A Moment of Silence: Craving a ‘Re-lease’
“He wants to give the answers but his words are only
Answers to nothing …
They think this is the answer,
But their thoughts are only
Answers to nothing.”
“And the vision that was planted in my brain
Within the sound of silence.”
The deterioration of the ability to speak has left me in a reality encompassing the lyrics of both Scottish singer-songwriter Midge Ure and U.S. singer-songwriter Paul Simon. Unless a question’s response requires no elaboration beyond a nod or a shake of the head, my unintelligible words answer nothing.
My unexpressed thoughts are like a tree falling in an empty forest — no one hears them. Instead, they noisily percolate in my head, desperate for escape.
Nearly 15 months ago, I wrote about my already dismal speech. On an intellectual level, I knew without question the erosion would continue, and where it would lead. In hindsight, like Butch Cassidy and the Sundance Kid relative to Bolivia, I knew the destination but was unprepared for the emotional jolt of isolation upon arrival.
Early on in the ALS ordeal, and certainly prior to it, I reveled in the lively art of conversation. Comfortable in virtually any social setting, I would freely interact and occasionally be a primary voice within the group. I felt that my input was valued.
The retreat into the permanent cone of silence has been painful. It has stripped me of community, fellowship, and a source of self-worth. Being the most eloquent in a conversation of one is entirely unsatisfying.
The pathology of speech loss brought on by ALS is well understood. Intervention strategies abound and range in complexity and sophistication, from simple alphabet pointing boards to technology-laden eye-gaze-activated, speech-generating devices. They all serve to facilitate the delivery of basic messages. However, they also sacrifice the most human of dialogue components: spontaneous exchange, non sequitur interjection, and tonal emphasis.
They add the unintentional consequence of self-identification as to disease progression. The board whispers, “I need a little help.” The eye-gaze apparatus screams, “I can do little for myself.” Borrowing from Canadian philosopher Marshall McLuhan, “The medium is the message.” Or at least a distracting part of it.
The sad fact is, like with all things ALS, once lost, a faculty cannot be reclaimed. Acceptance doesn’t temper that sorrow. All one can do is move on and accommodate the new normal as best they can.
These days, I participate in conversations vicariously. Lately, I’ve begun to compare my immediate, unspoken remarks to ones I’d make after a brief thought collection. In doing so, I’ve found that my initial response periodically is misplaced. Looking back on my pre-ALS days, I am certain that my delight in hearing my own voice and my desire to weigh in early reduced my effectiveness as a communicator. Ironically, my silencing has yielded insights as to discourse productivity.
Purportedly an infinitesimal number of folks have experienced ALS reversals. Their tales reinforce the microscopically thin filament of hope that I cling to regarding my own condition. A small portion of each waking day — and a good bit of nocturnal time — is occupied in visualizing that event.
In a new-lease-on-life scenario, I foresee a journey to personally thank all those who have propped me up. I will volunteer my service to anyone in need. I will actively witness my faith. I will sing the songs that I am so fond of quoting from. That, and more, will be conveyed by a now unrecognizable voice — my own.
That fantasy contributes to my “keep on keepin’ on.” As does the never failing, fall-back term of any lease I enter into, past, present, or future. It is particularly apt for someone without a voice. My act-of-God clause is fashioned along Stevie Wonder’s advice: “When you feel your life’s too hard/ Just go have a talk with God.”
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