by Frank Deford
Carol and I never did know what was right. Can you imagine how you would feel, leaving your sick kid behind in a hospital, while she begs you to stay? But we knew that Alex would have to spend many days and many nights in a hospital for the rest of her life, and I don’t believe that she would have adjusted so well to that if she knew that Mommy or Daddy was going to be there every night. In a way, she had to establish her own independent existence in that hospital ward.
All hospitals have strict rules about healthy children visiting their siblings or friends, but we were allowed to bring Chris to see Alex on Sundays, and that was always the high point of her stays. “Oh, Chrish!” she would call out, and her face would light up and her cheeks bloom. Usually she would want to introduce him—show him off—to some new friend she had made. She was so proud of him. Never once in Alex’s life, no matter how angry or frustrated she might get, did she wish cystic fibrosis on her brother or cry out that it was unfair that she had it, and he didn’t.
Nobody really knows how much psychological effect this disease has on healthy siblings. Obviously, as they gain maturity, most of them will feel some guilt that the angel of death somehow passed by their bedroom door, even as it struck the one just down the hall. Cystic fibrosis scars everyone in a family, one way or another. There were also times when Chris whined that Alex got away with murder and drew more of our love and attention because she was sick—a few times, even, when he roughed her up a little in his anger—but probably he was right, and surely every brother acts like that occasionally with a kid sister.
Those were the exceptions, though. Chris was loving and protective with Alex even when he was only five or six, and he would get up weekend mornings when we were trying to sleep late to go downstairs and fix breakfast for himself and his little sister. Just cereal and juice at first, then he added ready-mix pancakes to his culinary repertoire. And no matter what we threatened him with—no TV, no baseball—most every night he would leave his room and go sleep in the same bed with Alex. How could you stay mad at him for that? There in the morning they would be, Chris all curled up under the covers, Alex sprawled outside them. For some reason, she almost always kicked off the covers on her side.
Chris never let himself admit how sick his sister was. I imagined that he knew much more than he let on, but I realized later that he didn’t know as much as I assumed. I had made the mistake of thinking that Chris could be as mature and practical about Alex’s illness as she was. It was always easy to forget how grown-up Alex was about herself.
And yet it was disconcerting. Whereas Alex could deal with the fact that she had an incurable disease, she would absolutely dissolve at the prospect of having another IV stuck in her—especially since she knew she was so skinny that there was so little of her to work with, that the doctors would probably have to try over and over again. Sticking her, jabbing her, hurting her. It was never really the going into the hospital that upset Alex. No, it was going into the hospital and getting a needle. Barbara Arends, Alex’s favorite nurse, told me, “No matter how many times Alex came in, and no matter how good a patient she was, she was never really herself until the IV was in, and she was sure it was in good. The doctor might tell her it was fine, but she wouldn’t necessarily believe him, because she knew better about needles than they did.”
Even I sometimes forgot that Alex was only a little girl. I would be surprised every time when grown-ups would visit Alex in the hospital and how they would be surprised by the candor of her conversations with the doctors who dropped by. And the trouble is, the better a patient you are, the more people start thinking of you as a patient first and whatever else you are—little girl, grown man, whatever—next.
“Please stay over tonight, Daddy.”
“Oh, come on, Alex, you know I can’t.”
“Oh, please, Daddy. I’ll go right to bed, and you can stay up late and read your book. Please.”
“Alex, you know I can’t stay. Now be a good girl.”
Pause. “Well, when you go home, will you ask Mother if she can stay with me tomorrow night?”
And I would go home from that awful place, hating myself, go home to my wife and son, hating them too, I suppose, hating us all that we could be at home, together, healthy, while Alex stayed in the hospital, alone, sick. “Well,” Carol would say, “at least we don’t have to wake up extra early tomorrow and do therapy.” And we would nod lamely at each other, all the more guilty that we did not have to do therapy. And it’s funny, too, but the truth is that a lapse in a routine—any routine, even one you hate—makes you all the more aware of what is missing.
So we would have our breakfast, the three of us, and Alex’s school bus would come by. At first, when she went into the hospital, the bus would sort of pause outside our house—waiting for a moment, almost like some great horse nodding in anticipation—as if Alex must just be late, and would be rushing out the door in another moment. But then, as the days went by, the bus wouldn’t stop and wait at all. It would just roar by, never even slowing down.
For Alex, I think, the worst part of the hospital was simply that she had to spend time there—away. It was one final, obvious certification that she was different. If it had only been the pain—even the IV needles—she could have handled that. But for her the great fear was wondering how others would react to her.
This happened when Alex was six and a half, when I told her some friends of ours were coming out from New York to have dinner.
“Can I dress up in my favorites?”
“Of course you can. We want you to look great.”
“Neat-ooo!” She started to skip away, happily. But then she stopped. “Maybe I better stay in my room.”
“Why?”
“Well, do they know about my disease, Daddy?”
“Sure they do.”
“Okay, then they won’t laugh at me when I cough, will they?”
Nonetheless, from all that I know, there was only one occasion in which Alex was treated cruelly, singled out as some freak. I checked this out with Christian regularly, too, and I asked Wendy and Aimee about it after Alex died; they all assured me that nobody ever treated Alex for her differences, that if anybody had tried, the other kids wouldn’t have tolerated it.
But there was this one time. As Alex got sicker and her clubbed fingers grew paler and more bulbous from the lack of oxygen, she became more self-conscious about them, sure that everybody was staring. And, of course, she was probably right. Clubbed fingers really are different, not like coughing or being skinny.
One day when a new family moved into our neighborhood some of the veteran kids ran over to fill the newcomers in on the territory. By the time Alex met the new kids, they had heard all about her, the little girl down on the corner who had this cystic fibrosis disease. What’s that? Well, she coughs, but don’t worry, she doesn’t give you germs, but she has to take all these medicines all the time, and she’s always going to the hospital, and she’s skinny and you should see these weirdo funny fingers she has.
Then, when Alex dropped over, probably not looking nearly as peculiar as the new kids figured a “disease person” would look, one of them said, “Let me see your funny fingers.”
And Alex ran right home, crying. I was there. She fell into my arms. “They told, Daddy! They told the new kids about my fingers.” And I let her cry all she wanted. She sobbed for a long time, too, and didn’t want to go back outside. I tried to tell her something philosophical, but, luckily, I stopped in time, because I realized how empty that would sound. A child who is different, who has just been singled out and hurt for being different, is beyond fancy philosophy. Instead, we just hugged some more.
I don’t remember Alex mentioning her fingers again, and, as far as I know, there never was another incident. But sometime after she died, her grown-up friend Cyd Slotoroff, who played the guitar and sang for the kids in the hospital, told me that once she and Alex had been talking about secrets. Alex said she had a secret. First she told Cyd about that
episode with the new neighbors and about how she had been betrayed.
“Is that your secret?” Cyd asked.
“No, that’s not my secret,” Alex said. “Daddy knew about that.”
“So what’s your secret?”
Alex dropped her eyes. She looked at her fingers. Then she balled both her hands up into fists. “Sometimes I do this, Cyd. I do this, so I won’t have to see my own fingers.”
“Yes,” Cyd said.
“That’s my secret.”
Chapter 12
Cystic fibrosis kills children, and painfully. How much worse could a thing be that kills children? But cystic fibrosis is worse. It can threaten the whole family in many ways, destroy the hearts and the faith of all its members. Whenever I was away from home, traveling on business, I felt as if some great burden had been lifted from me. And yet, I always felt guilty for leaving home—never mind that I had to, that it was my job, our livelihood. Whenever I returned, I could see the weariness in Carol, the deeper anguish in her eyes.
Directly because of this, the autumn Alex was four Carol returned to school at a local community college, where she studied to become a registered nurse. I certainly didn’t tell her at the time, but I don’t think she especially wanted to be a nurse. Instead, I think that field of study best let her justify her decision to go back to college. She knew she would have felt guilty if she had just taken a normal liberal arts curriculum—some mere scholastic excuse to escape the house and the growing pall of the disease. But any medical training she received was bound to come in handy with Alex. So, nursing.
Still, I knew; however much the schooling might help Carol treat Alex, that was secondary. She needed something that would require her to leave the house, force her to concentrate on something—anything—other than cystic fibrosis. And sure enough, while the nursing program was a tiring regimen, it breathed new spirit into Carol.
Unfortunately, just as she started her second year Alex had to go back into the hospital, so Carol had to withdraw from college. The disease had expanded once more, to fill an even larger place in Alex’s life, in all our lives. For the first time, regular hospitalization was a fact, the conclusions unavoidable. Although we did not appreciate it at the time, that year was the worst experience Chris ever had in school. We probably failed him in many ways during that period. We’ll never know how much damage the whole experience did to him.
By the next fall, 1977, Carol had grown even more desperate. Cystic fibrosis was encircling her. She told me that she had to go back to college, to something that took her mind and body alike away from the disease. “I can’t just go get a job in a store, Frank,” she said. “that wouldn’t be enough to put CF out of my mind. You’re lucky. When you write, you can concentrate, and—and—”
“I know.”
“That’s what I need. Something I really have to focus on, something really demanding. So I have to forget. At least some.”
She found a special liberal education program at Sarah Lawrence College, and it seemed perfect. Intellectually, it was far more difficult than the nursing school, but it was nowhere near as unbending in its scheduling demands. If some crisis came up with Alex, Carol could adjust and still find a way eventually to catch up back at school. She was just thrilled when Sarah Lawrence accepted her.
Carol was still almost a full two years short of a bachelor’s degree. She had given up education after junior college to go to New York, and she was living there, breaking in as a fashion model, when we met again, three years after that first, desultory encounter in college. Obviously, she had grown apace; she had her wits about her. She was no longer a mere college girl, but a grown woman of sagacity and judgment. In other words, she bought my act this time around.
As draining as it was for Carol to be so responsible for Alex, she was fortunate in one way. As a writer, I have a more flexible schedule and I work at home a lot, so when I was not traveling, I was there to help with everyday responsibilities. But there is an awful, ironic hook that comes with a disease like cystic fibrosis. No matter how much I was around, Carol and I discovered that we could not depend upon one another.
Such a tragedy as ours does not bring a family together the way it’s supposed to in the movies and the uplift books. The problem was that each of us needed to draw the same consolation from each other. Carol told me not long ago that support comes in many subtle forms, and that she always knew somehow I was there with her; but great as any love may be, it is never enough to turn the trick by itself. How, in desperation—guilty, angry, frustrated, scared—how could I turn for solace to my wife, the mother of my child, when she was the mother of the child dying, and going through all the same as I, wanting the same thing I did? How do you give the very thing you need more of yourself? Believe me, I’m not just letting myself off easy when I say that it is much more complicated a matter than mere selfishness.
Whatever happened, I felt that I was failing Carol, that I was unable to help her and comfort her when she needed me most. But, in the same way, I resented that she could not help me when I wanted help too—even though I understood why.
When our child was dying—when she was dying because of the genes we passed on to her—no matter how irrational it may have been to flagellate ourselves, there were times, in the mustiest corners of self-awareness, when we had to. Had to. I could not forgive Carol any more than I could forgive myself. After all, we quickly enough assume credit for the genes that make any of our children attractive and bright—she takes after me. It’s only human nature, then, that we also accept the responsibility when we pass on genes of destruction. No, I did not really kill my child, and it profits nothing to dwell on that, but neither can I avoid the ultimate irony that simultaneously I created a life and a death, together.
I came to hate it—hate her, I suppose—when Carol would tell me how something else, something new, had gone wrong with Alex, how something worse had been discovered. Don’t tell me, I was screaming inside. I don’t want to be responsible. I don’t want to be anybody’s father. And Carol would get just as furious at me, because I would not respond as she wanted me to; I wouldn’t evidence enough concern or distress.
But it was almost a studied pose I had chosen. I knew how bad the whole business was. I knew where Alex was heading. I knew how much hope it was emotionally safe for me to assume. So when Carol would tell me more bad news, what did it matter, really? If not today, then tomorrow. I felt that if I downplayed sad new developments it would be better for us both than if I merely echoed Carol’s despair. But why should I be surprised when she got mad at me for that? You see, there were also times when I was the one especially depressed about Alex, and if Carol did not seem to me properly sorrowful, I would loathe her for her callousness or envy her the ability to escape for the moment. There was no way to win. Grief was bad company, and optimism was no antidote.
No wonder, then, that so many cystic fibrosis families come apart at the seams. The process is often speeded up when the father, in extreme machismo, refuses to help with treatment, refuses even to acknowledge that his child is different, sick, weak, and dying with a disease he passed on. In a survey of CF families, the constant home treatment program was cited as the most difficult aspect of the disease. Second was the fact that the burden of care fell on one parent. Invariably, of course, that was the mother. And then, following in order, families mentioned the financial problems, the specter of death, the pressure from unfeeling relatives, the shame and disgrace of the disease’s hereditary quality, and—full circle—the added fear of pregnancy, of giving birth to another dying child.
Ultimately, whether in my dealings with Carol, with Alex herself, with anyone involved with the disease—or with myself, for that matter—the major emotion pressing upon me was the feeling of inadequacy. Of course, I rationally understood that I could not cure my child, but day upon day, to work with her, to help her, to hold out hope for her, and yet still to see her deteriorate before my eyes—that was an experience that sugge
sted the hopelessness of life as much as anything I can imagine. The most lost of lost causes is the one for which you must continue to apply effort even when you know it is pointless. And I could neither satisfactorily console my wife nor guide my healthy son through this awful thicket. And I could not explain how I felt, because of the shame, nor could I ever escape, because of the guilt. Even when I went to the hospital I felt bad, because there I would encounter all those wonderful volunteers who worked selflessly, not for obvious personal reasons, as I did.
So often I think I would have cracked, except for Alex herself and her example. People told me how terrific or brave or noble I was, and I hated them for that, even as I did appreciate their caring. But me? I am not dying. I am not sick. I am not in pain. It is my child to whom I bequeathed these things. I really don’t think it’s possible to be a good parent in such a situation. All you can hope to do is to manage, to survive. I’m a survivor; that’s all. The only hero, ever, was Alex. And the older she got, the more her prospects dimmed, the finer and stronger a human being she became.
Chapter 13
Carol and I were fortunate in one regard, because my company, Time Inc., has a bountiful medical plan. Out of pocket, after being reimbursed by insurance, Alex’s disease probably cost us about a thousand dollars a year, but nothing near what it could have, what it costs other CF families who are unable to obtain sufficient medical insurance. I am aware of young adults with the disease whose expenses may approach a thousand dollars a day when they must be hospitalized. But we were among the lucky families.
Alex could print capital letters by kindergarten. I have a sheet of paper from February of that year with the names of an interesting variety of foodstuffs carefully carved out, alphabetically, in red pencil—starting with apple and banana and continuing right on through upside-down cake and zwieback. But her mind was really starting to race, and Alex was often talking and “imaginating” much too fast for her careful letter making to keep up. Ironically—but perhaps not surprisingly—Alex’s intellect grew stronger as she started going into the hospital on a regular basis. Part of that was surely because she was constantly around adults, but I also suspect that the hospital heightened her own sense of the time left to her. Mrs. Patricia Beasley, who was Alex’s last teacher, in the third grade, told me after Alex died, “I could always detect a certain urgency with Alex. She was so anxious to try and catch up. There was such an impatience to her, and it took me awhile to understand that mostly she was just frustrated that this disease interfered with the rest of her life.”
