Elle And Coach

040bf717d0da3d6a2fe11a0e36453408I thought that this would be an easy book to read and an easier review to write.

After all, Michael J. Fox explained:

“This book is so much more than a heartwarming story about a triumphant girl and her amazing dog. It’s a book about never giving up hope.”

I’ve read about hope. I’ve read about people with diabetes and their triumphs. Add a dog to the mix and even more entertaining. Easy.

I couldn’t get through the first chapter without sobbing. I had to put the book down and walk away. Once I got up the gumption to attempt a second chapter, I found myself wiping tears off the pages.

Stefan Shaheen, Elle’s mother, wrote this book about her daughter with help from Mark Dagostino, a NYT bestselling author, but it was Elle’s diary entries beginning the chapters that impacted me the most. Chapter 1, Diagnosis begins with:

“I was so scared. I actually thought I was going to die.” – Elle, age 12.

I don’t know what it’s like to have a child diagnosed with Type 1 diabetes, although The Kid is four and we don’t know what the future will bring.

I do know, however, what it’s like to feel sick and think you are going to die. I scribbled in my diary at twelve:

“I’m drinking a lot of OJ and water. A lot. I’m thirsty all the time. I’m tired all the time. I don’t know what’s wrong with me. I know I should tell my parents, but I’m scared.”

Reading of the days leading up to her diagnosis sent me back in time to my own pre-diagnosis days. For those of us who live with a chronic illness and can remember those days before, it’s a tough chapter, regardless of the chronic illness you have.

The lack of knowing what’s wrong, but knowing something is not right is universal when it comes to health. Elle’s attitude and her parents’ attitude were normal, because nothing is never normal again.

The second chapter was also difficult for me, because Shaheen delved into the statistics that I abhor. These statistics need to be shared and shouted, because diabetes is an invisible illness. Many of us work very hard to “look normal” and not let diabetes rule our lives, but the book eloquently shares how diabetes doesn’t care how you look or if you want a break. Elle’s first diaversary was also her first seizure.

I wanted to kiss Stephany when she shared her frustrations about daily life with diabetes and how disruptive it can be – and not in the way one would think. It’s not just checking blood glucose and ingredient lists; it’s hours arguing with insurance or pharmacies or ferrying supplies to different locations. It’s the constant nagging feeling in the back of your mind: “What’s the latest blood glucose? Did I give too much or not enough insulin? Where are the juice boxes?” It doesn’t stop. Ever.

The grin slowly grew as I read:

This cannot be as hard as it seems, I thought. It’s 2007, for crying out loud!

And then the grin faded as she shares the heartbreak of Elle apologizing for a low blood sugar. I apologize to John all the time when I’m low. It was painful to read the reaction from a loved one. I don’t get to see it from the other side.

Elle does get a service dog named Coach, and I don’t think I’m going to give away any spoilers in sharing that he has assisted her in her daily diabetes management that goes beyond what a continuous glucose monitor can do.

And here’s why I love this book: this is not a “…and they all lived happily ever after.” Stephany doesn’t pollyanna this experience; she was reluctant to get a service dog.  Elle was denied by a camp director going back to a summer camp that she attended post-diagnosis before she got Coach. Elle still has diabetes. (Wait, is that a spoiler?)

The story is heavy on the Shaheen side of the family (they are a prominent family from NH; Stephany’s mother is a member of Congress and former Governor) and detracts from the story of Elle and Coach. (Elle’s dad has a brother with Type 1 diabetes, but after a few brief mentions, is excluded from the remainder of the book.) Not everyone gets to meet Dean Kamen and Michael J. Fox and other celebrities without the connections the Shaheen family developed through politics. The side stories were superfluous.

It also focuses solely on the early days of diagnosis with a young child. Even though the final words are written six years after Elle was diagnosed, very little is said about her life with diabetes now. How is she adjusting to being a teenager with diabetes? No burnout? How does a diabetes alert dog factor into dating? Not even a post-script from Elle. That was disappointing.

Elle & Coach is not about finding a cure for diabetes. It’s about finding what works until that cure is found. For Elle, it’s Coach.

My final thoughts: Go get a copy. I highly recommend it. Keep a box of tissues handy. You’ll need it.

 

2 comments
  1. I always wonder if I should pick up a book when someone advises to have tissues handy. “Child, know thyself.” I’ve been saying that a lot lately. My 15yo TWD daughter and I are currently participating in a teen group therapy research project. Each week, I leave with a heavy heart and troubled thoughts, carrying the other participants burdens out the door and into the rest of my day. I want to read a book that teaches (and I mean REALLY teaches) me how to adopt a chill attitude about my teen’s self-care at the exact moment I’m sponging on all the excellent diabetes tricks and tips I get from FFL conventions, JDRF summits, books, podcasts, and the beautiful DOC. I might still read it.

  2. And – Elle’s grandmother, Jeanne Shaheen, is instrumental in the CGMS/Medicare issues.
    http://www.shaheen.senate.gov/news/press/release/?id=0b2d6768-1d13-4b35-ac56-b718c0dbebe2

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