My little sister, Courtney, was only five when I was diagnosed, so as far as she is concerned, I’ve always had diabetes. “I was so little when I found out that you were diagnosed with diabetes. All I remember is Mom and Dad telling me that you were sick. I didn’t know what diabetes was until I was a little bit older, and could understand better. At that time, they told me that you had to check your blood sugar and then get a shot. I thought it was an allergy shot,” she said, remembering her own experiences as a kid with severe allergies. “But Mom said it different, that you were injecting a special medicine called ‘insulin.’”
Laura Watson was in fifth grade when her sister, Jacquie, was diagnosed. “I was in the fifth grade; Jacquie was in the seventh. It was fall. My mom was encouraging Jacquie to eat as much as possible because of recent and dramatic weight loss. I remember standing in the pharmacy section of the local grocery store with my mom to pick up ketone strips. Shortly thereafter, Jacquie was just kind of gone and I got updates through my parents. A lot of what I remember about those updates involved oranges and syringes and reassurances that Jacquie was going to be okay. That year in school I had all the same teachers Jacquie had two years before. It was their reaction to the news of the diagnosis that made me realize what a big deal it was.”
My brother did realize that diabetes was something “big,” but at the same time, it wasn’t a topic of much discussion. “We have only talked about things that impacted you negatively, like when there was a setback or an issue. I don’t believe we’ve ever had a long, positive conversation, where you got a new pump or you had a good checkup.”
Like Darrell, Laura’s memories of growing up alongside a sibling with diabetes weren’t rooted in deep discussions and serious chats about disease management and its influence. “I don’t remember it being an intrusive force, but I don’t think I filed it under ‘no big deal’ either. Rather, it always seemed to be something that Jacquie had under control, even if it meant a lot of work to keep it under control. I suppose I always assumed that my big sister knew what she was doing no matter what she was doing. Whether it was a decision to perm her hair, tight roll her jeans, or give herself an injection where and when, I applied the ‘big sister’ rule.
“I surely remember Jacquie having lows and highs and in some cases being exhausted the next day from a middle-of-the-night low,” added Laura, recalling these moments. “If there were cereal bowls and/or almost-empty Coke cans around when I got up in the morning, I could usually guess that Jacquie would be sleeping in.”
Darrell also had memories of my hypoglycemic aftermath, with only one clear memory of watching me in the midst of a low. “There were moments of fear, as I once was with you during a low and you told me that you saw car headlights coming out of your hands if you held them up to your face, like cars racing toward you on a dark highway. I had nothing to compare it to, so that was frightening.”
Funny thing is, I remember that symptom. When I was a little kid, my hypoglycemic experiences were very heady and confusing. I distinctly remember many lows where I’d see things, borderline hallucinations, and my fear of them was all-consuming. One time, while our babysitter Kim was watching my brother, sister, and me, I remember sitting in the hallway with my back against the wall, screaming about those cars coming out of my hands. I remember the headlights zooming toward me, and a panicky feeling that I would be hit by these cars. It was irrational, but my brain was shifting the glucose reserves around, preserving the parts of my brain that were necessary for autonomic processes, such as breathing and the beating of my heart. Rationale fell by the wayside as my body tried to make sense without enough glucose in my cells.
As bizarre as this feeling was to experience, I at least had an idea of when it was starting, and felt the relief when it began to end. My brother and sister were left just to watch and wonder what the hell was happening.
“I think the strongest impact that diabetes has had on you is that you became very aware of your own mortality at a very, very early age. Here was something that had, and always will have, the potential of taking years from you, or your life itself if it’s not managed properly. It’s an everyday cumulative tightrope,” said Darrell, when asked about how diabetes has affected our relationship. “Some people would take that and internalize it, where you took it and swung the momentum into a force of motivation. Your siblings know how you think, being the closest thing to a ‘twin,’ and even though I know you are absolutely terrified at times, you’ll still face it head on.”
I also spoke with Jackie Singer, the twin sister of Mollie Singer, who lives with type 1 diabetes. “When Mollie was diagnosed, it was as if I was diagnosed, and our whole family was diagnosed,” she said. “We really did live, breathe, and eat as a family and that meant doing what Mollie could do when Mollie could do it. I never really worried about becoming diabetic, but there were many times when I wish I was, because then she wouldn’t have to go through what she had to go through by herself.
“Mollie and I were inseparable before she was diagnosed and we are the same way now, if not closer. When we were in school, we had all the same classes from kindergarten through college. I was as knowledgeable as her about diabetes, so I was always by her side in case of an emergency. When we were little, we always shared a bedroom and there were so many nights I would stay awake to make sure she was okay. It was terrifying to think that one morning I would wake up and she wouldn’t. I became her protector, always aware of changes in her breathing or sleeping, setting alarms to remind her to check her blood sugar at the appropriate time, grabbing juice and a snack for her when she couldn’t, and on two occasions before we were ten years old, setting up the glucagon kit and calling 911 while our mom held Mollie in her arms after she experienced an episode with dangerously low blood sugar levels.”
Diabetes is a disease that affects the whole family. It’s not just the person who is receiving the injections or pump infusion sets or finger pricks who’s carrying the full weight of diabetes. I don’t know if my brother and sister understood what diabetes meant when I was first diagnosed and if any of us understood just how big the words without a cure really were. But I know that we learned about diabetes as a family, and dealt with it the same way.
There is that dance that occurs between my brother and sister and me, that weird discussion that never really takes place, where siblings acknowledge that there is something serious in play, but no one wants to talk about it so plainly. We didn’t sit around the breakfast table and run commentary on the state of my fasting blood sugars, but diabetes was always present and always somewhere on the table, literally and figuratively. If it wasn’t my mother telling me to eat all of my breakfast because I already took insulin for it, it was her reminding me to grab my lunch bag.
There was a time—only once—when I felt angry. Jealous of my healthy brother and sister and the fact that their days didn’t start and end with needles. I was about 14 years old and pouring out my angst into a fabric-bound journal, scribbling in it madly with a ball point pen.
“They don’t have to worry. I’m jealous of that. But I’m worried. I’m worried about what my body will be like in like two decades, after all that time with diabetes.”
I thought I was alone in that worry. It wasn’t until I was deeply immersed in sharing my diabetes life with the Internet that I truly grasped how much my older brother watched and understood.
In May 2005, my first evidence of diabetic eye disease started to show in the form of cotton wool spots. Noticed during my yearly dilated eye exam, the doctor saw a few spots of swelling of the surface layer of the retina, when a part of the eye isn’t provided with enough oxygen due to a damaged blood vessel. On the photos of my retina, it looked like puffy spider webs had taken up residence in my eyes.
Trying to acknowledge and understand this first diabetes-related complication, I wrote a