Yesterday was Father’s Day, and in honor of that, I’m posting an interview that I conducted with my father, David, last month when he was in town on a business trip. My dad and I have obviously talked a lot about diabetes over the years, but not as much recently because we live three thousand miles away from each other (he in Oregon where I grew up, and me in New York). The day to day dialogue of diabetes has gone away, and now I mostly keep my parents apprised of my latest A1c or any changes in my management, such as going off or on an insulin pump.
I wanted to find out from him what it was like to raise a child with diabetes, since I can only talk about my childhood with diabetes from my perspective. Just to give some context for my dad’s answers, I was diagnosed with diabetes in 1994 and was on NPH and Regular insulin until 1995, then was on NPH and Humalog until 2000, when I went on an insulin pump. I graduated and moved away to college in 2003.
For another more personal interview involving talk on relationships and marriage, check out the other part of my interview with my dad at With Faith & Grace.
Allison: When I was diagnosed, did you guys talk about how you wanted to integrate diabetes or did you have a strategy on your approach?
Dad: You go through the phases of shock, denial, anger. I don’t know how quickly we embraced it, but seemingly quickly, we recognized it was with us, we recognized there was nothing we could do about it, so we said we have to normalize this. So diabetes and everything attached to it had to be part of life like, without being cavalier, taking care of contact lenses or brushing your teeth every morning. You had to make it part of everyday.
Now, I don’t regret this at all, but we had a very routine life by design, which made us boringly unadventurous by design. We ate dinner at the same time everyday. I would hate to be parent of a diabetic in chaos. And the one thing your mother and I have witnessed over the years, life in America or life anywhere, is that people live in chaos. Sometimes avoiding chaos is boring, and it can be too boring and too set, but if you have something like diabetes, one of the best survival skills is to be routinized. If you only randomly took numbers, if you only randomly ate meals, all you do is chase diabetes.
I don’t recommend anyone chasing diabetes.
When it came to transitioning diabetes care from you and mom to me, what was your approach?
You were more unique than you think since in a way you always insisted on independence. We basically handed you diabetes as early as you would have taken it. You actually took ownership of it early on.
What advice do you have for other parents?
An analogy is letting your kid tread water in the deep end, but three feet from the edge of the pool and with the parent sitting at the side of the pool right there. Meaning you let them go, you give them the impression they are on their own, but in fact you’re watching them. But even still, depending on the kid’s personality, they are going to do what they are going to do any rate. There are just times, especially as an old teenager or a young adult, where the training wheels are off and there’s no putting them on or hovering by the bike. The kid’s on their own.
This question might be better for Mom, but I know parents — especially when dealing with younger kids — often feel burned out. Did you ever feel you were burning out on diabetes, and if not, why do you think that is?
I don’t think I would characterize our issue with diabetes as burn-out. But what I experienced was, and I know your mother did too, was that you’re failure with various criteria of diabetes was ours. We literally would emotionally beat ourselves up when you had lousy numbers, and back then we didn’t really understand A1C. We were more wrapped around daily numbers. It was like “Oh my God, she’s high. What did we do wrong? What horrible parenting did we do today to cause her to be high?” And you just beat yourself.
A lot of people do that now! So what advice do you have for getting over that?
See a psychologist, because it’s going to happen. You have to embrace the fact it’s going to happen. And therefore while it happens you just have to say we will do better tomorrow. And you try to do better. All you can do is try to do better. But if you go around beating yourself and what’s worse, if a parent goes around beating the child, verbally or emotionally, going “What did you do wrong today?” You just have to completely divorce yourself from the numbers and say we will hit the reset tomorrow and try it again.
It’s more insidious but it’s very much like being on a diet. Now, the idea is that you have to be on a diet religiously all the time. But everyone knows that you can’t really be on a diet religiously all the time. So shit happens and you make mistakes. You say I’ll do better tomorrow. It’s like any rehab or twelve step program. It’s like being an alcoholic. “Well, I had a drink, I’ll not do that tomorrow.” That’s a good attitude. But forever bullshitting yourself saying, “Well, it’s now been five months in a row that I’ve been bad, oh I’ll do better tomorrow” when you know damn well you’re not going to be and you’re going to fake it out again. That’s when you’re in a bad spot. An occasional screw up is normal and acceptable, but to normalize your screw-ups and to lie to yourself about it and bullshit yourself about it is bad.
I remember Dr. Hansen (Editor’s note: my pediatric endocrinologist) saying there will be a cure in 5 to 10 years, and there still isn’t a cure. What is your feelings on the cure? Is it something you guys expected and work towards or is something like if it happens it happens?
Well, we always expected a cure. Unfortunately for me, having observed business, the medical environment, and diabetes in specific, I don’t really there’s very much effort going into the cure because there’s too much money is being made in the maintenance. I think by now they could have mechanically made an artificial pancreas that actually work, I’m interested and pleased in pancreas transplants, but it requires a dead person to fix a live person. That’s not really a cure.
It just seems that knowing the problem, that it should have been cured by now. And I just don’t see cures happening, but I see a lot of work in maintenance, and certainly type 1 is the runt of the litter. There are too many type 2s, and the American diet is going to breed type 2s like mice. So that’s just going to get much worse and that’s actually curable if people would quit being stupid with their diet. So I just don’t see an economic incentive to cure diabetes.
If you were talking to a newly diagnosed parent about raising a kid with diabetes, what would you want them to know about raising a kid with diabetes?
It’s just what we’ve always said and always done. You’re normal, with a chronic condition. There are no behavioral changes. You get to be yell at and be mad at your child. They can do whatever they want to do. You don’t baby the diabetes in any way, shape or form. The only thing we learned a little late in life is when a diabetic child is acting completely obnoxiously off the rails, before you start yelling at each other, take their number and if they’re high, close the door to their bedroom and walk away. That’s tough because they know not what they do. So you’re arguing with temporary insanity. It took us awhile to get to “It’s not her, it’s the diabetes talking.” But the thing is, the diabetic will say incredibly hurtful things while they’re out of control.
So I remember some things you guys started to do was celebrate my diaversaries and giving me a dollar when I was 100. Why did you start that, do you think it’s good to reinforce diabetes management with money and prizes?
Well, it failed miserably as an incentive. It just became a talking point and a cute little target. I mean, did it work? Did you have fun with it?
Then it worked and you had fun with it. And you don’t know until you do a retrospective going did it work and did you have fun with it? I mean, on a good day it’s annoying, and on a bad day it’s a curse. So you try to put as much of a happy spin on it as possible.
I would say that of all the diseases children get, it’s not horrible. At least, we didn’t think it was horrible, but other people think it’s horrible. It’s chronic, but it isn’t horrible. You’re not in a wheelchair, you’re not debilitated, you’re not limited in your life. You’re not a cripple. You’re not a handicap. You can do everything other children can do. All it requires is maybe 30 minutes worth of maintenance everyday spread over every 5 to 6 hours.
I think it’s a little more than that.
Okay, maybe an hour. I mean to take your number and give yourself a shot, total time in really doesn’t add up to a great deal.
But don’t you think you were thinking, and maybe this is more — well, I’m curious how Mom will answer this — but don’t you think the time thinking about diabetes is a little more constant. Like is she low? Was that enough?
In the beginning, when you were a child, we probably thought about 2-3 hours a day. We’re talking about the work effort into maintaining diabetes versus the mental effort of coping with it. When you were a 12 year old, how often did you think about it? And if you say, not so much, there you go. When we were training you and training us, we thought about it probably three hours on average. Maybe two, maybe four. I don’t think I would characterize it as more than that as mental involvement.
We were fortunate enough that you did take ownership of your diabetes early on. So we stopped taking your number quickly, we stopped giving you your shots within a year or two. You didn’t really seem to outwardly object or handwring about shots and numbers.
I would say that for two to for years, we were mentally involved in bad numbers. That’s when we sort of pulled away from it going, “We’ve got to stop beating ourselves up.” Your number was not a score. It was not like golf where the low score wins. “Oh look a 110! We’re so cool! We’re the best!” “Oh no, a 200! Oh shit! We’re lousy parents.” “325! God, we suck! Let’s go beat ourselves with sticks.” You just can’t do that! It’s not a score. It’s not an indication of how you are as a parent, as a diabetic parent, or as a human being.
That is my advice to parents. You need some separation between the score and you and how you think of yourself and how the child thinks of themselves and how you treat them when there’s a bad number. It’s not finger-pointing. It is “We will try to do better, collectively.” Everybody’s got skin in the game. You know what? Thoughts and emotions are irrelevant. Bottom line, I don’t care what everybody thinks. We’ve got a disease and we’re just going to have to deal with it.
“Well, I just think we’re going to knuckle down and start testing every hour and a half.” No, that’s not the answer. “Well I’m tired of getting involved, I think we should just quit looking at this thing for a few days.” No, that’s not the answer. Grind it out, but you’ve got to pull your brain away from it.
Nowadays, thinking about diabetic who are adults, did you guys feel that you were prepared in being away from me as a college student and as an adult? Do you wish there was more training or support in transitions?
This is the only point where I think your mother would give a different answer. I was fine with what we did. I’m more dispassionately inclined. Your mother, perhaps being a woman, perhaps being her, was more emotionally involved with the ups and the downs, mainly on the downs. I like to observe other parents. I observe other parents who overshoot or undershoot the problem. And I found that I was more satisfied with the way I was handling it for me than watching other parents handle it.
How did you handle it?
I go back to your friend from camp. I thought her parents were the most God awful diabetic parents. I think it had to do with her personality as a child and her parents as parents and how it related to her diabetes. She was a horrid diabetic as a teenager, very self-destructive. As an observation, I didn’t think her parents were playing the same game. Her mom was too involved and her dad checked out. Her mom’s over-involvement pushed her away and she was very self-destructive, and that’s unfortunate.
So you felt you were more even-keeled?
Your mother and I did not fight over parenting a diabetic. We seemed to be in the game the same away. The only time we pulled each other off of something was with bad numbers. I was the more neutral male, unemotional, playing Mr. Spock. Logic says we did everything fine, shit happens.
Amen! Curious about my mom’s perspective on things? Her interview will be posted on The Blood Sugar Whisperer later this summer.