Telling the Truth

She is adamant:  “I’m still Diane!”  It’s a theme in her life with ALS.  Getting it across costs her time and energy—well worth it from her perspective!  I certainly didn’t know how to relate to someone with ALS.  Diane brings us on board.  This piece is the 7th in a series.  She wrote it about 22 months into her life with ALS.

I am still me

It may seem surprising, but Diane is still quite intact inside her failing body.  Don’t be misled by my belabored speech.  My mind races while my tongue struggles (decidedly better than the reverse).  My mental vocabulary remains unaltered as I search for words I can say clearly enough for you to understand.

My personality is unchanged.  I am still analytical, articulate, assertive—or bossy, if you prefer.  I have “to do” lists for my family members and Clay is learning to check for e-mail reminders at work.  I often want to jump into a lively conversation but I’m beginning to concede that my speech dis-fluency has destroyed my timing.  I am trying to accept that I can no longer throw out the pop-off comments which flash through my mind.  It seems I am often the only one laughing at my jokes these days.

I have been asked how it feels to have ALS.  When I try to move and nothing happens I am reminded of times I felt I couldn’t move while I was dreaming.  Apart from sensing that I am stuck, I feel like me.

October 1997

Dear Diane,
I read this piece many times over, wondering how to respond.  It occurs to me that you might want to know whether I am still me.  Not just now, but back then—especially when I come to visit you.

I’ve consulted my trusty (sometimes too true!) Houston journals.  I can’t say I like everything I find there about myself.  Accepting your reality and living into it was like looking into a mirror.  I could see things about me that didn’t feel comfortable or comforting.  Here are examples of what was going on inside me:

• I’m unsure of myself, including who I now am to you
• Sometimes I’m overwhelmed by anxiety, guilt, grief, anguish, questioning, second-guessing my behavior; definitely not on solid ground
• I don’t like the way some changes impact my plans for this visit

Your new normal immediately becomes my latest not-normal.  I’m off balance.  Sometimes walking along a precipice, inch by inch.  Wondering whether I’ve gone too far.  Am I about to fall over the edge?

For example, in November 1997 I’m enjoying my first visit with you since I got back from Kenya.  Here’s my journal note:

Showed Diane Africa pictures after lunch – some not there – feeling bad about not going through them before leaving [for Houston].   Also feeling my camera shots are pretty inferior compared with Diane’s – and that this in no way brings her closer to Africa – just closer to something we’ll never share.  So I had an edge of guilt or shame as I went through them.  What’s this about?  Do I need to talk to Diane?  I think so.  This is partly about how Diane has empowered me – to move beyond my ‘small’ world in positive ways.

Such internal drama!  I wasn’t afraid of bursting into tears.  I was afraid I’d seem insensitive.  Too happy.  Not appropriately sorrowful about something…but what?  Having fun while you’re back in Houston dealing with ALS?  Maybe. Perhaps I’m also apologetic about being healthy.

Here’s something else that wasn’t ‘me.’  As you know, I like organization and having a plan.  It helps me stay on track and know I’ve accomplished something at the end of the day.  It also helps keeps free-floating anxiety at bay.  So I make lists of things to do.  Never mind that they’re sometimes way too long, especially back then.

Arriving in Houston usually meant throwing my plans to the wind.  I still had lists, but they became wish lists, not tasks I had to do.  Instead, my focus was on doing whatever needed to be done.

If you had a ‘to do’ list for me—which you usually did!—it took first place.  Sometimes this meant I sat at the kitchen table sorting through piles of medical and insurance forms.  This, of course, meant not sitting next to you or pushing you around the neighborhood for a wheelie walk.  Or talking about something near and dear to me.  Or to you.

Other times you were doing your own tasks on the computer, using your newest equipment.  My ‘task’ was to sit there reading a book, present and available to look things up, or call someone else to help you.

Sometimes arriving in Houston felt like going on vacation, away from the crazy schedule I kept on my job.  Sometimes it seemed I had morphed into part of the wallpaper:  beautiful (if not gorgeous), loved and deeply appreciated.  Also insanely grateful when you needed me to do ‘something.’  Anything!

I picture our times together as long periods of waiting interrupted by brilliantly illuminated moments of connecting.  Moments I treasured.  They also reminded me that this won’t last forever, and that there’s no way to make up for so-called lost time.

I know it wasn’t lost.  Even so, I sometimes wish we could go back to pre-marriage and motherhood and working days.  Pre-ALS.

Some say this is part of the human condition; I just need to accept it and move on.  That doesn’t soothe me.  Here’s what soothes me:  We found each other and were willing to take the risk of getting to know each other as adults.  Showing up for each other.  Telling the truth.  For all this and more, I’m grateful.  Not everyone has this once-in-a-lifetime opportunity.

Love and hugs,
Elouise

© Elouise Renich Fraser, 4 September 2014