Published in the WSJ on Friday 4/24/2020

This op-ed piece was published a few days ago. It has captured my heart. It speaks to things that I am mindful of daily.

Dying Gives Us a Chance to Confront Truth


By C. Kavin Rowe

Years ago I preached a sermon on death to a relatively young congregation. As I greeted congregants after the service, many smiled the Southern smile that means, “We know our manners but don’t like what you said.” Yet one elderly couple stopped to talk, “We’ve never heard a sermon on death here,” I recall the wife saying. “We needed one. ‘We’re old and we know what’s coming.”

The Covid-19 pandemic has swept away the illusions that led the congregation—and much of the world—to ignore death. The virus will kill only a small minority of the world, Yet its prevalence has reminded people everywhere that if Covid-19 doesn’t kill them, something else will. This realization recalls a truth central to the Christian tradition: No one will get out of life alive.

Over time Christians developed a set of practices to help us tell this truth and to prepare for death. In the Middle Ages this was called the ars moriendi, the art of dying. Today, a quick death often is seen as ideal. Yet the ars moriendi holds the opposite view: It’s a good thing to see death. coming and to have time-to-prepare. Time and habit provide the chance to live fully and—even at the last hour—become a mature human being, one who tells the truth.

I know this firsthand because my dying wife tells the truth. When she was referred to hospice some time ago, after a long and painful decline, she simply noted, “I don’t want to die, I want to finish raising our son.”

Through attentive care, hospice has extended her life—and with it the chance to talk about our successes, failures, hopes, sorrows, beliefs, and doubts. The demand to face death created a new chance to grow closer together and deeper in our faith. We don’t have time to argue about what a “messy kitchen” means when we’re focused on sharing the truths we need to hear: I love you. I wish we could grow old together. I wanted to know our son’s wife and our grandchildren. I will be with you until the end.

We have long read the Bible. But facing death has brought it near, and its words now speak directly to us. We find comfort in the Psalms: “He lifted me out of the desolate pit, out of the mire and clay”; “Taste and see that the Lord is good.” And in the words of Jesus: “Let not your heart be troubled; and do not be afraid; “I am the resurrection and the life.” And, when my wife has breath enough, we also sing the Kyrie eleison. Lord, have mercy.

And he has had mercy: Jesus teaches that the way to a full life is through facing death. That teaching holds up. My wife has not been healed and will never get better. But somehow we are on the path of life. Telling the truth and training for death is agonizing, but it also has provided consolation. Death no longer seems far away; training for it and experiencing its closeness has brought certain gifts. These gifts of clarity of purpose and love are what human beings spend much of their lives longing for and failing to find.

Covid-19 it not a blessing. It is one more obvious, terrible instance of a broken world. But amid all the reasonable concern, we shouldn’t lose sight of the deeper cause of our anxiety—our mortal fear—and the unprecedented chance within this life to become fuller, richer and more joyful human beings.

When we accept the truth about our mortality, we can also experience remarkable freedom: to take the time to say “I love you”; to stop nursing resentments, thinking that forgiveness can always wait for another day; to cease pretending that little annoying things matter so much; to pick up our heads and look at the beauty of the world; to examine our beliefs about what really, really counts in life; to mend relationships; and, for those who’ve never tried it before, even to pray.

No sane person would ever give thanks for a pandemic. But if we take the chance it gives us to become truth-tellers, lovers and reconcilers, we may well wind up giving thanks for what we have become.

Mr. Rowe is a professor at Duke University Divinity School

Mr. Rowe makes some excellent points.

“Telling the truth and training for death is agonizing, but it also has provided consolation.” As I watch the excruciatingly slow decline in my Parkinson’s patient wife I am mindful of hers and my morbidity. As Mr. Rowe reports, no one escapes death. Age alone will get us all in the end. Is it arrogant to pray that she dies first so that I can take care of her to the end? This is a question I wrestle with often. Arrogant in the sense of; what makes me think I can outlive her? My intentions are pure I think. Are they arrogant in the sense of, I am the only one who can look after her properly?

The prayer is wishful and nuanced with maleness and man-splaining. And laughable. Man plans. God laughs.

Thinking about it, prayer has a different meeting. To “pray for something” is an odd thing to say. Whatever the something is won’t drop in from the sky even if God answers your prayer. And what does that mean, “answers your prayer.” What does it mean to pray to someone like a saint? What is prayer?

To me it is a mindfulness. A meditation used to calm active mental dissonance. Quiet thoughtfulness.

One does not have to sit in a dark room to achieve this and journaling helps with focus. Writing pushes me to think and decide on which words are the precise emotion or idea to convey. The beauty of language is its ability to convey nuance, color and illumination. Illumination of ideas is unavailable in darkness.

… “we can also experience remarkable freedom: to take the time to say “I love you”; to stop nursing resentments, thinking that forgiveness can always wait for another day; to cease pretending that little annoying things matter so much; to pick up our heads and look at the beauty of the world; to examine our beliefs about what really, really counts in life; to mend relationships; and, for those who’ve never tried it before, even to pray.” — I hope so.

Perhaps that is what Parkinson’s disease, Covid-19, Cancer in all forms, Flu virus, Tay-Saches disease, ALS and the all the rest of a plethora of miladies known and yet unknown are meant to teach us; the beauty of the world around us and what really counts.

Yesterday She Slept Late

She slept very late this morning. I awakened her at 10am and did not leave her. This seems to be, more and more, a common occurrence.

There are many symptoms of Parkinson’s disease and not all “parkies” get them. The disease and treatment is largely anecdotal. “Whatever works” is a good description.

Imagine a wide range of symptoms that mimic other maladies. The tightness in the chest of a heart attack or simply a gas bubble. The dizziness of a stroke or low blood pressure or low blood sugar or simply exhaustion. The stiffness or inability to move one’s limbs like paralysis or arthritis or simply old age. Sensory hallucinations, peripheral neuropathy, loss of sense of smell and orthostatic hypotension are other symptoms. And Parkies experience some or one or all of these.

Interrupted sleep patterns are common. Vivid dreams are common. Hallucinatory dreams that merge with reality upon awakening are common. Delusional thoughts intrude upon normal cognition. It is quite a ride mentally. Often the changes are so subtle the parkie does not notice and any caregiver, if not alert to the subtlety, will mistake the behavior change for a mistaken memory or ignorance or a misunderstanding or even hatred and anger.

So, after two, three or four days of sleeping poorly, she will sleep late. Its good for her. She is exhausted.

Today she hit me. In her dream… I wish I could see into her head to see what she was chasing. Sometimes she can remember. Most times not.

Whatever works.

A Late Day

She slept very late. Peacefully until about 8:30am when I began to tease her into wakefulness. She was very resistant. I did not succeed until 10:30am. At this point she off her medication schedule by 3 1/2 hours. That fact is important to a parkie. She is going to have a rough day.

She awakened in a delicate mental state. Dream like, probably, from her perspective. I heard her get up and use the toilet and waited for her to pop out of the bedroom door. She did not for some time but I thought she was putting on her morning clothes which is usually a pair of sweatpants and her favorite brown jacket. After waiting for a suitable time, I went to check on her. She was sitting on the bed waiting for someone to come get her.

In my usual fashion I asked how she was feeling. She responded with “Okay.” And then she asked, “Who else is here?” I had the television on listening to a Sunday newsy blather about nonsense in the rest of the world or, at least, New York City and Washington, DC. I told her no one but us was here. She did not want to come out if other people were here. I helped her to the kitchen table for medication and breakfast. Worried a little that I had let her go too long.

7am medication dose at 10:30am at this point. She eats some Life cereal to go with it. Crane-Apple juice and Dove chocolate round out the meal. Dove chocolate has become a passion. She eats one or two with every meal or simply to snack. I always buy some when I shop at the grocery or pick up a prescription at the pharmacy. (Walgreens and Walmart have the best selection but she only eats the dark chocolate(red) or milk chocolate ones.)

I sat with her for a bit and tried to not hover over her while she was eating. She brightened slowly. Read the newspaper. Looked at the comic section. She came over to sit with me and I restarted the recording of CBS Sunday morning. It is a favorite show of hers that we watch together. Usually while enjoying some bakery treat and tea for her, coffee for me. Most times it is a restful Sunday relaxation. Today, though, she watched about 30 minutes and wanted to lay back down. I helped her back to the bed.

The day moves on. Twenty minutes or so later she is moving around thinking perhaps a little Coca Cola and some cheese crackers will help. So she has a bit of lunch. And some Dove candy, of course.

I am assured that we will get through the day. Live in the moment. Parkinson’s disease sucks.

Later in the day, as we were eating a simple dinner of soup and a sandwich, she explained more of what she was feeling and seeing this morning. She sees small children in our bedroom sometimes at night and sometimes early in the morning. We have a queen size cannonball bed. We bought it early in our marriage. It is comfortable. The foot board has pillars at either end with a ball shape at the top. These transform themselves into little black girls at night. We also have some needlepoint pictures that she did many years ago. They are hanging in an oval frame and often at night transform themselves into a couple of people peering over the back of the chair that they are hanging behind.

The Parkinson’s affected brain perceives things differently. A neurotypical brain constructs reality from the sensors it has to detect the surroundings. A parkie brain often no longer is able to construct the same reality from what it sees, hears, touches, tastes or smells (if smell is still available).

As was noted earlier Parkinson’s sucks.