"I'm glad he met you first"
“I’m glad he met you first”
This is a small but powerful quote from the last few minutes of the classic movie “ET, The Extraterrestrial”. One of the kinder Scientists, Mr. Keys, asks Elliot what more could be done to help an ailing ET, plus explain the “phone home” device. Keys goes on to acknowledge to Elliot that ET was not left here on purpose, and that Elliot had done the best anybody could do to help him. His closing words to Elliot being “I’m glad he met you first”. If you’ve seen the movie, you appreciate the true depth of that statement.
A diabetes diagnosis can make us and our children with diabetes feel like we’ve been dropped into a strange new world too. Lost and afraid. Full of fear and anxiety. I believe how we are introduced to this new world (and by whom) has a tremendous impact on how we go on to understand and perhaps accept our new reality and work with it over time. In that regard, who was your real “first contact” who put you on a road to living well with this condition?
The reason I write these posts and became a peds endo is to honor my parents. When we were confronted with my diagnosis on March 1, 1966 the field of diabetes education was vastly different. In that era, training revolved around a book actually written by a person named Elliot: Elliott P. Joslin, the father of diabetes education. The “Diabetic Manual” was mostly written for adults, not children. I still have the copy my pediatrician gave my parents, signed by my doctor. We also stayed in hospital for days to weeks, even though at diagnosis I was not in DKA. I spent 9 days in a children’s ward. It was a different era.
I couldn’t really understand the Joslin Manual. Most of the words were well over my 3rd grade level of comprehension. My nurses handed me an orange (yeah, a piece of fruit) and instructed me to practice giving it insulin shots. Hospital meals were fairly bland (not everything has changed in hospitals). We were given a single tear sheet of what I could eat (a 2000 calorie diet). My parents gave me all my shots when I went home. Diabetes Educators were pretty non-existent in our area so we never saw one. I never saw a peds endo. Those too were quite hard to find as it was an emerging discipline then.
My folks really didn’t know what to expect. Back then, a type 1 diabetes diagnosis was fairly grim. Blindness, limb loss, kidney failure. That’s what I remember hearing. Privately I would find later on as an adult that my folks thought I wouldn’t be around a long time. I think this is an emotion that many if not most parents of newly diagnosed children with diabetes struggle with at some point or another.
Good news. Many of you already know that longevity of children with type 1 diabetes is as good if not better than their non-diabetic peers today. Most likely this is due to the better care that children with diabetes tend to get compared to non-d children. But if you think your d-child faces a shorter lifespan, think again; cure or no cure.
My “first contact” discussion with new families adjusting to life with diabetes revolves around a few core messages I will outline next. I can’t hop into the time machine and give my parents an educational re-do, but I can be there for all the new parents facing this today. This is how I honor my folks.
First, I advise parents that attaining a normal life is the most important goal I wish for them to consider adopting. This has nothing to do with numbers or machines. It’s an attitude. And “normal” is in the eye of the beholder.
Next I emphasize that no one caused this situation to happen (the diabetes) and that the child or teen is not “broken”. As a result, there are no reasons to feel pity and certainly no reasons to drag guilt into the room. Guilt is Kryptonite to a person with diabetes.
As I have written about before, I immediately attempt to remove the use of “good” and “bad” from any aspect or discussion of diabetes self-care. For example, no “good” or “bad” numbers, simply in-range, high or low. These judgmental terms best left to theological and political discourse, not a discussion of diabetes. I tell parents that I don’t want to be judged by others and I sure don’t want to judge others. I leave judgment to a higher authority above.
Finally, I try to insert a thought (seed might be a better term) about dynamic versus static thinking. This is the most medical I get in a first intro. But it’s important to understand that, like life, diabetes is dynamic. Constantly in flux. One long term aim will be to learn to master the forces of flux and tame them to bend to your wishes. It’s a lot like taming a wild animal and this was a metaphor used for decades by Dr. Elliott P. Joslin himself as he conjured up the image of a team of three horses (food, exercise and medication) which the person with diabetes needed to tame and harness to pull the chariot of control forward. It’s a great metaphor.
Of his many memorable quotes, these two are Joslin's most prescient “the person with diabetes who knows the most, lives the longest” and “learn as if you are to live forever, live as if you are to die tomorrow”.
Live well folks. I hope you have found someone (or several) who you were glad you met on the road to living well with diabetes. And as always, feel free to share these thoughts with others.