April 3, 2024

Resilience and Ingenuity

This morning I made William laugh using eyegaze.  This is very good news.Photo of Will Plews-Ogan on his computer

My ability to be understood these days, even by those closest to me, is dicey at best. The weakened muscles of my face and mouth limit comprehensible articulation, and weakened breathing limits volume and the length of a phrase. Often we end up playing charades, which as you might imagine, severely hampers my opportunity to deliver even the pithiest punch line.

Yet, this morning William laughed out loud, followed by a warm, lingering embrace. This is the fruit of ALS perseverance. For Christians, this is an Easter manifestation of the risen Christ.

Blooming azalea bushes in spring, near the Easter holiday.

Truthfully, imagining life without speech has been a bleak and confusing reality. Along the way I have learned that most of what I think I need to add to any discussion borders on superfluous. If I remain quiet , the conversation flows on just fine. But there are times I absolutely need to be understood. I might need help urgently for suctioning, for the bathroom, or to be repositioned due to spasms and pain. And let’s be real, on occasion I do have something worth saying.

The emptiness of life without speaking is a potentially lonely place to be.

Imagine too how frightening and lonely life could become for those who love and care for me.

Alas, the people closest to me have not let that happen. We can laugh until we cry over miscommunication. Ingeniously, they have started saying blink your right eye if we’re good, and blink both eyes if it’s urgent. Most of all I have been offered unending kindness in the form of quiet patience as I struggle to be understood.

My Tobii eyegaze is equipped with an elaborate text-to-voice program. I can create and store phrases which are easily cataloged for future use. I have banked my voice so it really does sound like me speaking.  You could ask:  what is the big deal here? This is all splendid.  Get on with it. 

Let’s be clear about something I have learned from living with ALS. “Getting on with it” necessarily means accepting and generating a new narrative. 

Here and now the narrative includes a new way to communicate. I see a deeper reality here too. The loss of my speaking voice, together with the discovery of new ways to communicate, serves as a profound and compelling reminder that new life is possible even when faced with a bleak and lonely path.

Jim's grand baby during a visit in April.

Happy Rowan during a recent visit.

6 Comments

  1. Andrea Goodman

    Rowan is getting so big! You are such a force, Jim. ❤️ New life IS possible and I’m in awe of all you accomplish.

  2. Marisa

    How I miss your pithy punch lines. Cannot wait to check out all the banked phrases with your new tools – and am so glad eyegaze is working for you. Love you all so much!

  3. Teresa Haase

    Sending gratitude, light and love your way, Jim. Holding you in heart and mind always. 🧡

  4. Smith

    What a beautiful narrative, Jim.
    While I want to say how much we too miss your pithy fun, I am so happy you are being heard. Your voice is, as always, also profound.

  5. David Taylor

    Love this blog – have loved them all!

    Love hearing about laughter and the hugs, the eye blinks and especially this comment:

    “And let’s be real, on occasion I do have something worth saying.”

    You have ALWAYS had something worth saying – let’s be really real!! That has been one of your many, many wonderful trademarks – keep those thoughts coming, please!

    Lots of love!

  6. Milica Govich

    Love you, Jim. I can still hear your voice loud and clear. xoxo

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