Tag Archives: end of life

Duetting: Memoir 57

Duetting: Memoir 57 Robin Botie of Ithaca, New York tells her dying daughter her birth story

Mareek, I want to tell you the story of your birth, I rambled on in my head as I rubbed my dying daughter’s feet. I could not remember if I’d ever told Marika that story. This was on the third day of March 2011, shortly after I’d signed the papers to end her life. Consumed by the unfairness and all she would be losing out on, I was feeling like the worst kind of thief. I could not yet imagine my own loss, how that would feel. I’d failed her. I couldn’t tell my mother or even Laurie. There was only one day left to get close enough to death to accept it, to learn to love it. So, standing at the foot of her bed, I brought up the memory of when she was born, and then I tried to convince myself of everything I’d ever heard about death: Death means freedom from pain. Death is a transition, not an end. Our dying begins the moment we take our first breath so death is simply the last part of life.

Many rave about watching a birth, welcoming oncoming life that blooms from womb to world. And your birth, Mareek, was one of my most magnificent moments. But really, witnessing the exiting of life, even when walloped by sorrow, is awe-inspiring. Life, when it enters the world can be traced back to the source of the seed. But its departing is shrouded in mystery. A year and a half earlier, I had tried to watch as life evaporated from the still form of my father into nowhere. I stared, transfixed on an invisible drama, detecting only the signs of a soul having already taken flight: his just-stopped pulse and empty lifeless eyes. My father’s eyes were half open, dark black marbles that caught glints of light, even at the end. I wondered, for how long could he still see me as his mouth opened and closed, opened and closed so slightly like a dazed fish out of water gently gasping for breath? He seemed unaware he was not catching any air towards the end. He lay there calm and still while his family shook in sobs. I watched, but could not tell if the life ebbed out of him slowly or if it left as in the flick of a switch.

Where life goes in the time it takes for a heart to stop beating is an astounding mystery. Is the life locked dormant inside or does it dissipate into the negative space between those grieving? Does it escape into countless particles of dust? Are there a gazillion invisible, homeless souls freed from their earthly shells, crammed around us, hovering over the ones they loved and left behind, hoping to be reborn?

Mareek, I’d named you Marika Joy before you were even conceived. Yes, I knew you were out there waiting for me somewhere. Like the crocuses that herald in the spring. I always knew I would have a daughter one day. And I’d love the warmth of your dark-haired head on my cheek. ‘Marika’ was the most beautiful, magical name I’d ever heard. You were named after a flower, a Twelve Apostles Neo-Marica. A walking iris. And Joy, for your paternal grandmother, a precious life snuffed out too soon by cancer. A spark of her would live on, be reborn with you. Yeah. Too bad we couldn’t have erased the cancer genes from those sparks of Grandma Joy’s.

You were late, Mareek. You were supposed to arrive in April, the month of your father’s and my birthdays. You were taking your time but Doctor Kyong wanted to go on his vacation. So he had me choose a day in May from three convenient dates. I was embarrassed by this as all my pregnant friends were having natural childbirth with no interventions, no drugs. Back then childbearing was like being in some sort of Amazon birthing marathon, but being ten years older than everyone else, I had to comply with a different set of rules, or lose my adored doctor.

I chose May third. Three letters each in May and Joy. And so, early in the morning on May 3, 1990, your father and I arrived at the hospital after leaving friends in charge of your brother, our businesses, and the pets. The nurses gave me some drug, oxytocin, to induce my labor. And then an enema. But there was no progress in my dilating. We waited. And walked and waited. Wearing the special kimono-style birthing robe I’d sewn from fabric with joyful bursts of blossoms, we walked the halls of the hospital and waited all day. You were already finding ways to defy demands and doctors. There was little that was natural or unplanned except you simply were not ready, were not complying with anyone else’s agenda but your own.

I don’t remember pushing, Mareek. I don’t remember pain. I remember waiting, maybe a little impatiently, to see your face and be on our way to our great adventure together. My water was broken for me in the afternoon and then there were fierce contractions. I growled like a wild animal and hugged your father hard. They injected me with three paracervical blocks for pain relief, and finally, just at dinnertime, supported by your father, I squatted, extending one leg out like a Russian dancer. After some grunting I was cut open to make it easier for you. Then I ripped open even more. Suddenly there was a great avalanche inside me. And you tumbled out, surprised, kicking and demanding, What’s for dinner, Mom? You chomped down eagerly, nursing right away as they stitched me back up. You were purple and bruised. You were perfect. I loved you immediately. My Marika Joy. A true Taurus, my friends said. Everyone expected you to be solid and steady and strong. And stubborn. And you were.

 

 

Duetting: Memoir 49

Duetting: Memoir 49 Robin Botie of Ithaca, New York, photoshops a duet of a song written by her daughter who died, in a consideration of The Middle Ground.

“What’s Middle Ground?” I asked Laurie, my sister-the-doctor, at the beginning of February 2011.
“Well, first of all, it’s not a medical term,” she said. “Basically, ‘Middle Ground’ refers to a shift in the treatment plan from an aggressive, do-anything-and-everything-necessary-to-keep-someone-alive approach to a more selective one. So, if Marika’s heart stops, we’re not going to shock it or pound on her chest, but if she gets a reasonably easy-to-treat condition (like a bladder infection or strep throat), we would go ahead and treat that. In a way, ‘Middle Ground’ is a bit like ‘Limbo’, the apartment Marika shares. It’s a place somewhere in between. Between knowing that you’re winning the war and when you get those first inklings that you’re going to lose. So you wait, in Limbo, for a sign, for some hint as to when or whether she can come up with one more miracle.”
“Oh,” I said, and Laurie could hear my dread.
“Middle Ground does not mean that anyone’s giving up,” she said, “but we all know it’s the first step toward that end, the end that no one is yet ready to acknowledge.”

So we were one step closer to that place into which I had not allowed myself to go. Outside, in the ground under the snow, tender tips of crocuses emerged into the wintry world before their time. They’d be gone before spring.

After the late night call from the Intensive Care Unit, when I got back to the hospital, Marika was floating in and out of consciousness. Sleeping Beauty, strung all over in plastic lines, was once again on center stage attended by nurses, aides, all types of technicians, and now, multiple teams. Besides the ICU docs, there was the somber cluster of oncology docs, a very animated squad of infectious disease docs, and a new tiptoeing team from Palliative Care. Bevies of doctors, social workers, and residents took turns entering and exiting her room, taking notes and quietly exchanging comments. A mysterious respiratory infection, they said; we wore masks and gowns around her now. No one really knew why her lungs were failing. When she became the least bit awake, she tried to speak. She yanked her cords and tried to climb out of bed. They gave her more drugs to quiet and contain her. She was fighting everything now.

“Please don’t speak to your daughter,” one of the nurses said to me shortly after I got back. “She is at maximum dosage levels for her sedation drugs, and when she hears you it is difficult to keep her sedated.”
“I can’t talk to her?” I wanted to make sure I’d heard right. In disbelief, I quietly rubbed Marika’s feet. But soon, when I whispered to a nurse, Marika heard me and woke. She pointed at me with an incriminating index finger, as if she could shoot a dagger straight through me. She lowered and then raised her hand, slowly, like a ghost, and suddenly gave me – The Finger.

The horrified nurse sedated her more. Hurt, and afraid of what Marika might do next, I kept quiet. But what I really wanted to do was shout to all the doctors and nurses, “Damn you all! She’s my daughter!” I moped for hours in a funk until I learned she’d given her father the same greeting earlier.

A day later, while I silently rubbed her feet, she opened her eyes.
“Mom!” she mouthed through her tubed and taped lips, looking straight at me. She extended her arms like she wanted to hug me. Her face scrunched up and turned red. Her mouth stretched the tape with a concave bottom lip. She was crying.
“Mareek,” I called, and left my station by her feet to step closer. “Oh, Mareek.” I reached out to hug her. But before I could touch her, the nurse stepped up the sedation. Marika’s eyes rolled back as her lids shut. Her arms dropped in slow motion. Her words, her thoughts, everything was snuffed out. I stood over the still form of my daughter, not able to remember the last time we’d hugged. In my mind I replayed the scene. She’d reached for me. Her eyes had said everything: “Mom, I’m scared. Hold me; help me. I’m sorry. Thank you. Mom, I love you.” I stared at her face and hugged myself, and returned to the foot of the bed. And then the nurse asked me not to rub her feet.

I was blind-sided. I stood there dumbfounded. Foot-rubs were my only connection to my daughter now. I couldn’t just let her lie there alone. She’d wanted to hug me.

Greg, on a tentative seventy-two hour notice to return to Afghanistan, came to Strong to say goodbye to his sister. Marika had known he was hired to go back as a security agent. But she was unconscious now and seemed to hear nothing. He didn’t stay long. He whispered goodbye and turned to go. Suddenly she lunged for him. She flew over the bedrails, tearing the lines that tethered her to the IVs. She grabbed her brother. In seconds, she was stopped and sedated some more.

Rachel arrived for a visit, and I darted out for a fast trip back to Ithaca. Rachel’s eye make-up, the tight skinny jeans and French-tipped nails made me realize how long it had been since I’d seen Marika up and dressed. I must hurry home, I told myself, to renew my driver’s license that would expire soon. Mostly though, I just needed to get out. I needed to drive far and fast.

Rachel ambled down the long hallway with a huge rainbow balloon trailing behind her. And two hours later, at the Motor Vehicle Bureau, I stood before a clerk who tried to get me to smile for the photo ID that would be with me for the next eight years. For eight years, my eyes in that photo would say, “Marika, we need a miracle now.” I faced the camera unable to think of anyone or anything else. Rachel sat with Marika and held her head, reading aloud the goodbye letter she had written, just in case. She drove back to Ithaca that evening, stopping at a liquor store for a bottle of Svedka Vodka to tide her over. I drove back to Strong early the next morning crunching on an apple to keep awake. The Big Meeting was scheduled with the Palliative Care team. So Greg drove to Strong, as did our social worker. My children’s father and his wife were already there. We were going to discuss The Middle Ground and “options,” things I wasn’t able to hear yet. I didn’t want to listen to any of these people. I just wanted to rub Marika’s red painted toes and watch for the tiniest twitch of her pale brow.

 

 

 

 

 

Afraid of Dying

Robin Botie of Ithaca, New York, photoshops a beach to illustrate the life and death cycle.You’re afraid of dying, you say, afraid of dying alone mostly. I wish I could tell you how this thing called death works and what dying means. Or where we end up in the end. I wish I could alleviate your fears, and tell you the best comes after life, that there will be music and bright lights and long-lost loved ones welcoming you. But I’m still trying to convince myself there’s more than nothingness, that after we die we reach some eternal heavenly state of consciousness, if not an actual heavenly place.

All I know is that for eons of time, trillions and gazillions of other beings before us have made this journey of conception, life, and then death. That this is part of a great cycle. And that maybe, possibly, death is not the last stage.

What if we think of this life-death cycle as a beach? Over the course of your lifetime you crept along the sandy shore, and then toddled, walked, and eventually waded into the water where you swam and dove through the waves, never noticing the tide gently dragging you out ever farther. And now every breath takes so much energy and struggling. Yet you keep swimming until there is nothing but ocean and sky, and soon you become part of them both. It’s like when you were born. You had no choice in being born, no control. You yielded to the forces pulling you into the then unknown world. Now it is time once more to be carried along into another great unknown.

You will not be alone at the end. There are those who will be honored to sit vigil with you and make you comfortable at this sacred time. Let’s call Hospice. Allow people in. I will come myself when I can, wearing my red-beaded necklace, the one like yours, because greeting death with red beads seems both gutsy and appropriate. I’ll hold your hands and listen to your memories, or to your breathing. Maybe I’ll rub your feet.

And finally, when you are gone to the great wherever, I will always love you and remember you. Whenever I wear those beads I’ll think of you laughing boldly in a bevy of friends, immaculately bedecked with makeup and perfectly matched jewels.

 

What can you do to assuage a loved one’s fear of dying?

Free to Fly

Robin Botie of Ithaca, New York, photoshops daylilies and hosta plants, and birds flying free in a garden of grief.“You should write some final wishes. Just in case,” I’d told my daughter, like I was asking her to make a shopping list. It was back in November 2010, before her stem cell transplant. She was going to kick cancer. So, except for handing me her healthcare proxy, “Here. You can have this,” we weren’t discussing death or dying. In fact, I’d often scolded her for living her life like it was an endless party, like it could never end.

Marika’s final wishes were found the day after they pulled the plug on her life support. I was the one who’d had to sign the papers. That night, alone in her room, hugging her belongings, I found her poems. And now I have to wonder: did she have any idea what a gift this poem would be?

FREE ME by Marika Joy Warden

Free me.
Let me be.
Spread my wings for me, for all to see.
You hold me, you’re holding me
Back too tight, I can’t break free.
The cells, the cells of red and white,
They’ve given flight to my family,
But not to me, because I’m free.
Free, up above the world I know,
Away I’ll go, don’t hold me so,
Don’t hold me back. I’m stuck in black
And darkness here. The light’s so near!
Just do not fear. I can go now.
Some way, somehow, I’ll learn to fly
I’ll reach the sky, float over you,
Look up, it’s true. You’ll see me there
With regrown hair and regrown hope,
Surpassed the slope that I slid down,
Down to the ground, but now, no more.
For now I soar above the sea,
No catching me ‘cause now I’m free.
You have freed me.

Leaves of daylilies grow skyward like wings lifting in the wind. Hostas raise hundreds of leaf-hands in search of the sun. It’s June, five years later, and I’m whirling in a sea of fragrant honeysuckle. Singing as I pull weeds and water new plantings, I watch every bird and butterfly, each duck and goose that flies over the pond. Fireflies. Damselflies. Moths. Which one will linger, circling over me? Which one will land and look my way?

Preserving Family Memories

Robin Botie of Ithaca, New York, photoshops an image of her deceased father from an old VHS videotaped recording converted to DVD.On a small computer screen, in a blurred DVD converted from an old VHS recording, bleared further through my tears, I watched my father laughing. I’d last seen his face in 2009. He wasn’t laughing then. At the end of his life, he was angry, ready to go. Done.

Now in the recovered footage, My father sat in a row alongside his siblings and in-laws. The seven of them smiled nervously, lined up in front of a video camera in 1993. My father, always fascinated by cameras, seemed amused to be on the other side of this newfangled movie-making instrument. Within minutes, he warmed to the camera and to the questions his niece and daughters were posing to the group. He laughed, talking on past his turn. It was hard to shut him up. I’d forgotten what he was like when he was happy. The video zoomed in and out, focusing on the group, closing in on him.

Videotaping aging relatives. We’d all noticed the changing population at the family reunions. “To preserve the family history,” my cousin Brigite, the one who came up with the idea and produced the project, had said.

But for me, years later approaching Father’s Day, fixated on the fuzzy computer image, it was the preservation of my father’s bright face and the sound of his laughter. And of all the pixelated memories of being my father’s daughter. For days after, I talked to him, and walked in the warmth of his smile.

 

 

What memories are brought up for you by viewing photos or video footage of your loved ones who died?