Tag Archives: healing

Duetting: Memoir 41

Duetting: Memoir 41 Robin Botie of Ithaca, New York, photoshops her grief journey to Sydney, Australia.

Marika’s Australian scrapbook is filled with names and words. Excited scrawls strewn over the pages: “Suki wishing well” and “Wishing Tree.” “Flying foxes.” “Floating stage.” It becomes a game, a scavenger hunt. Her words are clues that set me loose fishing for what she saw. I canvass my way all over Sydney, and question people in the streets to find what Marika found.

Which of the countless statues of dogs was a wishing well that reminded her of Suki? She wrote “Hot Sake,” so I feast in Asian eateries, imagining her delight at being able to drink legally in Australia. She wrote “seagull and Big Mac.” Could she have seen the same seagulls and egret punching around the MacDonald’s bag that only the long-beaked egret could successfully reach into? “Weddings!” she’d written, and I could feel her joy. Words are no longer just words. They are stories. ‘Weddings!’ is a story. ‘Wishing’ is a story. And the word ‘ashes’ is now my tour guide who tells me, “Mom, you hafta go to the Queen Victoria Building,” and “Go to Darling Harbour.”

I pounce on this city like a young child attacking a pile of presents. At Taronga Zoo I follow koalas, quokkas, and rabbit-eared bandicoots. At the Aquarium, I stand in awe, surrounded up and down and on all sides by fish that swim serenely to classical music. Hanging out near the University of Technology, I find exotic Chinese Gardens and flocks of colorful parrots. I follow my nose through aromatic Asian and Italian neighborhoods, and pick out a live barramundi fish to feast on in Chinatown. I scarf down fish fries on the wharf and stuff myself with mashed pea-and-meat pies at the Harry’s Café de Wheels truck. Hot on Marika’s trail, I eat ice cream and crepes for breakfast at Pancakes on the Rocks.

The streets are lit up when I go to see The Marriage of Figarro at the famous Sydney Opera House. A huge chandelier is suspended over a floating stage on Sydney Harbour for the next evening’s performance of La Traviata. Loud funky music blasts out of shops along Elizabeth Street where everything is young and full of life and light, all day and long into the night. For four full days I ride the buses and walk endlessly in and out of markets, shops, museums and parks. I hop on a ferry and toss Marika’s jewels into the water at Darling Harbour and off the Harbour Bridge. Dropping her bracelets into deep water, it feels like I’m planting her here.

On the evening of my last day in Sydney, I am on a ferry I took out of the harbor in order to get free Internet access. I need to be in touch with my support squad. It is time to leave Sydney, the easy part of my trip, the first part of my four-part journey, where I’ve gotten comfortable and now feel safe. I send out a message to my friends: I’m emailing you from the middle of Sydney Harbour! We just passed the Opera House. Looks like we’re headed for the Pacific now … connection could quit any time … hope this ferry returns to the wharf eventually… more to follow.

I’m kicking myself for assuming the boat would return to the same place. Like home, I don’t expect I can really get back, not like the way it was. And what can one assume in a place where you don’t dare drive because people drive on the left and pass on the right? As it turns out, I can’t even walk properly in Australia. For four days I’d bumped into people and done a do-si-do dance with them in the street trying to figure out who was supposed to move over, and where, to let the other pass. Until some BIG guy coming from the opposite direction grumbled in his adorable Australian accent, “Yer in ‘Stralia now, yer not in America, darlin’. Stay lift!” I got it. Just in time to leave the crowded streets of Sydney, the city that whispers to me, “It’s okay, your story’s no sadder than anybody else’s here.”

And in Sydney Airport once more, headed for Melbourne, I’m coddled as if there’s a sign on my front saying ‘delicate.’ I’m told I don’t have to take my box of ashes out for inspection. I don’t have to remove my shoes. And in a state of disbelief, I completely forget to take out my plastic-ziplock bag of liquids. So forgiving is Sydney. She purrs, “We’ve seen it all before.” And at the airline counter, the agent offers, “Since you’re here two hours early for your flight, we can send you on the earlier flight, no extra charge.”

‘Sydneysiders’ they call themselves proudly. What a warm, sweet beginning to my journey. Doing Sydney first was like starting a meal with dessert.

 

 

 

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Duetting: Memoir 39

Duetting: Memoir 39 Robin Botie of Ithaca, New York, photoshops a poem written by her daughter who died of leukemia onto her photograph of a sea of clouds.

My story bounces around a lot. Back and forth between times. That’s because I, myself, am always straddling time, living with one foot firmly planted in the past and the other limping in the here-and-now. Time is so squirrely. It’s always getting waylaid by something catastrophic or miraculous, or just plain draining.

What am I doing? I ask myself when almost everything I do is for Marika. In the spring of 2012, I’m going to Australia to carry out her last wishes. The trip is an extravagance I would never have allowed myself. But someone was going to have to go someday, unless we would have brazenly mailed her ashes off to that Australian she loved, who never answered my emails, and let him dispose of her ashes, easy and cheap. No. In April 2012, I am still standing guard over her. Her ashes. This is part of our journey together. And for me, a journey is never simply a distance covered in time or space. It’s an opportunity to change something. It can be open-ended, intuitive, or steeped in purpose, but a journey is dependent on attitude more than intentions. Where will I allow myself to go? Can I stay open to whatever comes my way? And if something goes wrong, if “broken tides collide” like Marika wrote, will I be able to smile—one day, if not immediately—and accept that it was simply what happened? Just part of where that journey would intercept another path?

Australia was Marika’s dream for another shot at life, a life without cancer. And when my journey is over I, too, will start a new life. My life without her.

I have to keep reminding myself I will not find Marika in Australia. Not a trace of her. She was there only two weeks. When she left home, I gave her tickets and a Triple-A Travelcard loaded with three hundred dollars. I told her not to spend money on anything for me. I just wanted to know about different foods she would find. And she gave me, on her return, cookies and a postcard with a cheeky four-year-old in a superhero costume on the front. It was a government-issued advertisement for product safety she’d gotten for free.

“Mom,” she had written on the back of the card, “Always Marika, Top 5 foods from Australia to try: 1. Vegimite!! – Very salty 2. TimTams – Especially dark 3. Rosy Apple Bits – ask me for some 4. Australian style bacon – probably can’t find in US 5. Lamington slice – I couldn’t find. I need to try too!” Right there was an unfinished mission, I noted.

Then there’s her scrapbook with clippings, postcards, and brochures. And photos. Photos Laurie and I googled to match the backgrounds with images of particular places. So I could have an idea of where Marika’s feet had taken her, “which way my feet are going,” like Marika said.

She had flown to Australia alone to meet up with her lifelong friend from Ithaca, Carla, who was at school in Sydney for the year. Marika had other friends there as well. I will have no one. She’d asked for extra money to rent a car and I’d said no. So I will not allow myself to have a car there either. I will not open the box to spread her ashes until after Sydney, after one last flight five days later to Melbourne. I’ll take four full days in Sydney to calm my apprehensions, fuel my courage. I’d planned as much as I could before the trip so I wouldn’t end up immobilized by fear in hotel rooms for the whole two week trip. Yes, I’m terrified. That is why, on my last night home, I emailed twenty-two women, my Australia-Alone Support Squad:    

If you’re getting this email it is because I regard you as someone who has been strong and supportive, and I need your help now. I am on my way to Australia with Marika’s ashes. But I am not alone. I have her stuffed Puppy, my iPad, and you. It is scary but I can do this …

To Marika I wrote, in response to her poem: Marika, I am not “Flying to You.” There will be no one and nothing to greet me. I will arrive alone, tired and hungry, and scared because I will have to fend for myself as soon as the plane lands. I will not be rewarded with your smile or anyone’s open arms. Oh, to be flying to someone I love. And now, over this past year of grieving, I have found all your words, all over the house. There won’t be any more poems left to find when I get home. But while I was packing, I came across a framed drawing of a rabbit you’d made that said “Welcome Home Mom.” I put it on the mantle outside my bedroom, to be the first thing that greets me when I return from Australia.

Let the royal rumpus begin, I always say upon starting an adventure. Buckle up. We’re gonna bounce around a lot.

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Duetting: Memoir 36

Duetting: Memoir 36 Robin Botie of Ithaca, New York, photoshops a maze over an old photograph of her daughter, a cancert patient, to illustrate that there was nothing simple or atraightforward after cancer struck home.

Nothing was simple or straightforward ever again after cancer hit home.

“Let’s toast to summer,” said my friends, as we clinked glasses at our first outdoor dinner of 2010. I pictured berry picking, pond swims, barbecues, and all the feasts we would cook up the next three months. In between Marika’s weekly blood draws and my search for a new teaching job, I would allow myself some time off. Marika had secured her job as boating counselor and lifeguard at the Stewart Park Day Camp. She had her apartment and her car. We both had new bathing suits. Finally, after missing the last two summers, our Best Summer Ever was about to begin. But in our lives nothing could be presumed anymore. There was no straightforward movement towards any end. I should have known better than to celebrate.        

Marika’s friend Rachel, hanging out at Limbo before leaving for summer school at Long Island’s Hofstra University, was also anticipating summer. “I just have Anatomy-Physiology to finish up and then I’m done,” she told Marika, chewing a mouthful of Australian cookies.
“Did you just eat the whole box of TimTams?” Marika chided her. With chocolate crumbs dotting her face, Rachel shook her head, licked her lips and grinned, “You should visit me on Long Island this summer.” But Marika was preoccupied inspecting the countless unaccounted-for bruises on her arms and legs. She knew what that meant.

“What is it about cancer and summer?” I asked Laurie, that night, over the landline. “It’s exactly a year after her first relapse, and that was a year after her first diagnosis. Why always summertime?” We quickly resumed our old routine where I relayed to Laurie the medical terms doctors threw at us, so she could breathe meaning into them.
“It’s the same type of leukemia,” she said.
“Laur, they told us they ran out of drugs to treat her with,” I wailed.
“Well, there’s one mega-problem with the second relapse: there are no standard forms of treatment.” I squeezed the phone as Laurie continued. “The only option is to find an experimental drug in Phase Two of its clinical trial, meaning they are ready to try the drug on significant numbers of people—I guess the mice must have lived.”

“So what’s the good news, Laur?” I asked hoping to eliminate the scenes of squirming cancerous lab mice stuck in my mind.
“She might get to keep her hair?” Laurie said, questioning herself. “You get to travel,” she added, more sure of this possibility. The Roc Docs had been consulting with colleagues in Chicago about a drug being used in Japan. They wanted to send us to Chicago, but Laurie went online and discovered clinical trials for the same drug being conducted on Long Island. In order to get a new drug, we would have to show up regularly at a cancer center. We couldn’t simply have a new box of pills mailed to us and just continue with our lives. So we were on the phone making plans to go to North Shore Medical Center in Manhasset, one town over from where I grew up.

“I hate Long Island!” Marika stated. Emphatically. I shushed her, and hunched over the phone.
“Can you come down the day after tomorrow?” Pat Li, our contact nurse at North Shore, asked. The quick responses from the clinical trial people surprised me. Did they sense our desperation to do something—anything—to be rid of cancer? Or did they need us, need more human guinea pigs? We packed half-heartedly as Marika had not yet been accepted into the program. We wouldn’t find out if she qualified until our first appointment. If she did, we would remain on Long Island for three weeks. If not, we would turn around and go home. There were too many questions either way. Like where would we stay if she qualified? And what would we do if she did not? Whether or not her father’s health insurance would cover it, I didn’t dare consider yet.
“Wifey, it’s only seven minutes from my school,” Rachel said joyfully to Marika, “You’re definitely visiting. We’ll have a blast.” Oblivious to Marika’s sentiments about Long Island, Rachel was already making plans.

“I’m not going,” Marika said on the morning of the first appointment for the clinical trials. She had slept at the house to make for an easier early morning departure. It was time to go, and I was anxious about dealing with New York City rush hour traffic, finding the medical center, and maybe being told she didn’t qualify for the trial. “I’m not going,” she said again, banging the refrigerator shut. We had at least a five-hour drive ahead of us and she was already being difficult.
“Mareek, this is our best bet to get you into remission. Our only bet.” I was sweating, and my head was beginning to hurt. “What on earth is the problem?” I was losing it. My voice got higher. Louder. “I’ll meet you in the car in ten minutes,” I said, praying things would not explode into an outright war, or worse, in her disappearing on me. I’d made breakfast and delivered the tray to her room. I’d walked her dog and driven it to family friends who would take care of it. I made Marika’s special tea with lemon and honey in a thermos for the road. So she was supposed to cooperate now.

“I. Don’t. Want. To go.”
“Okay, what do you need to have happen so that we can get moving? Because I’m getting nervous. This is not my idea of fun. Who wants to be driving to Long Island? Of all places! I thought I was done with Long Island years ago.” I was ranting uncontrollably, “And they might just send us home with nothing. And then what? You would miss our last chance for a cure because you don’t like Long Island?”
“I don’t want to talk,” she said, her tone matching mine. “I’ll go, but don’t talk to me. If I hear your voice I’ll jump out of the car.”
I opened my mouth, then caught myself and nodded instead. But she had already thrown herself into the back of the car with earphones plugging her ears, her thermos of Get Gorgeous Tea and a thick invisible wall between us. We drove in silence and got caught in morning rush hour traffic, as I knew we would.

As far back as my mind can remember there was anger every place I called home. I was attracted to it and it followed me everywhere: my childhood ranch house on Long Island, the palace on Ithaca’s West Hill, the homes by the ponds. Anger lurked in the walls and ceilings, in the carpets and closets, in every corner. It seethed in the spaces between the inhabitants. It was inherited; it was contagious. It could boil for months, sometimes seeping through the cracks before erupting completely, violently. My own small blaze was mostly suffocated in passive-aggressive smoldering. I got away with that for most of my life. And when I should have been most angry, my little fire turned to ashes. It disappeared somewhere in the sad miles and years of shuffling my young children back and forth between two simmering households. I watched the anger grow in my kids. My son eventually found it useful for survival in combat. In Marika, it came out in fierce tantrums. By the time cancer crept into our lives, my own anger had mostly dissipated in the raging storms around me. Seeing it in the eyes of the ones I loved, chilled my heart.

“Let me know if you want me to stop at this rest area,” I said, breaking four hours of silence. “I think it’s our last opportunity.”
“Don’t talk to me!” She kicked the back of my seat. For the first time I wondered, if we were to go home that day, if she might possibly be able to ride back with her father and his wife. They were already in the waiting hall of the medical building on Long Island.

Finally, we were stuffed into a small office at the medical center. More chairs were crammed in to accommodate Marika’s father and his wife. And Rachel. We had not planned on including Rachel in this meeting but everyone was grateful to have her there. With her EMT training, she was savvy about medical proceedings, and the one thing we could count on was Rachel’s ability to calm Marika. Besides, somehow she always showed up, whether or not she was invited.

Pat Li and the new doctor introduced tamibarotene, our new drug. The TammyBear-o-Teen pills were parceled out like expensive French truffles. They were to be taken mindfully, at particular times twice a day. Each dose was to be checked off and recorded in three places on various forms. The drug was ten times more potent than the ATRA Marika had taken the first two summers, the ATRA that had given her seizures and landed her in the ICU with respiratory failure. The good news was there would be fewer and less severe side effects with TammyBear-o-Teen. And Marika would not lose her hair.

“It is not a cure,” they reminded us. “A transplant is the only cure, and for that she must be in remission. This drug will get her into remission, and then she can have a stem cell transplant. As soon as possible.” I finally understood the whole plan. We could all see where we were headed. It seemed straightforward. Simple.

 

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Duetting: Memoir 6

Duetting: Memoir 6 Robin Botie 0f Ithaca, New York, photoshops a bereaved mother searching through her deceased daughter's facebook page as if it is a window to another world.One night in Massachusetts, my sister Laurie and I watch the stars. Then she takes me to Marika’s Facebook page. There we find love letters, poems, stunned friends from all over pouring their hearts out to Marika through the internet. One friend touches another through words that ripple outward, beckoning to an aunt and a mother huddled over a laptop like it’s a window to another world. Invisible webs stretch among us all. So this is what Facebook is, I think. I cast her name out into cyberspace: Marika Joy Warden, who are you and where have you been? Words radiate from my fingertips tapping on plastic. My plea rains over all the planet before waves of warmth come back to me.

On the screen, I see familiar names and photos of children I once knew, now grown. For many of them, Marika’s was their first death. For many more, it was the first death of someone their own age. A few had phoned me on her birthday and on Mothers’ Day. They are traveling or still at college. In all corners of the world, they are getting on with their lives.

I am not getting on. I want my daughter back. I will try anything to keep her close. Wear her clothes. Sleep with her stuffed Puppy, and build a nest in my bed for her real dog, Suki. Marika loved sushi, so I take Rachel out for sushi dinners. Over and over, I play the few songs Marika had recorded. Yearning to know what it’s like to sing before a crowd, and how she could keep practicing a song “until it’s right,” I sing. One song. Musician/songwriter Susan Ceili Murphy put the first poem I found of Marika’s, “Atop a Mountain,” to music. I practice until I can get through it without bawling. Then I take it to France with me and sing it under vaulted ceilings in castles and cathedrals, wherever I find an echo. I sing it over hilltops, off the top of my hotel in Nice, in a boat on the Seine. I sing it to twelve goats in a barn in the Loire Valley, as the biggest goat cocks her head and squints skeptically at me. And back in Ithaca, walking Marika’s dog at night in the driveway, I sing the song to the stars. Finally, I sing it at the memorial in the middle of June.

No one in Ithaca, other than my babies, has ever heard me sing. Setting up for the memorial at the Stewart Park Pavilion on Cayuga Lake, I test the mic with the first lines of the song. There is a sudden hush and I realize I’ve grabbed people’s attention.
“You sound just like Marika,” someone says. Pleased about this, I step before the crowd shortly after, take a deep breath, and begin “Atop a Mountain.” It will take many more months to recognize that my singing would not be the way to hold onto my daughter. But at the memorial, I follow Marika’s voice through the song, without a crack until the last note. My heart pounds as I find my seat, and scoop my inherited dog up into my lap.

Her dog. People had wanted to see Suki. So I brought her, but I’m wondering if this was a mistake. She squirms uncharacteristically. Seeing and smelling so many of Marika’s friends, Suki’s searching frantically for her shining girl. Even though I had quickly become her new girl and she’d become my shadow, waiting for me in her nest by the front door whenever I’d leave the house. Having lost one of her girls, she does what she can to keep on top of the other. My song over, I bury my tears in Suki’s fur. She whines, and looks mournfully at the friends as Rachel begins “Changed for Good,” a song from the show, Wicked. Marika had once silenced a crowd at camp with that song. And now, out of Rachel’s mouth comes perfection. Even when she starts sobbing into the mic, and then apologizes. No one blinks when Rachel sings. And then Cassie sings. And Julie sings. Songs for Marika from those of us who rarely open our mouths in public. I imagine Marika watching us from above, dumbstruck.

 

 

 

 

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Duetting: Memoir 5

Duetting: Memoir 5 Robin Botie of Ithaca, New York, photoshops an illustration for her memoir about the journey with her daughter through the wilds of cancer.Days after the calling hours, I enlist Rachel’s help to go through Marika’s belongings. Rachel wants me to meet her boyfriend. So the next week, still in a daze, I take the two of them out to dinner. Dressed up, made up, and manicured with acrylic French tips, Rachel glows, reminding me of Marika. For a moment I feel like the mother of a daughter again.

“May I see your wine list, please?” I ask the server, intending to order a bottle of wine for the table, the way I do when I go out with my girlfriends or family.
“I’ll have a Long Island Iced Tea,” Rachel says. I try to remember if that’s the drink with five different liquors. Tequila, I think. Vodka. Rum and gin and…. I’m surprised. But she’s of age, so I forget about it. Until she orders a third Iced Tea before our meal of steaks, fries, and giant chocolate chip cookie topped with ice cream is over. Does she always drink like this, I wonder? Did Marika drink like this? At that point, though, I get distracted by car talk. I sell Marika’s car to Rachel’s boyfriend.

Days later, I don’t empty the car or look to see what’s inside. The creaking sound of its door and smell of the strawberry-kiwi air freshener over the dash could release a torrent of memories. Car gone. That’s when I really know for sure Marika isn’t coming back. I spend the next three months running away as fast and as far as I can. I would have run out of my skin if I could have.

In the spring of 2011, England’s Prince William marries Kate Middleton, the Federal Government threatens to shut down, Osama bin Laden is killed, and New York legalizes same sex marriage. But I’m oblivious, racing to catch planes and scanning the crowds of fellow travelers for Marika’s face. It doesn’t matter what’s going on in the world or where I land. Finland. France. Anywhere but home. She is no longer there. The presence I felt so strongly the first days after her death dissipated shortly after I brought home her life-sized portrait and began talking to it. Maybe when I return to the house again she’ll be back. Maybe if I set her free, set her belongings free, she will come back to me. So I’m on a mission to toss Marika’s earrings and bracelets into oceans all over the earth. Does this have to make sense? Will anything make sense ever again?

Then suddenly it’s June and I’m back in the States. I wake up in my car one day, lost somewhere between my mother’s home in Western Massachusetts and my sister Laurie’s in the east. And I’m desperate to find a post office so I can mail more of Marika’s jewels to places she’d have visited. She wanted to see Greece and Ireland. She’d have loved Colorado. So I send out bits and pieces of her to friends all over the world. It offers me some vague comfort, like she is still here, like some part of her is just off traveling someplace beyond my reach.

 

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That Word: Dead

Not DeadNow. When the landscape is greening up and wildflowers are in bloom, and forsythia and redbud trees spray the streets with vibrant color. When everything is bursting alive, blooming, and blossoming. This is the time to discuss the problem many of us face concerning the use of that four-letter word we all avoid: DEAD.

Dead, as in, my daughter is dead. My father is dead. Dead Children.
As opposed to saying, She is no longer with us, or, He is on the other side. Or, They earned their angel wings. She’s transitioned. Deceased. Extinct. Expired. He kicked the bucket, went to his eternal home. She passed away. He is departed. They are gone.

In his poem Away, James Whitcomb Riley (1849-1916) wrote,
     I cannot say and I will not say
     That he is dead. He is just away!

It seems it’s just too painful to use the word ‘dead’ when speaking about a deceased loved one. People cringe. They say it feels too final, too harsh. Cold. It’s upsetting and uncomfortable. All this distress over the little word ‘dead.’ I didn’t even say ‘corpse’ or ‘cadaver.’

My daughter is not “just away!” Don’t try to tell me she is gone; she regularly pops up in my dreams and I talk to her every day. And my father, dead eight years now, still makes me quiver whenever I spend more than fifty dollars.

It is no crime to be dead. It is no affront to polite conversation to mention that word. If I say ‘dead daughter’ or ‘dead father’ I don’t mean to torture anyone. But because of people’s unease, I recently changed the title of my manuscript (still not ready for querying) from Duets With My Dead Daughter to Duetting. With my Daughter. Who Died.

It’s easier on our delicate psyches to say, or hear, my daughter died. That doesn’t feel like I’m defining her. It simply states something she did. She did a lot of things. She drove me crazy, she lived like she had only an hour left, she changed my life. She died. No one in the world loves my daughter more than I do, but the reality is: Marika is dead. So I’m gonna learn to love that word even if it kills me.

What words do you use to say your loved one is dead? What do you think of my new title?

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