Mental illness on Martha’s Vineyard: Life and death with severe bipolar disorder

The story of an Island family’s struggle.

— Matthew C. Kramer

The Times has run several stories on Vineyarders suffering with mental illness. For others, see: bit.ly/MVMentalillness

Leslie’s husband suffered from bipolar disorder — a mental illness that can cause inexhaustible exuberance in someone, but also insurmountable sadness and hopelessness. But it is her daughter she thinks about every day.

Leslie was married for six months when her husband was hit. He was unable to sleep and had incredible amounts of energy. He was filled with brilliance and creativity. He used the energy to invent things.

“I was really impressed with the genius,” she said of her husband. “It was amazing to me that he could go down to the hardware store and put together an engine.”

He was in his mid-twenties at the time. Neither of them knew that he was sick with bipolar 1 disorder — that his abundance of unflagging energy was the result of something called a manic high.

“But then,” she said, “it escalated. It escalated to beyond genius to where he lost touch with reality. He was just saying frightening things about sacrificing my daughter and just obviously was not in a right mind at all.”

Leslie ran away with her baby daughter, so that he could not find them. Later, she received a call from the police. Her husband had been picked up for telling someone that he had sacrificed his family.

She contacted Milton Mazer, a psychiatrist on the Island and then head of Martha’s Vineyard Community Services (MVCS). Dr. Mazer explained that her husband was suffering from a mental illness called bipolar 1 disorder and that his erratic behavior was a result of the illness. The illness could be treated with a medication called lithium, he said, and her husband could lead a normal, functioning life.

He was assessed and placed in a hospital where he was given lithium. He started to recover and soon was well enough to go home. But, not long after, he fell into a severe depression.

“I have never seen anyone like that … he had a very difficult time getting dressed, getting out of bed, putting on his shoes, and that went on for months,” Leslie said.

At the time, she viewed her husband’s lack of ability to function day-to-day as a weakness. “I was of the mindset of ‘What is wrong with you? Just kind of pull yourself together’ — which was nothing but detrimental because I knew nothing about the illness.”

The depression lasted about a year. He was able to return to work. He was a fine and respected craftsman in the community. He built and worked on wooden boats and homes. He was okay for a while and was able to function. But the bipolar 1 had not gone away. It lay quietly in wait. And after a short while back at work, he had another episode.

It would become a vicious cycle that lasted approximately 20 years. He would become sick. He would be admitted to the hospital and released after stabilizing on lithium. He would return home and go back to work for a while. He would stop taking the lithium when he felt well again — and because the lithium made him feel flat emotionally. Then, he would have another psychotic episode, usually after a bout of drinking or using marijuana or other substances. And he would go back to a hospital.

“Every time, it seemed a little worse. His depression seemed worse. He’d become very suicidal, but then he would get better and work again. He was very good at what he did, and he was very smart,” Leslie said. “I can’t count the number of times. So many different hospitals.”

Eventually, they divorced. Two and a half years later, Leslie was contacted by the police in Florida. Her ex-husband had been picked up during one of his manic highs. Then, for approximately three years, he was missing altogether. Recently, she learned that after another severe episode, he had been admitted voluntarily to a hospital, where he stayed for seven months.

Summer

Leslie and her husband had five children together. One of their daughters, Summer, would also suffer from bipolar 1. Summer was a happy child who loved to help people. She would often run over to a neighbor’s house to play with a little girl who was handicapped. And she helped older folks with Alzheimer’s.

Leslie said, “I remember my husband’s mother telling me [that he too] was a very good, happy young man as a child.”

It was night and day when adolescence hit. Summer became rebellious and defiant. She did not take an interest in her classes, other than a writing course. Leslie believed Summer needed an alternate educational route. She wanted her to be mentored in her areas of interest. She took Summer out of school and moved her to New York City to live with an older sister.

Summer lived in New York for several years. She pursued fashion and modeling and learned about the business. She very much enjoyed the city — all of its activity and the other young people she met.

She had an outgoing and fun-loving personality. She traveled through Europe by herself. She went to Brazil and Bali by herself over the winters to surf. She made people laugh and was popular. She was the subject of a show called “Summer in the City,” and for some time was followed around by a camera crew. She was videoed climbing up a telephone pole to interview a repairman who happened to be at the top.

She was very happy; she had a job as a personal stylist. She went out a lot, had a boyfriend and other friends who cared very much about her.

When she was 21, Summer had her first psychotic episode. She thought a former boyfriend was a terrorist and that he was bombing the country. She could not be reasoned with and was unable to work. Her boyfriend called Summer’s family. He was very upset and shaken; he had never experienced anything like it and did not know what to do. Summer’s family asked him to drive her home.

This was the beginning of Summer’s battle with full-blown bipolar 1 disease.

She was placed in Cape Cod Psych when she came home but released after three days. The hospital said her insurance was up and she was well enough to go. Leslie could see that her daughter was not well and tried to have the hospital keep her longer. The hospital told her, “Sorry, there’s nothing we can do. You can appeal it.”

Back home, Summer continued to have episodes. “We’d find her in strange neighborhoods talking to people at their doors thinking they were a lost aunt that she never had,” said her mother.

Four months later, Summer fell into a major depression. It was, according to her mother, as if she’d suffered a stroke. She had difficulty functioning in areas of daily living like putting on her clothes. “[She was] in her room for about a year. She didn’t like to come out of her room at all. She would come out quickly and grab something to eat and go back in.”

Summer’s family rallied around her. They all loved her dearly. One of her older sisters bought the rest of the family books on bipolar 1 so they could learn what Summer was going through. Her brother set up her room so she would be comfortable and could watch TV. Everyone did what they could.

Summer saw a doctor regularly and took medication. She had some insight into her illness from her experience with her father. After about a year, she seemed better.

She flew out to California, where her mother was visiting another sister. When she arrived, her mother and sister could see right away that something was not right. Within a few days, her mother said, Summer was no longer making any sense.

They learned that the local police had a team of experts who could assess someone with a mental illness. Concerned for Summer’s safety, they called the police. She was assessed by the team and placed in a hospital in San Diego.

The doctors and nurses at the hospital were afraid. They had seen only one other case of bipolar 1 as bad as Summer’s. Her episode was so severe that for a week they were unable to bring her down from her manic high. After some time had passed, one of the doctors called very excited and said the team was seeing some improvement.

Summer stayed in the hospital about two months. Her brothers and sisters wrote her encouraging cards and letters every day. The cards were all over her room. Her mother visited regularly. Summer was somewhat stabilized.

The doctors and nurses thought it would be best for her to live in a mental health community in California for a year, where she could begin to recover. There would be a team of doctors and counselors there. The community had its own campus. The social workers working with Summer begged MassHealth to pay the costs, but MassHealth would not allow the expenditure beyond the two month hospital stay. Summer was medicated and flown back home. She spent another summer and most of a fall in her room.

When she was well enough, Summer moved to upstate New York to live with her eldest sister, the sibling who had bought everyone the bipolar 1 books and was a huge support. Summer did all she could to take care of herself. She attended AA meetings. She went on walks with her sister. She called home frequently. She was in good spirits.

In a phone call home, according to her mother, Summer said, “Mommy I got a new dress, and I’m going to a Valentine’s Day dance, and there’s a boy who I hope is going to ask me to dance.” The boy did ask her to dance, and they started dating. She was 23 years old.

Leslie was in Washington, D.C., when Summer called late one night upset, in a very depressed state, and crying. They talked for a long time. Her mother said she would be there the next day.

She traveled to upstate New York and stayed a few days. Summer told her right away that she had exaggerated the extent of her depression. She said she had called a friend in the morning and gone for a walk. She felt so much better and was doing well. Leslie found a hospital nearby, but they wouldn’t have room for Summer for a few months. They gave her an emergency number that Summer could use if she were having a really tough time.

“She and her boyfriend looked good, and they seemed quite happy,” said Leslie. “We had a lovely meal with her and her sister and her family.” Leslie returned home.

Summer kept in touch with her mother after the visit and seemed well. Approximately three weeks later, her mother tried to contact her. She was just worried. She had run into another mother who had lost a child to an accidental overdose of pills. She was unable to reach Summer.

Summer. — Courtesy Jonathan Burke

Two days later, Summer’s sister called. Summer’s boyfriend had found her when he came home from work that day. She had taken her life.

“It was like an atomic bomb went off for the whole family. Everyone suffers from it to this day,” said her mom. Not a day goes by that her family does not think of her and miss her.

Leslie would like all parents to learn and be helped by Summer’s story and encourages all parents to become educated about mental illness and the grief caused by the sudden loss of a loved one.

“Mental illness,” she says, “is life and death. We don’t want to believe that this can happen to our own children. But it needs to be taken seriously. It is a fatal illness.”

Summer, she says, will always be cherished by so many.

 

Reach Out for Help

MVCS Island Intervention Center: Provides urgent care, brief interventions, assessments, and immediate access to appropriate services for both mental health and substance use disorders. In case of a mental health emergency, their team can be accessed 24 hours a day through their answering service at 508-693-0032.

MVCS Island Counseling Center: Provides support for those struggling with mental illness, addiction or crises. Contact them at mvcommunityservices.com/islandcounselingcenter or 508-693-7900, ext. 290.

Island Wide Youth Collaborative: Provides support to families and children in crisis. Contact them at mvcommunityservices.com/iwyc, mvcommunityservices.com, or 508-693-7900, ext. 400.