Words, don’t fail me now

Words fail me.

Or should I say: I fail words.

You know that feeling you get when you lean back on two legs of a four-legged chair and suddenly you realize you’ve gone too far? You know that feeling? A split second of feeling totally out of control?

I feel like that all the time.

That joke reformulated by me from deadpan comedian Steven Wright is essentially about words.

There is not  a word for that feeling.

Sure you can say ‘out of control’ or you can say ‘scared’ but none of that matches or encompasses the specific instance of leaning back in a chair and nearly losing it. There’s no one word for that.  In fact, it takes several sentences to explain.

My own word for that? Yikes!

But that doesn’t exactly capture everything. And that’s also the word that describes the feeling you have as the roller coaster begins its descent.

There is a word (or phrase) for a feeling that people report to have that they feel like they have been in a place they had never been or are in a situation that they feel  like they have already lived through.

English speakers  appropriated  the word from France: deja vu. 

(Technically that’s two words but those two words, six letters total, go together to represent a complex idea. See how long it took me to explain it.)

Words are symbols formed by assembling letters. What are they symbolic of? Thoughts?  Are we not thinking in words, already? Take away the words, what do we have?

A frustrated person.

Catherine told me the story of a 100-plus year old nursing home  resident, barely 5-feet-tall, who attacked the staff. I mean she hit and kicked the staff. She had a urinary tract infection and that hurt. But she  could not communicate that. Getting physical at a century old was all she had to fall back on. The need to communicate is a strong one. One wonders if our world leaders could better communicate, we might avoid the violence that stains humanity.

Someone asked my daughter what her biggest fear was. And she couldn’t think right away what it was,  but eventually hit on one that is  a big one for many: Fear of failure.

That  used to be my biggest fear, and I think a lot of people live with that.

My greatest fear now? It’s  losing my words.

Unfortunately with Lewy body dementia that’s a key symptom. I already find myself struggling to come up with some words. This occurs mostly during speaking and not as much when I write.

In conversation with my colleagues and friends it is subtle but I realize it is there: my struggle for words. It’s like in my brain I am searching a cavernous warehouse for one little item, one little word.

It’s  an Amazon.com warehouse only when they push a button to  have a robot/machine fetch the item from among a million things, the robot sighs. Like the robot  in Lost in Space with its plug pulled. I’m left rummaging through this warehouse. I find a ladder, go up to the top shelf and there it is. My word.

I’ve done this before, it’s deja vu.

Actually, my word is ‘restorative.’

“The ocean’s waters are really …., um, really …) I start this sentence in a conversation about the beach, but I can’t finish because I can’t think of the word. Amazon warehouse thing kicks in. I’m on my ladder looking. Why is it always on the top shelf, I mumble to myself.

Cold? someone offers, you mean the ocean is cold?

RESTORATIVE, I finally answer a little too loudly. Everyone sighs with relief.

I have an aunt who has brain damage from unknown origin. Could have been a high fever as a young child, we don’t  know. But she’s been this way as long as anyone remembers and currently lives in a group home.

She can  talk but does so only if you ask her questions and typically they must be yes or no questions. She’s now in her 70s but seems like a child. She, now and again, will  have a little crying jag, clearly out of frustration that she can’t communicate. She’s got  so much to say, she just can’t find the words.

Painting by Jean Gill.

She’s  a voracious painter. She has won awards. Here’s one of her paintings.

You may remember my stories about Porter Heatherly the little boy who died at 4 of a rare genetic disease. He never uttered a word in his short life but he was loved by many and spurred fund raising and research to find a cure for GM1.

And you may remember me writing about my former boss, now in a memory care unit. I hadn’t seen him in decades, he recognized me and wanted to talk newspapers. But what came out was word salad. He couldn’t string the right words together. And he knew it. And his eyes showed the frustration.

I don’t want that.

But with me, realistically, it will happen. Hopefully some years from  now. But some cases I have read about say it can escalate quickly.

So now, while I can, I want to express myself as I have done all my life through the written word. To those who have cared for me, family, friends, colleagues, parents, cousins. Those I never met or haven’t seen in forever who have offered prayers, contributed to my bucket list trip, my Mike Madness tournament. To all those who have put up with my sometimes morbid sense of humor (to Hannah, Emily, Claire and Catherine.)

I give you these three words:

I love you.

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