[Originally published, in a different form, in Diabetes Mine, April 26, 2014].
If you’re a parent with Type 1 diabetes, the challenges created by your malfunctioning pancreas provide ready-made tools to teach your kids valuable lessons. Yes, this disease is a burden on you and your family, it can be a cruel beast, but it also gives you a chance to be a role model.
As Kerri Sparling points out in Balancing Diabetes, T1D comes “with a certain level of perspective, as a parent, and one that offers your child a special perspective all their own.” Several parents with diabetes told her they hope the disease will have a positive influence on their kids, teaching them healthy habits and empathy, among other things.
I share those hopes for my own daughter, who is 26, and whose pancreas works just fine. But I never asked her about the impact of my T1D until recently. Our conversation was prompted by an interview I did with Michael Schaffer and his mother Patricia, who has had Type 1 diabetes for…77 years (!) She will soon receive a 75-year medal from the Joslin Diabetes Center.
By itself, Ms. Schaffer’s story is inspiring. Growing up in a time when syringes were sharpened on whetstones and sterilized in boiling water, it required extraordinary determination for her to live an ordinary life. She became an active, energetic housewife and mother in the Washington, DC area, raised five kids, tirelessly led Girl Scout troops, volunteered in her local church. She watched her diet carefully, decade after decade after decade, and didn’t let periodic hypoglycemia slow her down.
But it was the lessons she imparted to her children that stood out in my mind. For one thing, Michael says, “my sister and I joke about how we still expect to have the right portions on our plates, to always have carbs, protein and vegetables.” While he wasn’t deprived of sweets, “she never allowed junk food, fatty food in the house.” Her example taught him to take care of his body, and “do the things you’re supposed to do.”
The surgeon William Osler was once asked the secret to longevity. “Get a chronic disease, and learn to take good care of it,” he said. He meant that a chronic disease can be a blessing in disguise because it forces people to pay close attention to their bodies and do what it takes to stave off problems. Doesn’t it seem likely that if PWDs are vigilant about their own care, the examples they set will help people they love to lead healthy lives?
Furthermore, Michael says, “I didn’t think of her as being inspiring when I was a kid.. It took many years before I realized how much I learned from her. She wouldn’t let that disease stop her from doing anything. She was just a determined person, and that taught all of us we should be determined, too.” Her disciplined, calm approach to taming diabetes served as a continuous “life lesson” to Michael, who became a physical therapist and saw many PWDs who didn’t take care of themselves, and paid the price with complications.
As of now, 71 (!) 75-year Joslin Medals have been awarded. Joslin 50-year medals have been given to more than 4,000 people, including me, since 1970. There are many more PWDs who have survived for quite some time. Odds are that at least some of us have been bad parents and creepy human beings. But I bet many PWDs had a positive influence on our kids simply because we took the constant steps required to keep on keeping on, despite diabetes.
What about me? To make a long story –actually, a long, complex, sometimes dark Russian novel– very short, diabetes is not the only reason why it has been difficult to live with me. But Michael Schaffer made me think, for the first time, that it’s possible the disease has done more good than harm to my daughter, who is 26. I hesitated to ask her explicitly to confirm that, because I assumed she would say “yes” just to reassure me. But I did ask her to talk candidly about how my T1D has affected her.
At first, she didn’t paint a happy picture. She discussed some of my scary hypoglycemic adventures. Too often, she said, I’ve been irritable and unpleasant because of low blood sugars. She noted that, at an early age, the disease contributed to terror that she would lose me as well as her mother, and prompted her to think much too often and much too hard about the prospect of our deaths.
But she also said, “I guess it made me eat healthy food. That’s been good.” And then: “It’s hard to separate you from your diabetes. That’s who you are…I never think about how hard you work to control your blood sugar. It’s just what you do.” I waited, suppressing the impulse to fish for praise, or at least reassurance that I haven’t made her miserable. After a long pause, she said, “I don’t think I’ve been inspired by your diabetes, exactly. But what’s inspired me is how you deal with emotional issues, like depression. You get through things, you kinda hang in there, you keep fighting.”
She added something about difficult challenges confronting my current consulting business, then said, “You just kinda trudge along. You’re a trudger…I guess the diabetes taught you that, didn’t it?”
“It helped. Has it helped you?” I finally asked.
In the history of the word “trudge” (“to walk, especially laboriously or wearily,” according to Merriam-Webster), that is probably the first time it has been used as a compliment. She is working long hours as a documentary film maker, confronting the daily grind, frequent exhaustion and frustration at not having enough time to see her boyfriend and her friends or to exercise. She finally realizes that much of life requires the strength to just trudge, to walk laboriously past obstacles, and to save enough strength to enjoy the moments when you can glide happily, smoothly, despite your problems.
Maybe, just maybe, observing me cope with diabetes has helped her to learn –consciously or unconsciously- what it takes to trudge patiently, skillfully.
If it has, in order to give her that skill I didn’t need to run marathons, become a Supreme Court Justice or emulate other high-achieving PWDs who are usually held up as role models. All I needed to do was “kinda hang in there,” handle the relentless daily grind of diabetes management and live life as fully as I could, just like Patricia Schaffer.
I wouldn’t wish this disease on my worst enemy. But if the daily example I was forced to set helps my daughter to persevere in the months and years to come, to get what she can out of life despite the obstacles (while eating healthy food), that will mean diabetes has also been a blessing for both of us.