Duetting: Memoir 16

Duetting: Memoir 16 Robin Botie of Ithaca, New York asks, Why is my daughter turning yellow?"

For Marika’s high school graduation gift I was supposed to take her to Greece, but she got cancer instead. It looked like she’d never get her gift. Then, almost two years after her graduation, during a time of remission, Marika came up with a different mission: to get to Australia. On her own, she cleared it with her doctors. By the time she finally presented it to me, everyone else knew about her plan. The only thing left was to purchase the ticket. It was very scary to me because she would travel alone, meeting up with a friend later. But after all she’d been through, I couldn’t say no, so Australia became her belated graduation gift. It was Marika’s last trip, ten months before she died. Looking back, I smile when I remember I gave her Australia; it was possibly the best two weeks of her life. She fell in love with the place and intended to make it her home. It is the end of January 2012 now, and Marika’s been dead almost a year. Soon I, myself, will go to Australia to scatter her ashes and find out why she loved it. This is my mission now. It is the last thing I can do for her. Besides, I don’t think I can live without a mission.

A mission infuses one with an important purpose, a direction. A goal for the greater good. A mission might collide into your comfort zone, hurtling you off to who-knows-where in your effort to carry it out. But it fuels you. And it answers the question: Why am I here?

Missions change. All the time. There were other missions back in the summer of 2008. We had returned to Strong Memorial for the second round of chemo after almost two weeks at home following graduation.

Scrunched up in a reclining chair by Marika’s bedside, I was warmly wrapped up in a dream one morning. Then, in the melting moments between sleep and awakening, the nightmare I took to bed just hours before and thought I’d be wrestling with the whole night, hit—smothering me like a blanket of bricks. Cancer. The day was contaminated by it before I even opened my eyes. A sudden stirring made me blink, and I found the entire oncology team on morning rounds, stuffed into the hospital room. I looked over at Marika. She was still asleep.

“Good Morning,” said a cheery, deep voice.
“Morning,” I managed.
“You had a question, Mom?” Doctor Phillips asked. I hated his calling me Mom, as if he was my seventy-year-old son.
“Oh yeah,” I remembered, “Why is my daughter turning yellow?” I was suddenly awake, aware I was supposed to take notes when the doctors made their rounds. But everything was already moving too quickly. I heard,
“Blocking the flow… bile… from liver… infection…” and something like “collect-sister- itus.” How would I report this back to her father? He had to be in Ithaca weekdays for his plumbing business but wanted to be kept in the loop. My two main missions were to keep Marika safe and keep her father informed. But at that moment, understanding or passing on technical information was beyond my capabilities.

Part of my problem was I missed half of what was said because of daydreaming. When overwhelmed, my mind would fly far away, leaving the rest of me behind looking totally engaged in the immediate goings-on. Sometimes I escaped to sheep-dotted mountainsides in Scotland. Most of the time, I just got stuck redesigning the bleaker aspects of my life.

Part of the problem was I didn’t get much sleep in the uncomfortable reclining chairs. And then there were the hourly vitals checks and lights left on all night. It didn’t help that every third day I woke up in a different room. Marika, with her various complications, got trundled back and forth from the oncology unit to the ICU to the transplant unit and back to oncology. Always a different room in oncology. And I got to pack and unpack all our stuff, sometimes in the middle of the night. Not to mention the logistics of moving home each weekend. To stay flexible, I kept most of our things in the car which was parked a whole hike-and-a-jog down and out and around the other end of the enormous structure that was Strong Memorial. My mission was constantly clobbered by logistics.

Marika was the adult running the show and she didn’t like me shaking things up. Most of the time it was easiest to simply go with the flow, and not question too much (like Marika turning yellow). It was not part of my mission to wonder how many times she might check in and check out of the ICU, narrowly missing the clutches of death. So I’d lay low in a cloud of oblivion. Until something threatened to get in the way of my protecting Marika or getting her well enough to send off to college. I heard,
“… inject dye … implant a drainage tube … gall bladder surgery next Thursday.” It was time to focus on what was going on.

 

 

 

 

 

 

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Duetting: Memoir 15

Duetting: Memoir 15 Robin Botie of Ithaca, New York photoshops a poem written by her daughter who died, placing it over an image of silhouettes.

Marika’s classmates and teachers had been sending notes of support, and “Marika Kicks Leukemia” tee shirts circulated throughout Ithaca High. In a daze, but smiling, Marika listened to her benefit concert over my cellphone held to her ear. The guidance counselor called daily to see if she could attend the graduation, but no one knew for sure if Marika would be able to walk, sit up in a wheelchair, or even tolerate the trip back to Ithaca. At the last minute the Roc Docs said yes. In a stupor of disbelief, I drove her home.

There was plenty to worry about. Marika could pass out at any time. It was hot, and the red wig was heavy under her cap. She could barely walk, but insisted on walking. There were stairs. Her last name beginning with ‘W’, she would shake the same germ-riddled hands that shook all four hundred classmates’ hands before her. Concerned about her meager immune system, I presented her with a pair of purple latex gloves. She ignored me. She was uninterested in instructions on how to gracefully avoid handshakes and hugs. How would she hold up during the half hour wait in line the students had to endure before claiming their seats? She was determined to do the whole thing the way she’d always expected. So I left her off as close as I could to the stadium at Cornell University where the event was to take place, where there was already a traffic jam, long lines, and huge tangles of people and germs.

We were all there at Schoellkopf Hall. Laurie. Greg. Rachel. Marcus. Marika’s father and his wife. Our mother-daughter tribe. Teachers Marika hadn’t seen in weeks. People I hadn’t seen in years. I was hugged repeatedly as Laurie and I made our way to the spot high in the bleachers that Rachel had staked out for us. The band began to play and the class of 2008 filed in and filled the expanse of seats below us. Teary-eyed, I kept my gaze fixed on Marika during the speeches. Then, finally, the students rose from their seats.

Marika stood. Soon, she was walking. She was next. The stairs—suddenly I couldn’t see through the crowd—she’d somehow climbed the stairs when her name was called. There was a burst of applause. There was thunderous clapping, cheering. She smiled, embarrassed, up on the stage. I had to stand to see. People all around were standing. She stopped before each of the graduating officials to receive their blessings. The audience stomped and roared. Marika stood there, astonished, surveying the scene for what seemed like forever. I clapped hard as I could. I cried.

The bleachers shook wildly when she stepped down off the stage. The rumpus continued as she headed back to her seat and was ambushed in hugs. And as the din died down, I scanned the crowd. How astounding it was to be held in the hearts of so many. I’m her Mom, I smiled through tears. Right then I knew I’d always remember the sheer glory and magnificence of that moment. What I didn’t know was how later, and forever, the memory of Marika’s graduation would stir up an ocean of pride and tears. Like it was just the other day.

 

 

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Duetting: Memoir 14

Duetting: Memoir 14 Robin Botie of Ithaca, New York photoshops a picture of her daughter under sedation, resembling the John Everett Millais painting of Ohelia.Only three weeks into cancer, Marika was on life number three. The Roc Docs noted in her charts, “Reactions to treatments—fast and horrendous.” Reluctant to leave her side, I became a slow-moving aerial drone, on top of her constantly, watching and waiting.

“Mom, I can’t see,” she hissed, days after her seizures, when I turned on the television. “Why can’t I see right?” She punched the nurse-call button and tried to yell. It came out as a hoarse whisper. “I’ve lost—everything,” she tried to tell me. Life as she knew it was indeed lost. Her voice was gone. She was losing her hair. Soccer and singing were out. And now almost all the vision in her right eye, and some in her left, was gone. She knew, with impaired vision on top of seizures, it would be a long time before she could drive again. Driving was her independence, her freedom. I was watching a trapped animal, and there was nothing I could do. Stunned by her fury, I shrunk into a corner while she screamed. At the doctors. At nurses and aides.

She demanded to go home, but she’d developed a fever and a mysterious pain in her right shoulder. After tests and more drugs, the Roc Docs decided she had a swollen pancreas. Then the pain suddenly subsided and we were sprung from Strong.
“No raw fruits or vegetables,” the Roc Docs reminded us as I packed the stuffed animals, candy-grams, and other accumulated gifts into pink plastic hospital bins.
“Well, I’m having sushi for dinner,” she stated.
“No sushi. Nothing raw. No flowers, no dirt. No germs. No friends with colds.”

With a long list of instructions, fifteen different prescriptions, and orders to take her temperature several times a day, we left Strong. It was scarier than the time I brought home my firstborn. So as soon as we reached Ithaca, I invited our mother-daughter group to the house.

The living room was packed when Marika asked, “Mom, do you have scissors?” Then she sat with a towel at the dining room table, and her friends cut off her ponytail and shaved her head. Music played and everyone cheered. We ate her favorite cooked foods, grilled steak and Wegmans boxed macaroni. And later, as she and I counted pills out into plastic boxes, I couldn’t stop wondering how this daughter of mine could be so brave. And beautiful, even without hair.

For two nights Marika and I slept gratefully in our own beds. Then a fast-rising fever sent us racing to our local hospital. Marika was sent back to Rochester in an ambulance with her father while I followed behind in my car. But I couldn’t keep up. Shortly into the trip, my heart sank as I watched the speeding ambulance disappear ahead of me.

She arrived in Rochester in septic shock, with breathing difficulties and very low blood pressure. She actually asked to be intubated and put on the breathing machine again. So by the time I parked my car and caught up, Marika was back in the ICU. The shoulder pain thought to be pancreatitus turned out to be pneumonia in both lungs, and a virus had invaded her heart muscle. For two days the ventilator was set to maximum levels. She was given end-of-the-line, last-rites crisis drugs to keep her blood pressure from falling through the floor. I stared at her, hugging my sides to hold myself together. Except for her shaved head she resembled Ophelia in the John Everett Millais painting. Ophelia lying still, and singing. In a river. While drowning.

In a few days, still on the ventilator, Marika was awake with a pitiful look on her face. She patted her stomach whenever anyone entered the room. “Hungry,” she spelled out on an alphabet board, unable to speak through her breathing tube. Half dazed, still under sedation, she could hardly communicate. Giddy to see her finally awake, I couldn’t think straight.
“They can’t feed you anything; you’re still on the respirator. That’s dinner,” I said, pointing to the bags of IV nutrition slowly emptying into her system. The nurses were nervous because she was supposed to be sedated, and instead she was getting more and more agitated. Marika glowered at me like I should do something. She grabbed a marker, and drew a long urgent scrawl on the backside of the alphabet board, and glared at me with desperate eyes. I had a sinking feeling I knew what she wanted, but didn’t want to mention it in case she’d forgotten.

A month ago, she’d written on her blogsite, “as for my graduation…we don’t know what kind of condition i’ll be in on june 26th. and prom… i’m still deciding whether or not to go. i’ve got a date, a dress and will have tickets, but I won’t have hair. ick…” It was clear to everyone but Marika, she would not get out in time for her senior prom. We were still hanging onto a tiny particle of hope she would be able to attend her graduation in another week. I was crushed because I couldn’t make it all better and I wanted so much for something to go right for her. It’s not fair. That’s what she used to say when things didn’t go her way. Since toddlerhood she’d been a strong proponent for her rights. “Not fair, not fair,” she would chant almost daily. But now she had lost her voice. So it was up to me to sing it. Only now, I, too, was mute.

The oxygen levels on the ventilator were turned down as Marika’s lungs dried out. Finally they took her off. Red, and blimped-out from all the IV fluids and steroids, she resembled the Michelin Tire Man. There were tape marks on her cheeks. Strung all over with tubes and cords, she was decked out like a Christmas tree when Marcus, her baby-faced boyfriend, arrived for a visit.
“She looks like she’s gone through the heavy wash and extra spin cycles in a commercial washer,” I warned Marcus.
He asked, “What do I say to her?”
“It doesn’t matter what you say,” I told him. “It’s all in your eyes. Just look at her like she’s the most beautiful thing you’ve ever seen.” Why was he asking me this? I’d run out of words weeks ago, when cancer first hit. We entered the room and he smiled adoringly at her. I almost melted at his smile, myself. And as I tiptoed out, I heard him hesitate and gulp,
“Uh, boy Marika, you sure have a lot of wires coming out of you.”

Days later, on the evening of her senior prom, Marcus came back. The nurses had decorated the room. White balloons and crepe paper. Music played from an old boom-box. They’d dressed Marika and propped her up in bed so that the lacy white prom dress hid the wires and dangling tubes. They topped her off with the red wig my mother had bought. And on the bedside table, set festively on doilies, were two containers of red Jello, the only thing I found in the cafeteria she could swallow without gagging. There was a great stirring in the hallway when Marcus walked in. Almost seven feet tall, handsome in his tux, he carried a bouquet of red silk roses. I scurried from the room. In tears. In grateful peace.

In the hospital there really was something peaceful. For me. For the first time in years Marika wasn’t fighting me. She focused on her disease and the medical staff. I was not the enemy. We even collaborated sometimes, us against them. Like the time we ‘accidentally’ unplugged the monitor when no one responded to the call button. Mostly though, I hung back and didn’t interfere, knowing the side effects of our actions could be horrendous. Knowing that any move we made could start a cascade of consequences. And I wondered how come Marika got to be so bold? How did she not have to consider the consequences?

“I’m going to my graduation,” she announced, to me, and her doctors, two days before the event.

 

 

 

 

 

 

 

 

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Duetting: Memoir 13

Duetting: Memoir 13 Robin Botie of Ithaca, New York, photoshops a picture of her daughter who died of leukemia to illustrate the confusion and chaos that follows the initial diagnosis of cancer.

The Roc Docs ordered another bone marrow biopsy. It was to be done by two residents, girls who looked no older than Marika. By then I knew about the trickiness of this standard bedside procedure, the need to get the right angle, the chances of missing the exact spot from where the marrow fluid was to be drawn, and the possibility of not getting enough material extracted. We asked about their success rates and the tools that were to be used. The docs assured us it would be nothing like the procedure performed at our local hospital. We agreed to give the resident-girls a chance. But if they didn’t get the sample they needed in two attempts, it would be quits.

They marked the spot with an X, and showed me the door, but Marika grabbed my hand and wouldn’t let go. Grateful she wanted me, I took my position at her shoulders once more. The resident girls missed at their first try. Wrong spot, no fluid. Marika produced a roar like a cornered tiger. They focused on their mark once again, and the world stood still. I watched Marika scrunch her eyes and grit her teeth. Three women hung over her, each in breathless silence. And suddenly one of the girls’ cell phones rang.

“Enough! I’m done. Get out,” Marika screamed at all of us. And then Marika made her second sound medical decision as an adult: no more biopsies without anesthesia. “I want Ver-sed,” she announced, coached over the phone by Laurie. Magic words. Biopsies with anesthesia meant no more bedside biopsies. And no biopsies by residents. The Roc Docs shrugged and shook their heads, surprised that insurance would cover it. So from then on, all Marika’s bone marrow biopsies and spinal injections would be done in the radiation department, with anesthesia, by an angel named Iris.

A week later we were twelve days into cancer, and Marika’s excessive bleeding was barely under control. I reluctantly left her to return home for a job review, the timing of which was not negotiable. Driving home from the hospital, I considered the logistics of the next day: the appointment to revive my neglected hair, the search for my pin-striped interview suit, and time to do laundering before returning to Strong. I recalled driving Marika to her first job interview a year before. She had worn a strappy tanktop with jeans, and heavy eye make-up.
“That’s what you’re wearing for this?” I’d asked, glancing over at her and grimacing.
“Mom, it’s for a camp job. It doesn’t matter,” she’d shot back. And she’d gotten hired, on the spot, charming them into hiring her for more money than was originally offered. She had that effect on people. I wished I had that. I approached interviews like I was going before a firing squad. I had to work hard to hide the sheer terror blazing in my eyes, my shaky speech and hands.

My cell phone rang and I pulled off the road. An unfamiliar voice gabbled on, something about bleeding lungs… adverse reaction to drugs… respiratory failure… admitted to the ICU.
“Is it serious?” I asked, still oblivious to the signs of disaster. “Should I turn around?”
“Well, your daughter has just been sedated. And intubated. And put on a ventilator,” she said in a voice that sounded like there was a “duh-uh” at the end.
“Sedated? Intubated? Ventilator? What does all this mean?” I asked, completely clueless about drugs that knock you unconscious, breathing tubes and breathing machines.

I turned the car around. And when I got back to Marika, now moved to a glass-walled room in the ICU, I learned they’d almost lost her. Respiratory failure. My daughter had stopped breathing. She was now taped and tubed, strung up and surrounded by chrome trees of drug-filled plastic bags and noisy pumping apparatus that inhaled and exhaled for her. To keep her alive. My own breath was stuck in my stomach. I watched the ticking monitors. We were tumbling yet deeper into the nightmare, into the wilds of cancer.

At six the next morning, when Marika was somewhat stabilized, after my colleagues had confirmed that indeed I must attend the review, and after a long night trying to rest on a tiny couch next to her bed, I left her again. I drove the two hours, got a fast haircut, threw on my suit, and pulled off the interview in a daze, and then traveled back to Rochester still wearing my interview outfit. Too anxious to wait for an elevator, I climbed the eight flights of stairs to the ICU, and arrived breathless at her bedside. Panting, I gratefully grasped her feet.

Days later she was taken off the respirator and transferred out of the ICU. And I was told I could keep my teaching job. Sore from the breathing tube, Marika could hardly talk or eat. But the drugs were working. Her bruises were fading, and her skyrocketed white blood cell count had plummeted to an acceptable level. Everything seemed under control, so when her father arrived I left, again, for the weekend. At home, exhausted from the difficult week, I had just allowed myself to relax when I got the phone call.
“She’s okay. Now. I was right there with her,” her father stated calmly before choking up, “Out of nowhere. Fast. Marika had seizures. Two horrific seizures. They almost killed her.”

There were no words. No breath. No grasp of time or gravity. There were no speed limits or miles or towns between home and the hospital in Rochester. Somehow I drove, and landed, stunned, back in the ICU. I crumpled at the end of her bed too shaken to do anything but clutch her feet and rub. She could have died. Twice, she almost died, and I wasn’t there.

 

 

 

 

 

 

 

 

 

 

 

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Duetting: Memoir 12

Duetting: Memoir 12If the muskrat digging holes in the banks of our pond were to continue to bore a tunnel clear through to the other side of the earth, it would end up in the Indian Ocean off the southwest coast of Australia. Marika had picked the farthest place one could go from our cozy home in the hills surrounding Ithaca. But on our first forays into the jungles of cancer, we were being carried off to a world even farther and more foreign, and there was no knowing what awaited us on the other side of it.

To me, cancer was the demise of ancient neighbors, the terrifying realm of beloved grandparents. It wasn’t supposed to happen to one’s child. Although there was Marika’s father’s brother who died at age six, of a brain tumor, over forty years before. How could my daughter have cancer? All I could think was what did I do, or not do, to cause this? Visions of all the used and refilled water bottles in Marika’s room kept haunting me. Dozens of plastic bottles on the floor, in her gym-bag. In the hot car, festering toxins. “That can’t be good for you,” I’d mentioned to her, casually, way before cancer. What kind of mother was I that I hadn’t kept my daughter safe and healthy?
“Laur, you tell Mom. Okay?” I begged my sister, as cancer moved into our lives, clobbering me with guilt. And shame. I couldn’t face my own mother.

Everything Laurie read about Marika’s type of leukemia said that once identified, it should be handled as a medical emergency. By the time it was diagnosed, Marika’s disease was already advanced. Aggressive. So after one night in our local Cayuga Medical Center we dashed up north to Strong Memorial, a teaching hospital at the University of Rochester Medical School. But before she could escape the Ithaca hospital, Marika­­­ had to undergo the cancer novice’s initiation, the bedside bone marrow biopsy.

Marika lay prone in the hospital bed, waiting for the inevitable pain. We both saw the tool. It resembled the antique hand-crank drill I inherited from my grandfather, a carpenter in the 1930s. The doctor marked a spot inches above her tailbone. He braced himself. I held Marika’s shoulders down. He drilled. She shrieked. I cried, silently beseeching him to hurry up. Her face and neck turned red. I focused on the tiny waterfall that scaled her cheek and trickled off the tip of her nose, creating a wet blotch on the sheet. I wondered how they knew I wouldn’t faint. It was taking forever. And when the longest ten minutes of our lives were over, and after the required twenty minutes to stay very still ended, Marika grabbed the nearest thing, a box of tissues, and threw it forcefully at the wall where the doctor had stood.

So by the time we got to Strong Memorial and met that week’s squad of the always-rotating oncology team, Marika was already wary of doctors. Laurie called them the Roc Docs.
“Acute promyelocytic myelogenous leukemia, or APML, has an average survival rate of eighty-five percent,” they said, “depending on complications.” They wasted no time starting an intense chemotherapy attack. Three days later Marika developed her first serious complication. “Disseminated intravascular coagulation. DIC,” the Roc Docs reported. Marika’s blood clotted inside her blood vessels but she bled from everywhere else—every orifice on her body, through every sore, through the tender spot near her tailbone, under the retinas of her eyes, and into her lungs. Always squeamish around blood, I anxiously waited for the nurses to come back with more pads as I applied pressure through soaked gauze on one of her arms. Marika cursed through a towel she held to her nose and mouth. Leaning over to push the call button, I noticed she was lying in a puddle of blood. I did not pass out. An animated movie was playing in my head. It starred my headstrong daughter’s bone marrow that had produced lots of immature unruly cells that didn’t do what they were supposed to. Like those red cells that need to carry the oxygen, and the white cells which should be fighting infections. And her impossibly undisciplined platelets that were supposed to be clotting and stopping all this bleeding. I imagined millions of tiny-legged rebellious cells sneering, careening and carousing throughout every inch of her body. And I was thinking, Marika’s a rebel—clear to the core.

In the non-patient bathroom by the elevators, regarding myself in the mirror as I washed my hands, I saw old tired eyes. My nose usually bullied other facial features for attention, but now, small shuttered eyes glared back at me in cold detachment. I sighed and turned away from the ghostly reflection. Marika had gotten all the good looks in the family. Even sick and strung out by cancer, she still looked beautiful.

It was a showdown: headstrong Marika versus aggressive cancer. The Roc Docs pumped drugs with strange names through her. Daunorubicin Hydrochloride, Cytarabine, something called ATRA that sounded like a sneeze, and something I heard as “Harass-Sea.” There were established formulas for treating this leukemia. Complying with these evidence-based approved protocols was considered the path to beating cancer. In my head the medicines blossomed into yet more cartoon characters, like Sigh-terror-bean, Cytarabine. Donna-Ruby-Sin Hydrochloride. Reactions to these chemo cocktails could be deadly. And when the ATRA almost destroyed Marika but failed to put her into remission, they gave her arsenic instead. That one I knew. In my head I saw the dead shriveled-up mouse I’d found as a kid, on top of the mail pile. “Arsenic,” my Mom had frowned at the mouse, explaining, “I forgot to leave a holiday tip for the mailman.”

Marika had horrific reactions to everything. She retched, and wrenched in pain. I winced as she threw a cupful of pills down her throat with a fast splash of water.
“How do you do that?” I asked, remembering smashing tiny aspirins in applesauce for her just a week before. She shot me a look like I had food on my face.
“Mom. I’m a cancer patient.”

 

 

 

 

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Duetting: Memoir 11

Duetting: Memoir 11 Robin Botie of Ithaca, New York, photoshops words of her daughter Marika Warden who died of leukemia.

Before leukemia, home was the place we came back to long enough to grab what we needed, whether it was a nap, a meal or a gym bag, as we rushed out again down the hill and back into the world. We rushed and everyone around us rushed. We rushed to get our homework done, to get to school on time, to go to soccer practice or to the mall to pick up some last-minute sports tape, and a fast smoothie to tide us over. As a new special education teacher, I pushed to get through paperwork that piled up too quickly, while Marika scurried between schoolwork and part-time jobs at her favorite sushi restaurant and the gym’s daycare center. There was never enough time. Maybe we liked to eat out so much because it forced us to sit still while we waited for our food.

We were foodies. She baked. I cooked when I didn’t have too much homework from my SUNY Cortland classes. I danced in the kitchen to the muffled sounds of Marika’s music. Indie rock. Upstairs in her room, where she thought no one could hear, she sang over pre-recorded instrumentals. And in the car, stuffed with singing girls, the joyful un-muffled voices made me smile as we sped off to soccer games in neighboring counties.

On the soccer field Marika was an aggressive tank, stopping at nothing to get at the ball. I winced whenever she headed it, and cringed every time she barged into another player. Marika was fierce; she was fearless. So of course she was going to fight leukemia. Early on, a friend set her up with a blogsite, Marika Kicks Leukemia. Though she lived in a dense fog the first few weeks of cancer, Marika was set for battle. She would fight her disease, her doctors, me, and anything else that kept her from living her life the way she saw it.

Life, the way I saw it, should be beautiful and function flawlessly. I always believed I could design my way into or out of anything. For me, to design is to control. It is ongoing, like breathing. Each day, before the sun rises, I envision every possible scenario so nothing can hit me by surprise. To put the most harrowing things in manageable perspective, I draw and make endless lists. There’s always a ‘Plan B’ as I bolster myself for the worst.
“I’m not worrying, I’m designing,” I insist, when accused of being anxious. And designing always started at home even though I hated being alone at home, and Marika would rather be anywhere else. But by the end of May 2008, home was where we both yearned to be.

“When can I go home?” she asked countless times as teams of doctors filed in and out of her hospital room. First this had to happen and then that—there were obstacles. It was like Monopoly, one of those endless board games we always gave up on before we could finish. We were only at the beginning of our road trip. And my mind was already racing, working overtime to find “beautiful” and “flawless,” to put them back into our lives wherever we might land. But leukemia had wormed its way into the warp and woof of our world. Cancer hit home. The tides were broken. They’d collided. Soon I, too, could not “ride along to the same rhythm anymore,” as Marika said. We were hanging over the dark craggy cliff of the gorge when Marika nearly died two times in her first three weeks of cancer.

There was no way to design my way out of that.

 

 

 

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