Several weeks ago I wrote a column praising a novel by Frank Deford called “Bliss, Remembered.” Deford is best known as a sportswriter for Sports Illustrated but his elegant prose can transfer to any subject matter. After one of my friends read the column he recommended one of Deford’s older titles from 1983 that was totally unrelated to sports. It ended up being the most touching, heart-wrenching book I’ve ever read.
In “Alex: The Life of a Child,” Deford describes the life and death of his daughter Alex, who suffered from cystic fibrosis. She lived a little more than eight years. The premise was so sad I didn’t think I could make it through the entire book. But my friend told me the ending was uplifting so I hung in there. It was worth every page that I read and every tear that I shed.
For those that don’t know, cystic fibrosis is a chronic lung disease that usually affects young children. It causes a thick, sticky mucus to build up in the lungs and digestive tracts and can often result in death at an early age. For a child to be inflicted with the disease both parents must carry the defected CF gene and usually don’t know it. When Deford wrote his daughter’s story most children with CF died in infancy.
Today there has been enough advancement in research and treatment that many sufferers survive into adulthood, and even marry and have children. In one sense the title of Deford’s book is a bit misleading.
The narrative is about more than just Alex. She was a brilliant little girl who had a zest for life, and a maturity that extended well beyond her pre-adolescent years. But her life is only part of the story.
Deford leaves no stone unturned. He discusses what it’s like to be the parent of an adorable child who is condemned to die at an early age. He and his wife had to literally pound Alex every morning to get the mucus out of her lungs. That routine was followed by a half hour of medication that they often had to coax Alex to take. Then there were the unscheduled visits to the hospital that often became routine.
Can you imagine having to “torture” your child every day of her life? Or dropping everything to rush to the hospital?
Or the “guilt” that would consume most parents even if they unknowingly carried the gene that afflicted their daughter? It’s no wonder that the stress of dealing with childhood maladies such as cystic fibrosis can destroy even the best of marriages.
And how about the reaction of the healthy siblings who grow up with a lack of attention while still instinctively being the protector and idol of the younger sister?
How do parents make sure they’re not forgotten, or, when the time comes, to tell them that their sister has died?
It’s all very heavy duty. Fortunately, the book is not all about death. It focuses as much on life and how Alex made the most of it. While she had to deal with an hour of “pounding” every morning, and an additional half-hour of medication, her parents made every effort to see that she lived as normal a life as possible. She traveled, played games, and attended school regularly. You cannot help but love Alex. There are so many instances that leave you tearyeyed simply because she was a magnificent human being.
If her mother ever grew sad and was about to lose her composure Alex would deliberately become difficult and obnoxious to get her mother refocused. Once, when her father was about to cry during a painful procedure to repair a collapsed lung, she made the doctor stop for a minute so she could wipe the tear from her dad’s eye.
For Deford, writing “Alex” must have been a catharsis.
He was able to relate the difficulties that a family with a disabled child must face yet could deal with because of the joy their child brought to their lives. I know several people with disabled children in Cooperstown and they all seem to have an upbeat and appreciative attitude towards life. When you think about it it’s really not surprising. People with disabled children never take things for granted. For those of us fortunate enough to have perfectly healthy kids this book will make you appreciate that fact even more.
Deford suffered a personal loss 30 years ago, but by sharing Alex with us turned it into our gain.
We can all be grateful for that.
THANKS to Fred Doubleday for recommending the book and donating it
Book Notes
March 3, 2011
Book Notes: Author's loss is reader's gain
- Book Notes
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- Memoir reflects on 'roller-coaster life and career' Apparently, the third time wasn't the charm. The way Reynolds described him, the third husband was worse than the first two combined and that's saying a lot. Eddie Fisher literally walked away from Reynolds and their two infant children to chase a sex goddess. At least he got his just desserts when Elizabeth Taylor tossed him aside for Richard Burton.
- 'Who's on Worst?' reveals the ugly in baseball The Baseball Hall of Fame celebrates the greatest players, managers and owners from our national pastime. Any of us who have watched Major League baseball have inevitably seen some of these immortals practicing their craft. But we have also likely witnessed a sample of their opposite brethren, players who shouldn't have been in the Major Leagues. Has there ever been a definitive source that "celebrates" the non-accomplishments of the worst that Major League baseball has to offer?
- Book takes readers on path for equal rights One of the most troubling aspects of our history is race relations. It takes a long time to achieve true equality in a society when the heritage of one ethnic group is slavery and Jim Crow laws. Even today African Americans are more likely to be stereotyped as athletes than doctors, lawyers or entrepreneurs. The path to a "color-blind" nation is still a work in progress.
- Piazza wasn't considered much of a prospect for the majors It's probably going to be a quiet few days in Cooperstown when Hall of Fame weekend rolls around this summer. The baseball writers did not elect anybody this year despite some heavyweight candidates. The problem was that at least three of the poster boys for the steroids era, Barry Bonds, Roger Clemens and Sammy Sosa, were on the ballot for the first time. The writers were clearly making a statement when nobody got elected.
- Who would have thought e-books would be so popular? When I was in library school 25 years ago, a future concept was presented that seemed absurd at the time. It was the notion you could read books on a small computerized device about the size of a pocketbook.
- 2012 was a year of great films, future favorites The year 2012 was a blockbuster year for great films. Several of the movies up for Best Picture would have been runaway favorites almost any other time. They will make for easy pickings for the library when they become available on DVD.
- Blockbusters are not the only movies worth watching Hollywood makes enough movies that there are always a few that you don't hear about until they are on DVD. Sometimes they are simply horrible films that end their theater run quickly, but often they are "diamonds in the rough" that made their mark at film festivals.
- Mickey Mantle biography shows the good and the ugly It has become obvious in recent days that bestowing "hero" status on athletes is a misplaced priority.
- Book looks at 50 years of James Bond movies When I was in elementary school, James Bond was all the rage. For some reason I didn't see any of the early films with Sean Connery playing the infamous 007 British spy, but my siblings and several friends certainly did.
- Two thumbs up for the film 'Arbitrage" Arbitrage is a word that 99.99 percent of us probably never heard of until the movie with that title appeared. I looked it up on Wikipedia and discovered why nobody had heard of it. It refers to Wall Street financiers and has a meaning so convoluted that I couldn't figure it out.
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