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Thursday, January 22, 2004

Trapped In Your Own Mind

Last night I watched the PBS special The Forgetting: A Portrait of Alzheimer’s and it was one of the most heartrending and poignant documentaries I’ve ever seen; I was moved to tears several times. Please watch it if you get a chance.

*****

Day into evening, when your mind is racing and you’re feeling the weight of your responsibilities overwhelm you like a cloak you can’t pull off, imagine that it’s all gone. The good and the bad. Disappeared from your consciousness.

In those private, quiet times that we secretly steal, imagine yourself trying to retrieve the memory of your first real kiss or your child’s first day of school, but in their place you find an empty space. A void not just of the memory, but even the components. What does the warm, velvety kiss of first love feel like? Who was my first love? Who am I?

Maybe you will see it coming. Maybe you know that things are starting to go from gray to black. Maybe it scares you, even now. Will there be relief in not knowing or will there only be frustration in the searching? Will you be scared moment to moment until you draw your last breath?

Sometimes, I write to make up a world of my choosing with people that jump into my imagination, fully-formed and real only to me until they’ve hit the page. There are bits of me and parts of others and fractions of events that I’ve lived. It’s more exhilarating than I can describe.

More often, however, I write to remember the things I’ve experienced. Writing releases the moment, clarifying it in my mind. It makes the emotions even stronger, somehow. Sharing it with others, then, makes it more real. Common experiences and shared thoughts make the bonds tighter.

What if all of this, my imagination, my experiences, my history, my friendships, my love, was misplaced and I spent the rest of my life trying to find it? Is it better to not know and not be capable of mourning its loss?

What if I read this all someday and don’t know who I am?

I can’t imagine.

*****

My Great Aunt Kitty died earlier this month, but we lost her many years ago.

I rarely saw her much in the last decade, but when she arrived at our family reunion a few years ago, I was thrilled to see her still beautiful face. My mom leaned over and whispered to me, “She’s had the Alzheimer’s for years now. She won’t remember you”.

*
Aunt Kitty and Uncle Marty radiated life. Genuine smiles and eyes that told you they were listening and hearts with an endless capacity. They lived in a small house in Illinois, comfortable with each other and content in their hobbies. They were both creative and vibrant, with stories that made me laugh and sit in rapt attention.

Before I would leave after any visit with them, Aunt Kitty would hold me close and say, “I think your uncle has a present for you…” and I would turn to him expectantly, unable to ask for anything, stuck in my shyness.

He would walk with me out to his old, beat-up Ford and open the trunk and pull out a beautifully crafted, simple wooden toy that he’d made in his free time. It was probably one of dozens, but it was clear that this one was mine. He’d bend down and show me how the toy worked and take time with me and soak in my happiness.

I’d always look back to the house and there was Aunt Kitty, standing on the doorstep, watching the whole scene. She’d wave and smile and blow kisses and mouth the words from afar, “Love you.”
*

As I approached Aunt Kitty, sitting at the kitchen table with family all around, I swear I caught a look of recognition. She was still smiling that same pleasant, inviting smile.

She looked up at me as I touched her shoulder and said, “Hello Aunt Kitty, how’re you doing?”

“Oh, well, hello there! I’m doing fine, how’re you?”

“I’m doing good. It’s been a long time,” I said, looking into the diamond-clear blue eyes.

“Yes it has. Yes it has. Too long.”

“I’ve missed you. I love you Aunt Kitty.”

“Ohhh, sweetie. I love you too.”

I grabbed her hands, folded in her lap.

“Which one are you, honey?” she asked.

I looked long at her, trying to find the spark in her eyes again.

It wasn’t there.

“I’m C. I love you, Aunt Kitty. I love you. I love you,” I whispered, hoping I could break through.

“Love you,” she mouthed.

Aunt Kitty long ago forgot her sweet husband and the simple wooden toys and how I loved her in a way that I can’t explain.

She forgot me.

She forgot herself.

I can think of nothing worse.

Thursday, January 22, 2004 | Permalink

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Tracked on January 22, 2004 03:16 PM

Comments

in case you weren't sure, it was worth it.

this one goes on the words of wisdom list.

Posted by: julia | January 22, 2004 01:53 PM

I'm very sorry to hear about your Aunt Kitty. I watched my grandmother suffer through the stages of Alzheimer's for almost 7 years. It was extremely heart-wrenching to witness her slipping away. I will never forget the first time she looked right through me with her glazed eyes. Unfortunately, it was the same moment that she didn't recognize my grandfather, her husband of 60 years.

To get a better understanding of the disease, I highly recommend reading Living in the Labyrinth by Diana Friel McGown. Diana wrote the book as she progressed through the stages of Alzheimer's.

Posted by: JW | January 22, 2004 02:36 PM

Thank you for telling your story. I lost my mother two years ago after a ten-year run with Alzheimer's. I cried when reading this, For Aunt Kitty, for my mom, and for all who live through it.

Posted by: susan | January 22, 2004 03:13 PM

Not the first time you've brought tears to my eyes through your writing, won't be the last.

My best friend's grandma had this disease. I remember watching her so that my friend could have an evening off. It blew my mind every time. The mind is so complex. She would have moments where she was violent and moments where she was calm. I just don't have the words of understanding to share my sympathy.

Posted by: Sarah | January 22, 2004 04:43 PM

A very close family friend was diagnosed with early stages last year. He watches himself fall, we watch him fall, and every encounter is like standing on a tightrope. He still knows who I am, but what he means to say to me comes out wrong, and you just try to answer in a way that won't tell him you know it was wrong. It seems like it might even be easier to be fine one day, and wake up with Alzheimers the next. Thanks for that piece.

Posted by: EV | January 22, 2004 04:56 PM

She might have looked right through you, and didn't recognise you, but she must have felt your love, and she was lucky to have people to give her that. She's still around somewhere, and everytime you think of her she'll be right next to you..and now she definately knows who you are.

Posted by: w | January 22, 2004 05:13 PM

Long time reader, first time commenter....

My sympathies for your loss. My grandmother died in September, but like your Aunt Kitty, she left us years earlier, in little bits and pieces. It's a frightening disease, and I wouldn't wish it on anyone.

Posted by: stennie | January 22, 2004 05:25 PM

sympathies, c.

Posted by: bob | January 22, 2004 10:12 PM

You write the poignant as well as you write the humorous. I'm all teary. Thanks, CW.

Posted by: Alicia | January 22, 2004 11:23 PM

Wonderfully crafted. Thanks for sharing such a touching story.

Posted by: Kimber | January 23, 2004 07:40 AM

I can't wait for you to come home.

Posted by: maggs | January 23, 2004 09:18 AM

I watched that show and felt the same way. I cried several times. My Mom has early on-set Alzheimers and is in the severe stage. I pray everyday that it will be over for her soon. Thanks for your thoughts...

Posted by: Trish | January 23, 2004 10:20 AM

truly the worst way to go. my thoughts are with you, and everyone else touched by this horrible disease.

Posted by: bryan | January 23, 2004 10:34 AM

I've been there with my sweet, gruff, wonderful, smart, dry-humored grandfather, whose body died Christmas Eve 2000, but who was lost to us years before that. It hurts when they die, but it's agonizing to see that person you love so much slip away and leave an empty shell behind that lingers.

Posted by: Laura | January 23, 2004 10:58 AM

CW, you are such a softie, under your leather-tough exterior. *squish*

Posted by: styro | January 23, 2004 01:45 PM

my grandmother is currently in that same shadowy world, slowly falling apart.
sometimes she recognizes me, sometimes she does not.

i cant imagine anything worse either.

Posted by: matt | January 23, 2004 01:47 PM

Beautifully written. I think this disease has become everyone's greatest fear for their parents and for themselves.

Posted by: Miss Bliss | January 23, 2004 04:21 PM

lost my granny to this. it is indeed a horrific thing to watch.

Posted by: snowy | January 23, 2004 04:40 PM

i am so touched by your remembrance of your aunt kitty. the vividness and generosity, the grace. i think more and more of us have lost someone to alzheimer's, and your entry brings out everything horrible about the disease, while still letting shine everything poignant and beautiful about the person suffering from it. thank you.

Posted by: romy | January 24, 2004 06:30 AM

This is one of those posts that whisks the reader up and puts them right inside it. I thoroughly enjoyed it. So glad you wrote it. Reading it has made this moment and this day very special. Kudos to you for sharing touching and intimate thoughts that make life and living pretty darn special.

Posted by: Roberta | January 24, 2004 02:35 PM

Thanks CW.

Posted by: Brad | January 24, 2004 10:42 PM

Although I have no personal experience with Alzheimer's, my wife and I have discussed it many times. Your honesty and clarity in discussing such a difficult disease opened me up a bit more today. Thank you.

Posted by: Lyman | January 25, 2004 04:34 PM

Grandparents are your biggest fans. Visiting my grandmother when she no longer knew who I was was simply heartbreaking. We officially lost her in August, but the disease took her from us many years ago. My thoughts and prayers go out to all who deal with this cruel disease.

Posted by: Kelly | January 26, 2004 10:00 AM

Sorry for your loss, CW. Like others, my mom is going through this. It's been tough.

Posted by: Bill | January 26, 2004 10:38 PM

amazing thinking, amazing writing.

i'm so sorry for the loss and disease of aunt kitty.

Posted by: julia | January 28, 2004 12:32 PM

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