Tag Archives: cancer

The Artist at Our Wedding

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Jamie paintingThere are 3 watercolors hanging in my dining room, each signed “Jamie Calkin March 5, 2005.”  The first is a meditative scene under the white tent.  Just two wrought iron chairs sitting side by side atop a Persian rug, the river flowing in the background, everything poised for the wedding to begin.  The second depicts the wedding ceremony itself, the same tent now filled with about 30 friends and family members, bride and groom seated together, a pair of massive tulip poplars soaring above the scene.  The last painting is a scene from the reception, our blue kayak buoyed by white balloons, drifting around the pool while a cellist plays.

After Richard’s doctors told him that they could give him no further treatments, he surprised us all when he said, “I want to go home and I want to marry Ashley.”  Oh.  OH!  I told my sister, my stepmother and a couple of dear friends and damn if they didn’t manage to put together what we ended up hailing as “A Wedding In a Week.”  I mean, BOW DOWN, wedding gods, these ladies had it nailed (and one of them is only a lady in drag shows!).  My friend, Andrea, called me the day after Richard announced that we were getting married and said, “I only need to know two things–what flavor cake do you like and do you want to wear a tiara?”  Everything else?  HANDLED.  Those days of planning something happy were a magical respite from the quiet panic of leaving the hospital and flying home…well, to die.  We knew it but we weren’t saying it so let’s get married in the meantime.  Andrea even gave me a pair of rose-colored glasses to wear to the spa on the day before the wedding.  She understood–her mother had died when she was only 20.

We had swanky catering, a string trio, an Episcopal priest, wedding finery, a Cecelia Villaveces cake…all in a week.  The clerk of court even brought the license to the house with a witness so Richard wouldn’t have to go out.  All because someone knew someone who knew someone who loved us.  Magic.

When my friend, Katie Calkin, said, “Jamie wants to give you a painting for your wedding,” I was so touched.  I thought she meant that we would send him a photograph from the wedding and he would paint it for us.  But Jamie works in the moment, in plein air, with his watercolor kit, a stack of paper and wide open space.  So on the morning of March 5, 2005, when I peeked out the bedroom window to check on the hubbub in the backyard, I saw Jamie sitting in the grass, leaning against a crepe myrtle with his kit spread out around him.  That was the first moment that brought me to tears that day.  Why?  Because Jamie was so happy.  He radiated joy, an artist in his element, on a sunny day, doing what he loves best.

Katie and I had known each other through work for a couple of years, but the first time I met Jamie was at a planning meeting for a quilt project in memory of their son, Abraham.  Abraham was born with a heart problem.  He spent his entire brief life in intensive care, swaddled in love, but his heart just wasn’t strong enough. In the aftermath of his loss, the people who had loved him wanted to mark his life.  It turned out that several of the Calkins’ friends were quilters, so they hatched a plan to honor Abraham and ease the fretful hours of other parents with children in the NICU.  They lined up volunteers with the goal of making one crib-sized quilt for each day of Abraham’s life.  The quilts would be donated to the neo-natal intensive care units where Abraham had spent his life.  All they needed was 50+ people to make a quilt.  Never one to let sensibility overcome my rampant enthusiasm, I signed up to make a quilt right away…even though I didn’t know how to sew.

I learned to sew, along with a few others, and I made a rail fence pattern with fish called “Twinkle, Twinkle, Little Starfish.”  Katie made a quilt for her son.  Jamie made a quilt with dinosaurs.  Abraham’s grandparents made quilts.  Strangers made quilts and Abraham’s Aunties made quilts.  When the project was finished, the quilts were displayed in the hospital lobby for one day and we all got to marvel at the beauty of what love for this fragile boy had brought into the world.  Taking heartache and turning it into kindness.  The first time I saw Jamie, he was hollow and it seeped out of his eyes.  The morning of the quilt show, I saw him smile.  The morning of our wedding, I saw him at peace with the world.

Seeing Jamie there in the sunlight on my wedding day gave me hope.  Not that Richard was going to get better.  Not that we would live a long and happy life together.  It simply gave me hope that I would make it out the other side.  There was Jamie, like a messenger from some other day in the future, when I might be able to sit in the sun and feel at peace with the world.  wedding march

He and I exchanged letters that night that crossed in the mail.  I thanked Jamie for giving me hope that I could be happy again.  He thanked us for including him in the day and confided that he had felt Abraham there during the ceremony.  I hope he was there and I hope he had two pieces of cake.

Katie was one of the first people I talked to after Richard died.  I told her that he had been thinking of Bermuda, a place where we had been so happy.  I said, “Abraham would be three now–old enough to learn how to swim.  I hope he and Richard are at the beach today.”

jamie pool painting

I’ve been thinking about Katie, Abraham and Jamie a lot this week because I stumbled upon a blog called “Being Everlee’s Mom.”  It’s an exquisitely written record of fresh heartbreak.  The author and her husband lost their infant daughter, Everlee, last month.  I’m so glad that she’s writing.  The only way out of grief is through.  It helps when you can look around and see other people who are a little farther down the road.  They turn back and wave to you and say, “This way.  Follow my voice.”

Please visit Jamie’s website to see more of his work here.

Expiration Dates

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It’s finally March, my least favorite month of the year.   Really, it’s just one day–March 16th–that puts the stink on the whole month.  March 5th has its pleasant memories from our wedding, if I don’t look at pictures and see how sick Richard was by that day.  March 6th was the anniversary of when we met (more on that later in the week).  But there’s March 16th, 6:25pm, casting a pall on the whole month.

I was in the grocery store this evening.  Reached into the milk case to get two gallons for my slurpy baby boy…and I was stopped in my tracks by the stamp on the jugs.  March 16.  Expiration date.

milk jugs

The woman next to me was curious about why I was photographing the milk cooler.

Two years ago, my friend Elizabeth and I were pregnant at the same time.  She posted on Facebook one night:  “Y’all!  I just bought milk with an expiration date AFTER my due date!”

I totally got what she meant.  Something as real and institutional as the mandatory expiration date on milk makes the hazy future seem credible, like it has to happen if you’ve already got milk.  The day WILL come when you’ll have a baby and milk in the fridge!

Part of the endgame of cancer is not knowing what each day will bring.  Richard refused to accept that he was dying.  If there was a .000001% chance of living, he seized it and ignored the rest.  His lead doctor at Johns Hopkins, Dr. Judith Karp, is a world class leukemia specialist and also a kindly grandmother.  When it was time for the family meeting with Richard, when all of his doctors and nurses gathered in the room so that the doctors could tell him that there were no further treatments for him, Dr. Karp sat on the edge of his bed and put her hand on his knee.  After so much time in hospitals, I knew the significance of that–doctors don’t sit on the bed and touch the patient like that on regular rounds.  She was doing that because he wasn’t going to be a patient any longer.  Even in the face of all that NO, Richard said, “If I go home and beat this fungal infection, can I come back?”  Dr. Karp took a slow breath then said, “Absolutely!” as she patted his knee.  Even she got choked up.  The only thing she could give him at that moment was hope in a hopeless situation.  He insisted on hope and she made space for it.  I will always respect her for that.  That was simple kindness.

So what’s my point?  I don’t know.  Even milk can’t stop the inevitable?  Something like that.

When we came home from Hopkins, I honestly didn’t know if it would be for three days or three months.  It turned out to be three weeks.  Richard kept things from me at the end–he didn’t burden his family with the hopeless messages that his doctors were giving him.  I found out how hopeless things were when I called his local doctor on a Thursday morning and the doctor said, “I told him on Monday that it was time to call hospice.”   Oh.  OK.  Thank you.  I hung up the phone and sank down the wall.

He died that night.  In March.

We make so much of the firsts–the day we’re born, first steps, first birthdays, first day of school, first kiss, first love, first job, first home–because the lasts are so hard to see coming.

The River at Night

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"A Moonlit Scene with a Winding River" by Samuel Palmer. Watercolor, circa 1827

“A Moonlit Scene with a Winding River” by Samuel Palmer. Watercolor, circa 1827

The river is running high tonight, in such a swirling rush that I can hear it from the deck.  When it gets this swollen, after many days of rain, it can jump the bank and come all the way up to my fence.  It’s no worry to me, way up on this hill, but when the water comes all the way to the fence, it blocks the path of the coyotes who sneak through our backyards.  It blocks the urban deer, too, but they don’t complain.  On a few nights like this, I’ve heard the urgent, confused yipping of the coyotes and it shudders my skin.  A wild thing that had been invisible and hard to imagine so close to my home–and suddenly, it’s right here and it’s always been here.  That’s the kind of thing I think about when the river runs high.  The quiet things that reveal themselves, shaken loose by the ominous roar and rush of the river.

I don’t know if you’ve heard about Tripp Halstead but his mother is on my mind tonight.  Tripp was hit by a falling tree branch back in October and he’s been fighting his way back to life since then.  He’s two.  Like Carlos, who’s asleep in his bed with Boop right now.  Tonight, his mother, Stacy Halstead, posted about how she can’t turn on the news because all they talk about is the rain and the trees that are falling from loosened roots.   She’s been without the internet to distract her while she listens to her only child moan in pain.  She mentioned the claustrophobia of passing the day in an 8 x 8 darkened room–and BAM, I was back there, in the end of February 2005.

I spent a lot of days sitting in a darkened room.  Richard was suffering incapacitating headaches and any amount of light drove him out of his mind.  I honestly can’t remember what was causing them (apart from the cancer); it embarrasses me to admit that I don’t remember that detail, like I wasn’t really doing my best, like I have let down my guard and forgotten something, even something terrible.  But it’s OK to forget some things.

After about a week of the headaches, they started giving him radiation to his brain and it helped some.  But before that, there was the room.  We were staying at the guest house on the campus at Johns Hopkins and I was taking care of him.  I hung blankets over our one window and didn’t turn on the bathroom light until I was inside.  He wore sunglasses in the dark and tried not to move at all.  I couldn’t touch him or sit on the same bed for fear of jarring his brain around.  I sat in the dark around the clock.  I’ve never felt so helpless and now that I’ve typed that I need to stop and cry for a bit.

Because here’s the other thing that shook loose tonight.  My friend, Catie, shared a quote from Jack Kerouac:

the only people for me are the mad ones, the ones who are mad to live, mad to talk, mad to be saved, desirous of everything at the same time, the ones who never yawn or say a commonplace thing, but burn, burn, burn like fabulous yellow roman candles exploding like spiders across the stars. 

Those misery-filled days in late February?  When I was sitting so still and helpless in that darkened room?  I was reading On the Road.  I had a tiny book light that I kept pointed down the page and I barely cracked the book open so the light wouldn’t escape to bother Richard.  I read it if he slept.  Sometimes I read it under a towel.  When Richard wasn’t able to sleep but he wanted some oblivion, he would ask me to talk, to keep telling stories to distract him from what was happening.  I just kept talking.  I told him all about the book and Neal Cassady and the road trip and everything I could remember about the Beats and San Francisco and….anything.  I talked about hubcaps and chickens and Irish wolfhounds and sewing.  I recalled adventures we had had on our own travels.  Anything that popped into my head (except food, no talking about food, and no making him laugh).  I was mad to talk, mad to be saved, desirous of just one impossible thing.

I read to him from the book.  This man, this fearless man who had taught me how to step out into the world and follow my own star.  I sat across from him as he was dying and read On the Road.

These are the things I remember when the river runs high.

Boop.

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boop

If I count backwards through the gifts that Richard gave me, they all end with the house and everything in it, left to me in his will. Eleven days before that, he gave me a band of diamonds. The night before that, two silver bracelets at the rehearsal dinner. Then back three weeks more to Valentine’s Day 2005, when he surprised me in his hospital room with a box of chocolates and a card tucked between the hands of a teddy bear wearing a little sweater with a red heart on it.

I gave him a jar of heart-shaped ginger snaps that year, because ginger is good for nausea. He was touched, because the jar was one I had filled with homemade truffles for him on our first Valentine’s Day. We laughed at the memory of my attempt at a Martha Stewart recipe. The truffles had turned out delicious, but looked horrifyingly like cat turds—leave it to me to mess up a recipe with only two ingredients.

That cookie jar stayed with him at Johns Hopkins while I brought the bear home with me. My other teddy bears had names—Theodore, Louis, Edward—but I didn’t have a name for this one. Andrew? No. Hopkins? No. Poe? No. I was a little too grown up to sleep with the bear tucked beneath my chin, but I didn’t want him to be lonely. I set him atop the stack of gratitude journals on my nightstand and slept alone.

A week and a half later, I was back in Baltimore to bring Richard home. We packed up the jar of untouched ginger snaps—he wasn’t eating much by then—along with his other things. Back in Athens, it landed on the dresser top, but was soon covered over by the clutter of illness.

He died on March 16th.

I couldn’t throw away the cookies. I couldn’t name the bear, either. I talked to him sometimes. I traced the shiny surfaces of his eyes with the tip of my fingers to keep them bright. I dusted his shoulders every few months. I kept him out of reach of the dog who liked to eviscerate stuffed animals. When she died the next spring and I got an even bigger dog who liked to shred things, I kept the bear safely out of harm’s way. He just never got a name. There had been too much going on when I got him to focus on finding his name and now it seemed disingenuous to go back and paste a name over that absence.

The first year went by. I cleared the clutter of illness but left the jar of ginger snaps on the dresser. Sweetness and memory, growing stale. February 14th rolled around and I realized that, for the first time since I was 19, I didn’t have anyone to send a Valentine. I left work early so I could throw myself onto the bed and sleep until the day was over, but there sat the cookie jar and I made up my mind to deal with it.

I sat in our hammock down by the river and as the afternoon sun bounced off the water, I opened the cookie jar and let myself cry as the smell of ginger rose out of memory and into the day. I reached in and took out a heart-shaped cookie, held it in my palm and spoke aloud one good memory from my life with Richard. “Thank you for this house.” Then I threw the cookie into the river for the fish to eat. Another cookie, another gift. “Thank you for that Valentine’s Day that you ripped the ugly wallpaper out of the bathroom while I went shopping.” Into the river. “Thank you for the time you brought me roses and said that you knew you should give me red ones for love but you got the pink ones because they smelled like real roses.” Into the river. “Thank you for teaching me how to paddle a kayak.” I went through dozens of cookies, a hundred memories. With every memory, every gift, I felt lighter, as my spirit rose up as the cookies in the jar dwindled. Then I was down to just two cookies and it was time to get to the heart of the matter. I pulled a cookie out and cried for a while. “Thank you for loving me.” I threw that cookie as far out into the river as I could, into the current of the middle channel, into the deep. A few clean breaths and I reached in the jar for the last cookie. It was broken into two pieces, right down the middle. I laughed. “Thank you for this broken heart.”

A year later, I was pregnant on Valentine’s Day, just beginning to feel the butterflies that would become Vivi, and I had a new love to fill my mending heart. I passed the bears given to me by high school and college boyfriends on to Victoria, but not my Valentine’s bear. He still sat on the nightstand, keeping watch over the bassinet, for Vivi and then three years later for Carlos. After Carlos moved to his own bed, the bassinet sat empty. Over these years, the stack of gratitude journals had grown, too, and the bear’s head was perilously close to the light bulb. I moved him into the bassinet. He sat there for another year, still without a name, still never far from my side.

One morning, all five of us were piled in the big bed for family snuggle time and someone did something to someone else and Carlos ended up crying. I tried to distract him with…there was nothing in reach save my pen, a journal, a kindle and a glass of water. Vivi grabbed the bear and before I could remind her that he was mine and special to me and not to be touched, she waggled him in Carlos’ face and the crying stopped. I decided to get over it, to let life happen as it would. I showed Carlos how the bear’s arms could be opened but the tiny magnets in his paws would bring them back together. “See, baby?” I said as I pulled the arms apart, then as they popped back together I cried “BOOP!” He dissolved into giggles. I repeated this again and again and each time I squealed, “BOOP!” to his delight. Carlos took the bear and squeezed it tight like babies do. My heart lurched and sank as I watched my special bear being treated like an ordinary toy after six years on the shelf. But when my darling boy pulled the arms apart then whispered, “boop,” I knew the bear finally had a name.

One day, if Carlos counts backwards from his bear, past my broken heart, he’ll find Richard too. In a family, every story is like that. Sometimes one generation has to hold on to something for the next until it can be known by its name.