In today’s post, Lynn Wickwire, Joslin’s Patient Advocate, tells Speaking of Diabetes about the changes he’s seen in his nearly 72 years with diabetes.
On Being Diagnosed
One of the first things that a person with diabetes was told when diagnosed at 4 and a half years old—and I’ve had it now for 71 years, working on 72—was there were all of these bad things that could happen to you. You could lose a leg, amputation, you could lose your eyesight, you might not make it age 21.
And the interesting thing is that in the Joslin Medalists, when we’ve had reunions, every single one of the Medalists has the same story to tell. [They were all told] that there are going be all these horrific things that are going to happen to you, you won’t live past 21. To hear everybody else say that was an eye opener.
[When I was young] you didn’t know anybody else who had diabetes. Now it’s a different story withall the increases in the incidence rate in type 1s now, but at that point you didn’t know anybody.
And then I went to Camp Joslin, I started going probably when I was 8 years old. And there I got to see 100 or 150 other kids all of whom had diabetes! They were in the same boat. So you make friends, for example, Bob Amato in Providence. We were at camp at the same time and he went on to become the Providence College cross country coach, good runner.
On Getting Insulin Shots
We had glass syringes. I would have two glass syringes and then I would have three needles that fit on the end of the syringe. Two of them I would keep in the bottom of this little circular device, and then the other one was the one I was using with the syringe. But those needles over time would become so dull that they would even develop burrs and you’d have to sharpen them on a stone to get rid of the burr like you sharpen a knife. It was exactly the same principle.
At Camp you’re taught how to give your own shot, you use an orange and saline solution and so on. And I can remember after I learned, one time I was giving myself a shot and maybe I was 10 or 11, and the needle was so dull that it bounced off, it wouldn’t go in. Well you have to take your insulin, or you’re gonna die! So you just brute force, you know, you grit your teeth and “woosh!” get it in there.
On Blood Sugar Testing
There was no [easy] blood sugar testing. That didn’t exist. What they would do at Camp to test your blood sugar is all of the kids would line up outside this small building. You’d sit on a high stool and [3 lab techs] gave you a stick into your earlobe and then draw the blood into a long glass pipette, and then put the blood in test tubes and they had a centrifuge machine that was about maybe 2.5/3 feet wide, and they spin the blood and that would get you your blood sugar readings.
You had Benedicts Solution [for urine testing], but I think it was a couple times a week they’d do blood sugars, actual blood sugars.
On the Diabetes Stigma
I always felt that I could do anything. Having diabetes did not prohibit me from doing anything, despite what people would say. The one thing you learn, though, diagnosed young, is your diet was very restricted and totally different from nowadays. You go to a party birthday party, everybody would have cake and ice cream, you’d have maybe one piece of fruit. I mean there was definitely a stigma, never talked about but it was right there.
And that carried over because in high school, there were only a couple of friends who knew I had diabetes, who I told. That was even into college. I didn’t tell people. Which in many ways is kind of stupid. Nowadays everybody kind of wears it like a badge of honor. It’s a very, very different feeling.
When I was at Camp, I went through being just a camper, and then became a counselor-in-training, a junior counselor, senior counselor and in all of those instances all the cabins had at least one person who was not diabetic. Because they all thought everybody’s going to pass out the same time! When I was a senior counselor, my junior counselor was diabetic. I had the first all-diabetic cabin and I don’t remember how many kids were in the cabin, maybe 10. And that was probably in the 50s sometime, mid 50s.
Be sure to check back next week for part 2 of Lynn’s interview!