Can we talk? – Part 1 | Dear Diane

by Elouise

Houston, March 1999.  A small family gathering in memory of Mother’s death in February.  Several next-generation cousins are there.  We watch a video of the memorial service for Mother.  Death is in the air and on my mind.  Not simply Mother’s death, but Diane’s and mine.  Did Diane’s ALS break Mother’s heart?  Perhaps.  It’s breaking all our hearts.  An unwelcome guest.

I’ve chosen not to respond here to this longer piece from Diane.  It’s #16, one of the last she wrote.

Can we talk?

I am dying.  Sooner rather than later.

Those words beg to be disguised, modified, or softened in some way.  Though they state a painfully obvious reality, we prefer to act as if we don’t see this ugly beast which has invaded our home and now sits in our faces day and night.  We feel exposed and vulnerable because it totally disregards our accepted personal space boundaries.  We attempt to control the monster’s intrusiveness by controlling our outward response to it.  It is much uglier than anything we have seen before but we still attempt to take the ugliness in stride.

We desperately need to find the courage to speak our thoughts about my death openly to one another now.  I envision several benefits.  I have learned that those things we label “better left unsaid” often are walls which imprison and isolate us from one another.  Is there anything better left unsaid?  Certainly.  But clearly not the realities of life, and death, [which] we fear and prefer to crowd from our consciousness.  How much freedom do we wish to sacrifice by pretending we can hide from a dreaded reality which will find us too soon?

I also envision that by facing this monster together the relationships between the ones I love most will only be strengthened and the potential for later regrets minimized.  What might we wish we had said or asked when it’s too late?

There are many questions for which there is no answer.  But there are unasked questions for which the answers are simple.  How much needless anxiety do we carry alone because it seems too difficult to expose our ignorance to others?  And how much pain do we only prolong by not asking painful questions?

Several months ago my husband and I forced ourselves to face the legal issues surrounding my illness and death, and his coming death as well.  After all, when I could no longer sign my name the issue was hard to avoid.  We also addressed the end of life choices a person with ALS can anticipate when they may no longer be able to communicate their desires.  It brought instant relief, and it will eliminate unnecessary future stresses.  But there are many other practical preparations which could likewise dissolve present and future distractions and dilemmas when they will be most painful.  How much do we wish to compound the difficulty of the day we know is coming?

My greatest fear is not my death which will come too soon.  I fear withdrawal from relationships, not primarily with me, but between those who will experience intense grief when mine is over.  I believe that if we can talk now, we be less likely to feel isolated in the darker days ahead.

One might think as they read these words that I have resolved my own reluctance to “speak” openly of my coming death and that I am simply waiting for those I love to catch up.  It’s not that way.  These private thoughts were organized and most of the words written about nine months ago.  They are primarily for my husband and children with whom I have greatest difficulty facing these matters.  At the time they were first composed, the progress of my disease brought perceptible changes every week.  I feared my death was closer than any in my family recognized.  I had not yet done all I needed and could do to prepare them and myself for that loss.

For the first time in five years the weekly changes have now ceased.  I have already lost most of the muscle function which ALS can claim.  I have remained alive with a machine forcing each breath into my lungs and then sucking it out.  And I welcome this new partner which could extend my life for years.  My overall health has improved (my blood pressure dropped between thirty and forty points!) and I feel as alert as ever.  The urgency of nine months ago has disappeared.  Or has it?

More than once I’ve expressed my gratitude that ALS is not an abrupt death and that my mental function is not touched. I have been given time and ability to prepare with my family for my death as much as humanly possible.  I’m watching with inexpressible gratitude as this crisis is pulling us together rather than driving us apart.  But nothing I wrote nine months ago has changed, except for one thing:  I no longer fear that my family members will withdraw from one another.  Another reason not to fear difficult conversation.

April 1999

Diane lived with ALS until February 2006.

© Elouise Renich Fraser, 19 November 2014