"On Healing" April 2003

Posted on Mon, Apr. 21, 2003
Death of a loved one is never easy to get through
By Dan Gottlieb

I am 17 years old and lately my biggest problem is dealing with death. Family members and friends' family members are passing away frequently lately. It makes me think about death, and what it is, and the whole thought bothers me. Could you maybe write an article on how to deal with this rough topic?

The death of a loved one is the greatest pain we can experience in life.

This pain can affect our emotions, our bodies and our minds. In the early days following a death, the pain is with us constantly. In the days that follow, every now and then we might notice that we have experienced some brief period of time when we were not thinking of our loved one. And in that moment, the pain returns.

On an emotional level, grief causes sorrow, anguish or anger. Often, grief makes us feel very alone. A friend who recently experienced a death said: "I can't believe the whole world is still going about their business as though nothing happened while my world just stopped."

Physically, we can experience grief through exhaustion, sleeplessness or lack of appetite. The loss of someone we love turns our lives upside down. It is important to understand that the pain and confusion you might feel are not problems to be solved; they are a normal reaction to death.

I contacted Corinne Mazur, a psychologist who specializes in childhood bereavement. She said that when it comes to dealing with death, our nation's young people are both overexposed and underprepared. She explained that between the news and video games, today's children are almost constantly assaulted by images of death.

Mazur was most concerned that the media portray death in a way that is depersonalized: "This makes it hard for people to have personal reactions to death because they become numb to their feelings. If this did not happen, and people felt the pain of each death they witnessed, they would quickly become overwhelmed. This process of desensitizing death makes death appear less painful then it actually is. So the media do not give us any help dealing with the very real pain that occurs when a loved one dies."

Remember, though death may end a life, it does not end a relationship. It may take months, even years, to say goodbye to that person, that part of your life, and that part of yourself. And the goodbye is never permanent. Anyone who has ever lost a loved one will tell you that both the pain and love revisit. You may feel these emotions on the holidays, or if you see someone who reminds you of a loved one; sometimes a piece of music or a book will stir the feelings. But as long as you live, parts of that person will live in your heart.

The amazing thing about us is how we recover. I have watched hundreds of people recover from the loss of a loved one. Although they all react differently - some feel anguish, some feel anger or guilt, and some just feel grief - but they all heal the same way.

Somehow the emotions get smaller, and one day they notice they did not think about their loved one constantly. Eventually the searing pain diminishes and we are left with an ache - a longing that often lasts a lifetime.

For some people, grief turns into depression. It could be because of a complicated relationship with the person who died, or it could be because there was a depression beneath the surface. For these people, dealing with the pain is usually helped by psychotherapy and/or medication.

Many people find comfort in spirituality and believe in an afterlife. They feel reassured that their loved ones have found peace. Our task is not to make that pain go away, but to find a way to live in a world that is no longer inhabited by the person who has recently died.

I have lived through many deaths - both personally and professionally. And what I have learned over time is that I don't deal with death, it deals with me. Inevitably when someone I love dies, I feel searing pain and very alone. I feel an indescribable longing as though a piece of me is gone. And then, over time, the searing pain turns into sadness and the sadness turns into an ache that I carry inside. Sometimes the ache feels bad and sometimes it feels good.

The other night, I had dinner by myself and after dinner I found some cookies in the kitchen. I sat at the counter and ate far more cookies than I should have. While I was doing so, I reflected back to the image of my late father doing the very same thing. When I realized this, first I looked skyward and smiled. Then I cried. And then I moved on.

Posted on Mon, Apr. 07, 2003
The threat of fear, and the balm of the caring doctor
By Dan Gottlieb

I was supposed to be living out a boyhood dream attending the Phillies' spring training in Clearwater, Fla. I was supposed to be soaking up rays and watching new players.

Instead, I was looking at a doctor who was looking at me sternly and saying: "I want you in the hospital now. What you have could be fatal."

It started a week earlier with a tickle in my throat. I've had this before, and inevitably it develops into a chest cold. Chest colds can be quite dangerous for those of us with quadriplegia, as many of our trunk muscles are paralyzed and we aren't able to cough sufficiently. Usually, after a few days of treatment and antibiotics, I respond well. This was different.

After several days of fever, the congestion got worse, and I began to have trouble breathing. For anatomical reasons, sitting up in the wheelchair makes coughing a bit easier. And lying down in bed is awful. The congestion gets worse and coughing is impossible.

So when the doctor said I needed to be in the hospital, the thought of being confined to a bed with congested lungs unable to cough was terrifying. When I explained my fear to the doctor, he agreed to let me try to return home for 48 hours before going into the hospital, but suggested I sleep in my wheelchair.

When I left, I thanked the doctor for his time and concern, though I felt anything but thankful. All I could feel was fear. I was frightened about spending two nights in a wheelchair, and frightened about my congestion. Most of all, I was scared of losing my life gasping for air.

Ever since my accident 23 years ago, I've assumed I would die prematurely. I believed that one of my frequent urinary tract infections would turn septic and become fatal, or a chest cold would turn into pneumonia, or, because I have no sensation, a malignancy would develop out of control because I could not feel it. I always believed that one day, something regular would turn sour. And that night, as I became more ill every hour, everything seemed to be pointing in that direction.

The next morning I sought another opinion. This doctor looked in my eyes and smiled. She asked about my concerns. She did a comprehensive exam and explained the results and my options. As she spoke, she looked directly in my eyes and touched me. We tried a nebulizer treatment and discovered it improved my breathing slightly. She seemed truly happy with the results and was confident I wouldn't need hospitalization.

As I left her office, my lungs were still pretty congested, but I could certainly breathe easier.

I contacted Dr. Herbert Adler, a clinical professor of psychiatry at Jefferson Hospital who has done research on the nature of doctor-patient relationships. He suggested that when I became so frightened after the first doctor visit, the fear itself contributed to my deteriorating condition.

It is well documented that stress and fear can harm the healing process. New research reveals that exposure to a caring relationship also helps people change physiologically. Stress hormones diminish and endorphins and serotonin increase when people experience compassion.

So what constitutes a caring relationship? After all, it was clear that the first doctor cared about my condition every bit as much as the second doctor.

When I asked Adler how we experience caring, he replied: "One of the most reliable ways we register it is through our senses (such as body movement, facial expressions, tone in one's voice). By definition, it is outside of conscious awareness." He went on to explain that empathy is "feeling felt."

With the first doctor, he was concerned about my condition and went out of his way to see me with very little notice, and I could see the look of concern on his face. But using Adler's definition, I did not experience empathy - I did not feel felt.

What I want of my doctors - in the moment before they put a hand on the door - is for them to just wonder what it is like to be sitting in that examining room as a 56-year-old man with quadriplegia and lung congestion. I asked Adler if this is reasonable to ask of a doctor, many of whom are required to see a new patient every 15 minutes.

There was a long, thoughtful pause during which he was clearly frustrated. "We all know that empathy is essential in a healing relationship," he said. "But the way medicine is practiced today, empathy is very difficult. First of all, when a doctor is in the room with a patient, psychologically they are also in the room with a potential malpractice attorney and a managed-care provider. They worry about whether any given decision could result in a lawsuit, and they worry about whether they will have to justify this treatment to an unsympathetic managed-care provider. This drains the relationship and more than anything else interferes with empathy."

Adler said empathy also depends on a doctor's personality, experience with a previous patient, or feelings about a future one. A doctor will be more empathic on a good day than on a bad day.

Fair enough; doctors are only human. It's unfair to ask superhuman compassion of them.

Nevertheless, I want my doctors to know they are working with a person and not an organ system. I want them to just understand that the person they are working with may have anxiety and a sense of helplessness, that their patient has a life he or she is anxious to return to and a family that is worried.

Despite the fact that I canceled my follow-up appointment 48 hours after my visit, my first doctor called to find out how I was. I told him I sought another opinion and felt I had turned the corner. He sounded relieved that I followed up and genuinely happy that I was feeling better. Before we said goodbye, I told him I was grateful for the call.

When I left his office two days earlier, I had felt I was in the hands of a terrific pulmonologist. After the call, I felt I was in the hands of a good doctor.

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