Book looks at family challenges
Spinal cord injury (SCI) affects an estimated 12,000 people each year, according to the National Spinal Cord Injury Statistical Center. But the challenges of returning to a healthy, productive life can significantly impact the family unit, as well. Dr. Michelle J. Alpert and Saul Wisnia explore those issues in a new book titled, “Spinal Cord Injury and the Family: A New Guide.”
“People [who are paralyzed] worry about the losses, and are often not capable of understanding that life can go on and be fulfilling,” Alpert said. “It is such a devastating, catastrophic event. But once you can learn to manage the changes in the body, you can live a life.”
Alpert is director of Rehabilitation Medicine at Hebrew Rehabilitation Center in Boston and a clinical instructor at Harvard Medical School. She also founded and directed the Spinal Cord Injury Program at Spaulding Rehabilitation Center. Her husband, Saul Wisnia, is senior publications editor for the Dana Farber Cancer Institute.
The duo coauthored “Spinal Cord Injury and the Family” to provide a comprehensive resource for individuals and families struggling to cope with SCI. The book tackles a variety of issues – from overcoming social anxieties, to questions of intimacy and parenting, to employment possibilities – and takes a unique approach to dealing with the psychological trauma of SCI from a family-based perspective.
“A lot of the book came from my personal experiences taking care of [SCI] patients over the course of my career, and from medical studies,” said Alpert. “But we supplemented that knowledge with interviews with people living with paralysis.”
Wisnia, a former sports writer, conducted many of the field interviews. He said he relished the opportunity to share the stories of SCI survivors who, despite their injuries, live remarkably active and normal lives.
“The book seemed like a great way to work on an exciting project and to learn more about what these people go through to get back to living their lives,” said Wisnia.
For Ted and Cindy Purcell, the authors of the book’s forward, that process of recovery began early in life.
“When I was first injured, I thought my life was over and that I would never have the things that most people have,” Cindy Purcell said. “I can honestly say, years later, that I have it all. I’ve been working full time for 21 years, I own a home, I drive, I’m married and I have a child.”
Cindy, now 50, was paralyzed in a car accident when she was 18. Her husband of 21 years is also bound to a wheelchair, the result of a skiing accident when he was just 14. But the couple has refused to let their injuries get in the way of achieving their family goals. Cindy is a vocational rehabilitation counselor and lectures extensively about SCI. Ted teaches science and technology to sixth and seventh graders. And Tanner, the couple’s 10-year-old son, keeps both of them busy with all the goings-on of a typical pre-teen boy.
“Hi is a very aware child, and we talk very openly with him about [our injuries],” Tanner’s mom said.
Ted admitted, however, that raising a child from the confines of a wheelchair does present challenges. Tanner has additional responsibilities around the house because of his parents’ limited mobility. And family vacations and outings often require extra planning and modified activities. But for the most part, the Purcells are a typical American family. And they hope that their story and the testimonies and information featured in “Spinal Cord Injury and the Family” can help families that are facing the prospect of living with SCI.
“You have to rely not only on doctors and the medical community, but on the practical experience of others,” Ted said. “This book can shorten the learning curve.”
By Lorne Bell