'Cause you’re an aggressive, competitive, sometimes cocky, heck of an inspiration. Philbert.
This is the story of an ordinary kid. A kid with some passion and personal ambition who chased a dream and found some unexpected consequences while making other plans. I am not even sure that it is extraordinary that this kid brought type 1 diabetes, literally, along for the ride.
I am a parent to two type 1 diabetics. I find the most amazing thing about kids and adults successfully living with type 1 is their ability to put diabetes in its place. Second, close, but not first. It gets attention but not the title. Diabetes comes second to living life. These folks drag diabetes, kicking and screaming, into their dreams of the future. Dreams that diabetes at first seems to deny, yet in many enables. Dreams of acting, competing, writing, parenting, contributing and yes even professional bike racing.
Phil’s is one of these story. Diabetes, his family was told, would close off personal dreams and aspirations with blindness and early death. Ultimately it facilitated greater opportunities. That the story unfolds in this book.
It is not the story of a master plan but a process of growth to a life beyond, in spite of and because of diabetes. It is a story with a positive supporting cast of halloween candy, Snickers, Oreo Blizzards, Super Big Gulps, burritos and characters that come with them. I encourage you to discover and experience them yourself. They brought me a lot of big smiles.
As a type 1 parent I was particularly interested in reading how Phil viewed his mom’s roll in his life and with diabetes. I carefully make a distinction as we have rolls as parents and in diabetes management but they aren't always the same things. I see type 1 parents’ goal as raising kids to be creative, individuals actively purse their dreams as moral, useful contributors to society bringing diabetes along. That process isn’t flipping a switch and saying “Done!” it is gradual evolution. Seeing that process unfold in Phil’s life from the child, teen and adult’s perspectives is a uniquely valuable view for parents regardless of diabetes.
Phil’s story reinforces my belief that parenting diabetic kids isn’t about numbers. It is about the values that make for creative, active, useful, participant in life. On the rare occasion that Phil’s story talks about numbers it is to make points beyond them. About self care needed to facilitate the dreams. That Phil’s journey isn’t about numbers and is about discovering and channeling passions is a wonderful affirmation of brilliant parenting.
To a dad of two type 1 kids and two kids with their own challenging opportunities Phil hits real close to home when he writes about the risk of the non diabetic siblings becoming the others. That is something the diabetes parenting community doesn’t talk enough about. I worry that I am guilty of falling down in this area but take comfort in the idea that I fall down and stand up for the diabetics too. I hope my lack of parental perfection evens itself out.
A lack of perfection is one of the false gods of diabetes. We make idols to it and pray to those idols seeking comfort in numbers. In doing so we elevate numbers to goals and risk a myopia that totally misses the idea that variation can be part of a healthy learning process. Phil ranged about seeking adventures on a bike. Numbers went along not in the pursuit of perfection but in the support of the freedom to roam.
One of my favorite lines from the book anticipates being less than perfect. It is brilliant, sage and simple advice, “A key part of being a diabetic is choosing trustworthy friends, reliable friends that you can depend on in a crisis.” I submit that is equally true if you take out ‘being a diabetic’ and insert ‘life’ but possibly more true for diabetics.
I think that a similar substitution is true of the book as a whole. It isn’t about diabetes it is about life. As such “Not Dead Yet” is great read for anyone whether they live with diabetes or not.
Through this book Phil becomes a friend. It is clear that, as a regular guy, he expresses friendship through good natured ribbing and honest, brief, airing of differences. So here friend, three hundred odd pages and other than a typo on page 272 (that is OK, I am good for a typo every sentence or two) I loved all but three words. The title.
To me type 1 isn’t about death it is about living. That I have such a different attitude from our family’s experiences than he does from his says a lot about the changes in expectations from Phil’s diagnosis in 1982 to our first twenty years later. So I affectionately recommend to Junior a better title, from last three words, of the first paragraph, on his second to last page.
“I will Live”
The problem with my suggestion is to see that title’s real value, you need to have traveled the previous three hundred and seven pages. Those pages share Phil’s story of how to really live. It is a great ride. I recommend it highly.
I was given an review copy. I intended, after reading, to raffle it off. Having finished it, I want the kids to read it. So sorry you will have to buy a copy.
I understand the book goes on sale Tuesday May 10. There is a Pre-Order link right up there in the spiffy banner the PR folks let me use.
I look forward to sharing comments and spoilers as folks get their own copies.