The day began really early today… Much earlier than I would like. The coffee didn’t have a chance to even make it to my gut before we were on our way. We were going to see a patient… younger who had been diagnosed with ALS. As typical for me, I was full of nervous anticipation. It’s a good thing that the nurse I was with was a morning chatterbox because her ongoing conversation kept my mind from wandering. It was a long ride to get to the patient’s house, but we had to get there before her partner left for work because he wanted to be there with her.
Her smile caught me from the moment I entered her house. She has lost use of her fingers… able to just have very gross movements of her arms and legs. Her thumb was the only finger she could really use and that was used to give a thumbs up when she agreed with something. To try and quantify the vortex of emotions that engulfed me would be futile. I’m not even sure such words exist in any language.
My heart broke for her as she tried to communicate, sometimes without much success. As the disease was ravaging her body, she was losing the ability to control any of her own shell. A far cry from being heavy, it took 3 people to help move her. I kept putting myself in her shoes. How would I feel if words no longer were able to exit my mouth? Would I want to be around if I could not reach for my own glass of water? I am sure that she has her moments of faltering when no one is around, but, at that moment she was brave and full of joy.
That smile… her laugh that sounded like it was rattling her soul. We teased her about causing trouble and doing the shimmy shake to avoid pressure sores and she would close her eyes and laugh. It’s hard to fathom that 3 months ago, she was just like me. She could walk and talk. The decline was so rapid that not her nor her partner have had any time to process it all. Would anyone be there for me if I couldn’t wipe my nose or have another spoonful of food? Yet, like her knight in shining armor, he saved his maiden from the toils of her condition. He has to feel helpless because he can do nothing to stop the deterioration of his love, but, aside from leaving for work, he was ever present.
Are we really more than just our bodies? With so much emphasis on our physical appearance, can our souls be just as important? This sweet woman gave me the gift of understanding that it is so. Her mental capacities are totally intact. She is staring down the tunnel of the unknown and doing so with that smile. It’s my job to get her to that end of the tunnel with empathy, compassion and dignity. That’s the least I could do to thank her for that smile…..