LESSONS FROM HOSPICE: Liar, Liar…

There’s a big difference between the “lies” that heal, and the truths that hurt.

I have a friend who took care of her husband, who had Alzheimer’s, until he died a year ago. It was very hard for her, especially since both of them worked closely with families who experience loss, death, and devastation.

You can gain a lot of insight working with others on this hard, sometimes lonely, journey at the end of life. But you don’t get a free pass just because you’ve witnessed this journey with others. In fact, it seems like it’s even harder, if you’re ‘in the field’, when it happens to you. Maybe we feel like we should know how to ‘do it perfectly’. But when it happens to us, there’s no such thing as ‘doing it perfectly’. There is just ‘getting through’.

Caring for a person with Alzheimers, and other cognitive issues, is especially difficult. Their view of the world, their resources for dealing with it, are changed drastically. The old method was to constantly fight for reality–yours! Maybe, with enough reinforcement, we could ‘force’ them back into our world. Tell them the same thing over and over and over, and eventually, they’ll get it.

Sadly, this approach does not work. In fact, it creates more stress, more anxiety, in the person.  People often still have an emotional/social self–they sense they are ‘doing it wrong’. When they are constantly reminded of this, things go downhill pretty fast. Anxiety leads to agitation, anger, and even agression.

Current strategy is to ‘go along’ with the client. “I’m supposed to be at work!” they exclaim. “I have to get ready!” You may choose to ‘go along’–“Sure! But we have to have breakfast first.” “Or, “Sure, we could do that! What would you like to wear to work today? Let’s get dressed. OH…you might want to take a shower first!” “Or you gently ‘remind’ them that today is a work holiday. So maybe they’d like to go for a drive in the country instead?”

This can be difficult, though, because it doesn’t feel ‘honest’. The hardest part of caring for clients with cognitive issues? “The lies!” my friend exclaimed. “Our relationship was based on trust, and respect, and honesty. And then, to keep him calm and at ease, I had to lie to him, over and over and over, every single day!” She felt she had worn away the last thing that connected them, by lying to him.

The best advice I can share with you today is to point you to a person who embraced this situation himself, and wrote about it.  For insight into these strategies, I highly recommend the website Alzheimer’s Reading Room. Bob DeMarco went there and back again, into the world of Alzheimer’s while caring for his mother.

His insights are filled with integrity, insight, and simplicity. He stresses that to create a new, rich relationship with your loved one living with cognitive issues, you need to go to their world. We need to look at their point of view, and understand where they’re coming from. The person we used to know is changed, due to major changes in their brain and cognition. We cannot hold them to who they once were, to what they could have been. We have to work with who they are, and what they’re doing now.

We tend to think in terms of absolutes: Good and evil. Right and wrong. Truth and lies. Even the grey areas of white lies and fibs can feel overwhelming when you have to practice it over and over, day after day after day.

Alzheimer’s is not a world of absolutes. For a person in this world, it is a place of ever-changing reality, as memories fade, as dreams flood into waking time, as it gets harder and harder to understand what’s what.

DeMarco says, over and over: You have to go to their world. You have to see through their eyes, understand through their experience, work with their fears and anxiety.

I was going to go into a big long spiel about lying vs. going to Alzheimer’s world, and kids and Santa Claus/Easter Bunny/Flying Spaghetti Monster, but there’s just this: When we talk to kids about death and dying, sickness, bad accidents, we frame it so it meets them where they are. A four-year-old grieving for a dead pet needs something different than a 12-year-old, etc. The same when we are caring for/living with/working with people with cognitive issues.

A friend told me how she struggled what to tell her dad, who had dementia, about her mom/his wife, who had just died. “When he asks where she is, do I tell him the truth”, she agonized. “Then he reels with the shock and weeps. Two hours later, he asks me again. I don’t want to lie, but telling him the truth is like torturing him with harsh sorrow, over and over, and over again. It’s new to him every time.”

Eventually, when he asked, she told him she (her mom, his wife) was ‘away’. No, no one was sure just when she’d be back, but she was okay, and sent her love, and they would see her again ‘in awhile’. This reassured him, until the next time he asked.

This went on for months, until one day, he asked her hesitantly, “I have a feeling Mom isn’t coming back. Am I right?” She then told him yes, but again, gently, simply agreeing. And reassuring him that she (the mom) was okay, they would be okay, and that she (the daughter) was there for him. He wept, but was not devastated. The question faded gradually away.

Understand they can no longer be in our world, but we can visit them in theirs. Have compassion. Understand there is a difference between lying to manipulate, to gain something you don’t deserve, or to avoid consequences of your actions–and meeting them where they are, with love, with patience, with respect and kindness, in their world.

If your religion believes that God would never give someone more hardship than they can handle, then understand a person with dementia cannot handle hardship like they used to. Accommodate them.

It’s not easy–it never is.  The role of the caregiver can be lonely, and already so very, very hard. So please don’t agonize over having to ‘lie’. What you are really doing is not hurting someone  who cannot understand, or process, the hurt. The ‘lie’ you tell to create peace in someone’s heart who has no way to heal–to avoid giving them pain they cannot protect themselves from–that ‘lie’ is actually kind, compassionate, and healing.

So be kind to yourself, too. The only people who would judge you, just don’t know. (Yet.) The ones who know? Believe me, they understand. And they are supporting you in spirit, every step of the way.

AM I A FALCON, A STORM, OR THE GREAT SONG?

For the last few years, I’ve been teaching writings workshop for people who are grieving the death of someone close, at a non-profit hospice agency here in Keene. Using journaling, simple poetry writing exercises and sharing our scribblings, we gently help each other move forward in our grieving process.

These classes are always powerful, small miracles made visible in the world. They’ve been so successful, I’m developing an art collage workshop, too. We had our second class last night, and I’m amazed how quickly the group has come together already.

In all these sessions, I’m always anxious when I walk into the room. I remember calling my supervisor, the wise woman known as Lorraine, my first week in. “These people are in such pain!” I exclaimed. “I’m so afraid I’ll say the wrong thing, or be too flippant, and hurt them more.”

“People are pretty tough,” Lorraine said frankly. “Trust me, you’re not going to break them!”

She was right, of course. I am constantly amazed at how courageous and strong these people are, shattered as they are by grief. They shine brightly. I learn so much from them, much much more than I teach them.

But I still worry at the start of every session, and I’m anxious at every meeting. When we write, first thing, the three words that describe how we’re feeling, mine are almost always, “Anxious, Unprepared, Clumsy.”

Until the miracle happens. The power of writing what is in our hearts, and sharing our pain, is a balm. The magic of hearing the voices throughout the ages who have suffered the same pain, the same unbearable sense of loss, echoing in our modern day hearts, somehow helps the healing process.

And by the end of class, we’ve wept, we’ve hugged, we’ve shared, we’ve remembered, and we’ve laughed. All in one brief hour.

The last few days, I’ve been pulling together more poetry to bring to these sessions. Here’s one I found last week:

FOR THOSE WHO HAVE DIED
ELEH EZKERAH – These We Remember

‘Tis a fearful thing
To love
What death can touch.
To love, to hope, to dream,
And oh, to lose.
A thing for fools, this,
Love,
But a holy thing,
To love what death can touch.
For your life has lived in me;
Your laugh once lifted me;
Your word was a gift to me.
To remember this brings painful joy.
‘Tis a human thing, love,
A holy thing,
To love
What death can touch.

Judah Halevi or
Emanuel of Rome – 12th Century

I read this to the group. “This was written over a thousand years ago,” I said. “Someone felt this way, and wrote these words to you, people he knew he would never know nor meet. He wrote these words because he knew you would be here, today, and he knew you would need to hear them.”

I also love that people now share their favorite poetry with me. I mentioned that I needed more poems on loss and grieving to some friends. One said, “Oh, you have to read Rilke! He’s good for grieving!” An odd phrase, but I found it to be so true. I found this today:

“Let This Darkness Be a Bell Tower”
by Rainer Maria Rilke
translation by Joanna Macy + Anita Barrows

Quiet friend who has come so far,
feel how your breathing makes more space around you.
Let this darkness be a bell tower
and you the bell. As you ring,
what batters you becomes your strength.
Move back and forth into the change.
What is it like, such intensity of pain?
If the drink is bitter, turn yourself to wine.
In this uncontainable night,
be the mystery at the crossroads of your senses,
the meaning discovered there.
And if the world has ceased to hear you,
say to the silent earth: I flow.
To the rushing water, speak: I am.

Sonnets to Orpheus II, 29

And as I wrap up my preparations for the last class in this session, I find this one grabbing at my heart:

Circles

I live my life in big circles
that surround all things,
that circle around all that is.
Maybe i will not complete the last circle,
But i will attempt it.

I circle around God
that ancient tower,
and I have been circling
for centuries and millennia,

And i do still not know: am i a falcon,
a storm, or the Great Song.

– Rainer Maria Rilke
translated by Br. David Steindl-Rast

Am I a falcon, a storm, or the Great Song?

I don’t even know what that means.

And yet I sense it means…everything.

INVISIBLE SUPPORT

HOW MUSEUM DISPLAY REMINDS ME OF HOSPICE

I’m taking an online class on making mounts for museum display through the Northeastern States Conservation Center. A mount is the supporting structure that allows an artifact–a bone, a book, a bonnet, a basket–to be safely displayed in an exhibit. I want to learn more about making such displays, for my new series of artwork.

I’m in way over my head. Almost four weeks in and I’m still three weeks behind. There is so, so much more than I could ever have imagined to the incredible world of mount making. Mounts can be as creative and beautiful as any art form. And like many art forms, the discipline is formidable. So many things to consider: How fragile is the artifact? What do you want the viewer to see? What materials will not interact and damage the artifact? What will protect it from shock–everything from bumps and shakes to vibrations from passing trucks and earthquakes? The reading requirements looks about as manageable as WAR AND PEACE, without all the Russian names.

I’ve been reading an article called MOUNTMAKING by Pam Gaible, then Mount Making Supervisor at the Field Museum of Natural History. Ms. Gaible presented it at the American Association of Museums Convention in 1991.

I was fascinated by this paragraph:

How do you make a mount?
There are lots of factors to be considered when making a mount. A very important one is to have open channels of communication between the developer, mountmaker, conservator, and designer.

First the developer compiles an artifact list. Then the mount shop supervisor, the developer, and the conservator review the artifact list and create a photo book of the artifacts. The book contains a page for each artifact, which shows photo, measurements, material notes, and conservation concerns for mounting of the objects. It also contains a rough sketch of how an object can be mounted and a time estimate for making that mount.

She shows a few pages from such a book. The drawings and illustrations are beautiful. It looks like an artist’s sketchbook.

I once had the honor of viewing Cynthia Toops‘ sketchbook. Cynthia is one of my favorite polymer clay artists. Her work has a narrative feel that resonates with me. Sometimes playful, always thoughtful, charmingly folkloric yet sophisticated. Her sketchbook was as beautiful as her artwork, with tiny, exquisite drawings, details and notes. I am reminded that sometimes our tools and processes, just like museum mounts, support our art. And yet are so very artistic in themselves.

Then I read this paragraph, describing kinds of mounts:

* A typical disappearing mount. A mount that you aren’t aware of
when you view the object.
* A mount that keeps an object from migrating in the case.
* A mount that absorbs shock.
(This shock may be as small as the vibration of air conditioning
equipment or as large as an earthquake) [West Coast Style].
* A mount that helps preserve the existing structure of an object.
* A mount that is semi-permanently attached to the artifact and
functions as a handle and support.

(Rather than handling the object, you handle the mount.)
* A mount that supports an object while at the same time creates
the illusion that the mount is something else.
(Such as a mount that looks like a person, horse or campfire.)

I know this is weird–Lord, I can find synergy in anything these days!! But I thought this sort of sounds like my grief writing workshop.

A disappearing mount….that you aren’t aware of when you view the object. My purpose is to get people writing and talking about their grief. But it has to be subtle, almost invisible. Almost effortless. I do this by keeping the writing tasks short and directed. Even the poetry writing exercises are originally designed to be used with elementary school children.

But simplicity does not mean meaningless. Even the “easy” outlines create powerful results.

* A mount that keeps an object from migrating in the case. We use topics and time limits so that people can’t sink into their grief. Everything is quick, moves along. We take time to share, and cry. But we aren’t left to wander off into our misery.

* A mount that absorbs shock. A person who is grieving has suffered an enormous blow to their system. Everything hurts. Nothing brings relief. In our class, people feel like they can relax. They can cry. They can say what they really feel. Because everyone there knows what it’s really like. As one writer said, “It’s like we’re all on the same lake in a different boat!”

* A mount that helps preserve the existing structure of an object. We are deeply changed by grief. We will never be the same. But we are also still…..us. We remain. We survive. We go on, alone.

* A mount that is semi-permanently attached to the artifact and functions as a handle and support. People don’t stay long in the support groups. They come when they are ready for something more, something to help them move along. They get what they need. They heal. They go back to their lives, a little stronger, a little more resilient. They move on.

A mount that supports an object while at the same time creates the illusion that the mount is something else. I had to think about this for a moment. Then it dawned on me….

People think they come to a support group or a support workshop for help. They think we have the answers, or a process that will help them feel better.

But all we do is provide a safe place for them to talk. To share. To contemplate what this loss means to them. They do the hard work, the heavy lifting. They look at the things they’re afraid to say, or think, because that might mean they’re “not a good person”. (Almost all deaths are complicated, and some are more complicated than others.)

They dig deep into themselves, and let the light in.

They share with others who are in the same place. They sympathize. They offer comfort, courage, support. Wisdom. Understanding.

They do this for themselves, and for each other. We, the facilitators, sit and look on in astonishment.

Ah, yes, museum display and hospice/bereavement services. Who knew how much they have in common?!

HOW TO VISIT SOMEONE IN A NURSING HOME Part 2

I told you I’d forgotten something! More tips on how to make your visits richer.

TALK STRONGER, NOT LOUDER

If the person you’re visiting is hard-of-hearing, try this simple trick: Get closer! Move so you can speak directly into their ear. Often this is all they need, and you may not need to speak any louder.

If you do have to speak louder, go up in increments. I can’t tell you how many times I’ve seen visitors and staff go from normal voice to YELLING. It always startles the client (and me!) so much, they nearly jump out of bed.

SING

Or hum, or bring a CD of their favorite music. This is especially nice if someone is non-verbal. Our brains are hardwired for music (and art, by the way.) If you don’t believe in miracles, test yourself by watching this short clip of an elderly man restored to himself through the power of music.

Don’t be afraid to be silly. One client was only conscious a few minutes each day, and spent most of her time semi-conscious or asleep. I’m not good with remembering lyrics, so I sang the only song I could think of: Come Away With Me, Lucille, in My Merry Oldsmobile. In my defense, I was in a lot of gay ’90’s (that’s 1890’s!) musical revues in high school, and I love the word “automo-bubbling”….

Janey (not her real name) roused, opened one eye and glared at me. “Just how old do you think I am?!” she asked indignantly.

TURN OFF THE TV

I don’t think I need to explain this one. You think the electronic babysitter is just used on kids?!

It’s especially heartbreaking to see how deeply affected clients are by having non-stop soap operas blasting all day. Some of the actually incorporate the dialogue into their dreams and memories. One day a poor gentlemen told me that people were angry at him, and yelling. He’d confused the the evil plots and cruel machinations of a daytime soap with real life.

PICTURES ARE WORTH A THOUSAND WORDS

If you have pictures of you and your friend together, bring ’em! Or ask them about the photographs they have on display. Usually these are ones they cherish and brought with them, or they are important photos their other friends and family have brought. Photos can be powerfully evocative.

NO GUESSING GAMES

Even people with plenty of cognitive aptitude can get confused. Poor eyesight, compromised hearing, being roused from sleep….Have mercy! Good Lord, no one likes it when a stranger turns up at a party and says, “Do you know who I am?” or “Do you remember me?”

Don’t ask them to guess who you are–tell them! “Hello, Frannie, my name is Luann. I’m Mary’s oldest daughter, the one who lives in New Hampshire.” Or, “Hello, Mrs. Brown, I’m Bill Meyers. I was your student when you taught second grade at Houghton Elementary School. I’m the boy who brought a snake for show-and-tell, and it got loose in the classroom!” Trust me, she’ll remember you.

For more great suggestions, visit JazznJewelry’s excellent comment to my previous post.

HOW TO VISIT A SOMEONE WHO’S IN A NURSING HOME Part 1

Recently I accompanied my mom to visit two of her good friends in a nursing home, one of whom I wrote about yesterday.

I could tell Mom felt a little awkward. One woman was napping in her chair. “Don’t wake her!” mom exclaimed. (Okay, whispered. Exclaiming would have awakened her fried.) She wanted to leave immediately. Unfortunately, Robin sat on her bed and set off an alarm. Erna awakened, and fortunately, was happy to see us.

At first, with both there was a lot of cheerful chatter. Mostly the old stories told and retold. When the stories ran out, Mom wanted to leave.

I have vivid memories of my dad doing the same, years and years ago. There was an older woman, who grew up in Scotland, who worked for my dad in our family restaurant. She retired; soon after, she was confined to a wheelchair and eventually moved into a nursing home. She had no family here in the U.S. except for her son, who rarely visited her. I remember “making the rounds” every Sunday after church–out to the nursing home in the country to visit Bessie, back to town to visit my grandparents, and then maybe back to the “store” for an ice cream cone.

Bessie adored my father, and was always happy to see us. Dad would chat about ordinary things–the restaurant, our doings and comings and goings. I remember him bringing her flowers from our garden.

But sometimes, especially near the end of our visit, she would cry and beg Dad to get her out of there. As time went on, and she became more frail, this happened more and more, until every parting drew tears.

I remember standing there, embarrassed, wordless, having no idea what to do. I would look at my Dad. What would he do? How would he handle this?

Well, my dad would get embarrassed, too. He would weakly try to reassure her that everything was alright, and we’d all make a fast dash for the door.

In my later years, I pretty much kept up the family tradition. I felt awkward visiting folks in such places, even hospitals. I would agonize over what to bring. Flowers? Candy? Can they have candy?? A book? Maybe they’ve already read it…. I would fill the room with cheerful chatting, clumsily reassure them when things go tearful, and beat a hasty retreat.

I’m still not the soul of compassion, but I try to do better now. Because I know better.

The old rules of how to behave are gone. The circumstances have changed, and so must our patterns.

I try to see what is needed, and what is wanted. I listen. I observe. I touch.

People who have been in such places a long time have different needs. No, I take that back–they have the same needs. But we have to fill them differently.

STOP

Relax and be present.

It’s okay to be with them as they sleep. Sleep is important, yes. Especially near the end of life, deep work takes place during sleep. And it’s still rude to awaken someone suddenly, especially with shaking and loud voices. But perhaps you can sit quietly by them, gently taking their hand. Many times they will sense your presence, and awaken gently. If not, be assured they still sense you on some deep level. Even 20 minutes simply sitting quietly, and holding their hand, can be deeply reassuring.

However, don’t stare at them. Waking up to someone watching you sleep can be icky. Sometimes I just take those moments to think, or daydream. But it’s okay to bring a book if it’s hard to sit quietly.

TOUCH

Taking their hand can seem awkward and forward. When have we ever held hands with our friends, or our family, after we’re five? But people need the touch of human hands, now more than ever. It may be years since someone has hugged them, or stroked their hair, or simply held their hand.

No need to envelop them in a bear hug! I start by nonchalantly taking up their hand and cupping it gently. If someone does not want to be touched, then they will withdraw their hand. But if they welcome it, they will not. They may even clasp your hand tighter.

My friend Bonnie Blandford taught me the “hospice hug“. Instead of our quick little social hugs, it’s simply a longer hug where you let the other person choose when to stop. In fact, if they pull back after a few seconds out of habit, try holding gently for another few seconds. You’ll be surprised how many people will relax and hang on for dear life. I did this with a friend recently who had suffered a dreadful loss. When she realized she could have a long hug, she melted into my arms, and began to sob. Yep, some guys in the group got nervous, and began to make jokes about lesbians. I ignored them all. My friend had lost a new grandchild. She needed a deep hug.

LISTEN

Sometimes people want to be entertained with light chatter and news of the outside world. But sometimes they are scared, or anxious, or lonely. They yearn for richer connection. If they are scared, don’t pooh-pooh their fears. What are they afraid of? What’s making them anxious? You don’t need to fix their problems. But we all appreciate someone who listens to them!

By the way, Erna had trouble speaking and forming words. My mom assumed she was “out of it.” By sitting closer and listening carefully, it became obvious that Erna was actually quite aware and responding appropriately to everything we said. She just needed more time to respond.

STAY

I’m not so nervous about people crying now. I just keep the Kleenix coming until they’re done.

OBSERVE

As they talk with you, listen deeply. Watch “the light”. Note where they are making light of something that actually pains them. Observe the topics that make them light up with joy. For one of Mom’s friends, it was a passing comment about our dogs. She asked, “What kind of dog?” We told her. I asked her if she’d ever had a dog. Her face lit up. “Oh, yes!” She told us several stories, and then got to the one that was painful–the family dog hit by a car, and how terrible it was. The pain, the suffering, the family’s anguish. All these years later, and it was still hard. On impulse, I told her a quick version of the delightful movie, Dean Spanley*. A dog who is killed suddenly, describes it as something he didn’t understand. His former master asks if he suffered. No…no…. There was no pain. It was time to go home. How did he get there? He simply turned towards home, and went there. When asked how he knew where home was, he said, “One just knows. So you turn that way, and go there.” Erna smiled sweetly and sighed.

BE A WITNESS

Tell them about the gifts they’ve given you–the gift of their friendship, their kindnesses, their thoughtfulness. If they were feisty friends, tell them how much you admire their courage to be themselves. Though I didn’t know either woman, I knew my mother treasured their friendships, and said so. To Frannie, who changed her dress on her daughter’s wedding day, I said, “That was such a gift you gave your daughter!”

Ask questions, especially if you don’t know them well. Don’t interrogate–it’s not a fact-finding mission. Just show interest in what they have to say, how they lived their lives, what gives them joy. When they tell you hard things, say, “That must have been hard” and let them tell you more. When they tell you beautiful things, ask them what their favorite part was. Let them tell their stories.

READ

When I do hospice visits, I take books. I take one for me to read to myself and one to read aloud–a book of poetry, or short stories, or novels where individual chapters can stand alone. If the person is religious or spiritual, I’ll bring a book of prayers or blessings. I’ve found that we never lose the desire to be read to, provided the person is up for it. It’s a way to take a break from conversation, a way for them to simply listen, even a way to ease them into sleep. My daughter loves the scene in the movie WIT, where the main character (who is dying) accepts her old teacher’s offer to read to her. John Donne gets voted down, but it turns out the children’s book The Runaway Bunny is beautifully appropriate.

FORGIVE YOURSELF

It’s okay to be thankful it’s not you lying there in the nursing home. They know you feel that way. And it’s okay. You’re not a bad person. Just human. And they know that, too.

There’s more, but I forgot.

This is just quick overview of how to make such visits easier, deeper and fun. I would LOVE to hear your suggestions, too.

How did I get so smart? Listening to my daughter speak of her experiences working in such institutions–nursing homes, assisted living units, rehab wards. And my hospice training, which was rich with insights and practical advice.

*Dean Spanley is my new favorite movie. It starts slow and quiet, fueled by odd and cantankerous British humor, with the most incredibly beautiful and poignant ending. WATCH IT TO THE END!! I fell asleep halfway through the first time I watched it. Fortunately, I made myself watch it again. STAY AWAKE, or watch it twice, and I think you’ll find yourself deeply touched by its message. If you love dogs, you’ll find it triply delightful. But you don’t have to be an animal lover to appreciate its message.

STARING AT THE SUN: Thoughts on What Makes a Rich Life

I made these earrings (one of two sets) when I grew past fearing what anyone would say about them, and they are my favorite ones to wear! (A professional classical violinist bought the other pair.)

I’ve been doing a little digging on death lately.

Maybe I should backtrack and explain.

I always thought I was the only person obsessed with death and dying. I think about it all the time. Partly because I’ve had a few brushes with it, partly because I’m anxious in general.

I worry about what I’m supposed to be doing with my life. Whether I’ll achieve any of my goals or not. Whether I should just be happy with the goals and blessings I already have. Whether anything of me will last (beyond the world’s largest and most interesting garage sale). Whether I’ve done right by my kids, my family, my husband, my art, my writing.

Becoming a hospice volunteer was part of my exploration about death. I’ve learned so much, grown in so many ways. Still learning. Still growing, with every single client.

Many people think people who do hospice work are “better”, or “braver” or “more noble” than your average person-on-the-street, that we have a better, more evolved understanding of death. We’re not, and we don’t. When our own loved ones are in danger, or dying, we are just as much at sea as everyone else.

We’ve simply learned a little bit more about being as opposed to doing, or even worse, fixing. (Though, as my incredibly grounded volunteer supervisor Lorraine would say, “Hospice is full of recovering fixers…!”)

I’ve been reading an odd book called STARING AT THE SUN by Irvin Yalom, a therapist who deals with death anxiety. Working on the assumption that our fear of death is at the heart of most of our anxieties, he works to assure us that understanding this can lead to a richer LIFE. He talks often about the basic needs we humans have, and how even the best therapy–a sharing of healthier ideas–is enormously improved when the therapist deeply connects with his patient. Because ideas-plus-connection is an incredibly power force for healing and reconciliation.

Connection. Such a simple word, and one whose strength we can easily overlook.

But everything we do, everything we yearn for, is to garner for ourselves love, and meaningful connection.

When I’m fighting with my husband, what I am pushing down deep inside me is how much I yearn for his good opinion, for his love and respect. When he accidentally breaks the connection between us with a clumsy comment or a snitty response, I am devastated. But I cover up for that devastation with anger.

Vice versa, too.

Why am I yammering on about death, and connection?

Because this is why I make my art. And this is where the power of my images, the power of my story, the power of the cave that inspires me, comes into play.

I try to shine a little light on the wonderful, and frightening, and sad, and awful things that make us human. I try to figure out what holds us all together, while still allowing each of us to dance to our own unique music.

I’m reading another book about prehistoric art called THE CREATIVE ICE AGE BRAIN: Cave Art in the Light of Neuroscience Written by an art historian who is also an artist, it celebrates the unique nature of this human thing called art. The things Ms. Alperts says about ancient art could be said about almost any art being made today: It is unique to the maker as it simultaneously reflects the culture the maker lives in.

I’ve always felt that these artists of the distant past had something to say, something so powerful it reaches across eons of time to touch us today. Creating “…echoes in our modern hearts”, it is something that has lasted far, far beyond the original intentions of its makers. It is the ultimate connection that arcs across 30,000 years, perhaps more.

Don’t we all wish we could leave such a legacy?

At the same time, the message (not being written to us) will forever remain lost, an enigma.

And someday, the knowledge of these paintings, this works of art, these carvings, and our study of them, will be lost forever, too. Because nothing lasts forever.

Such is the mystery of life. Such is the mystery of death.

Oddly, the most moving comment I read in Dr. Yalom’s book was the idea that “ceasing to be” in death is remarkably like “not being yet” before we are born. In both spaces, we will have no consciousness, no sense of being. Why is one frightening, but not the other? Because now we know what we’re missing! (A little death humor here….)

I don’t have a great wrap-up for you today, or even a great thought. It’s just what I’ve been thinking about the last few days, as I stumble my way through this amazing, challenging, beautiful, sad, tragic, happy, confusing, astonishing life.

I’m also starting to de-clutter my studio. That always makes me think of death, too. (See the remark about the world’s biggest garage sale above.) I promise you a lighter piece tomorrow!

SAME LAKE, DIFFERENT BOATS: The Power of Writing Through Grief

A talkative guy, Walt always said he invented social media.

Last night we wrapped up another grief writing group at HCS.

Once again, I feel like I’ve climbed a very high mountain, in the company of wonderful people. Once again, I feel honored to be the presence of people who are grieving the loss of someone they love.

Each group has been different: Different people. Different losses. All at different points in their grieving process.

Some are still in the raw, ferocious early stages, reeling from their loss. Some are caught in the soul-numbing middle stage, struggling to remember what “normal” even looks like. They are sure they’ll never feel “normal” again.

They fear if they let go of the grief, of those last difficult memories, they will truly lose their loved one forever.

And then there is this stage, where a tiny glimmer of hope and peace can be seen, and grasped.

The first stage is still scary to me. I remember talking to Lorraine, my supervisor, about taking on this work. I worried about saying the wrong things, or not knowing when to say the right things. If there even is a “right thing” to say to someone whose grief is so fresh and painful. “I’m so afraid I’ll make their grief worse,” I said.

“People are pretty tough,” mused Lorraine. “You’re not going to break them!”

She’s right. And that’s part of the beauty of this work, this writing process.

People begin this writing journey with such pain, it hurts to look at their faces.

We start slowly, with gentle writing “assignments”. We share what we’ve written.

(Yes, I participate, too, and I’m amazed at how it’s helped me. I pick a person I’ve loved and lost for each workshop. This one was for my friend of more than 35 years, Walt Spiller (aka “Walt the Mailman), who died in January.)

We exclaim over the similarities in our “crazy feelings”: “You feel that way, too??”

And yet each person’s journey is unique. Our experiences, the manner of our loved one’s death, their journey, is like no other.

The person we’ve lost is unique. Last night, as we read our last scribblings, one person said, “I’ve come to know who your loved one is, through your writing. I can actually see them!”

Each person has traveled their own road, but yet together. One person said it beautifully: “It’s like we’re on the same lake, in a different boat!”

The same lake…. This is the human experience, after all: We will all lose someone we love. We will all be lost to someone we love. With every birth, there will be a death. To borrow a quote from Canadian painter Robert Genn, “Every puppy begins in joy and ends in tears. So it is with people.

A different boat. Not every death is simple. Some are too fast–loved ones lost to heart attack or accident, no time to say goodbye. Some are too harsh–loved ones lost to suicide or murder. Some are complicated–our feelings for them are conflicted, our love tangled in anger, or fear, or resentment, or worn down to a frazzle after years of care and anguish.

All this, and more, is shared, once a week, in these little groups. Through the power of the written word, ideas are born, feelings are explored, insights are shared. The healing begins. In a safe and sheltering place, people put their lives back together, one little poem and one tiny thought at a time.

How that happens is a miracle. The writing does its work.

For all our frantic scribbling, writing is a meditative practice. It lets us get those swirling, maddening thoughts out of the racetrack of our brains, stops the ceaseless circling and speeding so we can be less reactive, less guarded. We don’t have to worry about the next wreck around the corner. We can slow down and look and see what is in our hearts, and commit those words to paper.

It’s a time to write what’s in our hearts, to say it aloud, to share it with the group. The power of our words–the power of us acknowledging our words, the power of others acknowledging our words–is healing. “I didn’t realize I felt that way!” “What you said is beautiful!” “I feel that way, too! I thought I was alone….” You hear this over and over in this group.

Over the weeks, we build up a portrait of that person. We see the role they played in our lives, and our role in theirs. We remember the times before the loss.

Gradually, instead of the harshness of fresh grief, there is…a softening. Instead of the heavy weight of sorrow, we carry memories–just as strong and durable, but lightweight and supple.

We laugh, we cry, we laugh some more. And we write, and we write.

We are writing down the bones.

There is forgiveness. There is gratitude.

When we part, on the last evening, I see their shoulders, which have been weighted down with grief, set with a bit of strength. I see their new-found confidence, their courage to meet a new day. We hug, we laugh, we cry. And we go home, some to empty houses and shattered lives, but with hope.

So what am I left with, at the end of these sessions?

I’m left with sympathy. Watching people struggle to understand this last, the greatest of human mysteries.

I’m left with amazement at the bravery the courage these people carry, often unaware of their own strength and bravery.

I’m left breathless at the beautiful words they bring forth from their experiences.

I’m left grateful that they trusted the process, they trusted me, to take care of them.

I’m left with respect for the dignity they bring to this journey.

I’m left with peace in my heart.

And I’m always, always left to stand, in astonishment and humility and gratitude, honored to in the presence of these people as they make this difficult, incredible journey.

Walt told a LOT of stories, but now I see they were always told with love, about love.