Dying Alone With a Tiny Rainbow in the Sky

My eyes are welling again and I was wondering if I could just tell you something? I don’t feel like I can get anything else done unless I get it out and separate it from the rest of life which will eventually blur together. 

I think I said goodbye to two friends yesterday. They came and went during the conversation, in and out of sleep or consciousness-it’s not always easy to tell. But they were there long enough to tell me I was a beautiful person and that I’ve been a wonderful friend, and I told them the same thing. 

For me, it’s a little easier to be with the dying when they are closer to death. When they can no longer look into your face and tell you that your eyes are beautiful and they love you. When they express their love and deep appreciation for knowing you, you can’t pretend it is one-sided or that it’s all just part of the job. But the hardest parts are also the best parts.

It was easier earlier in the week when I got to be alone with a dying woman I’d never met before. Her spirit felt far away and her body was trailing close behind. I sat at her bedside for a couple of hours—praying and singing and feeling as observant and objective about death as I’ve ever been. There was no conversation nor grief to distract me from bearing witness to the sacred act of dying—the rise and fall of peaceful breaths with space growing gently between them…

But there was a rainbow. 

And that little rainbow reminded me that sometimes I don’t believe dying alone is necessarily a bad thing. Because how alone are we? 

There is wonder and stillness which becomes the thin place where heaven and earth meet. Death is personal and private, no matter how many people are in the room.  When my time comes, I think it will be hard for me to let go if someone is holding my hand. I feel certain I will try to stay for them, even if I’m past ready and feeling impatient. I might have to wait until they go to Whataburger or the bathroom.

But it’s not my time to die. It’s my time to write and to let you know that it’s not your time either. But when the time comes, you should know that there might be a tiny rainbow in the sky, even if no one else is around to see it. 

Darce Day

This is my favorite thing I’ve written to date.  I am a hospice chaplain.  To me, this story, this woman, our relationship, and traveling the past year with her on her journey has become the picture of everything I could hope for as a hospice chaplain. 

Yes, we can accompany people for a little or a long while, do death and moments of crisis, Scripture, music, and prayer. But, entering into the life of another for weeks turned into months, finding yourself there, adding unexpected joy, and giving and receiving an opportunity to reflect on a very hidden and private 90-year-old life has changed me.  Darce has given me permission to share it with you.  I hope you like it, too.

(A video of me reading Darce’s story to her, here…https://youtu.be/jx5tukDPZuE)

“Darce Day”

Once upon a time, there was a woman who had 90-year-old eyes and 90-year-old teeth.  

On days when she is feeling blue, her daughter cheers her up by saying, “At least you have your own teeth!”

 She passes the days reflecting on all that has been – Amazed that one who so loved golf and gardening, sailing and cooking and tennis, could be so content – looking at the sky and an occasional bird, but not really being able to see either one.

 “Have you ever thought about what it’s like to talk to someone without being able to see them?” she asks.

 

No, I guess I haven’t.  And I’m afraid to experiment in my next conversation, imagining the other person will be unable to listen at all because they can’t stop wondering why my eyes are closed.  So, I imagine it for the rest of the day, and conclude that it would be very different, indeed.

This is the story of Doris Marie Johnson.  Only she didn’t like the name Doris.  So, she changed it.  When she was seven years old.  And no one noticed.  It might have been around the same time she realized she was not “a goddamn little bastard, but a Daughter of the King!”

Whenever it was, after that, she knew she had the power to change things.  Like an “i” to an “e” in Maree.  And that Johnson could be left off altogether.  

Darce was sitting in her favorite spot, communing with God, when she had a new visitor one day.  Well, she had a lot of new visitors, but the visitor I’m talking about is me.

In that first visit, we looked at little paper bags with her artwork on them – made each day for her precious daughter to tote her lunch to school.  Even the doctor’s daughter recognized their preciousness and wanted to buy them.  But, they weren’t for sale.

Not exactly sure what, but something magical happened between lunch sacks, and whatever was said before or after looking at them.  

It was decided that only weekly visits would do, even though monthly visits from this hospice chaplain was the normal order of things.

And Friday would be the best, because Darce’s daughter had to do this thing called work.

So, Fridays at lunchtime became the high point of Darce’s week.  And Heidi’s, too.

———

Oh, my name is Heidi.  I never changed my name, but I did add an “e” to the end of my middle name for a while.  I thought Ann looked better and more sophisticated that way.  I was probably trying to be like Darce even though I hadn’t met her, yet.  

Subway turned into Taco Bell, and how can tacos taste so good EVERY.SINGLE.WEEK?!

 But, they do.

 I think it has something to do with the way I put the sauce on while she holds the taco open.  And the way all of the stuff falls out and we pick up the pieces with our fingers, and shove them into our mouths afterwards.

The large drinks were always too big and heavy, so I poured them in a smaller glass for her.  But, the smaller glass is getting too heavy, too.  

The days are getting longer for Darce.  Getting into bed at night requires heroic effort and has become a task to dread.  Fortunately, her daughter doesn’t mind lifting her tired legs up and in, and her big panda is waiting there for her when the work is done.  Like receiving prize money at the end of a marathon.

The panda helps her tell time, too.  When you’re tired and taking a lot of naps, it is easy to forget if it is daytime or nighttime.

 Well, the panda knows.  If it is daytime, he sits up on a pretty bed, with the covers all nice and neat.  

When it’s night, he lays down and waits for you.  Mr. Knightly, the cat waits on your pillow, too.

——

When every part of your body is 90-years-old, it is easy to feel like your parts are falling apart, if they haven’t fallen off completely. 

But, you know something?

You can always feel good on Fridays. 

When your daughter wakes you up and says, “It’s Heidi Day!”, you feel better.  

When you wake yourself up, and you remember it is “Darce Day!”, you feel better, too.   

When you’re 90-years-old, you can forget it is 100 degrees outside and summertime, because you never leave the house, but you know more important stuff, like what it means to be really alive.

It turns out, it is the simplest recipe around.  Only takes three ingredients.

1.     Discovering new things.

2.     Contributing.

3.     Connecting.

Learning this from Darce over a year after meeting her for that very first time, I’m beginning to understand the magic that is us.  Not that I really need to, but we find ourselves trying to explain it and come up short.  (I guess we always will.)

We enjoy this sweetest-of-dishes every Friday along with the pecan toffee bits we savor for dessert, if we haven’t already eaten them all.  We like how they get stuck in our teeth, so we can enjoy them longer.

When Darce looks at me, she says, “You are who I used to be – DOING. BEING. ALIVE.”  She seems to admire me in a way she was unable to admire herself.  I doubt she ever asked herself, “Do you know how special you are?”

When I look at Darce, I see who I hope to be, 50 years from now.

Darce greets me with an eagerness only akin to those who love me for my own sake.  She even remains interested in me, long after I take my seat.  She asks great questions and laughs in all of the right places.  She’s a great listener and thinks I’m a great listener, too.  And we laugh at how much people talk and talk and talk, and at what they can’t hear us saying. 

Maybe we got the same superpower when we were 16 – when her Mom died and mine stopped walking.  Maybe something is born in you when you become a teenage mother for your own Mom.  Maybe that is why she “walks around more in the world of other people than in her own world,” and why I do, too.

We wonder aloud what dying will be like.  She is even fascinated by it, when she is not too tired to hold it away from herself to give it a good look.  She thinks she is closer to knowing for sure, and I think she is right.  But, she remains unafraid and in moments, would “welcome it, even.”

I imagine my Fridays without her.  It makes my eyes sting and my throat lumpy.  I imagine eating tacos by myself and wondering why TGIF doesn’t resonate the way it used to.

I imagine writing a story to tell the tale of Darce and Heidi Day, and a desperation to share it with her.

So, I stop imagining and I start writing.  Because there’s still time.

I wrote the first page in the Taco Bell parking lot and read it to her yesterday.  I asked for her input, but she wanted it to be all mine, so I’m finishing it this morning in my favorite spot.  As we tried to remember the name of Paul Harvey at our last vist, I told her I would read her the “rest of the story” next Friday.  

I hope she likes it.

 

Life's Pages

I've been thinking about writing a book for as long as people have been telling me I should, which has been awhile now.

My husband insists I have "a book in me" and breakfast with one of my dearest friends always starts with the same question.  "Have you found a publisher, yet?"

Honestly, I laugh at the thought of having anything left to write (and the irony of this post in light of that).  Ecclesiastes and nothing-new-under-the-sun are forerunners in reasons why not.  There is no storehouse of ideas, or anything within me that feels like it is waiting to be written.   

Perhaps, it is what I've already written, they suggest.  

While this is very nice and affirming, it hasn’t proven a springboard for anything other than good feelings about what has already been done. 

But, occasionally things happen which feel like a nudge toward something. Things that make me think that maybe I shouldn’t rule it out.  Not just, yet.

Little things like little questions in little blue books that say, “Take something that feels big and make it smaller.  What is the first step?”

And big things, like meeting a new hospice patient and her family. Carol.  Her greatness unfolded right there at the kitchen table, in part, but not exclusively borne of her length of years.  I admired her bright eyes, painted fingernails, and her paintings on the walls.  

I inquired about whether she'd ever consider writing a book.  Her daughter-in-law replied that she already had.  Her son disappeared from the table and placed it into my very hands.

I had to fight back tears, and said as much.  Not just because she'd done the work of it, but because an aggressive dementia has closed the window of time when doing any such thing again would be out of the question.  She simply stated that she started with a table of contents, went as far back as she could remember, and went from there.  

I’ve only just begun to read it, but I am in awe of it.  Its cover, contents, and weight.  I think about all that has happened within her life and its pages, and wonder how much of it she remembers or would have been lost without her rendition.

She reminds me that there is more than one reason to write a book. For yourself, now.  For your family.  For hospice chaplains and interested strangers.  For profit, if you have the means.  And for yourself, later.

Only the last reason might be the one for me.  The one that pushes me over the edge from dreaming to doing.  What if by writing these things now, I can revisit my life again as me with intimate knowledge or as an outsider who has forgotten?  As one who admires the main character in the story, but has forgotten I was her?  Or as one who gains some warmth of soul by hearing a “new” story written in a really, really, really familiar way?  

Carol’s first chapter begins with a quote by James Barrie. “God gave us memories that we might have June roses in the December of our lives.”  

Thank God for difficult ideas and realities put simply and beautifully. 

And thank God for Carol and the Prestenbach family, The Bends In My Road, and the ability to inspire at every age and in every circumstance.  For June roses in December, thoughtful planting, safe-keeping, and books waiting to be written…

At Your Window

I’m sorry in advance that this is depressing.  But, the reality is stark.  I wrote this poem on my way home from work after doing another window visit today.  

I understand that nursing homes are trying to keep their residents safe, intentions are good, they have to follow the rules that other people make, and the heroes who work there are working very, very hard...

But, they are suffering trying to be all things to all people, and the people they are working so hard to serve are suffering more still.  I don’t know how to change laws or rules, but I know how to write.  And I know how to hope to be a voice for the voiceless as people languish in the silence...

At Your Window

I am standing outside your window

And you can see me there

But I cannot hold your hand 

And I cannot stroke your hair.

I yell through the glass that I miss you

And I fill your bird feeder

You yell back from your bed

That you feel bad everywhere.

I say that I am sorry

I say “This is the pits”

You lay there untouched and seen

Hoping this is it.

But it’s not and you grow tired

You’re angry they like to say

So the overworked few who can come in

No longer want to stay.

I tell you that I love you

But through the window I cannot climb

So, I turn around and walk away

And again leave you behind.

I hope that some little birds

Will come and stay awhile

Though they innocently flaunt their freedom

May they also bring a smile...

While you lay in endless wait 

For things to open up

You will not die from Covid

You will die from lack of love.

All In a Day’s Work

Today is a need-to-write-it-out day.  Not that it was a bad day.  It wasn’t.  It was a good day, full of lots of different things that all fall under the same umbrella, which is my job, which doesn’t feel like a job at all.  

It started with a team meeting to discuss plans of care for our hospice patients, just like we do - every two weeks.  

I found myself with an hour to spare before my next visit, so I made an impromptu visit to a friend and recent widow.  She served me lunch and wondered how I do my job.  She encouraged me to use the bathroom before I left for my next visit, not to speed, and sent me with cookies to go.  I marveled at how she was caring for me while learning how to get through a day in her new life.

Next, a scheduled visit to a beautiful home in the country.  (I only sped a little.)  Bath and lunch were finished just in time for a living room concert for mother and daughter.  Conversation about how glad they are to be together in their home, and not separated because of COVID visiting restrictions was a welcome topic between songs.  

This, on the heels of singing Christmas-in-July carols in the rain yesterday with some of my coworkers and volunteers at a couple of nursing facilities - because the residents aren’t sitting in their living rooms with someone they love, and because we can.

Got a call on the way home from a relative of one of our patients who recently passed away.  She taught me a lot about faith and perseverance, and a little secret about making a wish when you see a red bird, and stamping it onto your hand before the red bird flew away - just like her Mom taught her.  I only taught her how to make a paper flower.  Anyway... 

They were cleaning out her room and wanted to donate some things, so I stopped by to pick them up.  I reclaimed the hummingbird feeder I bought for her and the plant stand she no longer needed.  No doubt they will find another hook to hang on and a plant to hold.  They will continue to do their part in bringing the little bit of joy they’re able, which reminds me all of the people I have the privilege of working with and the people that we serve— and know, too, so will we.