Wait for me, PLEASE! | Dear Diane

by Elouise

Houston airport, June 1998.  It’s hot, dry, breezy.  I’m exhausted after little sleep the night before, and an early morning rise to make my 7:30am flight.  Diane’s daughter picks me up at the airport.  We finally arrive at Diane’s house.   As always, my heart is pounding with joy and anticipation.  I’m about to see Diane again!  Hug her, kiss her, see her smiling eyes, catch my breath and catch up a bit.

Initial snapshot of Diane’s situation:

Major changes for Diane and Clay.  Hospital bed, supplementary ventilation, tracker system not yet operational.  Clay took bed apart the day after their anniversary.  Diane showed me her brief journal entries – teary.  Very sad.  Now I’m sleeping in their bed.  Conversation very slow and frustrating.  Great patience required.  Using letter card frequently.

The theme of this visit is loss.  Loss on top of loss, without time to absorb and adjust and find user-friendly workarounds.  There’s joy and laughter, too.  Outside it couldn’t be more beautiful.  Yet the general atmosphere feels heavy, tense, withdrawn and subdued.

A few more snapshots from my Houston journal:

Diane tried the BiPAP again this evening.  No go.  Mouth and lip muscles not strong enough to keep air from leaking out.  Says she wants full face mask.  Strange-looking contraption—another sign of her declining powers.

I’m frustrated beyond belief when I get stuck and can’t understand Diane.  Spelling out helps, but it also slows things down immensely.  After a while, I find myself not wanting to put out the effort to keep concentrating.

Diane very quiet and subdued.  Still no good computer solution.  A couple is coming Monday to demonstrate a device he’s rigged up for himself.  Heard Clay’s phone conversations about this and the supplementary ventilator.  Frustration building over Diane’s lack of computer access.  Her only good communication method.

Went out with Clay and Diane in the afternoon to pick new sheets and comforters for her room [and ‘new’ hospital bed].  Took a long time.  Much hard work communicating [with the clerk].  Diane visibly straining and distressed part of the time.  Not as relaxed and patient as at home.  Wondered if she felt self-conscious.  Very painful.  New sheets and spreads nice, but (to me) not as nice as her old ones.

Diane was never a screamer.  Nonetheless, I read the following words as at least an anguished cry, if not a scream from her heart.

Wait for me, PLEASE! 

In the middle of struggling to spell out a sentence or word my listener may forget about the previously completed words or letters.  After a momentary distraction or interruption they often forget I was in the middle of spelling a sentence.  Believe it or not, I attempt to say less than 2% of what I want to say.  When I do choose to spend energy trying to communicate, it is very important to me to complete the transaction.  I know I am painfully slow and the conversation or context doesn’t wait for me.  More often it mows me down and leaves me in the dust.  When I need to hit ‘rewind’ life seems stuck in ‘fast forward.’  By the time my words are transcribed my listener may have forgotten what prompted them.  ‘Real time’ conversation is history.

June 1998

Dear Diane,
I don’t know what to say.  You’re at the mercy of your listeners.  Even on a good day you barely scratch the surface of what you would like to say.  Laser-like concentration is necessary.  Many of us don’t have laser-sharp concentration in our ‘normal’ everyday conversation.  I didn’t.

At the (exceedingly low) risk of offending you, here are my instructions to myself for communicating with you.  If you don’t think they’re complete or accurate, don’t look at me.  You were my teacher.

How to Communicate with Diane

Memorize this alphabet card or place it in a prominent place just above Diane’s eyes.

A – B – C – D
E – F – G – H
I – J – K – L – M – N
O – P – Q – R – S – T
U – V – W – X – Y – Z
(Plus a row for numbers—easy!)

Secrets for successful communication

  1. Relax.  Take at least one deep breath.
  2. Watch Diane’s eyes.  She’ll signal when to start and stop.  Start over or continue.  Forget it and start over.
  3. Call out each vowel in order to find the right row of letters  (A – E – I – etc.)
  4. Call out numbers to find the right letter, beginning each row with 1, and proceeding thus:  1 – 2 – 3…watching Diane’s eyes for instructions.
  5. Yes, you really should memorize this.  The less you have to shift your eyes from the letters to Diane’s eyes, the better.
  6. Take deep breaths as needed.  Slow is sometimes good.  Fast is always dangerous.  As it progresses, you’ll find a nice rhythm.  Go with it.  It helps Diane and you. Don’t forget to breathe.
  7. Check your intuition at the door.  Diane knows EVERYTHING she wants to communicate.  You know NOTHING until she lets you know you do.  This CANNOT be overstated.
  8. Don’t overestimate your fine progress.  It can all fall apart if she has to begin the sentence yet again.  If her feelings of frustration show, that’s GOOD, not bad.  She DOESN’T hate you.  At least she didn’t stop to spell out her feelings.  REJOICE over small gifts.
  9. Don’t be too proud to have a memo pad and pencil already in your hand.  No need for bravado or over-confidence.  Diane is in charge.  Your memory is not.  Write it down.  Word by word.  Letter by letter if needed.
  10. Don’t forget she may leave out ‘obvious’ words—just the way you do when you’re writing in your journal.  Don’t get anxious about it.  Just let her continue.  DIANE is in charge.  You are NOT.
  11. Use your brain.  Every now and then it will be clear where Diane is going.  Just don’t get cocky.  It’s more distressing to her than to you (believe it or not) when you’re wrong.
  12. Unless it’s funny.  Then it’s OK to have a good laugh with her and then get back in the saddle.  You’re her link to the world.  She’ll thank you forever for your patience, which is NOTHING compared to hers.

Love and hugs from one of your finer adult learners,
Elouise

© Elouise Renich Fraser, 23 October 2014