Hola! glad to be back after last week, which was highly productive but pretty tough, mentally. More about that later. But first, an invitation:
I'm organizing a "field trip" from Madison to south Chicago on May 11 to attend services at Trinity UCC, where Rev. James Wright is now senior pastor. (See the March 31 post for a description of my trip to Trinity with my son.) Madison Jews and others upset by the anti-democratic "guilt by association" rhetoric that links Barack Obama through Rev. Wright to Louis Farrakhan, and who want to support the beleaguered congregation at Trinity, will be warmly welcomed at the 11 AM service.
We will head down to Chicago on Sunday morning and will return immediately after the service (which is about two hours long), stopping on the way back for lunch. We will travel by chartered bus; the cost, if the bus is full, will be $30 round-trip.
If you'd like to join us, or would like more information, please email me at jlstrass@wisc.edu. (Email will work much better than a comment to the blog, which won't give me your name or email address!) To reserve your space on the bus, send a check for $30, made out to Judith Strasser, at 511 Sheldon Street, Madison 53711. We can take 29 people. At this point, enough people have expressed interest to fill about half the bus-- but only a few have sealed their commitment with a $30 check! Still I expect the bus to fill, on a first-come, first-served basis. So if you want to join us (and I hope you will), send in your reservation money ASAP!
Now, about the past week. I was, as I mentioned last time, at Edenfred, an artists' retreat in Madison. Although I went home at night, I worked very intensely from about 9:30 to 5 every day, Monday through Friday, revising my manuscript, Facing Fear. The retreat was a wonderful gift; I was able to make it almost the entire way through the manuscript, and I now feel confident that I will have the revisions finished before May 25, when I go up to Door County (northern Wisconsin) to teach poetry for a week at The Clearing.
But the week was exhausting, and emotionally difficult. For one thing, it was a very monastic existence, and I'm no monk. For another, the subject matter of the book is occasionally difficult. For a third, when I took short breaks to read a novel, the book I chose (because it was related to the subject of the last chapter of the monograph) was Lovely Green Eyes, by Arnost Lustig. Lustig is a terrific writer. He's a Holocaust survivor, and his many books of fiction, including Lovely Green Eyes, are accounts of life at Theresienstadt, the concentration camp where he was imprisoned. Not exactly escapist literature.
Also last week, I learned that a friend and fellow poet had been suddenly taken ill and was scheduled for very serious surgery in May. She sent me an email telling me about this, and explaining that she and her husband would likely not be able to go to Chicago with us, which they had been planning. But now, of course, it's difficult, or impossible, for her to make plans. When I wrote back, explaining that I understood completely about the way illness interferes with planning for the future--it's one of the really big losses I've experienced--I suddenly realized that this was precisely what I'd been struggling with all last week, without being really aware of it. I have no idea whether I'll be around to see Facing Fear when it is finally published. Which, in a way, calls into question all the work I was doing--because if I'm not around to market the book, it's unlikely to get into many readers' hands. (Hardly any books, these days, get sold without considerable marketing effort by the author.) Of course, that's why I didn't allow myself to think about this problem while I was at Edenfred--it could easily have paralyzed me, and then I wouldn't have accomplished anything. But sometimes it takes a lot of effort not to think.
Another friend pointed out that nobody can really plan how the future will take shape; people just think they can. Which is, of course, true. But I'd argue that those of us who live with existential uncertainty because of illness are a different breed. It's difficult to sit quietly and listen while friends plan their biking trips for next week, or their vacations next fall, or reserve hotel rooms for conferences next February, when these are events that I would, under different circumstances, also be involved in.
Last summer, when I had to cancel my plan to go to a chamber music retreat, I fell into a pit of despair, thinking I'd never be able to plan anything again. Soon enough, I climbed out of the pit by reasoning that I could plan to do things so long as, if I had to cancel, I wouldn't inconvenience other people. So, for example, last fall I recruited my friend and co-editor Robin to accompany me (and if necessary, substitute for me completely) on a speaking engagement in late April. Honestly, I didn't think I'd be around to give that talk. But last Tuesday evening, Robin and I drove happily off to Brookfield (near Milwaukee) and spoke to a group at the Unitarian church. Sold books, too!
Similarly, I now expect to be able to teach (with Robin) the last week in May in Door County; something I really questioned last fall, when we signed up. So planning is possible, but difficult.
As is quite obvious when I look out the window. Here it is, April 28, and it's snowing. Great big flakes.
Monday, April 28, 2008
Monday, April 14, 2008
Crocuses and My Voice
Finally! The sun came out today, and the three or four clumps of purple crocuses in my front yard, which have been up for about a week, opened today. They're gorgeous. Ever since they started showing purple, they've been tightly wrapped around themselves--like me hugging myself, trying to keep warm. (We actually had some snow on the ground Saturday evening.) But as I say, the sun is out, and it's warming up quickly--they say tomorrow and Wednesday the highs will be well into the 60s. All I want to do is sit out on the front stoop and admire the flowers. Oh, and pump up my bike tires to see if I can manage 15 minutes on the trail near my house.
But what I'll spend time on, instead, is getting ready for a little in-town writing retreat next week, to work on revisions to the fear manuscript. I read through it last week (for the first time in two years), and was surprised and pleased to realize it won't take as much work as I--uh--feared. (To use the word loosely.) But I have a big pile of clippings and other material that's accumulated in the years since I finished the manuscript, and this week I plan to go through all that stuff and read it and sort it into folders related to each chapter. Next week, I'll just head every morning by 9 AM to Edenfred, the local artist's retreat where I've been generously offered a place to work, away from temptations like coffee with friends, the gym, email, and even this blog. So no post next Monday. Sorry, but if I don't completely clear the decks, I won't get the revisions done. Procrastination is my middle name. I should probably take solitaire off the laptop, too!
An email from an old friend who recently read my blog said it sounded like now I could talk, even on the phone. I realized that I haven't really made clear what's going on with my voice. It's true that the chemotherapy I've been on since last fall has improved matters significantly. My voice, as a number of people have commented in the past month or so, is much stronger. I attribute this (with no actual evidence) to the tumor on my vagus nerve letting loose its grip. I can breathe more easily, and speak more easily. But things are not perfect. I imagine the tumor is still there, hanging on a little. Or maybe it permanently damaged the nerve. The ENT doc I saw last fall said that sometimes paralyzed vocal folds recover completely; sometimes they don't, even if the cause (which could just be a virus, though obviously that wasn't my experience) disappears.
I can make myself heard fairly easily in relatively quiet places, but not in noisy restaurants or, say, on a busy street when a truck or bus is passing. I can have short phone conversations on good connections (usually land lines, but sometimes cell phones) with people who have no hearing problems (and you'd be surprised how many people, young and old, do--even if they're not aware of it). But I actually find even short conversations, like the one I'm about to make to schedule an oil change for my car, tiring. And the long, lovely conversations I used to have with friends and family are still quite impossible. I can speak in public with a microphone, but again, it's tiring, and I still need to share the podium with others, like my friend and co-editor Robin, who will come with me in the next couple of weeks when I have been asked to give two out-of-town talks about our retirement poems anthology.
What makes speaking tiring, I think, is partly psychological (will I make myself understood?) and partly physical. I just don't have enough breath to sustain a long sentence. I speak in phrases. I would like very much to be able to sing, for example, but when I tried it in the car a couple of days ago, I could only get out a word or two before I had to stop for breath. It's this limited aerobic capacity, also, which affects how much physical activity I can do. I'm much, much better than I was last fall, when I could only walk about a quarter of a city block before stopping, gasping to catch my breath. But on Friday night, when a friend and I parked and then walked a block uphill to a theater, I was very slow. Level is good--Robin and I walk for 45 minutes or an hour in the mall, and I don't gasp at all. Uphill is problematic. But I'm working on it. And I realize that if I were not working out several times a week, walking and going to strength training and spinning classes at the gym, I wouldn't be doing as well as I am.
And now, with the sun and the warmth, the crocuses and I have the whole outdoors to explore, at last!
Remember--no new blog post next Monday, but you can use the time to read old posts and post your own comments! And I'll see you back here on April 28. Cheers!
But what I'll spend time on, instead, is getting ready for a little in-town writing retreat next week, to work on revisions to the fear manuscript. I read through it last week (for the first time in two years), and was surprised and pleased to realize it won't take as much work as I--uh--feared. (To use the word loosely.) But I have a big pile of clippings and other material that's accumulated in the years since I finished the manuscript, and this week I plan to go through all that stuff and read it and sort it into folders related to each chapter. Next week, I'll just head every morning by 9 AM to Edenfred, the local artist's retreat where I've been generously offered a place to work, away from temptations like coffee with friends, the gym, email, and even this blog. So no post next Monday. Sorry, but if I don't completely clear the decks, I won't get the revisions done. Procrastination is my middle name. I should probably take solitaire off the laptop, too!
An email from an old friend who recently read my blog said it sounded like now I could talk, even on the phone. I realized that I haven't really made clear what's going on with my voice. It's true that the chemotherapy I've been on since last fall has improved matters significantly. My voice, as a number of people have commented in the past month or so, is much stronger. I attribute this (with no actual evidence) to the tumor on my vagus nerve letting loose its grip. I can breathe more easily, and speak more easily. But things are not perfect. I imagine the tumor is still there, hanging on a little. Or maybe it permanently damaged the nerve. The ENT doc I saw last fall said that sometimes paralyzed vocal folds recover completely; sometimes they don't, even if the cause (which could just be a virus, though obviously that wasn't my experience) disappears.
I can make myself heard fairly easily in relatively quiet places, but not in noisy restaurants or, say, on a busy street when a truck or bus is passing. I can have short phone conversations on good connections (usually land lines, but sometimes cell phones) with people who have no hearing problems (and you'd be surprised how many people, young and old, do--even if they're not aware of it). But I actually find even short conversations, like the one I'm about to make to schedule an oil change for my car, tiring. And the long, lovely conversations I used to have with friends and family are still quite impossible. I can speak in public with a microphone, but again, it's tiring, and I still need to share the podium with others, like my friend and co-editor Robin, who will come with me in the next couple of weeks when I have been asked to give two out-of-town talks about our retirement poems anthology.
What makes speaking tiring, I think, is partly psychological (will I make myself understood?) and partly physical. I just don't have enough breath to sustain a long sentence. I speak in phrases. I would like very much to be able to sing, for example, but when I tried it in the car a couple of days ago, I could only get out a word or two before I had to stop for breath. It's this limited aerobic capacity, also, which affects how much physical activity I can do. I'm much, much better than I was last fall, when I could only walk about a quarter of a city block before stopping, gasping to catch my breath. But on Friday night, when a friend and I parked and then walked a block uphill to a theater, I was very slow. Level is good--Robin and I walk for 45 minutes or an hour in the mall, and I don't gasp at all. Uphill is problematic. But I'm working on it. And I realize that if I were not working out several times a week, walking and going to strength training and spinning classes at the gym, I wouldn't be doing as well as I am.
And now, with the sun and the warmth, the crocuses and I have the whole outdoors to explore, at last!
Remember--no new blog post next Monday, but you can use the time to read old posts and post your own comments! And I'll see you back here on April 28. Cheers!
Monday, April 7, 2008
It's Spring....
...and in Madison that means that there are promising days, and not-so-promising. The piles of filthy snow are (mostly, but not completely) gone; the street-cleaning machines seem to be getting a lot of the sand and salt out of the gutters; people are raking their lawns, which are ever-so-slightly less brown; the temperature went into the 60s over the weekend... and today it is again cold and windy and gray.
It's sort of like life. (Heck, it is life.) I had my CT scan on Friday, and saw Dr. Holen, who reported that the tumors are smaller, and some of them are no longer visible! Hooray! But I also had chemo on Friday, and the after-effects laid me low for pretty much the entire weekend. It occurs to me that I try very hard to put on the best possible face, in this blog, and when I see and speak with friends and family, and for myself, too (in fact, mostly for myself)-- and a lot of people, as a result, think I'm "courageous" (which I'm not) and (probably) also insanely perky.
So here are a few sentences describing the downside, aka this past weekend. I felt fluish most of the time--nauseous, a little feverish, tired. Pretty much all I did on Saturday was sleep and put one load of laundry in the washer. Sunday was a little better: two more loads of laundry, and tidying the kitchen. Naps. Virtually the entire Sunday Times. A couple of chapters of Drew Gilpin Faust's history of how the Civil War changed Americans' understanding of death, This Republic of Suffering. It was beautiful outside, and I really wanted to take a walk, but I couldn't motivate myself to open the door until near sunset, when I saw my neighbors, who had brought over a piece of cake a couple of days earlier, walking past the house. I opened the door to return the plate. That was the extent of my "walk." I had a brief conversation with Kim (the neighbor); she was the only person I talked to the entire weekend, except for a couple of brief phone conversations with my friend Helen. Helen and I hoped to get together, but she's an MRI tech and was on call all weekend; worked all day Saturday and until 3 AM Sunday morning, and then went back to the hospital to work some more late Sunday morning. So getting together was out of the question.
I felt physically cruddy, and extremely sorry for myself.
Today is much better. I worked out at the gym this morning; I feel good; I'm getting some work done. Filed my income taxes, for example. Wrote this entry. Am about to read another chapter of the fear manuscript. And... there are purple crocuses blooming in my front yard!
Up, down, up. It's spring.
It's sort of like life. (Heck, it is life.) I had my CT scan on Friday, and saw Dr. Holen, who reported that the tumors are smaller, and some of them are no longer visible! Hooray! But I also had chemo on Friday, and the after-effects laid me low for pretty much the entire weekend. It occurs to me that I try very hard to put on the best possible face, in this blog, and when I see and speak with friends and family, and for myself, too (in fact, mostly for myself)-- and a lot of people, as a result, think I'm "courageous" (which I'm not) and (probably) also insanely perky.
So here are a few sentences describing the downside, aka this past weekend. I felt fluish most of the time--nauseous, a little feverish, tired. Pretty much all I did on Saturday was sleep and put one load of laundry in the washer. Sunday was a little better: two more loads of laundry, and tidying the kitchen. Naps. Virtually the entire Sunday Times. A couple of chapters of Drew Gilpin Faust's history of how the Civil War changed Americans' understanding of death, This Republic of Suffering. It was beautiful outside, and I really wanted to take a walk, but I couldn't motivate myself to open the door until near sunset, when I saw my neighbors, who had brought over a piece of cake a couple of days earlier, walking past the house. I opened the door to return the plate. That was the extent of my "walk." I had a brief conversation with Kim (the neighbor); she was the only person I talked to the entire weekend, except for a couple of brief phone conversations with my friend Helen. Helen and I hoped to get together, but she's an MRI tech and was on call all weekend; worked all day Saturday and until 3 AM Sunday morning, and then went back to the hospital to work some more late Sunday morning. So getting together was out of the question.
I felt physically cruddy, and extremely sorry for myself.
Today is much better. I worked out at the gym this morning; I feel good; I'm getting some work done. Filed my income taxes, for example. Wrote this entry. Am about to read another chapter of the fear manuscript. And... there are purple crocuses blooming in my front yard!
Up, down, up. It's spring.
Thursday, April 3, 2008
Monday, March 31, 2008
Chicago: "Carousel," Church, Courage
This past weekend, Jed and I went to Chicago. The idea for the trip was his. The evening before Easter Sunday, he said he had a "wild and crazy" idea. "How'd you like to go to church tomorrow?"
"Not at all," I said.
His idea, as it turned out, was to go to services at Trinity United Church of Christ in south Chicago, the church Barack Obama sometimes attends, where Rev. Jeremiah Wright is now senior pastor. I said I had other plans for Easter Sunday (going to a movie with a friend), but I thought it would be fun to go to Chicago, and interesting to attend a service at Trinity.
So Saturday afternoon we headed south; met my writing friend Anne-Marie for a wonderful dinner at Topalabampo; went to a good, somewhat minimalist revival of the 1946 musical, "Carousel," at the University of Chicago's Court Theater. I was surprised by how many words of those old songs I knew. (I'd had the same experience earlier in the month at a revue of Irving Berlin songs. I think it has to do with growing up in the 1950s, when all that music was on the radio, and also with music classes in elementary school, when we sang lots of songs, many either popular or patriotic.)
Of course, the most moving of the "Carousel" songs, especially for me, is "When You Walk Through a Storm." And that's really the theme of the show (it having been written just at the end of WWII): "When you walk through a storm/hold your head up high/And don't be afraid of the dark./At the end of the road is a golden sky/and the sweet silver song of a lark//Walk on, walk on, with hope in your heart/and you'll never walk alone...."
What was interesting, was that this was also one of the themes of Sunday morning's service at Trinity, which has certainly been at the center of a storm recently. (As we were entering the church, a woman looked at us and said, "It's so nice to finally be going to church without all those TV cameras!") I had thought of our visit as similar to the visits I used to make to churches of various denominations when I was in high school, with others in the American Friends Service Committee youth program: something interesting to do. But it was immediately obvious that we--and other visitors--were really there as supporters of a beleaguered congregation, and we were very warmly welcomed.
The service was joyous, full of music and choreographed dancing by the "dance ministry" group of young people. Yesterday happened to be Youth Sunday; the youth choir sang, many members wearing really colorful African dress; and much of the service was led by young people. A high school senior, Anita Pennington, gave the sermon, which was about "persistence and consistence" in action, faith, and prayer. She was a powerful speaker, especially when she was talking about being persistent and consistent in "fighting for justice and fighting for our rights." She talked about the way Martin Luther King continued his pursuit of racial equality and justice even when his life was threatened, but she also referred to the inspiring persistence and consistency of King's widow, the widow of Malcolm X, and the mother of murdered 14-year-old Emmett Till in working for civil rights even after their devastating losses. The implication was clear: Trinity's members must continue on their path despite the storm of publicity and attacks on Rev. Wright, and the (politically necessary) less-than-fervid endorsement of Wright by Barack Obama. I'm not sure anyone at the church mentioned the word "courage," but it was really a service devoted to courage and hope. I think there must have been a thousand or more people in attendance--every seat in every pew was filled, and there were people standing along the back wall, as well as people in an overflow room somewhere, watching on video--and for sure, all those people were walking through the storm with their heads held high. They are black, and they are proud: of Jeremiah Wright, of their church, and of themselves.
The church bulletin included a fascinating and well-written defense of Wright by Tim Wise, a white man, the author of a memoir, White Like Me, and "among the most respected anti-racist writers and educators in the US." You can read the essay, "Of National Lies and Racial Amnesia: Jeremiah Wright, Barack Obama, and the Audacity of Truth," on Wise's web site: www.timwise.org. Just click on the essays archive.
On other subjects: next Monday, I'll give you a report on the CT scan I get this Friday. And I promise those who've asked that I will put up some pictures of the calligraphed tunic (see the last post, if you don't know what this is) as soon as I get a chance. Also--to those of you who do comment and wonder why I haven't responded: I don't get the email addresses of commenters. So if you want a response, please, please, send me an email with your address! But don't stop commenting! Thanks...
"Not at all," I said.
His idea, as it turned out, was to go to services at Trinity United Church of Christ in south Chicago, the church Barack Obama sometimes attends, where Rev. Jeremiah Wright is now senior pastor. I said I had other plans for Easter Sunday (going to a movie with a friend), but I thought it would be fun to go to Chicago, and interesting to attend a service at Trinity.
So Saturday afternoon we headed south; met my writing friend Anne-Marie for a wonderful dinner at Topalabampo; went to a good, somewhat minimalist revival of the 1946 musical, "Carousel," at the University of Chicago's Court Theater. I was surprised by how many words of those old songs I knew. (I'd had the same experience earlier in the month at a revue of Irving Berlin songs. I think it has to do with growing up in the 1950s, when all that music was on the radio, and also with music classes in elementary school, when we sang lots of songs, many either popular or patriotic.)
Of course, the most moving of the "Carousel" songs, especially for me, is "When You Walk Through a Storm." And that's really the theme of the show (it having been written just at the end of WWII): "When you walk through a storm/hold your head up high/And don't be afraid of the dark./At the end of the road is a golden sky/and the sweet silver song of a lark//Walk on, walk on, with hope in your heart/and you'll never walk alone...."
What was interesting, was that this was also one of the themes of Sunday morning's service at Trinity, which has certainly been at the center of a storm recently. (As we were entering the church, a woman looked at us and said, "It's so nice to finally be going to church without all those TV cameras!") I had thought of our visit as similar to the visits I used to make to churches of various denominations when I was in high school, with others in the American Friends Service Committee youth program: something interesting to do. But it was immediately obvious that we--and other visitors--were really there as supporters of a beleaguered congregation, and we were very warmly welcomed.
The service was joyous, full of music and choreographed dancing by the "dance ministry" group of young people. Yesterday happened to be Youth Sunday; the youth choir sang, many members wearing really colorful African dress; and much of the service was led by young people. A high school senior, Anita Pennington, gave the sermon, which was about "persistence and consistence" in action, faith, and prayer. She was a powerful speaker, especially when she was talking about being persistent and consistent in "fighting for justice and fighting for our rights." She talked about the way Martin Luther King continued his pursuit of racial equality and justice even when his life was threatened, but she also referred to the inspiring persistence and consistency of King's widow, the widow of Malcolm X, and the mother of murdered 14-year-old Emmett Till in working for civil rights even after their devastating losses. The implication was clear: Trinity's members must continue on their path despite the storm of publicity and attacks on Rev. Wright, and the (politically necessary) less-than-fervid endorsement of Wright by Barack Obama. I'm not sure anyone at the church mentioned the word "courage," but it was really a service devoted to courage and hope. I think there must have been a thousand or more people in attendance--every seat in every pew was filled, and there were people standing along the back wall, as well as people in an overflow room somewhere, watching on video--and for sure, all those people were walking through the storm with their heads held high. They are black, and they are proud: of Jeremiah Wright, of their church, and of themselves.
The church bulletin included a fascinating and well-written defense of Wright by Tim Wise, a white man, the author of a memoir, White Like Me, and "among the most respected anti-racist writers and educators in the US." You can read the essay, "Of National Lies and Racial Amnesia: Jeremiah Wright, Barack Obama, and the Audacity of Truth," on Wise's web site: www.timwise.org. Just click on the essays archive.
On other subjects: next Monday, I'll give you a report on the CT scan I get this Friday. And I promise those who've asked that I will put up some pictures of the calligraphed tunic (see the last post, if you don't know what this is) as soon as I get a chance. Also--to those of you who do comment and wonder why I haven't responded: I don't get the email addresses of commenters. So if you want a response, please, please, send me an email with your address! But don't stop commenting! Thanks...
Monday, March 24, 2008
New Art
First, a correction. Several people have noted that a couple of weeks ago I wrote that my "next" CT scan would be March 21. That was a mistake. It's Friday, April 4, and I will report the results in my post the following Monday, April 7.
And now about that art! My living room has a new piece, a beautifully calligraphed tunic, conceived and executed by my college friend, Chris Emerson. Chris (with assistance from another college friend, Deborah Young) emailed a bunch of family and friends, asking them to contribute words for the project. Chris chose the words she wanted to write--they include "grasshopper" (a family joke), "Judy" (written upside down, so I know who I am, if I'm wearing the tunic), "cousin," "antelope" (my totem animal), and quite a lot more. And then she wrote them, artfully dispersed, on the unbleached cotton tunic.
I imagined the tunic displayed on a dressmaker's dummy (also known as a "dress form") and last week I found one on the web and ordered it. It arrived on Thursday, and Jed (who arrived for another visit Friday morning) hauled the big box inside and helped me set up the dummy, which is surprisingly elegant. Now clothed in the tunic, it stands in front of the fireplace (which is never used), ready for viewing. I plan to have a viewing party in the relatively near future for the contributors-of-words, but anyone who'd like to see it can just come by! It's really wonderful, and very meaningful, and I'm both touched and delighted to have received this gift.
In other "art" news: the manuscript I wrote while I was on chemo three years ago during the first attempt to treat my stomach cancer has been accepted for publication! Borderland Books, an imprint distributed and marketed by University of Wisconsin Press, will bring out the book, tentatively titled Facing Fear, at a date yet to be determined. First I have some revisions to do--and since it's been two years since I finished the manuscript, and I haven't read it since then, I don't have the slightest idea, yet, what will be involved in the revision.
I decided to write a book about fear right after the 2004 Presidential election. I was thinking about a new project, and I decided that if Kerry won, I could try to revise the very bad draft of a novel I'd written the previous year. But if Bush won, I was going to find a way to write about the long-term consequences of the political manipulation of fear. I'd been thinking about this since 1986, when a right-wing nut murdered my college friend Chuck Goldmark, his wife, and two young sons. The murderer apparently confused Chuck, a liberal attorney, with his father, a respected Washington State legislator who had been red-baited and voted out of the legislature during the McCarthy era. In a sense, I believe, Joseph McCarthy and the politics of fear were responsible for these deaths.
I went to Seattle to do research for the book in January 2005, coincidentally the month my cancer was diagnosed. The book quickly morphed into a much larger meditation on fear--where it comes from, and how to cope with it. Even as I was writing, I realized that I was trying to get a grip on my own fears of cancer and death. And when I finished the manuscript, I knew that in some ways it didn't matter whether it was published: I had written it for myself, and it had served a really important purpose, teaching me how to live my life with joy and hope, despite a truly awful diagnosis.
Still, as you blog-readers might have noticed, I do want other people to read what I write! So I'm absolutely delighted that the book will actually see the light of day. Borderland publishes gorgeous books, and I'll also put at least part of the text on the web, to try to maximize readership. Keep reading the blog, and you'll be among the first to hear when Facing Fear is available.
But that won't be for a while. First--those revisions!
And now about that art! My living room has a new piece, a beautifully calligraphed tunic, conceived and executed by my college friend, Chris Emerson. Chris (with assistance from another college friend, Deborah Young) emailed a bunch of family and friends, asking them to contribute words for the project. Chris chose the words she wanted to write--they include "grasshopper" (a family joke), "Judy" (written upside down, so I know who I am, if I'm wearing the tunic), "cousin," "antelope" (my totem animal), and quite a lot more. And then she wrote them, artfully dispersed, on the unbleached cotton tunic.
I imagined the tunic displayed on a dressmaker's dummy (also known as a "dress form") and last week I found one on the web and ordered it. It arrived on Thursday, and Jed (who arrived for another visit Friday morning) hauled the big box inside and helped me set up the dummy, which is surprisingly elegant. Now clothed in the tunic, it stands in front of the fireplace (which is never used), ready for viewing. I plan to have a viewing party in the relatively near future for the contributors-of-words, but anyone who'd like to see it can just come by! It's really wonderful, and very meaningful, and I'm both touched and delighted to have received this gift.
In other "art" news: the manuscript I wrote while I was on chemo three years ago during the first attempt to treat my stomach cancer has been accepted for publication! Borderland Books, an imprint distributed and marketed by University of Wisconsin Press, will bring out the book, tentatively titled Facing Fear, at a date yet to be determined. First I have some revisions to do--and since it's been two years since I finished the manuscript, and I haven't read it since then, I don't have the slightest idea, yet, what will be involved in the revision.
I decided to write a book about fear right after the 2004 Presidential election. I was thinking about a new project, and I decided that if Kerry won, I could try to revise the very bad draft of a novel I'd written the previous year. But if Bush won, I was going to find a way to write about the long-term consequences of the political manipulation of fear. I'd been thinking about this since 1986, when a right-wing nut murdered my college friend Chuck Goldmark, his wife, and two young sons. The murderer apparently confused Chuck, a liberal attorney, with his father, a respected Washington State legislator who had been red-baited and voted out of the legislature during the McCarthy era. In a sense, I believe, Joseph McCarthy and the politics of fear were responsible for these deaths.
I went to Seattle to do research for the book in January 2005, coincidentally the month my cancer was diagnosed. The book quickly morphed into a much larger meditation on fear--where it comes from, and how to cope with it. Even as I was writing, I realized that I was trying to get a grip on my own fears of cancer and death. And when I finished the manuscript, I knew that in some ways it didn't matter whether it was published: I had written it for myself, and it had served a really important purpose, teaching me how to live my life with joy and hope, despite a truly awful diagnosis.
Still, as you blog-readers might have noticed, I do want other people to read what I write! So I'm absolutely delighted that the book will actually see the light of day. Borderland publishes gorgeous books, and I'll also put at least part of the text on the web, to try to maximize readership. Keep reading the blog, and you'll be among the first to hear when Facing Fear is available.
But that won't be for a while. First--those revisions!
Monday, March 17, 2008
Advocating for Single-Payer Insurance
Early last week, I happened to be driving into my garage, half-listening to WHA, our local public radio station, when Larry Meiller, host of one of the talk shows, announced his guest for the hour. It was Kyle Holen, my oncologist; they were going to talk about the relationship between drug companies and doctors. Of course, I was interested, and as soon as I got into the house, I turned the radio on.
Now, I don't discuss politics during my doctors' appointments. (How many people do?) So I was more than mildly surprised, when a caller asked Dr. Holen why drugs are so expensive, and he replied, "Because in this country, unlike Canada, there are no cost controls." He'd just explained that oxalyplatin, the drug I happen to be on, costs $14,000 a month. I already knew this (as I mentioned in an earlier blog post), but what I didn't know is that oxalyplatin is, at least for Dr. Holen, the drug of first choice for colon cancer patients. There are oodles more cases of colon cancer than stomach cancer in the United States, and $14,000/month treatments for all of those patients must be a hefty contribution to the overall cost of health care, or at least of cancer care.
Dr. Holen went on to explain that in countries with single-payer health care systems, the single payer--that is, the government--is able to use its buying power to negotiate drug prices with the drug companies. Here, however, there are so many clinics, pharmacies, and insurance companies that no one has the power to negotiate prices--and the difficulty of getting all these players to work together and coordinate some sort of price negotiation is pretty much insurmountable.
I would have been thrilled to hear any doctor say this on public radio, but I was particularly pleased that it was my doctor advocating a single-payer health care system. I already liked the guy--he has, after all, kept me alive for three years--but this was extraordinary. A doctor who not only has good (by my standards) politics, but is willing to go public with his opinions!
And then someone else called in to ask if it was true that doctors get all sorts of freebies from drug sales reps. Yes, Dr. Holen said, although he added that he was careful not to accept so much as a pencil from a drug company. He made it clear that even though many doctors insist that free trips and free lunches don't influence their prescription practices, this was unlikely. Why would drug companies spend many millions on this sales technique, if it was ineffective? Dr. Holen described a clinic (outside Madison) where he sees patients once a month or so. At this clinic, lunch is provided daily by drug companies! On the days he's there, however, the other staff has agreed to have a potluck. "I like to think that some day they'll decide to have potlucks even when I'm not there," he said.
As a follow-up, a listener called in to suggest that people might be interested in looking at a website: www.nofreelunch.org. I hadn't heard of the organization, which is focused on breaking physicians' "drug company dependence" by providing arguments and evidence for the link between freebies (including free drug samples) and prescription practices. But Dr. Holen had, and said he contributed to the organization; and then he suggested people might also like to look at the site for Physicians for a National Health Program (www.pnhp.org). PNHP advocates for a universal, single-payer health care system.
These are both great sites. And if you're in Wisconsin, you might want to check out the site of the Coalition for Wisconsin Health, www.WisconsinHealth.org, an organization for which I volunteer. CWH is an affiliate of PNHP; its long-term goal is a single-payer system, but the coalition of over 60 health and social justice organizations understands that this goal may have to be achieved through small, shorter-term, steps, and it has been a strong advocate for the Healthy Wisconsin plan presented by Democrats in the state legislature in the past year.
CWH is also beginning a new state-wide project, Share Your Story. We're hoping that people with horror stories about health insurance, and also with good stories about the benefits of government programs like Badger Care (in Wisconsin) and Medicaid, will let us know that they're willing to take their stories public through the media. We'll interview these people, get their stories, and create a data base that can be accessed by reporters state-wide who are looking for real people with a personal interest in the health care policy debate. If you happen to know of Wisconsin residents with stories to tell, let me know, and I'll pass the information along!
And I really encourage all you readers to comment on, or ask questions about, the economics and politics of single-payer health insurance.
Now, I don't discuss politics during my doctors' appointments. (How many people do?) So I was more than mildly surprised, when a caller asked Dr. Holen why drugs are so expensive, and he replied, "Because in this country, unlike Canada, there are no cost controls." He'd just explained that oxalyplatin, the drug I happen to be on, costs $14,000 a month. I already knew this (as I mentioned in an earlier blog post), but what I didn't know is that oxalyplatin is, at least for Dr. Holen, the drug of first choice for colon cancer patients. There are oodles more cases of colon cancer than stomach cancer in the United States, and $14,000/month treatments for all of those patients must be a hefty contribution to the overall cost of health care, or at least of cancer care.
Dr. Holen went on to explain that in countries with single-payer health care systems, the single payer--that is, the government--is able to use its buying power to negotiate drug prices with the drug companies. Here, however, there are so many clinics, pharmacies, and insurance companies that no one has the power to negotiate prices--and the difficulty of getting all these players to work together and coordinate some sort of price negotiation is pretty much insurmountable.
I would have been thrilled to hear any doctor say this on public radio, but I was particularly pleased that it was my doctor advocating a single-payer health care system. I already liked the guy--he has, after all, kept me alive for three years--but this was extraordinary. A doctor who not only has good (by my standards) politics, but is willing to go public with his opinions!
And then someone else called in to ask if it was true that doctors get all sorts of freebies from drug sales reps. Yes, Dr. Holen said, although he added that he was careful not to accept so much as a pencil from a drug company. He made it clear that even though many doctors insist that free trips and free lunches don't influence their prescription practices, this was unlikely. Why would drug companies spend many millions on this sales technique, if it was ineffective? Dr. Holen described a clinic (outside Madison) where he sees patients once a month or so. At this clinic, lunch is provided daily by drug companies! On the days he's there, however, the other staff has agreed to have a potluck. "I like to think that some day they'll decide to have potlucks even when I'm not there," he said.
As a follow-up, a listener called in to suggest that people might be interested in looking at a website: www.nofreelunch.org. I hadn't heard of the organization, which is focused on breaking physicians' "drug company dependence" by providing arguments and evidence for the link between freebies (including free drug samples) and prescription practices. But Dr. Holen had, and said he contributed to the organization; and then he suggested people might also like to look at the site for Physicians for a National Health Program (www.pnhp.org). PNHP advocates for a universal, single-payer health care system.
These are both great sites. And if you're in Wisconsin, you might want to check out the site of the Coalition for Wisconsin Health, www.WisconsinHealth.org, an organization for which I volunteer. CWH is an affiliate of PNHP; its long-term goal is a single-payer system, but the coalition of over 60 health and social justice organizations understands that this goal may have to be achieved through small, shorter-term, steps, and it has been a strong advocate for the Healthy Wisconsin plan presented by Democrats in the state legislature in the past year.
CWH is also beginning a new state-wide project, Share Your Story. We're hoping that people with horror stories about health insurance, and also with good stories about the benefits of government programs like Badger Care (in Wisconsin) and Medicaid, will let us know that they're willing to take their stories public through the media. We'll interview these people, get their stories, and create a data base that can be accessed by reporters state-wide who are looking for real people with a personal interest in the health care policy debate. If you happen to know of Wisconsin residents with stories to tell, let me know, and I'll pass the information along!
And I really encourage all you readers to comment on, or ask questions about, the economics and politics of single-payer health insurance.
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