"I know this sounds crazy, but ever since yesterday on the road, I've been seeing this shape. Shaving cream, pillows...Dammit! I know this. I know what this is! This means something. This is important."
Doctors played your dosage like a card-trick.
Scrabbled down the hallways yelling "Yahtzee!"
One of the small pleasures about Vermont in the wintertime, if you're trying to get in shape, is the long hours spent running on a treadmill. Sure, it's tedious. But it's also at least sort of meditative and, for me, provides an opportunity to drown out the awful Quiet Riot and Guns n' Roses that they play at the gym with an iPod and some newfound music of my own.
Sometimes this means elaborate, embarrassing, time-consuming Rock and Roll Fantasies—the highschool talent show revenge fantasy, the peculiar dream of busking on a Montpelier street corner with my accordion and a handful of Billy Bragg songs. But also it means I have a chance to give a close listen to new musical discoveries and/or music that my kids would never abide on the stereo at home. One of these new pleasures, for me, is a Canadian band called The Weakerthans.
And, okay, they're somewhat derivative, musically, but they're also word-heavy, and playful and literate, which can distract from the hamster-wheel effect of treadmill running (and from the aforementioned embarrassing fantasy scenarios). There's the song inspired by a Martin Amis novel, the song that imagines a 20th century explorer dining with Michel Foucault ("I must say that in the right light you look like Shackleton"), and the plea from a cat to its owner:
Why don't you ever want to play? I'm tired of this piece of string.
You sleep as much as I do now, and you don't eat much of anything.
I don't know who you're talking to—I made a search through every room,
But all I found was dust that moved in shadows of the afternoon.
And listen, about those bitter songs you sing?
They're not helping anything;
They won't make you strong.
A wise cat, but even so, a bitter song can sometimes resonate a bit. And an (uncharacteristically) somber song called "(Hospital Vespers)" gets me thinking of the early days of Fergus' diagnosis, of the fear and helplessness of watching your little boy lie there in the hospital bed while you wait for the orderly to take him down for a bone marrow tap, or an infusion of toxic chemicals into his spine.
Doctors played your dosage like a card-trick.
Scrabbled down the hallways yelling "Yahtzee!"
I brought books on Hopper and the Arctic,
Something called "The Politics of Lonely,"
A toothbrush and a quick-pick with the plus.
You tried not to roll your sunken eyes, and
Said, "Hey can you help me, I can't reach it."
Pointed at the camera in the ceiling.
I climbed up, blocked it so they couldn't see.
Turned to find you out of bed, and kneeling.
Before the nurses came, took you away,
I stood there on a chair and watched you pray
Personal convictions aside, I'm not, as they say, a Prayin' Man. But strange situations can take you in strange directions. I've been thinking a lot lately about how parenthood, and uprooting, and homeschooling, and my child's leukemia have changed my life, and it seems busier and more fractured than ever. In fact, just this morning, Lauren said she felt like we have a dozen things all hanging by the barest of threads right now. She and I seem to talk most thoroughly by email, and the only time I have for inwardness are the times stolen away from my family—an hour at the gym, or an afternoon (so rare) climbing a mountain.
Last week Lauren sent me an article about a husband and wife who both initiated affairs while their young daughter struggled with a mysterious set of symptoms. Lauren wasn't trying to "tell me something" ominous with that article, but it resonated for us both nonetheless:
I think the hardest part of having a child with special issues is the need for comfort. Julie and I could do anything, face any tough issue that came up, if only we could escape that world every now and then. Perhaps we all need to have someone on the outside to make that escape with, someone who's not there with us.
To complicate our feeling of helplessness, we had no definitive answer to face, no medical diagnosis stating "This is what's wrong with your child, and here's what you need to accomplish in order to fix it." There were only unanswered questions and frustrations, and when we looked at each other, I guess what we saw was someone who didn't feel one bit of sympathy for the other. I'm in the same boat, we seemed to say. Don't look to me for any answers.
This feeling of giving nearly all that you have to give in order to keep your kid alive, to vouchsafe his journey back to health--this is the part that resonates. But if we can't turn to the closest of others for answers, for support and nourishment, what is the safe direction to turn? Outward or inward? And if it's inward, how do we carve out the quiet moment to delve into that inwardness?
These thoughts were with me this week when I encountered a radio interview between host Krista Tippett and Irish poet John O'Donohue on a show called "Speaking of Faith." And again, I find myself making connections—possibly spurious ones, I know—between what he says here and the pop songs and the articles, the themes that keep washing into my waking life. An excerpt:
John O'Donohue: You see, I think that one of the huge difficulties in modern life is the way time has become the enemy.
Krista Tippett: Time is a bully; we are captive to it.
JO: Totally. Seven out of every ten people who turn up in a doctor's surgery are suffering from something stress related. Now, there are big psychological tomes written on stress. But for me, philosophically, stress is a perverted relationship to time. So that rather than being a subject of your own time, you have become its target, and victim. And time has become routine. So that at the end of the day you probably haven't had a true moment for yourself, you know, to relax in, and just be. Because you know the way in this country there are all the different zones—I think there are these zones within us as well. There's surface time, which is really rapid-fire Ferrari time--
KT: --And over structured.
JO: Yeah, over structured-like, and stolen from you, thieved all the time. And then if you slip down…like Dan Siegel, my friend, has this lovely meditation, you know, you imagine the surface of the ocean is all restless, and then you slip down, deep below the surface, where it's still, and where things move slow. And what I love in this regard is my old friend, Meister Eckhart, the 14th century mystic--
KT: --Right. German mystic.
JO: German mystic. And one day I read in him, and he said, "There is a place in the soul—there's a place in the soul that neither time nor space, nor no created thing can touch." And I really thought that was amazing. And if you cash it out, what it means is, that your identity is not equivalent to your biography, and that there is a place in you where you have never been wounded, where there is still a sureness in you, where there is a seamlessness in you, and where there is a confidence and tranquility in you. And I think the intention of prayer, and spirituality, and love is now and again to visit that kind of inner sanctuary.
Where do these connections lead me? To prayer? I don't know. Maybe to difficulty--and the still, sure place on the other side of difficulty(?) Biography is not identity, but maybe it's the tool we use to make the journey from here to there.
--If that is not utter nonsense to say.
...Oh, you're very sweet;
Thank you for the flowers and the book by Derrida,
But I must be getting back to dear Antarctica.
Say, do you have a ship and a dozen able men that maybe you could lend me?
Oh Antarctica.
Audio of the John O'Donohue interview (MP3, 53 minutes). Mr. O'Donohue died in January of this year.
IF I SEE, HEAR, OR READ one more thing about breast cancer, I'm just gonna throw up," she said as we stood at the microwave in the visitors' lounge watching chicken reheat. It was late in the evening and quiet on the hospital's pediatric inpatient floor.
We were sharing a respite from our children's cancer treatments. Her son had osteosarcoma, a bone cancer. Evidence of his four-year battle included a missing leg and a shiny bald head, the result of surgery and chemotherapy to counter the cancer's every move.
My daughter had leukemia, a condition that had relapsed following a bone-marrow transplant. Bald too, she had difficulty walking, and had recently been informed that her treatment had failed and that she would not live to see the millennium.
If given a choice, parents would gladly choose for themselves to have cancer over their children. But cancer never gives them such a choice.
I've been thinking about the woman's words. The television and print-media blitz on breast and prostate cancer is a mixed blessing. The focus on detecting such cancers provides a needed community service to the extent it motivates individuals to contribute time and money to cancer organizations. Also, breast and prostate cancer are relatively common among adults. Over the last decade, for instance, the incidence of breast cancer ranged between 76 and 123 per 100,000 women. The mortality rate was 27 per 100,000.
But cancer is entangled in politics and corporate greed. Government agency budgeteers take advantage of politicians' pandering by spiking their proposals with much-needed requests for cancer research funds. Meanwhile, to boost profits, drug companies invest heavily in advertising and lobbying to influence the political funding process.
Like the mother of the boy with osteosarcoma, I do not appreciate this frenzy over adult cancers. I acknowledge bias, having recently lost a child to leukemia. Yet I wonder: To what extent does the emphasis on breast and prostate cancer hamper the detection and treatment of other cancers? Do the extra dollars going toward breast- and prostate-cancer research pull away dollars that might otherwise fund studies of other cancers?
The National Cancer Institute's proposed budget for the coming fiscal year indicates a clear emphasis on breast and prostate cancer. At the institute's Web site, I ran a word count on "breast" and "prostate" and got a large total. However, "child," "pediatric," "leukemia," or any other term connected to childhood cancer only sporadically showed up in the mammoth site.
The incidence of childhood cancer is 14.1 per 100,000. Although the mortality rate for children with cancer has decreased by 42 percent in the last two decades, cancer's incidence has increased 10 percent. For black children, the increase is 14 percent.
Particular childhood cancer rates have seen higher increases: soft tissue sarcoma and brain cancer, 25 percent; acute lymphoblastic leukemia, 20 percent. Though it appears that the incidence and mortality rates for childhood cancer are small next to cancers among adults, if analyzed in terms of lost years of life, childhood cancer is much more devastating to society.
The average age of mortality for adults with cancer is 50, which represents a loss of more than 20 years of life per adult. In contrast, a child who dies from cancer loses 60 to 65 years of life.
This incalculable loss, however, is not immutable if we understand that research on childhood cancer is often successfully applied to adult cancer. Cancer scientist John Lazslo calls childhood leukemia a "stalking horse for other cancers." When childhood leukemia is cured, he says, cures for the rest will soon follow.
The first cancer clinical trials involved children with leukemia. Children with cancer are usually otherwise healthy and can tolerate greater drug intensity than adults. Each child that has participated in a clinical trial to test a new treatment but succumbed to cancer has bestowed a precious gift--improved treatments--on those, including adults, later diagnosed with cancer.
Much of the early development of bone-marrow transplantation targeted children with immune-deficiency diseases and other causes of bone-marrow failure. Since then, both adults and children with leukemia and other cancers have received bone-marrow transplants.
Some important discoveries about the molecular biology of cancer have originated in pediatric studies. The study of the rare pediatric eye cancer retinoblastoma led to the landmark discovery of the first human cancer gene. The absence of this particular tumor-suppressor gene leads to several adult cancers--including prostate cancer.
The first applications of gene therapy in children with brain cancer and neuroblastoma, a cancer of the central nervous system, are under way at a children's hospital, and eventually will have adult applications.
Our daughter participated in the first comprehensive trial of an immunotoxin. The side effects from the experimental therapy were devastating, and the eventual result was not positive. But we know of several children who are alive today because of it. Treatments using immunotoxins will soon help adults with cancer and AIDS.
Children with cancer have given a tremendous gift to adults with cancer. Are we adults so generous?"
