I Want to Live

Robin Botie of Ithaca, New York photoshops her old heating system as she puts in new heat pumps and hopes to live to be 100.At some point it becomes apparent that no one is going to be able to fix you, fix what’s wrong with you. Nothing lasts forever, my father used to say. Including health and youth. And life.

I always said I wanted to live to be a hundred. Why wouldn’t anyone want to last a whole century, I used to wonder? That was before I started noticing friends and family coping with chronic pain. It was before losing a daughter to cancer. Before I knew about Alzheimer’s and dementia. Before a friend was reported to have howled in the emergency room, “Kill me now.” This was before my own body began deteriorating with age.

I love living. When it comes right down to it, I would sooner give up my independence, my house, my limbs, my eyesight, wine and magnificent food, … before giving up my life. Even though my daughter died. Even though I often feel unnecessary and unneeded. Even though I feel depressed just thinking of the day I’m told I am beyond fixing, I want to live.

This line of thought consumed me weeks ago as the twenty-year-old heating system in my house started to die. Nothing’s wrong with the boiler, my plumber had said. But meanwhile, the loud grinding noises and stinking were keeping me awake at night. And it was expensive to run. That couldn’t be fixed. So I shut it off and began the process of gutting the closet that contained the mess of old pipes and outdated parts. It made me think of outliving my own parts and becoming a useless, non-functioning nuisance. It brought up some of my greatest fears around dying: disappearing, losing myself, not mattering, and then being erased completely like I never existed. I killed the plumbing system anyway.

I could look at strawberry shortcake or anything and relate it to dying. But I stood mesmerized, elated, watching the shiny state-of-the-art heat-pump units being installed up and down the house, and forgot the old familiar plumbing system that was being removed. And now I’m calculating the lifespan of this new equipment, considering how long it will keep me warm, how many more decades I can keep this house, how many years I can keep living — until the time when I, too, can no longer be fixed.

 

Would you want to live to be one hundred? What do you fear about aging out and dying?

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Welcome to Cancer

Robin Botie of Ithaca, New York, in homage to Cindy Sherman, and inspired by a friend newly diagnosed with cancer, photoshops cancer as a cranky old aunt.Dear J.,

For days, in response to your request for cheerful cards, I’ve been wondering what I could possibly say to “cheer you up” as you embark on your affair with cancer. I call what happens after a diagnosis an ‘affair,’ even though most people call it a ‘journey,’ one’s ‘cancer journey.’ People typically fall or jump into an affair, while journeys are usually anticipated and planned for. Instead, you got swiftly swept away into strange territory. An unusual and engaging and possibly hazardous experience—that is an affair or possibly an adventure. I’m wishing you luck.

From my own past experience as a caregiver, I compare cancer to having a controlling, cantankerous old aunt move into the house. She disrupts all your routines and plans, demanding your attention constantly. She bullies you. Every time you wake she whacks you. Cancer. It’s a shaking-up, a re-thinking of everything you thought you knew and could depend on. It’s a whole new relationship. It is not a fight. The worst of it — the recovering from surgeries, reactions to treatments, and the times you just want to be knocked unconscious — I call the Wilds of Cancer. That’s when the old aunt goes on a rampage, callously gutting you of kidneys and lungs, tearing your world apart. She whips you. She invades your dreams and re-colors every waking moment. She keeps you humble, keeps you ever on the lookout for a respite, and then gets you dreading her return. But she does quiet down here and there, and that is when you can hear your own breath again, feel your heart still beating. That is when you find your whole world is amazingly rich. Even robbed of your energy and well-being, life appears to be beautiful.

I hope you find ways to make peace with cancer. Don’t take her aggressive advances too personally. So many people are living with cancer. Maybe the “cheering up” is in knowing you are not alone. And in learning you can do this — you can do a slow-dance with cancer. Each new morning is a gift. And she may just loosen her grip and ditch you one day, leaving you wiser and more grateful and more respectful of everything in the universe.

I hereby add my best cheer and encouragement to your community of support.

 

What do you say to a newly diagnosed cancer patient? What can you do to ‘cheer’ them up?

 

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Hugging. Learning How to Hug

Robin Botie, of Ithaca, New York, photoshops an old photo of a mother and baby daughter hugging.I’m still learning how to hug. Growing up in my family, except for the occasional outright throwing of ourselves at our rigid parents, hugs didn’t happen for us kids. We didn’t see our parents hug or kiss each other. As a child, I remember occasionally scrubbing red lipstick kisses from my cheeks. My mother sent me off to college with a quick dry peck on the forehead. But I cannot remember being hugged.

For decades I avoided hugs. They were uncomfortably close encounters that mostly made me cringe and feel ravaged for a torturously long time.

My sisters and I only began to hug each other once we became adults and left home. Maybe they, also, learned that hugs could take the place of words when there were no words. Like when my daughter died and my world stopped. Everyone hugged me. Those hugs may have been what brought me back to life.

Hugging is good for you. It says so all over the internet: Hugs reduce pain and stress, improve communication, and make you happier and healthier in general. So giving and receiving hugs has become one of my ongoing projects. I’ve worked hard to figure this hugging-thing out. Three of my most memorable hugs over time:

Decades ago, reuniting with an old friend, we hugged and our earrings got hooked together, prolonging the hug so that we were stuck together until someone could help unlock our ears.

Hugging my babies. Tightly, as I danced them around the house, reeling and swerving wildly to music. As they became toddlers they yanked away, to be free of my hold. That pretty much ended the hugging of them.

And finally, after the life-support had been removed from my almost-21-year-old daughter and she was declared dead, and everyone dispersed, I tried to gather what was left of her into my arms and hold on. But it was like hugging a toddler. She was already free from my holding.

Have you ever tried to hug a dead person? It takes at least two conscious beings to really hug. It has taken countless hugs to get to the point where I understand what it means to hold another. And last week, for the first time that I’m aware of, I flew, in joy, to hug a friend without even thinking of how to hug.

 

Now that I’m getting the hang of it, I wonder, is there any sort of etiquette for hugging?

 

 

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Coming Home or Going Home?

Robin Botie of Ithaca, New York, photoshops coming home versus going home to a predicted snowstorm.When my first flight, out of Fort Lauderdale, was announced delayed, I became obsessed: Would I be coming home that day? How could I possibly not be going home?

I spent so much time trying to figure out if I was coming or going home, I almost forgot how it had felt to come all the way from New York to my mother’s apartment in Florida and not see her. For four days, my sisters and I had removed the last of her belongings. When we left, even the white carpets had been scrubbed clean of any trace of her. One less place in the world to come home to.

As my first flight was finally landing, I got a text: the connecting flight to home had been cancelled. Agents at the American Airlines help-desk informed me it would be three days before a seat was available on a flight anywhere near my home. That’s when I really became unhinged. Directionless, I wandered Philadelphia Airport’s terminals among all the other untethered passengers scrambling to find their ways home. I phoned a sympathetic friend.

“Hop on a Greyhound,” she said. But there were no buses until the next day, and having already invested nine hours into journeying home, I balked at the thought of a long bus ride. I didn’t want to leave the airport. Yet, camping out an unknown number of days and nights on stand-by to fly would be too grueling. From her computer, my friend booked me a hotel room, downtown, near the Greyhound station.

Going home or coming home? Maybe the difference is between where your physical body is and where your heart is. Maybe it’s the direction you’re moving, in relation to home. Whatever, home seemed to disappear ever farther away as I hugged my suitcase in the taxi to town, and then lumbered down endless carpeted hallways to a room that would serve as home for the night. And going home early the next morning on that Greyhound, every mile of the 235 miles between Philadelphia and Ithaca, every little town we stopped in to let people off to their homes, every hour of the eight-hour ride was painted over with thoughts of what I was coming home to: my dog, my friends, my cozy bed, a snowstorm, the freezer filled with tamales, the horn that hadn’t been played in days….

“Let’s make a toast—To coming home,” friends said, over dinner that night. Sigh.

 

What’s the difference between going home and coming home? What is home anyway?

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A Good Death Story

Robin Botie of Ithaca, New York photographs sculptures to illustrate dying a good death.I want to hear the story of your mother’s death, a friend said. It startled me. No one had been bold enough to request anything like this from me before, and in all of my phone calls to the bereaved, I, myself, had only ever asked for the stories of the deceased one’s life.

But we need to hear more death stories. Maybe dying wouldn’t be so scary if we shared more good deaths. And in the end, all in all, my mother had managed to have a pretty good death.

On the weekend after one sister had visited, my other sister and I arrived clueless to our mother’s state of mind. Not answering phone calls or emails, two weeks earlier Mom had written on my blogsite that she wasn’t ready to die, don’t give up on her. A week later she reported on the blog that it was time. When we got to her apartment, she was teetering between lucidity and an ever-enveloping morphine fog. It was the beginning of the storm before the calm.

Is this it? Am I dying now? she begged of her aides, desperately searching their eyes.
No, not yet, we all told her. And tucked her snuggly into the new Sleep Number bed. All night long and into the next day, she groaned in an alien tongue. It sounds like you’re in pain, her aide said.
No pain, she responded. But then she’d tear herself from the bed, driven by some invisible force, sending the aides scrambling to avoid her falling.

I think I’m dying now, she whispered with eyes closed. Yes, I’m dying, she said, not moving. Even the aide was convinced my mother was willing her death to arrive in that instant. But Mom perked right up when asked to initial and sign paperwork for the traveling notary, and whenever she was served rum raisin ice cream. That was pretty much how the weekend went. In and out of this world.

Agitated and restless, in the middle of the night of the day her daughters said goodbye, my mother wanted to be moved to the couch she’d inherited from her boyfriend. Soft, cushy and low to the ground, it was the couch she never sat on because she knew she couldn’t get up out of it. But that was where she chose to sit at 2AM Monday. And soon the aide helped her to lie down there. Then, she finally went to sleep. And never woke up.

These sculptures are worth a lot of money, my mother had told me, way before she could consider dying. I photographed them partly to show her that Yes, I’m taking good care of them, Mom. Also, they kinda remind me of all of us on our own individual journeys through life and dying. What we bring to the ends of our lives. What we leave behind. The chaos and the calm.

Got any good death stories to share?

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Where’s My Grief?

Robin Botie of Ithaca, New York, photoshops an image of a dog figurine as she wonders where is grief.How’re you doing, people kept asking, cocking their heads and squinting at me, like they expected to find me keeled over, buckled up in pain since my mother died.

I’m good, I assured them. Actually, I was feeling like the Queen of Sheba, merrily doling out all my mother’s earthly belongings. The car, the beds, coffeemakers, the jewels…. Mom’s caregivers and cleaning lady and their families came by to help clear out her apartment. Take whatever you like, I proclaimed, Take it all before the Jiffy-Junk man gets it. The place was bustling. No time for grieving.

Years after my daughter died I thought I was an expert in grief. That sinking squeezed-flat feeling, the hanging heaviness, the painful emotional triggers…. You have to embrace the pain and let it consume you for as long as it takes, I’d tell bereaved friends. But now I was distracted by people and the long list of things to do. And I had just squirreled away my Mom’s huge hand-painted Italian bird-bowl I’d long coveted. Not to mention other, mostly practical (as opposed to sentimental) things of hers I’d chosen to keep for myself. I was feeling no pain.

Exhausted at the end of the Great Give-Away Day, I went to sleep on the inflatable airbed since I’d gifted away the couch I usually slept on. In the middle of the night I woke on the hard floor, the mattress deflated. Unable to fall back to sleep, I wandered the apartment. Oddly empty, I thought. Not the apartment. Oddly empty was how I felt, myself.

In the dark, the eyes of a flea-market figurine stared at me. It was a dog. A schnauzer. Mom had a thing for schnauzers. Salty. Cozy. Chuckie. OMG, how I loved those dogs. It still makes me cry to think of them. The schnauzer figurine sat on top of a pile of things for the Jiffy-Junk man. With cocked head, it eyed me pathetically, squinting like it was trying to reach through me, imploring me to rescue it.

Rushing out early to catch my plane the next morning, I left the schnauzer. But the expression on its plastic-resin face haunted me the whole trip home, and I knew I’d have to claim it when I returned for Jiffy-Junk Day.

Focus on Mom, I kept reminding myself all week, Mom’s not coming back. I was expecting—no, I was yearning—to be overcome by suffering and uncontrollable keening. I was ready to be consumed by pain. So…. ?!*}(<*! Where was my grief?

 

 

 

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