How am I doing? | Dear Diane, . . .

by Elouise

It’s September 1997, less than a year since Diane was diagnosed with ALS.  The disease seems to have a mind of its own.  In her case, it has decided to concentrate on her ability to speak.  Diane wrote the following piece about this loss.

How am I doing? 

Several Sundays ago I was feeling upbeat after the evening worship service.  As we left I received more than the usual ration of pats and kisses–genuine expressions of love but difficult for me to receive in large doses.  Additionally, it seemed that the close friends with whom I truly connect had all skipped town, or at least church.

I responded to each greeting the way I always do, with a reflexive smile and a nod to questions for which my verbal responses could not be understood.  Of course the number one FAQ is invariably “How are you doing?”  I became aware that my inability to have “intelligent” interaction began to be a source of growing distress.  By the time I flashed the last grin it would have been easier to start sobbing.

Many months ago I decided not to waste any more energy hiding my growing disability.  (At that time we thought it was post-polio weakness in my left arm.)  For most of my life it was easier to hide than explain.  Later, after the ALS diagnosis but before I retired, I made a similar decision to no longer wish I could stifle my tears when I met weekly with the four men on our church staff.  From childhood I had learned to “suck it up.”  It had become automatic.  Although I now want to be open about the full range of emotions I experience, it is difficult to let raw emotion be exposed when I am unable to explain or interpret it; but I no longer have the energy to hold it in.

Probably the ALS pseudo-bulbar affect* has contributed to an incomplete picture of how I’m feeling.  I am very grateful that it has afflicted me more with uncontrollable laughter than crying, and that my appreciation of good humor is still intact.  My ready smile has most often been triggered by genuine amusement or pleasure.  It is a real evidence of inexplicable peace and contentment by God’s loving grace.  But I don’t think many people understand that for me, loss of speech is absolutely the most devastating transition I have faced.  More than any other change, this loss is redefining how most people relate to me.

I am ready to let it be known that once in a while the broad grin isn’t indicative of my emotional status nor of extraordinary spiritual maturity.  I also need to let it be known that I am struggling with this most recent loss.  Ultimately I must either accept that my grief will be seen at church or stay home.

If I stay home, my children will learn to stay home, emotionally if not physically.  Instead, I want all of my family to know that dignity has nothing to do with keeping pain out of sight, especially at church.  And I want the church to become a more comfortable place for people who can’t hide their hurt. . .for people sitting next to them.

September 1997

*The ALS pseudo-bulbar affect:  Inappropriate crying and laughing associated with upper motor neuron dysfunction.  This emotional lability [instability] is not an indication of severe depression or psychological problem.  Antidepressant medications help alleviate this frustrating condition.

Dear Diane,
When we were growing up it never occurred to me that any of my sisters were also finding ways to hide.  I knew I was.  Part of my ‘normal’ behavior.  And yes, easy!  So normal and easy that later in life I couldn’t just turn the switch off at will either.  You sucked things up, stifled your tears and hid your left arm.  I swallowed my feelings, wiped my tears and went silent.

I’ve been reading my Houston journals again—notes from my visit in July 1997.  You told me about hiding certain health issues from Mother.  That got me thinking.  I remembered many times I’d talked with you and our sisters about various health issues.  I don’t remember saying or hearing the words ‘Don’t tell Mother.’ However, since one way I hid was to tell Mother as little as possible about anything (information is power!), our various health issues were safe with me!

Here’s what I wrote in my journal:

I wonder what’s going on here.  It seems we’re all focused on health issues as the tie that binds.  It’s almost as though our health issues were our identities—so that giving away information about what’s going on (to the ‘wrong’ person) feels like losing control of a bit of self-identity.  But we’re not our sicknesses. . . .It’s like we’re all turning into Mother whether we like it or not.  Or we just don’t know how to relate to each other as adults except around what’s ‘wrong’ today (with our bodies), or what’s to be kept from Mother’s ears today.

I don’t know if that makes sense to you.  It made sense to me back then.  Mother lived with many unasked-for body ailments.   It was always tricky to ask or be asked, “How are you doing today?” I don’t think I ever got from her or gave to her an honest response.  It seems she and I were hiding from each other.

In your piece above, I hear you wanting to give an honest response.  Not with words, but with tears.  Body language.  Especially at church.  No amount of dressing up for church can possibly hide your grief.  Staying home isn’t an option.  “…Dignity has nothing to do with keeping pain out of sight, especially at church.”

The willingness to make pain visible and to sit with another person in visible pain is a two-way gift.  A gift that bestows and embodies dignity.  We didn’t recognize or practice this kind of dignity in our family.  Weeping was a weakness to be stifled, not acceptable or safe—unless Daddy was beating me, waiting to hear the “right” kind of weeping.  Daddy himself wept often in his private study as he prayed to God about things only God knows.  I wonder if he considered his own weeping a sign of weakness.

Thank you for clothing your dignity in tears during the years you lived with ALS.  Thank you for letting them spill down your face, onto your clothes.  I know crying was tricky for you.  You told me it couldn’t go on for a long time, or it would create other discomforting ALS challenges, especially in your mouth and nose.

That meant every tear was precious.   I loved seeing them, catching them sometimes on a Kleenex.  Wiping the snot from your nose.  Letting my own tears flow.  So freeing.  Something we never did as sisters when we were growing up.  We were busy sucking it up.  Swallowing it.  Trying to retain a small shred of dignity.

Love, hugs and tears from
your dignified and emotional
oldest sister,

© Elouise Renich Fraser, 8 August 2014