Chapter 3 approaching fast
Hey folks,
Sorry I haven’t posted many blog entries lately. Kind of feel like what Jim has to say is far more important than anything I post on this blog. Feels kind of unnatural for me to be posting my “feelings” and such for all the world to see. I’m still more comfortable being a journalist, trying to stay out of the way of the stories I’m telling.
Anyway, Chapter 3 is tentatively scheduled to come out in the paper on Sunday. The scary thing? I’m not finished with it yet.
I’ll let you know if the run date changes. If you don’t hear from me, expect to see it Sunday. And let me know what you think.
Ken
Thinking about the past
I’ve been thinking about the past a lot lately.
Little things, mostly — playing Wiffleball in our sloping front yard, imagining the towering maple trees are outfielders and trying to avoid the poison ivy growing in the ditch; helping my brother rebuild an ancient flatbed trailer, shirtless in the summer heat; trying to chop ashes drifting from the burn barrel out of the air as if I was Luke Skywalker wielding a lightsaber.
I remember the smell of Lake Erie and the feel of the mist blowing off of it, moist and pleasant and alive. The extended family would get together there each summer for a fish fry, the kids tiptoeing across the sunbaked sand toward the water’s edge, watermelon juice drying on their faces. We’d go there, too, on the 4th of July. We’d lie on our backs on the steep slope rising up from the beach and watch the skyrockets explode above us, the light reflecting on the water below.
We were little, and the world was big, and death was a word with little meaning.
Now, somehow, we’re big. The world seems smaller. And death is all around.
It’s not just Jim or my brother’s adopted daughter or the almost daily e-mails informing me that relatives of people I work with have died. It’s realizing that my elder siblings are nearly as old now as my father was when he died, and it’s thinking about my mother’s memoir, which one of my sisters compiled and recently mailed to me. I haven’t seen the memoir yet, but it’s got me remembering pictures of my Mom from when she was young and beautiful. The photos are faded black and whites, curled at the edges, and even when I was a child, they seemed old-fashioned.
We’re like that now, my sibs and me. We’ve become boring grown-ups, not running and playing but sitting together in crowded rooms talking about people and times long past. Our parents are gone. We have jobs and responsibilities. All that innocence that infused even the most boring of days with a sense of possibility has dwindled away.
I think of this especially when I talk to LeAnn and Jim’s children, Maddye and Ford. I’m in the midst of writing Chapter 3 of this series, which focuses largely on the kids. And time and again, I find myself comparing my childhood to theirs. For more than half of his life, Ford has shared a home with cancer. Even when Jim didn’t have it, the word was there, hanging over the family like the sword of Damocles. Ford barely remembers a time before cancer.
And Maddye. When I was 17, there was little room for anyone in my life except me. Selfish and childish, I regarded my parents as providers and inconveniences, people controlling my life with rules I didn’t like. Although my dad died just two years later, when I was 19, I rarely regarded him as mortal before then.
Ford and Maddye have always known their father can be hurt.
I wonder sometimes if they have Wiffleball or lakeshore memories — or if their childhoods were so colored by cancer that careless innocence was denied them.
And I wonder — all the time, it seems — how my sibs and I grew so old. In my head, we’re still young and vital. My brother has the trunk popped on his Chevy Nova, and Supertramp is blaring from the 8-track on his Jensen speakers. My oldest sister is there with her husband, hanging out on the porch swing and talking about “The Gong Show,” and my youngest sister has a Dorothy Hamill haircut and a t-shirt covered with a picture of a bassett hound. My middle sister is making a candle inside the kitchen, and I’m outside with a friend, swinging on a rope from one of those maple trees.
Summer was supposed to last forever.
Let’s go back to Blue Rock
In late November, John Clanton and I accompanied Jim and Ford to the hill country south of Austin, Texas, for a party celebrating the release of a literary journal called the Blue Rock Review. A few of Jim’s poems were published in the journal.
I wrote a brief blog entry about it awhile back. Today I was looking through my notes from that trip. I’d been saving the material in case I needed it for a story, but I don’t think I need it. So here it is, mildly edited, straight from my notes to you.
———————
We’re in a stone lodge-style compound in the hill country south of Austin. The place is owned by Billy and Dodee Crockett. Billy is a touring musician. He’s fit and bright-eyed with long dark hair and a crushing handshake. Dodee is some sort of banking or investment executive. She’s tiny with a shoulder-length brunette bob and prominent cheekbones; she bustles around, making sure everything’s in order, while Billy stays out of the way.
The compound includes the main lodge, the Quiet House (a separate guest house) and various outbuildings, all of a type. The main lodge, where the Crocketts live, has a series of balconies and decks, an opulent professional recording studio and a performance hall. The lodge also has a tower overlooking a deep valley. The river ordinarily runs through the valley below, but it’s dry now, and the Blue Rock — a fairly massive bluish boulder in the midst of the river bed — sits there like a tiny island.
Jim is amazed by the silence outside the lodge. It is striking. There’s no noise but the faint whisper of wind.
Jim has been here before. Once, he stayed in a guest room. He looked out the window and saw a deer. He’s not a hunter, and he doesn’t like urban sprawl. We passed a fawn and a doe on our way in. “Some people would look at that and want to shoot it,” Jim said. “I don’t know. How could anyone want to do that?”
Jim is happy here, the happiest I’ve seen him (Ken’s note: Up to that point, anyway). His friends are here. They’re writers, poets, photographers, musicians and artists, and most of them recognize him at once. He gets to talk about his books with his community. People are interested in what he has to say.
The colors of the lodge are all comforting earthtones of gray, tan and brown. A sitting room is separated from the gourmet kitchen by three wooden steps and a row of bookshelves no more than four feet tall. One wall is dominated by a towering stone fireplace, flanked by wooden bookcases. Double glass doors lead out to a deck that extends the length of the lodge. Another high bookshelf, perhaps 10 feet tall, sits opposite the fireplace and just off-center. In front of it, two wooden tables have been pushed together into an L. Copies of the Blue Rock Review sit at the top of the L, stacks of them, and Jim’s books sit in three smaller piles nearby. Nathan Brown’s books sit beside his, and a row of CDs occupy the base of the L.
Nathan is Jim’s closest friend here. He and Jim participate together in poetry readings, here and elsewhere, and Jim’s admiration for his friend is apparent in the way his face lights up when he sees him. Nathan is a photographer as well as a poet. He’s here with his girlfriend, Ashley, and a child.
The bookshelves are packed with a variety of books, CDs, DVDs and knick-knacks. “Christian Theology” and “The Christian Theology Reader” share shelf space with a carriage clock and a few smaller timepieces. An assortment of Penguin trade paperbacks sit there, too, near an oversized shelf filled with art books. Other shelves hold books on astronomy, philosophy, history and more.
Christmas music plays from wall-mounted speakers, and stockings hang from the mantle.
At the top of the lodge’s tower is a room with 360-degree views of the hills, river, wildlife and scrub trees. There’s a comfy couch, a table with an ornate Scrabble set and a pair of binoculars mounted on a tall tripod. Jim’s eyes are drawn to a yellow house on the nearest hillside. It’s a sprawling place, certainly expensive, but unlike the other houses in the valley, its bright color erupts from the earthy landscape. Jim can’t quit looking at it. The house so bothers him that he once wrote a poem about it.
“It’s sad,” Jim says. “I don’t know what it says about me that I come out here and look out on all this beauty, and the first thing my eye goes to is that yellow house.” Even here, in what is to Jim an idyllic landscape, minor annoyances distract.
Blue Rock is an isolated place. Tiny roads wind through the countryside, and directions include instructions such as “turn at the Baptist church.”
Jim is hoping that he’ll be invited to spend the night here. It’s happened before, and he clearly wants to stay here again, but he won’t ask. Too impolite. It’s a measure, perhaps, of his desire to be liked, to leave people with a pleasant impression, that he won’t request something he very much wants even though this may be his last opportunity to get it.
About 3:30 p.m., after driving seven hours to get here, Jim learns that he has only four minutes to read his poetry. It’s the same amount of time Nathan and a female poet get, but it’s not nearly enough. Jim perches on a window seat near the double doors in the book room and leafs through his poetry books, muttering quietly to himself as he plucks yellow Post-It notes from pages and revises his planned reading list.
“Cut, cut, cut, cut, cut,” he says, smiling.
Jim is wearing jeans and the same multi-colored striped sweater he was wearing the day I met him. He’s very slight, like most people here. Few of them carry more than a couple extra pounds, and most are attractive and in their 30s or 40s. They talk about art and lake houses and wear carefully chosen casual shirts — most comfortably untucked — and jeans. The men have short hair, and most have glasses. The women have bob haircuts or longer hair pulled back from their faces. Everyone is well-scrubbed, and their casual looks are calculated and expensive.
They’re all aggressively friendly. They call the books “merch” and make bad word-nerd puns, like “Don’t be-merch your reputation.” Everyone seems to have a camera.
At 4:05 p.m., five minutes after the event’s scheduled start time, the doors open to paying guests. Dozens of people paid $15 a pop to gain entrance. Admission cost includes the readings and musical performances, a copy of the journal or a T-shirt, and snacks. There’s a problem with the audio mix, so instead of entering the performance room immediately, the attendees are diverted into the kitchen and book room, where they surround the “merch” tables. “Twelve of our artists are here tonight,” Dodee tells one. “They’ll sign books here later.”
The guests are almost exclusively white. Most are women 50 or older. They wear bright clothes — banana yellow pants, embroidered Asian vests, lime sweaters, gold shawls. Most wear jeans. One man has a quarter-sized peace sign hanging from a beaded necklace and is wearing blood-red athletic shoes, blue jeans, a gray longsleeved casual pullover and a black formal vest with a silk back. Another woman wears a black velvet longsleeved shirt, black fringed suede boots and tight leopard-print pants, all combined with a green fleece vest with three black bears printed on the back. Others are dressed formally, apparently regarding this as an event destination.
Jim moves among them with a smile on his face. No matter how much success he’s enjoyed as a father and professional, this is where he’s happy. This thing is his. He’ll share it with his family, with those who are watching, but it’s really something for him. He may only get four minutes in the spotlight, but they’re his four minutes. He’s already savoring them, even though the reading won’t be for another hour or so. At the same time, he seems nervous, standing a bit aloof from the crowd.
Earlier, he’d watched as Ford walked out onto the deck and down an uneven staircase to a platform further down the hill. “Ford said he’s going to go find someplace quiet and listen to his music,” Jim says. “He’s not really good at mingling yet. In fact, I think he’s bad at it.”
“I’m not so good at it, either,” I say.
Jim pauses. “I’ve gotten better,” he says. “I think.”
The performance begins. Billy Crockett welcomes people to the Blue Rock. “Somehow it worked out that I just started looking into the western sky about a week ago,” he says. “Have you seen those two bright things in the sky? That’s Jupiter and Venus. Venus is the headlight, and Jupiter is the bright planet, and they’ve been getting closer every evening. I looked it up on the Sky and Telescope website, and guess when they converge. Tonight. Isn’t that fantastic? We’ve got our own little convergence of folks here coming from far away, you know. Whatever orbit you’re in, you’ve found your way here.”
Joining Crockett on stage are Mac McAnally, an acclaimed country songwriter, and Jon Dee Graham, an Austin legend whose smoky voice rings of authenticity. They banter and play music. After awhile, they take a break, and when they return, Jim is called up on stage to read.
He sounds shaky at first. I’m worried that the star power in this room is going to crush him, that he won’t be able to compete with the sound system, the celebrity, the guitar trio. He’s just one guy with one voice.
But Jim wins them over. He tells them a little about his condition, leaving out the terminal part, and warms them up with three quick poems. One expresses Jim’s disdain for Southern rock music, which doesn’t seem calculated to endear him to this audience. Then he busts out his secret weapon, a poem called “On Remembering Poetry.” The poem endeavors to force people to remember it by insisting that they won’t. It’s filled with funny lines, and the audience responds perfectly, laughing at the appropriate moments and making Jim’s face light up like a beacon. He’s controlling this crowd, pulling their strings, making them dance to his tune, and by the time he reaches the end (”You won’t remember this poem. You won’t remember this poem. You won’t remember this poem. I’m not wearing any underwear. You won’t remember this poem.”), the audience is his. They rise up and give him a resounding standing ovation.
Ford is excited when it’s over. “They were playing some crazy country-type (music),” he says to his father, “and you said that stuff about Southern rock, and I thought, ‘Damn, Dad … they’re not gonna like that!”
“Well,” Jim says, “they’re not really doing Southern rock here.”
“I know, but it’s pretty close.”
“At least it wasn’t Lynyrd Skynyrd,” Jim says.
Ford’s reply is fervent: “Thank God!”
At the end of the night, as we’re getting ready to go eat Italian food with Nathan, Jim finds out that Jon Dee Graham loved “On Remembering Poetry” so much that he told Crockett he needs a copy of it. Jim is so flattered he doesn’t know what to do with himself. Graham didn’t bring any CDs to sell, but he has a few out in his vehicle. He gets one and trades it to Jim for a copy of Jim’s poetry book, “Antidotes & Home Remedies.”
Jim talks about Graham all the way to the restaurant. The Italian food is great. It’s a fitting ending to Jim’s amazing day.
Small world
One of Jim’s doctors at M.D. Anderson is Dr. Steven Curley. (He’s also the subject of one of Jim’s funnier poems.) Dr. Curley was working with a man named John Kanzius on a machine to fight cancer with radio waves. Kanzius, who died recently, was from Erie, PA, close to where I grew up.
Here’s a story from MSNBC about Kanzius’ death:
Kanzius remembered by friends, family
ERIE, PA: The man who gained world wide attention with his radio wave machine to fight cancer was remembered as a hero and man of vision. John Kanzius lived part time on Sanibel Island. But it was in his hometown of Erie, Pennsylvania that his friends and family said goodbye to him.
The crowded Pennsylvania church and emotional eulogy were proof that John Kanzius touched hundreds of people in his life.
“We will continue John’s work. His legacy will be intact. We will complete the work he has started and the vision that made this man so dear to all of us,” said friend and colleague Dr. Steven Curley.
But the man who was pioneering a possible cure for cancer could help millions more after his death.
“If a hero is measured by the number of lives touched, the number of people inspired, the number of people mentored and taught and who, because of him aspire to be better and do better, then John is a hero greater than any number of kings, presidents, warriors and professional athletes,” said son-in-law Todd Palmer.
Kanzius developed his radio-frequency technology in Southwest Florida and it’s described as one of the most significant breakthroughs in curing cancer – the very disease that claimed the doctor’s life.
“He never lost sight of the fact that it really was not about him, it was about the amount of human suffering in the world because of cancer,” said friend Sharon McDonald of the Regional Cancer Center.
McDonald says the humble doctor would be proud to see what his invention will lead to.
With human trials possible as early as this year, the Southwest Florida innovation could soon help patients worldwide.
“It will be known as the Kanzius Treatment and it will be known as the Kanzius Machine and like every other true inventor of our time, his legacy will live on for years to come,” said McDonald.
Ford Chastain, guitar hero
Spent some time with Ford last night. John Clanton and I wired him up with audio equipment and videotaped a lengthy interview on topics ranging from silly song lyrics to how hard it is to be 15 and facing the loss of your father.
One of the things that struck me was how Ford filled the silences between questions with music.
Throughout the interview, he held his acoustic guitar, hiding behind it as if it was a shield or a barrier, something between him and us. His fingers drifted across the strings even as he talked. A few times, John and I remained silent, watching and listening as he strummed songs by Nirvana and Queen. Some tunes were unfamiliar to us, perhaps new songs Ford was working on in front of us, but all sounded right. He played so softly that we had to be quiet, and each time I asked a new question, I felt a little guilty for interrupting his subdued performance.
He seemed older last night than at any other time throughout the months we’ve known him. Older, more mature, closer to that crossroads of childhood and adulthood than ever. He’s looking more like his father, his brown mane wild, his teeth (newly freed of braces) sparkling in an open smile.
He’s been through a lot, this kid. He can’t remember much before cancer.
Maybe that’s why his music is so mature. Maybe that’s why he suddenly seems grown-up. He has lived in the shadow of cancer most of his life.
But now, he said, he knows it’s real.
Tragic news from my brother
Tori is dying.
In the day since I wrote my last post, everything went south. Tori is a 4-year-old girl my brother, Ron, and his wife, Patty, went to China to adopt. When they got there, they found that her health was terrible. Tori was hospitalized with a massive infection, but after some early scares, doctors said there was a 70 percent she’d recover fully. She seemed to be improving, and everything looked good.
Until today.
Tori’s temperature skyrocketed. Her breathing became erratic. When Ron and Patty were summoned back to the hospital, the little girl — as tiny as a 2-year-old — was surrounded by a dozen doctors. Her kidneys were too badly damaged by the infection. She is on a ventilator and failing rapidly.
Today — a day after Tori looked at my brother’s wife and called her “Mama” — Ron and Patty had to relinguish parental rights to her. She is again a Chinese orphan, and due to visa problems, Ron and Patty won’t even be able to attend her funeral. They leave for Hong Kong tomorrow, then head back to the states, grieving, hurting and without the little girl they’ve already come to love.
I never met Tori. I never will.
I’m sorry for telling you about her in yesterday’s post. I wouldn’t have mentioned her if I’d thought this was going to happen. Just by coming to the “Life is real” site, you’re exposing yourself to some pretty tragic things. You don’t need my family’s sadness, too.
My brother’s China doll
Two weeks ago, my brother, Ron, and his wife, Patty, flew to China to pick up their new adopted daughter, Tori.
About 1 1/2 years ago, they adopted their first Chinese child, Lianne, who is now about 2 years old. Lianne is a happy, healthy little girl, and Ron and Patty’s three biological children have welcomed her into the family. Ron runs a Christian radio station and teaches college in Pennsylvania. Patty takes care of older folks at a nursing home. They’re great parents.
They knew that Tori would be a challenge, though. She has major problems with her hip and leg bones and will require extensive medical treatment. She is also small for her age. Although she’s more than 4 years old, she’s smaller than Lianne.
But Ron and Patty weren’t prepared for what happened when they got to China. Tori was ill. She had a fever for days, suffered diarrhea and was hooked up to IVs. She was too weak to stand. Her condition quickly worsened. She was admitted to a hospital with rapid breathing. A doctor suspected pneumonia, among other things. Ron and Patty returned to their hotel room, only to be summoned back to the hospital. Test results showed steeply escalating blood sugar levels and indicated that her kidneys were not functioning, and doctors said there was little they could do.
Word spread that Tori was dying. Ron and Patty were frantic. They’d only spent a few days with Tori, but they’d been building up to seeing her for months. They’d sent photographs of themselves to the orphanage so that she would know what they looked like and received photos in return. They’d talked about her, planned for her. They loved her.
Experienced Chinese doctors were called in. One looked over the test results and decided that the evidence was misleading. The failing kidneys, the raised blood sugar — they were caused by a virus that had invaded her system and caused widespread infection. Kill the virus, save the girl. A new treatment regimen began, and now Ron and Patty were told there was a 70 percent chance Tori would live.
My brother sent another update yesterday. In an e-mail, he said that Tori is slowly improving, although she is still weak. She seems to be on the mend. Several high-ranking hospital officials came to visit them, bringing a “get-well” floral arrangement. Later, they were interviewed by a member of the Chinese media, and they have been asked to participate in a press conference, at which they will read aloud a letter they were asked to write praising the hospital staff. (Seems a bit early for that to me, but I’m not the one in a foreign country.)
It’s been an ordeal for my brother’s family, and it isn’t over. Hopefully Tori will thrive and survive and be able to come to the United States soon. In the meantime, Ron and Patty are stuck in China far longer than they’d planned.
None of this has anything to do with Jim Chastain, of course, but it’s been a life-or-death human drama every bit as absorbing as his story — and one more personal to me.
Since he won’t tell you …
… I will.
Jim’s second poetry book, “Antidotes & Home Remedies,” is a finalist for a 2009 Oklahoma Book Award. The book, published last year, includes 60 poems, some of which were excerpted Sunday in “Life is real” Chapter Two.
Jim faces stiff competition in the poetry category. Two of the finalists are his close friends, Nathan Brown and Dorothy Alexander. Nathan, who performs with Jim at poetry readings, is a finalist for his book, “Two Tables Over.” Dorothy, who runs Village Books Press in Cheyenne, published their books, along with her own. She is a finalist for “Lessons from an Oklahoma Girlhood.”
You can read stories that Nathan and Dorothy told about Jim in Chapter Two.
Congratulations to all of the poetry finalists, including Carol Hamilton (”Shots On”) and Linda Hogan (”Round the Human Corners”). A full list of Oklahoma Book Award finalists is available at www.odl.state.ok.us/ocb/09final.htm. All five books are available at Full Circle Bookstore at 50 Penn Place in Oklahoma City.
Chapter 2 just went up
Chapter 2 of Jim’s story has just been posted on the “Life is real” main site.
This chapter takes a look at Jim’s life through his poetry and through the eyes of some of the people who know him the best. I think it’s pretty funny, at least in places, but two editors here cried a little when they read it. I think that’s a testament to how touching Jim’s life is and how easy it is to care about him and his family.
Let me know what you think.
Root of the problem
The tooth, like the rest of me, was about twice as big as it should’ve been.
I found that out yesterday, several hours after having oral surgery to remove an impacted wisdom tooth on the lower left side of my jaw. The operation went well, I’m told, although my mouth didn’t stop filling with blood for about 21 hours. Haven’t been able to sleep, either. Or eat. Hurts a ton, too, especially when I swallow or take a sip of … well, anything. Milkshakes, Vitamin Water, regular water, salt water (to rinse the wound), etc., it doesn’t matter. It all hurts.
But everything went well. That’s what the surgeon said when he called to check on me about 8 p.m. last night. “That was a difficult tooth to remove,” he said. “It was huge. Ordinarily, wisdom teeth only have two roots. Yours had four or five. Was it four? I think it was five.”
Five roots. Two and a half times as many as it should’ve had.
The news immediately made me think of how limited our diagnostic tools are, even now, even in the 21st Century. A week before the operation, I’d had a full set of dental X-rays taken. The wisdom tooth was clearly visible and clearly wrong. It had grown in sideways, the crown nearly touching the roots of the rear molar. A pocket of infection surrounded the wisdom tooth, which pressed up against a bundle of nerves providing feeling to the lower left jaw and bottom lip. Not a bit of it was visible above the gumline, but there it was, plain as day, staring back at me from that X-ray.
And all I saw was two roots. See, the X-ray just showed a sideways view of the tooth. If we’d been able to see it from above or from different angles, we might’ve seen those extra roots spreading out from it and known in advance that this was going to be a tough tooth to extract.
It’s a totally different scenario, but I couldn’t help but think of Jim and that little bump on his arm that signalled the start of his problems. Some of the best doctors in the world worked on his arm, analyzing X-rays and CT scans and MRIs, and they still kept missing things. A malignant fibrous hystiocytoma is difficult to differentiate from surrounding tissue, and little bits of it must have kept spreading despite the surgeons’ best efforts to remove it all. For all our machines and tests and hospitals and medical schools, we’re still so uninformed about so many medical conditions and the best ways to treat them. I always wonder which commonplace medical practices today will later prove to have been needlessly detrimental and misguided, like the use of leeches, arsenic or mercury years ago.
It’s scary, and it’s maddening that for all the billions of dollars that have been thrown at cancer research, we still can’t eradicate it, at least not in a depressingly high number of cases. I get angry thinking that someone as young as Jim Chastain has suffered so much and will die because his own body has turned against him, and there’s little we can do to stop it.
That lump in Jim’s arm, like my tooth, had too many roots. He didn’t know any more than I did. But while I lost a useless chunk of calcium and enamel, Jim lost his arm … and far too soon, he’ll lose his life.
