She was dear and noble, and nothing ever controlled her.
I expected one of the most difficult categories of the 52 week book challenge to be “The book that makes you cry” and I was right. I read a few books that I thought might have an impact, but while I could appreciate the moroseness of the situations, no tears came.
Deep down, I knew the book I had to choose for this challenge. The one book I could count on to reduce me to ugly crying tears. Even after thirty years, even after multiple readings.
I first came upon the story of Alex Deford at my grandparents’ house. Reader’s Digest ran an abridged excerpt in one of its issues and shortly after a tv movie came out. After sobbing hysterically during the film, I made my mother drive me to Waldenbooks the next day so I could get a full copy of the book. At twelve years old, the story of Alex’s struggle touched me in a way I still can’t explain. Though not a bestseller, many of us who read this book have a devoted, near obsessive love for it and Alex herself.
In October 1971, Sports Illustrated writer Frank Deford lived an idyllic life in Connecticut. Married to a former model and father to a healthy son, the birth of daughter Alex completed the American dream. Briefly. Just four months later, Alex was diagnosed with cystic fibrosis, a genetic disease that causes the sufferer to produce too much mucus in the lungs as well as other ailments. The disease is progressive and fatal. Even today, the life expectancy is 37.5 years (Cystic Fibrosis News Today). Back in the seventies, the age was eighteen. Alex only made it to eight.
Yet, even as her health deteriorated, Alex’s vivacious nature kept her and her family going. Up until the last week of her life she had no intention of going gently into that good night and held out hope that there would be a cure.
Deford wrote the book shortly after Alex’s death as a way for his adopted daughter to get to know her older sister. He chronicles Alex’s life by interviewing those who knew and loved her, revisiting entries from the diary he kept and sharing memories and philosophical reflections. But the book is more than just a biography of Alex. It’s a look into the lives of families affected by terminal illness, something those of us blessed with health don’t have to think about and probably can’t really comprehend. While Alex’s presence no doubt made their lives better, it’s fair to say her disease made their lives more challenging. Simply put, it’s an account of the toll a terminal disease can take on a family.
Because the reader knows how Alex’s story ends, her eventual death looms in the distance, adding weight to all the action that comes before it. Part of what makes the book so devastating is knowing that Alex’s suffering (and there’s a lot of it) will ultimately yield nothing. Deford mentions this himself in a refreshing display of deserved bitterness and righteous anger. He doesn’t shy away from “negative” emotions or hide the truth behind saccharine sentiments like “There’s a reason for everything” or “God must have needed another angel” drivel. He knows his daughter got a dark cloud and he doesn’t pretend there’s a silver lining. While I don’t begrudge people taking a more optimistic approach to grief, sometimes it feels like it belittles the person’s life and suffering when we act like there’s an upside to their death.
Forty years after her death Alex still impacts those of us who read this book. Her story is inspiring and long-lasting. Cystic fibrosis robbed Alex of years, but it didn’t diminish her spirit.