When AIDS Comes Home, Part III: The Long Road Home

Tom Fox visiting the Spring Hill funeral home to make arrangements for his funeral. Although he has decided to be cremated, he is taking a moment to help his friend and fellow AIDS sufferer, Pat Heinrich, choose a casket, Atlanta, Georgia, August 29, 1988. Michael Schwarz / The Atlanta Journal-Constitution
Tom Fox visiting the Spring Hill funeral home to make arrangements for his funeral. Although he has decided to be cremated, he is taking a moment to help his friend and fellow AIDS sufferer, Pat Heinrich, choose a casket, Atlanta, Georgia, August 29, 1988. Michael Schwarz / The Atlanta Journal-Constitution

Credit: Michael Schwarz

Credit: Michael Schwarz

Originally published 25 years ago, Steve Sternberg's groundbreaking story of one man's fight against AIDS

For a man who had spent his life heaping up experiences the way a child collects toys, the rugged coastline of Oregon became a lush revelation - a landscape of such beauty that seeing was doing.

"Here you can sit and watch the day go by, and you don't feel like you are doing nothing, " Tom Fox said. "I feel sick, I know I'm sick, but all of a sudden my mind is clear. Perfect."

Bonny had picked Tom Fox up at Portland International Airport and driven him 2 1/2 hours south to the Barattas' home on the crest of a hill in Cottage Grove, home of 7,000 people who live their lives in the deep shade of buttes and Douglas fir.

Tom spent hours with a book in his lap sitting on the white wrought- iron bench by the Barattas' front door, watching the clouds drag shadows across the distant mountains. As much as he liked to read, he rarely lowered his head to the biography of Tennessee Williams he held in his hands.

Over the weekend, Bonny drove her two-Tom family - she took to calling her husband Tom Elliott and her friend Thomas Henry - to the town of Ashland, Ore., near the California border to see Joe Yusca and Linda Hilligoss, two of Tom's favorite Indiana University camping buddies.

That week Tom savored unaccustomed contentment, a break from his fight for survival in Atlanta.

The respite ended Thursday, June 29, the morning Bonny and her two Toms drove to Timberline Lodge on Mount Hood.

Photographer Michael Schwarz and I had flown into Portland earlier that day and driven up to meet them.

We had already checked into our rooms and unpacked when the Barattas arrived. Bonny had driven through the mountains a treacherous six hours from Cottage Grove. It had been a trial for Thomas Henry.

His legs and feet swelled so from riding cramped in the back next to Sam's car seat that his own stretched-out black Reeboks would no longer fit and he had to wear Tom Baratta's open-toed, cork-soled sandals.

Worse, he couldn't seem to catch his breath.

Bonny had taken the precaution of renting two green cylinders of oxygen, but even with the oxygen he was so winded from the 15-yard walk to the lodge that he had to exhale his "hello" in fragments.

"At 10,000 feet anybody has a hard time breathing, " he said, trying at first to dismiss his growing discomfort.

But after a moment, the pretense collapsed.

"I'm gasping like a fish out of water, " he said, his voice mixing fear and dismay, his face pale and waxen. He began coughing, a racking cough, painful to listen to. He seemed more fragile than usual, with prominent bruises of Kaposi's sarcoma visible on his temple and dabs of flesh-toned pancake makeup over two lesions on his face.

So difficult had the afternoon been that Bonny and Tom had contemplated an emergency stop to drain the fluid that Tom believed was again compressing his right lung. They decided to continue through the mountains instead.

Tom Fox had reached the point where no amount of charm, subterfuge or makeup could hide his illness. At dinner in the lodge restaurant that night, Tom had to ask the maitre d' for a ramp so he could get his swollen legs and rolling oxygen bottle down three steps to the table.

Skiers whose bones are intact rarely need special access ramps, and the tables seemed populated with them: healthy-looking men and women who were tanned from the sun and ruddy from the mountain air.

Heads lifted for an instant and then politely dipped back into conversations as Tom hobbled between tables pushing his oxygen tank, with Bonny walking slowly beside him steering Sam's stroller.

After ordering shrimp hors d'oeuvres, Tom Fox asked the waiter if he could bring a blanket he could sit on.

"I have such a boney butt, " he explained.

The waiter politely complied with the request. Later, one of the waitresses confided that we were among our waiter's first customers on his first night - and that the kitchen staff had correctly diagnosed Tom's problem as AIDS. No one made a fuss, the waitress said.

"Here is this man who's losing his life and everyone was so genuinely concerned, " she said.

The next morning, leaving also created a sensation.

Step. Step. Step.

Walking out of the lodge door took Tom long moments.

Skiers clumping along in stiff boots turned to watch and then walked on.

A tiny, pretty girl about 10 years of age with flaxen hair turned to see who was coughing, a gravelly, pained sound.

When her eyes settled on the source of the commotion, her look turned from curiosity into something close to horror.

Tom looked past her, and it was not just that she was a child - he now felt so ugly and so self-conscious that he always averted his eyes from other people.

"I never look at them anymore, " he said. "Hoping they won't look at me."

University Hospital in Portland, the unplanned first stop on Friday morning, already held heart-wrenching memories for the Barattas.

Their first child, a 3 1/2-month-old daughter named Jacey, died there of a misshapen heart that would stop without warning. Bonny, the mother, would have to become Bonny, the nurse, and resuscitate her daughter.

Jacey spent her last days hooked to a ventilator that did her breathing for her.

Ultimately, doctors in Portland could not help the child.

The road to the hospital from Portland, set deep in the Willamette Valley, twisted up a steep slope. "It must be hard for Bonny to drive up this hill, " Tom said as we trailed the Barattas in a rented car.

We arrived at the hospital's emergency entrance at 2:30 p.m., and within a few minutes Tom had given the nurse on duty his recent medical history, including a dozen medications and their dosages. He left her speechless. When he finished, she had no questions left to ask.

While waiting for Tom to be seen by a doctor, the Barattas took Sam to introduce him to the pediatrician who had taken care of Jacey - to fulfill a promise to him that he would meet their next child - and to see a memorial they had donated to the pediatric nursery. Then they left the hospital to trade Tom's oxygen bottles for full ones.

Tom was terrified that the doctor was going to puncture his lung when he drained the fluid from around it. He asked the doctor, Kevin Johns, who was training in emergency medicine, to use the same instrument his Atlanta doctor used - one with a needle that recedes into a soft plastic catheter.

To Tom's relief, the doctor agreed.

The anesthesia was the worst part. Tom jumped before the long needle touched him, gripped the seat he was leaning against, and in an instant issued an explosive gasp of pain. His hands gripped the post of the chair; his eyes were squeezed shut, his face pressed into the pillow.

"How much fluid did they get out the last time, a quart?" a nurse asked.

"And a half, " Tom said.

"Wow."

The doctor inserted the needle-tipped catheter between Tom's fifth and sixth ribs. "I haven't hit fluid yet, " the doctor said. "I have it in two or three inches."

"I can't believe you didn't get any fluid, " a nurse said. "Or lung." At 5:25 p.m., he decided to try again.

But the second try also was fruitless. "I'm going to try a little higher, " he said.

A second doctor, John A. Schriver, head of emergency medicine at University Hospital, stepped into the room.

"I don't follow your logic, " he said to the doctor behind Tom.

Why, the emergency-room chief seemed to be thinking, would you go higher - if gravity drags fluid downward? "I would be willing to try anything you might suggest, " Dr. Johns said.

Dr. Schriver did not pause for Tom's history or any explanation. He inserted a needle lower in Tom's back. It was a straight needle that would attach to a syringe, not a soft catheter. The last time a doctor had used that sort of needle on Tom in 1987, he had punctured Tom's lung and lengthened his hospital stay by three weeks.

"Can you take the needle out? I'm really afraid of the needle, " Tom said. "The last time they did this with a needle they punctured my lung." "I'm being as careful as I can, " Dr. Schriver said.

"Please, doctor." Tom was weeping in pain, fear and frustration.

The doctor continued, drawing off syringe after syringe of fluid.

When the X-rays came back, the doctors huddled around them. "I think what we have here, " Dr. Schriver said, "is a little, tiny pneumothorax."

"Did you puncture my lung?"

"Ordinarily we wouldn't even worry about it, " Dr. Schriver continued. "It's really functionally inconsequential."

"Yes, but in my sad-sack old lungs?" Tom asked.

Friday night, Bonny and Tom Fox lay side by side on his bed in the Mallory Hotel, where she and her husband had stayed while their daughter was in the hospital. Tom was shivering from chills or fright.

Bonny had called for extra blankets, though it was July.

"I didn't want to be a burden to you and I was today, " Tom said.

"I knew you'd think that, and I don't want you to, " Bonny said. "I knew what I was getting myself into when I invited you."

Tom was exhausted.

Bonny was relieved that she and her husband would not have to spend the night in the same room as Tom. He had kept both awake at Mount Hood, whimpering and crying, "Oh God, please help me, I'm so sick."

Tom Baratta had lain awake suffering agonies in sympathy with Tom's cries.

For Bonny, the silences had been equally awful. She had spent the night attuned to the silence much as she had when Jacey was alive - never trusting the quiet, straining to hear sounds of distress.

From the sound of Tom's breathing, she had guessed that Tom needed oxygen. He awakened as she hooked up a new cylinder.

She asked how he was.

Unaware that he had been making a racket, Tom had said, "Fine."

"It goes to show you the difference between the conscious and the unconscious, " Tom said, the covers pulled up to his chin. "I try to pretend that everything's fine, even when everything isn't, and I'm sick, " he said.

"But I can breathe now. Tomorrow we're going to the beach."

Agate Beach, a long dark strand running under a steep point of land marked by a lighthouse, was visible from Tom's futon-sofa through sliding glass doors, ferns and fir trees.

Tom never set foot on the beach. He spent his days in the living room of the condominium owned by Bonny's parents. He could barely pace out the 10 steps from where he lay to the bathroom. But he didn't complain.

"I'm fine as long as I'm lying here, " he said. "When I try to move . . . " Tom spent most of his time on the futon, which folded up into a sofa during the day. His nights were hellish - only once did he sleep through the night without awakening Bonny or her husband. One night was especially uncomfortable.

Sam had awakened his parents at 5. He had diarrhea and stained his diaper with a drop of blood.

"Worst part of it is, I'd kept everyone up until 4, " Tom said.

The worst part for Tom Baratta - whose life for the past few days had been a traveling medical emergency peopled by strangers - was an irrational fear that his Sam had AIDS.

Sam didn't have AIDS; he had normal baby diarrhea.

"So many people go through life with nothing, " Tom Fox said. "They have no friends, they skip from person to person depending on where they work. We've all changed but that hasn't made any difference in our friendship at all. The same thing with people I've met who are sick.

"We've gotten close because we've all been through so much together. It's kind of an adventure."

Tom was sitting in a rocking chair in between his oxygen bottle and a crackling fire in the fireplace. Bonny and her husband were cooking ling cod and red snapper she had caught fishing a couple of weeks earlier. Linda Kuzmic Hilligoss, Tom's friend from college, had come from Ashland for another visit.

"You never seem to give up, " Linda said.

Tom said he kept his walker as a symbol of why he never gave up. "I have it in my closet to remind me that if they say three weeks you don't have to believe it.

"I take everything day by day, " Tom said. "People thought I was crazy for coming out here, but I had never met Tom Baratta. And I always wondered who would marry 'Kuz.' "There's something else this trip has shown me - that my physical appearance has changed, but my friends look right through that when they look at me."

"Your Tom Fox spirit hasn't left, " Linda said.

"I'll have to find someplace to leave it, " Tom said.

"You've been passing it out for years, " Bonny said.

At dinner, Linda told camping stories, like the time Tom slithered out of a muddy cave on his stomach with an injured woman clinging to his back. She had cut her foot. He had kept her - and everyone else - laughing.

In the easy camaraderie, the underlying concern over Tom's worsening condition began to dissipate. For the first time in days, everyone relaxed - even Tom - and almost everyone began laughing about silly things.

Tom couldn't laugh for fear of choking. Then he lost control, and his laughter turned to coughing.

"I guess I'd better go to the bathroom, " he said.

He got up slowly and wheeled his oxygen tank before him. "Me and my shadow, " he said.

Monday, the 3rd of July, was the day we would leave the coast and drive to the Barattas' home in Cottage Grove, 20 miles outside Eugene. It was lovelier than the day before, with blue sky, traces of clouds, white sails daubed up against the horizon.

It was a quiet drive.

Tom watched the shoreline, the grass, the basalt outcroppings from volcanoes of centuries ago. He seemed to swallow things with his eyes.

He commented on everything. A Mobil station with a sign of the old- fashioned winged horse; a one-legged bicyclist pumping up and down the mountains with his good foot clamped to the pedal; and the flags flying - "Everybody's getting ready for the Fourth."

He read aloud the place names on the signs: Haceto Bend; Devil's Elbow; Cape Perpetua; Florence by the Dunes, mountainous dunes lush with growth; and Strawberry Hill, where harbor seals dozed on outcroppings of basalt in the Pacific.

Bonny directed Michael to turn right at Strawberry Hill and park the car. Tom shuffled the 15 yards to a lookout point, a bench on a bluff overlooking the ocean. It was the longest walk he had taken in days.

For a while, he sat watching the seals slip off the rocks into the ocean; then he sat for the longest time with his eyes closed, feeling the warmth of the bench at his back in the sun, the extraordinary calm that day of the ocean, the weight and fragrance of the salt breeze.

"With air like this you don't need any oxygen, " he said. "It's so rich. Sick as I feel, I'd rather be doing this than lying in some bed.

Somehow I keep thinking of Johnnie and Pat lying there. If only they'd push themselves a little."

Finally he stirred. "Ready Eddie?" Bonny gathered up Sam, Michael packed his cameras, and we piled into the car.

"Bye, seals, " Tom said as we drove off.

In Eugene, we stopped at a medical supplier to trade Tom's empty tanks of oxygen for new ones. Sam had a field day banging the lids on the bedside commodes. Tom found a chair and waited. Bonny examined the pictures on the wall. They were of people riding bicycles, plowing, fishing, picnicking, grocery shopping, lighting a campfire.

All of them were wearing oxygen masks. All of them were old.

Tom said a tank of oxygen that cost $17.50 in Eugene cost $60 in Atlanta.

The man behind the counter whistled.

"I ought to move to Oregon so I can afford to breathe, " Tom said.

The last stop in Eugene before leaving for Cottage Grove was at Sacred Heart Hospital, to see whether Tom's punctured lung was healing.

It appeared to be.

That evening, we cooked hamburgers on the grill. Soon Tom Baratta went up to the bedroom to study for an upcoming exam. Bonny dimmed the lights and went to sit on the sofa at Tom's feet. In the half-lit living room, the room had the sepia cast of an old photograph.

Tom lay wrapped in an afghan shivering slightly.

Absently Bonny ran her hand up and down his calf under the afghan.

"Want a massage?" she asked.

Tom nodded gratefully.

He pulled off his sweatpants and lay wrapped in a blanket in his boxer shorts. His protruding legs looked gargantuan from swelling and were stained with purple. In some places, the purple looked frosty from radiation burns.

Bonny went to the bathroom and returned with baby lotion. She worked some into Tom's left foot, then his right foot.

"Strange to feel good in a place that's hurt so much for so long, " Tom said. Bonny squeezed more lotion on her hands, cried, and rubbed some more.

The Fourth of July began with an emergency.

"I think Tom's getting worse, " Bonny said in the gazebo at our bed- and-breakfast the next morning. She had gone for a run and stopped by on her way home. "He can't get any air. Last night he woke me at 2:15 a.m. and said he had a pain in his chest, and thought he was having a heart attack.

"I told him it was probably gas. I took his pulse; it was galloping. Every night it seems to me that he's closer to it. I told him how the other night - after we had so much fun - I didn't hear him making any noise, so I got really scared that he had died and went down to check on him.

"I thought, What better way to die than after we had so much fun? Then I thought, he could go into respiratory arrest at any time. What do I do? Do I resuscitate him?"

I drove Bonny back to her house. Tom Baratta was sitting on the sofa reading the paper, watching Sam. "I'm worrying more and more that Tom's going to die, " he said.

"I didn't let myself deal with that in the beginning - I didn't get too attached to Tom. I told him, 'Just hang on, they're going to find a cure, ' but I think I was saying that for me and not for him. Seeing how much he has to struggle to live and how hard it is makes me see what courage he has."

He began to cry. "I never got to see that with Jacey, she was so little. There was no way to measure her struggle to live. If she was anything like Tom, she tried real hard."

Bonny came out of Tom's room, alarmed. He couldn't seem to catch his breath. She had asked Tom what she should do if he went into respiratory arrest. He said, "CPR, call an ambulance, get me to the hospital."

We decided not to wait.

During the 20-mile drive to Sacred Heart's emergency room, Tom was motionless on the front seat, covered by an afghan. He had the seat back. His chest rose and fell in small movements.

He said, "Bonny may have to do CPR today."

The drive was at 80 miles an hour. Faster. The needle was off the speedometer.

The emergency room doctor ordered X-rays and compared them with sets made earlier, during each hospital stop. He decided to call in a specialist.

"There's something going on, and I'm not sure what it represents, " he told Tom. "I've never seen anything like it before."

"Bring on the guns, " Tom said.

The specialist, a tall, scholarly man with graying hair and wire- rimmed glasses, was named Dr. Matthew Purvis.

The doctor told Tom he might have pneumocystis pneumonia.

Tom asked if there were any chance he might be able to "patch him up" in time to go home the next day. Tom said he planned to go straight to the hospital from the airport.

"You're not going home tomorrow because I am going to admit you to the hospital today."

"What a way to end a vacation, " Tom said. "We sure trotted around Oregon, didn't we?" "Where'd you go?" Dr. Purvis asked.

"Everywhere. Ashland. Mount Hood. Portland. Newport. Eugene. I like Eugene the best. It's so peaceful. So beautiful."

"I'm so scared, " Bonny said, where Tom couldn't hear her.

Today is the day Tom Fox decided not to die.

Morning and afternoon passed quietly. At about 10:20 p.m. on July 5, Bonny called Tom's hospital room to check in and say good night. He was hysterical.

"I can't breathe, " he said. "Oxygen isn't helping."

"I'll be there in a minute, honey, " Bonny said.

"I'm scared, " Tom said, when she arrived at his bedside.

"You know this old body isn't you, it's just a place where you're living. Your spirit is so much stronger than your body, " Bonny said.

Tom wouldn't look anyone in the eye. It was as if he was afraid someone would see the depth of his terror, or that looking in someone else's eyes he would see himself as a condemned man.

Bonny kissed Tom and hugged him.

"Maybe my lungs won't take air anymore, " he said.

"Breathe, slow and deep. That's it, " Bonny said.

"I can't breathe. I mean, I'm breathing but I can't get any air."

"What are you thinking?" Bonny asked.

"This might be it."

But the crisis passed, at least for the moment. A motherly respiratory therapist fitted Tom with a full oxygen mask and he felt less like he was suffocating. He was tired. But every time his eyes began to close, he jerked awake. "I'm scared to sleep, " he said.

"Why?"

"I'm scared I won't wake up."

"Would that be so bad?" Bonny asked.

"I've got to think my body is deteriorating. There is a time when a tired body isn't able to keep its spirit anymore. I think that it might happen tonight. I don't know if I should hold on or let go. I still have a choice right now, but I'm afraid the choice will be taken from me. I can't control what's happening to me anymore. I've always tried, patched it up - always. How do I find faith and courage before it happens?"

"Whatever you need tonight is inside you, " Bonny said. "You've been perfect through this whole fight. Listen to your heart."

"My heart is tired, " Tom said. "My lungs are tired, my body's tired too. But I'm afraid to let go of them because I don't know what happens next. I always thought my faith was strong enough."

"The thing I want you to think about is how aggressively you want to be treated, " Bonny said. "The decision is whether living for a little while with all that stuff is worth it to you."

"Are there people who get off the ventilator?"

"Yes."

"I think we ought to try it, " Tom said. "Is that all right with you guys? I don't think I'm ready to say goodbye yet. Can they save me, Bonny? Jacey was on a ventilator and got off."

"You have to be right here in this moment, you can't worry about tomorrow, " Bonny said, soothing him. "Listen to the rhythm of your breathing, focus on that air moving in and out."

"Can you turn the oxygen up any?" Urgency in his voice.

"I'll nudge it up a bit but don't tell anybody, " Bonny said.

"My dad's in British Columbia or Vancouver. He's close. He could come down."

The nurse entered with tiny paper cups of pills. Tom refused to take off the oxygen mask long enough to take them. The tendons in his neck tightened with every breath. He seemed to relax. He stopped talking, and seemingly began breathing one breath at a time, with less and less energy. By 1:45 a.m., his breath was barely misting the inside of his oxygen mask.

The intensive care team was overdue with the ventilator. We thought Tom might not survive until they arrived.

Time and again, his breathing stopped - but only for an instant.

Suddenly he would catch a breath, and take another.

"You're doing really good, Tom, " Bonny said. "Your breathing's easing up. Keep it up. You're doing fine."

In the hall, an Asian doctor was arguing with the nurses. Tom's infectious disease specialist, Dr. John Wilson, had started an argument over who Tom's primary doctor was. When the nurses called him, he said he was not and refused to come to the hospital.

The Asian doctor had come to the hospital when the nurses called, but was reluctant to take over another doctor's patient. I interrupted and suggested they finish their argument after the doctor had attended to Tom.

The doctor, a kindly man, could do little but give Tom a status report. "Right now it is obvious you are in respiratory failure. We are giving you as much oxygen as we can. Do you want to be on a ventilator?"

"Yes."

"It will not do anything. It will prolong your life but it will not save it." He reached down, grasped Tom's X-rays, and held them up to the light one at a time, displaying Tom's worsening infection. The film showed light where much of Tom's lung should have been.

"This is your lung, and this is your heart. This is the first X-ray, the second, the third, the fourth. Your lung is almost totally whited out. This is a process that has totally compromised your lung tissue."

"I want aggressive treatment, " Tom said. "What's my alternative? To lie here like a fish out of water and die?"

All evening we had been debating whether to call Tom's mother. The prospect of survival on a ventilator stayed us; we thought he would survive until morning, at least, and we could let Doris Fox finish part of a night's sleep.

At 2 a.m., the ventilator had not arrived. Tom's already shallow breathing continued to diminish. He seemed barely conscious. I left the room to make the phone call.

It was 4 a.m. in Bloomington, Ind.

I told Mrs. Fox what the doctor had said - that Tom might not live out the night, that he had fought hard earlier but appeared to be giving in. I asked her if she wanted to speak to him. She sounded frightened, at a loss for something to say. I said I would call her from his room.

When I returned, Tom appeared to be asleep, his breathing barely perceptible. "Do you want to talk to your mom?" I asked, as I was dialing the phone. He did not stir. He did not seem to hear me.

I spoke louder. When I heard Mrs. Fox's voice, I touched Tom on the shoulder and asked him loudly whether he could speak with his mother.

Weakly, without opening his eyes, he reached up and took the telephone.

As his mother spoke to him, he slowly became animated.

"Pray for me, " Tom said. "I want to try to get better but I may not be able to. I want you to know my life has been full and wonderful. We never showed you that enough - you and Dad gave us wonderful lives.

"I just wish you were here. If I make it through the night I want you here to hold me."

The night before, Bonny had told Tom the one word she would use to describe him was tenacious. This morning she found that Tom had written it on the clipboard a nurse had given him so that he could communicate.

He also had written the word "stubborn."

He couldn't speak while on the ventilator because its half-inch corrugated tube had been threaded into his airway through his vocal cords. Another tube had been inserted into his stomach for tube feedings. The intensive care vigil had begun.

Dr. Wilson, the infectious disease specialist, already was impatient with it. "I really think they only should have made him comfortable last night. We're in a no-win situation, " he said. "At some point, Tom's going to have to make the decision to turn that ventilator off."

Tom was not at all ready to die.

His parents were on the way.

Bob Fox Sr. was the first to arrive. He found his son in one bed amid a row of beds, wearing his glasses, with a damp cloth over his forehead. Tom reached out, took his father's hand and squeezed it.

Mr. Fox was crying. "Don't worry, son, we'll pull through this. You have great courage."

Tom wrote on his pad: "I must look so pretty."

His father didn't know whether to laugh or cry.

He did both.

"I was dreading coming but I'm glad I'm here, " his father said moments later. "I love you, son."

Seeing his son this way was killing him. After a few moments, he wanted to leave to collect himself, but Tom was holding his arm. He would not let go. Every time his father pulled away, Tom would ask him a question.

"Where are you staying?" Tom wrote. "In Eugene?"

"We'll be very happy in Eugene, " his father said. "I'll leave you now, try to get some rest."

"I'll be here, " Tom wrote, and then asked another question of his father.

Joe Yusca picked Mrs. Fox up at the airport in Portland. She arrived about 9 p.m. Thursday, July 6.

Tom's father greeted his wife with a squeeze and walked her into the intensive care ward. "He still has a sense of humor. He's near death but that hasn't affected his mind, " he said.

Tom nodded agreement, excitement in his face as his mother hugged and kissed him.

"Hey baby, can you talk to me?" Mrs. Fox asked.

"I have to write everything, " Tom wrote.

She reached for his clipboard to write him a message.

"You can talk to him, honey, " Bob Sr. said.

Tom wrote, "How was your flight?"

"Oh, it was scary, " Mrs. Fox said. "Every time the plane shuddered, I shuddered." She was afraid to fly.

"What about Bob?" Tom wrote.

"He's coming tonight, " Mrs. Fox said.

"John?" "He's coming tomorrow."

"Hopefully, " he wrote, "I can be off the ventilator by then."

Joe Yusca walked up; Tom was so happy to see him that he literally jerked up out of bed, his hand outstretched.

"Howdy, Joe, " Tom wrote. "They got me kinda tied down here.

Hopefully soon they'll release me from this high-tech machine. I itch. I must have fleas."

Mrs. Fox laughed out loud, then caught herself. Her husband put his finger to his lips and soberly reminded her that this was an intensive care ward.

"I forget, " she said. "When you're with Tom it's hard to remember you're in critical condition."

If Doris Fox's refuge from grief was humor, her husband would vanish into business as a refuge from the emotional tides of family life. With Tom sick the tide had become a terrifying wave, with an intensity that frightened him.

When Bob Fox Sr. arrived at the hospital, he could not bear the sight of Tom lying between steel bedrails with two tubes threaded through a nostril, four electrodes attached to his chest, nor the sound of half a dozen ventilators whirring in the intensive care unit.

He escaped from Tom's bedside frequently, disappearing into an endless round of phone calls to his secretary about Tom and about work.

Work still nagged at him.

On a walk around the hospital, he began to discuss a project that required him to be at meetings in Atlanta on Sunday and Wednesday.

He had planned to stay in Atlanta, rather than fly home between. Now his son was on a ventilator in Eugene, Ore., and his destination was thousands of miles away.

He was still contemplating flying to Atlanta and returning to his son's side by midweek.

Bob Jr., 34, arrived at 2 a.m. Friday. John later, at 1:45 p.m. Bob Jr. was controlling himself with difficulty, his eyes red from tears. "Hi Bob!" Tom wrote. "How was your flight? I must look like shit, everyone sheds a tear their first time in here."

"You've got to work on your printing, " Bob said.

John, 26, had gotten over his crying, for the moment.

"A couple of things you should know, " Mrs. Fox said. "He's got tubes coming out of everywhere, and he's asleep."

Seeing John, Tom began to write, but dozed off in the middle of a sentence. He had just had a dose of morphine.

Mrs. Fox took the clipboard from his fingers and began to read out loud. "Howdy, " it said. "I hate speeches."

A hospital's intensive care unit is a strange encampment in another world. Family gathers and waits for word of hope or heartbreak, passing time in the waiting rooms, some members sleeping on the floor or in chairs in case "something happens." Some piece together huge jigsaw puzzles, supplied by the hospital, as they wait.

Eleven people gathered for Tom Fox. Besides his parents and two brothers, there were Linda Hilligoss, Joe Yusca, Bonny and Tom Baratta, 1- year-old Sam, a photographer and a reporter. Most of the talk was about Tom.

The days took on a sort of routine. At 8:30 a.m. or so, the doctor would deliver his state-of-the-patient address. Soon, one person or another would stop in to see Tom. At midday, people would straggle off in small groups for lunch, then come back in the afternoon. Joe Yusca, who had not seen Tom in 10 years before he had come to Oregon, began his own routine.

Inexorably, some of the gossip began to focus on this. Tom had appeared happier to see him than anyone.

When Tom came to Oregon, Joe got to know him once again. He was no longer threatened by Tom's feelings for him, and he wanted to give something back to this friend who was dying. So he would come in the evening and sit with Tom all night.

The nurse in Bonny Baratta emerged in talks with the intensive care nurses, who would give her detailed updates on Tom's condition. Then Bonny would gently pass the information along to Tom and the family.

It was Bonny who introduced Tom to the prospect of death.

"Slowly but surely they are having to turn up the settings on your ventilator, and the longer you are on the ventilator the less chance there is that they will be able to get you off, " she said.

"I figured that already, " Tom wrote. "If they take me off the vent [sic] what will happen?" "It will be like the other night - you would have less and less oxygen but it would be more comfortable because they would give you morphine and Valium. But you would die, maybe in one hour, maybe longer.

I don't know how long it would take. Do you understand what I am saying?"

Tom moved his hand in a faint gesture of assent.

"The reason we wanted to tell you is that you're still real stable.

If you got disoriented and couldn't make a decision to turn off the ventilator your parents would have to do it.

"Are you awake? Can you tell us what you're feeling? You don't have to make any decisions. We just wanted you to know what is going on."

Tom began coughing, an unearthly heaving without sound because the ventilator tube was passing through his vocal cords. An alarm shrilled. A nurse came running and suctioned some saliva out of his throat.

"Two hours off the machine - goodbye, " Tom wrote when he recovered. "What are the alternatives?"

"There are portable ventilators, " Bonny said. "But I don't think you will ever get off the ventilator because it damages the lungs. None of the doctors think you will ever get off.

"In fact, the doctor told your mother this morning that many AIDS patients are never put on ventilators because they never get off."

"Well, at least let's wait a little, " Tom wrote.

"Tom, you know there's no hurry. You could help your parents make a decision just by giving them some guidelines."

Tom began coughing again. He nodded assent.

The alarm sounded; a nurse came running.

As the hours passed, Bob Fox Sr. became more comfortable spending time with Tom. One day he canceled his business trip.

He said it was the first business trip he had canceled in more than 20 years - but he wanted to be with his son.

John was the first to notice the change in his father.

"It was like a flower opening, " he said. "If he had anything to face it was always a matter of business came first. He'd throw himself into business. I love Dad to death but I think he always had trouble being there when maybe we needed him.

"Finally, he's chucked the business. It was beautiful to see but at the same time hard to deal with. For 26 years, you think this love was never there for you; then you learn how incredibly strong it is, and what a fight it was for him to express it. It made me proud of him."

In Atlanta, Johnnie had been told about Tom and he was upset. He said he had decided to stop all medication for his tuberculosis and continue taking morphine.

He had resigned himself to dying. "I took 14 of 15 radiation treatments and they only made me feel sicker, " Johnnie said. "If I could have a week of happiness I'd rather have that. I've had enough."

His roommate Pat was dying in the next room.

Bonny visited Tom later and he asked for her help.

"A pretty tough choice. What would you do?" he wrote.

"I don't know, " she said.

She agonized over the question later. "I really want to tell him to let go, but how can you tell someone that?"

Tom made the decision himself, wrote down his thoughts and gathered his family around the bed. He wrote that he wanted the doctors to decide whether his pneumonia was treatable. If so, he wanted antibiotics. If not, if the main problem was lung cancer, he wanted to turn the ventilator off.

"We don't want to lose you, " his mother said, taking off her glasses to wipe her eyes. "We don't want you to be tired of living the way that you are. We want to hold on to you as long as we can. You know that."

"Your holding on to me makes it more difficult for me to let go, " Tom wrote. "When Jacey died Bonny held on to her for two months. When she realized that the decision did not belong to her, she let go and Jacey passed that night."

"Will you tell us when you think it's time to go?" Tom nodded.

"I don't want to let go, " Bob Jr. said. He was holding Tom's arm and crying.

John said, "Today, when I walked in here - I found it hard to look at you like this. What kind of life is this?" To their astonishment, Tom looked amused.

"Hey, " he wrote. "This is high-tech equipment."

On Sunday, July 9, Dr. Matthew Purvis met early with the family in a small room usually reserved for clergy and doctors that the Fox family had taken over.

"On paper every day it looks a lot worse than it did the day before. It means that each day he gets worse than the day before. He could be drifting into a coma unless a catastrophe, like a heart attack, occurs sooner.

"My opinion is it will be a continual downhill drift. He won't open his eyes when you talk to him, he won't write notes.

"He will start bleeding internally soon. . . . If that is left alone, it will shorten the course. Otherwise, you would have to prolong the living - and the dying. From an ethical point of view, it is felt that it's not necessary to prolong the dying by bringing in any treatment that would not help him survive."

"Do you think he's capable of making a decision?" Bob Fox Sr. asked.

"Now I think he is, " the doctor answered. "He said if he couldn't, the decision would fall back on you.

"The minute he's no longer mentally competent to make a decision, it's up to you folks, and I will tell you that I would honor it and take him off the ventilator. I did tell him that if he decided to go off it, I would make him totally comfortable so he would not feel that he is suffocating."

"I think, " said Doris Fox, "that he's reached an acceptance that he's ready. I think last night when he took my hand from his and put it into Bobby's hand, he was saying to me, 'Now, Bobby needs you.' "

The day before Tom died, his father sat in the intensive care waiting room crushing a styrofoam cup in his hand, taking stock of what was to come. "I think I will say my goodbyes before, " Bob Fox Sr. said.

"I can't stay there."

He recoiled with horror at the thought - he had never seen anyone die before. And this was his son.

His youngest son concurred. "I don't want to see him struggling, " John said.

With a minor rebellion on her hands, Doris Fox spoke to her husband and son. "What if he wants to hold your hand?" she asked. "Do you think I want to be there?"

A moment of startled silence. This was not the fragile, shattered woman who had withdrawn into the security of her home rather than face a world in which her sons could be addicted to drugs. Over the past two years, she had found a source of strength she did not know she had, and now she used it to buttress her family.

At the end, they would all be there - her husband and sons - so that Tom could look up, if he chose, and see his whole family there by his bedside.

A few months after his diagnosis, Tom had talked about how it had changed him. "If there has to be one positive thing about having AIDS, it is the fact that I am a better person, a more loving person, " he had said. "At this moment, I am most certainly living with AIDS and not dying of it."

The change in his family was as profound. The family's disappointment over Tom's homosexuality, over his drug abuse, was gone.

"We've put aside the thought of who we thought Tom was, and accepted him for what he is, " his father said.

Lying before them was someone they had just begun to know - a man who had learned to live fully, despite pain and disfigurement and without the street drugs that had once sustained him. They were proud of him, they loved him, and now his courage sustained them.

He decided his future with one word - "tomorrow" - written on his clipboard.

"Are you tired?" Mrs. Fox asked.

"Yes, " Tom wrote.

"Do you want the ventilator off?"

"Yes."

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