Brave and afraid and heading down the longest road

By Jenna Russell | Globe staff

Photos by Suzanne Kreiter | Globe staff and Gretchen Ertl for the Boston Globe

About this series: For the past 18 months, Michael Bourne and his family granted the Globe access to his battle with chronic mental illness, through recovery and relapse. Many of the events described here were observed firsthand; others were reconstructed through interviews with family members, friends and neighbors, and official records. The goal was to describe the struggle of one family, coping with a challenge that is known by many.

First of three parts

The cars made a wet rushing sound as they swept past him, close enough that he could feel their motion in the air. He was certain if he tried, he could reach out and touch them. Mike Bourne stretched out both arms, fingertips extended. He was walking in the middle of the busy street. The yellow line on the pavement told him where to go. He thought of it as the yellow brick road. It would take him somewhere, he knew, somewhere beautiful.

A few horns honked, and he smiled at the drivers. He felt calm and peaceful, powerful and focused. Snow was melting in the gutters, sparkling all around him. The air was cold, still winter, but the sun was warm. He was on his way, the road stretched out before him.

Peggy woke early in the quiet apartment. She gave herself plenty of time to get ready and get to the hospital. Her son Mike was getting out this April morning, last year, and she didn’t want to be late, didn’t want to take the chance that he would start to worry. It had been two months since his mad, euphoric march down the center of Dorchester Avenue. He’d been off his medications and was on a manic spiral that ended in a psychiatric hospital in Quincy. He’d spent the last seven weeks there. Now, he seemed better than he had in years, calmer and more reasonable. But Peggy didn’t want to risk upsetting him. She knew that sometimes she could set Mike off. This time, she was determined that things would go smoothly.

She paused for a quick look around. Everything was clean and ready, the freezer stocked with his favorite chicken wings. She scooped up Mike’s cigarettes — he would want them right away — and hurried out the door to her car in the driveway.

Mike was 33 years old. He’d been in and out of institutions for half his life, since he first got sick when he was 17. His diagnosis had changed over the years — it was schizophrenia, then bipolar disorder, then schizoaffective disorder — and his medications were in constant flux. Things stayed good for a while, then went bad again. Now Mike’s medications seemed to be working, and he was saying that he wanted to stay on them — a view he didn’t always take. But there had been so many days like this, so many hopeful new beginnings.

Often, when bringing him home from a hospital stay, Peggy saw again the man she knew: funny and charming, intelligent and sweet. And then she watched that man disappear, receding from her as though into the depths of a lake. He was replaced by someone else, whose thoughts she did not understand. Mike suffered at times from delusions. His mother never feared him, but some of the neighbors did, interpreting his loudness and profanity as threatening.

Peggy had lived for years with the constant worry. She had lived with the complaints from neighbors and the calls from the police in the middle of the night; she had coped with Mike giving all his money to strangers or throwing all their food away, believing it was poisoned. She had watched his friends grow up and get jobs and get married, while he remained trapped in place. Yet she still believed that one day, the right treatment would free them. Mike would stay well, and she would have her son back.

She pulled into the hospital parking lot and stepped out of the car. It was early April, the branches bare. Peggy hustled into the lobby. A nurse got up from the desk and went to get Mike. He was in a magnanimous mood, saying his farewells, giving away his socks and other stray belongings on his way out the door.

He smoked one cigarette after another on the way home. He talked about the uncomfortable conditions in the hospital — the hard mattress, the locked bathroom. When Peggy turned to check traffic behind her before changing lanes, Mike told her not to take her eyes off the road.

“Use your mirrors,” he instructed.

They arrived home at the house they rented on a quiet wooded street. He settled in on the big blue couch in the living room. Peggy fussed over him briefly, then went to work, at her bookkeeping job at a small manufacturing company. Later on she would fill his prescriptions. She lined up the bottles in the kitchen, in an old wooden spice rack she had painted white. Every morning before she went to work, she took down the bottles and counted out the pills — one for depression and another one for anxiety; a third to fend off psychosis and a fourth that was supposed to stabilize his moods. There were others too, to combat side effects. She piled them all in a Dixie cup and carried it to him in the living room, placing it beside him on the table.

There was nothing unique about their morning ritual. Across the state, across the country, one in four families copes with a mental illness. Thousands of young men and women live with these conditions; thousands of caring, committed parents and relatives help to watch over them. These individuals don’t need to stay in a hospital — with the right medicine, and other support, they can manage, even thrive. Some find it easy to take the medications, but many others struggle, as Mike has. Because the pills have unpleasant side effects. Because the medication just makes them feel bad. Or, sometimes, because they’re not convinced they’re sick. These are the patients nobody knows what to do with, who flood emergency rooms and jails and courts.

In Massachusetts, as in other states, mental health care has largely moved out of hospitals and into communities. In many ways, this is better for patients. Still, stability can be elusive; setbacks common; the illness is brutally persistent. And so much falls to family members. In a crisis, they may find themselves adrift — struggling to navigate a disjointed, often dysfunctional system, unable to get the help patients need — either because the help isn’t there, or because they can’t find their way to it.

When Mike stopped taking his pills, trouble typically followed. He would disappear and his mother would fear the worst. There would be visits from police, trips to the ER, and court appearances. The job of managing the chaos fell to Peggy, but she had no formal, legal role, because her son was an adult. She was on the outside looking in when doctors, judges, and social workers made decisions. Yet she was the one who was with Mike every day.

Peggy was deeply religious. She knew if she prayed, God would help.

She prayed that this time would be different. It had to be.

Mike felt the weight of the winter back upon him, when he had stopped taking his meds and ended up in the hospital. He’d been arrested late on New Year’s Eve, after blasting his radio and dancing in the street. He’d been feeling good, confident and fearless, the way he always did without his medications. The cops had showed up and assumed he was drunk. They didn’t listen when he told them he was sober; he got frustrated and called them Nazis. That had been wrong; he understood now. He just wanted to put that night behind him.

The judge studied some papers and looked up, regarding Mike benignly from between the glow of two old-fashioned glass lamps.

“Are you taking your medication?” the judge asked him.

“Yes, sir,” Mike said.

“And are you thinking clearly?”

“I believe so,” answered Mike. He hadn’t meant to be funny — only honest — but something in his earnest tone struck a comic note. Laughter rippled through the crowd behind him.

“Well, only one person in this courtroom would know that,” the judge said.

An assistant DA read from a police report, recounting the facts that had led to his arrest. The charge was for “obnoxious behavior” undertaken “to cause public inconvenience.” Mike pleaded guilty, and the judge issued the sentence: one $100 fine for disturbing the peace; another $100 for disorderly conduct.

A few minutes later, in the hall outside the courtroom, his mother and his girlfriend were beside him, beaming. Since Mike had come home, Peggy had found herself walking on eggshells, wondering if his recovery was as real it seemed. This day had been a test. In the past, Mike might have argued with the judge, or turned to flash the peace sign to the courtroom. Seeing him stand there now, calmly trying to wipe his slate clean, Peggy felt ecstatic with relief. She was almost giddy as the three of them stepped outside the courthouse into the raw and chilly April afternoon.

It was Friday. Peggy had taken the day off from work. Monday was Patriots Day, a holiday. With a few precious days off and the weight of Mike’s sentencing gone, Peggy felt freer than she had in weeks. She drove them home, and they settled into the living room.

Mike and Renee talked easily together, comparing coping strategies for getting through bad days.

“You imagine your bad thoughts are fluffy clouds,” Mike said, “and the clouds break up and float away.”

“Or you picture your mind like a Teflon frying pan, and the bad thoughts slide right out,” Renee chimed in.

Peggy watched them from across the room, savoring the moment of lighthearted normalcy. There had been little of that in recent memory, as her husband battled bone cancer and died two years ago. Richie’s death at 58 had been excruciating. Yet in the midst of it, Mike had been at his best, caring for his father with attentive tenderness. They had all been struck by it: how Mike had stepped up and found an even keel at the very moment when they needed him the most.

His father had taught Mike to play guitar as a kid. Richie loved the Beatles, and so Mike did too. Later Mike worked as a cab driver, again like his dad.

Mike wondered if his father looked down on him from heaven, and why he didn’t intervene to ease his earthly struggles.

“Maybe I wasn’t a good son,” Mike said.

“Yes, you were, Mike,” his mother and girlfriend assured him in unison.

“You brought a lot of happiness to people,” Peggy told him.

“And a lot of misery,” Mike added.

A pained look flashed across his mother’s face.

“We all wish you didn’t have this illness,” she said in a soft voice.

“You imagine your bad thoughts are fluffy clouds, and the clouds break up and float away.” — Mike Bourne

A part of Mike resisted the idea that he was ill. The real problem, it seemed to him, was that the world had become restrictive and intolerant of people who were different. He meant no harm to anyone — if others felt threatened by the things he said or did, that was their problem to solve, not his. He’d told his mother he would keep taking his medications, and he meant to keep his word, but that didn’t change the fact that he was bitter.

He hated the drugs, with their vile side effects: insomnia, weight gain, constipation, impotence. The new meds were causing painful blisters on his skin. More than that, he felt dull. Other people didn’t understand — when he took the meds, he felt small and hollowed out. He craved the easy joy he felt when he ditched the pills — the release he’d felt when he’d left the Dorchester hospital and followed the yellow line home. That had been the start of another disastrous unmedicated odyssey, proof, his mother and Renee insisted, that taking his medication was worth it, because the pills would keep him out of the hospital, and jail. Some days he agreed, but other times he wondered. Wasn’t feeling good the most important thing? Why should that be denied to him?

Mike wore sneakers and a Red Sox cap; he held an enormous Dunkin’ Donuts coffee in his lap. He had brought an oversized coffee for Jill, too. Drinking coffee helped Mike feel sharper, more alive, when he was on his medication — it was one of his few pleasures — but his mother worried that it also made him manic.

“People have questioned your coffee use,” Jill reminded him sternly.

Mike dodged the question, his tone playful. “I’m not a bad guy,” he said.

“No,” Jill allowed, giving in to his ploy. “I think the world of you.”

The patient and the therapist knew each other well; Mike had been seeing her for more than a decade. Mike liked Jill, and he believed she liked him. She often seemed to understand what he was feeling, and she had sympathy for his situation, both the relentless undertow of his condition and the way the health care system, in the past, had sometimes failed him. Mike liked how it felt when someone defended him. Jill was a guide who would try to keep him on track, reminding him what he needed to do to stay well.

Both of them knew what usually happened: Mike would start to feel bad, because of his meds, and so after weeks or months he would stop taking them. At some point in the past, he had been prescribed Percocet for pain, and found to his delight that it lifted his mood, too.

“I’m not a bad guy.” — Mike

Relatives had warned him the painkillers were addictive, and that they might interfere with his prescribed medication. Mike didn’t know if that was true or just a theory. All he knew was that the pills gave him some relief, made his life briefly feel enjoyable again.

He wasn’t taking any painkillers now. But tomorrow he was going to the doctor, he told Jill. Months ago, doctors had cut out a piece of his tongue to test it for cancer. The biopsy results were inconclusive, and the pain was still excruciating.

The therapist looked at him, her expression worried.

“If you can get painkillers tomorrow, will you refuse?” she asked.

Mike felt frustration flare. No, he told his therapist. If pain pills were offered, he would take them.

They sat in silence, staring at each other. The murmur of voices from other therapy sessions seeped through the walls.

“This will be a big test for you,” Jill said.

“Everybody’s after me,” he told his mother.

Peggy remembered turning to look at him, startled. “What do you mean?” she asked.

They’d been waiting for him when he got off work, he said.

“Did you see them?” she asked him, confused.

“No,” Mike told her. “But I knew they were there.”

The terror of that night was still etched in her memory: waiting in the ER, thinking he must be on drugs; trying to grasp what it meant when it turned out he wasn’t. Mike spent weeks in a psychiatric hospital before he was released, in time to graduate with his high school class that spring.

Everyone hoped it was a blip, an aberration — that he could resume his normal adolescent path, headed for adulthood and living on his own.

Instead, it was only the beginning.

His family remembered the beautiful child he had been. That lovable, clever boy was within him still — the one who put on shows, who they called “Mr. Hollywood.” But the darkness had descended, and they had grown weary of the endless churn of chaos.

And now it was happening again.

Watching Mike closely as April turned to May, Peggy felt her normal worry bloom into unease. Mike still seemed OK, some of the time. But he had started making strange phone calls again.

Not sure what to do or where to turn, Peggy called her 56-year-old sister-in-law, Rhonda. She was the curly-haired youngest sister of Peggy’s late husband Richie. Unlike Peggy, who tended to withdraw from confrontation, Rhonda was forceful, and tenacious as a bulldog when she sensed injustice. A social worker at Fuller Mental Health Center in Boston, she worked with psychiatric patients every day. She was feisty and resourceful and determined, opinionated and active in state politics, and she understood the mental health care system far better than most people. She was married with a daughter of her own, but Michael’s struggles always hit her hard.

“How can he be getting sick again already?” Rhonda said when Peggy got her on the phone.

Peggy told her what was going on — that Mike was consumed by conspiracy theories. He believed former president George W. Bush had been involved in the Sept. 11, 2001, attacks, and he wanted the truth to come out. Only then could America be great again, he said. But he feared the Bush family would seek revenge. Mike had called the local police and warned them to wear their bulletproof vests, in case assassins came after him. He had called the FBI and White House to offer his help.

Rhonda had received phone calls from him, too. She and Peggy recognized what was happening — the start of another downward spiral. If they didn’t stop it now, it would soon get worse.

Rhonda ticked off possible causes of his deterioration. Maybe the medications weren’t working. Maybe the doses weren’t high enough. Or maybe he wasn’t taking them at all. Even though Peggy tried to keep an eye on him as he tossed back the cup of pills most mornings, it was possible he was just pretending.

“How can he be getting sick again already?” — Rhonda Bourne, Mike’s aunt

Peggy wondered if the shot of Fluphenazine, the antipsychotic drug that a nurse came to give Mike every three weeks, was wearing off too quickly. She had already called the nursing agency and asked if he could get another shot a few days early.

“They said no,” Peggy told Rhonda despairingly. “They said they’ll be here on Monday.”

Rhonda was frustrated. It was often hard for family members to get a response — even though they were the first to know when things went wrong.

Rhonda knew from personal experience that wellness was in reach. She, too, had been struck by mental illness at a young age, but she had learned to manage it adeptly. She had tried to help Mike reach that point too, so that when his illness flared he could take steps to control it. But Mike only resented Rhonda’s involvement. Stay out of it, he told her, often harshly.

Rhonda did not see staying out of it as an option.

“Let me try,” Rhonda said into the phone. She took the number of the nursing agency, hung up and dialed it. The woman who answered seemed flustered by her request. “I’m not used to family members calling,” she said. Rhonda asked to speak to the psychiatrist on call. But when her phone rang again, it was the staff member calling back.

The answer was no, the woman said. Mike would have to make it through the weekend.

That afternoon she took him to Norwood Hospital to visit his girlfriend, Renee, who was recovering from a blood clot in her lung. Getting ready to go, Mike put on his suit coat. A spark of worry flared in Peggy as she watched him: Mike often wore his suit when he was getting sick. She braced herself for what might lie ahead. Mike acting up inside the house was one thing. Out in public, it could get him in trouble.

At the hospital, standing in a hallway, he addressed a doctor walking briskly by.

“How are you?” Mike said. “I’m running for president.”

Later, when he went outside for a cigarette, he refused to stand in the designated smoking area. “Over here,” Peggy told him, gesturing. “No,” Mike countered, “over there.” He took her hand and pulled her with him.

In the car on the way home, he started yelling.

“You’re going to end up back in the hospital,” Peggy warned him.

“I don’t care,” Mike said.

At home that night, he yelled again after he caught Peggy on the phone, conferring with Rhonda. He called the police to complain about their meddling.

The next morning, though, he seemed a little better. He went out for a walk, and again Peggy joined him. Encouraged by his calmness, she dared to ask a question.

“Are you taking any drugs?” she said.

“No,” Mike answered.

“Then why are you so manic?” Peggy pressed.

Mike told her that she should go home then, so she did.

All that afternoon she watched him from a distance. She had to work in the morning — she didn’t have a choice — so she chose to hope that everything would be OK. The nurse would come tomorrow to give him his shot; maybe, when she got home, the symptoms would be gone.

Mike was up early the next morning.

“I’m going to check your car for bombs,” he said.

Peggy gathered up her keys, her purse, her lunch. She tried to steel herself for the hours of worry ahead.

When she got home that night, the house was empty. He was gone.

Jenna Russell can be reached at jenna.russell@globe.com. Follow her on Twitter @jrussglobe.