Some things I don’t miss, some I do| Dear Diane

by Elouise

Dear Diane,
I’m going first today! As far as I know, I don’t have any more of your written pieces for family and friends. I know the last three were slightly out of order. But not by much. I’m grateful you gave me permission to make them all public.

This piece from you seems a fitting place to draw a line. Your life with ALS didn’t end until February 2006. Nonetheless, it seems this piece rounds off your others pieces.

I’m still learning how your life with ALS changed my life. Right now I’m clear about this:

You showed me how to compose a life–
how to write it,
weave it,
pick up the scattered remnants and
make something of them

When I began visiting you, I was writing Confessions of a Beginning Theologian. Now I’m visiting you again. This time I’m composing my life daily in this blog. Following your example. Consciously and unconsciously. The way you did it.

One day, one written piece at a time. Not everything, but enough. More than enough to let us know who you are and how your life with ALS is helping you and us understand the woman you are. Not ‘that woman with ALS,’ but Diane.

Your strategic use of language stands out. Partly because ALS forced you to choose words carefully. But that’s not the only thing happening. You take swirling thoughts and emotions and reduce them to a handful of words and examples that clarify your life from your point of view. They also challenge and inspire me as a reader. You don’t just describe what happens and doesn’t happen. You show why it’s important, why these sometimes mundane details matter.

I always thought my life was boring. What people saw outside of what happened at home might seem ho-hum. But what happened at home and inside me was not. That’s what I need to keep in focus. Every sister in our family was different. This is my story, told my way. I learned that from you. Thanks for cheering me on and sharing a tear or two.

Love and big hugs,

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Some things I don’t miss, some things I do

I get a free ride now in terms of household responsibilities. No one expects me to ever wash another load of clothes , scrub another toilet, or clean the house for company. (Whenever my kids saw me with the vacuum, they wanted to know who was coming!) And there are advantages to retirement. No more searching for the right person to fill gaps in the leadership roster, no more phone calls about perpetual leaks in a new building, no more thorny personnel issues, no more computer bugs in critical but antiquated programs, and no more getting up early for another week of Vacation Bible School.

My situation also brought some unexpected losses. I never thought about the importance of being able to scratch where it itches, or swat a mosquito feasting on my neck. The wrinkle under my hand in bed was unnoticed until my hand didn’t move for eight hours. I thought I would always enjoy sitting in our back yard which family and friends have beautifully landscaped. But the enjoyment is limited to what’s in my field of vision with head tipped back, unable to look around.

I want to sing again in church. I miss feeling I’m in the middle of the action, able to have input on decisions on my old turf. I miss being able to jump in and pop off in a lively conversation with friends. I can no longer go where they are or join them for lunch. I miss my friends.

I wish I could help my dog Snickers into my lap, scratch her sweet spot, tell her to hush. I want to give my kids a hug, my future son-in-law too. I long to stand and embrace my husband face to face, to return his kiss or initiate a touch.

The list seems endless. Do I still feel important and influential, enjoy relationships, know I’m loved, want to live? You bet.

June 2000

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© Elouise Renich Fraser, 12 March 2015