Awesome warnings: Braveness. Persistence. Facing your fears.
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My dad died in 2013. It was his birthday yesterday.
How It Went
It is Thursday and an oncologist whose last name is Snow has just told my father that he has a few weeks to live. Sometimes poets use snow to signify death. This seems appropriate, like all those poets were psychic somehow.
As I wander through the tiny patch of woods off the Glen Mary Road in Bar Harbor, I think that this is actually appropriate in a bad way though I’ve been trying to spin it into something poetic, something that makes sense.
The doctor’s name is Snow.
Snow.
A lone crow alights from one pine tree bough to another, leading me down the trail. There are superstitions about crows. One crow is meant to signify death.
“I already know,” I tell the bird as he lifts his shiny wings, “but thanks.”
And about five hours away from me and the crow, Doctor Snow leaves my dad’s hospital room and my sister hands my dad the hospital phone so that I can say hi.
“Carriekins,” he says to me and his voice is cheerful somehow.
“Hey Dad! I love you!” This is the only thing I can think to say. I try to make my voice cheerful, too, but it isn’t strong like pine boughs and it can’t hold up the weight of me or even a crow right now or even a dusting of snow.
I try again and manage to sound chipper. “I love you.”
“I love you, too,” he says. “How is your day going?”
The first thing he asks, moments after he finds out that he is about to die, is how my day is going. This is how my dad works. He asks people questions. He wants to know how they are doing, what they’ve done, what they think, why they think it. His favorite thing to say is, “I don’t know enough about you. What can you tell me?”
And I never know what to say. I never feel like I have anything to tell. He’s known me all my life. How can he not know enough?
“My day kind of stinks, Dad,” I tell him, stepping on a fallen pine cone. Crushing it will help to scatter its seed, make new pinecones, but I still feel badly about breaking its form. “I mean, it does stink because of what the doctor just said, but it’s good because I get to hear your voice and talk to you.”
It is the last time I have a real conversation with my dad.
The next day they fill him with morphine and move him to a hospice center. He can’t talk because of the drugs. That is Friday. On Saturday, he can only wheeze into the phone. I tell him he sounds like Darth Vader and that I will be there Monday after a wedding I have to go to and after I drop my daughter, Em, off at college.
He dies that night or really early Sunday morning right after the sunrise. He loves sunrises.
Doctor Snow had given him weeks. He lasts two days because of a fast moving, wildly spreading small cell cancer that has already officially claimed the area around one of his lungs.
Before we knew he had cancer, he said, “You know I would go down on my knees and kiss the ground and praise God if I could breathe again. Isn’t that something? Isn’t that something you’d never expect to hear from me?”
And it was.
My dad was a hobbit kind of man. He believed in breakfast and laughing. He believed in second breakfast and laughing even more. He believed in dancing and smiling and telling stories and listening and a third breakfast that included cake. He believed in life and people. He was capable of looking straight into someone’s soul and getting right to the core of what made them special and because he had that gift, he forgave everyone everything. He forgave people all the time and he loved them just as much as he did no matter what they put him through.
Backing Up Ten Days
Right after the Boston Marathon bombings, I am sitting in a Cambridge, Massachusetts restaurant with my daughter, Em. People are eating, but mostly everyone is craning their heads, watching the television screen that displays what little information exists about the attacks. My cell phone vibrates and I learn that my dad, who has gone into the hospital three days earlier because he couldn’t breath has tumors. They don’t know if the tumors are cancer. They just know they are there.
On the screen above my head are news people trying to make sense of a tragedy that I have just personally witnessed because I had been at the marathon. I don’t need the television to see the blood and the pain, the hope of people helping, the determination of doctors and civilians and paramedics and cops.
Tumors and Hate
People before me have compared hate to cancerous tumors, compared the way hate metastasizes and invades a society, taking it over the same way cancer takes over a body. It is not new to think about this, but I do. The hate isn’t in the restaurant this night though. In the restaurant, the patrons and servers are still trying to understand how things like bombs can happen in their city, trying to isolate the type of hate that this cancer was, trying to understand it.
Some things are hard to understand. You can label all different types of cancers (lymphoblastic, Kapoki sarcoma, fibrous histiocytoma, ovarian, oropharyngeal), and you can label all different kinds of hate (misogyny, domestic terrorism, international terrorism, fear, self-righteousness, homophobic, racist, religious, ethnic, sociopathic) but those labels are just labels, they don’t get at the core of the hate, the essential interwoven elements of it.
“Grandpa Barnard has some sort of tumors,” I tell Emily, “and fluid around his lung.”
“It is cancer?” she asks.
“They don’t know yet.”
It isn’t for another ten days that they tell him that it is definitely cancer, and a bad kind. In those ten days, I spew out a blog post about the goodness I saw at the marathon; I talk to librarians; I attend a wedding full of love. The doctors aren’t sure where the cancer originated. They just know that it is. My uncle who is in his late eighties immediately starts citing statistics about Raydon. My dad was a firefighter for decades, the volunteer kind. They didn’t have great personal protection equipment. He inhaled a lot of things.
My family has never been a family that has cancer. My uncle wants to find a reason. He wants to understand.
But we won’t ever understand exactly what made my dad’s body become cancerous or where that cancer first struck or even where else in his body that it is.
“There is no point in doing scans,” Dr. Snow says on this Thursday, my dad’s last Thursday. “The only point is that we have to keep him comfortable, manage his pain.”
And this is where cancer and violence part ways. Because as a society we always have to do the scans, always have to figure out where the hate started, what tools it uses to kill others, what elements it needs to thrive. Because as a society, we need to feel safe and we need to be a place where nobody wants to destroy innocent runners or spectators or children or each other. We have to be a place that understands hatred and actively works to try to stop it, to turn it into something good and peaceful.
When my dad finds out about the Boston Marathon he says, “Humans can be so horrible to each other, can’t they Carriekins?”
And I say that they could, but I add, remembering what I had seen at the marathon, “They can be good too, Dad.”
“Yes, they can.” He sighs. “I would have liked to been a locksmith. I would have liked to have a nice, simple job just helping people.”
“You helped people all the time, Dad,” I tell him. “You are a good, sweet man.”
“I wasn’t a great success.”
“Yes, you were. You were a success because you made people laugh,” I tell him. “You were a success because you try so hard every day to be good.”
And it is true. Even at the hospital as he is dying, he is flirting with nurses in a non-creepy way, complimenting their bright orange pants, asking them how they were.
Even when he finds out he has less than a month to live, he asks me, “How was your day?”
That is what good is. That is what gives me hope when cancer tries to infect our country or even our own souls with blame and anger and bigotry. People like my dad give me hope. It is the hobbits of the world, the ones who find the beauty in breakfast or a nurse’s fluorescent pants, who find the love inside a angry person’s heart, who find the kindness and joy and laughter inside a hospital room, these are the people who make our world good. We need more hobbits like my dad. He may have not have been a famous man or a ‘successful’ one, but he was good. Severely dyslexic, he never made it past second grade, always thought he was “stupid” especially compared to his parents and siblings and even me.
But he was the opposite of stupid. He was brilliant. He embodied empathy and kindness. He was unrelentingly good and I miss him. The world needs more Lew Barnards in it. I do, too.
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A week ago from Sunday, my friend Charlene died of pancreatic cancer.
That’s a hard sentence to write.
It’s even harder when I think of hanging out with Charlene this summer. A retired librarian, she worked at the campground we were staying at while we rented our house. Charlene made my introverted self feel safe and happy even when surrounded by camping extroverts. Whenever I saw her, I would smile. Charlene was like that. She calmed me.
One day we whispered over the counter in the campground office about my new neighbor’s shenanigans of the porn-rated kind, which weren’t a big deal except the noise. I wasn’t super excited about having to explain to the ten-year-old what the noises coming from the next tent over were about.
“They’re gone tomorrow,” Charlene assured me. “I promise. You can make it one more day, right?”
One more day.
Photo via Jack Frost via Ellsworth Rotary Club
“Whenever I’m having a hard time,” she added, “I tell myself, ‘Look at this beautiful sunrise. Look at this person I get to talk to. I’m lucky. I can do anything for one more day.”
When Charlene told me about her diagnosis the summer was over and we were all out of the campground and I wasn’t getting my almost daily dose of Charlene. All my internal organs seemed to drop six inches as I read her message. There was this hole inside of me that was sudden and huge and real.
It was October and she wrote,
Thanks for your faith in me but I’m afraid I’ve been handed one that may be too tough for me. I have been diagnosed with pancreatic cancer and the tumor seems to be growing quickly. I think I’m not beating this one. That’s ok too. Trying to stay ahead of the pain is hard.
I told her that she was amazing and strong and brilliant and how much I love her and she wrote:
I sure don’t feel strong right now.
And I thought, “Crap. Neither do I.”
But I wrote, “You are soul strong.”
That was true.
No matter what happened, Charlene was always soul strong.
Photo courtesy of Charlene’s Facebook via Timberland Acres
This past summer at the campground, Charlene wanted me to share a story I wrote about death and a camper’s wife, and how the campground is this beautiful place that inspires community no matter what, how it endures even as ownership, staff and campers change, about how the connections we create matter. I didn’t want to share the story too widely because I didn’t want to exploit the woman’s pain. Charlene respected that. Charlene respected a lot of things.
Charlene was special because she understood that the needs of individual people are greater than the needs of a company or of marketing. She was special because she believed in empathy, in story, and in the power of goodness.
She knew all about the power of goodness because my detail-oriented friend spent her life devoted to doing good.
Charlene was part of Rotary International and was constantly giving back to her community (local and international) by volunteering. Charlene was a champion of books and writers. She made me feel special even as I started to write. I believed in myself partly because Charlene believed in me. I started being a writer when Charlene was the director of the Ellsworth Public Library. She took this scared, socially anxious writer under her wing and held me close, celebrating every thing I did like she was the mom I never had.
My dog Sparty is a great judge of character and he would get so excited if Charlene drove by in the campground golf cart. He’d hop into the cart and try to ride around with her. He looked proud to know her.
I know how that felt.
This summer we talked about how neither of us have any depth perception because we don’t see out of our left eyes. We had no idea that we shared this issue and laughed about parking cars, driving, bumping into door frames, being miserable at any sport where things fly at you (tennis, softball, volleyball).
“This must be one of the zillion reasons I love you,” I said as we stood under a blue-blue sky beneath the boughs of pines as squirrels chittered away above us, talking too.
“That’s a reason why you love me?” She laughed. “I hope the other reasons are better.”
They were.
Charlene told me about a long-lost love that she reconnected with. She went completely out of her comfort zone to do that, to even tell me about it, but she looked so proud of being vulnerable and being brave.
“Life is too short to be afraid. I’m done being afraid,” she said.
“I am so in awe of you,” I told her.
“Ha!” She laughed. “I’m in awe of you.”
Campground lady friends picked her up. They all wore white slacks and nice shirts and were heading out on one of their weekly adventures, which was usually to shop or to go to a restaurant for lunch.
They looked so happy, so in-the-moment, so alive.
And I vowed that next summer at the campground that I would make a massive effort to visit with Charlene every single day she worked and I’d bring my dogs that she loved so much and learn as much as I could about this woman, this magnificent Rotarian, librarian, human and white-slacks-wearing friend.
She died five months later. It was right before Christmas. This summer never happened. But other summers have and I am so lucky. We are all so lucky.
She had travelled to Houston for special treatment, but her body was already breaking and instead she had emergency surgeries, increasing bills, and a lot of pain. Her local Rotary club had a fundraiser and I made a basket for an auction (for my Rotary club), but couldn’t go because I was teaching a three-hour class that day at the same time.
Even though Charlene was still in Texas, I felt like the worst friend because I couldn’t be at that fundraiser because I had responsibilities. Charlene, a Rotary secretary, a library director, understood about responsibilities though. She understood about so many things.
I am in awe of Charlene, but I am also in awe of you – all my friends who read this, who I get to connect to, and I am in awe of all you do and how hard you try and how much you hope and work for good. Let’s lift each other up and do this together, okay? In honor of Charlene and all we’ve lost.
The first time I blogged the first section of this post back in 2013, I checked with my dad to make sure he was okay with it. He was.
My dad is dead now and reposting this is hard, but also good. Because that’s how life can be – hard and good.
So lately, thanks to brilliant blog posts by writers like Jo Knowles and Tim Wynne Jones, I’ve been thinking a lot about what it means to love life and to really live it. Jo’s post ponders Maurice Sendak’s NPR interview where he implores people to live their lives, and the sadness and urgency that he has as he expresses that thought as he, himself, is in the last months of his own life.
And for me, that is even more poignant as I listened to my own father sob on the phone last Friday, lamenting a family member who is still alive with us, but whose personality has been twisted by drug use.
“Where is that person I used to know?” my dad asked. “Where is that person I was so proud of?”
I told him that the person is still there, buried beneath the drugs, that their soul is still a bright light underneath all the layers of drug dependence and anger and need.
But it made me wonder about how people can change for good or for bad, about how we are all a product of our choices and our intentions.
“Our family is shrinking,” my dad said, “and I am so alone. In the mornings, when it is bleak, I look out at the cold trees and I am so very lonely.”
I listed all the people my father has, all the people who love him. My sister and all her grown kids live near him. My brother, his son. My dad’s brother and his sister-in-law have him to dinner every single night. My dad has friends still alive that he has gone on grand adventures with, but the worry about his drug-addled relative has devastated him. All the good things don’t matter any more because he has chosen to only look at the horror of the present.
And that’s sad.
And it’s easy and normal to feel that way.
And I have felt this way too — times when I am impossibly sad even though I am one of the luckiest humans in the universe — times when I think that the days are too cold to leave the bed and walk the dogs and eat. But the thing is, you fight through them. It isn’t that life is a gift. It isn’t that life is a curse. It’s just that life is. It is. And we are meant to experience it and travel through it and we can choose to make that journey have meaning like poets do, like Jo does, like Tim does, or we can choose to just manage, to slug through. Our choices can change. Our intentions can change. Our purpose can change. It doesn’t matter. What matters is that we are meant to experience this life – this great big is — and how we do experience it is up to us.
And so in that phone call I had with my dad I told him, “I love you. What is happening to our relative is not your fault and not all your responsibility and whatever choices you make, you will make with love, and that is all that matters. What matters, Dad, is that you love, that you have always loved, and that you always will love with all your heart.”
He said with a shaking 83-year-old hobbit man voice, “I am such a coward. I am so scared. I am so scared for them.”*
But my little dad isn’t a coward. He faces his pain, his sorrow, his worries, his life head on. He touches the sad, hurt parts of his own soul and knows them. My dad doesn’t hide. He doesn’t pretend to be someone he isn’t.
“Being scared doesn’t make you a coward,” I tell him. “You have never run away from life, Dad. You will never run away, and that makes you one of the bravest men of all.”
*I changed the pronoun to ‘them’ because that makes it even more difficult to identify the person but also because them is a pretty cool pronoun.
And then less than four months after that post, I posted this:
It is Thursday and an oncologist whose last name is Snow has just told my father that he has a few weeks to live. Sometimes poets use snow to signify death. As I wander through the tiny patch of woods off the Glen Mary Road in Bar Harbor, I think that this is appropriate in a bad way. The doctor’s name is Snow. Snow. A lone crow alights from one pine tree bough to another, leading me down the trail. There are superstitions about crows. One crow is meant to signify death.
“I already know,” I tell the bird as he lifts his shiny wings, “but thanks.”
And about five hours away from me and the crow, Doctor Snow leaves my dad’s hospital room and my sister hands my dad the hospital phone so that I can say hi.
“Carriekins,” he says to me and his voice is cheerful somehow.
“Hey Dad! I love you!” This is the only thing I can think to say. I try to make my voice cheerful, too, but it isn’t strong like pine boughs and it can’t hold up the weight of me. I try again and manage to sound chipper. “I love you.”
“I love you, too,” he says. “How is your day going?”
The first thing he asks, moments after he finds out that he is about to die, is how my day is going. This is how my dad works. He asks people questions. He wants to know how they are doing, what they’ve done, what they think, why they think it. His favorite thing to say is, “I don’t know enough about you. What can you tell me?”
And I never know what to say. I never feel like I have anything to tell.
“My day kind of stinks, Dad,” I tell him, stepping on a fallen pine cone. Crushing it will help to scatter its seed, but I still feel badly about it somehow. “I mean, it does stink because of what the doctor just said, but it’s good because I get to hear your voice and talk to you.”
It is the last time I have a real conversation with my dad. The next day they fill him with morphine and move him to a hospice center. He can’t talk because of the drugs. That is Friday. On Saturday, he can only wheeze into the phone. I tell him he sounds like Darth Vader and that I will be there Monday after a wedding I have to go to and after I drop my daughter, Em, off at college.
He dies that night or really early Sunday morning right after the sunrise. He loves sunrises.
Doctor Snow had given him weeks. He lasts two days because of a fast moving, wildly spreading small cell cancer that has already officially claimed the area around one of his lungs.
Before we knew he had cancer he said, “You know I would go down on my knees and kiss the ground and praise God if I could breathe again. Isn’t that something? Isn’t that something you’d never expect to hear from me?”
And it was.
My dad was a hobbit kind of man. He believed in breakfast and laughing. He believed in second breakfast and laughing even more. He believed in dancing and smiling and telling stories and listening and a third breakfast that included cake. He believed in life and people. He was capable of looking straight into someone’s soul and getting right to the core of what made them special and because he had that gift, he forgave everyone everything. He forgave people all the time and he loved them just as much as he did no matter what they put him through.
Two weeks before he died
Right after the Boston Marathon bombings, I am sitting in a Cambridge, Massachusetts restaurant with my daughter, Em. People are eating, but mostly everyone is craning their heads, watching the television screen that displays what little information exists about the attacks. My cell phone vibrates and I learn that my dad, who has gone into the hospital three days earlier because he couldn’t breath has tumors. They don’t know if the tumors are cancer. They just know they are there.
On the screen above my head are news people trying to make sense of a tragedy that I have just personally witnessed because I had been at the marathon. I don’t need the television to see the blood and the pain, the hope of people helping, the determination of doctors and civilians and paramedics and cops.
Tumors.
People before me have compared hate to cancerous tumors, compared the way hate metastasizes and invades a society, taking it over the same way cancer takes over a body. It is not new to think about this, but I do. The hate isn’t in the restaurant this night though. In the restaurant, the patrons and servers are still trying to understand how things like bombs can happen in their city, trying to isolate the type of hate that this cancer was, trying to understand it.
Some things are hard to understand. You can label all different types of cancers (lymphoblastic, Kapoki sarcoma, fibrous histiocytoma, ovarian, oropharyngeal), and you can label all different kinds of hate (misogyny, domestic terrorism, international terrorism, fear, self-righteousness, homophobic, racist, religious, ethnic, sociopathic) but those labels are just labels, they don’t get at the core of the hate, the essential interwoven elements of it.
“Grandpa Barnard has some sort of tumors,” I tell Emily, “and fluid around his lung.”
“It is cancer?” she asks.
“They don’t know yet.”
It isn’t for another ten days that they tell him that it is definitely cancer, and a bad kind. In those ten days, I spew out a blog post about the goodness I saw at the marathon, I talk to librarians, I attend a wedding full of love. The doctors aren’t sure where the cancer originated. They just know that it is. My uncle who is in his late eighties immediately starts citing statistics about Raydon. My family has never been a family that has cancer. He wants to find a reason. He wants to understand.
But we won’t ever understand exactly what made my dad’s body become cancerous or where that cancer first struck or even where else in his body that it is.
“There is no point in doing scans,” Dr. Snow says on this Thursday. “The only point is that we have to keep him comfortable, manage his pain.”
And this is where cancer and violence part ways. Because as a society we always have to do the scans, always have to figure out where the hate started, what tools it uses to kill others, what elements it needs to thrive. Because as a society, we need to feel safe and we need to be a place where nobody wants to destroy innocent runners or spectators or children. We have to be a place that understands hatred and actively works to try to stop it, to turn it into something good and peaceful.
When my dad finds out about the Boston Marathon he says, “Humans can be so horrible to each other, can’t they Carriekins?”
And I say that they could, but I add, remembering what I had seen at the Marathon, “They can be good too, Dad.”
“Yes, they can.” He sighs. “I would have liked to been a locksmith. I would have liked to have a nice, simple job helping people.”
“You helped people all the time, Dad,” I tell him. “You are a good, sweet man.”
“I wasn’t a great success.”
“Yes, you were. You were a success because you made people laugh,” I tell him. “You were a success because you try so hard every day to be good.”
And it is true. Even at the hospital he is flirting with nurses, complimenting their bright orange pants, asking them how their days are going.
Even when he finds out he has less than a month to live, he asks me, “How was your day?”
That is what good is. That is what gives me hope when cancer tries to infect our country or even our own souls with blame and anger and bigotry. People like my dad give me hope. It is the hobbits of the world, the ones who find the beauty in breakfast or a nurse’s fluorescent pants, who find the love inside a angry person’s heart, who want to save those who hurt them, the ones who find the kindness and joy and laughter inside a hospital room, these are the people who make our world good. We need more hobbits like my dad. He may have not have been a famous man or a ‘successful’ one, but he was good. He was unrelentingly good and I will miss him.
I do miss him.
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BLOG BREAK – SORT OF
It’s a big holiday week here and so Carrie is going to be taking a bit of a blog break for the next two weeks. There will be a new podcast next Tuesday, but other than that? It’s a little time for Carrie’s brain to recharge and rest. So, she’ll be posting random blogs from her past. Thank you for understanding!
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MOE BERG
The Spy Who Played Baseball is a picture book biography about Moe Berg. And… there’s a movie out now about Moe Berg, a major league baseball player who became a spy. How cool is that?
It’s awesome and quirky and fun.
FLYING AND ENHANCED
Men in Black meet Buffy the Vampire Slayer? You know it. You can buy them hereor anywhere.
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