Secrets, Aids And Faith: The Story Of Joyce Claypool Strength For The Journey Joyce Finds The Courage To Comfort Kara Through A Losing Battle With Aids

Last of four parts

A ghostly hand clutched at the back of Kara Claypool’s brain. CAT scans and magnetic resonance images outlined its location and dimensions.

The culprit behind Kara’s headaches looked like a flat piece of putty, a little larger than a tea bag. It festered in the cerebellum, the part of the brain that controls blinking and swallowing.

On July 25, 1995, neurosurgeon John Demakas walked briskly into the Deaconess Medical Center radiology department, prepared to take a tiny sample of the mysterious lesion.

The tissue he would capture in a sterile syringe would be sent to the lab. Until Kara’s doctors knew the nature of the tumor or infection, they wouldn’t know how to treat her.

Seven-year-old Kara floated into unconsciousness on a wave of watermelon-scented anesthetic. Just minutes before, she sat in a wheelchair bundled in a blanket, her mother, Joyce Claypool, kneeling in front of her.

“Special spot, Mommy?” Kara asked. Joyce touched her lips to a spot directly between Kara’s eyes.

“You get all the adventures,” Joyce said rosily.

Now nurse Catherine Moon lifted the girl tenderly as if she were a favorite rag doll and laid her on her stomach. Demakas brushed Kara’s hair and Moon gathered it into pigtails. A cart along the wall held surgical tools and two screwdrivers.

The team shaved a patch of Kara’s scalp, then locked her head in place with four screws attached to a frame. The table and the girl on it slid slowly into the large coil of an X-ray tube.

In an adjoining room, technician Steve Smith viewed a screen showing cross-sectional images of Kara’s brain. He located the small white cloud at the base of the cerebellum. Demakas studied the image, then returned to Kara.

Demakas inserted a tool that looked like an electric drill into the frame fitted around Kara’s skull. He made a pinhole incision, then filled a syringe with gritty cream-colored tissue. He placed a Band-Aid over the pinprick.

Doctors in unknown country

In the days following the July 25 biopsy, lab technicians in Spokane and at the University of Washington ran dozens of cultures and stains on the tissue. They tried again on a new sample taken in a second biopsy Aug. 5. They noticed destruction of normal brain tissue and white blood cells fighting infection.

The infection remained a riddle.

Bacterial, viral and fungal cultures were negative. Tests for herpes simplex, cat scratch disease and Epstein-Barr virus were negative.

Kara’s doctors realized they were in unknown country. Bill Greene, her pediatrician, talked with someone at the National Institutes of Health who knew of only three children with AIDS who developed brain masses. Two of the masses were cancer. One was an inflammation caused by herpes zoster, commonly known as the chicken-pox virus.

The test run on Kara’s tissue for herpes zoster also was negative.

Laws for clean living

Joyce and her sons, Dale and Chris, moved into Kara’s hospital room in early August. The boys slept in bedrolls on the floor, Joyce on a cot.

They hung two quilts from the ceiling to divide the room. Both were gifts to Kara, one from her school and one from Rogers High School where she spoke about AIDS with Joyce. Gradually, the room filled with other tokens: balloons, children’s paintings and a teddy bear that played “You Are My Sunshine.”

Living in a hospital, waiting for a loved one to recuperate or die, can focus a person’s mind. Calendars and clocks are meaningless. The essential questions of life ask and answer themselves in the night.

Joyce scratched through the trash heap of her past looking for whole memories. On bad days, she found shards that didn’t fit together. On good days, she merged the pieces into a divine path that carried her forward. God wanted her to educate and evangelize. AIDS was the sign he used to wake her up.

Five days after the second biopsy, Joyce sat in the hospital’s outdoor smoking area, the breeze blowing in her thinning hair.

Kara felt better today, and as Joyce’s Marlboro Light smoldered in her hand, she talked excitedly about the Old Testament laws for clean living.

She had been reading Leviticus and realized God isn’t a dictator who hates wild and crazy people, but a loving parent who wants humans to live long, healthy lives.

“God’s a loving father,” she said. “He’s not a killjoy.

“In my grade school,” Joyce continued, “there was a girl with Hodgkin’s disease. Sometimes I thought that if I had some terrible tragic disease, then people would love me. Just about the time I got over wanting to be a martyr I found out I had AIDS. And now everyone loves me.”

She laughed, then suddenly turned serious.

“But it’s not the disease that has made people love me, it’s me accepting myself.”

Emotions seesaw in pediatrics

By mid-August, Kara was the center of her solar system. Nurses and visitors orbited while doctors periodically zoomed in and out like comets.

Her brother Dale, now 11, made her a magic wand, which she used to brand people with the letter K so they would know who was boss. When a nurse came to change the dressing on her arm, Kara directed the procedure. “Uh-oh, you didn’t put some of the tape on tight enough,” she said.

The dressing covered the IV needle, through which pumped a steady flow of high-test antibiotics into the little girl’s heart.

The pediatrics ward felt as upbeat as a playground, but Joyce’s mood ran in the opposite direction.

“People think I’m trying to push Kara into her grave,” she said. “Nobody wants to believe this could be the final battle. I feel like the doctors aren’t ready to accept it.”

In fact, with Kara’s fever fading, doctors and nurses talked about sending her home with an IV machine. Joyce resisted. She wasn’t sure Kara’s improvement would last, although optimism buoyed everyone else.

Were they being realistic, or were they masking their fears for her sake? Joyce dreamed one night the hospital was running experiments on Kara, carving her up bit by bit. She thought about her husband Doug’s painful last days and prayed Kara wouldn’t suffer the same way.

Dale and Chris spent some weekends at friends’ homes, but on weekdays their waking hours were occupied with the hospital’s extensive collection of video games.

One afternoon, Dale played Donkey Kong and talked. He said he wanted to be a hockey player when he grows up. He wanted to become “so rich I can be an old fogey and play golf every day.”

AIDS is a fact of life to him, Dale said. His mom told him recently he and Chris might be able to live on their own when she died - if they were teenagers by then and if they had shown her they were responsible.

“We wouldn’t have to go live at anyone’s house. People would check in on us,” he said, his eyes glued to the video game.

He prays at night when he feels worried about Kara. But sometimes during the day he feels ignored. “Sometimes people sit there and talk to Kara and they totally blank me and Chris out.”

Ghostly grip tightens

On Aug. 21, the news was good and bad. A scan showed the inflamed area of Kara’s brain was smaller. But her temperature spiked again, and doctors suspected an allergic reaction to the antibiotics. They switched drugs.

Days slipped by and, unnoticed at first, the ghostly fist tightened its grip. On Monday, Aug. 28, Kara couldn’t move her eyes from side to side. She felt dizzy and sensitive to light and noise. Her head ached.

The next morning, she awoke hallucinating. She thought she saw her brother jumping on her toy handcuffs. “Make him stop, Mom,” she said. She slurred her words. She drooled. Her eyes were unfocused and half-closed.

Another scan showed the infection expanding. It attacked the midbrain.

That afternoon, Kara floated on her back in the bathtub, her face framed by bubbles, eyes closed, a peaceful smile on her lips. For a moment she seemed a normal, healthy child.

Then she sat up and wrung her washcloth over and over, an unnatural number of times. She became a pint-sized Lady Macbeth, caught in the clutches of a nightmare, washing her hands.

Joyce eased her from the tub and dressed her in a T-shirt signed by dozens of friends with AIDS gay men, former drug users, people who got the virus from blood transfusions. The message on the shirt said: “Strength for the Journey.”

Back in the hospital room, Joyce explained the recent scan to a friend.

“Just about the time everybody heard it was 40 percent smaller, it’s bigger again,” Joyce said. “What was smaller?” Kara asked in her new slurred voice.

“The thing in your brain,” Joyce replied cheerily as if she were saying “cake and ice cream” or “let’s go to a movie.”

Joyce plaited Kara’s hair into two long braids. She laid her daughter in bed and spread her pigtails to the ends of the pillow.

Dr. Demakas entered abruptly. He had seen the scan results.

“This thing has spread to the midbrain area, an area of the brain I can’t get to,” he said. He consulted a tumor specialist at the University of Washington. “He has a couple of ideas, but they would require going back in.” His euphemism meant more surgery.

Demakas said Kara could lose her gag reflex and might choke while eating. He wanted her fed intravenously. As if on cue, Kara grabbed her call button to the nurses’ station and tried eating it. Joyce gently removed it from her hand.

When Demakas left, Joyce said, “I don’t want them to go in again.”

‘Go to see Jesus’

That night, Kara struggled to breathe. Joyce called nurses, who strapped an oxygen mask around Kara’s face. She telephoned two friends around 3 a.m. and asked them to come.

Again, she asked God to make Kara’s death speedy and peaceful.

In the dark room, Kara clasped her oxygen mask with a newborn’s fierce grip. Through openings in the mask, Joyce vacuumed mucus from around Kara’s nose and mouth with a suction tube.

The wheeze of the suction machine competed with the voice of a radio preacher who talked about the death of Sarah in the Bible: “She has born the child of promise and her task is complete.” From across the hospital hallway, another patient cried out, “Owieeeee. Owieeeee.”

Joyce asked a friend to close the door.

An electronic box monitoring Kara’s oxygen level and heart rate beeped a warning. Her normal heart rate was 110. Now it was 160. Her shoulders and chest heaved. She sighed and moaned with each breath. Joyce climbed into the small bed and held her daughter.

Bill Greene was on vacation. A nurse called Dr. Deborah Harper, one of his partners. On the telephone, the doctor asked Joyce if she wanted Kara on a respirator. Joyce said no.

Joyce whispered into Kara’s ear. “It’s OK. Go to see Jesus. Daddy will be there and he’ll take real good care of you.”

Kara, who had not spoken in hours, answered with amazing clarity, “I love you, Mom.”

“I love you, too,” Joyce said.

At 5 a.m., a friend woke the boys, telling them their sister was on her way to heaven.

Chris decided not to get up. Dale climbed out of his sleeping bag. He had slept in a white T-shirt and blue jeans. He put his hands in his pockets and stood at the foot of the bed. He shook his head when Joyce asked if he wanted to hold Kara’s hand. Joyce told him he could lie back down. He did and dissolved in sobs.

Around 5:30 a.m., Harper arrived, freshly showered, a beeper attached to her jeans.

“My thought is I’ll do things that will keep Kara comfortable but not things that will make her last longer,” Harper said. “She doesn’t seem in pain. She looks real relaxed.”

“God’s timing is always best,” Joyce said. “Hey, Dale, I need a hug.” Dale picked himself off the floor and clasped his mother.

The windows glowed with the blush of morning light. Dale collapsed in a vacant wheelchair.

“Do you like this job, being a parent?” he asked Joyce.

“You know what?” she said. “I love being a parent.”

A doctor’s sorrow

As word spread, a parade of friends and family members arrived in pediatrics. Chris woke and retreated to the waiting room to watch television. Dale pretended to charge admission to Kara’s room.

When Dr. Greene called his office that morning to let them know he was back in town, he heard about Kara. He drove to the hospital and climbed three flights of stairs to pediatrics.

“Little sweetheart, I’m sorry,” he said to Kara.

“There’s nothing to be sorry about,” Joyce said. “You did a great job.”

Kara died minutes before noon. Pastor Bob Smith invited everyone in the room to join hands around Joyce, still holding Kara’s body in her bed. After his prayer, Joyce broke into song.

“Oh, Lord,” she sang. “You have been good. You have been faithful to all generations.”

‘This is a love story’

Three days after Kara’s death, Joyce’s world turned dark. What she called “satanic oppression” pressed her toward the carpeted floor. She wanted to lie down and listen to Kara’s favorite songs over and over again. She wanted to stare at photographs of Kara for minutes, hours, days. She wanted to sit in the September sun and smoke her lungs out. She wanted to scream at herself for her cigarette addiction. She rued each minute she lost with Kara during her cigarette breaks.

Her friend Julie Lewis convinced her to throw away Kara’s medicine bottles. “You can’t put them in a scrapbook,” she said.

Summer surrendered to fall. Grief gave way to determination.

Joyce made lists, checking off chores. She put in a basketball hoop for the boys, bought new furniture at a yard sale and moved her sons’ bedrooms into the basement. The boys attended grief counseling sessions. Joyce volunteered at school reading books to Kara’s classmates.

While the disease has not yet sent her to the hospital, AIDS is sculpting a different Joyce. Her hair, once thick and long, is thinning. She tires quickly. Fevers are sporadic visitors. Her immune system T-cells are dangerously low.

Now, Joyce closes the curtains on her public life. With Kara gone, AIDS awareness is less important than spending time with her sons.

By example, she teaches Dale and Chris survival and faith. Her calamitous childhood and the mistakes of her youth make her an unlikely role model. But then so was Mary Magdalene, who followed the man who cast out her demons.

Beyond her family, Joyce teaches her generation to take responsibility for their actions.

She sometimes wears a T-shirt that says, “Somewhere Between 30 and Death.” Like many others, she reached adulthood after birth control pills and before AIDS. Some made it out of that sexual playground unscathed. Others - like Joyce - didn’t.

Joyce’s legacy is a deeper empathy for people with AIDS. Her foursquare honesty broke through secrecy and fear in Spokane schools, churches and neighborhoods.

Finally, she teaches forgiveness.

Although her doctor believes it’s infeasible Joyce was infected before Doug, she flogs her conscience with the possibility. She defends Doug against friends who blame him for Kara’s death.

“This is a love story,” she said. “I still love my husband.”

Whenever she wonders whether stepping into the public spotlight was the right thing, Joyce will reread this letter she got from an old friend the other day: “Dear Joyce,

“Like a lot of people I have followed the story of your family through the newspaper and television. I remember thinking to myself what courage and conviction it must have taken for you to come forward and tell your story.

“I wondered what kind of person you were. It seemed like it would have been so much easier just to remain silent. I couldn’t imagine being in your place and having your character.

“Just today I realized who you are - Joyce Macko Claypool - and everything fell into place.”

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