Telling the Truth

connecting the dots of my life

Tag: Diane

Eulogy for Sister #3 – revisited

Diane, Sister #3, is on my mind today. Diane died from ALS in February 2006. Her death was a mixed blessing. A release from imprisonment in her physical body, and a reminder that the ‘good’ life is about more than being free of catastrophic illness. Including Covid-19.

Houston, Texas – 17 February  2006

Diane directed that my remarks today be “personal, with no preachy tones.”  As I thought about what to say, I came up with only one topic that guarantees I’m being personal—that I’m not avoiding the subject Diane knows none of us can avoid when we talk about her.

Remembering Diane’s Body

Diane had a human body—loved by God
A female body:
—The body of God’s beloved daughter child
—Known to Jesus Christ as a sister for whom he died
—A female temple of God’s Holy Spirit on this earth

A one-of-a-kind body:
—Created and sustained by God
—Loved and nurtured by God’s ministering servants here on earth:
——Her husband, two sons and one daughter
——Her large, extended biological family
——Her church family
——Her nursing family
——Even the family collection of dogs

Diane’s life was shaped by bodily infirmity.
—She would hate that I just used that word!

Diane refused to think, act or behave as a person identified by an “infirmity.”
Yet the truth is simple:
—Diane’s life was shaped by loss in her left arm due to polio.

From a parental point of view, Diane’s weak arm was cause for protective measures.

From Diane’s point if view it was cause for excelling in whatever she supposedly couldn’t or shouldn’t do.

Not only would she do all these things,
She would do most of them better than any of us, things like
—Riding a bike, swimming and playing basketball
—Sewing dresses and suits
——not hankies and curtains, but fancy dresses, and suits with tailored blazers
—Then there was photography, not with small, lightweight equipment,
——b
ut with the best possible equipment and attachments she could afford and lug around!

Diane developed an uncanny knack for figuring out how to carry out activities like these without compromising quality or expertise in the slightest.

She also developed an uncanny knack for taking advantage of our parents’ desire to protect her.

Only as an adult did she confess that her habit of disappearing from the house to do yard work (and not housework) was not motivated chiefly by her pure desire to help Daddy.  Rather, she knew neither Daddy nor Mother would send or call her back inside the house for the latest instruction or practice in vacuuming, dishwashing, dish-drying, table setting, ironing or putting clothes away.

To us, Diane’s body was both normal and different—though it all felt pretty normal most of the time.  Certainly not life-threatening.

Then each of us, her three sisters, got a telephone call from Diane in January 1996.
Diane had ALS.  She was direct and clear:
—There is no cure.
—The disease is terminal.
—I’m going to need help.  Lots of help.

Diane’s left arm shaped her as a child, as a young person and as an adult.
Now Diane’s entire body began shaping her and her family,
beginning most painfully with her husband, two sons and daughter,
and reaching out to all of us gathered here today.

For the last 10 years I’ve flown down to Houston about 4 times a year to visit Diane.  But not just to visit her.  I’ve come to witness a journey—Diane’s very personal journey with ALS.  A journey that relentlessly put Diane’s physical body at the center of attention.

As young girls we weren’t encouraged to pay much attention to our bodies. 
Bodies were a necessary but usually uncomfortable necessity—especially female bodies.  Now, with ALS, Diane was consumed by what was and was not happening in her body.

She suffered losses beyond comprehension—most in fairly rapid succession over a period of years, starting with physical losses such as mobility, ability to care for her own personal needs, eating and swallowing, ability to speak on her own, and breathing. 

She also suffered loss of her position here at the church:
—Loss of her dream of being ordained
—Loss of work and personal relationships as her body more and more seemed to intrude as a difficulty or a problem to be solved
—Loss of time for herself or her family and friends, as personal care began gobbling up hours out of each day
—Loss of privacy:  total and absolute, with only one exception—the thoughts in her mind, which included her life with God
—Loss of little things such as swatting at a mosquito feasting on her neck (as she put it); scratching where it itches; singing in church; being in the middle of the action and making wisecracks

More painfully, she suffered loss of other things such as giving her children a hug, or embracing her husband face to face.  As a female she suffered what most women dread—loss of control over personal presentation of herself:  hairstyle, makeup, body language.  She became the subject of stares and quickly averted eyes.

Diane’s body seemed to be calling the shots.

True to who she already was, however, Diane kept showing up—fully with and in her body marked more and more by ALS.  It was as though she were saying

  • I’m still here—in my body
  • I’m still Diane—in this body
  • I am not whatever you think a terminally ill person should be
  • I am not predictable
  • I am not a saint
  • I’m still Diane!
  • I’m still here and I’m still fully engaged in living–living with ALS
  • I will be who I am—angry, frustrated, filled with anxiety, filled with human longings and everyday needs; direct and clear without being mean
  • I’m dying
  • We need to talk
  • Now

As always, nothing was too sacred for a good healthy laugh.  Especially about her body with its unpredictable body parts, behaviors and small crises:  facial movements, biting her own lip, laughing uncontrollably, head falling over from time to time, drooling from time to time.

Diane continued to be who she already was:
—Determined to speak for herself in her own words, not yours or mine
—Determined to be heard and heeded

She was still directive—now in ways that boggled the mind:
—To-do and Do-not-do lists for family, nurses, friends and strangers
—Rules for how Mom is to be driven in her new van and who gets to say when the rules are being broken (Mom, of course).
—She was still a masterful strategic planner—only now she had to figure out how to get you to do what she could no longer do, but somehow knew must be done.

As always, Diane wasn’t about to fade into the woodwork.  She kept showing up in the flesh—in her ALS-shaped flesh:  at church, in shopping malls, at weddings for her daughter and one of her sons, and even—one month ago, believe it or not, to inspect her daughter, son-in-law and granddaughter’s new home.

Diane remained insistent that she be given choices, and that her choice was the final choice:
—Clothes and accessories for church
—Medical options
—What to keep and what to discard from the kitchen cupboards
—Which movie to watch
—And how this service today would be shaped,
——including the names of all active male pallbearers
——and the names of all 25 honorary female pallbearers!

Diane made her concrete mark in, with and through her concrete, ALS-shaped body.
To deny she was among us in the flesh would be to deny her existence.

To some extent, each of us gathered here to honor and grieve her passing has been a witness.  So many of you are so full of memories.  I can’t speak for you and I won’t get preachy, but I will be confessional:

  • I’m listening, God, for what my relationship to Diane means for the rest of my life in this world you love so much.  Amen.

Eulogy delivered 17 February 2006, © Elouise Renich Fraser, 17 February 2006
Blog post © Elouise Renich Fraser, 15 April 2014

Disorder claims the winning hand

With breathless speed life takes us away
And back again to this grieving space
Where time stands still but not quite
Unfolding our own demise and deaths
One wrenching sorrow after another
Seen through the mirror of our likenesses

I thought being oldest was dangerous
When it came to death and dying
Surely I would go first followed in orderly
Succession of eldest to youngest with
Time to laugh and cry and grieve together
Built into the inevitable equation of aging

Yet disorder claims the winning hand
Changing landscapes forever through death
Or in life made more challenging through
Unforeseen clashing of genes and unexpected
Gifts of generations and the heaviness of being
Afflicted with maladies we never expected to visit

On Christmas Eve my youngest sister had a health emergency that will likely change her life, not for the better. I feel as helpless now as I did when Diane (#3) called in the late 1990s to tell us she had ALS.

As a writer, I’ve asked myself this question over and over: What is mine (and not mine) to write about?

I came up with several beginning ideas, including the theme of the poem above. That is, how strange it is to be the oldest, watching any of my younger sisters going through life-threatening health crises. In this case, Diane, who died of ALS in 2006, and now Sister #4 facing unexpected health challenges.

Thanks for visiting today. I’m slowly getting back to blogging regularly. Blessings to each of you and your families with whatever you’re facing today. Especially if it’s something about which you can do nothing but be present, supportive, and aware of what’s going on inside you.

Elouise

© Elouise Renich Fraser, 3 January 2020
Family photo taken in 1961, Savannah, Georgia

The mind is the last to consent

Or, Semi-poetic thoughts about death and dying

The mind is the last to consent –
Alternative scenarios tease us
Surely this can’t be the end
Wispy threads dangle enticements
We could try this or look into that
Prayers for miracles multiply

Cheerful faces mask sad truth —
The patient is dying, yet anguish
And well-meaning hope sometimes
Impede consent to the obvious
Resulting in further digressions
That produce even more anguish

The end is upon each of us sooner
Not later, with or without goodbyes

To ‘give in’ to death may seem to be
Callous dismissal of those we love
Or loss of hope or lack of faith to
Demand of God great things with
Or without the patient’s consent

Worse, if I’m a medical person perhaps
Giving in means failure to do my job
Even though I may agree that this
Dying person is sick unto death and
We were not created to live forever
In these temporary earth-bound bodies

My hero when it comes to dying is my sister Diane. She chose to go on comfort care after living with ALS for ten years. When she learned she had ALS, she worked with trusted people to identify what she was and was not willing to endure, and where she wanted to die—at home.

Even so, in the end she had to consent to the criteria she herself had itemized. She had to communicate to her doctors and nurses, ‘Enough is enough.’ She also had to trust that those with power of attorney would honor her wishes.

So what does it mean for me to ‘prepare’ for death? At the least, it means living each day well, insofar as I’m able. Especially when it comes to self-care.

I wish that were enough. Unfortunately, given medical structures and practices here in the USA, it isn’t. If I want to avoid getting caught in an endless search for ‘health’ or extension of life, it’s up to me to take the initiative. This includes decisions, paper trails, agreements, and work with family and friends involved with my care and wellbeing.

I can’t do this alone. I’m reading books, and have family and a few friends with whom I can talk. Yet it’s up to me. Even so, there’s no guarantee my wishes and directives will be honored. We don’t always get to choose the time or manner of our deaths.

Blessings to each of you, and thanks so much for listening.

Elouise

©Elouise Renich Fraser, 18 June 2019
Photo taken by DAFraser, Longwood Gardens, 12 June 2019

My mother’s spirit

My mother’s spirit
Came calling last night
I saw her footprints
In this morning’s snow
Precise and measured
She passed quietly
Beneath my window
Step by small-hooved step
Down the driveway
Before crossing over
Into the woods beyond
Our house asleep
And dreaming

I think they were the prints of a red fox–which reminded me of my mother’s bright red coat. She would have loved the brilliant rainbow umbrella, and the fashionable leggings and boots.

The tracks down our driveway this morning told me I’m not alone. Neither are my three sisters, each of us with our own mother-daughter relationship to ponder. Mother Eileen died in mid-February 1999, twenty years ago, seven years before our sister Diane died of ALS in mid-February 2006.

© Elouise Renich Fraser, 2 February 2019
Photo found at fiftiness.com

Ghoulish Gallery

Behold my four ghouls
Some greater than others
Designed to affright
disgust or delight

Traditional Irish Jack-‘o-Lantern (above) inhabits
the Museum of Country Life in Ireland

Modern carving of a Cornish Jack-‘o-Lantern
made from a turnip

Modern carving of a North American
Jack-o’-Lantern pumpkin
designed, hand carved and photographed
by my delightfully irrepressible Sister #3, Diane
who died of ALS in February 2006

Happy Halloween, Everybody!

©Elouise Renich Fraser, 30 October 2017
Halloween witch image found at pinterest.com
Images of Cornish and Irish Jack-‘o-Lanterns found at Wickipedia
Photo of Jack-‘o-Lantern pumpkin taken by Diane Renich Kelley
Daily Prompt: Ghoulish

A tough old hen

tough old hens

The sun is shining! I’m alive and getting clear about what to do and what not to do to help my one and only heart. Here’s a quick update just for you!

First, the good news. Read the rest of this entry »

Faculty Wife | Part 5 – Photos

1969 Oct Elouise and Diane on crutches

Fall 1969-spring 1970. I loved having Diane around during my first year as a Faculty Wife. She was a senior at the Bible College. Diane quickly became part of our social life, along with some of her zany, like-minded friends. D took this photo at the rental house just after we arrived in fall 1969.

Diane had been in Japan during the summer with a team of students doing short-term missionary service. Her bum knee (injured months earlier while playing basketball with one arm) flared up, and she returned on crutches. Now we’re trying to find a spot on the ground that’s flat enough to keep her steady while we eat lunch outdoors.

Perhaps you noticed how much things have changed at the Bible College. Both of us have real knees that actually show. No more covered knobby knees! Or skirts below the knees.

Over the Christmas break in 1969, we moved into our new house and enjoyed a rare snowstorm! See below. That’s our son in his winter gear, intended for Boston winters. Which, of course, this is not. The snow was probably gone within a few days.

1970 Winter in Columbia SC yard3

Early in spring 1970, Diane asked if we would host her 21st birthday party in mid-April. Of course we would! Given her creative streak, she wanted something memorable. No silly games. Just challenging and fun activities. Most of these women had either participated with Diane in one of her crazy dormitory practical jokes, or had been a target. They didn’t like dull.

So for the main activity we came up with a giant finger-painting session. It would have to be on the floor. On butcher paper that D and I taped together and cut into a large circle. Something to treasure forever! We mixed up ample fingerpaints, and I baked goodies galore plus a birthday cake (no pictures, sadly).

Here are two photos of the main art event.

1970 the big fingerpaint project with Diane Renich and friends 2

1970 the big fingerpaint project with Diane Renich and friends
I think Diane is in the lower right-hand corner of the first photo. About 12 women came.

In the background of the second photo you’ll see our son, now about 1 ½ years old, looking on with longing and apprehension. Yes, he’s been told this is for the women, not for him! How cruel can it get? See his thumb in his mouth? He’s definitely fighting the urge to jump in.

I can’t remember how it happened. One minute he was holding back. Then the women took pity on him. Someone took his shirt off, and the next minute he was all over that work of art and the women were just loving it! As was he.

So was I, and then I wasn’t. It was fine as long as he stayed on the edge and dabbled. But crawling onto the great work of art was the last straw! D saved the day. He grabbed Son  before he got to the middle, and took him straight to the bathtub. I grabbed the camera and followed. Don’t ask me how it got on his back. I don’t want to remember.

1970 the big fingerpaint project Scott's aftermath

Then there were super happy visits to Diane’s dorm room. Diane took this photo during one of his babysitting visits to her dorm room. He’s sitting at the foot of her bed.

1970 A happy rocker Scott

Our son doesn’t really get it that there’s an intruder coming soon. But first I need to backtrack a tiny bit.

To be continued….

© Elouise Renich Fraser, 10 August 2015
Photo credit: Elouise (son in bathtub), and DAFraser (all others), 1969 and 1970

Hide & Seek: The game of life | Dear Diane

Houston, 1998.  Diane is slipping away from her ‘normal’ non-ALS earthly life.  Here’s some of what I experience when I visit in January and April. Read the rest of this entry »

Starving for Sisterly Conversation | Part 3 of 3

January 9, 1996, 9:00pm, Philadelphia
The phone rings.  Hi.  It’s Diane.  I’m not well – no easy way to tell you – not post-polio, but ALS – I’m going to need help, a lot of help.  I hang up and go downstairs, weeping as I tell my family the news.

January 30, 1996, late afternoon, Houston
I walk off the plane and see Diane standing in front of a pillar.  Small floral print on navy dress, empire waist and smocked bodice – ivory stockings – very pretty – gold chains – hair highlights in blond – stoop-shouldered and slow. Read the rest of this entry »

frozen in memory

frozen in memory
erupting without warning
dear earth gasps for air

* * * * *

haunting
sounds of
choking
escalate

no words
no breath
no time Read the rest of this entry »

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