Not-Overwhelming Disability

At my Aunt Mary’s recent memorial service, my mother, describing her sister’s “severe, paraplegic stroke,” said that “the stroke was overwhelming, but Mary was not overwhelmed by it.”

For 16 years, between the ages of 63 and 79, Mary could not use her left arm, could only limp on her left leg, and could not speak – at least, not the way most of us do.

She could say only five words: “Yes,” “No,” “And,” and “Oh Boy.”

But oh boy, did she communicate. With intonation, inflection, facial expression, and sheer willpower, Aunt Mary asked myriad questions and expressed surprise, doubt, alarm, fear, humor, amazement, pride, compassion, excitement, gratitude, and every other conceivable message.

It didn’t happen automatically, or fast. To communicate with Mary required incredible, almost saint-like patience on the part of her husband, Peter, and other family members and friends. Every conversation started with 20 questions, and expanded from there. “Are you asking about something in this room? Something that happened today? Are you hungry? Is the person you’re talking about in our family?”

In Mary’s case, the problem was not just aphasia – the inability to speak – but apraxia: the inability to indicate what one wants. So she couldn’t point to a water glass, or move her good hand the way one might if one wanted to mime drinking. She could only say her five words. And we could only guess.

Did we all get frustrated? Sure. We also gave up sometimes. When all the “yes no and oh boy’s” in the world failed to tell us what she wanted to say, we shrugged and smiled together. Mary was a good sport about that, laughing rather than crying after her sincere and focused efforts to tell us something, or ask us something, proved fruitless.

My friend Madelyn Jennings tells me that, incredibly, her brother-in-law, also a stroke survivor, has the exact same vocabulary as my aunt did. Maybe those are the core essential communications: that’s all any of us really need:

1) Yes: affirmation

2) No: Negation

3) And: Let’s continue the conversation, and

4) “Oh Boy”: The whole range of emotion.

Many people become depressed in response to such a stroke; Mary did not. Although “the stroke was overwhelming, Mary was not overwhelmed by it.”

And therein lies Mary’s legacy. She amazed us all with her positive spirit in the face of devastating loss.

All of us face the prospect of losses, changes, and disabilities, in ourselves and our loved ones, over time.

May we all rise to the occasion, as Mary did, with humor, persistence, and grace.

Yes. Yes. Oh boy.

Mariah Burton Nelson
American Association for Physical Activity and Recreation
MNelson@aahperd.org

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One Response to “Not-Overwhelming Disability”

  1. Sarah Says:

    That is the most beautiful tribute and commentary on your Aunt Mary, as well as a wonderful support and encouragement to anyone facing the losses and disabilities
    that naturally come with aging.

    You ought to seek a wider audience for this one!


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