Tuesday, December 20, 2016

mysterious now

Today my 9:40 appointment didn't show, so I texted Heather to ask how Mike was. I had been so worried. He went back to New York yesterday, without me, for a procedure today and then treatment tomorrow.

She told me he had just come out, that he was fine, it went well. She described the waiting area, the hospital. She gave me the doctor's report.

I was sitting at my desk in a small windowless office in Pennsylvania, hunched over my phone. That moment happened. But as I read and reread Heather's text, other moments happened too.

All the long minutes in waiting rooms; all the strange, too-bright hospital spaces. The port, biopsies, PET scans, radiation. The waiting. The white/gray palette, the fluorescent lighting. A doctor walking at a clip across the rows of chairs to give his report. Me, suspended in molasses, an odd mix of breathless anxiety and leaden limbs, struggling to find a breath. His manner is particular to certain kinds of specialists and surgeons; it somehow combines excellent eye contact and intensity with a clear message: please allow me to manage this exchange so that we can complete it within about six minutes. Don't ask too many questions. Good? Good.

Oh, how could it be Heather there, and Mike there, and not me?  I know that moment. It's in my bones. It's a combination of moments, just beneath the surface, ready to bubble up and break into my right now with a simple glance at my phone.
We got our Christmas tree about a week ago, and spent Sunday afternoon pulling out decorations. Some of you may remember that last Christmas Mike was just completing what we thought was his one and only awful treatment, a chemo-radiation-chemo sandwich that made for the most challenging fall this family had ever known. We were living in a rented house with many borrowed things, and didn't have access to our holiday decorations.

So friends and family sent us ornaments: beautiful angels, stars, Santas, snowflakes, woodland creatures, elegant glass spheres.

Boy, was that overwhelmingly generous and kind and Christmas-miracley. We opened so many little packages last year. I labeled each ornament with the friend's name who sent it. The children loved it. Our tree was so beautiful.

And those are the ornaments we unwrapped last week. Usually a dig into the box of ornaments is a sweet journey through so many times and places: my second grade class, Frances's preschool, Mike's first Christmas, the year Gabriel was born. But this year we traveled to just one time, one place: a year ago. A gentle, worn-out time. We thought we'd made it through the worst of it. We knew we were laid low; we knew our friends and family were with us. We were looking ahead with full hearts to a time of recovery and healing.

We didn't know what was coming. It's been a hard year.

Those ornaments exacerbate the absurdity of living another cancer Christmas. How has it been an entire year? How can the way we were, the way we are, the way this year has unfolded, all be true? How can we endure it, surrounded by these achingly poignant symbols of hope and love and healing in the living room?

Early in the decorating process, Beatrice pulled out the popsicle stick ornament pictured above and gently unwrapped it, laying it on the rug. She looked up at me.

This ornament makes me cry, she said.

Why? I asked.

Because. It's so beautiful.

Then I kneeled down with her. I turned it over. 'Annie' was written on the back in black marker. She's a teenager at our church in Annapolis. Every Monday night we used to go to church and the kids would practice acolyting or singing and often a craft project would be going on in between activities. We had been the occasion for a craft project last Christmas. Annie and others had made popsicle stick and glitter snowflakes and sent them to us in a big box.

I sat admiring it with Beatrice. Mike sat down in the chair next to me and rested a hand on my back. I leaned my head on his knee and cried. She asked me why I was crying.

Well, duh, Beatrice.

Because it's so beautiful!

So many nows are achingly vivid as my family enters a second turn of the seasons living with a terrifying disease. The children's faces are exceedingly beautiful. Their bickering, too, is unbearable. The shape of branches against the evening sky is so stark. The yellow leaping fire in the fireplace is extra compelling. The Christmas music is more heartrending than ever.

These saturated moments linger, slide together, overlap, and make time into something else. Something more mysterious. How can it be that that was yesterday, a week ago, a year ago? I cannot begin to fathom it.

I finished reading Little House in the Big Woods with Beatrice tonight. We've shared those beloved chapters with various listeners over the past few nights: Frances and Gabriel, Tessa and Annika next door, the dogs, Kate the babysitter. Everything grows still. Part of the magic of the book is the slow, immersive quality that marks Laura's experience of time; reading it aloud is a way to participate in that alert, attuned stillness.

She intuitively understands something about the way time feels sometimes: a moment can be so full of itself. It overflows with realness. That kind of vivid experience can invite you further in, and somehow also make you notice it, linking you to moments like it that have happened before and will happen again.

Laura is inside and outside time. The immersive moment can be so extraordinary that it invites her to stand back and marvel.

The book begins in the fall, and ends in the next fall, just as winter is approaching. Just like now.

Pa plays his fiddle as Laura and Mary fall asleep. In the last passage of the book, he plays Auld Lang Syne. Laura asks him what the days of auld lang syne are, and he tells her they are the days of long ago, and then tells her to go to sleep.

But Laura lay awake a little while, listening to Pa's fiddle softly playing and to the lonely sound of the wind in the Big Woods. She looked at Pa sitting on the bench by the hearth, the firelight gleaming on his brown hair and beard and glistening on his honey-brown fiddle. She looked at Ma, gently rocking and knitting. 

She thought to herself, "This is now."

She was glad that the cosy house, and Pa and Ma and the firelight and the music, were now. They could not be forgotten, she thought, because now is now. It can never be a long time ago.

Monday, December 5, 2016

living the dream

When we first arrived in Lancaster last summer - disoriented and tangled in a number of secondary crises, all set in motion by Mike's rare cancer diagnosis that had just hit us like a truck, throwing every part of our lives into terrifying, uncertain disarray - the sky was too blue.

The squirrels chattered too frenetically. The sun shone in my eyes. A car alarm would vibrate inside my skull. Black telephone poles were ominously stark against white clouds. The world was saturated in such a way that perceiving it with my senses hurt.

And now, over a year later, as I come to the end of a time of relative stability that the clinical trial Mike is currently on has afforded us, the world has become more vibrant again. But not in an aggressive, harsh, more-disaster-shall-rain-upon-you-momentarily kind of way. More like golden autumn sunshine at four in the afternoon, illuminating everything and making it so beautiful you could cry. Every day, dry leaves skitter and scrape across pavement, damp wind chills my fingers gripped around the handlebars of my bike, heavy gray clouds let shafts of light through in a fast-moving sky, faces of strangers brighten in shy welcome as we pass on the street, and all of it is beckoning to me: notice, notice, notice. See this world. See this abundance.

Moving through one's days with so little protection can hurt, but not like it did when I was in shock last summer. It's the hurt of a full heart, the ache of loving a lot. 

This fall we settled into a new living situation in my mom's home, and Mike settled into a new treatment protocol, going back and forth to New York every two weeks. I started working again, doing what I love. We found a sweet babysitter. Dear friends have come to visit. We have neighbors with whom it is a joy to share everyday life. The kids got involved in school and activities and friends.

And compared to past chemotherapy regimens, this trial has been blessedly easy on Mike. His hair has grown back, he's put on weight. He has energy for things like taking Gabriel to basketball and going out on a date with me and telling the kids to pick up their toys. In short, for the first time in many many months, our lives have felt predictable, full, connected to others. Normal.

But the goal of this treatment is to get his cancer into remission so that he can have a stem cell transplant. Right back into battle. Soon he will have a PET scan to see if he's ready for that step.

So December, with its scans and treatment decisions and transitions, has been looming. This autumn idyll cannot last. In that sense, life isn't normal at all. It's a respite. We all know that things will get really hard and scary again.

But this not-normal normal life, this moment bookended by a very hard past and a very hard future? It tastes so good. Over the top good. Exquisite!

Maybe it takes knowing that everything really can turn upside down in an instant to fully appreciate the miraculous right side up quality that most days quietly offer.

The feel of Mike's warm back moving gently in sleep next to me before I get out of bed. The smell of coffee. The way Beatrice says good morning Mama and smiles and reaches for me before she even opens her eyes. The letter from a friend unfolded on the desk, asking to be reread. An emoji-laden text exchange with the babysitter about piano lessons today. Right side up, right side up, everywhere I look.

I recently added one extra day of work a week, back at Franklin & Marshall. Last Monday was my first day seeing students again. As I was locking up my bike before heading in that morning, one of the psychologists on staff crossed the parking lot and called out to me.

Biking to work!! Meagan, you're living the dream!

I looked up at her and smiled.

Yep, I said. Pretty much.