Jacob paled. “Shit! Sounds like ALS or Lou Gehrig’s Disease.”
“Right. He’s already showing weakness and atrophy of his hand muscles and fasciculations of his thigh muscles.”
“Does he know?”
“No, but he knows it’s something serious. You’d better talk with him.”
P.J. wore jeans and a denim shirt. He sat on the examining table when Jacob and Zoe entered the room.
“Hey, Jacob. I missed you this morning. You sure hired a cute one in Dr. Spelling.”
“And a good one, too.”
P.J. looked into the serious faces and grew quiet. “You’re making me nervous, Jacob. What’s up?”
“We don’t know for sure, P.J., but I don’t like these symptoms and findings. It suggests neurologic disease of some kind. We need to do some testing.”
“Come on, Jacob. You have some idea. How bad can it be?”
Zoe turned her eyes away from P.J.
“We think it might be ALS, Lou Gehrig’s Disease. You’ve heard of it?”
“Heard of it! Years before I joined the 49ers, two players died of ALS, Matt Hazeltine and Gary Lewis. Hazeltine died within two years of the diagnosis.”
“I’m not making that diagnosis. We must run some tests.”
“There’s got to be some other explanation, Jacob. This will kill Julie and the girls.”
Chapter Nine
Marilyn and Robert Hughes had difficulty believing in their good fortune. Robert served as medical director of Brier Emergency, and the Coldwell-Banker office in Lafayette had named Marilyn Real Estate Agent of the Year with over twenty million dollars in sales. They planned carefully and Sarah Hughes dutifully complied by choosing to be born just as Marilyn celebrated her thirty-ninth birthday.
The attractive couple lived in the Piedmont section of Oakland. He was tall and athletic, but had added a few too many inches to his girth over the years. She, like most of the women in her family, looked years younger than the calendar suggested. She kept her blonde hair short and always looked great, especially when she dressed for work.
Sarah was a beautiful baby at eight pounds nine ounces. She had her mother’s love and her daddy’s adoration.
They tried to fulfill their master plan by having a son, but in spite of many attempts, including in-vitro fertilization, Marilyn was never again pregnant. They accepted the fact that Sarah was their one and only.
By the age of ten, Sarah was the perfect little girl. She had short chestnut hair worn back with barrettes or bows. She loved the expensive dresses Marilyn purchased for her. She dutifully attended art, ballet, and girls’ soccer, having little time left for anything but homework.
“She’s the sweetest thing,” said Robert, “but she’s too neat, too organized, and too restrained.”
“Wait until she reaches her teens, honey. You’ll be begging for the good-ole-days.”
Sarah had one close friend, Kelly Cowan, who lived three houses away. The two spent long hours in each other’s rooms doing homework and surfing the Internet.
One day, when Sarah was thirteen, Marilyn returned home early. When she ignored the Do Not Disturb sign on Sarah’s door, all their lives, in a moment, changed forever. Marilyn heard the Rolling Stones blasting from the room, and when she opened the door, both girls were dancing before the web camera in bra and panties.
Marilyn froze at the sight. “What’s going on here?”
Sarah gasped, and then reached for the computer keyboard blanking the screen at once. “It’s nothing, Mother. We’re just having fun.”
“Don’t lie to me, Sarah. I’ll have your father here in ten minutes. He’ll find out what you’re up to.”
Kelly looked at Marilyn. “I’d better get home.”
“You wait right here, young lady. Do your parents know about this?”
Kelly rolled her eyes and smirked. “There’s nothing to know.”
Marilyn picked up the computer and locked it in her closet. “Have it your way.”
Later, with the help of monitoring software, Marilyn and Robert discovered the streaming videos, the emails, and the trail of payments to the girls over the Internet.
Marilyn shook her head in disgust, as they watched the videos.
Who had been paying for and watching their daughter? she thought.
“Turn it off.”
Robert opened Sarah’s ledger book. “Look at Sarah’s record keeping. They’re in incredible detail and show an income of $500 to $1000 dollars a week.”
The reality shattered the Hughes’s image of Sarah’s sweet innocence. More alarming was Sarah’s attitude, the combination of dismissing the significance of what she’d done and her indifference to its effect on herself and her parents.
The next year brought more changes in Sarah, most of them unpleasant. She rarely talked with her parents except to argue. She sabotaged each intervention by counselors and psychiatrists.
“You can’t control me anymore, Mother. I don’t care how many shrinks you bring around.”
By her fifteenth birthday, she completed her transformation. Sarah knew how to reach her parents, especially Marilyn, and flaunted her independence with multiple piercings in both ears, the side of her nose, and her tongue. She rejected the refined tattoos, the flowers, or hearts, for the vulgar violent and bloody ones that decorated her neck and ankles. Worse, she adopted the Goth theme; black nail polish, hair, eyeliner, and black clothes with studs and zippers. Her clothes reeked of marijuana and she returned home drunk on several occasions.
Sarah gave her usual response to Marilyn’s ‘where are you going’ question, “Out,” as she left the house one evening.
Robert and Marilyn sat in the kitchen. He shook his head. “I don’t know her anymore. More than that, I hate her appearance. I detest the word revulsion, but it’s close to how I feel about my own daughter.”
“That’s exactly the effect she desires, and it’s working. I hate it too, but it’s only a symptom of an underlying problem.”
“For the moment, we have an uneasy truce. It’s the carrot and the stick approach...not a philosophy I thought we’d ever embrace.”
“Can she talk with anyone at the hospital?”
“Not really. She’s rejected the shrinks and social workers.” He hesitated a moment, then said, “Carleton Dix, the hospital chaplain, maybe he’s a possibility.”
“You must be kidding. From what I’ve heard of him, his rigid orthodoxy is all wrong for Sarah.”
“I agree, but the chaplain directs a teen group. Don’t underestimate the power of peer pressure on even someone like Sarah, look what it’s done to her so far.”
Chapter Ten
P.J. Manning shuffled through Jacob’s parking lot to his car. He gazed up, feeling the warm midday sun and bathing in the soft westerly breeze carrying the salty smell of the San Francisco Bay. Days like this made P.J. reflect on how great it felt to be alive. Today, he couldn’t escape the irony.
Julie Manning seared the pork loin and the kitchen filled with the hearty aroma of roasting meat. She turned as the front door opened. “Is that you, P.J.?”
When she heard no reply, she walked to the family room and found her husband sitting on the sofa, head down. She stared at him, finding it difficult to breathe. “What’s wrong? What did Jacob say?”
P.J. looked up at his wife. His eyes were moist with tears. “They don’t know for sure, but it’s bad.”
“Bad...what are you talking about?”
“Jacob and Dr. Spelling ordered some nerve tests...something’s going on in my nervous system.”
“They must have some idea,” she said as her voice moved up an octave.
“They do...”
“P.J., don’t do this to me. I’m your wife and I love you. Whatever it is, we’ll deal with it.”
His dry mouth felt like paste. “Have you heard of ALS or Lou Gehrig’s Disease?”
“I’ve heard the name, but I don’t know anything about it.”
&nbs
p; “I’ve known Jacob all my life, and I’ve never seen him so upset as when he said this was most likely ALS. Jacob’s seen a lot in life, and if he’s upset...”
“You’re still young. You’re the strongest man, the most determined man I’ve ever known. We’ll beat this, whatever it is.”
P.J. pulled Julie beside him on the sofa. He grasped her hands, and in a near whisper said, “If it’s ALS, medicine has no effective treatment.” He hesitated, then continued, “Did I ever tell you about Matt Hazeltine and Gary Lewis?”
“No, I don’t think so.”
“Both young. Both healthy, perfectly conditioned athletes for the 49’ers who died of ALS in the 80s. Few live more than five years. Matt Hazeltine died in two.”
“That’s a long time ago. They must have learned something about this disease by now.”
“They’ve learned a lot, except how to treat it. They have a few new drugs, but nothing works for long.”
“Something must be useful...”
“I don’t know how much we should get into this until they confirm the diagnosis, but... ”
“What?”
P.J. struggled with the words. “It’s a horrible, debilitating disease. Eventually you can’t walk, talk, dress, or bathe yourself. You may not be able to swallow. It’s awful...just awful, Julie. I thought I could face anything, but this...”
“Does it affect your mind?”
“Oh, if you have a perverse perspective on life, that’s the good news. Your mind remains perfectly intact. I’ll have a ringside seat to my own destruction.”
A week later, nerve and muscle testing established the diagnosis. Jacob referred P.J. to Michael Brader, the Chief of Neurology at U.C. Medical Center in San Francisco. His examination and review of the testing confirmed the diagnosis.
Julie leaned forward. “Don’t you have anything that works?”
“I’ve talked to Jacob about treatment. We have a few drugs that might help, but I won’t mislead you; so far nothing has had a permanent effect on halting the progression of the disease.”
Robert Hughes took the elevator to Brier Hospital’s fifth floor. He knocked on Carleton Dix’s door.
“Come in, Doc.”
“Do you have a moment?”
“Of course, Bob. Moments like this make up my daily life. What can I do for you?”
“I’d like information about your teen group.” He hesitated. “We’re having a tough time with Sarah.”
“I know.”
“You know?”
“This isn’t that large a community. I work with teenage girls who attend Piedmont High with Sarah.”
“We’re in trouble with her. We’ve tried everything but a nunnery, and I’d consider that too, if I believed it would work. This is way beyond mere teenage rebellion. Her behavior is destructive and we’re ready to admit that we can’t handle her anymore.”
“I’d like to help you Bob, but...let me be honest. I’ve heard a lot about Sarah from the other girls, none of it good. It isn’t that I avoid the tough cases, you should see what we’ve had in the past. But for the sake of my girls, I avoid taking on anyone who may adversely affect the dynamic of the group.”
“I understand, and to be completely candid, I can’t blame you. Do you have any other recommendations?”
The chaplain thought a moment then licked his lips. “Why don’t I sit for a few minutes with Sarah. Maybe we can work something out.”
Chapter Eleven
After dinner the next night, Robert Hughes paraphrased his conversation with the chaplain.
Sarah stood. “Carleton Dix! The chaplain? Are you out of your fucking minds?”
Robert stared at his daughter. “Use that language with your friends, if you will. It doesn’t impress me.”
Marilyn’s eyes were red from crying. “We’re trying to help you before it’s too late.”
“You want me to join with those dorks, those slackers who are only in that group because they got busted.”
Marilyn shook her head. “That’s not true. They discuss things that are important to girls your age. Kelly Cowan is in the group and her mother says she loves it.”
“Keep it real, Mother. I don’t hang with Kelly since she got back from the loony bin.”
Robert tightened his jaw. “Make it hard or make it easy, but go you will.”
“You people will never learn.” Sarah ran to her room and slammed the door.
Marilyn turned to Robert. “This may be a mistake. If she doesn’t respect the man, I don’t think he’ll get anywhere.”
“How much worse can it get? One day soon, if we can’t get to her, she’s going to leave.”
The YMCA on Allston Way in Berkeley donated a room each Wednesday night for Carleton Dix and his TeenTalk group.
Sarah Hughes sat on the sofa in the foyer outside the meeting room picking at her fingernails. She wore a short black skirt and a blue tank top.
Kelly Cowan smiled as she arrived for the meeting. “What are you doing here?”
“What do you think?”
Kelly sat next to Sarah. “I think you’re seeking spiritual enlightenment.”
“Right.”
“I don’t know what happened, Sarah. We were tight.”
“Until you went all lame on me. That loony bin did something to your mind.”
Kelly looked at her feet. “It was bad, Sarah. I went bonkers. They helped me see that I was giving away my future. For what? In many ways, I feel more in control of myself than I ever did with the drugs and the booze.”
“I have a flash for you, Kelly; it’s all a load of shit, the easy way out. You really want to be like them?”
“Them?”
“Your ‘rents?”
“At least my mom and dad have done something with their lives. You and me, girlfriend, we were heading for the big crash. I’m out of that life, and I’m staying out.”
Just then, Carleton Dix arrived. “Go in, Kelly. I’ll join you in a minute.”
He turned to Sarah. “I know you’re not exactly stoked being here, but why not give it a try?”
Stoked? Sarah thought. Who’s he kidding?
“I’m not into this, but to make peace, I’ll sit in just this one time.”
“Sit in. Don’t sit in. It’s all up to you.”
“I don’t like anyone preaching to me, chaplain...is that what I should call you?”
“That’s okay or reverend or Carleton, and I don’t preach here, I moderate. The girls do the talking, that is those who have the guts to do so. If you want preaching, I can send you to any number of churches.”
Afterward, Kelly approached Sarah. “What do you think?”
“Lame...it sounded pretty lame to me. I got enough problems without listening to a bunch of whining preps.”
“Come on, Sarah. It wasn’t so bad. At least they speak a language you can understand, and don’t tell me their problems are totally foreign to you. Why don’t you come over for a while. We can catch up.”
“Sorry, Kelly. I got a date.”
Chapter Twelve
Nothing prepared P.J., Julie, or their girls for the reality of ALS.
Six months after fighting it with all his strength, P.J. found himself confined to a wheelchair. The family sat at the dinner table with a roast chicken in the center.
It smells great, P.J. thought as he looked down at his bowl filled with an unidentifiable gruel. Pureed and soft foods were all he could handle.
He reached for the plastic cup of orange juice, raised it with difficulty to his lips with trembling hands and sipped. He choked and coughed as fluid entered his windpipe and his lungs.
P.J. reddened as tears streaked down his face. He continued to cough, then shook his head. “Get me out of here, Julie. I can’t stand this.”
His weight declined from 160 to 130 lbs. Speaking had become more problematic, an especially difficult loss as the house was always full of strong vibrant voices. Julie pushed the wheelchair into the family room.
“Please sit with me, Julie, I need to talk with you while I can.”
“Of course,” she replied sitting next to him on the sofa. She watched the movement of his mouth as he tried to control his speech and saw the twitching, the fasciculations, on his tongue.
“You must make me a promise.”
“Anything.”
“When I reach the end...when they say, if we don’t put him on the ventilator, he’ll die, I want you to say no, and I want you to say no to resuscitation. I want a DNR, Do Not Resuscitate order in my medical records.”
Julie placed her hand across her mouth. Tears rolled down her cheeks. “You don’t have to worry. You’ve signed all the documents, the living will and the advanced directive for medical care. That should do it.”
No Cure for Murder Page 5