Parkinson’s disease sucks 4/19/2019

Last evening I took Cheryl to Holy Thursday services. I was sceptical about her ability to do okay during the service. Evenings are often not the best. But she was fine. Not very wiggly and no chest tightness.

This song: Let me be your servant touched me deeply.

Will you let me be your servant
Let me be as Christ to you
Pray that I might have the grace
To let you be my servant too

We are pilgrims on the journey
We are travellers on the road
We are here to help each other
Walk the mile and bear the load

I will hold the Christ light for you
In the night time of your fear
I will hold my hand out to you
Speak the the peace you long to hear.

I will weep when you are weeping
When you laugh, I’ll laugh with you
I will share your joy and sorrow
Till we’ve seen this journey through

Will you let me be your servant
Let me be as Christ to you
Pray that I might have the grace
To let you be my servant too

During the whole time it was being sung I was sitting in the chair in the hospital room at 3AM holding her hand so she could sleep.

When she regresses into delusional behavior and child-like activity it makes me sad. I sat with her that night pondering what was love, what is God, is there a God, is our situation unique, what is our purpose in life, what is the purpose of this activity as I sat in the darkness watching Cheryl sleep.

I don’t have the same feeling of church, God and religion that’s pounded into children’s heads as part of the Catholic Church and Catholic school education.

I’m going to be 70 this year. I’m still sorting through a lot of emotion and feeling left out of the confidence I see in others religiosity. Or, at least, I think I see. Mine is a constant questioning. I feel no comfort in going to church. I generally feel out-of-place in church. I understand that others get something that I do not.

But the words to this song touched me.

Parkinson’s Disease sucks April 6, 2019

Cheryl

This person is the love of my life. My companion, my confidant, my support, my cheerleader, my lover, the mother of our children, the person who fills me up, the person where I am home.

Parkinson’s disease has stolen the soul of her being and it sucks. This is an old picture. We made a trip with friends to Grand Canyon National Park and Arizona. She saw the Milky Way one warm clear evening in the desert. We walked, talked, enjoyed some ice cream. It was a great trip. We thought one of many to be had in our later years as we grew older. We intended to savor life, enjoy the activities and antics of grand children and slowly fade away to the grand march of time.

I long to see this smile. This is one of the few pictures I have with Cheryl smiling naturally, not posed, not requested. Occasionally I would get lucky with my camera. Parkinson’s has stolen her smile and it sucks.