How can I say thanks? | Dear Diane, . . .

by Elouise

Diane, Sister #3, died in February 2006 after living 10 years with ALS.  From October 1997 until September 2000 Diane wrote short pieces she called Words for the Ones I Love.  Most are about her relationship to the local church she served for 7 years as Minister of Education/Administration.  She took disability retirement in May 1996.

The pieces are not confidential.  Diane gave me permission to use or publish them as I saw fit.  In fact, she liked the idea that her words might be read by more than her family and friends.  I’m excited to begin letting you see a bit more about her and the ways our lives connected.  Perhaps she’ll connect with you, too.

In addition to these pieces, I have several journals devoted to visits with Diane from 1996 to 2006, along with other documents from that period.  During my visits I witnessed pieces of her remarkable journey.  I’ll draw on all of this for my Dear Diane posts.

Below I’ve written a brief description of how Diane wrote these words.  That’s followed by her first piece and finally, my response to her.  As always, I’d love to hear from you–comments and questions are welcome anytime!

First, Diane and writing–how she did it
One letter,   one space,   one backtrack at a time.
One equipment adjustment  at  a  time.

Watching the process is   e x c r u c i a t i n g l y   painful.
Like suddenly falling    into   s l o w – m o t i o n.
Silently willing everything to speed up yet finding myself   totally   out   of   control.

Diane and her caregivers have to learn how to set up the equipment and connect it to her body just right.  This means making mistakes and practicing patience right along with new skills.  Not for the weak-willed or impatient.  Awkward and cumbersome at best.

With each letter, punctuation mark or space, Diane makes multiple decisions and coordinates eye gaze and small bodily movements.  The equipment, including what gets attached to her body, must be precisely on target.

Mind, body and emotions must be focused, controlled, intent on the end product.  Not derailed by this or that ‘small’ hitch along the way or–even worse–unavoidable and avoidable interruptions.

What does it look like?  Here’s one example—though it’s light years ahead of Diane’s late-1990s equipment.  The man in the demo has much more control of his head and eyes than Diane, and can hear what he has just written.  Watching him hit his targets is like watching a busy, speedy typist.

Nonetheless, for several years motion-tracking devices like this allow Diane to write things she can no longer say out loud.  This isn’t her only way of communicating.  It is, however, the only way she can have full control over her words—not as remembered, but as recorded.  In her own words, no one else’s.

Here’s her first piece, followed by my response.

How can I say thanks? 

Many thank you notes begin with the disclaimer, ‘Words cannot express . . . . ‘  As my speech is becoming unintelligible, I have discovered that I can and indeed must express myself through written words if I am to remain free within this body prison.

As I have considered how to respond to the love which is surrounding me and my family, I have concluded that the best gift I can offer is to write honestly about what is happening inside of me.  When my thoughts are ready to be shared I trust this ‘gift of words’ will become a meaningful expression of my gratitude.

I learned to use words long ago.  Sometimes they were written, more often spoken.  I particularly enjoyed speaking to large groups where I was in control and the focus of attention.  I learned I could hide in my words while I presented myself as I chose.  I now need to use words in a very different way.

I want to contribute toward greater freedom for hurting people and those who encounter them.  I doubt that I have the energy to complete such an undertaking to my own satisfaction.  The process will be satisfying enough.

October 1997

Dear Diane,
When I read this piece again last week, I thought about something you told me.  This was several years after you came for the meeting with our parents in 1993–not long after you were diagnosed in 1996 with ALS.

You told me that after that meeting you lost your ability to resort to humor when you communicated with our parents.  As I recall, you were none too happy with me about that.  It seemed I had destroyed your favorite hiding place.  Nothing was funny anymore.  Just real.  And painful.

I never told you that at first I felt defensive.  Caught off guard by how deep your pain was about losing that option.  Then you told me how you’d worked through this—with your counselor.  This had helped you come to terms with your relationship to our parents.

I’m so grateful you told me what was going on inside you.  You didn’t mince words.  You just told me the truth.  Your words fed part of my deep hunger for sisterly conversations about real life.

Here’s something I don’t remember telling you.  Maybe you’ll get a chuckle from it?

In spring 1994 I was in Savannah talking with Dad about my childhood—in particular, about his harsh punishment of me.  David [my husband] and Mother were also there.

Dad is carefully, laboriously explaining his well-considered approach to each of us when it came to punishment.  He describes how he thought about his own family and decided that each of us was like one of his brothers or his father (that would be me).

He shakes his head and laughs a bit when he comes to you.  Then he says you were a Negotiator, just like his older brother who always drove him crazy!  Dad liked to just lay it all out so his brother could take it or leave it; to Dad’s great frustration, his older brother always wanted to negotiate something better!

According to Dad, you were ALWAYS thinking ahead—always eager to negotiate, always suggesting a better alternative that would benefit him (and, of course, you)!  He admitted he never knew quite how to handle you.  To my amazement, he seemed to like this at least a little bit.

So there you have it—for whatever it’s worth.  A witness to your incredible will to live life–whatever it looked like–on your own terms.  Not anyone else’s.  An open, above-board strategy.  Not a way of kidding yourself or anyone else.  I want to be that way when I grow up!

Love and hugs,

Elouise

© Elouise Renich Fraser, 24 July 2014