Telling the Truth

connecting the dots of my life

Tag: ALS

Heavy | Mary Oliver

Here’s a lovely, if difficult poem from Mary Oliver. It’s about death. It’s also about learning to be a survivor. I’m posting the poem as a tribute to Diane (Sister #3), born on this day, Easter Sunday 1949 (leap year). Diane died in February 2006 after living more than ten years with ALS. My comments follow.

Heavy

That time
I thought I could not
go any closer to grief
without dying

I went closer,
and I did not die.
Surely God
had His hand in this,

as well as friends.
Still, I was bent,
and my laughter,
as the poet said,

was nowhere to be found.
Then said my friend Daniel
(brave even among lions),
“It’s not the weight you carry

but how you carry it—
books, bricks, grief—
it’s all in the way
you embrace it, balance it, carry it

when you cannot, and would not,
put it down.”
So I went practicing.
Have you noticed?

Have you heard
the laughter
that comes, now and again,
out of my startled mouth?

How I linger to admire, admire, admire
The things of this world
That are kind, and maybe

also troubled—
roses in the wind,
the sea geese on the steep waves,
a love
to which there is no reply?

© 2006 by Mary Oliver
Thirst, pp.53-54
Published by Beacon Press

Dying isn’t for the weak; neither is surviving. Not as victims of cruel fate or the current pandemic.

In the end, we often don’t have any choice but to live with what we’ve been given. True, we might prefer to die. But Mary challenges us to welcome grief and the opportunity to let it shape our lives for the better, without destroying them.

I also hear Mary inviting us to give ourselves time. Enough time to be surprised at ourselves when laughter and joy sneak in unannounced.

In her case, Mary unexpectedly discovers herself seeing nature differently. Not just as shows of beauty, but as survivors. Like us, the roses and sea geese also live out their love of life in the midst of harsh winds or steep waves.

What could be more invitational and healing that that? Not as a pill we take, but a possibility we choose to embrace.

Elouise

© Elouise Renich Fraser, 17 April 2020
Roses in the Wind painted by Anne Costello
Found at saatchiart.com

dispensable? | today’s thoughts

Yesterday I wrote about the dilemma of being a senior citizen during this pandemic. The issue is about ending lives in order to focus more care on younger people. As much as I despise pitting older people against younger people, the dilemma is real. A reader left a comment based on her own experience. Here’s a slightly revised version of my response.

Thanks for this comment. I hear your dilemmas, some of which are my own as well. I’m fairly clear about end of life decisions when we’re in our ‘normal’ mode (whatever that is!). If the issue is about doing “everything we can to extend life,” without meaningful markers to let us know what we’re after, or when we’ve arrived, I have no desire to extend my life.

I watched one of my sisters die of ALS — according to her own clear markers. They had nothing to do with the ventilator that helped keep her alive for ten years. They had to do with a simple question only she could answer. Am I still able to communicate (by any means possible) with my family and friends? If not, give me comfort care and fluids, but no meds or liquid food through my feeding tube.

Nonetheless, this coronavirus pandemic has shaken my confidence in nearly all my carefully worded directives. Right now I’m thinking that, with regard to the current pandemic, the marker might be the need for a ventilator. Then again, I haven’t put this in writing, or communicated it to those who will need to speak with and for me. I don’t believe that fighting death at all costs is helpful or fair to others. As a Christian, I believe Jesus died ‘voluntarily.’ I do not, however, believe that his decision was without angst or fear.

Your last line is so important: “However, we need to keep asking the questions to stay in the moment and on the right path with our faith in our Creator.” To that I can only say Amen! Not an easy path. I pray you’ll find some clarity for the present moment in history.

Please feel free to add your voice to this conversation.
Elouise

© Elouise Renich Fraser, 27 March 2020
Image of social distancing found at nytimes.com

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

Writing about Life and Death

Dear Friends,
I have death on my mind these days. Not without life. Yet it’s different, this discipline of writing about death.

Just over a week ago my Fitbit One fell into the toilet! No kidding. No resuscitation. And no easy replacement. I’ve used a Fitbit for approximately ten years. Never once did it jump into the toilet. Until now.

Alas! My faithful Fitbit One is no longer sold or actively supported by Fitbit. So I’ve moved to a lowly pedometer. It won’t produce the same data and analysis. It will, however, get me off my butt and moving every day.

My latest waking dream, posted with a poem called Portals, was also about big change. In the dream, I’ve left my familiar world and just arrived in a different space. It looks and feels like a transitional space. Think of an international airport only nicer. A place where people of all ages, races, nationalities and ways of life are mingling. I’m a beginner, yet at ease and happy to be there.

Here’s something else that’s happening. I’m playing the piano more often and enjoying it more. In the dream I find a room brimming with children singing, and adults out in the hallway singing along with them. I didn’t want it to stop.

Which reminds me of my visits with Diane. Each time I visited, I cried when it was time to leave. Every visit held moments of beauty, pain, and deep connection. Saying goodbye was painful. I didn’t want to leave because Diane might die before I returned.

That’s similar to the way I feel about playing the piano. It’s a sign that beauty hasn’t vanished from my life. Nor will it. Just as long as I stay ‘close to the bone’ and keep telling the truth. Even if I’m not able to play the piano anymore.

In the meantime, I want to know how all of this will play out in my writing. In Bird by Bird, Anne Lamott says this:

The very first thing I tell my new students on the first day of a workshop is that good writing is about telling the truth.

© Anne Lamott, Bird by Bird, Some Instructions on Writing and Life, p. 3, published by Pantheon Books in 1994

One thing is certain. Each of us will die sooner or later. I want to walk and write toward death truthfully and with intention, open to voices of others, and especially open to my own voice and experiences along the way.

Thanks for listening and visiting!
Elouise 

© Elouise Renich Fraser, 24 May 2019
Photo found at messynessychic.com

Conversations on Loving and Dying

Diane is on my mind these days. Sister #3 of four daughters. She died of ALS after 10 years of learning to live with it and with death. During this time I visited her regularly, and witnessed a chain of small and large deaths. Game-changers.

Muscle movement died off bit by bit. Some capacities disappeared overnight. This was death in life, taken in a thousand small and large bites. When she died, she was barely able to move her eyes and eyebrows—keys to communicating with family members and caretakers.

What does it mean to die? I don’t believe Diane died just on the day she never woke up. She died a thousand times over on the way from here to there. She learned to embrace and live with death. Sometimes with gusto. Other times with anguish and anger.

Recently D and I started reading and talking about Walking Each Other Home: Conversations on Loving and Dying. It’s by Ram Dass and Mirabai Bush. Ram Dass had a stroke about 20 years ago, and is still learning to live with death. His friend Mirabai Bush spent time with him talking about death, and then helped bring this book to life.

The book invites us into conversation about questions we often ignore. Especially conversation with the person we’re most likely to be with when we die. Call it getting ready to die by learning to let go of what holds us back.

Recently I wrote a poem about numbering my days. It takes wisdom to number our days. I can’t pretend death is way off in the distance. I don’t know when it will come. I do, however, know I need wisdom to make choices. What will I do and not do right now, given the time I have today?

Diane is my heroine for this kind of wisdom. She numbered her days. She decided what she would and would not do in the time she had left, and what would signal the end—time for comfort care until she died.

I don’t have ALS. Still, I have fewer years to live today than I had yesterday, and at least two health issues that will likely contribute to my death.

I’m relieved I’ve begun these conversations with D. They aren’t always easy. They are, however, always productive.

As always, thank you for visiting and reading. I’m grateful for the opportunity to write from my heart. No matter where it finds me on any given day.

Elouise♥ 

© Elouise Renich Fraser, 20 May 2019
Image found at amazon.com

Within my Garden, rides a Bird

Here’s a fun riddle-like poem from Emily Dickinson, followed by my note to Emily. Today is the anniversary of my sister Diane’s birthday. She lived with ALS for ten years before dying in 2006. Diane was 61 years old. One of her greatest joys was watching hummers feast in her back yard garden. A garden created in her mind, and in reality by her family and friends. A magical place where anything could happen.

Within my Garden, rides a Bird
Upon a single Wheel –
Whose spokes a dizzy Music make
As ‘twere a travelling Mill –

He never stops, but slackens
Above the Ripest Rose –
Partakes without alighting
And praises as he goes,

Till every spice is tasted –
And then his Fairy Gig
Reels in remoter atmospheres –
And I rejoin my Dog,

And He and I, perplex us
If positive, ‘twere we –
Or bore the Garden in the Brain
This Curiosity –

But He, the best Logician,
Refers my clumsy eye –
To just vibrating Blossoms!
An Exquisite Reply!

c. 1862

Emily Dickinson Poems, Edited by Brenda Hillman
Shambhala Pocket Classics, Shambhala 1995

Dearest Emily,

What a fun riddle! Of course the answer is obvious, at least to your Dog. What isn’t so obvious is how your nimble mind creates miniature stage productions from fleeting, everyday realities.

I don’t remember one single occasion when a tiny hummer elicited in my mind’s eye a complete and detailed account of what was going on before my wide-open eyes—all in the space of 5 seconds max.

I see a gorgeous hummingbird. You see an entire stage production played out impromptu on the canvases of your Garden and your fertile imagination.

Actually, spectacular is too weak for whatever is happening in your imagination. And then there’s your super-observant Dog who figures it all out!

I fear we’re losing our capacity to see things with lively imagination. Not just in the natural world, but on the streets of our towns and cities. And in each other.

What might happen if we could be inquisitive young children again? Or get caught up in the wonder of other human beings, or the keen observational skills of our pets?

Just a note to let you know how much I enjoyed your poem. Happy Wednesday to you from me, your erratic pen pal and sometime follower.

Elouise

©Elouise Renich Fraser, 17 April 2019
Hummingbird and Roses artwork found at pinterest.com

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

Trembling Heart | for Diane

Trembling heart sits on edge
waiting.

Unseen by human eyes
she calculates in vain
the cost of knowing
or not knowing
looking for solace
if not release.

Piece by painful piece
mortal heaviness
strips proud bravado
as bare as truth standing defenseless
in the dock of human finitude,
calm, grieving and grateful.

***

Today I had a checkup with my electro-physiologist. I sat waiting, trembling inside, wondering what the doctor might discover in the data from Lucy, my pacemaker.

I toyed with the possibility of not keeping these appointments. After all, for generations before me there weren’t gadgets that could make visible the rhythms of our beating hearts. Maybe there are things it’s better not to know.

When I got home, I was still teary and pondering all this. I was also aware that February marks the death anniversary of Diane, my Sister #2. She lived ten years with ALS, enduring the loss of almost everything we take for granted as human beings. I’ve posted multiple pieces about and from Diane. You can read them by clicking on the category Dear Diane, at the bottom of this post.

I wrote this poem based on my experience today at the doctor’s office. However, it also applies to Diane’s situation. I’m proud to offer it in honor of her courage, good humor, honest emotions and struggles with God and with herself. Though she lost almost all voluntary capacities (such as speech and voluntary muscle movement), she never lost her mind or her great heart.

© Elouise Renich Fraser, 7 February 2017
Response to WordPress Daily Prompt:
Tremble

The Most Important Truth I’ve Learned | from Diane

God Loves Me to Pieces

Sadly, this is the last of Diane’s children sermons. It’s dated 11 February 1996–just months before she left her position at the church due to increasing ALS challenges. I’ve put off publishing it–partly because I don’t want to stop hearing her voice.

As one of her sisters, I know how difficult it was for us sisters to ask for help. You and I aren’t little gods or goddesses, sent to live perfectly serene and lovely lives. We’re God’s beloved daughters and sons, sent to live in the muck and mire that comes with mountaintops and valleys. We won’t make it by ourselves. We need each other, not just God.

We also need to know the most important truth Diane has learned. So here it is–in case you haven’t already guessed.

11 February 1996

Well….Good morning, folks! This is a special week! There’s a big day coming up Wednesday. Do you know what it is?

…Right! Valentine’s Day! After first worship somebody told me that’s an awfully sneaky way to remind your husband of Valentine’s Day! But what can I say? It works!

Tell you what. This week has another special day. At the early service Clay [Diane’s husband] nearly fell out when I said it’s our anniversary today!

He knows very well that our wedding anniversary is in June! [laughter] June 12! [more laughter] 25 years this year! [more laughter] Okay! Let’s see if he forgets…! [even more laughter]

Actually the anniversary today is special for me and my husband and our family. Ten years ago today our family joined this church. How about that? So it’s an anniversary for us today.

I’ve been thinking about important things that have happened during those ten years. And especially about the most important thing I’ve been learning the last ten years. I thought of something that reminds me in some ways of Valentine’s Day.

On Valentine’s Day we like to tell people that we love them, and make sure they understand how much we love them. Guess what? For the past ten years the most important truth I’ve been learning about is how much God loves me. That’s a super important thing to be learning.

In fact, when I think about the most important thing I want you boys and girls to learn about when you come to church, it’s that God loves you. Each one of you, and all of us together!

God loves each one of us. I’m learning it doesn’t matter what I do; there’s nothing I can do that will make God stop loving me. And there’s nothing that can happen to me that will separate me from God and God’s love for me.

When you come to church and to Sunday School week after week, you learn a lot of things. I think the most important thing that you could learn is that God loves you. So when you think about Valentine’s Day and about coming to church, I hope you’ll remember that it’s not just people who love us. God loves us, and God loves me no matter what. Let’s pray together and tell God thank you for that.

Thank you, Father, for these boys and girls who are here with me this morning. Thank you that they’re in a place today where they can be learning how much you love each one of them. I thank you for the way that you’re teaching me that truth as well, through this church and through other experiences of life. I pray that each of us will understand more and more the truth that God loves each of us, and that nothing any of us does can change that love. Even better, nothing that happens to any of us can separate us from you and your love for us.

These things we pray in Jesus’ name, Amen.

© Elouise Renich Fraser, 26 September 2015
Image from http://www.partiallyperfection.com/god-loves-me-to-pieces/

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