‘Behind Blue Eyes’: Awakening the Lively Art of Conversation

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by Rick Jobus |

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“I been one poor correspondent, and I been too, too hard to find

But it doesn’t mean you ain’t been on my mind.”

In retrospect, I fear that much of my life has resembled that stanza from the band America’s second Billboard No. 1 hit, “Sister Golden Hair.” Too often, the contact and currency that I maintain with heyday people from bygone days has been spotty, tardy, or absent.

Life can be characterized as a series of chronological chapters, framed by school, place of employment, affiliations, or geography. In each successive one, I’ve developed fast friendships, forged strong bonds, and enjoyed special kinships. Yet, whether due to the grind of life, short attention span, or lethargy, many of my “best friends forever” unions have failed to live up to that eternal marquee billing.

Surprisingly, the prolonged ALS section of my life has reversed that phenomenon. In addition to the scores of new folks within my social sphere, the ALS epoch has had a galvanizing effect on the overall health of my preexisting relationship network. Active friendships have tightened. Dormant ones have been rekindled. Long-feared lost ties have been reclaimed. This renewal has been a gift. However, as ALS giveth, ALS also taketh away.

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ALS wages a scorched-earth war of advancement. It only leaves destruction in its wake. It systematically has incinerated my ability to walk, rise, stand, bathe, and shave. ALS has rendered my lung capacity a whisper of what it once was. It has broken my speech beyond repair. Now, via range-of-motion loss, fine motor skill deterioration, and muscle atrophy, my wherewithal to merely strike a keyboard is being threatened.

In light of the renaissance of my relationship world, my loss of voice, and the portending loss of pen, are particularly galling. In the information age, I am personally approaching a talk- and textless state of being. Without words, either uttered or written, my reality will be less than one of a “poor correspondent.” I’ll be a communication black hole.

Keeping my eye on speech-generating devices

As is often the case, technology offers an assist. My transfer lift enables me to make as-needed trips to the toilet and shower. My power wheelchair allows me to venture outside the house. In a like manner, there are devices that will again make possible the lively art of conversation.

I have been aware of speech-generating devices for many years. I have experimented with their use. However, my paradigm of tenaciously clinging to the last vestige of bodily function — prior to gizmo reliance — has kept my usage on hold. 

That “use or lose it” mentality has produced mixed results. On one hand, it serves to boost my residual capacities. On the other, it means sometimes postponing the inevitable beyond opportune timing. Sadly, with respect to speech, I continued to try to use it past the point that it was lost. It was in that context that a speech-language pathologist demonstrated my reconnection options.

Among the most robust, feature-rich alternatives are the devices that utilize eye-gaze control technology. This was our starting point. The unit that most caught my eye (pun intended) uses infrared cameras mounted on a screen, which pick up the movement of the cornea. This allows someone to stare at a letter or a symbol and activate it. Then, words can be spelled, strung together as phrases, and expressed by a computer-generated voice.

But talking out loud is only half of my battle. I worry that my declining ability to type will soon culminate in zero remote communication. Plus, I am fond of writing this column.

To assuage that concern, a demonstration was given showing nonverbal interaction features. I was able to compose and send emails, use social media, and productively manipulate a word processing tool — all with my eyes. Environmental controls — lights, temperature, door openings and closures — and a cellphone interface are part of the package.

The promise of spontaneous verbal exchange, unfettered writing, and greater independent living are like manna from heaven. Of course, technological wizardry is never free. Thanks to the Steve Gleason Enduring Voices Act of 2017, speech-generating devices are covered under Medicare as durable medical equipment. There are philanthropic organizations, such as Team Gleason itself, that may help with the 20% Medicare copayment.

The ball is moving. More dominoes — paperwork, approvals, assimilation — need to properly fall. But relief may literally be in sight (pun again intended). 

In 1962, an iconic slogan for the Yellow Pages was created: “Let your fingers do the walking.” The visual of walking fingers graced every telephone book in America. As if that were not enough, it later became the title of a song by the Danish rock band Sort Sol

Extrapolating on that bit of advertising brilliance, I eagerly await attempting to “let my eyes do the talking.”

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Note: ALS News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of ALS News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to ALS.

Comments

Chriz Lyggate avatar

Chriz Lyggate

Great piece, Rick. You have an amazing voice and I'm glad you can share it with us. Eyegaze control is an astonishing technology that has the potential to help a lot of folks with ALS. It certainly helped my brother. Thank god it's now covered by Medicaid. I hope you'll write more about your experiences with it.

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