Duetting: Memoir 48

Duetting: Memoir 48 Robin Botie of Ithaca, New York, photoshops a duet of a dream she recorded with a song written by her daughter who died with leukemia.

My daughter was measured and marked for radiation. In a waiting area down the hall, I chewed at my cuticles as Marika got the first of her full body radiation treatments. She had to be seared and zapped cell by cell in order to live. It made me nauseous. They wheeled her back to the room on a gurney and she napped the rest of the day as I sat, waiting in the dimmed light by her bedside. At dinnertime neither of us could eat. I gently rubbed her feet before driving off to Hope Lodge.        

At Hope Lodge on Tuesdays I got free massages. Thursdays it was free dinners prepared by a group of med students. I took Bernadette, a cancer patient who lived there, out for port on her birthday, and watched another resident cook aromatic African dishes. In the afternoons I explored Swan’s German Market, the Public Market, the Monroe County Library, and Captain Jim’s Seafood, always bringing back some bit of Rochester for Marika. Each day I exhausted myself into oblivion. And then the transplant preparations got stepped up.

“Preparations,” Laurie said over the cell phone, “is really a euphemism here. What it really means is wiping out her blood cells and immune system with chemotherapy and radiation, and then ‘rescuing’ her with the donor’s cells.”
“Laur, what’s the deal with GVHD?”
“Didn’t you read any of the stuff I sent you?”
“I did, but it sounds better coming from you,” I said.
“Well, Graft Versus Host Disease is a fascinating condition. What can happen, just about any time in the first year or two after the transplant, is that the immune cells in the donor marrow can begin to attack the recipient’s tissues and organs. They still think they have to protect against ‘foreign invaders,’ and are totally clueless that THEY are the foreigners.”
“Yeah, they warned us it could get nasty,” I said, wincing.
“It’s her only shot, though. There are no more drugs capable of giving her a cure,” Laurie said. I knew that. I was still stuck on the part about the donor’s cells attacking tissues and organs “any time in the first year or two.”

It was snowing on transplant day, January 26, 2011. All morning long I watched outside the hospital window and checked online for weather-related transportation delays. Finally, midday, a courier delivered the stem cells in a picnic cooler. I collapsed on the end of the bed. Giddy with relief, I even smiled and joked with my ex-husband who had arrived with his wife and a cake. We gathered around to watch the donor’s blood product slowly seep into Marika’s veins via a long tube in which I pictured tiny cells charging forward on teensy running feet with swords pointing ahead. We had a little birthday party, and toasted to Marika’s new life, with Martinelli’s bubbly apple cider. After, in a trance, I washed my hands in the non-patient bathroom down the hall by the elevators, and sang softly, “Happy birthday to you, happy birthday to you. Happy birthday,” I choked, “dear Marika.” My eyes filled. My jaw quivered, “Happy birthday.” It was like whispering a prayer. Only I was downright pleading for my daughter’s recovery, “To you.”

The next morning, I returned early to the hospital from Hope Lodge. Marika sat in bed peering down at her chest, her head angled to accommodate her good eye. She was flushing out and disinfecting her own port as a nurse gave directions. Glancing up at me, Marika smiled. She looked ready to take on the world. Like she could deal with aggressive foreign cells, or doctors who dared to tell her No, or whatever else life might throw at her.
“Mom. I just got accepted into the University of Technology Nursing Program. I’m going to Australia next year.”

Two weeks later, on a Friday afternoon in early February, she was pedaling away on an exercise bike someone had left in her room. In sweat pants and a tee shirt, she almost looked like her old self, the athlete, the soccer player, the powerhouse-Marika who would sneer at my panting as we jogged around the block together.

The car was packed for my trip home for the weekend. I felt torn, as I always did, whenever I left Strong.
“Don’t forget to put your laundry in the new blue laundry bag,” I reminded her.
“O-Kay, mom,” she said, dismissing me.
“And remember to keep yourself hydrated. No caffeine drinks.”
“Mom, okay.” She rolled her eyes.
“And when’re you gonna take these pills that have been sitting here all morning?”
“Mom! Get a life,” she barked. “Go.” Conscious of my nagging, I silently picked up my computer and the old green bag of dirty laundry. I walked out the door. Without a look back.

Late that night I got a call. Marika had been admitted to the Intensive Care Unit with pneumonia, low blood pressure, and respiratory failure. She’d asked for me as it became more and more difficult to breathe, while her doctors and nurses awaited her consent to be sedated and intubated. Somehow, at home, before racing back to the hospital early the next morning, I slept. I know, because I wrote down my dream.

 

 

 

 

Duetting: Memoir 47

Duetting: Memoir 47 Robin Botie of Ithaca, New York, photoshops her daughter who died of leukemia amid a screen of falling blood cells

Sometimes I got my life mixed up with my daughter’s life. Like whenever Marika’s blood was drawn, I felt the pain. And once, in the ICU, I watched the monitor display her racing heartbeat for so long, I had to be taken downstairs to the emergency room as my own heart quickened and surged. Marika was getting the transplant, but I was getting a severe panic attack. As we waited for the transplant, I had to remind myself to relax. To breathe.

Late in the afternoon on December 1, 2010, the Roc Docs entered our room looking defeated. I worried, maybe something had happened to our donor. Doc Phillips was back, heading the team. But he did not look like his jolly old self. He sat down heavily and began with a long sigh.
“You are no longer in remission,” he said to Marika. Remembering how we’d postponed the transplant for her concert, I couldn’t bear to look at her.
“So there’s no transplant?” I heard a small voice say. Was it mine? Or Marika’s?
“Things have changed. We do have some good news out of all of this. We have a silver lining,” he said, recovering some of his cheer. “A silver lining,” he repeated. We waited, shaken. “The presence of leukemic cells makes you ineligible for the donor transplant. But,” he said with a dramatic pause. “But, remember that collection of stem cells we harvested from you last March, after the arsenic treatments?”
“Yeah. And then I got leukemia again three months later,” Marika wailed.
“Well, the new plan is to give you an autologous transplant using those cells, your own harvested cells, in the next day or two. This won’t cure you, since you had leukemic cells shortly after the harvesting, but it can get you back into remission briefly. And then you can have the donor’s-cells transplant.” I hugged myself and wondered how many more months until we were on the way to being cured. Relapse number three, and it wasn’t even summer yet.

The autologous transplant was a quick, uneventful procedure, so at the end of the week I went home to Ithaca. When I returned on Sunday, an electronic piano had been moved into the hospital room. New posters were taped onto the wall opposite the bed. The place had a cozy, lived-in feeling, a look that smacked of exuberant festivities.

“How was your weekend?” I asked, trying not to sound overly nosy.
“Mouth sores,” she said gloomily, reminding me of Eeyore from Winnie the Pooh.
“Oh, I brought you Vitamin Water. Maybe that will help.” I unpacked food items, fresh laundry, and mail. Gift bags and an assortment of drinks from her father and his wife already lined the windowsill. A big shiny balloon sailed above the end of the bed, which meant Rachel had been there. I rarely saw Rachel anymore as she worked weekdays. She must have brought the half-eaten chocolate cake that sat on the bed-tray too. They’d had a big party here all weekend, and I got to come back to Eeyore.
“Can’t talk,” Marika said sullenly.
“That’s not good. Are they giving you lozenges or something?” I asked.
“Can’t swallow,” she said, grabbing the croissant I’d placed on her tray.

In the next few days her cell counts rose to acceptable levels and we went home for the holidays. Our donor, the complete stranger who was going to share his blood, rich with stem cells, so Marika could live, would wait for us. Again. For the end of January. I wrote and rewrote a thank you letter to him that the Roc Docs would deliver. The holidays sped by quickly. I celebrated everything I could. Chanukah, Christmas, Kwanzaa, the Winter Solstice. I made tiramisu. Marika and Greg took me out to Bandwagon, a new Ithaca restaurant and brewery. He bought dinner. She gave me her new CD. I gave them each hundred dollar bills wrapped in new gloves, with Chapsticks and chocolates.

“It’s not finished yet. The CD. There’s another song to be added,” Marika said. She sat across from me wearing a turquoise head wrap, large hoop earrings and eye make-up. She had a party planned for after dinner. Her friends were home from college, and she was cramming what she could into her nights. During the days she came home from Limbo to do laundry and sleep. She’d creep down the stairs every so often, “Mom, ‘s there anything to eat?” I loved that time before the donor transplant. It was peaceful. Quiet. Like the calm before a storm.

Deep, dirty snow mounded up along the roads in Rochester on the morning we arrived back at Strong for a full week of chemotherapy and radiation. I piled Marika’s belongings onto a stray wheelchair in the parking garage. My own things remained in the car to be unpacked later at Hope Lodge, the cancer families’ home away from home. I stashed away her bathrobe, slippers, and toiletries exactly where they were in the last room, and then, just as I pulled up a chair, Marika handed me a three-page typed document. Fumbling for my glasses, I saw it was a list of all the places in Rochester I could visit for free.

“You’re not staying,” she said firmly. “I don’t want you here all the time anymore.” For a few stunned seconds I stood there trying to collect myself.
“But your cancer is my cancer,” I whimpered.
“Mom. Get a life,” she blasted back. For a few more seconds I forgot to breathe.

“Okay, but I’ll be here every morning for the doctors’ rounds,” I said, “and then I’ll leave until dinnertime.” She loved her dinners. “And I’ll be on the treadmill in the family room for an hour after rounds each morning, if you need me—need something.” Despite my bruised feelings, I was gaining momentum. “Otherwise I’ll be at Hedonist Chocolates, Wegmans, The Owl House Café, or Dinosaur Barbecue,” I added, naming her favorite Rochester eateries, “or any of the places on this list.” The plan worked for two days, and then the effects of the radiation kicked in and things started to get scary. On the third day, after the morning rounds, she flashed me her pathetic puppy-face as I got ready to leave.
“Aren’t you gonna stay?” she begged.

 

 

 

Duetting: Memoir 46

Duetting: Memoir 46 Robin Botie of Ithaca, New York, photoshops an image of carrying her daughter who died, piggyback style along Bells Beach in Australia, as she scatters her ashes.

Cradling the bag of Marika’s ashes on Bells Beach, in the southeastern coast of Australia, I dip a hand into the cool graininess and it comes out chalky. The wind throws my first fistful of Marika back at me. It takes a few tosses to get the hang of it. Soon the ashes dance from my hand and curl away with the wind before they dust the water. It’s mesmerizing. It’s like playing. Like when I used to swing Marika around in the pond singing “Ring Around the Rosie” and “What Shall we do With a Drunken Sailor.” I would raise her up and dump her into the water. Ashes, ashes, we all fall down. “Again,” she’d beg, “again.” Now, sprinkling small handfuls, I watch smears of ash clouds gently rock on the water’s surface. Sand drags through my grasping toes as I slog through water that alternately swells and retreats. At each toss, the sweet grains of Marika drift slowly beneath the surface as the ash clouds rock and recede, and rock and recede, and rock and – BAM! Crash. I gasp. Cold. Wave. Almost knocked down. It fizzles away. Fast. But I’m soaked. Catching my breath, I look around. No one is near. If I drown or am swept away, I might never be found.

Half the precious ashes are gone. I hug the shrinking bag close to my pounding heart. Rogue wave. Enough ashes for today. I’m shivering. Still stunned. And wondering how I’m going to do this. How can I throw the last bits of my daughter to the sea and then return home to the other side of the world without her? And what will I do about Puppy? I pull the stuffed animal from the pack and pose it on a rock. Giving Puppy “back” to Marika is part of the mission. I’d planned to cremate Puppy on a beach, but fires are prohibited all over Australia except in protected barbecue pits. I’m squeamish around matches and lighters anyway. Marika was right. I’m a wimp. Scattering ashes is hard enough. But, barbecuing Puppy?

Shortly after Marika’s birth I had bought Puppy. Drawn to her myself, I gave her to the daughter I loved more than myself. Puppy went everywhere with Marika, and may even have gone to Australia and back. Puppy was always my key to communicating with Marika, often my only chance of swaying her to see reason. My words came out differently when channeled through Puppy. Puppy didn’t say, “Don’t you have homework to do?” She said, “Can I do homewawk wiv you?” How can I destroy Puppy? Ragged love-worn Puppy. With her long floppy ears, she often got mistaken for a rabbit. She looks a little haggard now in the sun with her saggy stuffing. Propping her upright on the rock, I remember regularly fishing her out of the hospital bed and posing her so Marika, returning from radiation, would find her on top of the bed, hunched over a tea mug with a napkin and cookie, like Puppy had a secret life of her own. I snap Puppy’s photo. Okay, what a dope, what the heck, it’s just a piece of stuffed polyester. But no, Puppy is not only my connection to Marika. She’s a part of myself I can’t let go of yet.

The trip back across the beach and up the long sets of stairs is lonely. But by the time I reach the heathlands, I feel Marika riding piggyback on my back again. She has fallen asleep now. Her head rests on my shoulder, and I hear tinny music sounds from her iPod ear-buds. Plodding on under the weight of her, I think about my own time for being carried. What did my own mother carry me through? That day in the waves at Jones Beach, when I lost hold of her hand, did she panic? Did she know, for a brief time, how it feels to lose a daughter? Was she plagued with thoughts of what if, what if, what if, like an ongoing heartbeat? It must have been hard this past year for my mom to see me so empty, carrying around only memories of my only daughter. She can’t stand to see me grieving. Maybe that’s why she tells me to get over it.

It boggles my mind to consider all the caring and carrying that every person who ever lived represents. Each one of us was carried, fed, and tended to. In one fashion or another, someone keeps a child from ruin. Then comes growth and change as the young life evolves into its own person. And finally comes separation. Into two strong, independent but deeply related beings. At some point the child begins to carry herself off. And the mother who held tight begins to release. There is a healthy split as mother and child divide into two. This is something one should be able to count on: like the tides, like summer following spring. Like your children outlasting you. You go through the normal processes of life and then—separation. But that was interrupted. Marika died. Separation, when a mother’s tug to hold close is not opposed by the daughter’s push to be free, is like fog. You vaguely sense something moving but cannot grasp exactly what or where it is. I envision all the love I invested in Marika wafted up into some universal cloud, a collective care blanket encircling the earth.

When the first anniversary of Marika’s death approached, my family and friends expected me to be done grieving. It was time to let her go, they said. But I wasn’t ready. I wanted to keep her. I could hold forever the memory of unending power struggles with my beautiful, cranky, uncompromising daughter. Besides, she had already written how to live on: she was going to carry her friend Jake who died. So I would find ways to carry her. With me. For the rest of my time. Until I myself must finally be carried out.

I carry Marika out again the next day. Her ashes. And since it’s a Thursday, there are no public buses coming or going in the little town of Torquay. If you have no car, you can only come to or leave this place on a Monday, Wednesday, or Friday on the public V-Line buses. Eager to start the next part of my journey, I book a spot on a private tour bus coming in from Melbourne in order to get to the other end of the Great Ocean Road. Which is how Marika traveled, hopping on and off a tour bus at a bazillion different stops.

The tour bus takes me to the Great Otway National Forest where giant ferns grow in thick moss, and ancient trees with trunks large enough to live in, climb to the sky. There are endlessly cascading waterfalls. This place is magical. It is dizzying. I smell the earthy magnificence of eons of time. If we were time travelers, Marika and I would be colliding into the same brief moment. She was here only two years ago, standing in the buttresses at the base of a primeval tree, posing for a photo. Which tree? From the elevated boardwalks that wind through the dense rainforest, I look around at the huge stands of mountain ash and myrtle beeches estimated to be two thousand years old. Gazing up and down, I see how infinitesimally minimal our being here is. My love, my grief, all the things that consume me are like one single tiny spore on a fern in a massive gully of ferns that have been reaching out for thousands of years from under immense forests of towering trees. Time is the endless sky beyond the forests. I cannot fathom it.

“The bus,” a fellow passenger points to his watch. Last to board, I fall into my seat as the bus takes off. It stops at a convenience store in the middle of nowhere, for lunch. It stops at a site where wild koalas hug eucalyptus trees, and bright-colored parrots land on my head. We visit lookouts, and learn the legends of the Shipwreck Coast. And towards the end of the day, the bus pulls into the petite town of Port Campbell. It drops me off at the Loch Ard Motor Inn, home base for the third leg of my journey.

Two women laugh heartily in the back room. I wait at the desk, listening a minute before I call to them. One comes out smiling warmly at me. That’s all I need to feel at home. And in my new room, I assemble the little altar on the counter under the hanging TV, and pose Puppy hugging the bag of ashes. The chocolate is gone but I lay out colorful ticket stubs from the bus tour, and the photos. Holding the old photo of Marika on Bells Beach, I touch the bag of ashes.
“Thank you, Mareek. All those gifts I gave you, all the best things, you’ve given back to me now: Suki, the cowboy boots, your love of writing, Puppy, Australia, … so much.”

I’d given her life. And maybe, in some way, she was giving life back to me too.
“Mom, get a life.” Maybe that’s what I’m really doing here in Australia.

Duetting: Memoir 45

Duetting: Memoir 45 Robin Botie of ithaca, New York, photoshops apicture of her daughter who died of cancer on Bells Beach in Australia.

“Why would you want to go THERE?” ask two stewardesses on my flight from Sydney to Melbourne, when I question them about transportation to Geelong, the gateway city for my next destination, the Great Ocean Road.
“To scatter my daughter’s ashes,” I gush out, in tears, overwhelmed by the first bit of interest anyone has shown in me since I got to Australia. I’m also a little terrified, having no plan for getting from the Melbourne airport to Geelong to the tiny town of Torquay where I have booked a room. This is not how I like to do things, not knowing what’s next.

From the airplane to the Melbourne shuttle, two train rides, two buses, and long walks dragging my rolling luggage behind, I am making my way, inch by inch, with direction-seeking and extended waits between each step. It takes all day to get from Sydney to the remote town of Torquay on Australia’s southeast coast. This second part of my journey is filled with questions no one back home could answer. Marika’s friend Carla would only tell me the Great Ocean Road must be discovered for oneself.        

The first I’d ever heard of the Great Ocean Road was in April 2010 when, in the middle of her trip, Marika had phoned. Overjoyed to hear her voice, I was caught off guard. I thought she was homesick. I should have known better. She was calling to ask for extra money. To rent a car for a trip along the Great Ocean Road. It was “what everyone does on holiday from Melbourne.” I told her, No. So she and Carla took a bus.         

Now here I am, two years after Marika’s trip, on a V-Line regional public bus, racing along a two-lane winding road that hugs a corner of Australia’s dramatic southeastern shoreline. The road ties together one hundred fifty miles of remote coastal towns and popular resorts. Prime surfing territory. I can’t take my eyes off the teasing blue sea which one minute seems ahead of me, just beyond a stretch of beach, then disappears and is suddenly smack below as we speed along atop high cliffs. We wind by rocky gorges, rolling foothills, secluded bays, and shipwreck coasts with towering limestone formations. Built as a memorial to the fallen soldiers of World War I by the returning soldiers, and later the jobless of the Great Depression, the Great Ocean Road is one of Australia’s National Heritage Sites. Tour buses from Melbourne regularly run its length, stopping at the most dramatic spots, the stunning seascapes in Marika’s photos.

Finally arriving in Torquay at the east end of the road, in a new motel room I reconstruct the altar of photos, chocolates, and stuffed Puppy, around the box of ashes. Then, wanting to locate the trailhead before dark for the next morning’s mission of ash-scattering on Bells Beach, I question the motel’s friendly bartender. No one else is around at that moment. So he closes up shop and leads me to his car. I hop in. He’s not really a stranger, I tell myself. But I sit poised for escape anyway. He drives a short distance down a deserted road.

“Yer sure ya want to walk all the way from the motel ‘n the morning?” he asks, regarding me like I’m crazy. “It’s a long way.” I don’t want to look at him. What am I doing in this bartender’s car anyway? He keeps driving.

“Nine kilometers, that’s only like six miles. Not much elevation change. Why not?” I say with a rising cloud of doubt. He shakes his head. I must look old to him, this kid running the whole show here. A hotel, motel, gaming room, bar and bistro, all in one, the Torquay Hotel Motel is the liveliest place in this little town. Everyone including this bar-boy seems to be Marika’s age, maybe younger. “I can walk back from here, thanks,” I say once we reach the trailhead. My sense of direction flustered, I ask him, “Which way back to the motel?” just to be sure.

Back at the bar and bistro later, I borrow a knife to open the sealed box of ashes, to let Marika breathe. And to make sure I won’t be stuck way out on the beach the next day, unable to open her box without tools. It is my first time meeting her ashes. With held breath and quivering hands, I pry gently at the box. It opens easily, like she’s pushing the lid from inside. She’s a trillion tiny shards, like cool white sand on a beach at sunset. In a plastic bag. In a bewildering way she’s still beautiful. I stare at her. At what’s left.

“The internet’s crashed,” says the Hotel Motel bartender when I seek him out once more, to get online. “I’m sorry. This never happens. I’ll refund some of your money.”
“No, that’s okay,” I say, thinking I may have killed the Internet connection myself. I’d tried to google “how to scatter ashes” and the little iPad went blank. Connection disappeared. It went the way of my family and friends all during the past year whenever I’d mentioned anything about Marika or ashes. Or death.

I didn’t have much faith I could learn efficient tossing techniques online anyway. I’d simply have to stand with my back to the wind and wing it. Tossing ashes. Flinging ashes. Ashes are typically “scattered” or “spread” if not kept forever in an urn on the mantle until someday some distant young relative has to figure out what to do with them. Marika had requested her remains be “scattered in Australia, if possible,” which gives me a lot of leeway. Spreading means smearing, like what one does with peanut butter or sunblock. So I’m glad she specified scattering. It gives me more a picture of sprinkling small amounts. Either way implies a distribution over a large area or several areas, broadcasting here and there, as opposed to just dumping it all in one place. And Australia is a vast continent, almost as big as the US. Early on I decided to leave ashes in the places I knew from her photos that she’d been happy.

The next morning, I load Marika’s Ithaca Track and Field drawstring backpack with water bottles, a peanut butter and plum sandwich, and chocolate bars I’d hunted and gathered from the local grocery the evening before. I add maps, Marika’s stuffed Puppy curled into her baseball cap, and the ashes. But when I put the pack on, the box of ashes chafes at my back, giving me visions of Crusaders with heavy crosses gouging deep gashes across their backs and shoulders. I take the bag of ashes, maybe six pounds, out of the black box and gently stuff it back into the pack, leaving the box behind. With a full, heavy backpack I step out the door to a blinding sun. Quickly the bag of ashes settles into a rounded rump shape that bumps behind me as I walk a few hesitant test-steps around the parked cars. I imagine I’m carrying a life-sized Marika piggyback style. I can almost feel the swish of her heels swinging by my knees.

“Mom. Let’s go.” She kicks and nudges me in the direction of the trail. And so we’re off to Bells Beach. A long walk with a lot of weight, but all I need to do is keep on the right trail and be wary of the high tide at four-thirty the bartender had told me about.
“Oh, I’ll be done way before then,” I’d responded. Then he’d warned me to watch for the occasional big rogue wave, and I’d stifled a gulp.

Now, tall dark Norfolk pines line the beaches I pass. A long boardwalk over shallow water bounces under me as I tread the moist planks. When I reach solid ground, the landscape changes rapidly. Forest turns into scrub, and then into sandy coastline. Soon the path climbs. It becomes gravelly beneath sky that is dauntingly blue and forever. Under the hot sun, I lumber over rocks and cliffs, along crunchy red-sand footpaths, and through heathlands. Grasses, scattered trees, birds flickering in low woody bushes. Scrubland. The Surf Coast Walk twists and breaks off occasionally for lookouts. I whisper nervously to Marika’s ashes each time the trail splits. When it hangs over the shore, visions of falling from crumbling cliffs crash in my head. And I assure her—her ashes—we’re okay.

There are surfers out in the distance. A dog sits in the teeming shallows waiting for its owner. So much of surfing is waiting. You wait to be in the right place at the right time, wait for the right wave, and then fly with it. Hold on when you’re tossed, keep on top, re-find your footing when it’s lost, and then go the distance. As far as you can. And scramble back up again when you get dumped. And wait some more. It reminds me of living with cancer. Am I a cancer survivor, I wonder? Marika got wiped out by cancer, but I survived. Watching the surfers, I wonder how they don’t get completely mauled in the crashing waters.

Three hours later, I climb down several sets of wooden stairs and stare at Bells Beach, the exact spot in the photo. The photo where Marika stands smiling, holding her arms out like she’s hugging the world. Only it’s an empty landscape before me now. It’s supposed to have her centered in front of the jutting point, arms lifted outward. Glued to the spot, sweating, I wait like I’m expecting to be met by her ghost.

An Asian tourist, bogged down with heavy cameras, passes by after a while and I give him my borrowed, pocket-sized point-and-shoot to take my picture in Marika’s place as I try to duplicate her pose. When the tourist is done and walks off, I am left alone on the beach. A kick at my back tells me Marika wants out of the bag, so I remove it from my pack, open its twist tie and inch closer to the water. Fears of waves and the incoming tide clash with the realization that I need to wade into the water to release the ashes. This is what I came all this way for, I tell myself. I can’t just spill Marika’s ashes onto the sand. So I kick off my sneakers, roll up my pant-legs, and cautiously slip into the seething surf. In knee-deep water the waves barrel into my body, soaking me almost to my waist. I brace myself against the poundings and try to ignore the stirrings in my head, “Don’t go out too far” and “Never swim alone.”

 

 

 

 

 

 

 

 

 

Duetting: Memoir 44

Duetting: Memoir 44 Robin Botie of Ithaca, New York, photoshops a love poem written by her daughter who died of leukemia.

I remembered that I never talked to my own mother about love either.

“It will get better, it’ll be okay,” my mother had told me one day when I was lovesick and couldn’t hide my reddened eyes. The words seemed so lame then. It took decades to finally find the truth and comfort in her simple response, “It’ll be okay.” Eventually I learned love could keep a person going, could stretch a person to her best. It could make anything beautiful, even winter. Love could keep you fighting for your life. Or it could rip your precious reserves to shreds.

At the end of November 2010, three days after Marika’s concert and still high on our victory, we were admitted to Strong for the stem cell transplant preparations. Punching at her cellphone with frantic thumbs, as I trudged under the weight of our bags, Marika trailed me to our room in the Oncology Unit. OUR room. This was the first time the nurses told me I could have the empty bed next to hers. No more trying to sleep in a reclining chair. No late night drives to Hope Lodge. I stowed away the last of our belongings and noticed Marika on her bed, transfixed on the computer. Crying.

“What’s wrong?” I asked, immobilized.
“I haven’t heard from the schools in Australia yet,” she said in a squeaky pinched voice. She had applied to two Australian universities, hoping to enter a nursing program in January 2012. The Roc Docs had warned it would take a whole year to recover after the transplant.
“Mareek, you just applied a few weeks ago,” I said, “It takes time.”
“I didn’t even get to say goodbye,” she said, tears dribbling down her hot pink cheeks. She turned the computer around to show me a handsome young face with smiling blue eyes and long sandy-blond locks. “He’s going home. He has a girlfriend,” she sobbed.

Slowly, moving closer, in a high voice I asked, “Is this the Australian guy you’ve been hanging with the last few months?” She nodded, choking. Her whole body shuddered, and I remembered the pain of longing for lost love. I should have held her. Comforted her. But it was like I was wading into a cold lake. Tentatively. One frozen limb at a time. I kept my eyes focused on the face on the screen.

“He’s adorable,” I said, not knowing what else to say. She composed herself and added,
“He was always good to me. No man ever treated me better.”
“Then you’ll just have to go back to Australia. It’ll happen,” I said, touching the computer. “It’ll be okay.”

That was all she ever told me about the Australian. That was all I had to know. He made her happy. He made her sad. Somehow, it would all be okay.

 

 

Duetting: Memoir 43

Duetting: Memoir 43 Robin Botie of Ithaca, New York photoshops an old picture of her daughter who died of leukemia as she sang her last concert.

“We have a donor for you,” the Roc Docs announced at our meeting, like they were giving Marika a birthday gift. “He is twenty-nine years old.” Age and gender was all the information the transplant team could share about our donor.
“The transplant preparations take two weeks, and the donor is available in mid-November.” Because of her history of extreme reactions to treatments, Marika would have to stay in the hospital during the rigorous preparations. “So you’ll be admitted at the end of next week,” they said. Startled by the short notice, I must have gulped. Suddenly seven sets of eyes turned to me. Then a small voice popped up, not my own.

“I can’t,” Marika said, and the focus honed in on her. “My concert. I have to do my concert.” There was a stunned silence in the small, overstuffed room.
“Your concert? But—um, when is your concert?” one of the team finally asked.
“It’s either the 26th or 27th of November. We’re still working out the details.”
“Uh, we can see if the donor can wait,” one of the team suggested uncertainly. Leftover smiles were frozen on the faces of the doctor, the social workers, and the nurses. They eyed each other in disbelief. Then they looked at me like I should do something. I heard myself swallow. No one said to us, “We’re worried about losing our small window of opportunity” or “We might lose our donor.” If this was a bad idea, it wasn’t being made clear. They simply nodded and said they would ask the donor if he could be available at another time. So everything was put on hold. My stomach was grinding bricks.

“Are you out of your mind?” Bewildered when I told her, Laurie yelled at me over the landline back home. “Remission doesn’t wait around for you to check everything off your to-do list.” She said nothing to Marika, didn’t yell at her. But a day later, she called back to ask me, “So, what’s the new game plan?”
“The concert is on Friday, November 26th. We get admitted on Monday the 29th, and the transplant is on Monday, December 6th. Wanna come out for Thanksgiving?”
“No, but I wouldn’t miss that concert for the world,” she promised.

Thanksgiving in Ithaca is a chaotic coming and going of thousands. Evacuating students, mostly. But also friends and neighbors. The people you count on to participate in putting on a concert, or to show up. All the movement over the course of a few days makes planning an event during this time period an exercise in patience, creativity, and faith. Marika and Russ scrambled about to get a back-up singer and other musicians from people who had not yet heard their music. By the day after Thanksgiving, the night of the concert, The Nines in Collegetown was packed. I knew almost everyone there, and their mothers. Saving a seat for Laurie, I nursed a beer at a table with friends as we ate pizzas and tried to hear ourselves talk over the clamor of The Nines, known for its crowds, Blue Monday jams, and deep-dish pizzas. Our excitement and anticipation were at a peak when simultaneously, the band appeared and Laurie arrived. My eyes immediately zoned into an examination of Marika. Cute dress. When did she get that? She’s wearing the boots I gave her. She looks happy. She looks tired, like she just woke up.

Pleased with the crowd, Marika started singing “Party Jam,” a short song she and Russ wrote. Her large earrings dangled wildly as she moved to the music. In the back, Russ beat away at his drums. I was mesmerized watching my daughter doing what she dreamed about. I ordered another beer.
“Hello everyone. Welcome to the Nines,” Marika said cheerily, and went right into “Soldier,” a song she had written for her brother who was there in the crowd, recently honorably discharged from the army. She grimaced at her back-up singer who, unfamiliar with the tune, sang off key. The singer wore an old ridged washboard tied around her neck, which she struck with two drumsticks. I glanced across the room at her mother who smiled proudly at her healthy, spirited daughter.

“Don’t forget to tip those bartenders,” Marika ordered at the end of the song. “I wanna see more of you dancin’,” she yelled. The crowd cheered. The music got louder, and she danced. Then we all danced. We bumped into each other and laughed, waving our arms. It didn’t matter that we could hardly hear the songs over the percussion. This was what we’d waited for, what our lives had been put on hold for. The crowd at the Nines was crazy. The music boomed and Marika was in command. I wanted to freeze-frame the moment. She sang “Never After” and trailed off, “I am not going anywhere, I am not going anywhere, I am not going anywhere.”

Finally, with a victorious smile, finger pointing and fist punching the air, Marika shouted a song by Cake, “I want a girl with a short skirt and a lo-o-ong jacket.” A raucous finale. Just in case anyone was thinking this concert was to be her swan song. Sometimes I wonder if Marika knew it would be her last performance.

It was ending. Please don’t let it end, don’t let it be over yet, I pleaded in my head, sending a grateful prayer to whatever kind spirit might be watching my world. Cheers to Russ and all the musicians, to all the servers at The Nines, to everyone in the crowd. I shot blessings to the doctors who waited and the donor who waited.

Laurie and I walked back to the car, our Frye boots scuffing the sidewalks of late-night Collegetown. My ears still rang. In the dark streets, the dazzling streetlights were kaleidoscoped by my tears.