Why do I smile? | Dear Diane, . . .

by Elouise

July 1997 – Diane consumes books and articles about ALS.  She watches for TV specials–anything that tells the truth about ALS.  She and her husband soak up the viewpoints of ALS patients, their family members and caretakers.

Diane takes them all in and thinks about herself and tough decisions that lie ahead.  Things like whether to go on a ventilator, and how to manage end of life issues.  Nothing takes the place of first-person witnesses and documentaries about other ALS comrades.

While I’m in Houston her latest good read arrives:  How Will They Know I’m Dead?:  Transcending Disability and Terminal Illness.  It’s written by Robert Horn and was published in 1996.  As one customer review puts it,

Mr. Horn’s determination, will to live, outlook on life, and his achievements are something we all could take a lesson from. He seems so happy and vibrant you almost forget that he typed the whole book with his foot! His descriptions of his family and friends support is enough to make the happiest person in the world jealous.

The day I leave Houston, Diane has propped the book up on her book holder.  She’s ready for her helper  to turn the pages.  Diane is navigating another transition to a more difficult stage of ALS.  The new book will help her cope with what lies ahead.

In the meantime, life goes on daily—as do her sparkling smiles!

Why do I smile?

I smile readily and enjoy life for many reasons.  Even though my body isn’t functioning too well these days, I still find it is a comfortable enough place to live.  I receive superb care in a pleasant environment and sophisticated computer equipment to make life easier.  My friends put delicious food on my family’s table; my doctor tells me emphatically not to lose weight!

I sleep well at night (for as long as I like) and stay awake, alert, and occupied all day.  I probably have less pain and discomfort than I did when all my body parts were working.  In fact, I am more rested and relaxed than I have been for years.

I have never enjoyed my relationships with friends, family, God or self more than I do now.  I have never been more aware of and grateful for the love which surrounds me.  Certainly there are times when my losses and the losses of the ones I love overwhelm me with grief.  One day I may long to leave this body which imprisons and isolates.  Until then I want to prepare for that time by savoring my relationships each day.

October 1997

Dear Diane,
I had to think hard about how to respond to this piece.  One part of me wants to paint the bigger picture of your wacky sense of humor.

Your family and friends know that sometimes your smiles hide the machinations of a fertile, devious mind that’s plotting when and precisely how to pull off the next practical joke.  Or which bawdy greeting card you’re saving for so-and-so, and exactly what you will say to him or her.

My angel side got the better of me, though.  As I thought it over, I realized that rehearsing examples of your wacky sense of humor would be a diversionary tactic.  Why?  Because back then I was struggling regularly with anxiety attacks and inner voices.  Not losing the battle every time, but somehow always feeling I was about to drown in who knows what.

When I read your piece above, I hear serenity.  When I review my personal journals for fall 1997, I hear and see a giant see-saw between sheer panic and reality.  I don’t even have to read the words.  My ballpoint pen can’t seem to stay on lines, and my furious writing almost pierces the paper.

In this late August 1997 entry, I’d just returned from a trip to Kenya with David.  We were gone for only 2 or 3 weeks and had a wonderful time.  I remember being torn with anguish before we left because I was afraid I might never see you again.

But we returned and you were still in Houston, chugging along one day at a time.  So now I’m home, facing what I think is reality just days before the beginning of a new academic year.

From my personal journal in late August 1997:

[It’s] Tuesday morning – looking at my office – unfinished business everywhere.  I don’t know where to begin.  I feel driven and directionless all at the same time.  I’m disorganized and unprepared for the new semester – wishing I had another month – not to work on job-related stuff, but to do family work.

Going to Kenya was great – and I feel a great hole was cut out of my time to wind down and get ready for a new academic year.  It seems I’m more behind now than I was at the beginning of the summer.  Everything is screaming at me saying   Do this!  Do that!  Why haven’t you finished this yet?!  And there isn’t an inch of free workspace anywhere.

Things have piled up, and will keep piling up.  I want a plan — I also want time to cry and rage and work on my inner self. . . .I need my sanity.  A semblance, at least, of order and calm.  I don’t know where to begin.  Or how. . . .There’s so much to do that I feel paralyzed!  No matter what I work on, something else will just get even further behind!

You get the drift!  Definitely not serene.  No smiles on my face or in my heart.    My next lines after this anxiety attack rant are telling:

Sometimes I just want the clock to stop.  I’m not sure why – I know I don’t want to lose anymore of Diane or myself than I already have.  This [rant] is all true.  But is it the truth about me right now?  What is the truth?

I then list 23 [I counted them!] productive and sometimes enjoyable things that accurately acknowledge the truth about my summer break—things that still bring smiles to my face!  Then I say something I don’t remember writing:

I keep wondering about God – I’m not feeling very ‘close’ to God right now.  And I’m not sure I want to change this at this time.  Maybe it isn’t fair or  right, but right now I just need to take God for granted – knowing I can’t possibly understand what God is up to right now – and that God will be faithful to me now, as in the past.

I have a calling.  A task.  A job to do.  I can’t afford to get or stay stuck in this anxious mode.  It isn’t the truth about me or about  God.

When I read your words about why you smile, I can’t help wondering whether that’s the ‘job’ God gave you to do right then.  Just be yourself and smile.  Not a fake smile and not a ‘happy Christian lady’ smile, but a smile that told the truth about you more eloquently than your words could ever communicate.

I think it’s your smile of serenity.  Not a smile of perfection or your angelic nature, but a smile born of acceptance, courage and great wisdom.

Love, smiles and hugs,

© Elouise Renich Fraser, 28 August 2014