Telling the Truth

Is there anything ‘normal’ about ALS?  If so, I haven’t yet discovered it.  That’s ironic, since life itself is fraught with unexpected events, twists and turns.  Yet we call it ‘normal.’  Why not ALS, too?

I learned early how to answer the inevitable question of my heart:  Why me?  Why my family?  The answer was always the same:  Why not you and your family?  Somehow that seems normal to me.  Things happen that we think will never happen to us–even though they’re happening all around us to other people.  Normal.

Still, I understand and live with the constant tension of wanting things to be ‘normal.’  So did Diane.  She, however, had to define her own normal daily, within the context of a seemingly ‘ab-normal’ existence.  Not without God, but often without much we call normal to depend upon.

I love a circus!

Life seems most normal when I’m surrounded by active people who are comfortable enough around me to just be themselves.  Usually the group includes my kids.  For them, I’m just Mom and life continues.

On my last birthday Andy drove down from Dallas and my sister Elouise was here.  Eric, who plans to add another last name to Erin next year, also joined us along with his mom’s dog, Mandy.  Of course Clay, Chris, Erin, my nurse, and our dogs Oreo and Snickers were all present with me.  Eight people and three dogs, in my usually quiet bedroom!  The TV was likely on, but certainly not heard.  In my convex mirror I observed Clay flat on the floor inciting more noise from the dogs.

Elouise, who generally enjoys a more sedate home environment, commented on my bedroom “circus.”  And I always enjoy a good circus.

September 2000

Dear Diane,
Your more sedate sister here.  Not quite so sedate now as I was then.  Thanks to our new baby Smudge.  Actually, he’s over one year old.  Some days are worse than others.  Here’s an early ‘worse day’ scenario.  We confined him to the laundry room overnight until he was a year old.  This greeted us one fine morning!  Smudge, of course, is nowhere in sight.

~~~What a night!

   Another action shot.  Definitely keeps us on our toes.

~~~Peek-a-Boo!!!

 And one recent shot–

~~~King of the Mountain

Today he taught us it’s OK if he sleeps on our precious heated water-bed during the day—IF we cover it with a sheet so we can collect all his precious fur.

Then there’s the not-so-fun stuff.  This week I’ve been reading my Houston journal for trips in January 2000, April 2000 (your 51st birthday) and August 2000.  ALS is taking its toll on everybody, while life just keeps moving on.  A constant clash of realities.  Here are three excerpts from January 2000.

Teary all day—actually, since watching Tuesdays with Morrie last night.  The scene where Mitch and Morrie say goodbye really got to me.  I’ve been thinking about how stingy we are with our tears for each other right now.  Even though I want to cry, I feel constrained not to, because ALS patients need a positive, upbeat approach to life.  I also know Diane can’t reciprocate—It creates too many upper respiratory problems.  So I stifle it—at least when I’m here and around her.

Later—
Feeling at loose ends this trip.  Communication more difficult than ever.  Diane’s caretaking routines are longer and more difficult than ever.  Tons of interruptions.  Keep wondering whether it does Diane any good at all for me to come.  It certainly cuts a gaping hole in her routine.  So I’m doing a significant amount of sitting and watching—along with transferring digital photo files for her.

One more—
I’m full of unwept tears and a kind of despair.  Wanting to do something useful/helpful, but feeling totally powerless.  More and more it seems there are two lives going on in the house.  Diane’s, which is becoming more and more constricted, and everyone else’s.  The pain of Diane at her computer in the bedroom while everyone is in the living room or kitchen having a good time together is almost more than I can take.  I don’t feel guilty.  I just feel keenly how much she has slipped away from us and how alien-like her existence and ours have become.  Divergence.  Distance.  More echoes and less direct connection.  A kind of time warp that seems to leave her behind or push her far ahead and beyond.  What does it mean to relate, when most of the communication is one-way?  It’s as though her communication has been pared down too, losing the depth and breadth of nuances and allusions and word plays.  I wonder sometimes whether we’re even communicating on the same page.  Whether I’m missing most of what she wants me to hear—thinking I’ve understood when I haven’t.

Thankfully, before the April visit you got a new, improved double-eye tracker.  You still needed huge chunks of time for personal care, but your ability to communicate improved a lot.

Yet my journal notes are painfully true.  In 2000, you’re still with us and will be for six more years.  It took a while, but I found a rhythm.  A way of being with you that wasn’t what either of us preferred.  Nonetheless, looking back, it was more than enough for my heart.  I hope it was for yours as well.

Love and hugs,
Elouise

© Elouise Renich Fraser, 5 December 2014
Photo credit:  DAFraser