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!

 

 

 

 

 

 

 

The Lighthouse

Men in boats about to capsize,
look to my light with longing.
Envy my firm footing.
Do not know whether they should hold on to
their wrecked ships or
swim to shore.

They assume I’ve always been here,
safe and dry.
They do not know about the storm so violent
that I could not distinguish the sea from the sky.
About the night I released my hold,
grabbed my baby, and swam
toward hope.

© 2011 Petra Martin

The fortress

The day I walked through the doors of Gifford Grade School at the beginning of third grade, I entered my sixth school. By then, my father’s career in the military had taken my family from:

Gifford was a Lake Wobegon sort of town. It had around 600 inhabitants, and we lived there for three years—long enough to put down roots. We caught fireflies, got lost in  endless fields of popcorn, and actually knew people where we trick-or-treated. We skied down snow drifts, became Cub Scouts and Brownies, and sang for the residents of the local nursing home.

Then, Dad retired from the military, and we headed west in the station wagon, towing a travel trailer behind us. I loathed the forever place to which my parents retired and missed Gifford terribly.

At 11, I was on my way to my seventh school, and something snapped inside me. I had said so many goodbyes over the years that I couldn’t bear the thought of saying any more. So I addressed the problem by building a fortress that surrounded and protected me. By preventing hellos, it would prevent goodbyes.

It worked. It kept me safe—and very lonely—into adulthood, and despite my best efforts, still exists today. Occasionally, someone breaches the wall, but it’s relatively rare, and I wonder sometimes what makes it so effective, especially now that I no longer want it to be.

Recently, however, I was minding my own business at a coffee shop, when I turned to find a stranger inside my battlements, fiddling with a cream pitcher. I had no idea who he was, or how he got there. We exchanged a few sentences over the course of the evening, and went our separate ways. I was shaken.

The stranger appeared inside the battlements several times after that, and each time I felt a sense of joyful recognition that was completely inconsistent with how well I knew him. Then, one day, he skittered under the portcullis just before it closed and declared his love for me from the other side.

What am I supposed to do with that? Leave? The fortress?

I am intensely and inexplicably drawn to the stranger. Can I work up the courage to leave these walls I’ve come to know so well?

And will he be there if I do?

Life, and how we move through it

As I walked through the forest on my son’s birthday yesterday, I reflected on how challenging life has been since the moment, 12 years ago, when he was born. At the same time, I’ve grown weary of thinking about how hard it’s been. Weary of feeling sorry for myself. Weary of My Story.

I realized that the past twelve years have felt like walking through chest-high water, which is something I used to do on purpose for exercise. There’s a much more efficient way to get through water. It’s called swimming.

Walking through the water of my life hasn’t exactly been a conscious choice. I do it because it’s all I’ve ever known. But I’m ready to find a more efficient and joyful way to move through life.

I’m going to sign up for swimming lessons.

Damsels, distress, and ethics

Like any young damsel in distress, I always dreamed that a knight on a white horse would rescue me someday. Didn’t matter what the distress was. Maybe it was my night to do dishes. Maybe I forgot to do my homework. Maybe my siblings were especially annoying that day.

Fast-forward to today, and I am actually experiencing real, grown-up distress. As always, I dream of being rescued and relieved of my burdens. But for the first time, I realize that it’s completely unethical to allow anyone to do it.

When you’re a damsel in distress, you’re in it for the rescue, not the knight. And that’s not fair to any man.

So I sent the knight away.

Using a compass instead of a map

I recently read a heretical book called Goal-free Living, and loved it. Among other things, author Stephen Shapiro advocates navigating life using a compass instead of a map, which I found especially relevant, given the fact that I created a tool whose very purpose is to help you access your inner compass.

Our first maps are given to us by well-meaning parents, teachers, clergy, and employers. They provide a bird’s-eye view that enables us to “see” destinations that may be thousands of miles away. Unfortunately, they cause us to become so destination-focused that we don’t see where we are in the moment. Compasses, on the other hand, give us a sense of direction, but don’t provide information beyond our line of sight. They keep us in the present.

Why would anyone choose a compass over a map? Because using a compass forces us to look within, identify the true north of our passions, tool up to pursue them, and follow where they lead. Using a compass means making room for synchronicities and serendipities in life. It means being alive, NOW, rather than postponing life until after our goals have been met.

I called this book heretical because ours is a very goal-focused society, and a book on goal-free living seems to go against everything that we believe in. Nonetheless, as I’ve spoken to others about it, I’ve encountered relief. Some have said that they live life in a goal-free way, but have felt guilty about it. Shapiro’s book makes them feel validated. Others have recognized that living goal-free is a more feminine approach that has been frowned on in our patriarchal society. They weren’t really able to put their finger on that distinction until they were exposed to Shapiro’s book.

I agree with that. Motherhood blew the map right out of my hands. I lived goal-free for a decade, picked the map back up earlier this year, and then another gust of wind came. Now, here I sit with my compass, feeling validated, excited, and scared all at the same time.

Being afraid–and liking it

Night before last, I had a dream in which I was speaking to a local author. “I just had a thought,” I said. “Maybe you can help me think it through. You know how some people love to be scared? They go to scary movies and pick out the scariest rides at amusement parks? I wonder if some people are like that in real life and just like to be scared.”

I’ve never sought out scary things on purpose, having found real life scary enough. I can only guess that people who deliberately expose themselves to frightening situations must feel safe in all other areas of their lives. No one experiencing the real-life horror of a concentration camp, for example, would queue up to see Friday the 13th.

Now, let’s say that we are eternal, and knowing that makes us feel completely safe as disincarnate beings. We can dip our toe into the sea of mortality whenever we want. Let’s further say that our sense of safety leads some of us to seek out the contrast of deliberately bringing scary situations into our lives when we’re incarnate.

“Am I one of those people?” I wondered. “Am I saying ‘yes’ to scary things just for the experience of it? If so, I’m ready to knock that off right now.”

This morning, while walking through the forest, my thoughts veered toward something frightening, and I stopped myself. “You’re making a choice, Petra,” I said. “You’re choosing to walk into the horror show. Why do you do that?”

I’m beginning to realize that most of the fear I’ve experienced  in life has been anticipatory. My scary pie chart would look something like this:

Enough of that. Here’s to staying off roller coasters and out of horror shows.

Changing lanes

The way I figure it, I spent about 200 24-hour days in traffic on State Route 520 from Seattle to Redmond and back over the course of 10 years. This commute bore the distinction of taking me across the longest floating bridge on Earth twice a day.

You see a lot when you spend that kind of time in the car. Little things, like the fact that someone glued a bottle of aspirin to the jersey wall between the east- and west-bound lanes. The way a road-striping crew painted a fresh yellow line all the way up to—and then beyond—a dead raccoon on the side of the highway. And a guy dressed as the grim reaper, standing silently at an intersection.

These things were entertaining, but one of my experiences became a metaphor that has helped me ever since.

During my commute, I was often frustrated to find myself in a lane that had come to a dead stop, while traffic moved briskly and efficiently in the next lane over. Eventually, I learned that I couldn’t switch to the lane I wanted to be in unless the traffic in my own lane began to move as well.

I learned that you can’t change lanes unless you’re moving.

The economy brought me to a halt, and I saw nothing but brake lights. This was especially frustrating because people were sailing by unscathed in the next lane over.

It took a while, but the lane I’m in has begun to move. It’s less than ideal. It’s nowhere near where I’ve been or where I want to be. But as I pick up speed, I also pick up the ability to make choices.

At some point, I’ll be able to change lanes. Or I’ll realize that the one I’m in now turned out to be the right one after all.