did remember those. The test tubes would turn orange and get hot if my blood sugar was too high.
“When the tubes stayed cool and the color was closer to blue, it meant ‘good job!’ and that your urine didn’t contain too much sugar. The thing is, home glucose meters existed when you were diagnosed, but we weren’t given one. And, for the first month, I was okay with the urine tests, because that’s all I could handle at the time. It was so much to take in and so much to learn that adding in all the numbers was more than I could adjust to.
“We eventually got a meter when we went to Joslin Diabetes Center for the first time about five weeks after you were diagnosed. For that first month, I had been adjusting to the needles and the insulin and the sliding scale of insulin doses, but I was starting to get frustrated at the imperfect science of urine testing. I was ready for more information, and that’s when we went to Boston to see a pediatric endocrinologist.”
When pressed to recall memories of my diagnosis, I have a hard time coming up with much. Most of my young life was a flurry of events and memories that I don’t remember diabetes being a part of, even though I know it was there the whole time. Growing up, I didn’t have a “diabetes community” to speak of, and for many years, my family and I dealt with diabetes on our own.
When my then-boyfriend/now-husband and I started dating, I mentioned to him that I didn’t know anyone else who was living with diabetes. I had found plenty of people who died from it and grim accounts as to how and why by searching online, though.
“Have you ever considered blogging?” he asked, innocently. That very question is how I ended up sharing personal details about my chronic illness and its emotional and physical influence on my life on the Internet for the world to read.
In May of 2005, at the encouragement of my boyfriend, I started a blog in hopes of connecting with other adults who were living with type 1 diabetes and who were actually living. I knew there were complications that could arise as a result of this disease and I knew the day-to-day was challenging in its own way, but I was in search of people who were doing normal things—dating, going on job interviews, having fun—with type 1 diabetes as just part of the bigger equation.
A diabetes diagnosis is only the first of so many “new normals.” As a kid, my parents and I both needed to learn how to pinch hit for my busted pancreas, making sense of the new tools and new medications introduced into my young life. The point of all that excellent care and attention was to help me grow up and become an adult with a life of my own. Which, eerily enough, actually happened.
Now that I am an adult, I find a new version of “normal” to adjust to every few years. At first, I went to college and needed to find balance in being almost solely responsible for my own care, making sure my medical needs were met without my parents looking over my shoulder. Then, it became the “new normal” of life in my own apartment, without roommates, balancing blood sugar checks against nights out with my friends and keeping up with the constantly shifting sands of medical insurance and a “real job.” Now, as an adult with a family, I’m trying to figure out how to keep my health afloat in the flow of life as a writer, a wife, and the mother of a little girl.
For the first few weeks as I dove into the world of blogging and started actively sharing my health and my emotional ties to diabetes with the Internet, I thought my needs were unique. I thought I might be the only person with diabetes (PWD) who was struggling to make sense of this disease, but I was also gripped by this strange, unrelenting hunger to connect with a community that understood, intrinsically, what I was going through each day.
“Do other diabetics think about this stuff?” I asked out loud to my boyfriend. He shrugged his shoulders, unsure. “Am I a weirdo for wanting to find other people who don’t make their own insulin?”
Then something life-changing happened … I discovered my peer group online. I saw that I wasn’t the exception. Especially in the space where people were actively disclosing their diabetes in discussion forums and blogs, I saw that I was the norm. You see, diabetes, even when classified as “no big deal,” plays a role in shaping who we are and who we become. As a disease, it doesn’t get to take credit for our successes, but it may be a driving force in getting us there.
Scott Johnson was one of the first writers I found online who was writing about a real life with diabetes. Similar to me, he didn’t remember much about his diagnosis and he was looking to share his story in hopes of finding others like him. “I was only five years old when I was diagnosed, so every memory about that time is very vague. I remember watching an old war movie on TV, and the nurse coming in to give me Nilla Wafers as a snack. But that’s kind of it.
But as I grew up, I realized it was hard to live with diabetes. And for those who ask if it makes a difference because I don’t remember a ‘before,’ I can say that I’m aware of what life would be like without diabetes. I see all these other people not doing what I’m required to do. I see the extra stuff. But it makes me feel strong because I feel like I’m kicking butt at life most of the time, and I’m doing it all with diabetes. Knowing that made me want to share my story, to prove that this can be done.”
What makes this happen? Instinctively, you’d think there isn’t a shred of balance to be found in focusing anything at all on a disease. Shouldn’t a person living with a chronic illness ignore it at all costs, save for the necessary medical management required to stay alive? Doesn’t focusing on it too much make it overwhelming—a dominating factor? What grace and balance can be achieved from bringing diabetes into the “other” parts of your life—your hobbies, your job, or even the friendships you forge?
You’d be surprised. I am constantly surprised.
Clearly, not everyone wants to have diabetes bleed out (terrible pun, but I’m going with it) into other aspects of their lives, and I have tremendous respect for people who achieve great things that have nothing to do with diabetes. But I do have a special level of respect and appreciation for people who take this disease and make it a bigger part of their life, as a way of achieving peace, understanding, and, hopefully, balance. There are so many examples of people who have immersed themselves in the diabetes community, both in an offline sense and through the magic of the Internet, and give back in a way that helps others find that same peace, understanding, and balance.
Ryan Noonan was probably the first other kid with diabetes I ever encountered because we went to the same school system and his older brother was in my class. Diagnosed at the age of nine, Ryan struggled to find balance with diabetes for much of his life, dealing with his disease by ignoring it as much as he could while growing up. “It is very easy to say but a lot tougher to do—don’t worry about what other people think. I worried about what everyone thought or said for far too long and it did a lot of damage to me as a person, but mostly as a diabetic. I was so worried about making everyone else happy that I wasn’t happy myself. Do your own thing—you know what is right and what is wrong. Diabetes has made me a much stronger person, a person who will take control of a situation if needed. And work-wise, I’ve had the confidence to set up meetings with people I wouldn’t have had the guts to say hi to in person before.
But the biggest step I had to take is one toward taking total responsibility for my diabetes. In the past, I would say I couldn’t eat something or participate in a certain activity because I had diabetes. I found that as my diabetes control improved, I felt like I could do more, in every aspect of my life. If, and when, you need help on your way, please trust me that you need to ask for that help. But at the end of the day, if your blood sugar is in-range, then you’re doing something right.”
When it comes to diabetes management, “doing the right thing” covers a whole slate of actions and emotions. An elevated
