Dear Sam:
You frequently ask why I’m in a wheelchair. When I tell you my legs don’t work, you ask why.
Because you’re only 4, I have tried to give you explanations that can make sense to you. But here is the real answer: 25 years ago today, I kissed my wife and my two daughters (your mother) goodbye and walked across a newly frozen lawn to my car to go to work. Those were the last steps I ever took.
Two hours after that walk across the lawn, the wheel of a tractor-trailer hit my car. In that moment I became a quadriplegic. The last thing I remember was that big black thing in the sky coming toward me. That big black thing changed my life.
Since that day, I learned that almost everyone could point to a single event that permanently changed their lives. It could be a divorce, a diagnosis, or the sudden death of a loved one, but at those moments, lives are forever changed.
And inevitably when that happens, we all want the same thing; we want what we had yesterday. That’s often true even if we thought we were unhappy with our lives.
Most of us live with the thought that we have a road map. Even if we are unhappy, we have a sense of who we are and what our lives are about. We assume that life is relatively predictable and that tomorrow will be pretty much the same as today. But when trauma happens, we lose our road map.
When I had my accident, my greatest pain was that I couldn’t figure out who I was or where I belonged. I was now different from my friends, family and colleagues. And when I heard a doctor refer to me as a “quad,” I realized I now belonged to a group I didn’t want to be in. Sam, this sense of not belonging caused me terrible pain.
I recently interviewed a woman named Jackie for a radio show. She had been diagnosed with AIDS seven years ago. When we spoke, she said she had known that she had AIDS for over 20 years, but waited to be diagnosed. She said she knew because in the past, she had been an intravenous drug user and all of the people she shot up with had died of AIDS.
When I asked her why she waited so long to get diagnosed, she explained that, as an African American, she already felt disenfranchised, and, as a substance abuser, she felt even more isolated. She was afraid that if she also carried an AIDS diagnosis, she wouldn’t belong to any group anymore. She would have rather died than become completely disenfranchised.
Sam, when we experience a life-altering event that is not our choice, most people try to clutch on to the old road map and rail against the gods of fate that caused this change. I certainly did. For the first several years, I was frightened and insecure. Then I became severely depressed. I felt lost, hopeless and worthless.
And most of all, I felt utterly disconnected from the larger world. All I could see was who I was not and I was unable to see who I was becoming.
And then the telephone began to ring with patients asking me to help them. In the ensuing hours, days and months, I grew to understand that the help I gave my patients had nothing to do with my ability to walk; it was about my heart and mind. And in that work, I found my connection to the larger world.
Psychotherapy and medication helped with the depression, but I never would have rebuilt my life without those telephone calls.
There is an old Sufi saying: “When the heart weeps for what it’s lost, the soul rejoices for what it’s found.” On the other side of despair, we can discover life anew.
Shortly after her diagnosis, Jackie became an outreach specialist for “Philadelphia Fight,” a comprehensive AIDS service organization. She uses her own experience to support others when they first get diagnosed. For the first time in her life, she feels good about herself as a contributing member of society. At the end of our interview, she said: “Heroin almost took my life, but AIDS saved it.”
Sam, sometimes a road map, even a harmful one, can help us feel that life is predictable. It can give us a feeling of identity and security. But sometimes that same road map can prevent us from becoming who we truly are.
Love,
Pop
drdangottlieb1946@gmail.com