Incurable disease is a life sentence.
Let’s reemphasize that.
Incurable disease is a life sentence not a death sentence.

I thought that Parkinson’s disease hijacking Andy’s voice and rendering him a forever whisperer was as bad as that could get, until we were in speech therapy for the problem and a perfectly nice therapist set us straight.

It turned out that Andy was no longer able to swallow without a new danger- called aspiration. The therapist looked directly at Andy and said, “You will probably die from aspiration pneumonia.”

My hands gripped the arms of my black plastic chair more tightly. We had not asked her what Andy might die from and I felt like she had violated our trust by stating that casually. I wanted to say to her, “Yeah, well you will probably get hit by a bus this afternoon.”

I didn’t though.

I felt defensive because death is the end of Parkinson’s and I wasn’t prepared in my mind or heart to say good bye to Andy in that moment. I had to remind myself that Andy did not have aspiration pneumonia and no doctor or therapist could accurately predict anyone’s death. After the shock of our appointment, we began to be more attentive to seriously working with exercises to help Andy’s swallowing issues.

We laughed together one day when listing all the changes having Parkinson’s had brought into our lives. Andy said, “At least we never have a dull moment.”

Incurable disease is a life sentence.

Let’s reemphasize that.

Incurable disease is a life sentence not a death sentence.

Nowadays, I lead Andy in daily swallowing and breathing exercises in order to keep aspiration pneumonia away.

I create meals that are easier to swallow.

Andy chokes and coughs at pretty much every meal and I’ve come to love and bless those coughs and chokes because they are him fighting the aspiration that does happen.

Coughing and choking, in Andy’s case, is him living and is cause for celebration rather than worry.

The new wave treatments we’ve found for swallowing issues are to simultaneously turn our assumptions upside down and live every moment of this life sentence without dreading death. At meals I’ve learned to feel happy when Andy coughs or chokes. We’ve both set down that therapist’s words predicting Andy’s cause of death and made a conscious choice to stick together and live out our life mystery.

2 thoughts on “Swallowing

  1. I love this appreciation for a life sentence, Michelle. Your journeys have been riddled with uncertainty, struggles, pain and loss. But also, so much love, tenderness, empathy and strength. Sending love🥰

    1. Sandy and Andy, You two will always be in our hearts and one day we hope to meet again!!! Love you both1

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