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Chapter One

Making Sense of the New Normal

When I was two years old, I tripped and fell, smashing my nose against the stone hearth that surrounded our fireplace. The blood! My little face! My parents freaking out! There were exclamation points everywhere, and, to this day, my nose still has a bit of a bump to it where the cartilage hit the stone.

I was so little that the memory is lost forever to me, but my parents remember it distinctly. Like so much of my early childhood—the only years I have had without type 1 diabetes—these memories are caught in snapshots and half-fictionalized stories we repeat around the dinner table at holidays.

However, I do remember wetting the bed before my diagnosis. I was six years old and frustrated by my perceived lack of self-control. “Mom, I can’t stop!” was my lament, and she shared my frustration because she couldn’t help me stop. I have a very clear memory of walking downstairs to the living room where my parents were watching television and throwing my “lovey blanket” into the middle of the floor.

“I can’t stop peeing in my bed! But I can stop sucking my thumb,” I said, jutting my chin out and making what has evolved into my “stubborn fool” face. “I’m DONE.” (My parents remind me of this story every time I get my mind set on doing something new and frustratingly challenging. “You always do what you can do, and what you can’t control, you still try to control,” they say. I’m still not sure if this is a compliment.)

After the purchase of a system, worn in my underpants, that detected the presence of urine by announcing it with an alarm that pierced through the quiet night of our home and vaulted me from my bed, the nighttime accidents stopped almost entirely. But I was still up once or twice a night using the bathroom.

It was months later, during a before-school physical that included the standard pee-in-the-cup moment that our pediatrician, Dr. L, came out with a urine sample in his hand. “Whose pee is this?” he asked, pointing to the cup with the bright blue lid.

“That’s Kerri’s,” my mom said, assigning the sample as mine and not my brother’s.

“It’s a little high in sugar. She needs to go to the hospital for blood work this afternoon,” he indicated.

According to my mom, who remembers this day clearly while my memory is cluttered more with the clowns on the bathroom wallpaper in the office, there wasn’t much explanation about the test or what it was for. The blood draw for a seven year old felt more acute and more dramatic than the vague “high in sugar” diagnosis it was confirming.

But then came the phone call and a conversation between my mom and the doctor. He told her that my blood sugar was 250 mg/dL and that I had “juvenile diabetes.” In a controlled panic, my mother was calling my father and saying that word again—diabetes—and making arrangements to take me to Rhode Island Hospital the next day.

When I talked about my diagnosis with my mother over cups of tea years later, I asked her about how she felt upon receiving that call and being handed my diagnosis. She shared, “I wasn’t scared. I wasn’t panicked. I knew that [our extended family friend] Eleanor’s son, Jim, had diabetes, but I didn’t know what that meant or what it entailed. It wasn’t me being tough, but more that I didn’t know what we were getting in to. I just thought, ‘Okay, let’s go deal with this, whatever this is.’”

She continued, “We were sent home with a urine testing kit—do you remember those test tubes and the little color-changing tabs we’d drop in?”

I 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 level of responsibility seems to come in tandem with the diagnosis of diabetes when you’re young. I felt this myself, 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.