by Frank Deford
After the therapy was finished, we had to start on the medicines. I recall how exciting it was during one period—Alex was two and a half—when she only had to take one antibiotic. How glorious that was, just one antibiotic every day. Usually it was two, and Dr. Dolan had to keep changing them, as Alex’s body built up immunities.
She had to take many other medications, too, including, relentlessly, an enzyme preparation named Viokase. The bulk of Viokase is animal enzyme, which Alex needed because her pancreas couldn’t produce sufficient enzymes of its own. Relative to the medicines that dealt primarily with her lung problems, Viokase was pretty effective. The minority of CF patients who don’t have lung involvement initially can get by with the pancreas problem as long as they diligently take their enzyme substitutes. Alex had to take Viokase every time she ate anything. Of course, considering her lung condition, this seemed like small potatoes. Carol and I didn’t even think about it much.
For most of her life, before she learned to swallow pills, Alex took the Viokase as a powder, mixed into apple sauce, which was an inexpensive carrying agent that could transport the drug into the system without its breaking down. And so, before every meal she ever ate, Alex had a plate of apple sauce with the enzyme powder mixed in. It was foul-tasting stuff, a bitter ordeal to endure at every meal. “Oh, my appasaws,” she would moan, “my appasaws,” always pronouncing it as if it were a cousin to chain saws or buzz saws.
“Come on Alex, eat your Viokase,” I would say, and rather impatiently, too. After all, she had already been through an inhalation treatment, a half hour of physical therapy, several liquid medications—so what was the big deal with the apple sauce. Come on, let’s go. Alex had had a great appetite when she was younger, but a few years later she’d just pick at her food. It occurred to me then that if all your life eating was a project, and you couldn’t eat a lot of the delicious things everybody else enjoyed, eventually eating would bore you. Imagine having to start off with apple sauce every time you ate anything—and not getting much sympathy for it, either.
Later, doctors and nurses or other people would say, “Alex seems to have lost her appetite,” and I would nod gravely, being pretty sure by then that it was psychological. Eating, like everything else for Alex, had become strictly a matter of staying alive.
When she was very young, before she began to comprehend how pointless it all was, Alex was wonderfully accepting of all that was demanded of her. At first, like any baby, she wasn’t in any position to quibble; she just seemed to go along, assuming that inhalation, apple sauce, and all that were things all babies endured. When she played with her dolls, she would give them therapy, putting off the down ones if the dolls behaved. After a time Alex began to notice that her brother was not required to endure what she did every day, but that didn’t bother her too much either. Since she was the only baby girl around, she simply assumed that therapy was something that all babies and/or all girls must go through.
Only slowly did the recognition come that she was singled out for these things. Then she began to grope for the implications. One spring day when she was four, Alex came into my office and said she had a question. Just one was all she would bother me with. All right, I asked, what was it. And Alex said, “I won’t have to do therapy when I’m a lady, will I?”
It was a leading question; she knew exactly where she was taking me.
As directly as I could I said, “No, Alex”—not because I would lie outright about it, but because I knew the score by then. I knew that she would not grow up to be a lady unless a cure was found.
Chapter 7
The summer before, 1974, we had moved to Westport, and by chance this brought us closer to the cystic fibrosis clinic in New Haven instead of the one in Hartford. Carol started taking Alex to Yale-New Haven Hospital for her regular checkups. It was still only a matter of checkups. Alex hadn’t been required to go back as an in-patient since infancy. And so, one day early in December of 1974, Carol took Alex up to Yale-New Haven for a regular appointment. Her new doctor was Tom Dolan. He is a Harvard man, a Red Sox fan, and a golfer, but, notwithstanding these constitutional deficiencies, I learned to put up with him.
Tom Dolan could no doubt be making a better living with more comfortable hours in private practice—and once he left the clinic and tried that—but he soon returned to Yale-New Haven and his young cystic fibrosis patients. I don’t know how he does it. Nobody he takes care of ever gets well, and most of them die in his care. And it’s not his fault, and they’re children. It’s a hard loaf for Tom Dolan—and for all the doctors like him. It was as easy to admire him as to like him.
Long before I had met Tom I had learned, at a Foundation trustees meeting, that perhaps the worst thing about cystic fibrosis is that it attracts a bacteria known as pseudomonas. The excessive, filthy mucus overwhelms the defense mechanisms in the lungs, so the pseudomonas bacteria colonize there. Pseudomonas is most common with cystic fibrosis, but it is also a threat to patients who have been severely burned, and it is found in the bloodstreams of certain types of cancer patients. Still, for all the research that has been done, there is as yet no antibiotic to deal with pseudomonas, and once it begins to march through the lungs, it multiplies with impunity and sweeps everything in its path. For any cystic fibrosis patient, pseudomonas is the harbinger of death.
Carol came back from the checkup that day in December and told me Dr. Dolan said that Alex had this new thing in her lungs. Obviously, he had tried to put the best face on it, and I played altogether dumb. “What’s that?” I said. “Pneumonia?”
“No, it’s pseudomonia,” Carol said, still not sure, and when she went on and told me what I already knew, that there were no antibiotics to combat it, I downplayed that news too. We were usually pretty honest with each other, but this was one time I didn’t see any sense in upsetting Carol any more than necessary. Just because I knew too much, why should she also have to hear the other shoe drop? She’d know soon enough.
I already did. I was puttering around my office a few days later when Alex came gaily skipping in, all dressed up. It was my birthday, my thirty-sixth, and we were going to have a family party. She was so happy, so pretty, and it destroyed me, because suddenly all I could notice was her fingers. It hadn’t hit me before. They were starting to get clubbed from the disease. It was the first real outward and visible sign—there wasn’t enough oxygen to reach the tips of the fingers—as sure as the pseudomonas was starting to ravage her in places we could not see.
So, on my birthday, I started to cry, and held her to me, and told her they were tears of happiness. She was young enough then to believe me; she still took the world at face value, as healthy kids do.
But it was, starting about that time, that Alex began to sense our apprehensions, her plight; somehow then, if only subconsciously, she began to understand that she might die, whatever that meant. More and more death became a part of her.
Chapter 8
Instinctively, Alex began to understand how different she was before she began to look different. At ages four and five, between 1975 and 1976, when she was going to nursery school and kindergarten, she was still a little chubby. I once actually noted in her diary that she had lost some weight and looked a bit prettier for it. How innocent I was; in another couple of years I would have killed lions and tigers with my bare hands if that meant we could get a half-pound back on her. But at that time the medicines and the treatments kept her on an even keel. Her clubbed fingers were not yet apparent to those who didn’t know of her illness. Rarely did she cough between therapy sessions, when we forced up the mucus. Reluctantly, she put on pants in the winter and rarely missed a day of school.
But she knew. Alex knew something was up with her. She did not see herself as “special,” either. We too often disguise the truth by employing that word to gloss over harsher truths—especially where children are involved. That is wrong. We are all made different. We make ourselves special. Alex was born different, but only as she grew
did she become special, on her own hook. If you start off saying a child is special because she suffers from a handicap, that is a disservice, because you are robbing her of what she might become on her own.
No doubt Alex was able to take cues from Carol and me. Given her young age, we never broached the seriousness of her disease with Alex, but I’m sure we inadvertently gave hints. By then I was exploring the subject, preparing myself, using the right people to help me, not unlike the way Alex used her dolls. I kidded myself a lot, too, reaching a little further into that abyss each time, but never truly admitting what I was up to. On the more obvious level, I became a little more curious with Tom Dolan and the other specialists I met. More subtly, I closely observed other cystic fibrosis parents—for example, those I encountered at trustee meetings.
We parents followed something of a conversational code there. Those trustees who had already lost their sick children could safely ask one another, “How’s the family?” “How’s everything at home?”—more or less like the lucky ones who had no CF kids. But for those of us with sick children, there was a dilemma. We did not want to charge in with “How’re the kids?” because the answer might well be that a child was very sick and dying. I learned, from the way some scarred old hands approached the subject with me, to offer openings that were not leading. For example, “How old are your kids now?” or, “What grade are your children in this year?” Parents could then answer only the literal question, or, if they wanted, expand their reply and tell how their CF kids were doing.
I studied most closely the parents who had already lost children, examining them with morbid fascination. How do they do it? I asked myself. How are they able to go on? Even: Why do they go on? I wasn’t sure I could. I wasn’t sure I would want to if my child died. That attitude was a form of protection, too. Once you stopped thinking that way, once you decided that, yes, you could manage, then you were admitting a hard truth. So long as I thought that I could not cope, that I could not survive if Alex died, I could protect myself from admitting that Alex conceivably might die. Once I began to acknowledge that maybe I really could go on, as so many of my fellow trustees had, then I was likewise admitting to myself that Alex really could die.
Together, Carol and I protected ourselves—almost instinctively, I believe. We are, both of us, fairly candid people, but I search my memory now, and not once during those years without crisis do I ever recall the two of us sitting down and seriously discussing the worst possibilities ahead—that Alex would grow sicker and die. I knew Carol knew that; Carol knew I knew. To speculate would only have been masochistic. Likewise, Carol never once took it out on me that I could often avoid the task of therapy—and the dreadful responsibility—whenever I traveled. Nor did I—much as she deserved it—make a big deal out of thanking Carol for the greater burden she had to carry most days. No, as it would have been pointless to dwell on death, it would have been ignoble to complain about the disease—because, really, that would have been complaining about Alex.
There were sad, telling episodes involving only myself and Alex that Carol never was aware of until she read the first draft of this book. And, likewise, Carol experienced moments of anguish and despair with Alex that I never knew of until now, when she recounted them to me for this book. One of the dearest—and most natural—things about child raising is when one parent can tell the other what little thing the child did each day. But somehow we sensed when it was best to deny each other that with Alex.
Somehow we understood that all sharing might not be good. After all, Alex was dying because of genes we shared. Carol and I sensed that talking about many things could strain the fragile links, already pulled so taut, as they are in every cystic fibrosis family. The trick, I suppose, was to avoid the truth just enough, and to escape just enough, but always to know that the avoidance and the escape were but temporary illusions to assure that Alex be permanent—permanent whether she was alive or dead.
Chapter 9
By 1975, a year after the pseudomonas was first diagnosed, I was well past the point of merely dealing with the possibility of Alex’s death. I was carefully preparing myself for that. Shortly after her fourth birthday, I wrote this in the diary I kept for both children:
“Anyway, Alex may die before too long. This is so. I cannot bring myself to talk to Carol about this, though. It will only frighten us both more if we make the topic an official agenda item. But I must be very organized, for Alex, for us all. We must give her everything in life we can, and yet we must never make the giving more ostentatious than the life itself. Don’t turn her life into a shopping list! And if she dies, if she must die, please, never waver with doubts about Heaven. She must always have a solid belief in the beyond. Already she talks about it so. She wants me to support her faith in that, as sure as Chris would like me to guarantee him that his Yankees will definitely, absolutely be in the World Series.”
Still, we tried to give Alex as much as we could within the context of our existence. For instance, one time I took the whole family with me to Los Angeles when I went out on an assignment for Sports Illustrated. It was the depth of winter, and TWA had one of those deals going where they practically paid you to bring your family. Still, I probably wouldn’t have lugged us all out there if it hadn’t been for Alex. It was, no doubt, going to be her best chance to see California.
We had a fine time, too. My youngest brother Gill lives in Los Angeles, where he is a lawyer, so we had a home base there. Gill even got Alex invited to a neighborhood children’s party, and as soon as her initial shyness departed she had such a dandy time that the rest of us just left her there. Gill took Chris to a baseball clinic the Dodgers were putting on, and Carol and I took a drive to see some sights.
In the next few years, as the CF worsened, Alex grew self-conscious about her appearance when she met new kids, but at this point she was quickly at ease with strange children. I suspect that had a lot to do with the fact that the visits to the clinic and hospital forced her to deal with strangers—children and grown-ups—regularly. Besides, she just plain liked people. By the time we came to pick Alex up from the party, she said she had so many new friends that she thought maybe we ought to move to California; or, at least, she could commute out there to parties. “I could stay with Gill,” she said. “He doesn’t have any little children, so I think he’d like it. And maybe you could pay him some money, too.”
Even better than the party, though, was our motel, a Holiday Inn. Wherever you are in the world now, kids love the motels they stay in more than the Official Attractions they have come to see. Alex and Chris certainly did.
We had a terrific time. But Carol and I were determined that everybody—read Alex—would see the Pacific Ocean. Now, for a six year old—for most people of any age—an ocean is an ocean is an ocean; but we were hell-bent on Alex seeing the Pacific Ocean in her lifetime. Isn’t it funny the things you think must be important? So, even though it was late in the day and all of us were tired and all everybody really wanted was to get a hamburger and go to a movie, Carol and I were resolved to fight our way to Santa Monica to view the Pacific Ocean—and to damn well appreciate it.
I drove that Hertz car like a bat out of hell, weaving in and out of traffic, down Wilshire, bound for Santa Monica. And, wouldn’t you know it, a million-to-one chance, the car radio announced that atmospheric conditions at the moment would give L.A. its finest Pacific sunset in many years. I went heavier on the accelerator and the imagery. Not only were we going to see the sun set over the Pacific, we were going to see a better sunset than even Hollywood could make.
Terrific. The only thing was that Alex didn’t care at all and neither did Chris. At that moment in time two things they had absolutely no interest in whatsoever were the Pacific Ocean, and any sunset. As a matter of fact, even as we neared Santa Monica, even as I came on like Balboa about the glories we were about see, Chris and Alex started screaming at us and squabbling with each other. Just west of the San Diego Freeway they all but came
to blows.
“I want a Coke.”
“Why are we going out here?”
“I thought you said we could see a movie.”
“Get over to your side.”
“I’m not even going to look at the stupid ocean.”
And so forth.
It was all I could do, in my utter conviction of knowing what was best for her, not to turn around and scream, “Damnit, Alex, you are dying, and so I’m going to show you the Pacific Ocean.”
We did finally reach the Ocean Highway at almost the exact moment that winter’s early night curtain fell. If you strained you could see the last visible rays of the sun forming a sliver of light on the water. And, not leaving bad enough alone, I then turned the car north, and drove up to Malibu, where, in the pitch dark, Alex could get an even better view of an ocean she could not see.
Finally, duty done, we had a nice dinner and saw a movie that Alex enjoyed as much as anything on the whole trip, though she could have seen the same film back home in Westport. Still, if you woke me up in the middle of the night and asked me to name the things Alex did in her life, I would probably mention that she saw a sunset over the Pacific Ocean at the very top of the list.
But then, maybe I—we all—survived because however impossible, however appalling it was that our child was dying, I could sometimes still see the whimsy that forever cloaks the pain and the hopelessness of life.
Alex was never all sadness. What made her illness especially difficult was that she was such a happy child, that she produced so much joy for those around her. And, sick as she was, she had a wonderful capacity to rise to the special treat. Best of all were the few Broadway shows she saw—Annie was her favorite. She also went to the Rockettes and an Oriole-Yankee game, to the top of the Empire State Building, and out to the Statue of Liberty. She saw the dinosaurs at the Museum of Natural History, the Hayden Planetarium, and the Nutcracker ballet at Christmastime. Every year, when my friend Richard Dwyer, the star of the Ice Follies, would come into New Haven, he would get us front-row seats and then give us a backstage tour. Alex saw the Tall Ships enter New York harbor on July 4, 1976, and she met Governor Ella Grasso and Jimmy Connors when she was the poster child for the Connecticut Cystic Fibrosis Foundation Chapter. She and Governor Grasso gave out the awards at the Aetna World Cup, a tennis tournament that helped benefit the Foundation. It was an election year, and Governor Grasso stayed very close to Alex. Alex liked Governor Grasso, too, because we told her that she was the first woman in the United States ever to be elected governor on her own. Governor Grasso wore a bright cherry red pants suit. Alex was in pigtails with a pink dress—pink was, usually, her favorite color—and long white socks and patent leather shoes. I have all that on home movies. And Alex was dead in two years and Governor Grasso in three.