Lost Words

That first year we found out about Bo’s condition,  I was almost frantic.  I can’t explain my reaction, but I started to have anxiety attacks, sometimes just walking around the block taking deep breaths, trying to make the stone in my chest go away.  When he went somewhere,  I paced the house, and  if he didn’t come home when I thought he should, I was sure he was lost and  actually expected the police to come to the door.   If the phone rang, I held my breath.  I could barely hold myself together …

You see,  I was sure the condition would progress rapidly, stealing him away from me in great chunks of loss.

Now it is four years later and I have learned that he is indeed being stolen away from me, but insidiously,  in small steps, disappearing in so many ways …. words, ideas,  short– and now long-term- memories.  I know that he  lives in the moment, yet sometimes I can almost forget because we don’t have the kind of conversations that reveal his changes.  There is a repetitiveness to our lives, the everyday events, the same questions and interchanges: meals, cats, lawn, my mother …. the things he knows.  His reality.

But now I see a new loss creeping up on us:  the loss of language. He’s losing words and thought step-by-step in reverse.

I found this note on the kitchen table last week:

“C.B.S. farmacy called”  My heart nearly broke.  I knew this would come one day but I hoped not so soon.

Yesterday there was another note, this one barely decipherable:

“Eyer is bussing”  (my ear is buzzing) and then  “Tuesto Gas  Tues  Aug 30” (which I couldn’t interpret and he had no idea what it meant.)

Sometimes when he can’t find words, he gestures or just stops talking. What kind of plant (pie) do you have?  Where is the (arm raised and pointing)  ????  (deodorant)

“Where is my machine?”  He stood in the front hall making the motions of pushing a vacuum cleaner. “The vacuum?”  I asked. “Yeah.”

It reminds me of the concept of schemata and reading comprehension that I teach in my classes.  Our brains are like a filing cabinet, with each piece of new information filtered into its related folder.  As Bo reaches for a lost word,  he goes into the file folder and retrieves a related word.  Sometimes the folder can’t be accessed and there’s silence as he searches; then I help to  fill in the blank.   This is happening more.  This afternoon, for example, he asked me if I wanted the “black box”  (my briefcase) put into my car.  Later he asked me if I had a “brush” (as he made the motions of putting up an umbrella.)

I cannot imagine the frustration he must feel. We were walking around the block the other day when I commented on the beauty of the huge, old trees.  “Have you looked… is it better than …”  he tried to ask, and as I helped him with questions, I found out he was trying to ask me if our town is a really good one compared to others.   We’ve lived here since 1976 and he always knew the answer.

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10 Responses to Lost Words

  1. Dean says:

    The notes remind of trying to read the children’s writing from when they were first learning to write…

  2. Karen Phillips says:

    Nancy,
    Your description(s) of Boris’ decline make me realize more and more how dramatically everyday life for you is changing.
    I’m always a phone call away.
    Luv ya,
    Karen

  3. Annamarie says:

    Nancy, I’m so sorry for both you, and Boris. We never know what lies ahead for us. I’m here for you, too. Thank you for sharing your talents as a writer, and this unbelievable journey with those of us that love you. Annamarie

    • Carole says:

      It is hard to understand why people are taken from us in so many different ways. Just keep the faith, have patience, and find comfort in knowing Bo and you are a special part of a well-lived life! I send my love to both of you and your Mom.

  4. Dear Nancy,
    See how important and essential you are to Bo’ s life !! I pray God and His Holly Spirit may comfort you in very tiny need and fullfill you heart with his everlasting love and grace . God is with you both.
    God bless you !

  5. Pat Stokes says:

    Dear Nancy,
    I know it’s trite to say I know what you’re going through, since each person’s experience is their own. Just know that my heart goes out to you and it aches for you each time I read your blog.
    The one thing I know God helps us with, is strength. I pray this for you. lovepat

  6. Vittoria Natale says:

    Dear Nancy, When reading this blog about you and Boris it brought tears to my eyes. My heart goes out to you both. Life sometimes has it’s twists and turns and trials and it’s hard to understand why. May God be with you both and may you find strength to manage everyday through prayer. God Bless
    Vittoria

  7. Kathe Shakespeare says:

    Dear Nancy,
    Thank you so much for sharing your days with me . Your eloquent descriptive words of Bo’s difficult decline touch my heart in a very special way.
    with fondest wishes Nancy,

    Kathe

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