Battling ALS at the “Monster’s Ball”

I thought a great deal about Wilde's philosophical novel well before I was officially diagnosed with amyotrophic lateral sclerosis (ALS) because I had arisen on several mornings with the odd sensation that I had somehow aged faster than usual during the night.


CHARLOTTE, NC, January 5, 2017 – Oscar Wilde published his only novel in the July 1890 issue of “Lippincott’s Monthly Magazine.” Unbeknownst to Wilde, the manuscript was edited prior to publication, and the controversy over “The Picture of Dorian Gray” was not resolved until the following year when the novel was published in its entirety in book form.

The story was later made into a film starring George Sanders in 1945 using primarily black and white footage with four inserts added that were in color.

I thought a great deal about Wilde’s philosophical novel well before I was officially diagnosed with amyotrophic lateral sclerosis (ALS) because I had arisen on several mornings with the odd sensation that I had somehow aged faster than usual during the night.

The art of living with ALS: Socks and other new challenges

As youngsters, we long for certain birthdays. Sixteen for most of us means getting our driver’s license. When we turn 18, we earn the right to vote and we toast 21 because we can legally drink alcohol. But never do we hear someone of such youthful stature say, “Wow, do I feel a year older, now.”

Thanks to improved healthcare, better nutrition, and more exercise, our life expectancy has increased dramatically. So much so that there is even an expression that goes something like “seventy is the new fifty.”

Remember when we were younger how “old” our grandparents looked, even when they were only 50?

For whatever reason, I somehow felt myself aging with each passing day. Perhaps it was the inability to raise my arms one day or to comb my hair the next or to shave without cutting myself, but there was something that was noticeably different.

In movie terms, I felt as though I was slowly fading to black knowing full well that when the screen went dark it would mean everything was finished. In short, I had the odd feeling that I was aging in a similar manner as Dorian Gray in his portrait.

However, once the ALS was confirmed, I began imagining myself as a different movie character. Margaret Hamilton was a former school teacher, but most people recognize her as the horrible green-faced Wicked Witch of the West in the 1939 classic film “The Wizard of Oz.” Hamilton was so good in the role that she was ranked as the 4th best movie villain of all time by the American Film Institute in 2003.

Oz lovers will never forget her classic line as she went to her death saying, “I’m melting. I’m melting.”

Therein lies my personal sense of connection, for the slow daily progression of losing my dexterity makes often feel that I, too, am “melting.”

The ironies of ALS, baseball, Lou Gherig and me

Perhaps a better word is one of “morphing” rather than melting, for I have no preconceived idea of when the deterioration will stop, if it will stop or how it will stop, if it does. All I think I know is that the lights will still be on but it will appear that nobody is home.

In that sense, there are other well-known movie and/or literary creatures I sometimes picture myself becoming. Dr. Jekyll’s alter ego, Mr. Hyde, comes to mind on some occasions. Though I have yet to arrive at a desire to do evil deeds or commit murder, Robert Louis Stevenson’s 1886 novella “The Strange Case of Dr. Jekyll and Mr. Hyde” does create images at times that remind me I was once a complete person before my brain told the rest of my body that I am broken.

Or how about Fritz? You probably recognize him better as the stock movie character named “Igor” who frequently pops up in Gothic films. Fritz was Dr. Frankenstein’s hunchbacked assistant in the 1931 film version of “Frankenstein.”

Mary Shelley, wife of poet Percy Bysshe Shelley, published “Frankenstein” or “The Modern Prometheus” in 1818 when she was a teenager. Though neither Igor nor Fritz appeared in the novel, the noticeable “shuffling” of my feet as I walk often brings Igor’s image to mind.

Vincent Price and Jeff Goldblum occasionally pop into my imagination when I consider myself evolving into “The Fly.” Here again, it is merely that mid-transitional phase when I realize I am only part of person that such ideas emerge.

“The Fly”, made in 1958 and again in 1986 was a science fiction story about teleporting human beings from one place to another.

The “bug in the ointment,” so to speak, occurs when a fly gets into the chamber with the scientist just before he throws the switch and, in the process, the scientist, and the insect partially assume characteristics of the each other when the teleportation is over.

For me, the similarity lies purely in the concept of being two people living in the same body. There is absolutely no desire to rub my legs together or eat garbage.

Preparing for the journey of amyotrophic lateral sclerosis

But it was only as I was attempting to eat dinner one night that I realized my previous incarnations were inaccurate. I have now come to the realization that the inability to stretch my arms outward or to lift them properly is not a human quality but that of a prehistoric animal.

Just like the “Thunder Lizard” with those tiny arms and massive body, I am actually becoming Tyrannosaurus Rex! Now I understand what made T-Rex so angry.

And so I now go to sleep each night wondering what new and exotic character will greet me in the morning.


Contact Bob at Google+

Bob Taylor has been traveling the world for more than 30 years as a writer and award winning television producer focusing on international events, people and cultures around the globe.

Taylor is founder of The Magellan Travel Club (

Read more of What in the World and Bob Taylor at Communities Digital News

Follow Bob on Twitter @MrPeabod

Click here for reuse options!
Copyright 2017 Communities Digital News

• The views expressed in this article are those of the author and do not necessarily represent the views of the editors or management of Communities Digital News.

This article is the copyrighted property of the writer and Communities Digital News, LLC. Written permission must be obtained before reprint in online or print media. REPRINTING CONTENT WITHOUT PERMISSION AND/OR PAYMENT IS THEFT AND PUNISHABLE BY LAW.

Correspondingly, Communities Digital News, LLC uses its best efforts to operate in accordance with the Fair Use Doctrine under US Copyright Law and always tries to provide proper attribution. If you have reason to believe that any written material or image has been innocently infringed, please bring it to the immediate attention of CDN via the e-mail address or phone number listed on the Contact page so that it can be resolved expeditiously.