Wednesday, February 27, 2013

ALS gives me patience

Nell Hardy writes a montly blog about living with ALS.  This article is about using her communication device to engage in conversation with her friends and family.  Very impactful.


A group of women met at my house two weekends ago for a silent retreat. They surrendered commitments, cell phones and schedules for six hours. Gingerly, each woman dipped a toe or fingertip in the quiet before immersing themselves in the silence.

I patiently waited for them. I've been speechless for more than a year after amyotrophic lateral sclerosis put me in the ring with pneumonia. I lost and a tracheotomy was performed so I could breathe.

Actually I won because I didn't die, but who's counting?

In the months before the tracheotomy, my words were so garbled that only my sons and a few aides could understand me.

As the muscles in my tongue and throat atrophied, my speech became unintelligible. It wasn't much of a stretch to go from struggling syllables to silence. Sometimes it was even more difficult to no longer laugh or sing.

I tried different speaking valves to coax words out but none worked. Difficulty swallowing, inability to form words and stiffening limbs seemed a trio destined to take me down.

But I'm the runt of the litter. I'm plucky and come from a long line of strong Irish women. I'm determined to savor what my life offers.

Enter secret weapon, stage left. A portable computer called a Dynavox is my main ally in coping with ALS. Attached to my wheelchair, the computer has a screen with letters I choose by blinking at them. Then I select "speak" and words roll forth, framed by a voice of my choosing. Before my voice began changing because of the illness, I spent hours banking my words.

By saying nonsensical phrases such as "a blueberry perched on my pot of ink," the program tried to capture the frills and thrills of a human voice. For me, it fell flat. My words sounded like a different language uttered loudly in a tin can.

A conversation using the Dynavox is, well, different. It simply takes time. On a good day I can eye-type eight words per minute. That's when all variables settle nicely and the Dynavox stars align. Conversing with me involves silence and long pauses. I love the golden layers that quiet spreads between words and phrases.

Speaking through a device presents unique difficulties in our hasty, quick world. I travel at 10 mph in an 80-mph world. Often I finish a sentence only to find the conversation is three subjects ahead.

Others do not like silence; it doesn't fit in our hurried, worried world of instant answers. One friend is a coin jingler. The longer he waits, the deeper his hand plunges into and sifts through a pocketful of change. Others clear their throats, tap toes or actually sidle behind me to read what I type.

Sitting comfortably in silence wasn't always this easy. Before ALS I was a stuffer; I crammed soccer games, child care, horse shows, friendships and self-help into my life.

I wished for a new car, another horse, low-maintenance sons. Rarely did I stop for fear my life would catch up.

But sometimes it takes a crisis to evoke change.

Because of ALS I have downsized, condensed and decluttered my life. I'm finally patient in an impatient world.

NELL HARDY, of Fairview, writes monthly about her battle with ALS, also known as Lou Gehrig's disease (

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