Alex Read online

  “I have to go?”

  “Yes, Princess, you have to. Don’t get mad at me.”

  She nodded then, and came over and sat in my lap. “Can I tell you something then?”

  “Sure.”

  “But I don’t think you’ll like it.”

  “Well, try me.”

  “Okay. I’ve stopped praying, Daddy. I mean, I’ve stopped praying for a cure … a cure for my disease.”

  I didn’t protest. I just shook my head in understanding. “I can see why.”

  “You can?”

  “Sure. You’re always way down in the dumps whenever you have to go back in the hospital. It’s tough for you now. I know. Is it okay with you if I keep on praying?”

  She hugged me and said that was all right. We held each other for a long time, then, and when I cried, I was quick to whisper to her that I was just so sad that she had to leave her school and go back into the hospital. Finally, when she pulled away from me, she said, “Daddy, do you remember that time we talked about the worst disease of all?”

  “Yeah, I remember.”

  “It’s cystic fibrosis, isn’t it?”

  “Yeah, I guess it is,” I said.

  “I thought so,” Alex said, and we both nodded and cried some more. “See, Daddy, I’d pray if I could see something, just something, but”—and just then she happened to glance down at her fingers gesticulating before her. “Oh, no, Daddy, look at my fingers now. They’re even worser.”

  I took them and kissed them and held them, so that she wouldn’t have to see them and be reminded.

  “You know Crissy?” she asked after awhile.

  “You mean the other little girl in the hospital with CF?”

  “Yeah.”

  “Sure, I remember Crissy. She was nice.”

  “Do you think she’ll be in the hospital this time too?”

  “Oh, I don’t know, Alex. I just don’t know.”

  “I think she probably will be,” Alex said. “She’s got this disease real bad too. Me and Crissy have it worse, don’t we? She has real bad fingers too.”

  “Yeah, I know,” I said. “Some kids with CF don’t have it so bad. Some of them really just have problems with their stomachs.”

  Alex’s eyes widened at that. I guess I’d never told her that before. “Oh, they’re so lucky, Daddy,” she said. “They’re so lucky.”

  “Yeah,” I said, agreeing that it sure was lucky just to be a little bit incurable.

  “But I’ll die,” Alex said. It was the first time I had ever heard her say anything like that. And it was a statement, too. She had obviously worked this out so that she would be presenting the matter, not asking me about it.

  “Well, sure,” I said, as casual as I could be myself. I’d been prepared for this for a long time. “You’ll die sometime. But I’ll die too. If there’s one thing we all do, it’s die.”

  “But you’ll be real old,” she said.

  “Not necessarily. I mean, I could die in an accident anytime.”

  Alex threw her arms around my neck. “Oh, my little Daddy, that would be so unfair.”

  “Unfair?” I said. Unfair is just what she said.

  “You don’t have a disease, Daddy. You shouldn’t have to die till you’re real old.” And then she hugged me as hard as she could.

  Chapter 19

  Alex already understood that her time was fading, and there was much she must do for herself. Late in September, just before her lung first collapsed, we had traveled to Baltimore to visit my parents and help celebrate my mother’s birthday. It was a grand family occasion, because my brother Mac, who is Alex’s godfather, was also there with his family, his wife, Zehra, and their little son, Benjie. This was extra special, because Mac was usually abroad. At the time he was a Foreign Service officer, and now he’s with Merrill Lynch’s international division.

  He’s been stationed in the far corners of the world: Jordan, Korea, Argentina, Vietnam; he met Zehra when he was posted to Jidda, Saudi Arabia. She’s Turkish, and Alex was always especially taken by Zehra, who was exotic and sweet. And so on this trip to Baltimore Alex cornered Zehra in her bedroom at my parents’ house, while she was straightening up.

  “Zehra,” Alex said, “I want to ask you something.”

  “Yes, of course, what is it?”

  “Is there a God?”

  Zehra was, to say the least, staggered. Among other things, she’s a Moslem, and the last thing she wanted was to start leading this little Christian astray. “Well, I think so,” Zehra ventured.

  “How do you know?” Alex asked.

  “I don’t know. I just feel sure there is. I talk to Him when I need Him.”

  “You do? How?”

  “You know, Alex: praying.”

  “Oh,” she said. “I do that too. Do you think He’d listen to me?”

  “I think He listens to everybody,” Zehra said, and, nervously, she started puttering about again. Alex sat down on the floor and watched her for a while. Zehra didn’t understand that Alex had carefully selected her for these questions. She was a good friend, and family, and Alex liked her, so she could ask Zehra questions she wouldn’t dare ask Carol or me. After awhile Alex spoke again. “Zehra?”

  “Yes, sweetheart?”

  “How do you die?”

  Zehra stopped her cleaning up and turned directly to Alex. She would deal directly, the best she could. “It’s mostly like going to sleep,” Zehra said. “All of a sudden, though, you aren’t in this house. You’re in God’s house.”

  “Where’s that?”

  “That’s in Heaven.”

  Alex thought about that for a while. “Are there toys there?”

  “Oh, yes, lots and lots.”

  “But it would be lonely without your family, wouldn’t it?” Alex said. There was no doubt from the way she said that, that it would be lonely because she knew she would surely be going first.

  “Oh, no, everyone will be there soon enough,” Zehra said.

  “You too?” Alex said. “Mac and Benjie? Grandmommy and Granddaddy?”

  “Everybody. But before they do get there, you can always look out through a window in Heaven and see everyone down here that you love and you miss.”

  “You can?”

  “Sure you can, Alex. Or otherwise it wouldn’t be Heaven.”

  Alex thought about that for a moment, and then she got up and thanked Zehra and left her there to finish cleaning up.

  Chapter 20

  Unfortunately, the worst two episodes that Alex experienced with young doctors both came in the fall of 1979, when she was so sick that any sort of adversary treatment was simply cruel. The first took place one afternoon in October shortly after her lung collapsed when Tina Crawford happened to be visiting Alex. A particularly officious young doctor brought a bunch of students over to examine Alex. He pointed to the tube in her chest, explaining that the incision of an inch or so had been made while she was under a local anesthetic, and then he declared, “This procedure is not very painful to the patient.” Immediately, he proceeded with his lecture.

  All the years of hearing these cocky young experts talking at her as if she were a body on display, as if a child—a sick child—could not be a real person, welled up in Alex. “Wait!” she suddenly cried out.

  But the doctor ignored her and kept right on with his spiel. “No, wait you,” she said again, louder still, and tugging at his sleeve this time, too.

  He stopped. He had to. Alex had made him stop. And, only then, with a condescending look of annoyance, he turned down to her. “Yes, what is it, dear?”

  “How do you know?” Alex asked.

  “What, dear?”

  “How … do … you … know?”

  “I’m sorry, but—”

  “Have you ever had a big tube stuck in you and then taken out again?”

  “Well, no, I, I—”

  “Then don’t tell me—or them—it doesn’t hurt. Because I don’t like being lied to.”

/>   Tina says some of the students snickered at the doctor, but he only mumbled an apology, laughed it off, and hurried out to find a more pliant child.

  A much worse episode occurred the next month, the day after Thanksgiving. Alex had been back in the hospital for a couple of weeks and was anxiously looking forward to being released. But that morning her lung collapsed again—only nobody in authority would believe her. Nobody would listen to her. She was only a patient; only a child, dying.

  Alex herself knew immediately that her lung had collapsed. After all, the memory of her previous collapse was clear enough—only six weeks past. But the young resident on the floor seemed threatened that an eight-year-old could be usurping his diagnostic responsibility. He told Alex she was wrong, her lung had not collapsed. Not only that, he refused to give her X rays. Fortunately, Carol, accompanied by her mother, arrived that morning for a visit. They listened to Alex and urged the doctor at least to call in Dr. Dolan. He lied to them and told them he had already notified Dr. Dolan, and he would be along in time. No layperson was going to tell him a thing.

  The greatest irony is that when Alex had been released from the hospital the time before, Tom Dolan had carefully explained to Carol what the symptoms of a lung collapse were, so that, if Alex ever did have another, Carol would understand the problem and rush Alex to the hospital. That way she could, as much as possible, avoid great pain. And here Alex was actually in the hospital, in her hospital, describing exactly the symptoms Tom Dolan had explained to Carol, and still the know-it-all resident wouldn’t listen to Alex and wouldn’t listen to Carol.

  It devastated Alex. She was so upset that later that afternoon—still before the resident would let her go for X-rays—Alex called in Claudia Cameron, who helped run the play program in the ward, and dictated her account of the episode. Alex knew that what was happening was wrong, and she damn well wanted it on the record. Claudia took down what Alex told her:

  “I started coughing really, really hard. Then it felt really hard to breathe. I started to cry. Wanda came in and I said, ‘I think I have a collapsed lung.’

  “Then I got up to go to the bathroom and I started to scream. Barbara came. ‘My side hurts,’ I said. I put on nasal prongs to give me oxygen and it made me feel a little better. Then Barbara said, ‘What would you like best, besides your parents?’ I said, ‘I would like a nurse by me.’ Maribeth stayed with me while Barbara checked IVS. It felt comfortable that the nurses were with me. Sue, Wanda, and Maribeth all took turns watching me. I fell asleep. In between my sleep I would cough.

  “After a while my mother and Nana were here, and I started to cry because I was so happy they had come. I took another rest but I coughed some more. My mom started crying because she was unhappy for me.”

  That is how a child feels when she is sick and hurting and they don’t trust her.

  Finally, the obvious could no longer be contradicted, and the resident agreed to let Alex go for X-rays. They revealed exactly what Alex had told everybody six hours before, that her lung had collapsed.

  We were infuriated—all the more because Alex had suffered so needlessly, but the incident did recede rather quickly from her consciousness for the simple reason that the new collapse meant she would have to stay in the hospital longer. Soon, that meant much more to Alex than the suffering and indignity she had been forced to endure on that one day, November 23. She was beginning to think more and more about her death.

  I sat down and wrote a long letter to the head of the department of pediatrics and to the chief of staff of the hospital. I began: “I don’t want anybody’s hide. I don’t want anybody to eat crow.” The damage was done to Alex, and to drag it out, to carry a grudge, would only create an atmosphere that, I was sure, would make it more uncomfortable for her in the hospital. But: attention must be paid. At least if I made known what had happened, then maybe it would be less likely to happen again. Maybe the next young man who wants to be a doctor will listen to a child.

  Chapter 21

  As bad as that occasion was, there was to be an even more heartbreaking incident a few days later. How Alex survived this emotionally is still beyond me.

  The tubes had come out of Alex’s chest after another week or so, and she was finally scheduled to go home on December 3. Carol was at college that day, so I was going to pick Alex up around lunchtime and drive her back to Westport. The night before, when I had been up visiting, she had been especially excited. She even wanted to know if we could drop by her school for a few minutes as soon as we got home so she could say hi to everybody. As weak as she had grown, Alex was more stir crazy than ever before; she’d been in the hospital for about six of the last eight weeks, all under more confining conditions that she was used to; besides, she hurt and she didn’t want to die in the hospital.

  In midmorning, I got a call from Yale-New Haven. Alex’s lung had gone again. I rushed up, and when I got to her room we only hugged and held each other. There was nothing to say. Finally, she pulled back and looked at me. I had never seen such utter despair upon her face. Finally, this is what she said: “Daddy, why does God hate me?”

  Now that I was there, they were ready to make the chest incision and insert the tube. The first time Alex had a collapsed lung—a pneumothorax, it was called—she had been given a large dosage of painkiller, and it really knocked her out; she slept for hours and was groggy many more. Thereafter, even though she was so frightened of pain, she seemed all the more frightened that she might never wake up, and so she told the doctors only to give her a local.

  We did not know it at the time, but this would be the last occasion when Alex would—could—have the tubes inserted. Carol and I, and Alex, feared that it would keep happening, again and again, the final cruel indignity, but what we did not know was that, after this time, Tom Dolan doubted that her body could stand the trauma of another cut. There was so little left of her.

  And so I carried Alex into her treatment room. By then she had prepared herself fairly well, but as soon as she saw that stark table where she was to lie and receive her shot and her incision, she stiffened and was the little girl again. “No, not yet! Not yet!” she cried, and she clung to me as tight as ever she had.

  I remember noticing that both nurses there turned away from us at that moment, because, for all they might see, day after day in a hospital, there was such an awful intimacy to Alex’s gesture that they could not bear to intrude on us. I only held Alex and tried to comfort her more.

  And, in time, when she had composed herself, she said, “All right. I’m ready now.” And so she was.

  So I started to lay her down where they would cut her open. And in that moment, I could not hold back any longer; one tear fell from all those welling in my eyes. And Alex saw it, saw my face as I bent to put her down. Softer, but urgently, she cried out, “Wait!” We all thought she was only delaying the operation again, but instead, so gently, so dearly, she reached up, and with an angel’s touch, swept the tear from my face.

  I will never know such sweetness again in all my life.

  “Oh, my little Daddy, I’m so sorry,” is what she said.

  One nurse turned and bowed her head and began to sob. The other could not even stay in the room. She ran off to compose herself. It was some time before we could get going again.

  First, they spread pumpkin-colored soap over where Alex was to be cut. I held her hand. Then they brought out the needle, a huge horse needle. I squeezed her hand, and she squeezed mine back, harder, harder, as they jammed it deeper into her. She cried. And then they started to cut her. Can you imagine what it is like to be with your child when they are cutting open her chest?

  And all for nothing, too. I knew that. It wasn’t really going to do any good. It wasn’t going to save her. It might not even help her. All we knew for sure was that it would hurt her. But it had to be done. It had to be done, so I held my baby’s hand, and the doctor cut through the orange goo as if she were a jack-o’-lantern being sliced up for Halloween, and
then he brushed away the blood, stuck a tube in her, sat back and said, “Okay.”

  “It’s over,” I said.

  Alex said, “Thank you, Daddy.”

  “Alex wasn’t that specific about finding out what was happening to her until after the chest tubes,” Barbara told me later. But at that point she seemed to grasp the utter hopelessness of her plight. And yet, how unfair it was—one more difference—that as she could not live life like the rest of us, neither could she even talk of death to those closest to her. You see, in many ways she felt she had to protect us—her little Daddy, her beloved mother and brother—more than we her. There were a couple of occasions, after some new and horrible setback, when she directly advised Tom Dolan, “Now, don’t tell my mother, because she worries so much.”

  One day Carol was with Alex, and a whole bunch of the other kids started coming into her room. She had the lung tube in her and she was especially immobile, so Nancy and Claudia from Child Life had let Alex have the record player in her room. She was playing one of her favorite records, the one Marlo Thomas did for kids. A book comes with the record so you can get all the words right. The other children started coming in and they all began singing—happily shout-singing, the way kids do—and all of a sudden Carol realized they were singing the best song on the record, “Free to Be … You and Me,” and Carol couldn’t take that. She remembered, “When they find a cure, I’ll be free, like everyone else.” And she had to bolt from the room, crying. Carol could stand anything but that: free.

  Alex watched her go. Alex knew. Barbara recalls episodes when Carol was especially upset and morose that Alex would purposely act her worst, very fresh and bratty, to divert her mother’s emotions—Carol would then grow annoyed at Alex, rather than sad. One time Barbara remembers that Carol was fixing Alex’s hair, fighting to hold back the tears as she made her dying child pretty, and Alex suddenly started making such a nuisance of herself that Carol finally got so irritated she said, “Alex, if you don’t stop acting like this, I’m going to leave this room.”