In this issue of Neurology Now, we learn about two brothers with Duchenne muscular dystrophy—a fatal neurologic disease—who can teach us all about embracing life. These energetic young men treat each day as a gift. In our cover story, celebrated artist Chuck Close tells us that his success is due to his many chronic neurologic problems, not in spite of them. And in “The Science of Survival,” we see how Jana Kosiba's decision to stay optimistic in the face of a malignant brain tumor has helped her participate actively in her treatment.
What all four people have in common is the acceptance of the reality of their lives and the will to live each day to the fullest. In fact, acceptance—even of loss and pain—is an important step in living fully.
During the course of my career as a neurologist, I have participated in the care of many people diagnosed with incurable diseases. For some, the diagnosis meant a normal life span lived with disability or pain. For others, it meant a life span measured in weeks or months. As you might imagine, people react to and cope with this news in many different ways, none of which is right or wrong.
In 1969, Elisabeth Kübler-Ross, M.D., first introduced the concept of stages of grief, in a book called On Death and Dying. She developed a model of how people cope with dying, based on her research with 500 dying patients. The first phase for most is denial: “This can't be happening to me!” The second is anger: “How can this be happening to me?” The third is bargaining: “I'll do anything for a few more years.” The fourth is depression: “I'm going to die, so what's the point?”
The fifth phase is acceptance: “Whatever happens, it's going to be okay.” Donald Patrick, Ph.D., and his fellow researchers have found that the ability to reach acceptance is influenced by the quality, meaning, and value the dying person places on her life. A person who finds value and meaning in life can make peace with the fact of death, even when it is fast approaching.
I had the opportunity to hear Dr. Kübler-Ross speak about her research when I was a medical student. She was quick to stress that while most people go through five stages, not all go through all of them or in the same order. Some phases are skipped completely, some people bounce back and forth between two stages, and sometimes people get stuck in one stage.
She also noted that this coping pattern is used by people suffering any type of major loss. For example, caregivers for people who are dying go through their own grief process, which can make it difficult to provide support. For those of us who find ourselves in this situation, the key is to take time to think about where we are—and where our loved one is—in the grief process and get help when we need it. Friends, our physicians, counselors, and support groups are all among the resources available to help.
The only certainty in life is that it will end for all of us, eventually. It's a painful thought, but acknowledging it has helped me focus on what is really important and what I want to accomplish in my life. I encourage all of you to do the same.
How have you coped with a painful reality, such as an illness—your own or that of a loved one? Has acceptance made a difference? E-mail us at email@example.com.
Take good care,
Robin L. Brey, M.D.