The Eyes Have It: (Wanderings Part 2)

By John E. Beerbower

John retired from the practice of law in 2011 and, shortly thereafter, located just outside of Cambridge, England. From 2011 through 2015, he wrote his first book, Limits of Science, published in 2016. Subsequent editions, updated through mid-2022, are entitled Important Things We Don't Know. Diagnosed with ALS in 2015 an

• Language: English
• Publisher: John E Beerbower
• Release date: Nov 23, 2022
• ISBN: 9798218110062

John E. Beerbower

Born in Columbus, Ohio, and raised in Northville, Michigan, John majored in economics at Amherst College (Class of 1970), graduating summa cum laude, and received his J.D., magna cum laude, from The Harvard Law School in 1973. Following law school, he did post-graduate research at the University of Cambridge (Trinity College). In late 1974, John began a 37-year career as a commercial litigator with a major law firm in New York City. He retired from the practice of law in 2011 and, shortly thereafter, located just outside of Cambridge, England. In March 2015, however, he was diagnosed with ALS. He returned to the U.S., settling in Old Town Alexandria, Virginia. Feeling short of time, he rushed to finish in 2016 the book on science that he had been working on during his retirement. Confined to a wheelchair by 2018, he wrote his first collection of essays, entitled Wanderings of a Captive Mind. The next set, The Eyes Have It, was written entirely using his eyes.

Book preview

Preamble

Typing with all ten,

while my fingers could.

Dictating to a computer,

while my voice held.

Then, pecking away,

two fingers still worked.

Now, it is just the eyes.

So,

let the eyes have at it.

These essays are by necessity shorter than and without as many references as my prior collection. I hope that they are not too terse to be interesting. Compromises to reality had to be made.

But, it is difficult to stop.

JUST ME

Chicken or What?

Avoidance

I have already written at some length, and more or less contemporaneously, about my coping methods in the early days. These reflections are made with hindsight.

For the first five years, I semi-consciously avoided information about people with ALS. I preferred not to know anything beyond my own experience. Very early, still in England, I had visited a respiratory clinic for people with the disease. We were separated just by curtains. Arrivals were staggered, so I did not see any of the others, but I could hear. I could hear the woman on my right struggle to speak. I could hear the woman on my left describe her husband's troubles over the prior months, her troubles. As soon as I was done, I rushed out, back to my car.

At the George Washington Hospital clinic, it was easier. We had staggered arrivals and private consultation rooms. And, I always left early. I did not wait for the mental health folks to ask if I was having thoughts of suicide. The first time, they got all agitated when I responded Not today. I was joking. But, I thereafter avoided them. I stick with people who laugh at my jokes.

Over the past two years, I have taken some interest in others with this affliction.

I was shocked by stories about people who continued to travel. What was wrong with me? Were we being too cautious? I could not imagine how I would board an airplane, get down the aisle, get into my seat. I use a lift for all transfers. I sit in a power wheelchair that weighs 450 pounds. I am quite uncomfortable in any other chairs. Even recliners can not make the necessary adjustments.

However, assuming I could board directly from the gate and have my wheelchair safely transported, I would still have to be transferred by lift into the transfer chair to board and again by lift into my seat. But, the lift cannot move me sideways into the seat, only forwards and backwards. It would take two or three men to lift and carry me by hand. The same situation at the destination. I checked chartering a plane. I can not legally fly in my wheelchair, so the same issues apply, plus the additional problem of getting me up the stairs to the door. The same with dressing. I marvel at how dressed up some ALS sufferers are. Again, they may be able to stand or be much smaller. The TV crime shows stress how hard it is to dress a dead body. I can confirm that that is also the case for a live body that cannot help.

So, these more adventurous people must either still be able to stand or not be 6'3" and over 200 pounds.

Am I just more cautious than others, more of a chicken?

Then more

I have been regularly quite surprised by how resilient, stubborn and active many sufferers of ALS seem to be. It is almost puzzling. But, unlike other fatal diseases, the increasing incapacitation comes from muscle weakness, not from pain. Thus, the real challenges are emotional and psychological. Immense but surmountable.

[S]easons of suffering have a way of exposing the deepest parts of ourselves and reminding us that we’re not the people we thought we were. People in the valley have been broken open. They have been reminded that they are not just the parts of themselves that they put on display. There is another layer to them they have been neglecting, a substrate where the dark wounds, and most powerful yearnings live. Some shrivel in the face of this kind of suffering. They seem to get more afraid and more resentful. They shrink away from their inner depths in fear. Their lives become smaller and lonelier. ... But for others, this valley is the making of them. The season of suffering interrupts the superficial flow of everyday life. They see deeper into themselves and realize that down in the substrate, flowing from all the tender places, there is a fundamental ability to care, a yearning to transcend the self and care for others. ...Their life is defined by how they react to their moment of greatest adversity.

David Brooks, The Second Mountain (2019), pp.xii-xiii.

My daughter was sharing with me this morning her thoughts stimulated by a podcast from a woman dying of cancer. I must steal some of her observations. My daughter says:

We always say how lucky people are who die unexpectedly in their sleep, but maybe they miss something, something important. As the body crumbles around you, so often do parts of the emotional and psychological baggage one is carrying—jealousies, resentments, defensiveness, even some fears. In the process, the 'spirit' [my word; I suspect she would prefer to say 'something mysterious and unknowable'] starts to grow, to expand.

Yes. A chance, in the words sung by Tim McGraw, to live like you are dying. But, not with sky diving or bull riding or mountain hiking. No bucket lists. The hard way. Indeed, the song does not do justice to the potential inner experience. There is an opportunity to achieve a peace, a feeling of acceptance and a mindfulness that elude most healthy, active people.

Sometimes you experience your first taste of nobility in the way you respond to suffering. ...The right thing to do when you are in moments of suffering is to stand erect in the suffering. Wait. See what it has to teach you. Understand that your suffering is a task that, if handled correctly, with the help of others, will lead to enlargement, not diminishment.

David Brooks, The Second Mountain, pp.36, 38.

The years following my diagnosis were the truly transformative. I wrote about them in Wanderings of a Captive Mind. But, I will say I did not come out of that pit with empty hands. Life had to beat me up a bit before I was tender enough to be touched. It had to break me a bit before I could be broken open. Suffering opened up the deepest sources of the self and exposed fresh soil for new growth. David Brooks, The Second Mountain, p.230.

And, now

Of course, there are also those sufferers who just quit, who resign themselves (and their families and friends) to a quicker but joyless end. Some shrivel in the face of this kind of suffering. They seem to get more afraid and more resentful. They shrink away from their inner depths in fear. Their lives become smaller and lonelier. Id., p.xiii. There is not much to say to or about them.

I also feel badly listening to and reading the comments of those sufferers who appear to be obsessed with the prospect of a cure. One will come, maybe in time for some of these people. But, will it be just preventative? I think it will be a long time before we have a treatment that can reverse the effects. Meanwhile, these people are depriving themselves and their families of a rare opportunity.

Sad.

I Miss My Tooth, Sometimes

The inescapable human dilemma—the present versus the future. Whether to consume now at the expense of the future or to save for it. And, the related dilemma, perhaps for the more philosophically inclined, quality versus quantity.

I

About a year ago, I suddenly lost an inlay and part of the remaining tooth. It was the last molar on the top left, known to dentists as Tooth 16. A brief visit to the dentist indicated that the repair would entail pretty extensive work, which would be challenging for someone confined to a wheelchair and dependent on a ventilator to breathe. After brief deliberations, we concluded that the best course would be to have what was left of the tooth removed. The procedure should only take 10 minutes, and what would I need with the molar, anyway, if I would not be chewing much.

Everyone forgot about my impacted wisdom teeth.

In the event, the extraction required three sessions of over 10 minutes each, between which the oral surgeon disappeared (presumably to vent his frustrations). I faired pretty well, with my daughter monitoring my oxygen continuously and the dental assistant demonstrating impressive proficiency with the suction. Of course, we can not know if an inlay or crown would have been as manageable.

I am coping fine, but sometimes I miss my tooth.

II

Early on, the clinic recommended that I have a feeding tube inserted so as to have it when I needed it. They wanted to do it while my breathing was still good to minimize the risk that I would be unable to breathe on my own following the sedative. (I later discovered that they meant after the procedure, not during.) So, I did it. Not so bad, but followed by a truly miserable night in the hospital for observation. I was fine for months until the tube fell out one night. Off to the ER. Parking is easy after 1:00 am. The replacement fell out too, in the shower. I had two more before I started using it for food. By then, I could no longer breathe on my own anyway.

III

A similar, but more consequential