, my mouth would be so dry that it would be sticking together and I would have to pee again. I would race down the hill and repeat the process,” said Christopher Angell, diagnosed with type 1 diabetes at the age of 30. He is describing some of the classic symptoms of diabetes—excessive thirst and excessive urination.
“My appetite was also getting progressively more heroic/disturbing. I would frequently eat five or six full meals per day, but never feel satisfied for long,” he explained. “One of the final straws came when I ate an entire package of hot-dogs.” Pause. “For breakfast.”
(For the record, mass hotdog consumption has yet to be added to the list of classic symptoms of diabetes.)
Type 1 diabetes isn’t diagnosed only in small children. Although I was diagnosed as a child, with very little recollection of life before diabetes, many others are diagnosed later in life, well into their established adulthood. Insulin vials in the fridge? Daily injections? Blood sugar fluctuations? These have always been a part of my life. All of my memories, save for a precious few, are rooted in the “after.” But I’ve often thought about what it must be like to be handed such a huge diagnosis at a time when you’re already an established adult, with a crafted sense of self. What’s it like to see the line in the sand, marking life before diabetes and then this new life after diagnosis? What’s it like to remember and to have to move forward as a person with diabetes?
Christopher and I spoke about the definitive “before” and “after” of diabetes, as integrating diabetes into his adult life was a new and prickly beast. Literally. He described to me the very first time he gave himself an insulin injection.
“I thought that having to give myself a shot was major. I couldn’t even really conceive of it. As a perfect illustration of just how poorly I understood what kind of life lay ahead of me, the first night I gave myself my Lantus® injection, I actually set up a camera to film it. I very methodically took out the pen, opened a fresh needle, and screwed it on. I dialed up two units and pushed them out to make sure the pen was primed. Then I lifted my shirt, chose just the right spot, and wiped it thoroughly with an alcohol swab. I dialed up 15 units, and, trying to be brave but also make it clear to the camera just HOW BIG A DEAL this was, pushed the needle through my skin. I pressed the button all the way in, leaving it there for 15 seconds to get every precious drop.
I don’t have the video. I had actually paused it
