Ephemera

To The Best Of Our Knowledge is a program on National Public Radio. On the way to my ride Sunday they aired a program called “Poetry in a Troubled Time”. The program began with reactions to the pandemic, the “Troubled Time” to which the title refers. It opened with a pandemic poem by a writer in Lake Mills WI, which garnered national attention. I was riding to Lake Mills that day, so the program seemed apropos.

Charleis Bukowski wrote:

“all theories
like cliches
shot to hell,
all these small faces
looking up
beautiful and believing;
I wish to weep
but sorrow is
stupid.
I wish to believe but believe is a
graveyard. 
we have narrowed it down to
the butcherknife and the
mockingbird 
wish us
luck.”

Host Anne Strainchamps called the poem “pretty dark”. Charles Monroe-Kane took great hope in the phrase “wish us luck”. Strainchamps wanted the program to be about poetry “as a refuge, as a consolation”. Monroe-Kane noted, “…heartbreak is where poetry is. That’s where poetry comes in. That’s what it can do. Look, poetry also helps us in healing. You don’t need to be healed if you don’t have pain. You got to have an injury that need the healing, so there’s going to be a lot of injury in this as well.”

Edward Hirsch noted that all poetry is about death, in that it focuses on the ephemeral – “we are trying to save something that is passing.” Perhaps all of life is about death. Nostalgia is certainly about death. How much of our memory is an attempt to “save something that is passing”? To what extent is writing a blog the same – but a particularly ineffective form of trying to “save something that is passing”? We write and we post and (maybe) someone reads it on the day it is posted. While it is preserved on the internet, how often is it seen after those first days?

“Some things in life feel unendurable yet they have to be endured. They are unbearable, yet they have to be borne.” This was Hirsch’s purpose in writing an elegy to his son, but is also about life itself. We all encounter, at some time, something that feels unendurable, unbearable. Yet we (most of us) endure and bear and move forward in life. We don’t all write poems, but we endure. How do we move from endurance to embracing life again?

To what extent is embracing life embracing ephemera? I worked in radio in an era when it was not preserved. (I just listened to Sunday’s program and read its transcript to be sure I quoted people accurately.) What we did went out over the airwaves, live, at the speed of light. It came into your home instantaneously. The sound waves traveled to your ear and by then we had moved on. In the year 2000, my brother and I were each asked to reflect on our time in community radio – for him, the 1960s, for me the 1970s. He wrote “…you did it, you sent it out into the ether, and people heard it or didn’t. It was the ultimate in ephemerae, leaving a trace only in the minds of those who did it or heard it…”. I wrote “…the reason I enjoyed radio was its ephemeral quality. What I did went out over the airwaves and was gone.” (Neither of us knew what the other had written until the book was published.) Now I write a blog. Is it something about aging that I now try to preserve, not just experience, life? Or is life about sharing? Is it not enough to experience? Is it necessary to share that experience?

In 1976 or 7, I wrote in my journal: “It’s not the experience…it’s sharing the experience.” I was in the midst of something that seemed profound at the time. I was alone. I called a friend to come over. I knew then that the communication of the experience was as important to me as the experience itself. Communication….communion…community. Is it an accident that these words are so similar?

Forgetting where your keys are, or forgetting what your keys are?

One of the definitions of Alzheimer’s Disease is that it is normal to forget where you put your keys. It is not normal to find your keys and not know what they’re for.

My father died of Alzheimer’s Disease (AD, also known as SDAT – Senile Dementia of the Alzheimer’s Type) at age 78. He recognized no one around him. My mom, on the other hand, died at age 93. She not only knew who I was, but knew that, since it was Monday, it was my day off and that was why I could be with her all day. The fact that she was dying went unsaid. She died just as it got dark that evening.

How does one die of Alzheimer’s Disease? Forgetfulness goes beyond just “what are these things for?” to forgetting how to chew and swallow. The immediate cause may be dehydration or malnutrition but the ultimate cause is the disease. My father’s autopsy report mentioned cardiac arrest and multiple organ system failure…duh. He died when his heart stopped beating, not really because it stopped beating. He could have remained alive longer with IV fluids and a feeding tube, but to what end? He had made that decision long before, as have I. If you have not done it yet, write an Advance Directive – a document that specifies what care you want (and don’t want) in the event of a terminal condition. I know – you don’t want to think about that. Death happens to other people. Guess what? It happens to all of us. But you’re not old. Guess what? Not everyone dies of “old age”. Ultimately, there is one terminal condition in life – it is birth.

Alzheimer’s is only definitively diagnosed after death, from examining the brain. In his case, they even left that out until we demanded an addendum to the report. They had examined his brain but neglected to include those findings in the report. With research, we may be able to diagnose the disease short of death; maybe even treat, cure, or prevent it.

An aside: you may notice that “cure” is a rarity in medical science. We tend to “treat” disease by administering medications to control symptoms – medications that often must be taken for life and at great cost. We don’t “cure” a whole lot of diseases. The cynical among us may say that there is little profit in cure and a lot of profit in lifelong treatment.

Prevention of SDAT may well hinge on a lot of the same factors as many diseases – eat well, sleep well, stay physically active, control blood pressure (and have the right genes).

The PBS series Nova produced a documentary on the WRAP (Wisconsin Registry for Alzheimer’s Prevention) study. It is an hour well worth your time. There were damp cheeks in the program, on both sides of the screen.

The project enrolls the children of people diagnosed with AD (and a control group of people without a familial history) and follows them longitudinally. Every few years, participants complete a lengthy questionnaire (with another completed about them by someone who knows them well) and complete a lengthy battery of neurocognitive tests. Additional optional studies include MRI, functional MRI, and PET scans; lumbar punctures; and treadmill testing.

As a test subject, some of this is difficult, as it involves testing to failure. How long a digit span can you recite backward after hearing it once? You get longer and longer spans until you fail. How steeply can you walk up a treadmill at a set speed? You go until you can’t.

Can we see changes in brain structure and function before one develops symptoms of the disease? Does cardiorespiratory fitness delay or prevent onset of disease? Can we see biomarkers of disease in the brain or the cerebrospinal fluid prior to recognizable disease onset? If so, can we address those markers and influence the disease path? These are a few of the questions the study aims to answer.

What’s it to you? Research shows the children of those with AD are more likely to contract it themselves. My father, his brother, sister, and mother all died of AD. On my maternal side, I have questions about a couple of aunts. But you’re not me. According to the Alzheimer’s Association, “1 in 3 seniors dies with Alzheimer’s or another dementia. It kills more than breast cancer and prostate cancer combined.” The longer you live, the greater are your chances of developing Alzheimer’s Disease. If you are a woman or person of color, your risk may be higher than if you are a white male. Per 2022 Alzheimer’s Disease Facts and Figures “Structural racism pervades many aspects of life that may directly or indirectly alter dementia risk.”

Maybe a coast-to-coast bike ride will help prevent Alzheimer’s Disease. That would be icing on the cake. For today, I’ll ride my bike through the snow to the library.

It is snowing. It is the day that US taxes are due. Does that have anything to do with why I am writing this today? It was in 1716 that Christopher Bullock wrote “Tis impossible to be sure of any thing but Death and Taxes” (though for the uber-wealthy, even taxes are not a sure thing).

What’s the score?

My local newspaper (the handling of which is deemed a low-risk vector for infection) interviewed a medical ethicist (whose work I know and respect) about the allocation of resources in a time of scarcity.

In other words, if there aren’t enough ventilators to go around, who gets one? How do we decide? I suddenly feel old. My mind totes up the score. I’m over 65. That’s bad. I rode my bike across the country at 65. That’s good. I have asthma. That’s bad. My asthma is well-controlled; requiring no medication in years except for once last month. That’s good. I work in health care. That’s good, for being someone who should be saved. That’s bad, for being someone who can stay home and stay well. I’m not just resting on my laurels as someone who rode across the country a couple of years ago. I rode the Horribly Hilly Hundreds last last year and am scheduled to ride the Death Ride this year. That’s good, isn’t it?

In other words, I don’t want to die yet. Most of us don’t. While I accept death as part of life and as something that will happen to me, not just everybody else, I don’t want it to be now, as part of this pandemic.

But this keeping score is scary. I don’t want to think about whether I deserve to live more than someone else. What’s the difference between a person with diabetes, coronary artery disease, and COPD; and a healthy person with no chronic diseases, but paraplegia? What about someone with quadriplegia who already uses a ventilator? Disability is not the same as chronic illness. Living with one or the other is not the same as dying.

There is a disability rights movement called Not Dead Yet. They have grappled with these questions for years. Their website contains a link to a paper from the Disability Rights and Education Fund addressing the question of rationing care. Not Dead Yet lists two primary goals: 1) opposing the legalization of assisted suicide and; 2) ensuring that withholding or withdrawal of life-support is truly voluntary.

On the other side of the assisted suicide debate are Death With Dignity and the Hemlock Society (which no longer exists. The death of the organization is chronicled by its founder here). They look at the notion of being able to choose the time and manner of our own death if we have a terminal condition. Not Dead Yet is concerned about the slippery slope of assisted suicide becoming euthanasia, and about the idea that some have more right to live than others.

While these questions are separate, they are often seen as intertwined. By “these questions”, I mean: 1) prioritizing care, 2) assisted suicide, and 3) euthanasia. Peter Ralston talks about the word “confused” as “fused with” (“con” from the Latin word for “with”, and “fuse” “to blend as if by melting together”). While I find no evidence that this is the literal root of the word, it is useful, when we are confused, to see if we are melting together things that we could tease apart and look at separately.

“I can’t think for you, you’ll have to decide…”

Some questions are easy to answer. If the disease has a choice between taking me or taking one of my kids, take me. I may have more to offer the world, but not as much as they do, with potentially 40 more years to do it in than I have.

Some questions already have rubrics. We have a scoring system in place to decide who gets a new liver when one becomes available. We may not always like the outcome, but it seems to work. In the same way, ethicists can design a rubric to decide who gets the ICU bed or the ventilator. We just don’t have the luxury of time in which to figure it out.

“Cross contamination” – what does that look like? Check out this Facebook video.

This is even better if you listen without watching.

Since I had trouble finding his name, I want it out there: J-L Cauvin.

Exile

My wife works from home. As her work is confidential and involves talking, I am exiled for the day. I was forced to go for a long bike ride. A popular route since I was on training wheels is to the town park in Paoli. Usually I refill my water bottles there. Not today. I wasn’t going to since I didn’t have a way to disinfect the handle, but that wasn’t an option.

The pump don’t work cuz the vandals took the handles.

The handle may have been removed to prevent spread of infection

Social distancing was easy. There was no one out there. I rode past a bunch of loons out on the lake. They are also adept at social distancing. Ducks hang out in groups, but loons are introverts. Only once did I see two close enough to get them in the same frame. After the ride, I went home to get the “real” camera and went back to take pictures. Loons are wily. They dive to hunt and may pop up anywhere. They tended to stay away from me when I had the camera out. If I quietly moved down the path to get closer, one would pop up in the spot I just left. If I focused on one in the distance, another would pop up right below me. After I put the camera away, I swear one popped up directly below me and looked me in the eye.

Social distancing is easy when there’s no one out there.