Four
I don’t have a clear recollection of life immediately after diagnosis, but I know back in 1986, food choices ruled the roosts of diabetes households. Once the vials of insulin moved into our refrigerator’s butter compartment, gone were the Twinkies and Ring Dings and Yodels (and other snack foods comprised of a half gram of actual nutrients and then a whole pile of rubbish). Our eating patterns changed as a family, and Diet Pepsi and food scales replaced the snack cupboard of days gone by. My mother hid the ice cream sandwiches in the hollowed-out box of broccoli in the freezer. She had packages of E.L. Fudge cookies hidden between the sweaters stacked in her closet. She was a food-hoarding squirrel, with delicious treats in every obscure corner.
I viewed this as a clever approach that removed a lot of temptation (and also presented some very furtive treasure hunts with tasty rewards), and one that helped to keep me safe and healthy. But for my brother and sister, both with perfectly capable pancreases, the lifestyle change wasn’t necessary. Didn’t they get to have snacks, still? (My brother confirmed that he, too, was searching for the “good snacks” after my diagnosis. “I had to look in the freezer for cookies and above the broom closet for the special sugary cereals,” he said.)
What I failed to realize then is that my diabetes didn’t have to be my siblings’ diabetes. There was so much about their lives as the siblings of a child with diabetes that I couldn’t even wrap my head around. I didn’t know what it was like to have your sister come home from the hospital, now playing host to something no one could see, and garner so much attention (for better or for worse). I’ve talked to some siblings of kids with diabetes and heard about the guilt. “I felt bad for wishing I was sick, too, because I was jealous of the attention.” Or the worry. “Was I going to get diabetes, too?” Or the anger. “I am sick of her diabetes being the sole focus of our family.” Or, just plain fear. “Will diabetes hurt my sibling?”
My brother, Darrell, was 13 when I was diagnosed with diabetes, and old enough to remember some of the details that I can’t recall. “I remember Dr. L [our pediatrician] coming out of his office, the one with the patterned wallpaper that had giraffes and monkeys on it, and he was holding a little plastic cup with what was your urine sample. We had both gone for checkups on the same day. He told Mom that he wanted to do some additional testing for you, so Mom dropped me off at soccer practice and proceeded to take you somewhere for tests.
“I remember being picked up from soccer practice and leaning through the open passenger-side window. You were in the back, dressed in a little white knit pom-pom hat and looking rather dour. You looked very small to me. I believe it was there that Mom told me what the verdict was, before I even got into the car. Seeing what type of memory it has indelibly put on my mind, whether it’s truly accurate or embellished by the passing of time, I knew it was something major. I knew it was a ‘difficult time,’ and it burned right in.”
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
