We have been together for a long time. Married for 50 years next year. Together as a couple 53 years this year. A long time. I guess we are comfortable with each other. I will call it love since I have no better way to denote it.

When we where younger, we could sit quietly together. No longer is this true. Parkinson’s has attached new wiring and Cheryl’s thoughts come directly to her lips. She now talks constantly. To things, about things, to insects and sometimes to me.

These are noticeable changes in behavior.

There is a deep emotional connection to these changes in behavior. They are a window to a view of the future. It feels like grief. It sucks.

Our middle child once became very angry with me about something. I no longer recall the context of the outburst. But his thought was this, “I want to do more than just hold the board!”.

It may mean little to you as you read this. But to us, he and me, it spoke volumes. When David was very little, I was in my prime wood working years. I gave him a pair of safety glasses and showed him some safety things. What to do and not do. Often when crosscutting a board with a hand saw I would let him hold the board to steady it.

Later on in life he wanted to use the saw.

When people say, “She’s a good-looking woman,” they usually mean, “She used to be a good looking woman.” But when I say that about Margaret, I mean it. She thinks—she knows-that she‘s changed, and she has; though less to me than to anybody else. Naturally, I can’t speak for the restaurant manager. But I’d put it like this: she sees only what’s gone, I see only what‘s stayed the same. Her hair is no longer halfway down her back or pulled up in a French pleat; nowadays it is cut close to her skull and the grey is allowed to show. Those peasanty frocks she used to wear have given way to cardigans and well—cut trousers. Some of the freckles I once loved are now closer to liver spots. But it’s still the eyes we look at, isn’t it? That’s where we found the other person, and find them still. The same eyes that were in the same head when we first met, slept together, married, honeymooned, joint-mortgaged, shopped, cooked and holidayed, loved one another and had a child together… [Julian Barnes in “The Sense of an Ending”]

What a beautiful sentiment. Its true with the advantage of age, its easy to look back and see these same things in the person I love. Thank you, Julian.

Memories come from the tiniest bit of action. I was pouring a Coke into my glass. That simple act sent my mind to recall a time when I was very young watching my father collecting water from a spring in the side of a cliff. It’s like a snap shot. As I write this I can examine more detail. We were in a 52 Ford sedan. It was painted a brownish pink tan color. The spring came out of a crack in the rock close to the side of the road. Someone had pushed a piece of pipe into the crack to make it easier to fill bottles and buckets. Dad was filling empty coke bottles.

Strange what will trigger a memory.

A man is a success if he gets up in the morning and gets to bed at night, and in between he does what he wants to do. -Bob Dylan

Recently I tripped over this quote attributed to Bob Dylan. Can this be so? My thought is this, in between morning and night may be many things that, although, one may not want to do them, they are necessary. Who for example desires to do the laundry? Clean toilets? Dust? I imagine there may be those who long to do these things. Not I. Blow your ass in the wind, Bob. I still think of myself as successful.

Success might better be described as comfort in your own skin with what you do with what you have. Me I’m skilled at fixing things. I’ve always wondered how things work. My favorite YouTube videos are typically labelled with the word “how”. So, if I’ve fixed something that day, I was successful. No cure or complete relief is available for Parkinson’s disease. So far that is unsuccessful.

I found another quote attributed to Lady Gaga (Stephanie Joanne Germanotta) ; I realized that part of my identity is saying no to things I don’t wanna do… It is your right to choose what you do and don’t do. It is your right to choose what you believe in and don’t believe in. It is your right to curate your life and your own perspective.   This woman is an outlier in her perspective and perception and far above average at her craft. Her success and life philosophy model each other. And what wonderful voice she has.

I am unsuccessful at staving off the creeping scope of the effect of Parkinson’s disease on our daily lives. It seems often there is some new something to deal with. Thank you Stephanie for your insight and philosophy. You have helped me look inward and find comfort and solice in what I do and how I give care to Cheryl. I choose to not curate our life with this insidious creeping disability. I strive for success at living in spite of the effects of PD.

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.

Early Monday morning 3/25/19 Cheryl experienced hallucinations again. The hallway became a beach. Kids without faces were running around. The bed sheets became liquid like water. Ceiling tiles squiggly lines like snakes. She told me that I had on funny clothes, but I had on jeans and a shirt.
She is sleeping now. It is 5:57AM. She just snored. She seems peaceful now.

What is love?

It can be many things. In the darkness of the night, perhaps it is patience. With little sleep comes paranoia, delusions and confusion. Love is staying awake to protect her, so she can sleep.

What is love?

Delusions come and are temporary. Love is a lifetime.

What is love?

It is simply putting someone else first. Yourself second.

What is love?

It is a mental state. It is more than physical. It is a devotion. A consuming ideal of dedication to another person’s well-being. Words provide little justice to the state of love.

What is love?

It is not that giddy giggly fealing inside when you see the one you love, that is prescient to the knowledge that you are both here, together in the state of love.

What is love?

Love is a collection of feelings too complex and too simple for an easy description. It is a communion of emotions and actions. It is bazaar in its entanglements. It is a devotion to someone not you.

What is love?

Anxiety and late evening symptoms took us to the hospital. Tightness in Cheryl’s chest.

It’s hard to get away from the fact that Parkinson’s doesn’t define your life and your spouse’s life when it consumes so much time. Today was a consuming day. Cheryl is oftentimes frustrated by the fact that what worked previously to help her feel better does not work this time. The principle medication Sinemet is only 60% effective. She has a symptom of being unable to release gas bubbles from her but without a great deal of effort.

Most of us burp and fart with ease. It’s a natural and normal activity. If it’s loud and offensive we excuse ourself politely and are slightly embarrassed. In Cheryl’s case it is painful, nauseating, and debilitating. All activity stops until the situation is releaved. On some days Coca Cola works to provide the relief needed. Some days it is Tums. Some days it’s laying down. Some days all three. It is consuming.