What can I say? – Part 1 | Dear Diane

by Elouise

This is the last piece Diane wrote for her friends about ALS.  I’ll respond next Friday.  It’s a longer piece, definitely tough reading.  Partly because it’s about her; mostly because it’s about us.  As always, your comments are most welcome.

What can I say?

Several years ago I watched an elderly friend confront the necessity of moving into a nursing care facility.  She had already relocated to the home of family members a few years prior following a medical crisis.  She remained alert to and interested in events and the new people around her.  Even with significant physical limitations she was very pleasant to be around.  Because I and others were often in the home of her relatives, she enjoyed many social contacts.  But when her physical problems began to take a greater toll, it became apparent her care was beyond the capabilities of her family.

I never heard her question the necessity of a change.  But I still hear her tearful acknowledgment of her fear in the presence of a group of friends:  “You will forget me.”

It made me uncomfortable.  It was an uncharacteristic expression of concern for herself from a person who often demonstrated concern for others.  I also suspected she might be correct and I much preferred not to think about that possibility.

Turned out she was wrong—yet sadly right.  I never forgot her.  I only ignored her.  I was a busy person with three young children—whose lives she had enriched.  It was less convenient to visit with her now—though I often passed within a block of her new home.  I didn’t like nursing homes—they were full of lonely people.  Other friends certainly were staying in touch—even if they never mentioned it.  Ultimately, I didn’t visit because I was ashamed of my long absence—though I knew she would only feel delight to see me.

It’s painful to recall how I chose to let her just drop from my life, and my children’s lives.  I now know it’s much more painful to be the one who makes others uncomfortable, to be the one ignored.  I write these words with great reluctance and fear of misunderstanding.  I’m certainly not forgotten.  For over four years meals have been delivered to our family three times every week by groups within our church family.  A portion of a new church facility was named in my honor.  I’m humbled by these expressions of love.  But any honest description of my ALS experience must include the most devastating of my losses, personal relationships.

I miss shooting the bull with friends.  I’m finally reconciled to being a silent listener, but I thoroughly enjoy hearing the latest scuttlebutt.  For several months after my gastrostomy I continued to attend the weekly family dinner at church for one reason only:  to be around friends and former coworkers.  As my speech became unintelligible except to my family, the number of empty chairs around me grew and the now briefer greetings came in a different tone of voice.  Yet I understood the dilemma I presented and knew I would have felt equally awkward in similar circumstances.  However, like my elderly friend, I sensed that my social contacts would be essentially cut off once I was out of sight.  It happened as part of the vent package.

I believe  too many of my friends just can’t reconcile my mind with my body, who I am with who I was.  Admittedly the changes are impossible to ignore.  My laborious letter by letter communication method is nothing like my frequent pop-off style of yesterday.  I can no longer talk (with my computer) and look at my friends at the same time.  I may start coughing silently during a conversation and look extremely distressed, not to mention the faces I can make when my trach is suctioned.  I’ve also been known to drool.

I don’t need a stream of visitors looking for profound computer conversations.  It’s virtually impossible to form new relationships which don’t somehow revolve around my disease.  My sense of personal identity remains absolutely unchanged.  I desperately long for the friends who knew me before ALS to recognize the same Diane in a new, less inviting home in an unfamiliar neighborhood.  I want them to know that I understand their apprehension, from the inside out.

September 2000

© Elouise Renich Fraser, 11 December 2014