Telling the Truth

By the summer of 1997, about 1 ½ years after diagnosis, Diane’s speech and body no longer look or behave as usual.  Sadly, I no longer know how to behave as usual around her.  ALS is invading her body and her life.

From my Houston journals, July 1997

• Diane’s speech has deteriorated a lot.  Saw her as I got off the plane—tanned, smiling, frosted short hair, Bermuda shorts and a shirt, white shoes/socks, and an ankle brace.  Very indistinct voice – especially in the waiting room. . . .  Couldn’t hug Diane enough.
• Van ride [from airport] frustrating.  Great van.  Horrible for conversation from front to back [Diane’s wheelchair is locked into the front passenger space; I’m on the very back seat with Diane’s helper, M.]  Felt bad about telling M things [personal news] I want to tell Diane.  Resolved to tell Diane everything I told M.
• One bad moment turning a corner—bumpy and jerky.  Saw Diane’s upper body being thrown back and forth.  Horrible.  Scary. . . .
• I feel Diane slipping away more than before – it’s about her voice going.  Her ability to enunciate is markedly lower.  It’s harder to follow what she’s saying – though she doesn’t hold back from talking, especially at home.
• Eating has become a slow chore for Diane and whoever feeds her.  Slow and somewhat messy.  She can’t move food around in her mouth very well, or clean her teeth or lips.  I don’t even want to write about it – it’s one very normal, 3 times a day process that’s becoming less and less normal.  I can see how easily she could begin losing weight. It just takes so long to finish a full meal.

Sunday mornings at church
Diane attends church nearly every Sunday throughout her 10 years with ALS.  So do her husband, her home care helper or a nurse, a growing accumulation of equipment attached to her and to her wheelchair, and any other family members.

She always sits in the same area—parked in her wheelchair at the end of a row in a middle aisle, about half-way down to the platform.  Husband, helpers and others sit in the pew.  She isn’t in the back row under the balcony, or in a designated wheelchair space.  The worship space is large, curved around, with multiple aisles.  It’s impossible not to notice Diane.

Diane wants to see and be seen by choir members, former staff colleagues, ministers on the platform, the pastor and, of course, her many friends and supporters in this large family like congregation.  She’s still Diane!

No hiding.  No apologies.  No quick exit during the last hymn.  She loves being there, participating as she’s able in the music and prayers, listening to Scripture, the sermon and all announcements.  She doesn’t miss a thing.

Following the service she leaves with everyone else.  We crowd into the large entry hall/foyer where refreshments are already set out and conversation is encouraged.  It’s noisy, difficult to navigate on foot.  Her wheelchair takes up a considerable amount of space.  Yet people gather around to check in with her.  Everyone gets a big smile.  Diane’s words below reflect on these and similar encounters.

Patting or touching?

I have been trying to figure out the difference between what I perceive as patronizing pats and a comforting touch.  I think I make several subjective distinctions.  The ‘patters’ want assurance that I’m feeling fine; I am touched by people who can accept whatever I am feeling.  The ‘patters’ want to feel good after they greet me; I am comforted by people willing to carry some of my pain away with them.

It probably doesn’t matter that I can no longer respond intelligibly to a ‘patter’s’ perfunctory ‘How are you doing?’  I don’t think they were planning to listen attentively to hear my real answer.  Simplistic questions wait only for simplistic answers.  People who touch me patiently struggle with me for meaningful interaction.

Do I wish I could screen out the ‘patters’?  Sometimes, but not often.  I know what it’s like to be inept in the presence of someone whose experience is foreign to mine.  I believe many pats are awkward attempts to touch me, to let me know I am loved.

Sometimes people don’t know what to say.  Sometimes I don’t know how to respond.

September 1997

Dear Diane,
When we were growing up I can’t remember any times when I held your hand, or put my arm around you to comfort or encourage you.  Or even to sit side by side, leaning on each other.  I probably held your hand when you were very young.  Beyond that, I have precious few memories of touching you except when we were saying hello or goodbye.

Physical touch is one of my big issues from childhood.  It always felt edgy to me, whether initiated by me or someone else.  Yet I craved it as a sign that someone loves and accepts me just the way I am.

When I began learning about ALS and looking at pictures of people in various stages of ALS, I felt deep sadness.  Who would touch you to let you know you were loved?  Or that you were beautiful just the way you were?  I hoped, rightly, that your husband and children would.  But beyond them, who would do this?

As the disease progressed, many people touched your body, primarily to take care of your physical comfort needs.  Sometimes it seemed your body didn’t belong to you anymore.  It was available to anyone, anytime—with or without permission.  Sort of like a huge ongoing project that required regular maintenance.  Not the body of a person in love with life.

My fears and questions were, of course, about me.  Would I now, as your adult sister, be able to touch you to let you know not just how much I loved you, but how acceptable and beautiful your body was to me and, yes, how much I wanted to bear some of your pain?

I thought often about Mother coming home from the polio hospital in 1950 with a distorted face and body.  I took one look, burst into tears, and ran away.  This wasn’t my Mother!  I didn’t want her to hug me, and I wasn’t about to hug her.  To me she seemed untouchable.

In my early  Houston journals I keep coming back to touch.  Hugging you was easy and wonderful.  In the early stages of ALS I got to put my arms around you in a bear hug to help you get up out of your chair.  More than a caretaking hug!  But what will I do with my hands and my heart when you’re in your wheelchair?  Or lying on your back in bed, unable to move?

I watched some of your favorite, most-trusted people touch you.  They knew how to maintain reassuring, calming physical contact with your body.  The kind that accepts whatever happens on any given day and responds accordingly.  Because they’re connected to you—not to your disease.

Like learning to walk, I tried one awkward step at a time.  Was I transgressing your personal boundaries?  What if you didn’t like this?  You couldn’t just move away or turn your back.  Most difficult of all for me:  you couldn’t reciprocate.

Somehow it all came together.  I got comfortable in my body and with your body when I was around you.  I felt safe with myself and safe with you.  I learned to touch you.  I learned to follow your lead, not my fear or anxiety.  I learned that just being there was a gift for both of us.  Touching you was a way of saying I’m here.  I love you.  I want to walk or sit out a bit of this journey with you.  I want to share a bit of my life with you.

Thank you for trusting me and inviting me into your life.  Not just back then, but now.

Love and hugs,
Elouise

© Elouise Renich Fraser, 1 August 2014