Driving the Camel: Installment #15

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Heading South

We arrived at the beach house, where Marianne and her family had returned for the weekend. We gathered around the kitchen table telling stories of our adventures, but I already felt removed from the day’s events.  My thoughts turned inward as I anticipated saying goodbye to Garth. I knew that when the iced tea was gone, that Garth would be driving back to Clair and his farm, and that I may never see him again.

When the time came, I dragged my feet as I walked him out to his car.

“You know I wouldn’t have taken just anyone caving,” Garth said.

“Yeah, you said you hadn’t done it in a long time, What made you say yes to me?”

“It was just something about your voice,” he answered. “I liked your voice and your spirit.”

He surprised me with a hug so hard that I thought I might break in two.

As he drove off down the beach road, I thought about the many types of love we experience, if we are lucky, throughout our lives. The depth of feelings generated by  the unexpected connection forged with Garth was not unlike some of the strong emotional currents I have often felt with children passing through my care in hospitals. I’ve often wondered if it’s just me. Do I fall in love a thousand times too easily? Or do others feel the pangs and elation that I do when my spirit resonates with someone else’s, stranger or friend, child or adult?

One thing for sure, it was not easy to part with such a wonderful new friend and to leave the beauty and peace of Lang’s Beach.  But leave I did. Matt and his family awaited me in Christchurch and Naomi waited in Kaikoura. Naomi had been another guide on our kayaking trip. She’d since visited us in New York, and now it was time to check out her stomping grounds on the South Island. Then, hard to imagine now, I would be heading home.

The plot twist for this leg of my  journey was all my bad. I managed to miss my plane by misreading my itinerary. As Marianne and her husband drove me to the airport, I figured out the mistake. My heart sped up as I realized that there was no way in hell I was going to make my plane. Marianne pulled up across the street from the terminal and popped the trunk. Our goodbye was hasty as I grabbed my suitcase and futilely ran across the street and through the glass doors, trying to breathe deeply and slowly to calm myself down.

The ticket agent smiled at me as I struggled with my suitcases and my passport.

“Don’t worry, you can just hop on the next plane in an hour.”

“How much will that cost?” I asked warily.

“Nothing. This isn’t a problem,” she answered.

And much to my amazement and relief,  it wasn’t. Catching the next departure, I settled into a window seat on the small commuter plane. It was a short flight through bright afternoon skies,  the South Island rising up to greet me as the plane touched down in Christchurch. A shuttle bus gave me a glimpse of the city as it made multiple stops on the way to  the hotel, a sleek, modern box not too far from the airport. I splurged on room service for dinner and then sank gratefully into the clean sheets, setting my phone alarm for early the next morning.  

The ringtone of Natalie Merchant’s Wonder wafted into my consciousness at 7am. I was so excited to see Matt, and I also wanted to make sure that I had time to eat breakfast and write in my journal. A few hours later, as I waited for  in the lobby, I wondered what it would be like to hang out with him and Helen. Would we click the way we had out on the Strait? Would it be awkward? How much time could they spend with me and how much time would I be alone? I assumed they were busy people between work and having two kids. That relentless anxiety of being on my own crept in, smudging over the recent accomplishments of  my alone time at Lang’s Beach.

But all worries evaporated when I saw Matt. I hugged him unabashedly and our friendship commenced right where it had left off six years ago.

Matt’s mother-in-law and his twin eleven month-old daughters awaited us in the car. We toured Christchurch, stopping at the makeshift temporary church that the diocese erected when the 2011 earthquake rendered the original Christ Church uninhabitable. 185 People died in the second deadliest earthquake in the country’s history, and the city had far from recovered. The devastation of the city was heartbreaking. Two years following the earthquake of 2011 and there were still many empty lots filled with rubble and ruined buildings gaping in despair. Matt said it will take twenty years to rebuild.

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We ate lunch in Lyttelton before we followed the winding road to a sweet, small town on the coast. The neighbor’s cottage abutted  Matt and Helen’s property on a quiet country road flanked by horse meadows and a dune- fringed beach. The cottage overlooked an enchanting garden, fully equipped with a tub and a fire pit underneath for outdoor bathing.

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Worries about being lonely were unfounded and quickly soothed. The cottage provided the perfect balance of privacy and proximity to Matt and Helen’s cozy home.  A routine quickly formed – tea and cereal in the garden, accompanied by birdsong, and the occasional squawk from the neighboring rooster. I meditated and journaled before skyping in with Mark. Then, I would close up the cabin and trot around the corner to Matt and Helen’s house, hitching open the quaint latched gate to their yard, and ruffling their dog’s ears as I passed her on the porch.  

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Over the week, I enjoyed witnessing the rhythm of their family life. They had a brilliant schedule for the twins, with Matt taking on the lion’s share of parenting while Helen worked as an administrator at the airport. The presence of Helen’s mom made it possible for Matt to spirit me away for some outdoors sightseeing, which was such an unexpected treat for me.. Matt had some adventures lined up  for us and we discussed the possibilities over dinner that first night. We settled on plans for more cave exploration and a day trip to Arthur’s Pass in the South Andes Mountains.

Our drive out to the mountains gave us plenty of time to catch up on each other’s lives and get to know one another better. Much like this New Zealand adventure, my camping trip on the Johnstone Strait in British Columbia with Matt had been an amalgamation of firsts for me: first attempt at ocean kayaking, first camping trip, first vacation with a friend without Mark along. Like a younger version of Garth, Matt was a skilled guide accustomed to amateurs. He knew how to meet me at my skill level and scaffold me to higher performance and more endurance. His patience, kindness, and sense of humor boosted me out of my comfort zone, and I was able to withstand eight-hour paddles in rough water. In a few short days, I went from tentative paddling in a double kayak to coasting solo on the wake of a giant cruise ship, yelling “Yeehah!”

 

During my cancer treatment, I’d recalled my initial fears of that adventure and how I had faced them with Matt’s support. The memory of how far I had come, the confidence in my body, and the strength that I developed on that kayaking trip, all became a reminder for me as I faced scary firsts in treatment. I told myself repeatedly that I could face the unknown and do scary things with the right support. Meeting up with Matt on the other side of the world now, after surviving cancer, felt like coming  full circle. Our conversations on the mountain drive gave me the opportunity to thank him for all he’d done for me back on the Strait and explain how it reverberated throughout my medical experience.

A panoramic view of mountains, foothills, and clouds surrounded us, as we pulled into the parking lot adjacent to the cave trailhead.  I grabbed my gear and headed to the public bathroom to change into appropriate caving apparel. Matt had supplied headlamps, neoprene gloves and booties, fleece leggings, long underwear and “jumpers,” waterproof outer gear, and woolen hats. As I pulled on my layers, I thought about the trust I placed in him to keep me safe, first on the Strait, and now entering into an underground cavern. I had trusted the doctors at the hospital as well, as I followed the dark pathway of their many-layered regimens for ridding my body of cancer. Garth came to mind too, and how he’d met my trust with so much appreciation, respect and humor.  A synergy between vulnerability, trust and risk taking unfolded before me in all of these experiences. The Universe was asking me to do my part, while supplying all the necessary support in order to make all things possible. I strapped on my headlamp and headed out to meet my next adventure.

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Dear newcomers to my blog,

Driving the Camel is a memoir that I am publishing as a serial on this blog. It follows my adventures as a child life specialist during a transformative year of my life when I battled breast cancer and travelled the world. It includes reflections on my past work as a child life specialist, my personal life and stories of the wonderful people I met on my travels. You can find previous chapters in the side menu categories (or scroll down on mobile devices) under “Driving the Camel: Adventures of a Child Life Specialist.

Driving the Camel: Installment #13 Abseil

 

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Dear newcomers to my blog,

Driving the Camel is a memoir that I am publishing as a serial on this blog. It follows my adventures as a child life specialist during a transformative year of my life when I battled breast cancer and travelled the world. It includes reflections on my past work as a child life specialist, my personal life and stories of the wonderful people I met on my travels. You can find previous chapters in the side menu categories (or scroll down on mobile devices) under “Driving the Camel: Adventures of a Child Life Specialist.

Abseil

I lay in bed that night, feeling unready to let this day be the last chapter of the Deb and Garth adventures. I thought about love, and how strange it was to feel my heart so full for people I’d just met that day. I was hard to put understand the connection and affection I felt for Garth. It was like I’d known him for years, or maybe even in another life.

I phoned him the next morning.

“I know I am not ready to abseil into a cave and swim out,” I said. “But would you be willing to give me a ropes lesson, so that I can try some abseiling in the light of day?”

Garth readily agreed and we set our sights on Saturday. That would be my last full day on the Island before I would head to the South Island for the last leg of my journey. That morning he picked me up and we drove back to the cave, both of us in high spirits and joking. He entertained me with a story of an intruder who’d awoken him the previous night.

“I heard this noise and I figured one of the chooks had gotten into the house again. So, I followed the sounds and opened the bathroom door, and there was a damned possum in there, hissing like it was going to eat me alive.”

“What did you do?” I asked.

“Well, I just sat myself down on the floor and started to sing it a lullabye. Then once it calmed down a bit, I got myself a blanket and tossed it over it and carried it outside.”

“So what you’re telling me is that you’re a kind of possum whisperer,” I laughed.

As we neared the turnoff for the cave, I decided it was important to be honest with Garth.

“I just want to tell you something. I am terrified of heights. I get vertigo, my knees turn to jelly, and I feel like throwing up.  But it is something I really want to face it today. I want to abseil.”

“Everyone is scared when they do this for the first time,” he said. “The difference between boys and girls is that girls are more likely to admit they’re scared.”

I hopped out of the car to get the gate, and then followed the car into the pasture. It was another perfect day, not a cloud to be seen and a warm breeze tickling the grass. Garth popped the boot and hauled out a tangled mass of ropes and gear.  I grabbed a helmet and secured the strap under my chin.

“So first, I’m gonna teach you a bit about tying knots. When it comes to abseiling, you’re only as safe as your knots.” He nimbly worked a small rope into the shape of a harness, telling me a story as he went about rabbits and holes and foxes. As quickly as he had fashioned the harness, he undid the knots and handed it to me.

“Your turn.”

I fumbled with the rope, trying to recall the story and moves. He watched patiently and guided me with a few hints now and then. It took more than a couple of tries, but he seemed in no hurry. When he deemed me ready, Garth helped me step into the homemade harness. We practiced on flat ground first, tying the ropes around a sturdy tree. Garth’s big  hands moved efficiently, as he hooked my harness to the rope and showed me where to hold on, and the art of leaning back and playing out the rope in my right hand.  

“Keep your feet shoulder width apart to maintain your center of gravity. Never let go of this rope without securing it. Here is how you hitch it if you need to free up your hands.”

His instructions were clearly demonstrated, but the tasks were unfamiliar to me, as I struggled clumsily with the equipment. He patiently guided me through each step until he felt comfortable with my technique.

Only then did we make our way up the wooded slope slanting back over the mouth of the cave. He hauled the heavy ropes and I did my best to keep up with him. We reached a plateau and Garth led us to the precipice of the cliff. We stood directly over the entrance to the cave, about 80 feet above. I looked down at the vertical rock wall, which we would traverse with the ropes. About 10 feet back from the edge, there were several stakes buried deep in the ground, remnants of previous forays over the cliff. Garth securely fastened two lengths of rope to the stakes.

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“How do you know these are secure,” I asked, not fully able to trust.

“Because they go down about six feet into the ground” he said. Good answer.

I stepped into my harness and prepared for my descent. 

“Don’t look down.” I told myself. “You can do this if you look straight ahead.”

Garth lowered himself backwards first. From there, he coached me as I made my first tentative steps in his wake.

The harness felt like a flimsy string cutting into me, rather than a secure perch. I gripped the rope with all my might, terrified that my weight would make it yank from my grasp.

“Easy does it,” came Garth’s voice from below. “Widen your stance. Lean back until your heels make contact with the wall.”

I did as I was told.

“Now take a step down,” he instructed.

Somehow, I thought he meant for me to look for a purchase in the wall. I looked down and spotted a passable crevice. I took a deep breath and jumped towards it, letting out the rope as I scrabbled for a foothold.

“That’s not what I meant,” he said, laughing. “Just walk down the wall one step at a time.

The jump had shot adrenaline through my veins, and my heart began to pound. My excitement was evaporating quickly as I scanned the lip of the cliff that was now about two feet over my head. Just like the plane ride, there was no going back. The only way was down and I was frozen, unable to go any further.

“I am panicking,” I told Garth. “I don’t think I can move.”

“Just hold on a minute. I’ll be right there.”  

He quickly navigated his way up the face of the rock to where I clung to my rope in a death grip. He steadied himself beside me and smiled.

“Let me tell you a story. The Dali Lama had this doctor. They were discussing health and the doc said to him, ‘You know what is wrong with people today? People today forget one very important thing. They forget how to breathe. And he took a deep breath in and out with the Dali Lama. And then he took another one.’”

As Garth spoke, I followed  the emotional stepping- stones of his story.  I breathed deeply and after a few moments I felt my panic begin to subside.

“I think I’m okay now.”

“All right, then. Let’s do it.”

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Garth returned to his spot below me. I took one more long, deep breath, set my feet shoulder width apart and began my descent. From there on, the exhilaration returned. I only had one moment when I lost contact with the wall. I spun in a circle, my feet kicking out for contact.

“I don’t like this! I don’t like this!” I squealed.

“You’re all right!” Garth called up, laughing at my distress.

His humor made me relax. He wouldn’t be laughing if I were in any real danger. I let the rope out until my feet felt the wall again, and then I walked backwards down the wall with ease.

When my feet finally touched the ground, I shouted “I did it!”

“Yes you did!” said Garth.

abseiled

Driving the Camel: Installment #12

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 Alpacas and Chooks

The house where Garth and Clair had recently retired  perched on top of a gentle hill, their farmland spreading out below. Cattle chewed grass by the side of a pond surrounded by cattails and high grass. As we pulled into the unpaved driveway, a black lab with a greying muzzle wiggled in delight as she approached the car. A great blue heron  perched on their well pump. It didn’t ruffle a feather as we passed it. Three alpacas peered at us from behind a fence. I turned to Garth.

“Are you sure Clair won’t mind being surprised by an unannounced guest?” I asked.

“Clair loves guests!” he bellowed. I wondered if she really did, or if Garth might be a bit clueless about the stress that unexpected guests can put on a wife. But the moment I stepped into their home, I could see he was far from clueless. Continue reading

Driving the Camel: Installment #10

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Dear newcomers to my blog,

Driving the Camel is a memoir that I am publishing as a serial in this blog. It follows my adventures as a child life specialist during a transformative year of my life when I battled breast cancer and travelled the world. It includes reflections on my past work as a child life specialist, my personal life and stories of the wonderful people I met on my travels.

Cave Man

One morning mid week, I was struggling to figure out the electronics of the kitchen stove. The electric teakettle was easy, but I couldn’t figure out the touch buttons on the range to save my life. I reached for a book of manuals that Marianne kept amongst the recipe books. As I opened it, a small slip of paper floated to the floor.

It said simply, “For cave tours, call Garth” with his number scribbled in pencil.

“This is no accident,” I told myself. I had always loved caves, at least from the standpoint of a visit to a tourist trap in Bermuda when I was 11 years old.

I dialed the number and was greeted by a robust voice,.

“Garth here.”

I told him that I was interested in touring a cave.

“Well, I haven’t done THAT in a long while!” he said. “What is your level of expertise?”  Continue reading

Driving the Camel: Installment #9

 

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BeachCombing the Soul

Each day at the beach held a gentle routine. The solitude became less and less threatening as I relaxed into it, walking the beach twice a day, cooking simple meals, feeding the goldfish that swam in a large planter by the deck, sleeping, and writing. The mornings found me waking early as the first rays of sun reflected off the water and shimmered across my upturned face. I arose eagerly and walked the length of the beach, pants rolled to my calves, enjoying the surprisingly warm water at the edge of the tide. I marveled at the plucky seabirds, pipers and oyster catchers running alongside searching for their morning meal in the wet sand. They felt like the perfect companions. I’ve always enjoyed beachcombing, and the treasures underfoot competed with the rumbling surf for my attention. There was so much beauty everywhere that it was hard to know where to look.  Continue reading

Driving the Camel: Installment #8

 

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Homesick

 

Once the conference began, I was surrounded by like-minded professionals, everyone eager to learn and share.  In order to earn my keep, I was slotted to present three times on three topics, the first a workshop on play techniques to use with angry or withdrawn children. The audience was receptive and participants volunteered readily to assist me in demonstrating several activities. They shared what made them angry, hurled wet toilet paper at a paper target, and erupted a play dough volcano with glee.  Continue reading

Driving the Camel: Installment #7

 

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Chapter 6: 17 Time Zones

Three planes and over 24 hours later, the North Island of New Zealand came into view as the plane made its way down through the clouds and circled for a landing. Excitement began to tilt the scales of anxiety as I disembarked and made my way through customs. Robyn, a member of the conference planning committee, had planned to meet me and escort me to the hotel. I scanned the group of people awaiting loved ones. I assumed that Robyn would be holding a placard with my name on it. No such luck. I milled around for about five minutes, before I heard a woman’s voice calling me.

“Dib?” her New Zealand accent changing e’s into i’s. Her cheerful smile and mom-like warmth were exactly what I needed to see,

I hugged her like a long lost friend.

“I can’t believe you came all this way to speak at our little conference!” she exclaimed, brushing her hand through her pageboy light brown hair.

“How could I turn down such a wonderful invitation?” I answered.

Robyn’s generosity along with that of the other conference planners was pleasantly overwhelming. The initial invitation to speak at the conference came from Marianne, the founder of the Hospital Play Association in New Zealand. Via e-mail, without ever having met me, she made an astounding offer. Not only were they going to pay my way to come to New Zealand, but she had heard that I was writing a book. She owned a house at Lang’s Beach on the North Island and asked if I would like to stay on for a month to do some writing. The dream of this house had been a rallying point for me during medical treatment. I would lie on the linear accelerator table receiving daily doses of radiation and picture my toes in the sand and a journal in my lap.

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My hotel room on the upper floor overlooked the city harbor, where fleets of sailing boats graced the waters. A gift basket of New Zealand teas welcomed me as I entered the room. I unpacked and fell happily into the king-sized bed and slept.

Marianne was a wonderful host in Auckland. She supplied me with a list of places to go and things to do. She picked me up at the hotel the morning after my arrival and we toured some volcanoes, along with Robyn’s Hospital Play department at the local hospital.

The volcanoes were lovely and afforded great views, but nerd that I am, I loved seeing the lay of the land in Robyn’s hospital even more.  In New Zealand, hospital play specialists have different training than American child life specialists. For the most part, they have backgrounds in early childhood education, and certification through the Hospital Play Specialist Association. Their departments are funded by both the Department of Health and the Department of Education, and their programs must meet the curricular requirements of early childhood education.  This allows for an approach steeped in a thorough grasp of child development and how children learn.

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I was pleased to see that every one of the hospital playrooms mirrored best practice in early childhood education.  Each playroom recognized the bicultural nature of the country, embracing literacy and cultural objects from both the tangata whenua (people of the land – Māori) and the tangata tiriti (the people there by virtue of the Treaty of Waitangi – non-Māori). A huge handmade sign welcomed visitors in several languages, including  English, Maori, Samoan, Hindi, and French. Beneath it stood a table laden with baskets. Each basket held items from nature, shells, rocks, pinecones,  inviting exploration and touch. Continue reading

Driving the Camel: Installment #6

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Part Two  Outside my Comfort Zone

 

Chapter 5: Right on Time

9 months passed more quickly than I’d expected. Being Auntie Deb, writing, attending treatments and doctor appointments, hosting visits from well wishers, and navigating medical plot twists and side effects filled my days. One plot twist in particular was almost funny if it weren’t so worrisome. Beginning with the second round of chemo, within 24 hours of every infusion, my right breast would turn bright, stoplight red. After a trip to the emergency room and a few days in the hospital with a truckload of antibiotics, the doctors told me I had cellulitis.  From then on, after each chemo round, I would awaken the next day feeling like a warped version of Rudolph the Red-Nosed Reindeer, and start yet another round of antibiotics. And yes, I wrote a song about that too.

To counteract my daily battles, Mark did his best to schedule things at night and on weekends that we could enjoy together, especially nights before surgery and chemo.  We went to many plays, concerts, lectures and baseball games during that time. Toward the end of my radiation treatment, we escaped for a few days to visit his family in Florida and take in spring training, And even though I fell asleep for a portion of many of our outings, the distraction and Mark’s hand in mine were a balm to my heart and healing body.

Then, seemingly out of nowhere, the end of treatment snuck up on me and whacked me on the head, none too playfully. What I thought would be a huge milestone to celebrate turned into a marshy landscape pitted with hidden sinkholes. After gliding through treatment with a positive attitude and no shortage of energy, the very end of treatment rolled over me like a tank. It took extraordinary energy to brave the crappy winter weather and walk each day to and from radiation therapy. We had record low temperatures and snowfall that year. Getting anywhere in the city was a brutal task. I was exhausted, deeply sad, and once more, highly anxious. Continue reading

Driving the Camel: Adventures of a Child Life Specialist

 

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Prologue

 

I have always thought of life as a spiral. We grow whether we want to or not, but not necessarily in a linear fashion. We encounter our unresolved issues again and again, and yet we develop at each turn, so that our challenges never look exactly the same to us as they did before. Sometimes, we might not even recognize them for what they are, our repeated opportunities to be whole, healed despite all of our woundedness.

My cancer diagnosis in 2013 was one such turn. It caught me unaware, and yet it provided me with opportunities to revisit my life and stretch beyond my comfort zone in ways I never could have imagined.  A writing program for cancer patients provided me with the structure to revisit my career as a child life specialist, mining memories for wonderful stories that serve to inspire and connect. These stories of the children and families who molded me into the professional I am, weave together in this book with my past and present encounters with the medical environment, as both patient and healer. They show the tender shoots of joy that can exist in the rich soil of pain and suffering. It is my life story, and the fibers of this narrative are the tales of children and people who have taught me so much over the years. I am ever indebted to their presence in my life.

Getting a book published is no easy accomplishment. One in eight women will be diagnosed with breast cancer at some point in their lives. Inspiring stories of survival and life after cancer have a wide audience in not only diagnosed women, but their friends, family and caregivers. However, the market is saturated with cancer narratives, and even though my spin as a child life specialist makes my  story stand out from the rest. it doesn’t mean the publishing world will bite. Being somewhat impulsive, and wanting my story and the good word about Child Life  to reach as many folks as possible, I have decided to use my blog to start the ball rolling. I will be publishing segments of my book on a weekly basis, except for breaks every once in a while for other topics. It is far from a perfect book. I am no Jodi Picoult or Anne Lamott (two of my favorite authors). But I do have something to say that I hope will touch and inspire some people out there. If you are moved, please share my story with your loved ones.

The names of many characters have been changed to protect their privacy.

 

Part One  Getting Better

Chapter 1: Two for One Sale

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My yellow lab-pit bull mix yanked hard on the leash as she lunged at a squirrel scampering across the Bridle Path. I reeled her back in, admonishing her with an angry “Gracie!” as I fumbled to secure my bluetooth headset. It was hard enough to hook the stupid plastic loop  over my ear without her pulling my arm off.

Mark answered on the first ring.

“I’ve got bilateral breast cancer,” I blurted out. I knew the second the words came out of my mouth that I should have waited to share this information with Mark. Waited at least until I was face to face with him, instead of walking our dog in Central Park and blathering into my cellphone. My life partner was driving to work in midtown traffic, certainly not in a good space to hear such awful news.

“I’ll be right home,” he said.

I’d known it was a possibility of course. A call back from the radiologist for another look and eight core biopsies  had my imagination running down all kinds of twisting paths. But with each turn, I’d say to myself, “It’s probably nothing. No use worrying until I know for sure.” I’d shift my focus to something more positive, try to stay in the present. Some might call that denial, but I like to see it as coping.

I finished my routine 1.6 mile loop around the reservoir and met Mark back at home. We sat in the lobby of our townhouse on the window seat, the sunlight sifting through the thick glass onto our clasped hands. I can’t remember why we did that, why we sat there instead of going upstairs to the privacy of our apartment. Maybe Mark had to return to work right away, or thought he had to. But for the time being, he was there, and I held his hand to anchor myself.

“What does this mean?” he asked. “What stage is it? What happens now?”

Mark’s questions mirrored my own, and I had few if any answers. I knew that I had tumors in both breasts, but I had no idea what stage or how far it had spread. I’d never felt a lump or had any symptoms. My annual mammogram and ultrasound had picked up the tiny images. I did know one thing. I was going to get on the phone right away and get an appointment with the premier cancer hospital that stood not twenty-five blocks from our home.  I had worked there for ten years, at the beginning of my career, and there was no question in my mind that I would get the best care there.

Mark ran his hand repeatedly through the scant hair on the top of his head. “I can’t believe this. I am so sorry. This is not what I expected.”

“Me neither, and I don’t even know what to think. This doesn’t feel real yet. I don’t even feel sick.”

“Well,” he said. “We will take care of this together.”

“Do you really think we will be okay?” I asked.

“You mean as a couple?” He hesitated. “I guess this is either going to bring us closer together, or pull us apart.”

Those might not have been the most romantic or reassuring words, but they were truthful. I’d heard some horror stories about spouses leaving their loved one after a breast cancer diagnosis, and we weren’t even married in the traditional sense of the word. Not your average mid-life couple, we’d been together for twenty-nine years, but had never taken that final leap of faith. As the eldest child of holocaust survivors,  Mark had grown up in the long shadow cast by unspeakable crimes committed against his family during World War II. In his world, marriage and family did not translate into the fairy tale vision of a comforting hearth. His mother had suffered from severe Post Traumatic Stress Disorder for most of Mark’s life, and as her primary caretaker, he had developed a hearty aversion to anything and everything having to do with hospitals, doctors and caretaking. My cancer would surely test our relationship’s rough edges.

“I choose closer, I said.”

We hugged tightly before he left for work, and I went upstairs to begin the process of finding a surgeon. Two days later, we walked into the hospital where I had spent ten years caring for cancer patients. I’d moved on to teach in a graduate program in Child Life, advising and instructing students as they practiced their clinical skills in area hospitals. But 16 years ago, as a child life specialist, I had helped children and families navigate the pitted path of cancer diagnosis, treatment, survival and at times, death. Child life specialists are trained in child development, family systems, bereavement, medical education, play techniques and ethnocultural issues. Armed with a degree in early childhood special education, with a concentration in child life, I worked to ease the suffering of children facing illness and hospitalization. Using play, I helped them understand what was going on with their bodies, acting out diagnoses and procedures on dolls using real and pretend medical equipment. I prepared them for everything from routine blood draws to amputations.

Play is so many things in the hospital: it is the language of children, the way they express what words cannot. It is how they process and make sense of the frightening things they experience in the unfamiliar medical setting. It is their way to keep being kids in the face of suffering way beyond what any child should endure. I used toys to shift their focus during painful procedures. I ran playgroups in a sunny and inviting playroom, where children donned stethoscopes, surgical masks and rubber gloves, becoming doctors caring for cloth doll patients.  I brought them activities  at the bedside when they were too sick or weak to leave their beds. At play, the children could be the masters of their universe and take back some of the control and power usurped by the necessity of medical treatment.

But today it was my turn to be the patient. As I pushed my way through the revolving doors of the very hospital where I had provided solace and healing, it struck me that I was the one in need of these things. Who was going to take care of me, the caretaker?  

Hospital Play in Iceland

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After the 99 degree weather in Japan, travel to Iceland called for wooly socks and a winter hat. During my first day in Reykjavik, I met with Dr. Drífa Björk Guðmundsdóttir, a psychologist who served as her country’s delegate at the first global summit on psychosocial pediatric care in 2014. She hosted me at Landspitali, the National University Hospital of Iceland.

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Our morning together included a tour of the pediatric inpatient unit, physical therapy department, clinic and NICU, and  an hour spent in conversation with some of Dr. Drifa’s colleagues, a physical therapist, hospital play specialist, nurse, nurse manager and social worker from a non-profit agency that serves hospitalized children and their families. We discussed best practice for helping parents support and prepare their children for hospitalization. It was clear to me that these professionals held many of the same values and goals for supporting children that we have in the US.

I enjoyed our conversation tremendously, but I must admit, I treasured my time with Sigurbjörg Guttormsdóttir (thankfully nicknamed Sibba, but pronounced “Sippa”!).  Sibba is one of the two hospital play specialists, and she has worked at the hospital for 25 years. A kindergarten teacher who received training in Sweden and Oregon, she wrote a thesis on play materials to use with children.  Sibba welcomed me to her playroom and proudly shared its history and resources, inviting me to sit down and play almost immediately.

Here is the game of choice, Rush Hour.

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