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.

 

Steve

Funerals aren’t unusual in the life of a hospice chaplain.  The outcome and terms are understood when the relationship begins.  You love and honor each person in life and death as much as they will allow.   

But, I buried a friend this week and this funeral was very, very different.  It seems that no one can bear to hear about it all at once.  Or is it me that can’t bear to talk about it, all at once?

On Tuesday of this week, Steve, “the man who makes you cry” as my boys called him in the beginning, was laid to rest.  

Our friendship began nearly seven years ago when I walked into Room 304.  I was a new chaplain at my first nursing home assignment.  He smiled, and the rest is history.  

By way of explanation, he gestured toward the Lou Gehrig poster on the wall.  Between one to two visits per week, a stylus and a letter board,  I learned what and who and how long, but never why.  

ALS.  51-years old.  Given four to five years to live - four years ago, and his children were the same ages as mine.  Yes, the more I came to understand, the more I cried. 

I counted a bazillion losses and not a single complaint. Working, driving, bowling, volleyball, gambling, golfing, walking, talking, eating.  A two-story apartment, one-story apartment, handicapped accessible apartment.  Parenting, and all that goes with mobility and living independently, vanished one-by-one-by-one.  

And yet, he was so happy.  He was already “cried out”, accepted that he didn’t understand why him, and had made peace with it all, somehow.

Our friendship continued long after my employment ended, and we took a lot of pictures along the way. Goodbyes were consistent when little else was.  

“I’ll see you next time.”  

“I’ll be here.”

I even had a sign made to hang over his bed, which said that very thing…

 

I always wanted to “be there” for him, but living in a different town with a family and full-time job made that a nice idea, rather than a reality.  

I didn’t know how or when it could be different, until I was walking out of the hospital last week and heard someone call my name.  His sister told me he was in the hospital and not doing well.  I wrongly assumed he was still fighting.  As clear as he had been about his fight to live since I met him, he was equally clear about being done.  

I absolutely understood, and told him it was okay.  I visited again the next day and had what would be our last conversation.  I told him I would get his book published, agreed to do his funeral service, and told him I loved him.  He loved me, too. 

I got daily reports from his sister, waited for the word, and prayed.  But, it just so happened that she needed to take care of some things one morning.  Could I sit with Steve while she was out?  Could I ever.  

Three hours became eight when I asked for just a little while longer.  I just held his hand, watched him breathe, listened to 80s music, and prayed in between.  He never opened his eyes.  The sacred gift of time, nowhere to be, and a comfortable chair were altogether new to and cherished by me in Room 304.  My longest visit, and my last.

Steve died the next day.

Like all who loved him, I was happy for him and sad for me, and wondered how on earth I could do his funeral, as promised.  I looked through years of Facebook Messenger exchanges, read his book, and prayed.  The problem wasn’t what to say, but what to leave out. 

It took care of itself.  

When the time came, I liked that I could see him from where I was sitting and hide behind this when the music was playing…

With only the graveside service remaining, I was beginning to feel some relief and took my place in the funeral procession.  After the lead car, in front of the hearse.  Are you sure?

We were well on our way to the cemetery when I thought to readjust my rearview mirror.  I’m not sure how something so significant can slip your mind, but there it was. 

The hearse carrying my friend that I have only ever and always gone to, was carrying my friend toward me.  The firsts and lasts competed, and collapsed in a pile.  

Our first, last, and only road trip. Together, occupying space and time for the last time, traveling that last little stretch of blacktop.  It was his turn to leave me behind, and it was my turn to say it.

                                                                         "I’ll be here.”

I tried to freeze time the only way I knew how.

After years of wondering what the end would look like, I wonder no more.  He lived twice as long as they said he would.  In that time, he wrote his story by blinking his eyes, one-letter-at-a-time.  His story includes submissions from his friends, including me.  The day after he died, I took a deep breath and plugged his USB into my computer, and learned that he took the time to reply to each friend.  I scrolled past all the others.  What did he have to say to me?!  

He had plenty to say, and I had plenty of tears in reply.

What do you say when a man who can’t talk gets the last word?

I love you, too, Steve.  The honor was all mine.

 

Holding Why Like How

I just have a few thoughts I'd like to string together from the strange and wonderful world of chaplaincy I live in.  From hospital rooms to memorial services to nursing homes to hospice suites, the unexpected and perpetual inspiration are my constant companions.  I offer them to you, that you may share in my joy and wonder.

Several things stand out from this week alone.  The most surprising went like this...

I was doing my routine rounds on my floor, assessing and attempting to meet the emotional and spiritual needs of my patients, when I came to the door of a patient I met briefly in the lobby the week before.  At that time, he was in the admissions process, but looked highly uncomfortable, so I approached him to see if he needed help.  He said he really needed to lay down, so I checked with the unit where he was going, took his stuff, and then him, and that was all there was to it.  At least for me.
But, this day, about five minutes into our conversation, he asked, "What's your name, again?"   He lit up when I told him.  He said, "Oh!  You're Heidi!  We met in the lobby the other day."  I said yes.  He said, "You were my angel."  I wrote about you in my notebook.  I write down the names of people who take care of me so I can pray for them.  He started thumbing through one of the two notebooks at his bedside until he found the entry.  He read it out loud, beginning with, "I had just prayed to God to send someone to help me.  Then an angel came to me today.  Her name was Heidi...Thank you Lord, for my Hidy."

I know I am not an angel, but it doesn't hurt my feelings to be confused with one.  If there is an angel in this story, I'm pretty sure it is him.

Hebrews 13:1-2  Let brotherly love continue.  Do not neglect to show hospitality to strangers, for thereby some have entertained angels unawares.

To have met someone for five minutes and a week later to see your name in their handwriting, in their notebook, in their prayer of thanksgiving, there are no words (although, I'm using plenty of them, anyway).  How often are we used by God to answer the prayer of another, without our knowing?  I imagine this feeling to be a hint of what our introduction to heaven will be like, with many a "Huh! and "I had no idea!"

I think this language suits us very well.  We have no idea.  We have no earthly idea.  And I'm coming to the conclusion that this is an important part of the solution for living with any sense of peace during our sojourn here.  It seems that most believers have long accepted they don't know how God does what He does, on any level of creation.  As one of my patients recently told me, "I could give one of my students a million dollars and tell them to go into the lab and produce a seed, and they couldn't do it."   Anyone who has "grown" a child without knowing how can agree.  We know we can't so much as create a knuckle or a fingernail from our own knowledge or power.

If it wasn't so painful, it would be funny to realize that we who understand so little about how things happen, could be so demanding and insistent about why they happen.  What if we could treat why like how?  Maybe, we could at least try.  Resting only in the mind of God, they are equally beyond our ability to comprehend.

(I wrote a song inspired by this idea.  The link is at the bottom of the post if you'd like to spend more time with this idea.)

Sometimes, I get a glimpse into how limited my viewpoint really is.  Recently, I visited with a patient a couple of times before she died, and went by the church to drop off a card on the day of her funeral. Here is the limited viewpoint part...I was actually surprised to see a hearse parked out in front.  Even though I knew she died (that was why I was at the church after all), I was still picturing her in the bed where she laid, in the room where we visited.  I hadn't "moved" her out of that room in my mind.  And if I had thought to, what then?

I realized, not for the first time, that this is one of the harder things about being a chaplain.  It is easy to get stuck in a moment of suffering or death.  We don't usually get the rest of the story. We are "for a moment".  Of course, I realize the impossibility of having it any other way, but still.  I will rest with the words of a beloved priest and coworker, "It is what it is."

I guess that's what it all comes down to.  At least for the people who have lived a lot of life.  One of my nursing home residents, who has gone from regular attendance at worship and Bingo, to passing entire months in her bed, said it best in her prayer request... "To accept my life, as it is."  

So teach us to number our days that we may get a heart of wisdom.

Psalm 90:12

https://youtu.be/kJp3miZ2_Uw