Diane, the “fair carpet” and God

by Elouise

After living with ALS for 10 years, my sister Diane died in spring 2006.  This week I’ve been reading through some of my Houston journal notes.  I kept them when I flew to Houston to visit Diane.  As I read, I couldn’t help noticing how often communication was a topic.  Usually because it wasn’t working right.

Though it wasn’t impossible to understand Diane, sometimes it became exactly that, with frustration on all sides.  By 2002, communication was a major issue for everyone.  Diane’s communications were often about bodily needs that only she could detect.  A lot was at stake.

Sometimes tears began flowing on all sides, and good tempers stressed out.  The delight of being with Diane and of her being with us became like winter.  Not fair spring, hot summer or gorgeous fall.  She was now moving into what sometimes seemed desolate and unrelenting—more like frozen lakes, howling winds and mountains of icy snow and litter.  Or Texas lightning storms with torrential rains and flash floods.

Given Thursday morning’s post and my question at the end, one passage in my August 2002 Houston notes stood out.  First, my question, then my journal entry.

Might we also, as God’s handiwork, 
become a “fair carpet for thy feet to come and go”–
at least from time to time?

Diane has lost more control of her head and facial expression.  Not much writing at all now.  Mainly projects and reliance on spelling in order to communicate. [Click here or here to learn more.]  When it works, it’s happy.  When it doesn’t, things get really tense.

No more head control means the doorbell signal [on the side of her head rest] is useless for the wheelchair.  Whoever is with her has to scan her face routinely for signs of need to communicate.  It’s scarier than before.   It’s possible to walk away without clear communication happening.  Or, to totally miss her silent signals for help.

The most difficult adjustment of all for me was learning the routine and skill of scanning Diane’s face for signs of pain, discomfort, or need to communicate.  Her face itself could still send signals, but they were useless if no one was watching.

Yesterday I asked a question; today I have an answer.  Not the one I was looking for, but it’s a good start.  I’m sure there are other examples.  But here’s how this one works for me.

In her ALS-shaped body, IF I was willing to pay attention, to be ready, awake, and expectant, it was more than possible that God might come calling for me–with and through Diane’s fair, beautiful ALS-shaped body.  But I had to watch.  I had to be alert.  Ready to see God visiting me by way of God’s handiwork, though sometimes it didn’t look like handiwork, much less a place where God might be looking for me.

Yet Diane was there, and so was God.  Waiting with and through Diane.  Waiting for me to recognize more than seemed to be in front of me.  Waiting to remind me what really matters in life.  To waken “love, fear and boundless desire” to know and enjoy both Diane and God in new ways.  Not familiar or comfortable ways, but unexpected ways through unexpected circumstances.  Surprised by God in the midst of what feels and looks like relentless winter. To say nothing of weariness.

© Elouise Renich Fraser, 15 January 2015