Telling the Truth

connecting the dots of my life

Tag: ALS

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/

Birthday Gifts for Jesus | from Diane

Christian-gifts-heart-decoration-crafts-jesus-christmas-gift

It’s Christmastime 1995, just days before Diane received her ALS diagnosis. She’s already challenged because of unexplained muscle loss.

When I transcribed this children’s sermon I was surprised to hear the words she whispered at the end, right after her children’s prayer. The microphone was still turned on. I could hear that she already needed some of that kindness and extra help she just talked about. A telling moment.

17 December 1995
You can see I’ve got my bag here that says I’ve been doing heavy-duty Christmas shopping! Actually some of it isn’t just for Christmas. You might call it birthday shopping.

Is there somebody’s birthday on Christmas?  Whose?  Oh, yes, it’s Jesus’ birthday! I was just testing to see if you remembered.

So I did some birthday shopping for Jesus.  Let me show you what I got.

  • Here’s one of the items–a box of Cheerios.  Ever seen one of those?  Do you want one of those under your Christmas tree?
  • Let’s see something else. Here’s a jar of peanut butter.  Peanut butter?  Uh….
  • Let’s see. Sugary Sam Golden Yams!  Mmm.  A can of yams!  I can tell you love ‘em.
  • And some cornmeal?
  • Now this one I do like!  Instant oatmeal.  This is the creamy variety.  That’s the kind I like.

So that was some birthday shopping for Jesus! Of course Jesus really doesn’t need to come and eat any of this.

But he told us in the Bible that if we do a kind thing for someone who needs it–if we provide food for someone who doesn’t have enough food, or–I could have bought some clothes, because he said if we provide clothes for people who don’t have warm clothes, or don’t have the clothes they need–If we do it for someone else who needs it, it’s the same as doing it for him!

How about that?  If I want to buy gifts for Jesus, all I need to do is go get some gifts, and give them to somebody who needs them!  Or even show some kindness to someone who needs a little kindness.

There’s one other thing down here in the bag. One of these. You know what it is? That’s one of our Christmas offering envelopes that we use for giving a missionary offering.  That’s another way to give a gift to Jesus.

Why? Because the kindest thing we can do for another person is to make sure they know about Jesus, and his love for them.  And that’s a birthday gift for Jesus, too!

In a couple of weeks we’re going to collect more food for folks in our area who might need some. So I brought these things today, and I’ll make sure they get in with all the food others will bring. Maybe some of you will, too.

Did you know we can give gifts to Jesus all year round in this way? You do? Good!

I like having this really neat way to give Jesus gifts for his birthday! Some of you already brought Christmas gifts that went to a children’s Bible club yesterday. That’s another way of giving gifts to Jesus this Christmas.

Of course I’m doing shopping for my family, too. They don’t have to worry!

But here’s my point. Let’s be sure to include some shopping for Jesus. Not just for our families. We can give food or clothing or even kindness to someone who needs it. Let’s pray together.

Thank you, Jesus, that you’ve told us a good way to give you gifts that show our love for you.  We pray that at this special time of year and the rest of the year we’ll remember to do kind things and give food and clothes to other people because we love you, and want to please you. And we pray that because we do those things, more people will know that you love them, too. These things we pray in Jesus’ name, Amen. 

[Whispered into the mic, as Diane is getting up from the platform stairs: “I’ve got my helper!  Thank you.” Diane’s helper was either her husband, who was almost always with her on Sundays, or a staff member or friend who’d agreed to help her stand up after the children’s sermon.]

© Elouise Renich Fraser, 29 August 2015
Image from aliexpress.com

Help is Near–Anytime, Anywhere | from Diane

mobile-phones-uses

1995 Mobile Phones, from suggestkeyword.com

By March 1995, Diane has undiagnosed ALS symptoms. Muscles that are here today may disappear overnight. Whatever this is, it’s bigger than post-polio syndrome. Connections with family members become a top priority. Anytime, anywhere.

March 19, 1995

Do you know what this is? It’s a telephone! Usually I don’t bring it to church. But if I need to make a phone call, I like to have it handy.

Here’s the really neat thing about it. I don’t have to be at a certain place to make a phone call! I can be anywhere I want. In my car somewhere. Shopping in the mall. Maybe in the grocery store—more often in a restaurant! I could even make a phone call in the church. I haven’t done that yet, and don’t plan to. But I could!

This phone reminds me a bit of talking to God.

  • Do I have to be in a special place to talk to God? No!
  • Do I have to be at church to talk to God? No!
  • Could I talk to God in my bedroom, all by myself? Yes!
  • How about if I’m on vacation like a lot of people are this week? Yes!

I can talk to God anywhere I go!

Here’s another great thing about this phone. Suppose somebody wants to call me when I’m not near the usual kind of phone. Maybe I’m out in my car, or doing some of that shopping in the mall. Can they call me there? Yes!

My family knows the number for this phone, so that when they dial me, it rings. Most of the time. Sometimes I don’t turn on my phone, so they can’t reach me! And sometimes my husband will ask, “Where were you, and why wasn’t your phone turned on?”

In fact, no one can reach me if I don’t turn my phone on. Which reminds me of something else about talking to God.

Sometimes God wants to talk to me, and I’m not listening. It usually happens here at church when the preacher is preaching, or when  I’m reading the Bible, or maybe when I’m listening to a Sunday School teacher. Those are all ways God talks to us. Sometimes I know I’m not listening.

So this little phone reminds me to stay turned on so that when God wants to talk to me I’m listening, and I can hear what God has to say to me.

I knew a child (not one of my kids!), who once told her mother, “Yes I hear you, but I’m not listening!”   Sometimes we can be that way with God, right now and as we get older. Sometimes we really don’t want to hear what God is telling us. So sometimes we can just turn God off the way I can turn my telephone off.

So I ask God to help me to be a good listener, and to keep my “on” button turned on, so that whenever God wants to talk to me, I’m ready to listen.

Sometimes the batteries on my telephone run down, or there may be other problems with the phone. But when I talk to God, I don’t need to worry about any of that! The batteries never run down and I’m never too far away. I don’t even have to worry about monthly bills coming later.

That’s because God set it all up! It’s a free call anytime of the day! Whenever I need to call! And anytime I just want to talk with God, because God is a good friend who loves to have us call and talk.

Let’s pray together.

Thank you, Father, that even without a special device or telephone, we can talk to you anytime, anyplace, no matter what’s going on.  And you hear us.  Thank you for being that kind of listener for us.  I pray, Father, that when you want to speak to us, we’ll be good listeners, too, and be able to hear what you’re saying to us, and learn the things that you want us to learn.  Be with us in church today.  If there are things you want to say to us today, I pray that we’ll be good listeners, and hear everything that you want us to hear today. In Jesus’ name we pray, Amen.

© Elouise Renich Fraser, 22 August 2015
Image of 1995 Mobile Phones from suggestkeyword.com

Detailed Plans for My Life | from Diane

blueprint_by_love1008

It’s July 1991. Diane’s sermon for the children is a foretaste of what’s coming down the road. It’s difficult to diagnose ALS. Small physical losses may be due to other things. Yet each loss invites her to reconsider the detailed plans for her life. Read the rest of this entry »

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