Telling the Truth

connecting the dots of my life

Category: Diane

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

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 Best Boss Ever – Labor Day

Griswold Letter to ERF

This morning I woke up thinking about My Best Boss ever: Erwin N. Griswold, Dean of the Harvard Law School, and Solicitor General under President Lyndon Johnson. I worked for him at Harvard Law School for three short years, my first job after D and I married in September 1965.

Most of all, I thought about the letter Mr. Griswold wrote to me. It’s pictured above. A letter totally unlike any letter my father wrote to me. I’ve added a typed version of the text at the end of this post.

Mr. Griswold became my employer at the beginning of my marriage to D in September 1965. We’d just moved from Savannah, Georgia to Cambridge, Massachusetts. We didn’t know anyone. D began a graduate program at Harvard, and I needed a job.

I walked over to Harvard and filled out a form. Mr. Griswold’s office called me and I answered. The best boss ever, though I didn’t know it back then. After three years, I resigned to give birth to our first child.

So today I’m thinking about baby Marie, and how to get in touch with her first 10 months of life. That’s 10 months before The Intruder, my father, arrives on the scene. I want a cloud of witnesses, not to me as I am now, but to me as I’ve always been. I’ve already identified Diane, Sister #3 who died of ALS, as a witness, even though she was born later than I.

This morning I realized I have a strange surrogate father in Mr. Griswold. Why? He wasn’t simply the Best Boss Ever. He was like a father to me, though I didn’t realize it back then.

You can see this in the letter at the top (quoted below). His note stands out for reasons I can’t even explain, except for this: Mr. Griswold saw, named and celebrated the 10-month old child in me, now grown up. The Intruder didn’t destroy me.

Today is Labor Day here in the USA, a day to celebrate workers. I’m proud to have been a worker, and proud to say I worked for Mr. Griswold as one of his secretaries.

Below is the text of Mr. Griswold’s handwritten note.

The Solicitor General, Washington

Erwin N. Griswold, August 12, 1968

Dear Elouise,

I am sorry that I could not be at your farewell party at the Law School, and I do want to send you this note in honor of the occasion.

In all my years at the Harvard Law School, I expect I had close to twenty girls working for me. All were good, some were better, a few were extraordinarily good, indeed, and of all of them you were the best. Your ability was of the highest order, your intelligent contribution to the work was unexcelled, and your calm and matter of fact and unperturbed approach was unique. I was blessed in many ways at the Harvard Law School, but that I should have had you to work with the last two years was more than I deserved.

If there had been any prospect that you could stay on, I would have done all I could to push you on and up. You were worthy of the highest recognition—and always, without fail. It was a very satisfying experience for me and I cannot begin to tell you how grateful I am.

Now you go on to a new phase of your life where I know that you will excel, too. But as you go on, I hope it will give you some satisfaction to know that I thought your were superlative—both as a secretary and as a person.

With best wishes to you and David, and my very great thanks.

Erwin Griswold

©Elouise Renich Fraser, 3 September 2018

Easter Lilies and Justice

Easter Lilies

Dear Diane,

Easter Sunday always reminds me of you. Not just because you were born on Easter Sunday in 1949, but because the Easter lilies at church always take me back to your funeral service and heaps of Easter lilies around the casket at the front of the church.

Today was no different. I walked in, saw the Easter lilies and tulips, and dissolved into tears as we sang the first hymn. It all came flooding back, along with a story Dad told me when he was in hospice care.

The story was about you and his flower garden in our back yard. Maybe you remember it. That was when we lived on the river. The flower garden had tons of flowers, including Easter lilies and Dianthus, all planted by Dad. He used to say the Dianthus were there because they reminded him of you.

Dianthus

One day Dad noticed that some of his special Easter lilies were missing from his flower garden. When he went back into the house he found them–in flower vases and glass jars here and there!

It didn’t take long to find out you had done this dastardly deed. He said you listened quietly without tears. Then as you turned to walk away you asked, “Where are the flowers for the children?” Cut him to the quick, he said. And I have to admit, he had tears in his eyes as he told the story.

Do you remember that square patch of flowers near the rear of the back yard? It wasn’t very large. Maybe 5 feet wide. It had posts with twine supports for some of the flowers. Most were bright zinnias.

Dad told me, with tears in his eyes, that he planted that flower garden just for the children. We could pick them anytime, as many as we wished. All because you had the guts to ask the most important question of all. “Where are the flowers for the children?”

Today I wonder the same thing. Sadly, we’ve gone downhill when it comes to things for the children. Flowers for the children tend to show up after children or teenagers are killed with guns. Survivors are asking all of us so-called grownups, “Where are the safe places for the children?”

That’s another subject, except for this: It takes guts to stand up and fight for the rights of children and young people. I’m rooting for the children and young people.

Love and hugs, plus Happy Easter and Happy April Birthday—not that you’re counting anymore!
Elouise

©Elouise Renich Fraser, 1 April 2018, adapted from an earlier post
Photo credit: wallpapersup.net (Easter Lilies); robsplants.com (Dianthus)

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

%d bloggers like this: