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Overview
In 1971 a girl named Alex was born with cystic fibrosis, a degenerative genetic lung disease. Although health-care innovations have improved the life span of CF patients tremendously over the last four decades, the illness remains fatal.
Given only two years to live by her doctors, the imaginative, excitable, and curious little girl battled through painful and frustrating physical-therapy sessions twice daily, as well as regular hospitalizations, bringing joy to the lives of everyone she touched. Despite her setbacks, brave Alex was determined to live life like a typical girl—going to school, playing with her friends, traveling with her family. Ultimately, however, she succumbed to the disease in 1980 at the age of eight.
Award-winning author Frank Deford, celebrated primarily as a sportswriter, was also a budding novelist and biographer at the time of his daughter’s birth. Deford kept a journal of Alex’s courageous stand against the disease, documenting his family’s struggle to cope with and celebrate the daily fight she faced. This book is the result of that journal.
Alex relives the events of those eight years: moments as heartwarming as when Alex recorded herself saying “I love you” so her brother could listen to her whenever he wanted, and as heartrending as the young girl’s tragic, dawning realization of her own very tenuous mortality, and her parents’ difficulty in trying to explain why.
Though Alex is a sad story, it is also one of hope; her greatest wish was that someday a cure would be found. Deford has written a phenomenal memoir about an extraordinary little girl.
Product Details
| ISBN-13: | 9781504007337 |
|---|---|
| Publisher: | Open Road Media |
| Publication date: | 02/24/2015 |
| Sold by: | Barnes & Noble |
| Format: | eBook |
| Pages: | 141 |
| Sales rank: | 634,036 |
| File size: | 1 MB |
About the Author
Deford’s 1981 novel Everybody’s All-American was named one of Sports Illustrated’s Top 25 Sports Books of All Time and was later made into a movie directed by Taylor Hackford and starring Dennis Quaid. His memoir Alex: The Life of a Child, chronicling his daughter’s life and battle with cystic fibrosis, was made into a movie starring Craig T. Nelson and Bonnie Bedelia in 1986.
In 2012 President Obama honored Deford with the National Humanities Medal for “transforming how we think about sports,” making Deford the first person primarily associated with sports to earn recognition from the National Endowment for the Humanities. He was also awarded the PEN/ESPN Lifetime Achievement Award for Literary Sportswriting, the W.M. Kiplinger Distinguished Contributions to Journalism Award, and the Associated Press Sports Editors’ Red Smith Award, and was elected to the National Sportscasters and Sportswriters of America Hall of Fame. GQ has called him, simply, “the world’s greatest sportswriter.”
Frank Deford (1938–2017) was an author, commentator, and senior contributor to Sports Illustrated. In addition, he was a correspondent for HBO’s Real Sports with Bryant Gumbel and a regular Wednesday commentator for National Public Radio’s Morning Edition. He won both an Emmy and a Peabody Award for his broadcasting.
Deford’s 1981 novel Everybody’s All-American was named one of Sports Illustrated’s Top 25 Sports Books of All Time and was later made into a movie directed by Taylor Hackford and starring Dennis Quaid. His memoir Alex: The Life of a Child, chronicling his daughter’s life and battle with cystic fibrosis, was made into a movie starring Craig T. Nelson and Bonnie Bedelia in 1986.
In 2012 President Obama honored Deford with the National Humanities Medal for “transforming how we think about sports,” making Deford the first person primarily associated with sports to earn recognition from the National Endowment for the Humanities. He was also awarded the PEN/ESPN Lifetime Achievement Award for Literary Sportswriting, the W.M. Kiplinger Distinguished Contributions to Journalism Award, and the Associated Press Sports Editors’ Red Smith Award, and was elected to the National Sportscasters and Sportswriters of America Hall of Fame. GQ has called him, simply, “the world’s greatest sportswriter.”
Read an Excerpt
Alex
The Life of a Child
By Frank Deford
OPEN ROAD INTEGRATED MEDIA
Copyright © 1983 Frank DefordAll rights reserved.
ISBN: 978-1-5040-0733-7
CHAPTER 1
Even now, so long after she died, even now it's still difficult to go through all the little objects of her life that she left behind. There is not that much that a child leaves, and Alex lived such a short time: small parts of 1971 and 1980, and all of 1972 through 1979, inclusive. She was born, diagnosed, lived all she could, and died before there was time for her to be laden with all the formal artifacts—letters and numbers and citations and all that grown-up bric-a-brac that comes with adult convention and ceremony. But there is not that much for a child. Why, some stranger coming across Alex's stuff would think she must have spent most of her life drawing.
What possesses us to hold onto these cream-colored papers our children scrawl on? I go through sheet after sheet that she attacked with crayons when she was only in nursery school. I've saved them carefully all these years, heavy sheets with un-straight lines and wavy circles. "That's absolutely beautiful, Alex.... What is it?"
Pause. Young children never have the foggiest notion what they might have drawn. They have drawn un-straight lines and wavy circles. But they humor us. "That's a car." Or, "That's Captain Kangaroo talking on the telephone in his pajamas." And then we rave at their imagination.
Reviewing her work, I can see that Alex did begin to develop some specialties in the art line as she got older: houses (always with smoke curling out of chimneys), bunny rabbits and dogs (you could tell them apart because bunny rabbits were the ones in spring), flowers and trees, both more resembling lollipops, and rainbows. Usually across the top was a ribbon of blue, the sky.
This is, all in all, a very happy collection of items she chose to celebrate, but I am reluctant, even now, to draw any conclusions. When our son, Chris, was in nursery school, we received a very solemn phone call from the teacher asking if we could please come and see her. It was extremely important. Worse, when Carol and I arrived, panicky parents, there was a child psychologist who had been called in too. He was obviously deeply troubled, and he and the teacher both tiptoed around, asking a lot of careful questions about our home life. It was soon apparent to me, too, that the psychologist was annoyed that we wouldn't admit to any traumas, beatings, or orgies at our house. Finally, he sprung the trap on us. He brought out a drawing Chris had done on the cream-colored paper. It was of a huge, clawed, fanged monster, spitting bullets and fire alike. Terrific picture; best he had ever done. Also, the monster was stepping on a house. Whose house, asked the psychologist. My house, said Chris. The implications were clear. What did I think, the psychologist asked me.
I said I thought that a monster movie Chris had seen the other evening on television had made a considerable impression on him.
I still have that drawing, too. And all of those that Alex did. Even if they don't mean anything, there isn't much you can save that your child did, even when it's important to you, even when you know she'll die and won't ever obtain all the official clutter that grown-ups do. Of course, there are home movies and a lot of snapshots. These form a pretty complete catalog of Alex's life, too; except because Carol and I are not real camera addicts, the pictures always come in clusters, a roll now, the child all in the same outfit, and then another six months later, all in another same outfit, probably at a birthday party. And, naturally, nobody ever had any flashbulbs at the right moment. The guilt is overwhelming when you have a child who dies. Even now I say to myself, at least, at least you could have had the flashbulbs.
I have a few recordings of Alex's voice, too, starting when she was almost three, in the fall of 1974, and periodically after. I would sit Chris and Alex down and ask them a few simple questions, and they would respond the best they could, between giggles. What do you like to do best, Alex? "Play house." What do you like to wear? "Long dresses." Mostly they were more interested in hearing themselves played back than in anything they might say. In fact, best of all for them was when the formal interview was finished and I would permit them to make optional noises into the microphone. Also, one whole interview I later erased by mistake. And I always forgot the damn flashbulbs. And then, all of a sudden, she's just gone; there's no more.
The last thing I have of Alex on tape is a recording she made with me one soft, shining day the summer before she died. She loved the silly messages I would make up for my telephone answering machine; I would put on an accent or work up a little bit—instead of just saying please leave your name and number. Alex pleaded with me to include her in the act the next time I made up a message, and so one day, when she was depressed because she had just found out that she had to go back into the hospital, I created a new routine with a good part for her, and we practiced it.
When someone called up and the phone machine went on, the caller heard the shower running. In fact, it really was the shower running, although I'm not sure it sounded like that. Anyway, then Alex came on the microphone, crying out, "Oh, it's the telephone, Dad."
And then I said, "Hey, I'm sorry, all the Defords are in the shower here, but if you'll just leave your name and your number and any message when you hear the beep, after I get out and get dried off and put some baby powder on, I'll call you right back, okay?"
And then the caller heard the shower running again, until just before the beep when Alex yelled, "Pass the soap, Mom!"
She adored doing that with me, and when she had to return to the hospital, we would call back to the house so she could hear herself on the phone machine. "Pass the soap, Mom!"
Alex had a great sense of humor, she loved to act, and I still enjoy going back and listening to that message (I saved it on tape), because, silly as it is, it has charm and life, and those are the memories I want of her.
And I remember too what fun Alex and I had doing it. In fact, when we finished making the tape we were having so much fun that she asked me what I was going to do next, and when I said I didn't have anything special planned, she said we ought to do something else together, and I said sure, fine, what, and she thought awhile, and finally she just said, "Laugh."
And I agreed that was a fine idea. Alex was always a great laugher. After she died, when the children in her class wrote remembrances of her, an unusual number wrote about times she had laughed. Their recollections were about evenly divided between her courage and her laughter, as a matter of fact. She laughed so well it left an impression. For example, Jake Weinstock wrote: "One time in school last year, Stephen Baker made Alex laugh so hard that she fell in my arms and then she laughed even harder. Then we all laughed."
And so then Alex and I laughed. Unfortunately, at that point, late in her life, it was difficult for her to laugh without coughing and starting to choke. So she made sure she laughed gently, and I laughed extra hard, for both of us. Then she came over, sat in my lap, and this is what she said: "Oh, Daddy, wouldn't this have been great?"
That is what she said, exactly. She didn't say, "Hasn't this been great?" Or, "Isn't this great?" She said, "Oh, Daddy, wouldn't this have been great?" Alex meant her whole life, if only she hadn't been sick.
I just said, "Yes," and after we hugged each other, she left the room, because, I knew, she wanted to let me cry alone. Alex knew by then that, if I cried in front of her, I would worry about upsetting her, and she didn't want to burden me that way. She was the only one dying.
CHAPTER 2So we do have a few words of Alex's left, preserved on tape. And I remember very well, too, the last words Alex spoke. She said, "I love you, Chris," when her brother came into her room to say good-bye to her. After that, after Chris left, Alex was too exhausted even to whisper and only talked to Carol and me with her eyes.
Actually, too, she didn't quite say, "I love you, Chris"; as always, she said, "I love you, Chrish." This is what she called her brother. Say it out loud, and you will see why. If you say "Christopher"—which is what most people called Chris are officially named—there is a solid break between the "Chris-" and the "topher." But our Chris is a Christian, and going from the "Chris" to the "-tian" requires the bridge of an sh sound, so that spelled phonetically, it is more properly Chrishtian, and therefore, in the diminutive, it really should be Chrish.
Alex started calling her brother that when she was about four years old. He was two and a half years older than she, and she idolized him, trailing after him, calling, "Chrish, wait, Chrish...." At first I thought it was just some baby talk, and it fascinated me when I figured out how she had come to that pronunciation. It is an insignificant thing, to be sure, but I point it out to show that Alex really did have the most incredible ear, as well as a gift for mimicry to go with it. My mother is from Virginia, and once, after visiting my parents for a few days, Alex came back with an absolutely perfect southern accent. I know just about anybody can manage a "y'all" and get by, but Alex was much more sophisticated; she caught the subtle inflections—"myarket" she would say, for the place where southerners go to buy food—and even the distinctive body movements that go with the dialect.
There was always an irony to Alex. She was, on the one hand, utterly vulnerable, helpless against this disease that was destroying her day by day, and yet she was, often, quite cool—even professional, I would say—in the way she conducted herself as a patient, as a victim. If she must be a victim, then she would be good at that. This is what made it so much harder for Carol and me, even as it made us prouder. Of all the people surrounding Alex, none played a role in the drama of her dying nearly so well as she played hers. And hers, of course, was the most difficult. Imagine knowing how, as a child, to go about dying. She never made any mistakes in that line. And it was, assuredly, not a matter of innocence either.
Her doctor, Tom Dolan, used to say that Alex was "seven, going on twenty-eight," and often with grownups a very discernible part of her made her their peer. I don't mean she was some woman-child, like a growing girl on the cusp of maturity who is never quite sure where she stands. Not that; but, uncannily, Alex always understood that something in her was already a woman, and she became what she had to be in the proper place. I think some of this came simply from being around adults more than other children, because she was so often in the hospital. But I think some of it was her secret, too. Alex sensed that she was going to die long before she truly understood it, and that made her special. Perhaps just that is what put her closer to God. I don't know.
Sometimes, when I went out with Alex, just the two of us, I really felt as if I was going along with a little person, a contemporary. In comparable circumstances with Chris, even though we might have more in common—two guys going to a ball game or something—no matter what, I always knew I was with my son. Alex mixed things up. She even took to calling me "my little Daddy" that last couple years. There was nothing rational in that—I'm not even physically little—but sometimes I thought it was really quite apt, that I was more her little thing than she mine.
People ask me, how can you do this, write about her, go through the anguish all over again? And that is a fair question. I am so sick of crying. It goes on and on. And it's strange in a way, because I thought I managed very well at the end. Why, it was supposed to be so difficult, but nobody ever told me quite how easy dying is, when it isn't you dying. No, the trouble is more afterward; it's the missing that's so hard. And this makes me miss Alex all the more, sifting through the drawings, seeing her face in the photographs, seeing her move on the screen, reading the things she wrote or people wrote about her, listening to her on tape. Pass the soap, Mom!
Of course, it hurts when anyone you love dies. But when it is a child who dies—when it is your child—as the grief fades naturally, there still remains that vacuum, and it is replaced by anger. More fury is growing within me that Alex never had her fair chance. I didn't have time to be mad when she was dying; there was no room for that then. But now ...
Then, too, the trouble with people who give so much, as Alex did, is that when they leave you there is so much more that they take away with themselves. And what makes it hardest of all with Alex is that she was so extraordinary, so special, that she has become a sort of ideal for me. Believe me, this is not just some sad and biased father talking. The teacher who was my adviser in high school, A. J. Downs, wrote me after she died: "Before we got too smart for our own good, we called people like Alex saints." Imagine yourself trying to live up to an eight-year-old child. It's very disorienting.
Cyd Slotoroff is a young woman, a pediatric music specialist, who entertained the children in the ward at Yale-New Haven Hospital, where Alex spent so much time. Cyd played the guitar and sang along, doing many of her own songs. She symbolizes many of the adults with whom Alex became friends. Cyd says:
"I would feel selfish when I'd come to the ward and spend so much time alone with Alex. It wasn't only that she was my favorite child; it was just that there was no place else I'd rather be than with her. Alex was inspiring. I always felt honored just to be in her presence. Why couldn't we all be this way? She was so full inside, felt things so deeply, and she really came to affect my life. She was the most extraordinary child I ever met." Cyd stopped and paused.
"No, that's not quite right. You know that—Alex wasn't ever just a child. However old she was, she was just a human being.
"And more than that. You know, I never talked to Alex about God or anything religious, but she was the most spiritual person I ever met. I was driving along in my car—this was right after she died—and it was a beautiful clear day. The sky was so blue, and all of a sudden it seemed as if Alex's presence had expanded and filled everything. She had been released. I'd never felt anything like that before, any time in my life.
"God, what a blessing that child was! What a gift!"
And sometimes it is something like that for me, too. I say, I'm sorry I did that, Alex. Or, I'm sorry I can't be as good as you, Alex. Or sometimes I think, what would Alex want me to do here? What would she expect me to do? It frightens me most that I will meet some great test in my life—maybe one for my life, as she did—and I will not be able to do as well as my little baby girl did.
CHAPTER 3For a few months there, right after Alex was born, I thought I had just about everything a man could want, at least in a textbook kind of way. I thought surely somebody from either the Census Bureau or the Department of American Dreams was going to get wind of me and come by and take publicity pictures. I had a job I loved, a career, a future, a house in the suburbs, and a VW bug and Ford Country Squire station wagon. I had a fluffy white dog named Chaucer who could sit up and beg, and a color television set that got good reception—eight VHF channels. I had a beautiful wife and a handsome, bright little son and heir, and, then, a daughter too. At the least, I thought someone should bring out a souvenir deck of cards featuring us, with a picture of the station wagon on one card, the dog sitting up and begging on another, me on a face card (probably the king of hearts), and so on.
(Continues...)
Excerpted from Alex by Frank Deford. Copyright © 1983 Frank Deford. Excerpted by permission of OPEN ROAD INTEGRATED MEDIA.
All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher.
Excerpts are provided by Dial-A-Book Inc. solely for the personal use of visitors to this web site.
Table of Contents
- Foreword
- Chapter 1
- Chapter 2
- Chapter 3
- Chapter 4
- Chapter 5
- Chapter 6
- Chapter 7
- Chapter 8
- Chapter 9
- Chapter 10
- Chapter 11
- Chapter 12
- Chapter 13
- Chapter 14
- Chapter 15
- Chapter 16
- Chapter 17
- Chapter 18
- Chapter 19
- Chapter 20
- Chapter 21
- Chapter 22
- Chapter 23
- Chapter 24
- Chapter 25
- About the Author
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