I found this Birthday card that Cheryl gave me for my birthday. On the front is a picture of a couple dancing. They are, perhaps, in their mid-twenties. I believe it was last year but I am not certain, it may have been the year before. In either event it was recent because I am not typically a keeper of cards. Lately however I think I have become one.

This, of course, is not a picture of us but it is how I see her. In my eyes I still see a young woman full of of vim and vigor for life. I think (I know) this is why I kept this particular card. The struggle we have with Parkinson’s disease is multifaceted but it is important, perhaps even demanded, that we do not let that define our relationship and taint our love for each other.

This woman has been my life for 53 years. We met in high school. Eventually got married. Survived college. Had three children with all the struggles that that entails. Partied with friends, celebrated kids birthdays, friends birthdays, family birthdays, played lousy bridge and poker, played good bridge and won at poker, got fat, got skinnier, got the kids through their younger lives and into and through college without major incident, watched as they matured and married and started their families and lives without us, celebrated the birth of grandchildren, celebrated the birthdays of grandchildren, admired how our children parented their kids and loved every minute of it.

Deep breath now – we have this new nuance to our relationship. Occasionally, and I say this with regret, I allow myself to forget that she has PD. I say regret simply because I forget that this nuance, this adjective, this aspect, this aside, this extra descriptor has stolen part of her vigor, not her vim, not her excitement, not her love of the children and grandchildren, not the family and certainly not the friends and friendships. Life is greater than disease. Life is greater than in ability or disability. Life is change and PD is simply another change.

As a man (I will slip into stereotypes here) I have had to adapt and adopt chores that (think stereotype) men do not normally do. This last is not universally true but I was born before the middle of the last century so think Mayberry, think Leave it to Beaver and the Cleavers, maybe even Little House on the Prairie if you are unsure of the vision of manly duties that I was brought up to understand.

A hobby of mine is bread and baking. I have successfully and sometimes unsuccessfully extended that into actual cooking and the making of dinner. Betty Crocker is a friend but can also be a fiend. If you do not believe me, poke around at the website for a bit sign up for the occasional newsletter which becomes the “every fifteen seconds” newsletter. So many recipes, so little time, so many left-overs. Some of what used to be weekend treats have become during the week meals or breakfasts or lunches. It is interesting that Cheryl has kept the “Dinner for Two” cook book all these years. The bindings have fallen apart over time so we (she really) spent some time sliding it into page protectors and into its own three ring binder. The recipes are classics and available on their web space (but do not forget the newsletters filling your inbox.)

Life is full of changes and ever changing. The only constant is change. Buddhists believe this. As I age I am constantly reminded of this and occasionally chagrined. Anger does not come with change but it is easy to be disappointed that certain things that we had hoped would remain “as is” do not. The list is long.

Parkinson’s disease is merely another change. And it sucks!

In an earlier comment I noted that it seems as though Cheryl’s brain is slowly being re-wired so that every passing thought comes straight though. Naturally this is confusing to me because I am unsure as to whether I need to respond or merely listen. We laugh about it occasionally as I will say, “Are you talking to me or are you just talking?” The answer could go either way. Through our first forty to forty five-ish years of marriage she did not do this. Often we could sit for hours quietly, enjoying ones company, occasionally vocalizing our thoughts. Talking about the kids. Telling some story about some occurrence at work. It is different now.

It seems to me that it is different in a couple of ways. She vocalizes her thoughts continuously, often at a low volume, an understandable (mostly) mumble and she will talk about nearly anything to total strangers. This last I don’t recall her doing unless we were thrown into some social situation were it was sort of expected (i.e. sitting at a common table on a cruise.) I worry, probably unnecessarily, that she will give up some piece of information that will hurt her (and us) somehow. It may be totally unfounded but I think it is this nervousness in me that causes some background anxiety. In this behavior is a susceptibility or proclivity to believe in the kindness of ones fellow man which in the case of a scammer is none existent. Hence the source of my anxiety.

Parkinson’s disease sucks. It sucks big time!

Many years ago when Mom and Dad were still alive, we would take them to “Playhouse in the Park” a local theater here in Cincinnati. Mom always seemed to be interested in watching a live play. Dad confessed to me one time that he didn’t always understand what was going on but he went anyway to please Mom. (just one of his lessons to me about love)

One of the plays performed that season was Samuel Beckett’s “Waiting for Godot”. On the ride home I asked Mom, “So, who do you think Godot is? and will they ever find him, will he ever come?” Mom answered almost immediately. Godot is death. The second half of the two part question didn’t require an answer. But for whatever reason, this play, and my mother’s answer stayed with me thirty years later. It seemed to me perceptive.

About 15 years later I found a copy of the play in Barnes & Noble. It reminded me again of that conversation and I bought it. Now from time to time I read it. This is one of those times. I picked it up again last evening and read a portion of it before going to bed. The play itself, dialog with notes about the set, movement, actor emotion is harder to read than a fictional novel. It is less visually developed and requires the reader to do that visualization. Curiously, merely one picture or sketch, fixes that visual. Forever. (Standard sets are simple. A dusty road in the country and a tree in the background maybe some rocks are all that’s needed.)

It is an allegory, of course, and allegory interpretation is in the eye of the beholder and interpreter. And my mother’s interpretation was just as valid as the scholars’ interpretation.

Scholars and critics talk of God and religion, humanity and spiritualism, existentialism philosophy. But, in some way, we are all waiting for death. How we wait, what we do while waiting, are we merely waiting or do we search for meaning in the wait? Those are some of the greater life questions that settled on me with a thump today.

Mom has been gone for a while now. Dad even longer but I think of them often when things around me spark some memory. I tell this story often about Mom. Mom was a saver of things to put things into. Boxes, baskets, bowls, crates, the clutter of life are kept in these. Or piled up over there until a suitable container is found. To this day I cannot throw a box away without hearing Mom’s voice in my head, “Don’t throw away that box! That’s a good box!” Life is full of boxes and crates and sheds and garages and storage facilities and warehouses but I have digressed.

Samuel Beckett is a person that I think I would have liked to know in life. Or, at least, I would have liked to sit and have a couple glasses of wine with.

Godot for me the present. One need not wait for it because its here. Lucky and Pozzo are the rest of the surrounding (cluttering) experience. Vladimir and Estragon are the dance with the present. They are waiting for Godot but Godot has come and they are too concerned with their dance to notice.

Early this morning Cheryl got up to visit the bathroom as is often the case with older men and women. Storage capacity diminishes with age. As she looked at the clock I bought for her a while back to help with her orientation in space time – it has more information than just the time – she became confused about what the information meant to her.

Sunday? What does that mean? That’s the thought that passed through her head. She later described this to me. Puzzling through why she couldn’t seem to understand the significance of the word.

She needs (wants) to find an explanation for all the little deteriorations that occur. It’s hard to sort out those that belong to the Parkinson’s and those that are merely “gray hair”.

I guess it’s hard for me too. I tend to think that everything is somehow related to the Parkinson’s. And everything is in a way. A certain amount of independence is given up when one decides that it is unsafe to drive a car. Cheryl has decided that. But, now, because of that decision she has added a concern, a worry, an anxiety, that it is an inconvenience to me. She is right of course. My interests are not the same as hers but I have adjusted – I think. But what I have been unable to do with great success is dissuade her from her being concerned about “putting me out”. I have also been unsuccessful at giving me a bit of warning when she schedules my time so that I can plan a bit and rearrange things as necessary.

Sometimes this causes undue tension between us. Generally speaking Parkinson’s sucks.

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.