Maintaining my space | Dear Diane

by Elouise

It’s 1998, only two years after Diane’s ALS diagnosis.  She makes a tough decision and chooses not to communicate it until after the fact.    Here’s her 10th communication to those she loves, followed by my response.

Maintaining my space

I am scheduled for a gastrostomy next week and have chosen not to inform most of my friends and family until after the procedure.  I will let a few friends explain in my absence that there has been no sudden change in my condition and [that] this transition will be an enormous relief.  I feel no need to apologize for or explain my choice beyond simply saying, “I don’t want to.”  However, I do want to explore and understand that choice for myself.

Unlike many individuals and families struggling with catastrophic illness, we have been surrounded by loving support generously expressed in tangible ways. We have never been tempted to wonder, “Who cares?”  At the same time, I suspect many people confronted with serious illness can understand my ambivalence about needing to accept even lovingly offered help.  It really isn’t simply a matter of stubborn independence—though I won’t deny some might have used those words to describe me once or twice.  It isn’t directly related to being reminded of an unrelenting progression of physical losses.  And I don’t think I’m “too proud” to accept help.  It is, primarily, a privacy thing.

I could readily describe my experience of the ALS disease process in terms of my systematic loss of privacy as I am forced to ask for and then receive help—from my husband, my secretary, my teenage daughter, my young adult sons, and an always expanding list of close  friends and complete strangers.  No room or closet in my home offers me a private sanctuary.  Sometimes my body can’t remember what modesty feels like.

I can no longer even grieve in private. Often as I am looking inside and writing, tears start flowing.  If I do not stifle them, someone will soon hear me on the monitor and come to help.  I will need them—to clear out my nose and throat.

I cannot count the number of times I have gritted my teeth and told myself, “I can do this,” as I surrendered another piece of cherished privacy. Fortunately, I discover that the person inside is still intact and as private as she chooses to be.

I don’t want my gastrostomy used as a summary of my “pitiful” condition. (Maybe I am “too proud”!)  I don’t want to be the subject of news bulletins disguised as prayer requests by people who gain something by telling the source of such information.  Yes, I understand that dynamic; I have played that game.  I am neither a hero nor a saint of great courage, just an articulate survivor.

February 1998

Dear Diane,
This piece makes me want to cry every time I read it.  Especially the last paragraph. Your description reminds me of the dynamics of gossip, and calls to mind one of my favorite proverbs:

Gossip is so tasty!
How we love to swallow it!
* * *
Proverbs 26:22, Today’s English Version,
aka The Good News Bible  

For what it’s worth, here’s what I think (even though you didn’t ask me!). The hungry crowd (us) enjoys hearing the latest horrific update, whether we know the victim (you) or not.  Something about pain and tragedy turns many of us into voyeurs, at the expense of those we’ve chosen to make objects of our seemingly insatiable curiosity.  And yes, some actually get something from being the person who conveys the latest update, especially if it’s bad news.

It seems there’s always a ready audience, not just in churches.  Our news channels know exactly what we want, and serve it up on platters overflowing with often outrageous, terrifying bits and pieces upon which to feast our starving eyes and ears.

In church or elsewhere, we may acknowledge the horror of it all and then silently comfort ourselves with an age-old lie:  The reason this disaster happened to that person is that she or he is deficient.  We, on the other hand, are “blessed.” God has smiled at us.  We’re special (and protected) because we’re better.

Sadly, ALS relentlessly unmasks helplessness, not just in persons with ALS, but in all the good people who care for and about them.  In January 1998, the month before you wrote this piece, my journal tells the truth:  Your capacity to control your body is being peeled away, layer by layer.  For example, you can’t give us all the familiar verbal or bodily cues and clues that help us understand your meaning.

Something similar is happening to us.  Our ability to exercise control on your behalf is also being peeled away, layer by layer.  We can’t stop ALS or make up for what ALS has stolen from you.

If I hadn’t been able to visit regularly, I couldn’t have walked in at the end, in 2006, and experienced the sisterly relationship I had with you. Cues and clues disappeared between visits.  In some ways I could pick up where we left off.  But it was never quite where I thought it would be.  So much was new each time—for you, for your caretakers, your family and your friends.  A constant work in progress, with no promises about tomorrow.

When I reviewed my Houston journal notes for January 1998, they dropped me right back into the agony of your situation and the decisions you had to make. You’re moving into a different phase of ALS, and ALS isn’t waiting for you or anyone else.

I’m weepy and distressed, even though things are playing out exactly as predicted in all the material I’ve read. The atmosphere in your home and especially in me is tense because you aren’t able to eat or drink enough, or speak very clearly.  You’re more vulnerable and dependent than ever.

Even loving, attentive caregiving isn’t adequate to make up for your losses.  Our hearts are breaking.  Your heart is breaking.  You and your family have decisions to make.  Not just once for all time, but for the present in light of a yet unknown future.  Your gastrostomy decision isn’t the first or the last decision you’ll need to make.

And yet, without those visits over the years, I could never have walked into your life late in ALS and had the relationship we had.  It was a long way from Philly to Houston.  But that was nothing compared to the way each change in your situation increased the distance between us.  Not the distance between our hearts, but the psychic, interpersonal distance we had to travel to meet and be with each other, to converse and catch up a bit.  Always for just a handful of too-short days.  Then it was time to say goodbye, so something else could come along to reset the distance.

I wanted desperately to stop the clock. It just kept ticking.

With no regrets, and with overflowing love and hugs,

© Elouise Renich Fraser, 9 October 2014