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
Still remains
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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Comments
Ana Arroyo
Thank you so much for your articles. They are beautiful. Your mind is intact and awesome. I am 44 and almost in my second year living with this horrible disease. As you say I am aware of all the loss I will have to face but I am not ready for it. Still praying for a miracle!
Rick Jobus
Ana, We are praying together. We're stronger that way.
David Crellin
I guess I'm fortunate 27 months after first signs of weakness that I can still sing & talk. I can just about play one of my many guitars with my left hand. The need to listen more than talk is well put. I need to take heed.
I frequently recall the words of Moments by Bryn Haworth, sung by Sandy Denny. I sang & played with Bryn years ago. 'These are the moments that we love so well, Precious moments caught within a spell. All too soon our lives they fade away, These are the moments that we wish would stay. ...If I had my life to live again I would choose to be with you my friend. Time moves slowly and it goes so fast, and who knows how long our days will last.
So cherish deep within you the love you get today, and let the moment linger, for tomorrow steals that away, yes tomorrow steals that away.
These are the memories,
that we made so well,
Lives like stories,
that we long to tell,
When we're old,
with not too much to say,
We'll have the memories,
that we made today
It made me weep before ALS, and now I weep at soppy films. So I can't sing it without crying. It was written in key of E, but works in D too. Look it up.
David
Rick Jobus
David, that is beautifully moving.
Bob Cunningham
Wonderful words. We are quite the club. I pray my faith carries me thru to the end of this journey. I pray in Heaven, all of us that have lived with this disease will gather together and sing for our Lord,
Rick Jobus
AMEN
Bobbie Dreher
beautiful written thank you . I now go in a virtual world and spend my days. if my hands and arms fail me first and i can still talk then i will voice my type to communicate where now i type. if both fail me i will go to eye glaze. i have friends , can shop like i use to help others , is called Second life and they have a special port to enter in second life with people with disabilities. they have healing sims i go to to. Each day i get up take care of myself and enter inter into my nirvana with my avatar. who is now a part of me. i am 5 years. and take thc and cbd and sleep with by pap. i have a fan on me all day while i play on line. But soon my Avatar will have to put a follow hud on and follow my friends where she to will soon loose her freedom but can still dance. . by standing on a circle and will dance for her here. hugs.
Lisa Smith
I was a counselor for 38 years, spending much of that working with victims of trauma. I finally decided to retire in December at 64 1/2. Shortly therafter I started having swallowing problems and my speech changed some. my first diagnosis was PPA, but I went to the best neurologist around who unfortunately had to tell me I have Bulbar onset ALS. My speech is slurring noticeably now; it cracks at times; the voice I used to have to sing in choir has vanished and I have some swallowing issues. I am waiting on pulmonary assessment. Your article was very informative. I am hoping that the medication will slow all this down. Are you doing infusions as well as the Riluzole? Did speech therapy help any? I am in constant conversation with God, as I really hoped to do some type of other volunteer work after retiring. For now I need to focus on maintaining what I can, and having full relationships with family and friends. I would appreciate any advice you have to give. So far I can ambulate (although I lose my balance sometimes), drive, and write.
Rick Jobus
Speech therapy helped me, particularly vitalstim. I took nuedexta, off-label, after reading that it helped a few people with their speech. I also tried acupuncture for the same reason. It may have been a placebo effect, but both seemed to be a bit beneficial. And, of course I pray, as now I will for you.
Susana Rave
Rick thank you for your article. Your writing is so eloquent and great to read. Continue to speak through your posts, we hear you loud and clear. We all need to stay strong and live as best as possible. God bless.
Len Jax
Well said Rick and so, so true! The loss of speech has been the most profound digression for me also. I have contemplated the meaning of this event and grieve the loss often as all of us do in dealing the many losses associated with ALS. One thing I have learned is that each of my words now is more precious. As Paul Simons song says,
"And the vision that was planted in my brain
Still remains
Within the sound of silence."
I am silenced, but the vision planted in my brain still remains, which I am forever thankful for. I still have plenty to ponder.
Simon goes on to say,
"Ten Thousand people, maybe more
People talking without speaking
People hearing without listening".
Funny thing is I now realize, I can still speak to others without talking and have become a more thoughtful, reflective listener! My words are more measured now which is good!
Rereading your post above, you have become a great written communicator in a verbal world. You have grown through your loss which is what living is all about! Kudos to you! I'd count that as a win!
Anne Iles
Loved your words. I have lost both my brothers to ALS and I’m a carrier. So far I haven’t had any symptoms. My younger brother had the bulbar form. It was so hard and frustrating for him to communicate and unfortunately around the same time he also lost all hearing. Thank you again for your wonderful message. Anne