Summer 2009 was gone. A second whole summer pirated away by mobs of mutinous white blood cells wreaking havoc with my daughter’s body. Marika had gone under sedation in an altered mental state—as my adoring three-year-old—and at the end of August came out of it, dazed but driven. Fifty-seven days in the hospital. In oblivion, mostly.
“Mom. You’re staring.” “Sorry. It’s just good to see your eyes open again,” I said, not daring to ask how it felt to wake up near September when she’d lost consciousness in July. Or how it was to discover her friends engrossed in new movies, new music, and new relationships. To have gone to sleep skinny, and then wake up swollen. To find a fresh growth of hair instead of her balding head. To climb to her bedroom after being gone and find things moved, to find a huge pile of mail on the bed that hadn’t been slept in except by her cat that no longer seemed to recognize her. The Rip Van Winkle and Sleeping Beauty stories don’t take into account what it feels like to wake up and find a chunk of your life gone. And I never asked Marika. But much later, I would find her journals and the poem above, Wake Up, and stand in awe of her strength and resolve to pick herself up and build a new life. And when I felt my own losses were too much to bear, I remembered her indestructible hope, and kicked myself to reset my course and carry on.
Marika’s Journal, September, 2009:
I sometimes wonder if it was all a dream. I don’t feel as sick as most people think, but the doctors still advise me to “take it easy” and “lay low,” which makes living normally and finding a job or an apartment even harder. It feels like it was all a dream until I look at my pillbox. Twice a day (usually), I extract a dose of chemicals—poisons—to heal my would-be dying body.
My health has improved, so it’s hard to even believe that I almost died three times, or that a few months ago, my once athletic body required two nurses in order to walk. I’ve had to relearn how to walk many times now. After being sedated for weeks on end, your body forgets, and your muscles shrink. What you’re left with is a bed-ridden, weak, catheter bearing, poor excuse for a human soul, who has a long road of walkers, falls, and chipped teeth ahead of it.
I’m much better now, but I’m not “out of the woods” yet. I may be moving into an apartment with a puppy and starting over where I left my life. It’ll be different now.
A good lifeguard is a dry lifeguard. Meaning: a good lifeguard is diligent in predicting and preventing trouble. I remembered this from my training days at Camp Scatico. Waking up on a Sunday, I had my cry, did my morning hike, loaded up the car for the week and took off for Strong Memorial. By the time I parked, I had morphed back into my Strong mode. Starting the week off on the right foot, I climbed the eight flights to the ICU, and was on guard again. Ready to meet trouble. I would handle anything Strong sent my way that week.
The Red Cross books on life-guarding and first aid list the first step when you arrive at the scene of an accident: “Survey the scene for danger.” I always got that. My skills in diving underwater and hauling frantic victims to shore were questionable but surveying for danger came instinctively. Always wary of what might lie behind a closed door, in a bag left on the road, at the bottom of a kitchen sink filled with murky water, or in an old takeout container abandoned in the fridge, I exercise caution. So on that Sunday afternoon, arriving back at the hospital, I knew immediately something was wrong.
First clue: Marika’s father and his wife were still there. They wore twin frowns. Marika had been taken off the ventilator earlier that morning, recovering after two unconscious weeks, and now the monitors sat silent and still. I quickly pushed through to her bedside. “Hi Mom,” she said in a voice higher than I expected. She smiled joyfully at me. “Hi. Are you okay, Mareek?” I asked, my own voice rising in pitch to meet hers. “Puppy.” She said, holding up her stuffed animal. I looked back and forth from Marika to Puppy to Marika again, to size up the scene: my Marika smiling at me, waving Puppy. Smiling. At me. “Hi Puppy, it’s good to see you again.” I shook Puppy’s threadbare paw. Marika eyed me expectantly as I continued making a mental snapshot of things. Skirting familiar territory, in my special education teacher voice I asked, “Umm, can you count to ten, Mareek?” The situation was strange only because it was my own daughter I was assessing. Off on the side, her father was holding his head.
“Okay,” Marika said eagerly. “Okay. One, two. Three. Mom, Puppy.” She shoved Puppy at me like when she was three years old and wanted me to make Puppy dance. Baby Marika. Yow. What was happening? My little girl was back. And she liked to say “okay.” And now she wanted to sing. So we sang.
Surprisingly, Marika could remember many of the words to past camp songs and from beloved Broadway musicals. She now had me working hard to remember the words to Joni Mitchell’s “Circle Game.” “An’ go around an’ round an’ round an’ round,” she was stuck like a broken record until I finally changed the tune. “Oh the sun will come out,” I began an old favorite song by Charles Strouse and Martin Charnin from the musical, Annie, and she joined in. “Tomorrow. Betcha bottom dollar there’s no sorrow, come what may.” I held Puppy up and she watched, totally engaged. “Just thinkin’ about, tomorrow…” “Keep her singing. It’s improving her breathing,” said Robert, the nurse who was adjusting the monitors next to us. “Lah la la-la … hang on ‘til tomorrow,” we sang. “Keep it up,” Robert encouraged, “It’s definitely helping.” Marika and I continued, both struggling to remember the words. “La la-la-la something—something—sorrow,” we sputtered and came to a stop. And suddenly a deep baritone voice resounded around us, “When I’m stuck with a daaaaay that’s gray and lonely, I just stick out my chin and grin and saaaaay—Oh—,” Robert sang with gusto, with hand gestures. We picked up our cue. “The sun’ll come out tomorrow, so ya gotta hang on ‘til tomorrow,” the three of us sang loudly. “Tomorrow, tomorrow, I love ya, tomorrow! You’re only a day a-way!”
“Bravo!” I cheered, and turned to Robert. “You’re brilliant. You know all the words.” “You wanna know how many school musicals I sang in?” Robert said. “I know all the words to everything. But I think we have to stop singing now. It seems to have increased her heart rate.”
I assumed Marika was just dopey from the lingering sedation, and that she’d come around shortly. But by Tuesday the Roc Docs were conducting tests to determine the cause of her change in mental status. Laurie was on the phone, upset because the doctors wouldn’t return her calls. “I’m not used to being an obnoxious, interfering relative, but if that’s what I have to be, I’ll do it. I’ve had a few patients die in the past twenty-nine years, and I can’t help but wonder whether the outcome would have been different had I spoken up and made the specialists listen to me,” she said. “I don’t ever want to feel that way about Marika.”
I’d forgotten one small detail in reporting back to Laurie. The doctors wouldn’t speak to her because Marika had arrived at the hospital this time with her friend instead of me, so the forms listing who should be privy to her medical information didn’t have Laurie’s name added. And now there was intense bleeding, nosebleeds so severe they made Marika’s blood pressure drop dangerously low. The doctors put us on alert. The Red Cross called Greg back from Afghanistan to be with his sister. Diagnoses and hypotheses showered down around us. But I was looking right into the eyes of my baby Marika who could barely see me, but was happy to have me there. And that night, after her father and his wife left, Marika’s breathing rate increased. Her oxygen level dropped and her heart rate shot off the charts. Afraid she wouldn’t be able to sustain the effort she was putting out just to breathe, the Roc Docs shoved the tube back down her throat and put her on the ventilator again.
I rubbed her feet and lay low under the tent I imagined around us, sheltering us from the storm that dropped down in a tumult of medical terms. “Encephalopathy.” “Aspiration pneumonia.” “Chemical pneumonitis.” “Necrosis of the red blood cells.” And “leukemia cells in the spinal fluid.” They drifted beyond our small world where I alternately rubbed her feet and snuck around the tubes and trappings to come closer, to sing into her ear in a high choked whisper, “The sun’ll come out tomorrow, so ya gotta hang on ‘til tomorrow….”
There’s something I should have mentioned long ago: I have no religion. I mean, I don’t know if I believe in God, or in scriptures, or heaven, or in any of the various teams directing members about how to worship or who to trust. Religion, like politics, is one more thing that divides people. I don’t subscribe to any sides even though it means I’m often treading on shaky ground.
I like to imagine there’s some invisible thing out there, some entity that’s always creating, giving and taking. Watching over us all. I feel closest to this thing when I’m by an ocean or hiking in the mountains. Regularly, looking up at the stars or out across valleys into the hills, I send out grateful thanks to it. When I feel lost, this something reminds me I’m not alone. It counsels me to treat others the way I’d want to be treated, and it assures me I will never understand the ways the world works. Occasionally I beg for help or protection. And then it fades as it bids me to do my best and be strong.
In times of crisis or loss, I’ve always envied those who have faith in someone or something beyond this world. Life would be so much easier if I was chummy with God or had some indisputable doctrine to live by.
Back on the last day of June 2009, Marika’s burgundy snowflakes were all over her again. Her job as lifeguard and boating counselor at Stewart Park Day Camp was to begin the next day. It was supposed to be the summer to make up for the loss of the previous summer.
“I’m fine,” she said, dully, when I caught up with her at Strong Memorial. She’d already been put on intravenous arsenic, the standard second line treatment for her type of leukemia. “I’m bored,” she said, meaning she felt trapped and knew her summer plans were now shot. I rubbed her feet and made mental notes of what I would fetch from Wegmans.
“Have you heard anything from Jake lately?” I asked, suddenly needing to know more about the other almost-adult child with leukemia. Whenever we had a setback I’d check the status of the other players, as if we were in some sort of race to beat cancer. “He hasn’t returned my messages,” she said, and turned away. We settled into our old established patterns for hospital confinement. But “fine” and “bored” didn’t last long.
“She didn’t eat the Cheesecake Factory takeout,” I whined to Laurie. “Robin, she’s depressed and in pain. You don’t eat when everything between your hair and your toenails hurts.” “And now they stopped her chemo. What does that mean? Are they giving up?” “That’s just temporary, until they make sure she doesn’t have an infection or pneumonia again,” she assured me. But two days later, Marika was short of breath, and the Roc Docs put her in the ICU to avoid respiratory failure, her signature crash landing. Then she did crash and was put on the ventilator once more. And as she lay there unconscious, the cascade of complications compounded. Low blood pressure. Liver malfunction. Kidney failure. Her heart developed an electrical abnormality leaving her vulnerable to lethal arrhythmias. Inefficient heart patterns. My own heart smashed into my stomach. I flailed about wildly to grasp something stable, anything that might hold me or help me find solid ground. I rubbed Marika’s feet fiercely.
A portable dialysis machine was wheeled in. It looked like a cross between an ancient refrigerator and a big old-fashioned tape recorder standing on its side. I stared at it skeptically. It hummed and churned. A wheel spun around as Marika’s blood went in and came back out. I watched the colors of the input and output to discern any differences, and asked questions of the technicians who monitored the process constantly. There was no one else to talk to. I was miserable. During dialysis, for some reason I was not permitted to rub Marika’s feet. Desperate for connection, by the end of the second week in the ICU, I left my Sleeping Beauty for a weekend at home when her father came to take over. Then, in Ithaca, I couldn’t face anyone. People said, “How’s your daughter doing? I’m praying for her,” and I didn’t know how to answer. If they were kind or tried to hug me, I broke down crying.
A cousin called to tell me a group of nuns in New Jersey were praying for Marika. Another cousin brought Marika’s name up in a service at his temple in Tucson. “We’ll keep her in our prayers,” various friends promised. I thanked them, “We need all the help we can get.” Visions flooded my head: Julie Andrews in TheSound of Music, cloistered away in an abbey of somber nuns, singing and praying in heavenly harmony. Prayers, churches, synagogues, mosques, and monasteries were all foreign to me. But if more people were uttering Marika’s name, and wishing us well, it couldn’t hurt.
Still, for me, then, the only sure solid thing in this world was my daughter. I rubbed her feet and wondered, would those nuns really pray for a girl whose mother practiced no religion?
When your life gets completely obliterated you can chuck it or you can go on, wailing and whimpering as you plant one foot forward in front of the other. I don’t know which is harder. In the thick of loss it’s not like you can recognize any options.
In March 2012, on the first anniversary of my daughter’s death, people are sending me mixed messages: it’s time to get on with your life; give yourself time to heal; get over it; this will be with you forever. It embarrasses me that I’m not employed yet. I had allowed myself the year off. But now my mother’s hints about getting a job have turned into sharp jabs that leave me gnawing at my cuticles. There are no jobs in Ithaca, not for me anyway. I don’t even know who I am anymore or what I can do. Marika’s been gone a whole year, and all I want is to stay home and write at my table in the corner of the house, overlooking the pond where the geese are back trying to nest again.
They’re early this year. Every year the same two geese sit in the same place and build the same measly little nest. Some years they even get to hatch their eggs before a raccoon or woodchuck claims them. Marika and I often watched a bevy of baby geese paddling in the pond between their parents, or waddling on the bank. One always toddled way behind or in the wrong direction. We woke many mornings to squawking and splashing as the parents tried to ward off other overtaking geese. And inevitably, every day, there’d be one less egg or one more baby goose gone, and then another gone, and another, until there were no baby geese left. Then the father would fly off and the mother would wander back and forth along the pond bank, picking at the pitiful remains of the nest. And I can tell you for sure that geese cry; it’s one of the saddest songs I’ve ever heard. A sound, something like sobbing, sighing, heaving, and honking—all at once— fills the sky begging, “Why on earth?” and “What’s next?” and “How?”
“Did you hear from Pat?” I call Rachel. Pat was Marika’s Australian boyfriend. Rachel has his address, email, and phone number from the shoebox where she’d found the final wishes and a sealed letter to be sent to him upon Marika’s death. “He said he’s expecting to hear from you.” “Do I have the right address?” I’d emailed Pat twice already and not gotten a response. None of the Australian connections have replied. This is not turning out to be the trip I’d imagined. I wanted to meet up with people. I’d hoped to make it a family pilgrimage with my mother and Laurie, but my mother couldn’t go. And now, because of Laurie’s recent knee replacement, we need to rent a car to get around, forcing me to alter the trip again. Laurie calls at the last minute.
“Robin, I’m sorry. My knee is infected,” she says. There is a long pause. I wait. For the inevitable. But she wants me to fish it out of her. Laurie must really feel bad; I usually can’t shut her up to squeeze in a word of my own. “You’re not going?” I say, knowing already and seeing only stunning white light. “It’s just not going to work for me. I’m sorry. I really wish I could go,” she says. And I try not to panic or say anything to make her feel worse. So. Why on earth? What’s next? And how?
The day before I am to leave for Australia. Greg carries his rifle down the stairs, and together we traipse outside and around the pond to shoot the Heart Drive from Marika’s old computer. It bothers me that the box of Marika’s life-before-cancer could get swallowed up and lost forever in Greg’s vast accumulation of stuff upstairs. The Staples tech had said to destroy it. Destroying is a job for my warrior son; putting the pieces away in the right place is what I do. This is the last item on my list of things to take care of before the trip. And Greg may be called to his new job in Afghanistan before I get back. So we place the little black box at the base of the willow tree that still stands despite being shot at for the past year.
BAM! LikeBAM! He shoots. All the homework assignments, Marika’s pre-cancer concerns, the girl-life contained in that small black box, LikeBAM! The long-gone girl who preceded the almost-adult daughter I miss, BAM! BAM! No fanfare. No fireworks. No explosion of computer chips or chorus of hallelujahs. Just two surprised geese taking off fast from the pond at the first of the five shots. I hold back my tears as we examine the remains of the box. Satisfied that the contents are indeed destroyed, we bury it deep into a muskrat hole by our feet. This is Marika’s pond. Part of her will always be with it. I curl my lips around quivering teeth, and clamp down hard.
Back inside the house my friend Liz types away on the computer. Greg disappears upstairs, and I hover nervously over Liz as she fidgets with my iPad, and enters the email addresses of the women who have been gathering month after month to hear what I’ve been writing. Time is running out as I scour my contacts and my memory for all the strong women in my life, to add them to the list. “How am I going to do this?” I ask Liz. “You go to your gmail account on your iPad, you open up this email, then you –” “No, I mean the whole thing. Tomorrow. This trip,” I say. “It isn’t right. What on earth am I doing going to Australia—alone—to spread my daughter’s ashes?”
For my holiday gift I’d asked my son for a shooting lesson. So on the unseasonably warm afternoon of Christmas Eve 2011, Greg comes downstairs with two long guns. Trembling, I wrap up in scarves, earplugs, earmuffs and hooded jacket, and follow him out the door and across the lawn. He stops just short of the pond, props his shotgun against a tree, and hands me the rifle. Remington.22, he tells me. And then he shows me how to hold, load, and ready it for shooting.
“You don’t pull the trigger,” he says, “you squeeze it. You hug it with your whole hand.” Willing my eyes to stay open, I squeeze and shoot. It’s not nearly as loud or as jarring as I’d expected. Marika would have said, “LikeBAM!” Hardly drawing a breath, I shoot again. Bam! The sky echoes with each ferocious bark. Handling this loaded rifle, cradling it so close, and then blasting the air—LikeBAM! —I am spellbound, conscious only of being just on the cusp of control or calamity.
We had placed two targets against a large willow tree across the pond. The targets were a gift I’d painted for Greg. The one I’m to use is a cartoon image of a rotund woodchuck with a bulls-eye bellybutton. We train the scope, first focusing far, and then zooming in so every breath and movement I make is exaggerated in the scope, and the woodchuck bounces in a dizzying scene. When it settles, I hug the trigger. LikeBAM! With no movement of my target, no trace of a hit, I aim and shoot again. BAM! I continue to load the magazine and shoot. My woodchuck hasn’t budged. Greg fires his gun and with each shot creates small clouds of smoke before his target.
When our bullets are spent, we walk together around the pond to inspect the targets. Surprisingly, the bullets sped through mine without moving it and I’ve hit the woodchuck’s belly twenty-six out of twenty-eight times. Pleased with myself, I’m hooting and cheering. Until we remove the targets from the base of the willow. “Oh. No,” I wail, “I’ve been shooting clear through to the tree. We’re killing the tree.” “Oh, well. ‘Goes with the territory,” he shrugs.
Some things, like the differences in our respect for life and living things, will never jive. I say a silent apology to the tree and then follow Greg into the kitchen. He takes the two rib-eye steaks I got for our supper, pierces them several times, plants them in plastic zip-lock bags, and marinates them in Johnny Walker whisky. He pours two glasses of the whisky over ice.
“Did Marika ever shoot? What’s the best prank you ever pulled on Marika?” I ask, thinking I’ve got him relaxed and ready to chat. “What would you fight for or even die for?” “Mom. Just enjoy the Johnnie Walker. Okay?” And then, “Do you still have my extra passport photo somewhere? I need it back. I’ve got a job in Afghanistan as soon as I get my papers cleared.” He’s leaving again. Whatever holiday I’ve been avoiding is now totally shot.
Later that night, on the first Christmas Eve without my daughter, the single drawer of the small night table next to my bed is stuck open. I rarely use this drawer but I had rummaged through it for Greg’s passport photo. Now the drawer is jammed and I can’t get it to close shut. I slam it and it breaks. When I wrench it back out, a tiny green cloth packet falls to the floor, and I remember a Christmas long ago when Marika had no gift to give me. She had scurried upstairs, bounced back down, and handed me this small pouch of jeweled sequins. Now I empty the contents into my hand. Sparkling butterfly-light jewels catch the lamplight that blurs through tears. The remaining sparse contents of the broken drawer lay on the floor. And in the middle of the small mess, bound with shiny red holiday ribbon, sits a tiny book written and illustrated by Marika in 2001, when she was eleven years old.
Book of Wonderful Memories. From: Marika. J.W. To: Robin Botie 1.The costume parade. You were there for me every step of the way! I’ll never forget your face when I got 4th place. You were so happy! 2.That one teddy bear that you would look at when we were fighting and tell me a story of you. Mom … 5.Even with the most boring books, it seems so exciting with your voice. … 6.When I’m scared you are always there for me … 8.Always loveing even when I’m a brat.
Mareek! Are you here? I cry out. Are you helping me get through Christmas? What the heck am I doing in this drawer anyway? It’s almost midnight and I’m holding the most precious gift, now received twice over. Why does it feel like you’re watching me? Sometimes it’s hard not to believe in ghosts, in after-life. Here I am, holding this tiny book you made ten years ago, before all the road trips, before cancer. Before our mother/daughter divide. Ten years ago when you adored me—Maybe you never stopped adoring me—Maybe you just stopped showing it.
She’d made me a book. And now I am making a book for her. She wrote. So I’m writing. Words are my new medium and I’m using them to paint our portrait, mixing words like I used to mix colors. All the sweet or savory, whispering or roaring, bland or bewitching words that dance in my mind. Like : meandering, infinitesimal, crimson, petechiae…. Reading my book aloud at the Feed and Reads, occasionally I glance up from the pages to peek at my audience, their jaws dropped and eyes begging me to continue. My gift to Marika, I tell myself. Really, though, she has gifted me, and is gifting me still.
My first manuscript is a plot-less lament to my dead daughter. But that doesn’t matter. Because, daily, I lose myself and find myself in what I write. Some new determination to live, lives on. And I feel hope. It’s back. And hope implies future. So I continue to write, and look forward to the sharing. And I love my book like it’s my daughter.
It is the day before my first Christmas Eve without Marika. No Christmas this year. No Chanukah. Holidays seem pointless without Marika. So I’m erasing the whole season. Instead I’ll clean and write and do un-holiday-type things. Like clearing out the last of Marika’s belongings.
I had surprised myself, and others, by how quickly I got rid of her things. It had been eerily easy. Somewhere, someone said cleaning up after a dead loved one is an important aspect of achieving closure. Closure—hah! Not for me. It is more like a desperate urge to re-home the many pieces of Marika. I am seeding the world with her stuff. It requires a great trust in the universe to find the right new person or place for the pretty prom dresses, the high-heeled shoes, stuffed animals … and now, the old desktop computer in her room. Marika hadn’t used it since shortly after she got cancer, after my father gave her a new laptop for college. Staples will recycle the old computer for ten dollars.
Rachel comes over to help me get it into the car. It feels less intrusive to rummage through Marika’s underwear drawer or her journals than to go anywhere near her old computer. But we briefly check it for anything I might want to keep. Nothing. I crave the writings of the almost-adult Marika, but this computer predates that. So Rachel tears it from the tangled mass of cables and wires, the arteries and veins that bind it to home.
“I ended up drunk in the ER every weekend. It was like I was suicidal,” Rachel tells me as she pulls cords out from under the desk. I keep my mouth shut. “When I went into Rehab, I was out of contact with the world for twenty-eight days. No phone, no computer,” she says. “Are you back at work now? What was that last job? Working as a caseworker?” “Yeah. I had to resign when I went to Rehab. I loved that job.” “That was a neat job,” I say. She carries the computer down the stairs and I follow. “Can you read some of the book to me?” she asks, after she shoves the computer into the car. She reminds me of Marika as a young child begging me to read. But before I can begin, Rachel’s cell phone rings. She listens briefly.
“What are you doing in a bar, you goofball? Get out of there. Fast,” she says. Then, “You’re gonna throw sixty days of sobriety down the trash for a girl?” As she speaks to this person in crisis, I am awed at how together Rachel sounds. She seems to have found herself after this difficult year of loss, substance abuse, and Rehab. Her head is in a good place, whereas I feel lost. After the last three sad but blessed years of knowing exactly why I was where I was, I now find myself directionless.
Later, alone in the Staples parking lot, I can barely lift the computer tower out of the car and into a shopping cart. I know I’m in trouble when, wheeling the loaded cart through the automatic doors, I have a flashback to last year at this time when I pushed Marika in a wheelchair through similar doors at the hospital. But soon, two Staples technicians are operating with screwdrivers and pliers to pull the ancient computer apart. The younger tech, about Marika’s age, extracts and then hands me the hard drive, a small but surprisingly heavy black metal box. It says “Fragile” on it and contains all her old high school homework, snippets of printed conversations with friends, playlists, … young girl-stuff locked up inside. It is like holding Marika’s heart. The technician draws stars in blue ink on the white label.
“Drill here. When you get rid of a computer you have to destroy the hard drive,” he says. Too mesmerized by the mysterious box in my hands, I don’t question why Staples doesn’t just take it and complete the job themselves. Through sobs, I ask the tech whom to pay the ten dollars to, and he tells me there’s no charge. On the verge of a major meltdown, I take Marika’s Heart Drive and flee.
My son, on his way out just as I arrive home with the somber little black box, offers to blast it apart at his next shooting session. Remembering how proud Marika had been of her brother shooting a shotgun off the deck during one of her parties, I give it to Greg. After all, maybe he needs some closure.
