Regular readers know that I do a lot of work regarding end-of-life decision-making. I once discovered an advance directive written by a man who went to great lengths to define the things he believed made him “a person”:
- The ability to understand what is happening around me.
- Awareness of the consequences of medical decisions related to my condition.
- Knowing who I love and care about, and being able to recognize and communicate with them.
He said that if ever he were no longer a person, based on this definition, he didn’t want his life prolonged. He also made a special request of his loved ones: “If ever anyone is in my presence discussing me or my condition, I want them to talk as if I were present.”
Reading that made me realize how often we inadvertently ignore someone’s presence. Nurse’s aides may be so focused on emptying waste or washing floors that they seem unaware of the person in the bed. Doctors sometimes consult with their associates about one’s condition and treatment while seemingly forgetting the patient can hear them. Family members will talk in the third person about something funny that Dad did when they were younger—although Dad is right there, even if he seems asleep or oblivious.
I once suffered from temporary aphasia after coming out of a surgical anesthetic—I was able to think clearly, but unable to speak or be understood. I was terrified. I was reminded of that scare at a recent recitation by the writers in the “You Don’t Have to Be Hemingway” group in Palm Desert.
One writer’s piece in particular really touched me. Patty Stevens (upper right) is a dynamic personality who is about to turn 80. She’s been in the desert 11 years from Indiana, and is the mother of six, with 14 grandchildren and six great-grandchildren.
“I’m not a writer,” she says. “I just thought this was a good time for me to try, and all of a sudden, these stories started coming out. Now, I just love it.”
Stevens ran a day-care center for 38 years and entertained the children with song and dance, “but I couldn’t read in front of other people. Now I can’t wait to read out loud what I’ve written.”
Her contribution was in response to the suggestion to write from the perspective of something inanimate. She decided to take a broader view of what “inanimate” means, and created “Old Man Silenced by Stroke”:
When I was a little boy in grade school, my teacher told us to stop talking so much. … Miss Jackson told us about an old man sitting on a park bench all alone, not talking because he had used up all his words when he was young. That scared me. So I was careful to only talk when I felt I had something important to say.
I had a good life—great education—wonderful wife and three children. And to my surprise one day, I had a stroke. It was a bad stroke with no warning. I ate right. I exercised. I loved my life. And I had a very bad stroke.
Now here I am in a hospital bed with no movement of my body.
I can see and hear. But no one knows I’m here inside this wasted body.
Nurses change me, feed me, clean me, talk nice to me. I have a lot of words inside me, and I can’t speak. I saved all my words for a long life. What am I going to do with them now?
My wife came to visit and talked and talked and talked. I wanted her to STOP. I heard all about her activities. The children visited to tell me what vacations they were taking and were planning. I want to go. I want to tell them the plans I have.
My nurse will bring flowers and read cards to me. They don’t show them to me. They just read who they are from and put them on the door for others to see. Visitors laugh and tell jokes about world affairs. I want to read a paper. Please turn on the TV for me to hear and see news. …
I wish there was a plug I could pull. If God takes this much of a body and leaves these senses, it’s not fair. This is too painful.
I can still pray for others. That’s what I’ll do. I’ll do it the rest of my life. Pray for the world, for peace. And pray for others, especially those who come to visit. They need to appreciate their life more. And be considerate of others’ ears when they talk. Smile more.
I still have my life. I’m just a little short of some things, but I will give it my all till I die.
The idea of being unable to communicate may be the condition people dread most. I still remember the fear I felt. However, Patty Stevens’ “Old Man Silenced by Stroke,” albeit fictional, communicates the fact that there is still somebody in there.
Maybe my concept of personhood needs some adjusting. I think of that aforementioned man’s attempt to define what it means to be a person, and how easily I agreed with his need to be able to communicate. I think of those who find a way, through sheer will, to connect through eye blinks or artificial intelligence or because a devoted spouse can read their thoughts.
If I were trapped inside my own mind, unable to communicate in any way, I would no longer define myself as a person, although I might still be alive. What defines it for you?
Anita Rufus is also known as “The Lovable Liberal,” and her radio show airs Sundays from 11 a.m. to 1 p.m. on KNews Radio 94.3 FM. Email her at Anita@LovableLiberal.com. Know Your Neighbors appears every other Wednesday.