Glorifying God in life and death

"… it’s like being told that our life is not worth living.”

By Marg Buchanan and ChristianWeek | February 23, 2015

If you ask Deborah Kennard what she thinks about the right to die debate, you might just gain some interesting insight into the right to live. Having made the choice in extremis more than once, Kennard backs up her reflections with a lifetime of personal experience.

Deborah Kennard was born in 1954 with Spinal Muscular Atrophy, a degenerative condition that leads to the weakening of the muscles, and early death. Doctors told her parents she would not survive beyond three-years-old.

Today, at age 60, she can only move her mouth, her eyebrows and her thumbs. She uses her left thumb to control her horizontal motorized chair.

Although she spent her childhood in and out of hospital for dehydration, pneumonia and “multiple crises,” her first real brush with death came at “20 years and 40 pounds,” when she experienced respiratory failure. “Every molecule in my body was struggling to breathe,” she says. “I was so exhausted I would ask people to throw me off the bed because I just couldn’t do it anymore. “

After five days of struggle, she ultimately lost consciousness. The medical team was able to revive her just enough to ask her what she wanted. “We can help you but you might spend your life on a respirator,” they said. “Or … we could do nothing.” Kennard learned several years later that she responded, “Do something or I’m going to die.”

She spent eight years in the hospital, totally dependent on her machines and full-time care. To leave the hospital would require being weaned from the respirator, which she admits was a scary prospect at the time.

It would take another near-death experience to convince her she was ready. Kennard woke up one morning unable to breathe, with the sensation she was drowning. Nobody came when she buzzed, and she felt herself slipping. “I looked up at the ceiling, and said ‘Lord, only you can do something for me now’ and passed out.”

“It was like I was an infant in my father’s arms,” she recalls. “Nothing at all could hurt me. Instead of drowning, I was surrounded by infinite love. It was where I belonged and what I had waited for.” When she eventually felt oxygen being pumped into her, she says she did not want to come back.

Kennard says the experience showed her that she could trust God, and she was ready to get on with her life. Shortly after the incident, she moved to a rehabilitation centre where she met some Christian friends. They invited her to join them on a trip to Los Angeles to attend workshops with well-known Christian quadriplegic and disability advocate Joni Eareckson Tada.

While in Los Angeles, she met other people with severe disabilities who were benefiting from independent living programs, and began to dream of having a place of her own one day. Back in Montreal, she moved into a pavilion for people who were learning to live autonomously.

“My commitment to the independent living movement is derived from what I understand of the early church. People brought whatever they could to the community,” Kennard says. “Some brought a lot. Some brought little. But everything was worthy. And everybody is worthy.”

Today, she is president and chair of the board of Independent Living Montreal, as well as sitting on two other boards. She can work from her assisted-living apartment, where she has all of the technology she needs at the tip of her mouthstick.

Although Kennard has repeatedly chosen life, she says she understands people who are ready to go. “I just hope that people who want to live will be supported. We have the ways and means to provide quality of life. Society should make sure that all those options are available.”

She also has some strong words regarding the current right to die debate. “The movement of assisted suicide and euthanasia threatens people like me. And the media use jargon to describe people with disabilities that is very derogatory… it’s like being told that our life is not worth living.”

For now, Kennard is on a personal campaign for her own quality of life. In the spring of 2014, over-exertion and under-nourishment got the best of her, and she was hospitalized again. Now a bureaucratic glitch has her stuck in hospital but she longs to return home and get back to work, to use her time to help others.

“And then,” she says, “I do hope that when it is time to go, it will be in a way that will glorify God.”