Telling the Truth

connecting the dots of my life

Tag: ALS

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 »

For Children Only, from Diane

1958 Victory Drive, Diane, Judy and neighbor3

Neighbor, Diane and Sister #4, Summer 1958

Many of you know that Diane, my Sister #3, lived with ALS for ten years before her death in 2006. I’ve already completed a series of Dear Diane letters as part of this blog. I did it because I was starving for sisterly conversation. The kind not allowed in our house with four daughters and no brothers.

I’ve missed that interaction with Diane, and have wondered how to fill the void. I believe her voice is important. She has a strong and somewhat different angle on Telling the Truth.

Near the end of her life, Diane gave me access to most of her writing. I haven’t begun to uncover all the gems—and may never be able to do that.

However, along with her writing, she gave me a set of cassette tapes. You know. The old-fashioned kind.

The tapes were recorded at her church every Sunday. On several Sundays, when the pastor was away, Diane was the minister for the day. That meant she welcomed people, gave the pastoral prayer, and, most fun for her, gave the children’s sermon. At her church they called it ‘Down Front Time.’

The church is large and well-attended. Their sanctuary has a semi-circular seating area. The large, curving platform holds the choir, organ and piano, and seating for ministers and the pastor, with plenty of room to spare. Steps curve from one end of the platform to the other.

When children are invited to Down Front Time, they come and sit with the pastor or minister on the platform steps. Whoever leads Down Front Time always has a bag. The children know there’s a mysterious object in the bag–the key to the topic for the day. There’s also a bit of friendly banter, sometimes for the benefit of adult children in the congregation.

I transcribed most of Diane’s Down Front Times a few years ago, but haven’t been sure how I might feature them. I’ve decided to make use of them via excerpts that get to the heart of each children’s sermon. Possibly one a week as I did with her Word for the Ones I Love.

Diane loved children and they loved her. Her quirky sense of humor and down-to-earth approach to life pulled them right in, along with all the adults listening in.

From this distance, what catches my attention most is that Diane is talking to herself, not just to the children. She’s doing her own spiritual formation work in front of them—with the simplest or strangest of objects. Yet the content isn’t simple or strange. It’s the content of life—all the things that matter most, reframed and restated for young children.

I want to be a young child listening to her along with you. So look for this soon. I’m already working on the first of her Down Front Times.

© Elouise Renich Fraser, 7 July 2015
Photo credit: JERenich, Summer 1958, Savannah, GA

What Kind of Tree Are You?

My blogging friend Bill was diagnosed with ALS in 1996, the same year my sister Diane was. His journey is different, yet his spirit has the same razor-sharp focus on what’s really important. This recent post is for all of us. Enjoy it! Then go to About Bill and read his story. You won’t be disappointed.

Unshakable Hope

Some might be disappointed, but this is not one of those quizzes like I see posted on Facebook. (There actually is one of those quizzes with this same title, but I didn’t take it because I was afraid that the results would show that I was Charlie Brown’s Christmas Tree).
tree-onlyTen or twelve years ago, let’s just say eleven, Mary and I were shopping at Home Depot. After finishing our shopping in the store, we wandered out to the garden department to look for some small trees. It was November, and most of the plants were marked down because they were making room for Christmas trees.

Mary got hung up looking at wreathes and other boring items, so I cruised my wheelchair over to go look at trees. As it turned out, there were not many trees left, and I didn’t see anything I was interested in. Just when I was…

View original post 542 more words

What’s on my mind? | Dear Diane

I just found this short piece plus two others Diane sent me via email. I’m adding them to my Dear Diane collection. For those who are new: Diane, my Sister #3, died of ALS in 2006. She wrote a number of pieces like this. Enjoy! Read the rest of this entry »

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