The other day, I was trying to make a referral and couldn’t remember how to spell my neurologist’s first name. I asked Selch. It’s not at all a common name. He did a quick search on what he thought her name was just to check. He found a page on the internet that matched the name, but didn’t look quite right. He started to read. The woman was a doctor and a PhD, but was recently retired from the Texas A&M College of Medicine as a professor of surgery, not a neurologist. She was writing about two epiphanies that she had experienced in her life. I noticed he got a little misty as he read.
Her first epiphany came in response to a prayer. She was called to be an ordinary Christian woman. A bhakta. [Note: In ancient India, the followers of Vishu marked their foreheads with three vertical lines, and the followers of Shiva, with three horizontal lines. The term bhakta means "one marked by striations", and came to be used as a collective term for those who devote their lives to God, of whatever persuasion, whichever direction the lines are drawn.]
Her second epiphany struck closer to home. Her mother became ill, and the illness damaged her brain severely. It left her “locked in” with no means of communication.
Her cerebellum–the center of coordination–had been destroyed. When this happens, there is no way to speak, no way to signal. Try to signal and your hands fly wildly like startled birds. Try to speak and a scream comes out.
Part of the second epiphany concerned her mother. God told her, “…I need someone with the resourcefulness to reach this woman trapped in a body that doesn’t respond.” Many would have said that her mother was gone, and put her into a home. That way, she wouldn’t have to agonize about the effects on her two young boys and her toddler, Beth. It would certainly be the easy way out. Beth would stand for hours by the wheelchair, looking at her grandmother.
Instead, she persevered and worked with her mother, eventually finding a way that her mother could respond in ways that meant Yes or No. Her mother was still there. They found ways to communicate. Her mother was not gone. Selch puts it in computer terms: The problem was with the interface.
I can relate to little Beth because I was also called Beth when I was growing up. I remember also standing by my grandmother’s chair. She had severe Obsessive Compulsive Disorder, but we were very close. My doctor and I talked about how we had both been called Beth growing up.
Then it all became clear to me. The little Beth in the story is my neurologist.
This story is important to all of us who are patients and caregivers. We wonder sometimes, “Is my loved one still there? Should I keep trying? Maybe it is time to give up.” I read many messages from caregivers who wonder if their loved one is still there, should they keep trying to communicate. I always say, Yes.
Some people, frequently doctors or scientists, will try to “objectively” define a person as a collection of behaviors. If the behaviors change drastically, they say the person is no longer there, that this is a different person, as they no longer act in the same way they used to. They will frequently tell the family, “Do what you think is best for the remaining members of your family. The person you loved is no longer there.” What would have happened to little Beth’s grandmother, if her mother had taken this view?
I am more than a collection of behaviors. Christians believe that there is an immortal soul, and that this physical body is only temporary. Buddhists and Hindus also believe that this body is temporary, that we are not simply the body, but will be reborn or reincarnated. There is a problem with my body, my brain has a disease that will cause my body to die. It is not a problem with me. It is a problem with my interface to this world.
When my disease progresses far enough, I will no longer be able to communicate in words. Selch will find new ways. He knows I will still be there, loving and caring and suffering, on the other side of a broken and deteriorating interface.