On Living While Dying: A Decade with ALS

By John E. Beerbower

Sometime during 2013, I became aware of my first symptoms.

I was diagnosed in March 2015. I rushed to finish the book I was writing since my retirement in March 2011. Under a perceived shortage of tim

• Language: English
• Publisher: P.J. Bear
• Release date: Jan 20, 2023
• ISBN: 9781088085660

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

On Living While Dying

On Living While Dying

On Living While Dying

A Decade with ALS

John E. Beerbower

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P.J.Bear

Copyright © 2023 by John E. Beerbower

All rights reserved. No part of this book may be reproduced in any manner whatsoever without written permission except in the case of brief quotations embodied in critical articles and reviews.

First Printing, January 2023

Contents

Dedication

Preamble

I A Journey?

II Advice for Fellow Travelers

III Chicken or What?

IV I Miss My Tooth (Sometimes)

V Some Observations from the Chair

VI Peachey Keen

VII Stayin' Alive

VIII Practical Tips

IX Another Day

X Crying

XI Back Again

XII Sunshine

XIII Living while Dying

Coda

About the Author

To my daughter Sarah and my carers Yami and Oscar

Quite a trip!

Preamble

Sometime during 2013, I became aware of my first symptoms—occasional cramping and curling of my fingers. My New York doctor took me off of statins, which can cause muscle cramps. Then, I noticed the feeling of a lump in the back of my throat, pretty low down. The specialist diagnosed acid reflux and prescribed medicine. No improvement. Then, my neck became painful. Another specialist diagnosed arthritis.

The following year, I went to doctors in England, where I was then living. The neck pain had gotten so bad that I could not ride a bike for more than a few minutes. I began to have trouble holding my head up when hiking. The new doctor dismissed arthritis, but he had no explanation. He thought I had mild asthma and prescribed an inhaler.

I found that I was not building arm strength despite regular workouts (but, I was making considerable progress on the elliptical machine). The significant amount of gardening that was needed became increasingly difficult. I underwent an increasingly invasive and unpleasant series of tests, all of which were individually uninformative but, in the aggregate, contributed to my diagnosis through the negative results.

I was diagnosed with motor neuron disease or ALS in March 2015.

I rushed to finish the book I had been writing since my retirement in March 2011. Confronting a perceived shortage of time, I decided to self-publish. The book was out by mid-2016, revised during 2017.

By early 2018, I was getting restless. I started writing again. Naturally, much of what I wrote concerned my experiences with ALS. Having learned how to publish a book, I indulged myself. I have now three more. While reading posts from sufferers of ALS, whether patients or care-givers, I concluded that there might be benefits if I made my writings on that subject more accessible. So, I gathered the relevant chapters from the three books, added this preamble and  final notes, and went to press.

For a small but very special audience.

May some find help.

I

A Journey?

Breathing,

Easy.

Easy to take for granted.

Does not require consciousness.

The primitive brain can do it,

As long as the neurons transmit

And the muscles respond.

So easy,

Breathing.

I experienced an early warning in Cambridge during the summer before my diagnosis (2014). I jumped into the deep end of the pool, into rather cool water. I surfaced and began treading water. To my shock, I found I could not breathe, not at all. Nothing. I paddled to the shallow end, where I could stand. Air. It was frightening, and inexplicable.

Now, I understand. The diaphragm would not respond, and my chest muscles were otherwise occupied keeping me afloat. Over the next seven months, I unknowingly experienced the consequences of an unresponsive diaphragm. REM sleep was impossible; if I fell into deep sleep, I stopped breathing. Thereafter, I slept with a BIPAP ventilator. During the day, I could breathe on my own.

I moved to Alexandria in 2015. And, the muscles steadily weakened. Soon, I needed breaks with the ventilator on. The breaks got longer. And longer. After a stay in the hospital, I came home pretty much tied to the machine, except to eat and drink. I have only experienced that inability to inhale again when I have had a mucus plug in my lungs. We have now learned to use the