Sixteen and Dying

by Lurlene McDaniel

  “I had to see you.”

  “No!” The word sounded final and tortured. “I’m hideous, I’m sick. Go away!”

  “Please, young man,” Mrs. Hankins said. “You’re upsetting her.”

  Morgan gently took hold of both Anne’s wrists. Even though she tried to hide, he saw her face. She looked thin and gaunt. “I let you look at me when that bronc rearranged my face last summer.”

  Slowly, Anne raised her eyes to meet his. She could hardly keep from weeping. She wanted to run and hide, and yet she wanted to throw her arms around him. He looked so wonderful, so healthy.

  “I’ve changed, haven’t I?” Anne asked, her voice quivering.

  She’d changed horribly, he thought, but he knew what courage it had taken for her to face him. “What’s wrong, Anne? We’re all worried about you.”

  “I’m ill.” She held her head higher now, almost defiantly.

  “Are you allowing him to stay?” Mrs. Hankins asked.

  The damage was done. There was no use trying to hide the truth from Morgan any longer. “It’s all right, Mrs. Hankins. He can stay here.”

  “Anne tires easily,” Mrs. Hankins warned. “I’ll be in the kitchen, Anne.”

  “I want to know what’s wrong with you,” Morgan insisted gently once he and Anne were alone. “Please tell me. Maybe I can help.”

  She gestured to one of the lesions. “This is Kaposi’s sarcoma. A type of skin cancer.”

  His gaze barely brushed over the ugly lesions. “Skin cancer is the reason you left so suddenly last summer? I want to know why you went without even saying good-bye to me.”

  “You should have phoned. We could have discussed it over the phone.”

  “Too impersonal.”

  “You should have told me you were coming.”

  “I was afraid you wouldn’t see me.”

  “You would have been right.” She sighed and nervously brushed her hand through her wispy hair. If only she could look pretty again.

  “You’ve changed the subject,” he said. “Tell me what’s going on.”

  She hated to, feared the look of revulsion that would cross his face. “I have AIDS.” She stared straight at him, waiting for him to bolt toward the door.

  He felt as if he’d been slammed on the ground from the back of a bucking horse. He didn’t know a lot about AIDS, but he knew it was fatal. “Is that what you’ve been afraid to tell me?”

  “Aren’t you afraid?” She couldn’t believe he was enlightened enough not to be fearful.

  Morgan shook his head. “I’m one person who isn’t afraid.”

  It was her turn to be surprised. “Do you know someone with AIDS? Do you have AIDS?”

  No.

  “Then why—”

  He folded his hands together and silenced her with an anguished look. Quietly, he asked, “Have you ever heard of the disease Huntington’s chorea?”

  Seventeen

  “HUNTINGTON’S CHOREA?” ANNE searched her memory for the meaning of the name. “No, I haven’t. Tell me about it.”

  “It’s a genetic disorder. It gets passed along through families. The word ‘chorea’ comes from a word that means dance.” Morgan gave a bitter chuckle. “It’s a dance, all right. A victim has no control over his movements. For no reason, he jerks spasmodically. He gets worse and worse until he can’t walk. Then his muscles get stiff and rigid. All the while, the mind is affected too, and the victim turns paranoid. Eventually, the person becomes totally disabled, no more than a living vegetable. And finally—sometimes after years of suffering—he dies of choking to death, or from pneumonia, or heart failure or a blood clot. The folk singer Woody Guthrie died of it.”

  Anne blinked, feeling the anguish of Morgan’s description. “Why are you telling me this?”

  “Do you remember when I told you that my father was dead?” Anne nodded. “That’s not true,” he said. “He’s in an institution in St. Louis that specializes in caring for people with Huntington’s.”

  “Oh, Morgan …” Anne felt tears well in her eyes.

  “It’s simpler to say he’s dead.… I mean, he may as well be. He’s totally disabled and out of it. I was eight when his symptoms first started, but I still remember what it was like—what he turned into. Up till then, my daddy was a big, fun-loving cowboy. One day, his body started making weird twitching motions. He started falling down while walking. At first, the doctor thought he’d had a seizure, so he put him on medicine. It didn’t help.

  “Then, gradually, Dad turned mean and crazy. He chased Mom with a butcher knife one time. Another time, he drove the car right through the side of the house. Finally, after five years of living with this wild, spastic lunatic, Mom and Aunt Maggie decided to lock him away. That’s when another group of doctors realized he had Huntington’s disease.”

  “Is that why your mom left?”

  “When the diagnosis finally came in, she was burned out. Like I told you, Mom was once a pretty party girl. She never signed on for Huntington’s.”

  “But she had you to care for.”

  “I was better off with Aunt Maggie and Uncle Don. I know it’s hard to believe, but I understood why my mom left, and I didn’t hold it against her. I still don’t and I never will. I’ve made my peace with that.”

  Anne could hardly absorb why he wouldn’t have resented her for leaving him. “But once your father was being cared for, the two of you could have made it.”

  “I’m not so sure.” Morgan stared down at his hands. “Huntington’s doesn’t strike when people are real young—people get it when they’re in their thirties, or even their fifties. A person—a blood relative, that is—has a fifty-fifty chance of getting it if the gene for it is already in the family.”

  His voice had dropped so low that Anne had to lean forward to catch the last. A silence fell in the room, and she waited for him to resume. He didn’t, but in the lengthening silence, she caught the drift of what he’d left unsaid. The weight of it took the breath from her. “Your Aunt Maggie could get it,” Anne said slowly. “Or you.”

  “That’s right—either one of us. We’re walking time bombs. I know Mom couldn’t have faced it again. It was easier for her to walk away from the pain of the past and make sure she didn’t have to face it again.”

  Anne couldn’t understand such a solution, but she didn’t say anything. She knew his aunt and uncle truly cared for him. “Isn’t there any way to know if you’ll get it or not?”

  He shrugged and didn’t answer. “When Aunt Maggie took my daddy to that nursing home, the doctors explained that it could take him upward of twenty years to die, because in other ways, he was in good health. Twenty years of existing in hell, while his brain slowly turns to jelly. Aunt Maggie and Mom got out of there as fast as they could.”

  “You haven’t seen him in all these years?”

  “No, and I don’t want to.” His tone sounded so final. Anne wanted to tell him that if she could see her mother again, even for a minute, she wouldn’t care about the circumstances, but she let Morgan continue. “I was twelve when Dad was institutionalized, and I’ve lived these past six years knowing that it might happen to me … and that there’s nothing medical science can do to stop it. There’s no cure.”

  “I overheard your uncle say you had a death wish. At least, now I understand why.”

  “Maybe he’s right. I guess it’s easier to take chances with my life, to feel like I’m in control somehow, than to sit and wait for Huntington’s chorea to drop in on me.”

  Anne comprehended his reasoning perfectly. Hadn’t that been what she’d done by choosing not to begin AZT treatments when she could have, but instead going to the ranch? “It may not happen to you,” Anne suggested. “You might not be doomed, and you should try not to ruin your life.”

  “I’ve got a possible twenty-year wait before I find out, and I don’t want to be tested and know for sure. What kind of life is that? What kind of plans can a person make with that hanging over his head?”


  “Oh, Morgan—”

  “Don’t feel sorry for me.” He glanced at her sharply. His expression softened. “I guess I shouldn’t complain so. You’re the one who’s worse off. Anne, you should have said something to me before you left—I care about you, about what’s happening to you.”

  “I didn’t know what to say,” she replied. “Do you think it’s easy to tell someone such a dreadful thing? I wasn’t sure how you’d take it. I didn’t know about your problem. You didn’t confide in me either.”

  “I guess you’re right,” he said. “We were both afraid.”

  “How did you get here anyway?” she asked, changing the subject.

  “I sold the saddle.” She nodded in understanding. “I never did find a horse I liked as well as the bay. Maybe something will come in off the range in the spring—a colt, something younger, easier to work with … not so spooky.”

  Anne remembered the beautiful Colorado mountains and longed for her lost summer. If only … “I hope so.”

  Morgan tried to hold on to his new feelings. He felt comfortable being with Anne. He’d never told anyone his secret until now. The intense empathy on her face touched him. Even in her pain, she could feel compassion and concern for him. He wanted to hold her, and yet, he wasn’t sure she’d let him. He wasn’t afraid of her AIDS. He didn’t even care how she’d contracted it. All that mattered was being with her.

  Feeling lost for words, he glanced around her room. It looked homey and peaceful, filled with books and posters, a stereo, and stacks of CDs. “I thought a rich girl like you would have all kinds of maids and servants,” he remarked.

  “You keep accusing me of being wealthy,” Anne said, baffled. “Why is that?” My dad and I aren’t rolling in money.”

  “I know how much it costs to spend a whole summer at the Broken Arrow, and how much that saddle cost. I just assumed …”

  “Let me show you something, cowboy,” she said. “I’ve shared my one big secret, but I have another incredible one.” She reached over to her bedside table, picked up a piece of folded paper, and handed it to him. “Believe it or not, this is the source of all my wealth.”

  Morgan could tell the letter had been folded and refolded many times. He read, growing more astonished with every word. “You mean somebody just handed you a check for one hundred thousand dollars?” he asked when he was finished.

  “Yes.”

  “That’s hard to believe.”

  “It was for me too. Dad didn’t want to, but I used that money for us to go out West. Even though I don’t know the identity of JWC, I’ve been grateful for what he or she did for me. I’m positive this JWC has had a similar experience. We’re kindred spirits.”

  “What about the rest of the money?”

  “It’s going to care for me while I’m sick. The medications are expensive, and the hospitalizations too.”

  “The woman who opened the door?”

  “Actually, she’s a volunteer. She lost a son to AIDS, and now she wants to help others. I’ve made my dad promise not to let me die stuck in the hospital,” Anne explained.

  “But, what if—” Morgan blurted, wishing he’d thought before he’d spoken.

  “What if I get so sick, I die at home?” Anne finished his question. “That’s my goal. I want to die in my own bed, with no machines or impersonal surroundings.”

  His eyes grew wide. “It’s that control stuff again, Morgan. I can’t stop myself from dying, so I’m choosing my place and my way. It was hard to convince my dad. It’s not much, but it’s all I have.”

  Morgan stayed for dinner that night. With effort, Anne came to the dining room table, where she, Morgan, and her father ate and made small talk. All through the meal, Morgan sensed an undercurrent of hostility coming from Anne’s father. After Anne was tucked into bed, he decided to talk to Dr. Wingate before he left.

  Morgan approached him in the living room. “Can I speak to you, sir?”

  “What is it?”

  “I would like your permission to stay here in New York and to visit Anne regularly.

  Dr. Wingate tapped his fingers and gave Morgan a skeptical, searching look. “Why?”

  “I care about her.”

  “I care about her too. I don’t want her hurt.”

  “I don’t plan to hurt her.”

  “She’s going to die, Morgan. We don’t know how much longer she has, but it could take months.”

  “I don’t care how long it takes. I want to stay.”

  Dr. Wingate paused, thinking. “Look, I’ve attended classes about how to properly care for Anne at home. We have a team of doctors involved, and volunteers too. There are precautions that must be taken every step of the way.”

  “I’m not afraid of catching AIDS.”

  “The precautions aren’t for your sake. They’re for hers. She’s vulnerable to infections. Even a common cold could kill her, and we just made it by after her bout with pneumonia.”

  “I’ll do whatever you want. I’d just like your permission.”

  “I know she likes having you here. She’s shown more spirit, more spark today than she has in the last month. I won’t lie to you—these past few months have been pretty hard on me. I attend a support group for parents.” He adjusted his glasses and stared hard at Morgan. “If you want to stay, I won’t stop you. If you can make my daughter’s life better, I can make room for you here in the apartment.”

  “Look, I don’t want to put you out. Maybe I can find a place—”

  “This is New York City, Morgan, not Colorado. You don’t want to be in some fleabag hotel. No … you’ll be better off here—if you want to be.”

  Morgan thought his offer sounded almost like a challenge. “All right,” Morgan said. “I’ll move in. Thank you.”

  “You may not thank me for long, Morgan. I’m doing this for my daughter. Whatever time she’s got left, I want her to be happy. You make her happy. Please, don’t do anything to hurt her. She’s suffering enough already. She got AIDS through a blood transfusion that we thought would save her life. Now, no one can save her.”

  Eighteen

  MORGAN READ EVERYTHING Anne’s father gave him about AIDS. The facts made him shudder. What a terrible way for a person to die, he thought. About as terrible as having Huntington’s chorea. “The real enemy is death,” Anne told him during one of their many long talks. “Sometimes when I hurt really bad, I think of death as a friend, but then I think about how wonderful it is to be alive, and I see death as terrible. I wish I could live. There’s so much I wanted to do.”

  He reached over and took her hand. If death was her enemy, he wanted to hold it off for her. “I’ve been wanting to ask you something.”

  She clung to his hand. His skin was warm, and it felt so good to be touched. These days, few people touched her without wearing latex gloves. “Ask me before the pain pill takes effect and I get spacey,” she said.

  “The night I asked you to stay with me … would you have stayed if it hadn’t been for HIV?”

  She thought for a long time before answering. “I know this is going to sound corny, but I’m going to say it anyway. That night, I wanted to stay. But deep down inside, I’ve always wanted to wear white at my wedding and have it mean something. Not that I’ve ever longed to get married,” she added hastily. “I always wanted other things first. College, of course. A career. But if—and this is a big if—I ever was to get married, I’d want my husband to be the first man and the only man.”

  “It doesn’t sound corny.”

  “Knowing that I could have infected you with HIV made me know to stop. Still, I want to believe that even if I hadn’t been HIV-positive, I would have said no. It’s nice to think that you can do something noble, even when it goes against what you want to do.” She touched his cheek, “Morgan, I was tempted.”

  He smiled ruefully. “I wanted you to stay, but in a way, I was glad you didn’t. Even though the rejection hurt, it made you more special.”

 
She fell asleep smiling. Morgan watched her, reliving the short time they’d shared in Colorado. The night he’d held her, almost made love to her … the afternoon in the old church and cemetery … the picnic in the field of flowers …

  Looking at her now, he saw beyond the gauntness, beyond the skin eruptions, the shorn hair, the pallor of her flesh. What he saw was a girl he loved and could never, ever have.

  … … …

  On Christmas Day, Anne’s father carried her out to the tree in the living room. He settled her gently on the sofa and proceeded to heap her lap full of gifts. “Dad, you shouldn’t have,” she protested.

  “Hey, it’s Christmas. You know I couldn’t let it pass without buying you my usual assortment of useless presents!”

  She struggled with the wrappings. He knelt on the floor in front of her. He reminded Morgan of a little kid trying hard to please. “Here, let me help. I told that clerk not to use so much tape.”

  She opened boxes packed with sweaters, socks, a fleece bathrobe, sets of pajamas, and classical music CDs. “It’s too much, Dad,” she admonished.

  “I saved the best for last,” he said, pulling out one more small, flat box.

  She opened it and let out a delighted cry. “Daddy, it’s a first-edition Emily Dickinson! You shouldn’t have! I love it. It’s beautiful.” She held up the book and flipped through it, eyes glowing. She leaned down and hugged him.

  “I did a computer search and found it in an antiquarian bookstore in Boston.”

  Anne showed the book to Morgan. “Give my dad that box with the red paper, please” she said. “I’ve got something extra special for you too, Dad.”

  Morgan fetched it, and Anne’s father shook it du-fully. “It’s heavy.”

  “Be careful with that.”

  He undid the box. Inside lay a hinged photo frame, and when he swung it open, tears formed in his eyes. On one side was a photo of Anne’s mother; on the other, a photo of Anne. Morgan, looking over Dr. Wingate’s shoulder, couldn’t believe the resemblance between the two women. “Mrs. Hankins helped me,” Anne said, seeing her father’s reaction. “I slipped your favorite one of Mom—the one that got damaged years ago—from the album and had it restored and hand-colored. The one of me was my sophomore yearbook photo.”