Did I mention that the surgery on May 5 was an elective procedure, and that a swift recovery was predicted? In part because nobody expected him to get so sick, the past twenty-five days have been harrowing, and at many points we didn't expect him to live. My impression all along was that the man didn't want to die, but his body did, and the gap between the two was the location of the tragedy.
News from Byron in Denver:
When my mother & I arrived at the hospital today, my dad had a big surprise for us. He gestured for the nurse, who then came in and put a plug into his trach. He then spoke for the first time in something like 3 weeks. His first words were "Hi. How does this sound? Does this sound good? Boy, its good to talk to you........"
My mother and I both began to cry as he then exploded in a torrent of questions, comments and conversation. He talked and talked and talked.
He wanted to know how all of his friends were, about what had happened to him, what was going to happen next, how long his recovery would be, more about the staph infection, about the pneumonia, what about the white-blood cell count, what about the blood clots, why was he so weak, why were his muscles in such bad shape now, how long had he been in the induced coma, etc, etc, etc. He had so many things to say that it was sort of hard to keep up with him. He even tried to make a couple of phone calls.
The conversation turned very serious when he began asking tough questions about what had really happened. When it became clear to him that he'd almost died he said "Hey, don't bury me yet! I'm not ready to go! I've got stuff I want to do still. Oh my god! That's crazy! Oh my god! I just don't understand it, that's so weird! Am I going to be okay? I just don't understand all of this. How long is this going to take? Can I go home now? Oh my god! This could take all summer to recover from! This could take until Christmas! Oh my god!"
The mood lightened after a while and he made many jokes. He said he wanted a beer. He said he wanted to play indoor arena football. He thought that looked like a really fun game. He postulated that Willie Nelson wouldn't "put up with all of this". He told us a really funny tale about how the ambulance team that transported him yesterday couldn't find the hospital and had run out of oxygen by the time they did. He gave a long and hilarious narrative about how the different nurses in the ICU would pump him with various drugs to bring his vitals up and down: "......the nurse would come in and say 'boy, your blood pressure sure is low' and give me a drug. Then, the next nurse would come in and say 'wow, you're blood pressure is really high, I'd better give you something for that'............"
After about 5 hours, the nurse at the acute care center came in and suggested that he should rest his voice. "You're going to have a REALLY sore throat tomorrow", she said.....
I'm having an incredibly bad day, and it isn't even 10 AM.
I have two dozen complicated errands to run before noon and I'm still in my pajamas. There are three different events I need to attend tonight (one of which features my daughter, the other two my business partner and some of my dearest friends), but the times are all in conflict with each other.
The living room is still a mess, with boxes of records all over.
Worse yet: to simplify our lives, we started using the electronic bill pay offered by our bank. I set it up so all of our bills should have been paid on the fifteenth. The money was deducted from the account. But as of the thirtieth, nobody has been paid. Why? I was mystified. It took much research to figure out that the bank never sent the money. They have no explanation.
It isn't healthy to get mad at technology and if I'm going to get all this other stuff done I just need to buck up so I'm going to stop thinking and turn on music and tell you something nice:
Last week we went to Sand Point and sat on top of a hill and when the kite flyers and frisbee players left, the swallows came - flying just inches above the ground, swooping and flitting all around us.
For some mysterious reason, the White House shelved a report detailing a looming 44 trillion dollar deficit.
History is a bitter companion but does offer up some lessons. For instance, trickle-down didn't work. Supply-side arguments are just plain silly.
I feel so nostalgic for olden times, when we had a surplus, and people had jobs, and there was a national debate about health care.
I was reading a Neil Postman book and stumbled across this paragraph:
Apparently the process of the universe, from galaxies through stars and right down to the atom, is one of cosmic equilibrium-seeking. All the little positives are gravitating toward all the little negatives, and when they finally meet up, there is complete equilibrium -- which means, for humans, death. Life then is an enclave of temporary anti-entropic activity -- organized disequilibrium, or pockets of directed energy. All forms of "order" are anti-entropic, and this includes all forms of organized human behavior.
Just as my daughter put on a song with the refrain You down with entropy? Yeah you know me started playing. It is a hilarious and precise definition of the scientific principle.
I woke up early, puzzled by the fact that my arm felt bruised and sore, and could not think of what had happened. It is a good thing I made note of smashing it.... didn't remember the incident at all.
Yesterday before the computer adventures I went to the chiropractor again. He has decided to fix my hips; quite a lofty goal. I have a mess of adhesions in my stomach cavity, my pelvis and coccyx have been fractured and I have bursitis in one joint. The basic predicament is that because of all this damage (and other things I've forgotten) the skeletal infrastructure is - to use a medical term - wonky. The muscles and soft tissue have adapted to accommodate and one leg is gradually getting shorter than the other. My operating principle is to ignore the whole thing.
If not for the meteor shower incident I would be merrily tottering along without any chiropractic visits but that broken tailbone is too pesky to ignore. So I've been going in every week and the fellow makes the bones go back to where they belong... and after each appointment, it is like having sea legs. I'm walking properly and without pain.
Yesterday he told me that I've made rapid progress and that my back, just last week a solid mass of tension, is relaxed. He wanted to know what happened in my life to cause such a rapid improvement. I shrugged. Life has been pretty sucky. But at a certain point in any longterm crisis, this always happens. I used to nap during wretched medical procedures, not because I was traumatized, but because I was efficient. When I think about it I can control any group of muscles; and when my bones are wacked back into their proper position I can definitely do the rest of the job on my own.
Some new Soft Skull books reviewed in the Willamette Week:
Thoughtful, critical, committed to expounding an openly manifold perspective toward all modern life, these and other releases by Soft Skull endorse a new, enlightened way of looking at society. Harsh politics and inspired fiction aside, in a nation that starves for real reality, Soft Skull Press has solidly grounded, daringly provocative food for the brain.
It is very hard to write when the laptop not only crashes every two minutes, but also resolutely refuses to open Word. I tried to write in textedit and move the stuff over a hub connection to the computer downtairs in the teenage girl lair, but that software is also evidently broken.
And I still can't find the boot disks.
Finally I completely rearranged the living room, dragged in a desk, and moved the computer upstairs.
Of course, stumbling and smashing my forearm in the process.
Now I have functioning software and a stable OS for the first time in six months.... the only real problem is the fact that it is not aesthetically pleasing to have this machine in the midst of my living room. It also displaced all the albums, and I don't know where they'll live now... but I can write again!
My favorite movies this week are Support Your Local Sheriff! and Paris when it Sizzles.
Yesterday I drove past the Sea-Tac mall and remembered the huge thrill of seeing Escape to Witch Mountain the first day it was released in 1975. I was four years old; I still have the story album and painted our Portland living room to match the color scheme of the children's bedroom after they left the orphanage.
Public comment is a core value of our democracy and I am aghast that the principle is being eroded so rapidly.
From the ACLU:
The Federal Communications Commission is reviewing a rule that would reportedly allow corporations to further increase their media ownership. Diversity of ideas and opinions are key to the functioning of a healthy, stable democracy. If a handful of corporations are able to control the media sources for the majority of Americans, this diversity may be threatened and lost.
Furthermore, despite the significant public interest in this issue, the Commission is meeting behind closed doors without public review or input from Congress on the actual rule.
It is critical that we preserve diversity and have public comment on an issue of this magnitude.
For more information and to send a free fax to the FCC commissioners:
We went to pick up the kids in Tacoma and had coffee at the Antique. The place has literally not changed a tick since the first time I visited in 1986. It was even the same person at the counter. I took many light-hearted notes about our Pierce county adventures but I'll save them for a happier day.
This afternoon we heard some more bad news from Denver. I just bought Byron a one-way ticket home to help his parents in whatever way he can. Any continuing positive thoughts for the family are much appreciated.
On July 12, 2001 Portland hosted the largest meeting ever of the Hip Mama community. The event was totally DIY and handcrafted; we expected 100 or so people to show up and attend workshops, hang out, share food and listen to music. We had adequately prepared for an intimate event, and we were all surprised when the numbers ballooned to a total of approximately 700 adults and children from all over the continent.
The Portland community served up major and minor miracles to feed and house and direct and register and comfort and triage and support and otherwise assist - with little money, no central decision making, last minute venue changes and chaos of all sorts. The volunteers and participants were fueled by juice, falafel, determination and love. Volunteers worked tirelessly and contributed their time, thoughts, energy, practical resources, and talent.
The day after the Portland event I threw a party at my house for friends and neighbors and then flew to Paris for the European Gathering. I was confused by the wild popularity of an event I had originally envisioned as a picnic, and I was exhausted. During the Gathering I had not slept for more than an hour each night because there was so much work to be done. The contrast between Portland and Paris could not have been greater; in Paris I met approximately a dozen beautiful mothers, fathers, and children. We wandered around the city talking and enjoying our days. The event was sweet and fun and exactly the tonic I needed after the large Portland event. I started to think about issues like economy of scale.
While talking to my friends and fellow organizers, I had a series of realizations. The most significant was that putting on a huge, centralized event was at odds with my own philosophy of organizing. I did not want to imply that it was necessary for anyone to travel long distances, spend money, and leave their normal lives behind, to participate in a Hip Mama Gathering. My core goal, expressed through six years of smaller events in Portland and the tours, was to cultivate real-life community wherever people actually live. I want people to find friends, and large events can be a helpful tool, but that particular kind of project is not central to the DIY vision of Hip Mama.
The fundamental truth is that I want to give people something they can hold in their hands. I want everyone to know they can make their own zine, book, band, web site, event, community. I want to help people find each other across real and imagined barriers. I want to throw parties, but I want to meet and enjoy the people who show up.
Hip Mama will not be putting on another Gathering. Ariel requests for legal reasons that you do not use the Hip Mama trademark, but we send our love and best wishes to anyone organizing their own independent event. Please take what you like from the Hip Mama example, and look around for different events and activities that suit your own particular style. For instance, Ladyfest is an event that started with the vision of one small group of people and has been replicated widely according to the needs of different women around the world.
Good luck and best wishes!
With the trach in place, he seems to have improved. He can't talk very well yet but he managed to convey the following:
I have been a helping professional for thirty years and you, he pointed to the nurse, are treating me like garbage.
Oh, happy day - the moment when an ICU patient gets mad is an awesome turning point. It is the complacent fade that is more worrisome.
He asked for juice. He said that he didn't appreciate the fact that while he was in a coma they didn't explain what they were doing to him.
This is by no means a guarantee that all is well. But it is really good news.
I'm living in a weird twilight world where news that a trach is necessary seems like progress. I've just been driving around the city endlessly for days and days, trying to think and not coming up with anything at all.
No additional information yet today.
Last night the lads were fiddling around with my car keys, playing some kind of throwing game, and then turned to me with shocked expressions to confess they broke my keychain. It is a wonderful keychain, a silver cross with a revolving Madonna. The actual child looked like he might cry and Byron said We're sorry! We'll replace it! We're really sorry!
I am a fastidious person. I remember with a jab of sorrow every toy that was ever broken by another child, and torment myself with every item ever broken by my own hands.
I sighed and took the broken cross in my hands, looked at it, and then tucked it away. You can't replace it.
Byron said Why not? Where did you get it, the Santuario? I'll take you to the circus again this summer!
I shook my head and turned to stare pensively out the car window. I got it at the Vatican.
The weekend was all about missed connections. Stevie Ann and Erin Scarum thought they might visit but never arrived; I couldn't go to the zine workshop; and I was just too tired and worried to go to Viking Fest. My mother has a store in downtown Poulsbo and it would have been quite surreal to sit there and watch the parade. But maybe another year.
The news from Colorado: we have been told not to be overly optimistic. I'm not ready for that message. I am still choosing to believe that he will get better.
Last night we watched the sunset from the beach at Fauntleroy.
When I'm truly depressed I don't listen to music. I can't organize myself to turn it on. But I'm not depressed right now. Instead, I'm in a manic anxiety phase (because there is nothing practical I can do to help and Denver is so far away). When this happens my old friend the internal soundtrack takes over. Songs just start repeating endlessly in my brain - and it is never the songs I wish to think about. Lately this has taken the shape of REO Speedwagon and Jefferson Starship; but not whole songs, just fragments of songs, looping endlessly.
This is not acceptable.
When this happens I have to play music constantly to wash out the infection .... and it has to be music that offers a true anodyne.
I can't find our Fugazi albums. I wonder if we loaned them out before we left Portland; I really want to hear I am a patient boy and I wait and I wait and I wait.... I have a hunch that my daughter took off with some of my other favorites... so I've been listening to a Matador compilation someone sent me years ago. When I leave the room Byron sneaks in Elliot Smith, which is also sufficiently melodic but way more depressing. We compromise by playing the If I were a Carpenter compilation. My favorite off that album is the Sonic Youth cover of Superstar. Which reminds me, I wonder where my Ciccone Youth album went.... but I haven't seen it in a decade; presumably I lost custody.
Another great song is a Throwing Muses I have on a cracked old cassette, about that mean old Texas sun. Also the Kicking Giant song She's Real. None of the Tom Waits cd's work to swat away bad thoughts; they are the background music to my love stories so I listen to them when I want to remember good things.
I organized all the cd's but didn't bother to alphabetize because my foraging family would just mess up the system... but maybe I should make a mix tape.
That would keep me busy for awhile.
This online journal was started on May 18, 2002. One year later, this message is number 318. I did a word count a couple of weeks ago and came up with a number above 60,000 - so I've written the equivalent of an entire book just noting my daily thoughts.
I started the diary because my life was about to become incredibly chaotic; I was waiting for the results of some wretched cancer tests and we had decided to move away from Portland. On May 18 I wasn't sure where we would end up or if I was going to live for another year. On May 22 Byron got the job offer that brought us to Seattle, and then everything accelerated. We had to dismantle our life in Portland and cast off into a new future, complicated by the fact that we were going back to my home. It was all very confusing and difficult to cope with, more so because it was a positive change and our friends didn't want us to leave.
Somewhere along the way we rented our house to some friends and bought a different house from other friends. The cancer tests came back, not exactly clear, but ambiguous enough to ignore. We were grief-stricken about leaving our community and I realized after months that I had been wearing black clothes every day; hardcore mourning happening simultaneously with a deepening appreciation of a new home.
Now it is May 18 again. I predicted that we would see many of our Portland friends more after we moved away, and this has been true. I expected that we would lose touch with others and this has also been true. I knew that we would be able to locate an abundant community in the new city and I was right.
This journal functioned as a laboratory for me to try out different pieces I was writing for publication. It also kept me in touch with friends who live all over the world, and allowed me to keep my thoughts organized and my opinions exercised.
Looking through these entries I'm startled to see how much happened, but also how much I didn't talk about. For instance, the book deal doesn't show up until the day I announced the call for submissions. I really don't know why; there was a whole process of writing a proposal, submitting to publishers, deciding who I wanted to work with. That might have been interesting to share but one of the things I learned this year is that I am excessively secretive. But secrecy is a trait I come by honestly, and living on the Puget Sound reminds me of that fact. My great-grandparents were so sneaky I don't even know my true family name.
Separate from my wild personal oscillations, the year has offered a crazy assortment of political issues. I'm hoping that the coming year is less challenging. Somehow I doubt that my wish will come true.
We watched the sunset from the beach at Carkeek and then drove home. The news from Colorado is slightly more hopeful but we're agitated and restless and worried.
My daughter came home from her lengthy school trip -- she wore an Impeach Bush button as she traveled through Idaho and Montana. She says that everywhere she went people asked her What is that supposed to mean? and she replied what do you think? in her sauciest manner. When random adults at gas stations attempted to debate the point she verbally slaughtered their opinions and perspective. I find this hilarious and also shocking; I wouldn't wander around redneck territory with an incendiary slogan on my body. Not even in my own hometown. This girl, although she looks like my clone, has a whole enervating spirit of her very own. She doesn't really take after my biological line when it comes to verbal acuity.
At some point this week I went to see a new chiropractor. He took a partial history and then sat back in his chair and stared at me. You have children? he asked. I nodded. He blinked and then said people with that much damage to that area of their bodies don't have kids - they can't.
I wasn't supposed to be able to, and doing it nearly killed me twice over, but I did have children. Not because it was possible, but because it wasn't. I have a driving need to prove doctors wrong.
Tonight we heard that my father-in-law has been put into an artificial coma. There are valid therapeutic reasons for this course of treatment. But I'm half crazy with worry. I would say my heart is breaking, but it isn't my heart - that isn't the part of me that feels this kind of grief. I feel it in my neck, as a sharp slicing pain, and in my shoulders curling forward and going stiff, and in my arms, at this point cold and numb. I feel it in the parts of my body that want to reach out and relieve the beloved person who is suffering.
I believe that there are probably a couple of thousand people actively praying for this amazing man right now; that is probably the only thing that any of us can do. He is a pastor, teacher, therapist, husband, father, friend. I don't think it is time for him to leave us, but I don't know how to help him come back.
Last night we had dinner with friends on a high hill and watched from their windows as the sun went down beyond the mountains, pink light casting across the city. Driving home we realized that the clouds had parted and the lunar eclipse was happening. We drove down to the lake and walked out on a pier and and sat together watching the shadow cross the moon.
News from Colorado is still worrisome. Thank you again for all of your positive wishes and support.
Suess is expecting her baby to arrive any day and her email signature has changed to this:
To travel with the unawakened makes the journey long and hard and is as painful as traveling with an enemy. But the company of the wise is as pleasant as meeting with friends.
Follow the wise, the intelligent, and the awakened. Follow them as the moon follows the path of the stars.
We spent the morning at the beach and came home to hear that my father-in-law has been sent back to the ICU. We're stuck here unable to do more than worry.
If any of you believe in a system of cosmic unity, or god, or religion, or just plain love, please think of my father-in-law tonight. His decency and sweetness are so extraordinary I can only hope that he makes it through this crisis. If you don't happen to know him, then please take a moment and think of your own beloved family members and hold them tight or call the people you miss or write a letter or look at the moon or do something positive, anything at all.
The week has had ragged edges. My beloved father-in-law is out of the ICU which is excellent news, but my son was already skittish from being sick and the trip and worry about grandpa when the kindergarten teachers decided to show Spirited Away. It was bound to happen eventually. There is no way to control all of the media the children see when they go to school or visit friends. It was just simple bad timing for our family. My son actually did an amazing job of dealing with the situation; he asked for another activity. But he isn't happy about the whole thing.
Stella was supposed to come for lunch but we didn't synch up and I had a little bit of extra time in the afternoon. The teenager is going on a long school trip and she was theoretically packed - I would only need to show up and say goodbye - so on the way to the school I decided to do a little research. I'm trying to work on the creepy memoir but I'm hampered by the fact that I didn't keep journals. I need more scenery, more piquant details. I thought that driving over to Children's Hospital would be handy. To jot down notes about the foliage, that sort of thing.
As I drove I was listening to the eighties channel and thinking about narrative structure. When I turned into the lane to go to the parking lot, a Cure song came on and I saw the big square building and then I saw parents standing around outside, looking haggard and sad, and I just lost it. From seemingly nowhere, a whole channel of grief opened in my head and I started to sob.
I turned the car around and left without taking any notes. It is hard to work on a creepy memoir when you are reluctant to think about your chosen topic.
Of course as it turned out my daughter wasn't ready for her trip. She wanted me to go buy an assortment of last-minute items and then on the way to her destination she remembered that she needed to get her bendy toy from home. Call me a sucker (she often does) but I can't deny the children certain requests. We drove across town in rush hour traffic, and back again, and then after I hugged her goodbye I finally drove home. The entire thing, which I conceived as one small stop and then a brief interchange of fond farewells, took seven hours.
My poor son fell asleep in the car and now I don't get to watch Bedknobs and Broomsticks.
Last night we were running errands and stopped at Kara's house. Ben opened the door wearing a gas mask and said Hello. I'm cleaning the bathroom.
I haven't decided who will have my support during the primary race, but right now I have this hunch: no candidate of any party will get my vote unless they either a) served in a war b) had a disability deferment of substantial merit or c) are of an age when none of their peers went to war. But in the scenario of the third option, I will expect legitimate international service work. If we are going to wage war I want a Commander in Chief who understands what that means.
I am keen to know more about all the candidates than the superficial stump speeches allow but life is chaotic and busy. I just got around to reading the December 2, 2002 New Yorker profile The Long War of John Kerry by Joe Klein. The article is really worth seeking out. Kerry has an interesting personal complexity that might hinder his campaign, but his nuanced understanding of foreign policy is commendable.
I'm biased in favor of politicians who have served long terms in office and participated in signficant public policy debates - and Kerry has a huge advantage over other candidates on those points. You should read the article if only to pick up the facts about Kerry's investigations of the link between narcotics and terrorism. Kerry volunteered for active service and as a decorated Vietnam vet, he not only protested the war but later helped form bipartisan Senate coalitions of veterans to address issues pertinent to those who serve. This is complicated stuff, not what you'll hear in sound bites or pick up from headlines.
The plague has entered my household - the boy child brought it home from kindergarten, took it with him to infect the grandparents in Colorado, and last night it took Byron out. Oh, how I hate to vomit. It is the worst thing in the world. I know there is no way to help the fact that I've been exposed, no amulet or charm to ward it off.
If I had experienced morning sickness I would never have chosen to have babies.
This has been a strange day; a day on the precipice of anxiety, waiting for more news of a beloved relative, cleaning and tending to a sick person, trying to write.
The surgery was scheduled to take all day; rather than fret at home we went out to dinner. Trolling through the U District we saw the kindergarten teacher driving by and rolled down the window to shout an invitation for her to meet us at the pho restaurant.
We had a raucous, crazy dinner with the girl telling grand stories and the boy balancing chopsticks on his nose. Amidst the din we could only make skirmishes at other topics but while I was describing our house the teacher waved her hands around. But I've been there!
Apparently she is friends with the people who sold us the house. It was a rather startling coincidence.
Back home again, Byron called Denver. The surgery lasted twelve hours and his dad had been released to the ICU, but he knew his name and the date and joked a little before the pain meds helped him fall asleep again.
My father-in-law is a pastor and therapist. For the past twenty-five years he has worked with children who have been institutionalized -- children who cannot live at home because they have severe psychiatric disorders. Many have been the victims of horrific abuse. He helps the kids, and their families, put their lives back together.
My father-in-law is gentle, sweet, kind, with a Tennesee accent and tidy wardrobe. He is a good father, and a good man.
Today he is having major spinal surgery. I'm thinking very carefully about all the positive things he has done, and how important he is to so many people. If I were in Colorado I would be at the hospital, but since I can't be there I will simply be mindful and hope for the best.
China mailed me a splendid copy of her newest issue and a note saying many nice things, including the suggestion that if we were Beats she could be Mama Bukowski and I could be Mama Burroughs. You should definitely buy her zine:
This issues features: All Mom Punk Rock Band THE LACTATORS interview by 11 year old band members child; The Maryland Tradition of going to the Ocean: stories and a photo-essay of 90 years of beach pictures in my family album; and a water birth story by Faith Void including 22 pictures in sequence of the birth! Plus tales of pet rats dieing and children working at Mcdonalds!
Its a fat one (57 pages) so it cost Three dollars or trade your zine/love trades
The Future Generation
The Liston clan came to visit twice last week - Gabriel's mom and brother dropped in (from Colorado by way of Portland) just to say hello, and then his mother came back up on Friday with the new baby and her parents. They needed to buy some stuff at Ikea so I drove out and met them and wandered around the store, watching as Gabriel suffered through a retail ordeal. The baby is two weeks old and lovely, with a furrowed brow. Danielle sat down to nurse the baby and I sat on the floor next to her while Gabriel and Sheila raced off (barefoot) to find curtain rods. We talked about how curiously nice the family is. They all have a knack for happiness and decency.
I held the baby for awhile and she fell asleep, one arm flung out.
Did I mention that my daughter has had, for the last several years, a plan to take over the world via the squirrel kingdom?
Two years ago I arranged for the Chorus to present a May Day program at the co-operative school. They arrived in an assortment of garments - most in some variation of working person drag, tattered gowns layered over trousers, socks cut down to gloves, boots and wigs, a swarm of earnest activists crowding on to the stage. It was remarkable that they agreed to the program, because the assembly was early in the day and the school far from the other events they had planned.
The Chorus had prepared several songs and some short educational statements. They talked about the history of the labor movement, and told the kids they were lucky to live in a country where children are not forced to work in factories or mines. One young man talked about a piece of news that week, a report from China of a fireworks factory exploding, killing the workers: all children.
Then my daughter joined us in singing Union Maid:
There once was a union maid
The union maid was wise
When the union boys they seen
A woman's life is hard,
(Source: Woody Guthrie)
The children went wild and sang along enthusiastically; the parents in the crowd were astonished and thanked the Chorus profusely; the principal laughed and laughed; and one prissy teacher objected to the word badass. Her petty complaints turned into a ban. The chorus is no longer welcome to perform at the co-op.
When the kids get home today we'll talk about May Day and sing union songs together.