“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 blog post about the experience of “finding out,” and explained this new situation as best I could, while trying to remain positive. Folks who were reading my blog at the time left very kind, supportive comments and their words soothed me, reminding me that this wasn’t “the beginning.” But it was the comment my brother left that cracked the concept of complications wide open for me, assuring me that there was life to be found after this diagnosis, too. And I’d better damn well seize it.
He wrote: “When we were little in stature, the snow would cover our backyard like a puffy comforter. We would go out into the backyard to build snow forts, to go sledding, and to eat a majority of it. We also had this thing where we would try to go as long as possible without damaging the ‘virgin’ snow, keeping to our trails and cordoned off zones, in an attempt to stave off ruin. We were a prepubescent Snow-Peace, minus the trademark galleon. It would only last for so long, before the snow would melt, no matter how hard we tried to preserve it with the no-walk, no-eat zones, but we knew there’d be more snow to cover up the previous damage we had done. You’ve done so well, for so very long. The way you think and operate, I see a snowscape for you for a very long time … just don’t forget to eat some snow once in a while.”
Diabetes isn’t just a balancing act for the people living with it, but the people living near it and caring for people with it. I never knew that my brother noticed what I did to take care of my diabetes, and I hadn’t thought ahead to how he would be impacted by any future issues. He wasn’t feeling the highs and lows, but he saw them and they left an imprint on him, too. Now that my brother has two children of his own, he’s mentioned that diabetes is on his radar as a parent, not just as a sibling. “I can’t help but think that it was the simple roll of the genetic dice. I keep tabs on my children’s weight and how many ounces of fluids they drink as opposed to how often they go to the bathroom,” he admitted, when I asked him about watching my niece and nephew for possible symptoms.
My sister agreed, confirming that my diabetes was an ever-present force, but something that lived on the periphery of our lives. “Diabetes didn’t really affect my childhood. There were food changes that Darrell and I had to adapt to, with a lot of the sugary foods we used to eat being cut out. Lucky Charms cereal was replaced by Cheerios. Regular lemonade was replaced by that Crystal Light stuff. We still ran around the house, though, and got into trouble. Picked on one another. Diabetes didn’t really change much, in that sense.”
Laura found herself in a similar situation as a sister, focusing on the hard-to-pinpoint effect that diabetes may have had on her life. “I don’t feel it’s had an effect, but maybe that’s how it’s had an effect. Maybe Jacquie wishes that it were more front and center for me, or that I would have been more helpful when we were younger. She was kind enough to participate in a Science Fair Project for me in the tenth grade. She was my only participant. I basically made her check her blood sugar, jump on the exercycle that was in our kitchen, and check her blood sugar again. I made it to the State Science Fair that year and was placed next to participants who were proposing cures for cancer and ways to reduce the spread of oil in the event of an oil spill. I was surprised because, to me, it seemed I was just presenting a day in the life of my sister and her blood sugar levels. It wasn’t until we started to spend more time together as adults—even if just on vacation—that I feel I’m really understanding what a burden she’s been carrying around.”
So what do you do, if you’re the sibling of a person with diabetes? It’s not your disease to manage, but it resides in a person about whom you care deeply, so it becomes yours, in a sense. Jackie found that she could make the biggest impact, and be the best supporter for her sister, simply by being there for Mollie. “The comfort of knowing they’re not alone and that there’s someone who’s got their back no matter what makes their struggles a little easier to bear. Sometimes that’s all anyone needs to help them get through the day. For someone with diabetes, it’s always one day at a time.”
Laura and my siblings agreed with Jackie, but also mentioned the need to be there for the moments of acute need, such as low blood sugars. “I don’t know if it’s best to make a big deal out of it or to try to make life seem more normal by not making a big deal out of it,” said Laura. “All I knew to do was to be there with a juice box, if needed.”
Darrell concurred. “Be ready to help if a low or high occurs, as I know your greatest fear is to have that happen alone, with no one to assist when your body and mind aren’t cooperating. Young siblings should know how to call 911 and/or parents if there are issues. Other than that, treat them no differently. There’s so much change and so many routines a person with diabetes has to do to work to be healthy, I’m sure they’d appreciate just being a brother or sister to them.”
He added, “That and look beneath the frozen snap peas for the M&Ms.”
