Tag Archives: death and dying

Duetting: Memoir 58

Duetting: Memoir 58 Robin Botie of Ithaca, New York witnesses her daughter's last breaths as her life support system is unplugged.

Warning: The following is an account of witnessing my daughter’s last breaths. A beautiful but very sad memory, it was important to me to include it here. But if you do not want to be faced with intense sadness you might want to simply enjoy my illustration and forego the reading this week.

As a mother preparing for my daughter’s impending death, I needed to see the beautiful life I’d brought into the world carefully wrapped up and tucked in snuggly. This was really happening. There was no stopping it, no stopping time. It was past the time for hope.

Marika’s father and I had promised her peace, that we wouldn’t fight. We had worked hard to hold things together. But on Friday, March 4, 2011, the day we were to let her go, we were both on the dark, uneven edges of our individual cliffs. We’d agreed to “have it happen” at one o’clock. But suddenly, in the middle of the morning, her father announced he couldn’t stand it any longer; it had to happen right then. His wife couldn’t bear to watch him suffer. So there we were. The time that had been ticking away was suddenly taken away.

The nurses asked us to leave. We would be called back soon to be with her for the end. Marika’s father, his wife, my son, and my friend Celia slipped quietly out the glass door. I did not. The preparations for disengagement of life support would not be pretty. But I wanted to be there anyway. I held onto Marika’s feet, and looked the nurses straight in the eyes through a blur of tears.

“I’ve been with her through everything else,” I said, trying to collect myself in between gasps, “I want to stay.” And they invited me to come closer to where Marika lay in the milky light of the overhead fixture that hummed on center stage. There, the nurses, like Disney bluebirds attending Sleeping Beauty, flitted about undressing ribbons of tubing, tying up cords, primping and preening her. They fidgeted with the monitors. Marika looked peaceful and trusting.

Are you dreaming, Mareek? I said to her, in my head. My Hurricane Marika, where’s your thunder now? You know you could tear out these lines and rip apart these bags of blood and drugs. You could throw the IV stands javelin-style through the glass walls and make torrential waves shatter and smash everything. You’re still alive.

I wrapped my hand around her forearm. The nurses checked her eyes one more time, shining a small flashlight under her lids. She had the warmest hazel eyes. It’s okay, Mareek.

It wasn’t okay. I hated hearing myself say those words. That was something I said when she didn’t win her soccer game or didn’t get the grade she’d expected on a school project. ‘It’s okay’ meant she’d get over it and things would work out better next time.

They unhooked the bags of meds draped up and down the twin IV stands, leaving only the painkillers. I watched Marika’s perfectly arched eyebrows for signs of discomfort as they swabbed and then suctioned her mouth. The monitors ticked. After weeks of constantly checking their displays, I couldn’t stop peeking at the blinking green digits.

There was no plug to pull. There was no lethal injection. It was simply a matter of removing the air that was being pumped in. First the nurses peeled the tape from her face and gently wiped the tape marks from her chin and cheeks. Then they pulled out the breathing tube that delivered air, and stuck another tube deep into her mouth to suction out her throat once more. I heard the air hissing and then sucking. The monotonous hum, ticking, and beeps of the monitors comforted me; they meant she was still here. The air tube was gone now and she breathed on her own. I inhaled and exhaled every breath with her. Keep breathing, Mareek. Breathe. Breathe.   

The others filed back in around us. Her father found the monitors too distracting, so a nurse turned them off. The screens that exhibited Marika’s life in glowing green turned dark. I felt for her pulse the way I learned as a lifeguard. Still strong.

You’re still breathing. Marika breathed seconds long enough for me to imagine her never stopping, long enough to imagine a chorus of nurses singing “mistake” and “miracle.”

How long can you keep breathing? Sweet breaths. Shallow breaths. She would not last long now.
You’re still here. I’m here. I need to focus, wake up. Watch. The now I know will be different on the other side of a blink.

Her mouth opened and took in no air this time. It closed and opened and hesitated. Her lips gently shut and opened and shut. And opened. Gently. Slowly.

Rest, Mareek. My Mareek, it’s okay. Her mouth was suspended open.
Rest. I love you. I had only her pulse. Pulse, no breathing. She was really going.

You are so beautiful. Pulse slowed.
Here. Still here. She was still here.

Here. Still.

Here.

Still.

 

Gone?

All gone?

 

Gone.

The clock said 12:28. I wanted the nurses to notice. It was 12:28 and Marika was gone.

I held her hand and stared: Lavender lined eyelids. Rosebud lips. The tiny spot that had been on her left chin forever. And I kept checking in with the clock, watching time fall away. March 4, 2011, 12:28 pm vanished. Just dropped off the planet. Overtaken by 12:29, and then 12:30. Wishing the whole world would end, I watched as the part of me that could sing and fly disappeared into nowhere. I waited. Like time might suddenly rewind. But wherever Marika was, her body was empty. She’d abandoned it. Some essence, some energy, was no longer there. This was not her. This was just her house. Her beautiful house with its scuffed walls and once-bright windows through which once emanated sweet songs. And sometimes thunder.

I hope there was light, Mareek. I hope you saw light. 

Please, whoever or whatever you are out there—God? —please don’t deprive her of the light.

 

 

REPLY TO ROBIN

Duetting: Memoir 31

 

Duetting: Memoir 31 Robin Botie of Ithaca, New York, photoshops an old picture of her father and children to illustrate a story about fathers and daughters.

 

On our first night home after weeks in the hospital, Marika could hardly walk. So I settled her into the guestroom downstairs near my bedroom and left her with a commode, a walker, and a Harpo Marx-type bicycle horn.
“Mom, I’m not using that thing,” she said in her whisper of a voice, her throat still sore from the breathing tube.
“If you use the commode by the bed, you won’t have to call, but the horn’s there in case you want help getting to the bathroom,” I told her, not sure which of the three items she was referring to.

“Okay. You can go now,” she snarled, as I lingered in the doorway, knowing how desperately she wanted to be independent of me. Knowing she probably would not call. Then, in the early hours of the morning, I woke to a crash. Running from my room, I found her face down, flat on the floor, in a puddle of urine, unable to get up, tooth in lip, blood, tears. She had tried to walk unaided, and now she was on the floor. Bigger than I, and still bloated from all the IV hydration and steroids, I couldn’t lift her. There we were, stuck. Time to phone her father. I hated that I had to bother him again. I could just hear Laurie’s criticizing, “Robin, you have to stop calling him.” What did she know? Who else was going to help me get Marika off the floor at five in the morning? Marika would expect nothing else.

Her father had moved out of the house in 2002, when Marika was twelve. She adored him. But he could stir up even more of her anger than I did. He was clueless about her. Still, he loved her and tried to please her. He was clueless about me; but with me, he’d stopped trying long ago.

Story by Five-Year-Old Marika

Once there was a squirrel and a bunny that were friends.
They wanted to grow up and get married because they loved each other.
But how could they marry, they are both different animals?
But they loved each other so much that they grew up and got married anyways.
The End.

“Marika’s okay,” I blurted out to her father, first thing. “I’m sorry. She fell. I phoned the on-call doctors and they don’t think we need to go the hospital. I just can’t get her up off the floor,” I said. I wrapped blankets around her and we sat on the wet floor waiting for him.
“I lost my tooth,” she sobbed.
“It’s just chipped. The doc says we should call the dentist later this morning. I bet they can fix it easily. Maybe even today.” I tried to sound reassuring.

“Thanks for coming over. I’m so sorry,” I said, when her father arrived. I looked at him briefly to convince myself I’d once been married to him. For fifteen years. He was not happy about my summoning him so early but he gently picked Marika up and got her back into bed. I thought of my own father while he spent a few minutes with her. And then he let himself out of the house without a glance or word for me. I made another vow not to call or need anything from him ever again.                                      

In my father’s home, I was Daughter Number One. That just meant I’d been around the longest of the three sisters. Often, with no reference to my name at all, he introduced me as, “My Number One Daughter.” When I was with my father, I was a princess. I didn’t have to worry about anything. Money was his currency of love, and he was generous. He started college funds for both my kids when they were born, and happily managed the account during Marika’s one year of college. At almost ninety, he still gave us family vacations and plane tickets to visit him, and dinners out in fancy restaurants. Then, at the beginning of this nightmare summer of 2009, he was hospitalized. His disease, some mysterious ailment, took control of everything. If I hadn’t been in the hospital with Marika, I would have been in the hospital in Florida, with him.

In September, Laurie and I visited our father. In the middle of the night in Delray Beach Hospital’s Intensive Care Unit, we watched him sleep, hooked to machines and monitors, sensor pads pasted all over his worn sun-browned body. His glasses, dentures, and hearing aids lay on the bedside table. He was beyond fixing.

He woke up annoyed, tossing his head from side to side, No. It was not supposed to be like this. He had planned and prepaid for his trip out of this world. The bills had been paid and a large loose-leaf binder was filled with his living will, advance directives, insurance information, and paperwork on everything he owned, including a prepaid cremation. Squinting, he looked at Laurie, Daughter Number Two, The Doctor. The one he’d designated as his healthcare proxy.

“It’s time,” he said, from his hollow mouth half hidden under an oxygen mask, not blinking his black marble eyes that caught great glints of light from the humming overhead fixture. “You,” he said turning to me, in a voice with no life left in it, “go home and take care of Marika.”

Hours later, the nurses moved him downstairs to the Hospice Unit. They herded his trembling younger brother, his broken-hearted sister, his three very different daughters, and all the rest of his family down elevators and hallways, into an empty, sunny room. Where was he, what was taking so long? Was he scared, I wondered? After a while they wheeled him in, unconscious and finally freed from all the life-supporting paraphernalia. He lasted long enough for me to say, “Thank you for making my life so rich, Dad.” I wanted the last words he heard to be “thank you.” I watched him take his last breath. Then he was gone. Dad. My first soldier.

After his funeral I went home to take care of Marika. And I made a promise to be his devoted Number One Daughter forever.

 

 

 

REPLY TO ROBIN

Taking Lives

Robin Botie of Ithac, New York, photoshops a zinnia to make a heavenly bed for the millipedes she deprived of life. Life is precious.Over the last four days I mercilessly snuffed out hundreds of little lives. Millipede lives.
Fleeing harsh conditions in their natural environment, thousands of millipedes were crawling up and down the exterior of my house seeking refuge from the horrendous heat and drenching rains. They wormed their way inside to wander the more hospitable vast plains of my carpeted and tiled floors.

But I did not want millipedes in my house. Even though I knew they were just trying to survive. I have it good here: a fridge full-to-bursting, air-conditioning, Netflix, cozy furnishings…. Comfortably holed up in the house during the heat wave, I wasn’t eager to share, especially with creatures that had more legs than my dog or I. The arthropods managing to penetrate the sacred walls of my home found me standing guard with my Dust-Buster. The first day I sucked up over a hundred. As my almost-hourly dust-busting raids continued, I lost track of the count.

Days later, dreading emptying out the Dust-Buster, I knew I’d find maybe a thousand millipedes crammed into its dark bowels. Dead or still squirming. Small sparks of life languishing or extinguished by my own will. I put the recharging Dust-Buster out in the mudroom where I wouldn’t have to think about that.

But I did think. As one who watched my beloved daughter’s life slip away, as one who knows how fragile and fleeting life is, I hate the thought of taking lives, taking the life out of any living organism. And I had to wonder: who am I to condemn a whole population of these creatures? Do millipedes have hearts? Can they hear the roar of the approaching vacuum? What drives such a creature to survive? And what is it that gets me feeling so invaded and hell-bent on squashing all that out?

I went to photograph zinnias, and peeked into their wavy wormy-looking centers that I could photo-shop into heavenly beds for the poor creatures I deprived of life.

 

When is it okay to torture or take a life?

REPLY TO ROBIN

Continuing a Relationship After Death

Robin Botie of Ithaca, New York photoshops photos of her daughter to illustrate continuing bonds grief theory.“Become all the things you love about the one you lost.” This was a post that appeared on Facebook recently. Shortly after finding it, I discovered that one of my favorite authors, Alexandra Fuller, wrote a new memoir, Travel Light, Move Fast, that suggests the same idea. Due out in August, its description begins:

After her father’s sudden death, Alexandra Fuller realizes that if she is going to weather this loss, she will need to become the parts of him she misses most.

You may be wondering, how does one ‘become the parts of’ someone else? This is something I’ve been practicing ever since my daughter Marika died eight years ago. Broken and miserable, first I wanted to die too. But I got distracted from that as I searched through all Marika’s belongings to learn everything I could about her. Then I made desperate efforts to honor, imitate, follow, dress like and eat like my daughter. She sang, so I sang. She wrote, so I began writing. She was courageous so I tried to be less fearful. She loved photography, so … Allowing my daughter to inspire me, I simply did what she did and learned to love what she loved, until I could barely remember my life as it was before.

Holding on to Marika and continuing a relationship after death was the only way I could survive. It has turned me into a better person. A happier person. Having incorporated different parts of her life into my own life, I carry her with me as I continue to participate in the world. This is one approach to the Continuing Bonds grief theory that is based on redefining or creating a new relationship with a deceased loved one rather than detaching oneself and moving on from the loss.

Sometimes I think of myself as the mother who swallowed her daughter , and then really became alive herself. I am here now because of Marika. When I found who she had been, I discovered who I could be.

 

Who would you die for? Who would you live for? Who would you change your entire self for, to keep alive and present in your life?

REPLY TO ROBIN

Talking About Death

Talking About Death Robin Botie of Ithaca, New York, photoshops a drawing found in her daughter Marika Warden's room. She pictures death with the face of her daughter so it isn't so scary and unapproachable.During our almost-three-year journey through the Wilds of Cancer, my daughter Marika and I never spoke about death or dying. To do so would have been to abandon all hope of ever being free of cancer. It’s like we made some sort of pact to pretend that everything would turn out all right. Our discussions focused only on coordinating the here-and-now. This way, we could stride always forward from setbacks and disappointing news.

So towards the end, as the palliative care team took over, hinting about unplugging the life support system, I made them whisper and would not mention aloud that Marika was not going to live. At that point, I was too crushed by the thought of losing her. I couldn’t utter the D-words. Death. Dying. Dead. They pulsed in my head as I tried to convince myself of the terrible new reality. Marika, mostly unconscious by then, only heard encouragement from me as she lay there, “You’re doing fine, keep it up.” I’m pretty sure she already knew she would not survive. Holding back the truth has haunted me ever since.

Eight years later, a good friend of mine is in the end stages of her cancer. In the strange circumstances of life, I have been granted an opportunity, a second chance, to do a better job of supporting a loved one through the process of dying. I’m still wondering why it is so difficult to talk about the tough stuff with the ones we care about. All the very difficult, very human things one needs to address at the end of a loved one’s life — like apologizing, forgiving, thanking, acknowledging love and appreciation, and saying goodbye — are easy to ignore.

Then came the day my friend announced she was stopping treatment and starting hospice care. It was time to step up beyond my comfort zone, to acknowledge her dying.

Now Death is turning into a third friend in our company. In my mind I picture Death as having the face of my daughter, so it isn’t as scary and unapproachable as it used to be. Most days she (Death) sits peacefully between me and my friend. Sometimes she hugs us close. Other times, like when I’m being less than thoughtful, she (Death) blatantly slams our heads together. I’m getting used to Death’s gaze waxing and waning with my friend’s energy.
“What will happen when you die?” I ask my friend, “I’m going to miss you. You know?”

 

How can we make death and dying easier to talk about with our loved ones?

 

 

REPLY TO ROBIN

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?

REPLY TO ROBIN