Tag Archives: cancer

Duetting: Memoir 6

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

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

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

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

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

 

 

 

 

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?

 

 

From a Bag Lady on Earth Day

In Photoshop, Robin Botie of Ithaca, New York, restores a picture of three-year-old Marika Warden as a garbage monster, wearing a dress made of plastic bags.“I don’t think I can do this.” I stood over my bin of plastic bags. “Earth Day’s coming, and I should be able to do this one simple thing for our planet,” I told myself. After decades of hoarding plastic shopping bags, I was considering eradicating them from my routine. But I kept coming back to all the things I do with these bags. Like carry gym-clothes and potluck dishes. Like use them for trashcan liners and dog-poo bags. They make great stuffing for stuffed-animal art projects. And long ago, inspired by Tom Knight’s song, The Garbage Monster, I even taped a bunch of plastic bags together into a dress for my then three-year-old daughter to wear in a costume contest where she won 3rd place.

Call me a Closet Bag Lady. I’m very attached to plastic bags. Even though they release toxic chemicals into the soil and oceans when discarded. Even though they’re produced from crude oil (a non-renewable resource), and their manufacturing process results in chemical pollution. And, while they are now made with a percentage of recycled material, they are not biodegradable so it’s nearly impossible to get rid of them. So animals find them and mistake the bags for food, and die choking and strangling on them. Nasty bags. For a long time I wondered if all the old plastic bags and bottles I found in my daughter’s room had something to do with her getting cancer. I kept saving bags anyway.

We’re destroying the planet,” friends wail. “Pollution, ozone depletion, carbon emissions, strip mining, fracking, … ocean acidification.” They write letters to congressmen and go to marches, keening like they’re grieving, “Habitat loss, deforestation, climate change…” laments that sound eerily similar to my bemoaning all the complications of my daughter’s disease. Seeing my planet in trouble reminds me of the helplessness I felt trying to hang onto Marika through the wilds of cancer. In the end, nothing could save her. But there ARE things we can do for Earth.

On Earth Day, all over the world people will be planting trees and picking up trash. Earthlings will take to the hills, to their gardens, to community Earth Day events. On any day, not just this holiday, we can recycle plastic bags and other recyclables, set up bird feeders, learn about the environment, investigate community composting, … to help make the planet a better place to live.

I don’t know for sure if I can really give up these darn bags. But the Earth is my home. Our home. So I hereby pledge: for the love of our beautiful planet, starting now, I will shop with reusable cloth bags. What one simple thing will you do?

 

 

Doing Something Dangerous

Robin Botie of Ithaca, New York, Photoshops her inherited dog Suki sinking in cracked concrete.In the first sentence of the book I was to choose a word or phrase from, it said, “… about to do something dangerous.” There were easier phrases to choose from beyond that first line, words that immediately painted pictures in my mind, words that would be less challenging to make six photographs of. But I kept coming back to that phrase. About to do something dangerous.

Maybe because I don’t ever do anything dangerous. Or, at least, not intentionally like some blog-sites that scream, “Do Something Dangerous Today.” I hardly ever take risks. After losing a daughter to leukemia, I know peril comes stalking a person sure enough without one’s flirting with it.

Trying to exercise some dangerous behavior to aid in executing the assignment, I squatted behind my camera at the bottom of the college’s huge staircase. Then I walked the halls looking only through my viewfinder, purposefully knocking into students I didn’t know and snapping their pictures.

Over the week, to complete the assignment, I considered what dangerous things I’d done in the past. Like walking alone in the city at night, exposing myself on social media, swimming by myself in strange waters, advertising on Craig’s List to rent my guest room, taking a ride from a bartender I didn’t know in Australia, getting my pilot license, … trusting another human being, getting romantically involved. Earthquakes and scorpions are dangerous, although I’d experienced neither. Rabid raccoons, jellyfish, high cliffs, losing control, … I had experienced. Menacing claws, lightning, lighting a match, and ground breaking beneath my feet are dangers I am wary of. And cancer.

Doing something dangerous has adverse consequences. Like the time I hiked in a slippery streambed, I fell and broke my wrist. When I carried a heavy bag of cat-poop I fell into my front door and broke my nose. Why would I want to do something dangerous?

Early in the week, Suki, the dog I inherited from my daughter, stopped eating. I watched as Doc Orzeck poked around the lump on her throat.
“A fifty/fifty chance it’s cancer,” he said. I held Suki tight for days. We snuggled each night. When she started wagging her tail again, we went for a hike. I fell. I got up and we kept walking. The next days we hiked and walked and sat in the sun. Danger is everywhere. Living your life, or daring to love, or just walking, is doing something dangerous.

 

What dangerous thing have you done? And why?