Talking Trash with ALS

The ancient Greeks first introduced the term “parrhesia,” meaning “free speech,” around the end of the fifth century B.C. From a literal perspective, ALS has taught me that the concept is a misnomer. Like nearly everything else, there is a price to be paid.

In the case of speech, that cost can be expressed as the effort expended in creating air pressure. This pressure is produced by the diaphragm compressing the lungs, causing vibration of the vocal cords across the larynx, resulting in sound. That sound is then modified by muscles of the vocal tract and mouth into different vowels and consonants. With the diminished core strength that ALS precipitates, coupled with inevitable bulbar impairment, that toll is an increasingly difficult one to dole out. 

This reality has been a bitter pill for me to swallow. More so than most people, I am highly energized by dialogue with others. (I am heavily extroverted, according to the Myers-Briggs type indicator.) Add to that my unusual fondness for public speaking, and the result is an individual whose mental well-being is heavily reliant on verbal discourse. Consequently, I’ve raced down sundry paths in the hope of forestalling the inevitable.

During the course of that pursuit, I’ve worked with four speech therapists and two acupuncturists. At the direction of the speech therapists, I’ve chanted “PA-TA-KA” repeatedly and rapidly enough to resemble a protracted automatic-weapon exchange. I’ve undergone numerous rounds of electrical stimulation of my throat and facial muscles. 

Under acupuncturist supervision, I’ve had countless needles dangling from my temple, jaw, chin, and neck. 

I even coerced a doctor to prescribe Nuedexta (dextromethorphan and quinidine) off-label, based on anecdotal evidence of slight speech improvements. 

Alas, none of the interventions had anything but a temporary plateauing effect, which leaves me in my current state: a man nearly without a voice. The resulting damage to my psyche is palpable, but there are practical ramifications as well.

For example, I recently had to confirm my identity over the phone as part of a credit card fraud resolution. It took 10 contentious minutes for me to accurately convey my name, date of birth, and the last four digits of my Social Security number. Only after a supervisor witnessed and approved my labored information delivery could we proceed.

There are less mission-critical tasks in which clear articulation can be beneficial. Take the interaction with a voice-activated television remote for programming selection assistance. If the request is unclear, it produces unintended retrievals. A search for “The Sting” yielded “The Shining” — both notable films with great casts, but hardly the same genre. The query “What are the times for Bollywood?” brought back “Once Upon a Time … in Hollywood.”

Thankfully, some good has come out of the erosion of my gift of gab. In a “mirror, mirror on the wall, who’s the [fill in the blank] of them all?” sort of way, my garbled messaging occasionally can be accidentally affirming. The other day, I attempted to ask my wife about our dog’s reaction to a change in his hygiene routine. My intention was, “Does Nuke like his new bath soap?” What she heard was, “You move like an athlete.” When I mentioned to my stepson on an unseasonably warm day last week “to not let the cool air out,” he thought I was complimenting him on his new haircut.

Those experiences had me tempted to run an experiment. I wonder what my audience’s reaction would be if I were to randomly utter a series of nonsensical guttural bursts, such as “Kwa zifoo quequoy muhine bobon ux pocepity jidl veadol truge.” Further, I was curious as to whether my expression might color their reception. But then I realized that version of a parlor game is played out every time that I attempt phonation.

Long ago, during summers between spring and fall semesters of college, I worked on a custodial crew. One of the full-time veterans had a dim view of the value of temporary help offered by anyone on hiatus from a higher education pursuit. He often invoked a crude colloquialism regarding my aptitude and potential for peer-level contribution. 

Looking back, I must admit that in many ways, he was correct. However, over time, and largely by virtue of experience gained via necessity, many of my erstwhile knowledge gaps have been filled. Today, I can fairly say that I “do know s**t from Shinola” — only no one would be able to decipher it.                

Oh, the humanity!

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