December 22, 2005

By Diane Chiddister

Peter Jensen and his daughter, Lila, when Lila was a baby.

Some people might view Peter Jensen’s life the past several years as a tragedy, but he didn’t see things that way. Diagnosed in the prime of his life with ALS, or Lou Gehrig’s disease, Jensen was finally unable to move, to talk or even to breathe by himself before his death two weeks ago.

But in a situation almost unimaginably difficult, Jensen chose not to despair. Rather, he chose to laugh as often as possible, to find joy wherever he could — from silly songs to the sound of canaries- — and to relish the abundance of kindness around him.

The story of Peter Jensen’s illness and death is a story of courage and grace. And, in this holiday season, it is most of all a story of love.

Last week Jensen’s wife, Kitty Jensen, and six of the many caregivers who worked with him in his last weeks and months met to talk about their experience. The caregivers — Maureen Dawn, Liz Porter and Liz Mersky of Sowelo, massage therapists Jaimie Wilkie, Marybeth Wolf and Nancy Peters, and Peter’s mother, Martie Jensen — learned many things from Peter, they agreed. Most of all they learned that even extreme hardship needn’t diminish the sweet gift of each day.

“He had so many limitations, but he lived so fully,” said Liz Porter, who helped care for Peter as part of Sowelo. “I have a fully functioning body and yet I stop myself. Since being invited into this household I’ve learned to challenge myself. Am I glad to be alive? If I am, then I need to show it.”

Mersky, also a part of Sowelo, began visiting Peter about six weeks before his death, after he had lost most bodily functions.

“I knew he was someone who couldn’t move, couldn’t even go to the bathroom,” she said. “I did not expect to find a content, happy person. But that’s who I met. Each day I went home full of wonder.”

Peter also taught them to push themselves, the women said, to go beyond what they thought they could do. Knowing that his life was literally in their hands, they started out worried that they wouldn’t respond adequately to his medical needs. But Peter, always trusting and calm, assured them that they would be up to each challenge, and they were.

“I can’t tell you the impact that had on me,” Mersky said about her response to one medical crisis, which came out well. “It shifted everything in my life. It unstuck me in lots of ways.”

Wolf felt pushed by Peter to sing. He loved being sung to, she said, and she wanted to sing while she gave a massage, but never felt confident about her voice. Finally, she said, she made the excuse that the only songs she knew were the Catholic hymns of her childhood.

“He just said, ‘that will do,’ ” she said, and so she sang them. Over time, she learned to love singing, and the night before he died, Wolf said, she sang him a lullaby.

Hearing the Catholic hymn story last week, the seven woman laughed. The story sounded so like Peter, they said, with his pushing and teasing at the same time.

Peter loved to tease, and he enjoyed being teased, they said. Mersky, who always thought of herself as serious and intense, found that around Peter she became a comic, she said.

“Everyone who came, he wanted them to laugh,” Kitty Jensen said. “He wanted to laugh with them.”

And he didn’t mind poking fun at himself or his frailties. Peters said that she, like everyone else besides Kitty, had a hard time understanding Peter’s speech in his last weeks. Once, she told him something she thought he had just said that turned out to be wrong.

“He said, ‘that’s funnier, let’s go with that’,” she said.

And while he could be a tease and irreverant, he always showed his gratitude to those who cared for him, Porter said.

“As hard as it was for him to speak, he took the breath and the effort to say ‘thank you’,” she said. “He said thank you for everything.”

While they were moved and astonished by Peter’s courage, they were equally moved by Kitty’s devotion, the women said last week.

“She’s my hero,” said Mersky. “Her steadfastness and calm made me so comfortable.”

A molecular biologist, Kitty Jensen took a leave from her job at Ohio State University a year ago to be with her husband when he needed around the clock care. According to the other caregivers, Kitty was most often with him, unless one of them or Peter’s mother was visiting. And along with physically being there for him, Kitty tried her best to help enrich Peter’s life, by inviting musicians and musical groups to play and sing for him, along with arranging massages, which he loved.

Both raised in Yellow Springs, Kitty and Peter were married 31 years. Growing up, they knew each other’s families, but didn’t know each other well, she said. But they reconnected as young adults when they met at Antioch College folk dances.

She was drawn to Peter because he was a good dancer and had a wonderful smile, she said.

The couple had two children, Lila, now a freshman at Earlham, and Kumar, a YSHS student, and lives full of gardening, work and friendship when Peter was diagnosed with Lou Gehrig’s disease six years ago, Kitty said.

According to his mother, while the diagnosis was hard to hear, Peter was accepting almost from the beginning. He had had a good and full life, he told her, and that made it easier to live with the illness that he knew would finally take his life.

After being ill for two years, Peter had to quit his job in industrial robotics at Motoman in West Carrolton. Knowing he would be incapacitated at some point in the future, Peter worked on making their house in the Vale more appropriate for his needs. He remodeled the bathroom so that it would be accessible to him when he was bedridden, and designed a pulley system that could carry him from the bathroom to bed.

When the disease progressed and Peter could no longer pursue his passion for gardening, he resumed his boyhood interest in knitting, Kitty said. And when he couldn’t move his body, he worked on his mind, and committed poetry to memory.

Most of the time, he remained cheerful, Kitty said. When Lila left this year for her freshman year at Earlham, he was saddened, but he insisted that she go and, when she wanted to come home early, he wouldn’t hear of it, she said. He also took pleasure in the many friends who rallied to support the family, bringing in meals, visiting or reading to him.

In the past year, Peter was totally dependent on others for his physical needs as he continued to decline. But his mind remained sharp and lively, and he began thinking more about how he would die. He never feared death, Kitty said, and saw it as a natural part of life.

Peter heard of a researcher at the Cleveland Clinic who was doing research on ALS, and he visited the doctor to talk to him. He decided that when his death was near, he wanted to die at the clinic so that researchers would have access to his body right away. Most of all, Kitty said, he wanted to aid doctors who are trying to understand the disease, so that others might not have to endure it.

Several weeks ago, when he believed he would die soon, Peter began thinking about making the trip to Cleveland Clinic. On Tuesday, Dec. 6, Peter decided that he was becoming very weak, and if he was going to go to the clinic, he should do it that day. A group of close friends and family members, including Peter’s wife, mother, sister and children, loaded up, and the group left Yellow Springs for Cleveland.

The hardest part for Peter, according to Dawn, who accompanied him on the trip, was leaving the Vale, where he not only lived, but had grown up.

“There were tears,” Dawn said, as Peter drove through the Vale for the last time.

But Peter seemed resolute, and the rest of the trip was easier, she said. The time for Peter’s breathing machine to be turned off, with his permission, was planned for Wednesday morning, and Peter stayed awake Tuesday night. He asked Dawn and Raven, his sister, to sing to him, Dawn said, and mostly he wanted silly songs.

When the time came Wednesday morning, he was ready, Dawn said. When Peter’s breathing machine was turned off, he looked each person there in the eye, she said, and had a smile on his face.

‘I have never seen such a look of sublime acceptance,” Dawn said.

Peter died about a half hour later.

Peter’s death was in keeping with his life, Porter said. In a situation where many would feel frightened and powerless, Peter chose to take control, and to face his death as he had faced his illness, on his own terms and in a way that might ease the lives of others.

“There was so much he couldn’t do, and this was something he could do,” she said. “It was his gift.”

Contact: dchiddister@ysnews.com