No pretense, no apologies, no regrets | Dear Diane,

by Elouise

ALS is relentless.  Diane’s loss of speech happens in stages.  More than anything else, it steadily brings her ‘normal’ life to a screeching halt.  No more easygoing give and take with Diane around a meal or cup of tea or coffee.

From my Houston journal

Saturday, July 1997 – I’m feeling tired today—exhausted—cried a little in the van yesterday listening to some of A’s [Son #2] country music about death, and family members going on ahead.  Diane’s voice is so weak.  She talked a little yesterday about supplemental feeding—and the day before about how telephone conversation isn’t going to be an option much longer.  I see her working hard to get her breath behind her words.  Her voice sounds forced and very nasal, especially when she’s trying to project from one side of a room to the other.  It’s all so steady and so downhill in terms of physical abilities.  I get really scared about what my next visit will be like.  How will we communicate?  What will she want from me, and I from her?  Maybe we need to talk about this.  There’s so little time to get ready for anything.  The circle of options keeps diminishing.  Retracting.

Sunday, July 1997 – Best conversation with Diane came late in the afternoon, sitting outside again.  Asked what she especially enjoys these days.  Began with how she looks forward to each new day—wakes up ready to go.  Then some long pauses—and a tearful confession about how much she can’t wait for everyone to get home each day.  Followed by how much she hopes/wants to be around to see E [Daughter] grow up.  Diane is teary.  I asked whether people still come by to see her.  I’d noticed not many had come by this visit.  She said she put the word out that long visits are tiring.  She explains that when new people come by with food for the family she doesn’t spend as much time with them now – her speech has become so difficult to understand that she relies a lot on family members to mediate.

November 1997 – Talking to Diane is hard work – No – Listening is hard work.  Intense concentration needed without getting nervous.  Also willingness to keep asking for help, and to let go of things I can’t understand.

The following piece, written in October 1997, captures just how important this is to her—and what it will take to connect with her just as she is.  It’s the fifth piece in her Words for the Ones I Love.

No pretense, no apologies, no regrets

When you can’t figure out my garbled speech, please don’t think you spare my feelings by pretending you understand.  I can tell.  If you acknowledge that my words didn’t reach you, I will try again or decide those words aren’t worth our effort.  I know very well that my words are muddled, but my thoughts are clear.  Sometimes I will gladly struggle to share them with you.  I need a quiet environment, some of your time, and your full attention.

When you ask how I’m doing and tears come to my eyes, please don’t apologize for asking the wrong question.   You asked, and I wanted to give you my honest answer.  If I cry, I am hurting at that moment whether or not you ask.  And there’s no need to change the subject.  Yes, I’ll likely smile again if you ask about one of my kids; but we have only diverted our attention, not my distress.

It may seem more comfortable to avoid risking the “embarrassment” of not understanding my words or of triggering my tears.  I am fighting another kind of discomfort, that of isolation.  I have many smiles I want to share.  But if I only let you see my smile, I am maintaining a very old wall around myself.

As my disease process takes its toll, parts of the wall are falling into disrepair.  Do I regret that I no longer have energy to maintain the wall?  No.  I find it’s a gift of God’s grace.

October 1997

Dear Diane,
This piece is painfully true, courageous, confessional, instructive, wise, gracious, direct and even invitational.

The part about your tears isn’t an issue for me.  I value every tear you let loose in my presence.  That means your heart was communicating with mine.  I wasn’t just getting a ‘report’ of the day’s news or even a summary of how you’d been feeling lately.  It was real.  Present.  Raw.  A healing balm.  The gift of something I don’t remember sharing with you or our other sisters when we were growing up.  We didn’t do tears together.

What really gets to me is the part about giving you my full attention:  eyes, ears, emotions, body language, time, focus, patience with the process.  As a highly intuitive person I’ve often prided myself on knowing what others think or feel even before they do!  Well—maybe not to that extent!

Nonetheless, as you know too well, the toughest part was giving up my need to figure out what you wanted to say before you said it.  I wanted to ‘help’ you by supplying the missing pieces.  You know, intuit it!  My great gift to those I love.

To be honest, I did intuit things sometimes, and you were immensely grateful.  Yet as your speech deteriorated and then disappeared, I had to stay calm and focused on you—not on my inner thoughts about what you might be trying to say.  When I interrupted and tried to complete your thoughts, it just made things more difficult.  You had to stop, start over, and get me back on track.  A waste of precious time.

I knew how to follow leaders–such as choir directors or musicians I’m accompanying, or dance partners.  What I didn’t count on was how difficult it would be to translate that into my relationship with you.  There was always something else to practice:

  • Restraining my intuitive self
  • Relaxing my body, mind and spirit
  • Waiting patiently and attentively
  • Not jumping the gun or dragging my feet
  • Letting go of my anxious desire to ‘help’ you along
  • Giving up constant apologies about mistakes
  • Accepting my limitations as well as yours

I’m still learning to communicate without getting immediate feedback from you.  Sometimes it feels awkward.  But most of the time it feels just grand.   I’m beyond grateful you showed up in my dreams and agreed to accompany me on my journey home.   It feels a little less lonely.

Love and hugs,
Elouise

© Elouise Renich Fraser, 21 Aug 2014