“Watch yourself, he tries to swing his arms sometimes to try to hit you” I was told as I entered the room of a patient described as “violent”.
I was a new nurse, and hadn’t read his chart. I was told that he was “gorked out”, that a stroke had caused brain damage and that he was like an animal now, unable to move or speak.
He had a decubitus ulcer the size of my fist that I had to unpack and redress. I got to work quickly with the nurse’s aid that was helping me talking the whole time about the party she had been to the night before. When the work was complete, I covered him with the sheets and left the room quickly.
The following day I entered his room alone, skittishly. The television was on featuring a clip of then President Reagan, who I did not care for. I muttered something under my breath about the state of the country. I looked up and saw the patient look to the television, then at me.
In an instant I suspected a horrible truth: this man was not brain damaged; he was locked in.
I moved slowly toward the bed to test my assumptions and said “So you’re not a fan of our presidential cowboy either?” His face softened and his eyes twinkled. He followed me around the room visually as I talked to him about politics and national affairs, while gathering my supplies.
His eyes told me that he was grateful for the fact that I “saw” him.
That day his wife came to visit. She spoke to him as if he had no deficits whatsoever. I asked her to tell me about him and with great pride she talked about what a wonderful husband and father he was. The most important part was that she did not talk about any of it in past tense.
The fact that he was no longer able to move even the tiniest finger made no difference to his gentle wife. Her love for him glowed, and I felt honored to see her interacting with him every day. It helped me get to know him.
I learned a great lesson with that patient; that all is not what it appears. I subsequently went on in my career to meet many, many people who had either had strokes, brain injuries, or were otherwise “locked in.”
One man who suffered aphasia, the inability to speak, after a stroke, became easily frustrated. His words were formed perfectly in his head, but when he spoke it was jibberish.
One night in the hospital after a lengthy time of trying to speak, his frustration led him to throw a folding chair at me. I was quick to jump out of the way as he dashed into his bathroom. I was sitting on the bed waiting for him when he came out. He looked very chagrined.
I reminded him that we are not what we do, and that he is valued for the person that he is, not for what he can communicate or do. I acknowledged how very difficult it must have been not to be able to make the simplest needs known. I asked him if he had children and grandchildren, and he nodded yes with his soft, tender eyes.
“Do you know that your children and grandchildren love you just for being present in their lives?” I asked.
I reminded him that often we find our self worth in our jobs or in our abilities, but when all of it is stripped away, our very presence is what is so needed to the ones we love.
It’s important to realize in these times of great unemployment, that we are not what we do. When you have a job, or a healthy body that you have great pride in, you can imagine that this is why you are loved or appreciated.
The truth is much different.
In his autobiography entitled “The Diving Bell and The Butterfly” Jean-Dominique Bauby, the former editor-in-chief for Elle Magazine in Paris, discussed what it feels like to live in a state of being “locked in”. At 44 years old he suffered a catastrophic stroke that left him unable to move or speak. He eventually discovered that he could move his left eyelid and with the aid of an assistant and a special alphabet board, dictated his extraordinary memoir. Mr. Bauby had to find a way to view himself differently, and his book takes us with him on his journey, as he experiences the closing of one part of his life, and the opening of another.
As more people become unemployed or even face retirement, perhaps we can remind ourselves about what matters and what is valued. It isn’t what we do, it’s who we are at the core, and it’s our ability to love, even if only with a twinkle of the eye, that gives us our true value.
How important it is to accept that though one door has closed, we can still open another.
