From the
Dedication
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…
Chapter 1 - Issues of Today
Chapter 2 - Marriage
Chapter 3 - Our Children
Chapter 4 - Our Emotions
Chapter 5 - Coping With Loss
Chapter 6 - The Evolving Human Spirit
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.
None available at this time.
Email your review to reviews@disabilitiesbooks.com
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. .
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