Thirty years ago, I had a car accident that rendered me quadriplegic. As you can imagine, this one moment changed everything. One week later, as I lay in bed trying to fathom what happened, I heard the doctor in the hall saying: “did anyone take care of the Quad in 301”? At that moment, I realized that if I didn’t say something and keep saying something, the person that once was Dan would now be just “the quad”. At that moment I felt I was in great danger of losing myself.
You see, trauma, like life itself, creates a story that must be told. Life is lived through stories. It’s how we define ourselves and how we experience emotional intimacy. Telling your story to a fellow human is a way of establishing your uniqueness—your identity. And having been heard, and truly understood, helps you experience being part of the larger community—it helps you feel more human. If the story doesn’t get told-and heard- we are at risk of losing our identity and our sense of belonging.
As I lay in bed wrestling with Quadriplegia, people spoke to me differently and didn’t make eye contact with me. My sense of alienation was terrifying. So, with the help of Darrell Sifford, a local columnist, I began to tell my story. Slowly I realized that my patients were doing the same thing. Simply telling their story so that their lives could be more fully lived. The same was true about the people who called my radio show and wrote letters for my column, they were asking for advice but they were wishing for understanding.
The letters you will read are voices of conflict and distress. They are voices of confusion, sadness, pain and injustice. But most of all, they are people with stories to tell. After all, we all pretty much want the same thing. We want to feel understood, we want a modicum of happiness and we want to feel as though we belong. Since those early days in the hospital, I have devoted my life to listening to stories and telling my own.
I have many people to thank for their direct and in direct assistance in writing this book. I certainly thank all of the people in my life who have given me the opportunity to love them. That’s because the act of loving helps us feel more connected — more alive…
As you read this book, I invite you to he.
Hope Cuts Both Ways
I was watching the recent Super Bowl with several friends. Everybody was pretty relaxed, sitting either on the sofa or floor. Except me. I sat where I always sit – in my wheelchair. Like most, we were talking during the commercials when, help of the corner of my eye, I saw fellow quadriplegic Christopher Reeve. All conversation stopped as we watched him rise from his wheelchair, walk haltingly across the stage and accept an award. Conversation seemed to stop and, all of a sudden, I felt terribly conspicuous – and terribly crippled. I felt exposed, embarrassed and enraged. This was a commercial for John Nuveen & Co., an asset management firm that spent $4 million dollars to deliver the message that people could “change the way they think about wealth.”
Boy, if only people could change the way they think about one another, what to do with one’s wealth would be less of a problem.
Hope cuts both ways.
It’s been 20 years since the automobile accident that left me paralyzed, and in that time, as a family therapist, I have treated over 100 people with spinal cord injuries. Depending on their emotional and social resources, most do quite well. Many get quite depressed for a period of time but most recover. Of course, their lives change. Many marriages don’t survive and some people are forced to change careers. But for better or worse, life goes on for most. But not everyone. I have treated many people who were more crippled by hope than by the spinal cord injury. These people don’t reclaim their lives. They stay home and wait for the cure. I have watched as they sacrificed their time, their family and, for all intents and purposes their lives reading for tomorrow’s cure.
Hope cuts both ways.
Several months ago, when I interviewed Reeve for my radio show on WHYY, he referred to himself as: “temporarily quadriplegic.” When I told him that I had very mixed feelings about the idea of cure, I explained that I had spent 20 years living my life in a chair and that I was pretty happy. He said that my position was understandable because of the life I had made for myself. I attribute part of the quality of my life to hopelessness! I was told there was no hope for a cure, and I believed them. So after a period of severe Depression, I began looking for a way to find happiness in a wheelchair. I never had hope that I could walk, but I always had hope that I would be happy.
Don’t get me wrong, Hope is also necessary for life. Poverty without hope is lethal. Hope is a critical element with cancer and many other diseases. But even with cancer, hope cuts both ways. When diagnosed with serious illness, hope gives us energy to fight the necessary battles and helps give us a vision for a future without illness. Hope can stave off an incipient depression. But I have also treated many who were terminally ill and watched as hope turned into Denial and robbed than of quality in their final days. How sad it is when someone is near death and their loved one says, “Don’t give of hope,” instead of saying, “I love you dearly and will miss you forever.”
So why was I angry? Many in our society become objectified. Not just those of us with physical or mental handicaps, but often racial and ethnic minorities, women, children and senior citizens are seen as “things,” as faceless members of some group. When that happens, we become a little less human. Life-sustaining compassion stops, and we are told who we are by others.
The Nuveen commercial tried to tell the world what we wanted and how we would look if we got it. Well, if the people who made it were to come to me, I would tell them what I really want. I would want them to look at me as a man and not a thing. I would want them to make eye contact with me and learn about my humanity – things I love and fear. The daily suffering of quadriplegia and the daily joys of being alive – even in a wheelchair! I would ask for their caring instead of spending $4 million dollars to manipulate people to invest with their company.
Later, I read that some people with spinal-cord injuries thought at first that Reeve must have been cured. But they weren’t the only ones who felt harmed.
Personally, hope scares me to death.
I built my life, I like my life, and I see talk of a cure on the horizon as this expectation that my life could change radically again. I wouldn’t say no, but I sure wouldn’t be the first one in line. I’d get there when I get a break in my schedule.
The gift of a cure involves diminishing some suffering. The price of a cure is a radical change in this life that I love. I’m no different from you. My pscyhe is the same as yours. You suffer with a whole variety of things, and you incorporate them into your life. How about if a give you a million dollars, and I can tell you as a result of that, you might not be seen as your community, your friends, and even your loved ones the same way as you were yesterday? Wouldn’t you think twice?
I (also) feel people would be less compassionate toward me. I get to see the best of the humanity in how people behave toward me. I see these kids at the mall, looking tough and acting threatening, but when they see me, they stop and say hello. I fear I might lose some of the many, many things I’ve gained as a result of my spinal cord injury – the wisdom, the ability to sit still and observe, my own ability to slow down and feel compassion.
When I first saw the commercial, I felt some ashamed and vulnerable. If the people responsible for the commercial felt those emotions, I would have more hope. But I don’t.
Meet The Author
Psychologist and family therapist Daniel H. Gottlieb, Ph.D., hosts the widely acclaimed public radio show “Voices in the Family.” For 8 years he has authored a bimonthly column in the Philadelphia Inquirer “On Healing”. He responds to readers with advice from science, philosophy, poetry and his experience as a grandfather, father, son, brother and quadriplegic. .