Dying Without an Elephant

Elephant on bench looking out window

Toward the end of my brother’s life, he spent every waking hour in a faux-leather armchair by his living room window. He was companioned by the puff-puff-puffing of an oxygen concentrator, a walker with a basket full of pills, a laptop that helped him stay connected to people around the world—and an elephant.

I don’t know whether the elephant’s name was Denial or Hope, but the sicker my brother got, the bigger the elephant grew, nourished on secrecy, silence, and relentless positivity. The floor around its feet was covered in eggshells.

That elephant robbed me of some of the most meaningful time I could’ve spent with my brother. I never got to tell him how much I admired and loved him. I didn’t get to thank him or relive memories that only the two of us shared. And I never got to say goodbye.

I didn’t realize what I’d missed until Kelly Lindsay was diagnosed with glioblastoma and began writing about his experience in a CaringBridge blog. He refused to embrace battle metaphors. He wasn’t “fighting” cancer, his tumor wasn’t an “invader,” and he wasn’t striving to “beat” a disease that would eventually kill him. Instead, he strove to unconditionally love it.

Not only was Kelly’s experience elephant-free, his choice to love his tumor put me in an uncomfortable position. I could not love Kelly and hate what he loved. If I was going to love him, I had to love all of him, including his tumor.

I didn’t want to do that. I struggled to accept, much less love, the thing that was killing him. So, I asked Kelly for help.

“This tumor is part of me, and I’m actually grateful for that part,” he said from a faux-leather chair with a view out his living room window. “The whole year has been valuable. Not in ways I could really enumerate, and not in ways that, when I was first diagnosed, I’d say, ‘Oh, fantastic! That’s great news.’ As far as a learning experience, it’s not one I would’ve wished on myself or on anybody else, but it’s been pretty spectacular.”

Kelly had cancer once before, and his wife Diana had it twice. She was diagnosed with stage four lung cancer in 2006, and oncologists gave her three to 12 months to live. Kelly was her caregiver then and, miraculously, she became his caregiver more than a decade later.

The two of them were in cancer graduate school, and that might be what enabled Kelly to harvest riches from an experience that everyone else would rather avoid. He said the year after Diana’s diagnosis was the best one of his life.

“And this year, if it’s not the best year, is the second-best,” he said. “It just shows how wrong I can be about a big picture. It’s all actually pretty exciting, Petra. In a way I wouldn’t have thought.”

Kelly and Diana transmuted their cancer experience into something that has benefitted hundreds, if not thousands, of people through the founding of a nonprofit called Healing Circles. It offers social support through small groups of people (called circles) who have a challenge or interest in common.

“In a lot of the circles at Healing Circles, people have focused on death and dying and made it an interesting, intriguing part of life,” said Kelly. “Instead of this scary, awful thing that ends something, it starts something, and you don’t want to miss it. I want to know when the side effects end so I can enjoy this other part of it that doesn’t need to be scary. It doesn’t even need to be endured. It needs to be enjoyed, so that’s probably where the loving part comes, too. This is a whole new aspect of life. Why rush through it?”

Loving someone who’s dying without an elephant is excruciating. It was difficult to simultaneously hold onto Kelly and let him go. To stay present with him and grieve the loss that I knew was coming. I say that as a distant planet orbiting Kelly’s sun. By contrast, the orbit of his brother Tom brought him much nearer, close enough to be overcome by his love for Kelly and the loss he knew was imminent.

Could I have born the anticipatory grief that Tom bore for Kelly? Could I have grieved for my brother the way Tom grieved for his? Would I have had the courage to speak openly about the death we both knew was coming?

I think so. I prefer the present pain of acceptance to the deferred pain of denial. Death comes with or without an elephant, and grief is inevitable.

When Tom’s friend Bin, whose mother died of glioblastoma, learned that Kelly had been transferred to hospice, he wrote, “Lean into this crazy shit, my friend. The only thing worse than what’s happening is pretending it’s not.”

I didn’t have the opportunity to lean in with my brother, and pretending that he wasn’t dying didn’t keep him alive. So, I will say now what I couldn’t say then.

“Petey” and “Tommy”

Thank you, Tommy, for being such a good-natured companion throughout our child- and adulthood. I can’t remember a time when you didn’t take the high road.

Thank you for your thoughtful kindness and for the compassionate way you advocated and cared for our parents. And thank you for loving me in a way no one else could.

I miss your bear hugs. I miss your mind. I miss our in-jokes and the way you called me “Petey.” I even miss the noogies.

There are nearly eight billion people on this planet, but it feels empty without you.

The mountains are bigger today

I live on a jewel of an island flanked by two mountain ranges. In the morning, the sun peeks over the Cascade Mountains, igniting the snow on the Olympics in shades of pink. And in the evenings, the sun slides behind the Olympics, bathing the Cascades in golden light.

The thing is: The mountains move. Not side-to-side, but forward and back. Some days, they look like they’re right on the shores of Puget Sound. Other days, they seem teeny and distant.

Why? It turns out that the mountains look close because of a temperature inversion. Warm air sits on top of air cooled by the frigid waters of Puget Sound. Light rays bend toward the colder air, causing the mountains to appear above or taller than their actual position. The greater the inversion, the bigger the mountains seem. 

The point is: The mountains seem bigger because of something in my environment.

And so it is with my grief. My beloved little brother Tom Roush died earlier this year.  We were born a year, a month, and a day apart, and we were a set.

Tom and me sitting on our grandparents’ steps in Ossweil, Germany (photo by Irmgard Roush)

This planet is teeming with 7.7 billion people, but in the absence of a single human being—this particular human being—my world feels hollow and empty. It was so, so much richer when he was in it.

Some days, I’m OK. Some days—lots of days—I’m not. Today, I was taking the garbage out and heard a single-engine airplane overhead. Then I saw a passenger jet flying low over the horizon. Tom would have known what kind of planes they were just by hearing the sound of their engines.

I went inside to make lunch for my partner’s birthday and realized that I’d never get another birthday card from Tom. I was never much of a card person, but he spent time picking just the right one, and we signed cards in a way that only we found amusing.

Like the mountains, my grief looms larger depending on environmental conditions, and my loss seems  bigger on those days.

Tom and me in May of 2016 (photo by Stephanie Himmel)

But sometimes, the mountains are invisible. At night, for example, I become blissfully unaware of my loss, only to rediscover it in the disorientation of morning, when I feel the weight of sadness in my body. Other times, the mountains are obscured by clouds, hidden by my need to attend to the banalities of life. But when my task is complete, the clouds part, revealing the mountains again.

There is no moving these mountains. But in their mercy they grow, they shrink, they disappear altogether and, in so doing, they help me learn how to live without Tom.

Header photo shows the Olympic Mountains from Ebey`s Prairie on Whidbey Island and was taken by Steve Halverson  (CC BY-NC-SA 2.0.) Thank you, Steve!

 

 

 

 

 

 

 

A prayer to Phoebe

Phoebe (August 28,2005-March 15,2011)

Dear Phoebe,

I have never witnessed greater pain than I did at your funeral on Friday. I felt it in my body. There were times when I could hardly breathe. And Phoebe, I barely knew you. How much worse must it have been for your parents, who loved you more than life itself?

Please stay near them. Be obvious about it. Be clumsy about it as they adjust from the warm tangibility of your physical presence to the wispy subtlety of your spiritual being. Help them know you, not only as the five-year-old girl you were, but as the powerful spirit who loved them so much, that you agreed long ago to draw forth from them greater love, devotion, effort, and courage than anyone thought possible.

For more than two years, they tapped in to reserves that they didn’t know they had in their fight to keep you alive. And now they are empty. There is little left with which they can care for themselves or each other.

They must’ve concluded by now that the source of their strength was not entirely their own. It couldn’t have been, because caring for you in your illness required more strength than human beings typically possess. Assure them now that that source of strength is still there. Show them in a tangible way that you are still there. Remind them that we are still there to hold and support them.

The world as your parents knew it has ended. Help them deal with the absolute sacrilege that life will go on. Help them now to do the most courageous thing of all: to live without you.

Amen

Sebastian

If Death were a restaurant,
And I was seated beside your table,
I’d look through the menu
and then tell the waiter,
“I’ll have what he’s having.”

You couldn’t have ordered it up any better.

Unfortunately, the waiter brought your meal
Forty years too soon.

Sebastian Degen died at age 47
on July 2, 2009

Illustrating emotions

When I realized that I had to come up with 60 images, I knew I’d need help. So, I invited three dear and creative friends–Tony Nahra, Rand Babcock, and Peggy Fitzgerald–to join me for regular brainstorming sessions. We sat around my dining room table and tackled one emotion at a time. Each of us silently wrote down images that came to mind, and afterward, we discussed them. Usually, one image emerged as the strongest, and we moved on to the next emotion.

Our ideas enabled me to tell artist Kris Wiltse, “Grief looks like an adult curled up in a fetal position.” Kris drew a rough sketch, and after I approved it, started carving the linoleum blocks. In the case of Grief, the rough draft and the final illustration looked a lot alike:

Grief Grief

But other illustrations went through changes before we settled on a final image. Here are the rough and final versions of Hate, for example:

Hate Hate

These changes came about, in part, because I sent the rough drafts to a group of people via e-mail. The feedback that people sent led to better images.

One of the things I enjoy most is collaborating with others to create something that none of us could have created individually. Being artistically ungifted, there’s nothing better than working with a commercial artist as talented as Kris. But Kris wouldn’t have had anything to illustrate without Tony, Rand, and Peggy. What a gift they gave to me, and to the world!

The best place to see all of Kris Wiltse’s illustrations is in the free e-cards area on the Mixed Emotions web site. Just click a thumbnail to view a larger image.