My search for grace and meaning after a former care partnering life with a wife who suffered from Parkinson's disease and dementia giving her a confused and disorienting world.
And Sweetest Day are arbitrary celebrations that I do not get. If you are someone who thinks those are important I apologize for any offense you may get from this essay but why did you focus on one single day? Well maybe two? Why not celebrate that relationship, that connection every day that it exists?
Valentines Day seems to celebrate sugar and chocolate. Sweetest seems to celebrate flowers. The months that each are in, February is filled with frantic anticipation of warmth returning and, October, dread of warmth leaving the Earth seem to posess little reason for flowers and candy. Nevertheless, clever marketers have made up a reason and then filled it.
Tony Decouple was badgered by Nick and Gayle on CBS the other morning when they had run out of mudslides, fires, snow and Donald to talk about. Tony is not a fan of a big deal special day as I am not nor is Debbie. And when Cheryl was with me she was not or pretended to be as she discovered how poor I was at acknowledging dates. I have had my wedding anniversary ingraved inside my wedding ring since day one.
My term for it is date dyslexsia. Many of you will say just write it on the calendar. That works but what if you have calendar dyslexia too?
Debbie and I spent time together yesterday. We had lunch and enjoyed the cold but sunny day here in southwestern Ohio. Discussed movies and kids but did not exchange candy and gifts. Maybe we are older and wiser and less enamored with the made up marketing ploys. (Maybe I screwed up.)
We first met after Sweetest Day last year so that dyslexic event was not an issue.
I have been thinking about this paraphrase that Debbie has used many times in our conversations. “And whether or not it is clear to you, no doubt the universe is unfolding as it should.” is the line from the final stanza of Desiderata by Max Ehrmann written almost 100 years ago. I use it on the masthead of my blog. It is a calming peaceful poem. His view of the universe is much like mine a view from increased years. Some would say from wisdom. My years are more increased than his when he wrote it.
A principle of thermodynamics is that the entropy of the universe is always increasing. Debbie, when she says unraveling, is speaking a clearer pragmatic practical truth about our universe. It is unraveling as it should or more correctly as it will. Some would say God’s will. I does not matter as the unraveling happens on its own. Embrace it.
One should be aware of impending doom. Reporters of the weather often drill this concept to the masses of their audience. Aware but do not fret over it. In the case of weather, use the information to dress accordingly. Other situations present other doom scenarios. Prepare as best you can and then move on with your life. Progressive insurance tells you to bundle your home and auto insurance. I do just not with them. Boy scouts say be prepared. (yada yada yada)
It is a mistake to base your entire world view on no more than your own experiences. Max Ehrmann admonishes us to: Speak your truth quietly and clearly; and listen to others, even to the dull and the ignorant; they too have their story. That is advice I got from my own father long ago. Less elegantly, he said, you should listen to the other guy even if you think he is a jerk because he might actually have a good idea. My dad was a really smart and practical guy. Sometimes I miss conversing with him. It is important to talk to people who do not share your life philosophy, that was his point.
Be yourself. Especially do not feign affection. Neither be cynical about love; for in the face of all aridity and disenchantment, it is as perennial as the grass. Another line from Max, “aridity and disenchantment”, I read as highs and lows. Every love has that in it. (Give and take – if you like that better.)
Perhaps Debbie and I should sit and remaster Desiderata for our time together. Or perhaps not. The words are a philosophy for the spiritual but unchurched, for the Buddhists in a Catholic body like me.
There are a variety of abundant interest (AI) tools out there to play with. And as I am wont to do upon occasion I will use other depictions of the “AI” combination that is often knowingly translated as artificial intelligence.
In a discussion with Debbie, she stated that mad is not a primary emotion. I actually do not think of “mad” as an emotion at all. I think of it as a reaction to some stimulation, such as, some one jumping in front you in a line you’ve been waiting in for some time. But in this instance I felt the need to invoke the intelligence artificielle (French is so cool) and find out Microsoft Copilot’s take on mad as an emotion.
Is mad a primary emotion? I asked copilot (automatic ignorance) and it responded – Yes, “mad” or anger is considered a primary emotion. Primary emotions are basic and universal feelings that are instinctual and immediate responses to stimuli. Alongside anger, the other primary emotions typically include:
Happiness: Feeling joy or contentment.
Sadness: Feeling sorrow or grief.
Fear: Feeling scared or anxious.
Disgust: Feeling repulsed or offended.
Surprise: Feeling astonished or amazed.
These emotions are the building blocks for more complex, secondary emotions that we experience.
… and it continued; What’s on your mind about these emotions today?
Mostly, huh? Love is not a primary emotion?
There is something special or maybe weird or eerie about talking to a computer (it has voice recognition) and getting pseudo human responses. The internet of all knowledge is a huge database now and it is getting huger by the second. Love is a combination of feelings and this game that I was playing with my laptop was fun to play, albeit, not useful as anything other than entertainment.
“Copilot, write a love sonnet to Debbie.”, I said in a moment of playfulness.
Absolutely! Here is a love sonnet for Debbie:
To Debbie, my eternal guiding light, Whose smile outshines the stars in heaven’s height, Thy presence warms my heart through day and night, And in thy love, my soul finds pure delight.
With eyes that sparkle like the morning dew, Thou art the muse who paints my skies so blue. Thy gentle touch, a balm that feels so true, In every breath, my heart belongs to you.
O Debbie, thou art cherished, dear and fair, A constant flame that brightens all despair. In every whispered word and tender care, I find a love beyond compare.
Forever thine, in passion’s sweet embrace, Our love shall soar and never leave a trace. (Wait. Wait. What?)
I hope she loves it! Would you like me to help you with anything else?
Other than Copilot seems to be slightly confused about the structure of a Shakespearean sonnet it is not bad. On the other hand, ABAB CDCD EFEF GG does not forgo A rhyming with B and so on through the effort it put out above. It is very mushy. William would have crushed the paper, I imagine. I crushed the paper electronically and I asked it for another and I specified that certain words be used (caress, hand);
Certainly! Here’s a sonnet for Debbie with the words “caress” and “hand”:
O Debbie, with a gentle touch so sweet, Thy hand in mine, a bond that none can sever. In every loving caress, hearts do meet, In tender moments, lasting now, forever.
With every glance, thy eyes do softly speak, A language known to lovers, pure and grand. Thy touch, a whisper on my willing cheek, Thy caress, a dream, where hearts expand.
O Debbie, thou art joy in every breath, With thee, the world feels bright and ever grand. In love’s embrace, I’ll cherish till my death, And always hold thee close with tender hand.
Forever bound by love’s sweet, gentle grace, In thy caress, I find my dwelling place.
I hope Debbie finds this sonnet as touching as intended! If you need anything else, I’m here to help. Better, I think, pretty many “O Debbie” s but better. Imagine a poorly lighted Shakespearean stage. Perhaps a moon lit stage with the actor looking up slightly off to stage left. So with all that love soaked emotion hiding out in a bunch of circuitry and microchips, why is love not a primary emotion? It did a better job with structure this second time.
I have diverged from my original thought though. Copilot wrote to me, “Primary emotions are basic and universal feelings that are instinctual and immediate responses to stimuli.” This implies love is neither an instinctual nor an immediate response. It shouts there is no such thing as love at first sight! (Maybe I am stuck on primary.) I think it is also uncomfortable in many ways. Love is, of course, a combination of many feelings. There is connection. It has to start there, with a connection to the other person.
If one feels (emotes) all of these for the same person is that what defines love? Tricky one. Merriam Webster says “a quality or feeling of strong or constant affection for and dedication to another.” The American Heritage Dictionary of the English Language that I have had kicking around since 1970-something has two notes. 1) agitation of the passions often involving physiological changes (use your imagination) and 2) any strong feeling as of joy, sorrow, reverence, hate or love arising subjectively rather than conscious mental effort. I think that covers it pretty well.
In my never ending search for a manual, however, I decided more research is needed. I visited several psychological web pages and found this handy emoto-wheel. Why did the asinine insistence of Copilot only tell me about six primary emotes? Clearly there are eight and love is in the crack between two of them. I stole this from an organization called Six Seconds.
And “mad” is not a primary emotion. Neither dictionary or any psychology discussion uses the word mad. MAD is the airport code for Madrid’s airport. Plutchik uses the term rage but that does not count. (The heading image is from Tiny Buddha.)
“Winter is coming!, is a line repeated often in the Game of Thrones series. In the middle west, here in southwest Ohio, many are highly focused on the weather. It is the only reason I turn on the TV news. The weather guys and gals have the same message, precipitation of some sort is coming. Saying that out loud though is undramatic. “Pink!”, John Gumm (the gummer) says to the side of the camera while he points and gestures and gives a short lecture on various weather models.
Donald Trump tried it years ago while talking about hurricane tracks. He was not nearly as effective as John. John is good at it. Other weather folks merely report that we’re all gonna die. John is able to explain with confidence the amount of death that will be achieved and how you will perceive your own death while you are dying.
Right now at 4PM the sun is shining. It is cold outside so any of the singing birds are shivering while they sing. The smart ones have left for Florida. Tomorrow at 10:06AM, death will come.
“Winter is coming!”, screamed the knight staffing the wall. He then politely bowed his head as the king cut it off. The king remarked to his sons that he had brought with him, “If you sentence someone to beheading, you should be the one to do it.” Is there honor in there somewhere? It is a gruesome series.
Keep up the good work , John. It is going to snow here maybe. It will be inconvenient for a few hours. The internet might die if a tree falls on the wires outside.
Early in the morning after awakening I find coffee and turn on a newsy program to get information about the latest weather history. This time of year and on this day that Google Calendar tells me is Native American Heritage Day but the sale folks tell me is Black Friday, the weather folks are doing their best to get us out to shop before the temperature gets to absolute zero. In between the commercial advertisements are entertaining.
A cute little girl asks her mother, “Do crabs have eyebrows?” Today it made me laugh. Why did I laugh on this day?
Who knows? I certainly do not. I tripped over a Spotify playlist of Lindsey Stirling and her high speed electric violin playing and it picks up my spirit today.
And the ads have made me think of Christmases past and hope for Christmases future.
Perhaps I need to be in a crowded place with a hot chocolate in my hand.
I ask myself that question several times per day. What is your hurry?
My encouragement to myself is “what is your hurry?” At this stage of my life the answer is I do not know. (IDK)
I do know that when I close my eyes in the sunny shade of these woods and empty my mind as best I can, and then I open my eyes again the evergreens are a brilliant color with a deeper blue. Why is that? IDK. I have hurried through life without looking.
Why did I pick this trail for today’s activity? A day ago I wrote that I am not a child anymore and I am not youthful but I still see a world of wonder with youthful eyes. I remember long ago when Cheryl and I came here we hiked this trail more quickly than I do today. I am not in a hurry. Maybe that memory brought me up the cliff face. IDK. Today I stopped often to rest but also to look, think, remember and read and listen while I read.
I selected several books to bring with me on this retreat and personal retrospective. I selected first “So long and Thanks for the Fish” by Douglas Adams. I have read a couple of the others from the Hitchhiker’s Guide to the Galaxy trilogy. There are five books altogether and the theme is cynicism and simultaneous mediocrity as we splash through life. Wonko the Sane explained why he became a hermit – “The sign read: hold stick near the center of its length. Moisten pointed end in mouth. Insert in tooth space blunt end next to gum. Use gentle in-out motion. It seemed to me, he said, that any society that had so far lost its head to put such a detailed set of instructions on a package of toothpicks, was no longer a civilization that I could live in and stay sane.” We have a lot of things like that going on. “Caution HOT!” is printed on the side of the McDonald’s coffee cup. I always think, “I hope so.” Why are warning signs like this posted? I passed several today on railings erected along the trail. The other side of the rail was a sheer drop. “DANGER No Entrance ” is printed on the sign. IDK. I did not hurry through the small volume. Several times walking today I found myself reading on a convenient log or outcrop of rock.
Why did I select this book to read first? IDK but it has been many years since I read the Hitchhiker’s Guide to the Galaxy and the absurdity of the story line is compelling. Maybe it is time to review my life and start anew. Maybe I long for the next great thing. IDK. There is no hurry.
There will be time to take time for wonder. There is no hurry.
I thought; Just sit and observe. Just look and see. Just be a part of the consciousness. Just be.
A bench by the path in a park. Birds and bugs. A chipmunk forages. Snippets of mumbled conversation and comments of walkers and those who are walking. A view of the lake. A bird calls.
Autumn in mid-season. Midday but the sun low. A bright warm day as its radiance diminishes.
Lichen on the Oak near. Far, mostly green but here and there another color as the deciduous decide the weather to come, the darkness to come.
Quick steps now. A duck calls to its mate. Music. And many walkers cannot disconnect. A child counts bounces of his basketball. A hundred ten!
I walk on. From the other side of the pond, a different view. An Osage is fruitful. A tiny spider walks up my arm and wonders why I am atop its bench.
I recently asked to be a part of and help with a ministry at our church called GriefShare. It is a support group for those of us dealing with the loss of a loved one. Mother, Father, Sister, Brother, Son, Daughter or Friend – Any or all of these losses in life. They are common and expected but not hoped for losses and we grieve.
I do not know what I am hoping to gain from this experience. For me, having spent a great part of the past few years caring for Cheryl, it may simply feel comfortable to help others.
The program itself which has a website and an abundance of videos and formal presentations seems to be aimed at guiding the participant toward some stable existence without whoever has left this existence. In many ways much of that journey occurred with me while Cheryl was struggling with her Parkinson and her accompanying dementia. I purposely try to remember things we did before her Parkinson. Sadly, perhaps because those are are farther in the past or perhaps because the Parkinson and dementia were so overwhelming during the past six years or so, this memory exercise is hard. I still make the effort.
It is not so much that I want to forget the past few years but it is very important for me to remember the fun we had for the few years prior. Those are the years when we hiked in parks and through the woods. Those are the years we out bid everyone for overnight hotel stays. Those where the years when we hopped in the car suddenly on a weekend and drove to Illinois because a grandson was coming. Those where the years we hopped in the car and drove to Indiana because a granddaughter was coming. Those are great memories. And when I purposely think about those times I do not see her deathly ill face.
Cheryl still lives in me and I do grieve for her but I think the long time we had with Parkinson and cognitive issues (I think) helped me to come to terms with her eventual death. She was very much not the wonderful person I spent fifty years of my life with during the last six or so years as she drifted deeper into dementia. I have written this before to myself but I am happy for her that she is gone. She is in fact not suffering anymore.
And with that thought I do wish for her to be here with me. Happy. Disease free. Without encumbrances. Without walkers and canes and wheelchairs. I wish she was her slightly overweight but curvy self wishing to lose a few pounds by doing water aerobics. I wish, I wish, I wish.
I have let her go but I still grieve for her and will always. How can I not?
GriefShare emphasizes that grief is a journey. Life is a journey too. I use a picture of us that my daughter took of us just a few years ago as we walked back to our spot after completing a fund raising walk for Parkinson research. I still use it and another version where Cheryl is ghosted. We are still journeying through life. She is still with me. I hear her admonish me for being a stinker because I am upset about something, usually a trivial something maybe yelling at another bozo driving along. She would tell me to calm down while she was still riding with me physically She is still traveling life with me even though she is not here. I still talk to her. I think of grief as a nuance to life’s journey.
Grief will always be there. My sister died in 2008 of MDS a form of blood cancer. My father died a few months before that in 2007 of colon cancer. My mother died in 2016 of old age. My brother died in 2020 of heart failure. Grief will always occur in life. It is one aspect of the journey.
At this stage of my life I search for purpose. A few years ago as Cheryl’s situation worsened I convinced myself that my purpose was to take care of her. That was true but I am beginning to think that there is more. I am wondering what that more is.
Thinking all the way back to high school, I have had a fascination with poetry of all sorts. I credit Fr. Averbeck and his English Literature class for this fascination. His love of Shakespeare and poetry came through when he taught. The school was re-organizing the scheduling for many classes and trying to fit as much as possible into the school day. Eng. Lit. was merely thirty minutes long. It was the best thirty minute block of time in my day.
Poetry invokes a picture which develops into an emotion and a feeling which awakens other senses. Smells erupt and colors appear as you let the words tell the story of the author has penned. The picture may be very different from the words. The picture may be very much like the words. Listen. You will see it.
With Cheryl gone, I find myself reading more and reading poetry out loud. I am surprised sometimes at the involuntary emotion that sounds in my voice. I am not surprised at the memories that are awakened by various poems. This one – Casey at The Bat – is sort of corny, and yet, my voice always wavers and most times tears well up in my eyes. It takes me to a time when our youngest child had to memorize a poem in grade school. His intention was to find a short poem. I challenged him to commit to memory “Casey At The Bat”. I will learn it with you. It became a dinner time thing.
I would say, “The outlook wasn’t brilliant for the Mudville nine that day, the score stood four to two with but one inning more to play.” We traded lines back and forth. When he recited the poem in class for the rest of the students and his teacher, he told me one of his classmates asked him, “Did they win?” I laughed. He went on to tell me it was the longest poem anyone recited.
Those are good memories. It should not be surprising to me that tears of nostalgia appear in my eyes.
Casey at the Bat By Ernest Lawrence Thayer A Ballad of the Republic, Sung in the Year 1888
The outlook wasn’t brilliant for the Mudville nine that day; The score stood four to two with but one inning more to play. And then when Cooney died at first, and Barrows did the same, A sickly silence fell upon the patrons of the game.
A straggling few got up to go in deep despair. The rest Clung to that hope which springs eternal in the human breast; They thought if only Casey could but get a whack at that— We’d put up even money now with Casey at the bat.
But Flynn preceded Casey, as did also Jimmy Blake, And the former was a lulu and the latter was a cake; So upon that stricken multitude grim melancholy sat, For there seemed but little chance of Casey’s getting to the bat.
But Flynn let drive a single, to the wonderment of all, And Blake, the much despised, tore the cover off the ball; And when the dust had lifted, and men saw what had occurred, There was Jimmy safe at second and Flynn a-hugging third.
Then from 5,000 throats and more there rose a lusty yell; It rumbled through the valley, it rattled in the dell; It knocked upon the mountain and recoiled upon the flat, For Casey, mighty Casey, was advancing to the bat.
There was ease in Casey’s manner as he stepped into his place; There was pride in Casey’s bearing and a smile on Casey’s face. And when, responding to the cheers, he lightly doffed his hat, No stranger in the crowd could doubt ’twas Casey at the bat.
Ten thousand eyes were on him as he rubbed his hands with dirt; Five thousand tongues applauded when he wiped them on his shirt. Then while the writhing pitcher ground the ball into his hip, Defiance gleamed in Casey’s eye, a sneer curled Casey’s lip.
And now the leather-covered sphere came hurtling through the air, And Casey stood a-watching it in haughty grandeur there. Close by the sturdy batsman the ball unheeded sped— “That ain’t my style,” said Casey. “Strike one,” the umpire said.
From the benches, black with people, there went up a muffled roar, Like the beating of the storm-waves on a stern and distant shore. “Kill him! Kill the umpire!” shouted some one on the stand; And it’s likely they’d have killed him had not Casey raised his hand.
With a smile of Christian charity great Casey’s visage shone; He stilled the rising tumult; he bade the game go on; He signaled to the pitcher, and once more the spheroid flew; But Casey still ignored it, and the umpire said, “Strike two.”
“Fraud!” cried the maddened thousands, and echo answered fraud; But one scornful look from Casey and the audience was awed. They saw his face grow stern and cold, they saw his muscles strain, And they knew that Casey wouldn’t let that ball go by again.
The sneer is gone from Casey’s lip, his teeth are clinched in hate; He pounds with cruel violence his bat upon the plate. And now the pitcher holds the ball, and now he lets it go, And now the air is shattered by the force of Casey’s blow.
Oh, somewhere in this favored land the sun is shining bright; The band is playing somewhere, and somewhere hearts are light, And somewhere men are laughing, and somewhere children shout; But there is no joy in Mudville—mighty Casey has struck out.
Copyright Credit: n/a
I love that poem. I can hear the crowd and smell hotdogs. But mostly I can see Scott as a young boy stretching his arms and growing into himself. This effort by Thayer is an ode and tells a story. Many poems that I read are more prayerful and and paint a much different picture and evoke a feeling of calm. Some can enrage. This one brings with it family time.
It is a strange new experience for me this new existence without Cheryl. In order to fill a large part of the time void I have been riding my new bike around for exercise, but mostly, I am exploring bike paths that I have not ridden on before. Occasionally I ride on streets nearby but car drivers generally scare me. I am an old man and I have first hand experience with falling down. I imagine being knocked down by a car would be significantly worse.
I am sitting here in my living area next to Cheryl’s empty chair. between that chair and mine is an end table. It is one of a pair I built many years ago as an off the wall furniture building project I created for myself. There is no special significance to any of that except that one evening last summer Cheryl began to scratch off the coating of varnish that I had finished them with. Over a period of several days she picked at a nick on the edge of the table until she had exposed a flaw in the finish. She worked on that flaw until she had scratched an oval area about the size of a soup spoon. I may have been upset at the time but I distinctly remember thinking to myself, I can refinish the table later sometime.
I think I shall never do any refinishing on the table. It is such a strong image that I get when I look at this little marred spot. She was so very determined. Her only tool was her thumbnail.
As I ride my bike around I think of things like this. How memories can be remembered by an insignificant prompt like a scratch on a piece of furniture. Scratches give furniture life.
Yesterday I teased my neighbor to ride with me. He had expressed an interest before. Occasionally he tells me about seeing a used bike for sale somewhere. I bought a new bicycle and as a result have a spare. He told me he has not ridden a bike since grad school.
It was a good day to ride. It was relatively cool. It was mostly overcast. He could not find his helmet in the garage clutter. I told him we were going to a park and it was mostly flat. As long as he did not fall off, he would not need a helmet. It was my own little joke. Besides I continued, aim for the weeds if you are going to fall over.
We started by riding around the park loop which is a bit shy of two miles. I took him over to a connector that joined this loop to the nearby airport loop. I stopped at the bottom of a long gentle grade and asked if he wanted to continue. He said yes and off I went. At the top of the grade I stopped near a bench to drink some water and watch the airplanes for a bit. A little out of breath, he remarked that the grade was longer than he expected. I laughed and told him the reward for going up was coming back down. We continued on for a couple more miles of flatness and at another bench stopped and watched the planes some more.
We turned around and headed back to the car. When we got there he remarked that he had forgotten that he had hand brakes. His old bike had a coaster brake. It reminded me of another story.
Many years ago Cheryl and took a Road Scholar tour to Mackinac Island in northern Michigan. One afternoon that we had to ourselves we rented bicycles to ride around the island. I tried to get her on a tandem bike with me but she was not having it. We rented a couple of bikes that looked like old Schwinn bikes. Both had coaster brakes. I had not ridden a coaster brake bike since I was about ten years old. I was fine until we stopped at an ice cream place on the island to get a snack. I had a mild panic stop by dragging my feet. Cheryl however made a smooth controlled stop because the only kind of bike she had was one with a coaster brake.
Old furniture and conversation and bike riding remind me of life stories with Cheryl. I hope that it will always be that way.
It was a good day. We only rode for eight miles which is coincidentally the approximate distance around Mackinac Island. When I asked him today how his legs felt he replied fine, but I can still feel the bicycle seat. He used to come with Cheryl and me to pizza Tuesday. He is a good friend.
Yesterday, I left him hunting for his helmet in the organized clutter of his garage as I left to visit with my son. Perhaps when the bicycle seat impression fluffs back out and if he finds his helmet he will come again.
Adjunct_Wizard 