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From Oregon

Volume 5, Number 2: Fall 2000

Here I am in Corvallis, Oregon.

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This bulletin has something of a déjà vu quality to it. Several of the sections are reminiscent of ones in previous bulletins. Well, it can't be helped; that's the way my life has been. The only consolation you have is that this is free.

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Loss of Knife

To make a needlessly long story short, I lost my Swiss Army knife again. This is the same knife that I lost in the summer of 1995, on a journey from Tennessee to Oregon (see Life in Tennessee vol. II, issue 1). Instead of losing it in Idaho, though, this time it was on my home turf: Corvallis.

Last spring I spent a few weeks working at an office at Oregon State University, filling in for a secretary who was recovering from surgery. My friend Margaret worked at the desk next to mine, and the work wasn't hard, so it was an enjoyable job. The most annoying task was the daily distribution of bulletins to a few places throughout the campus. In other words, the job was easy.

However, on one of those distribution runs I lost my knife. I'd used it to open a box of bulletins, put it down on the floor of a well-traveled lobby, and forgotten it. Half an hour later I realized it wasn't in my pocket as usual, and searched the lobby for it. It was well and truly gone.

I hate losing things, particularly ones with sentimental value. Even though it was just a knife, it was also one of the few links to my grandfather, from whom it had been a childhood present. It took me a few days to get over the fact that it was gone, and wasn't going to be returning this time. At least I had twenty years of memories of it.

Even though it was gone, I decided not to give it up without at least a token effort of recovery. I made a sign and posted it at the scene of the loss. A week or two passed and the secretary healed. The job was over, and the knife was gone. I decided that I wouldn't buy myself a replacement; since all the other knives in my life had been gifts, I'd wait until another appeared. I'd reached a state of acceptance.

It's said that washing your car to make it rain doesn't work. This is of course true, but that doesn't mean that it can't rain just after you've washed your car. Coincidence does not imply causality. It worked for the knife, too; Two weeks after I'd accepted its loss, I got a call from my friend in the office. Someone had sent the knife to her through interoffice mail.

I tried to find the folks who'd found it, but was unsuccessful. Thanks to them anyway.

While writing this story up as a Web page, I confirmed a suspicion: the knife wasn't really a Swiss Army knife, but an imitation. I don't care. It's useful and has a lot of good memories associated with it. That's enough for me.

The knife might disappear again someday. That's okay.

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Visitors

Yes, we had visitors. They all showed up around the time the Oregon Country Fair occurred. This time we had Paul's friend Wulf, and Glacier's ex-lover Richard, his ex-wife Linda, their children Alex & Emily, and a friend of Emily's. Finding sleeping arrangements for all of these folks was a task that was not mine, fortunately.

Rather than just be boring folks visiting the way-out Fair, we made some accessories. In past years Glacier & Paul had made small horns to wear out of Fimo, but they proved too heavy to wear for the whole day. Emily came to the rescue by suggesting trying Crayola modeling compound. It's not unlike a somewhat stiffer, unsticky marshmallow creme. It's so light that a cubic foot of the stuff probably weighs about two pounds. Plus, it doesn't have to be baked; it cures in air, and retains some flexibility when cured. So the night before we had an impromptu craft session.

Glacier's goal was to make a large, branching set of deer-like horns. Since Paul wasn't around, we made a Tinky-Winky-like triangle for him to wear. There were antlers. Emily tried to make a snake that wove around her forearm, though that wasn't quite a success. Wulf made a very impressive set of ridged horns that he painted in shades of brown and yellow; they really looked like horns from some exotic African gazelle, albeit a little smaller. The next morning he ringed the base with fur and stitched them to a baseball cap. They were quite striking.

My design was to make a black and white mask that completely covered my upper face and forehead. I enlisted Linda's help, and lay back on the floor as she pressed a quarter-inch thick layer of it over my face. She and Emily used straws to open holes for my nostrils, then I lay there for an hour as the conversation and creativity flowed around the room.

In the morning, I went out to the farm early and got the mask. I cut two pupil-sized eye holes, and attached a cord around the back to hold it in place. It was still an unpainted flat white. My desire was for it to be half black, but not with a simple vertical division; I wanted the separating line to follow the contours of my face. Wulf (a professional prop maker, among other things) suggested taking it outside into the morning sun and letting the shadow line divide it into two sections. Perfect! Ten minutes and some black paint later, the mask was ready to go.

We piled into two cars and away we went. I spent most of the time wandering the fair on my own, which was an interesting experience. Spending hours in a mask which presents no facial expression is disconcerting after a while. Some people appreciated it, though; I got a few compliments. I don't think I'd do it again, though. It's a bit too dehumanizing.

The fair was fun, of course. There were a lot of people wandering around with painted skin. Wulf and I came up with an idea for a baby-painting concession. The rates would be as follows:

We laughed.

Wulf stayed on for a few days after the Fair. On the last day we made a day trip out of driving him to his sister's, who works in the Columbia Gorge. We crossed the Cascades and walked around a waterfall. He, Glacier, and Paul got to see the Belknap lava beds for the first time. The weather was very clear, so we could see all the things that had been hidden in fog the last time I'd been there. After we left, we drove north along the eastern side of the Cascades. We stopped along the rode at one point and Paul and I harvested some aromatic sage growing along the road. In the middle of the afternoon we arrived at our destination, the Maryhill Museum. It's a beautiful museum on the north (Washington state) side of the Columbia Gorge, overlooking the river. It's just west of the reconstruction of Stonehenge.

The museum was interesting. It housed a wide range of artworks, and several specialized collections. There was a large display of decorative chess sets from around the world, and a set of furniture that had been donated by Queen Marie of Romania. Since we arrived late, we actually saw very little of the museum. I hope to return there someday.

We left Wulf with his sister. And that's pretty much been it for visitors.

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Spokane

I went there and didn't see Julia Sweeney. I had a good time visiting with my friend Dave anyway, though the bus rides there and back were murder. Next time I'm flying.

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Endangered Words

While Wulf was here, he made a sad prediction: the apostropheless word "its" was going to disappear from the English language. He's correct; the incidence of the improper substitution of "it's" for "its" is rapidly increasing. It's not hard to understand why; "it's" appears to follow the rules that a possessive form ends in "'s". However, "its" is an exception. Perhaps people who mistake one word for the other need a gentle guide to the proper use of the apostrophe. Perhaps Steven Notley's Bob the Angry Flower put it best.

Also on the endangered list is "whose", which is rapidly being driven to extinction by the incorrect use of "who's".

I for one will miss these two words. They were never glamorous nor trendy, but they were always stalwart and willing to serve.

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The Memory Organ

Near the end of August, my friend Wendi and I spent a lunch hour delivering Meals on Wheels, chatting the whole time. We had no problems, but there was one thing about the trip that was very strange.

After we'd delivered most of the meals, I started to notice a distinct odor. It soon became apparent that it was coming from Wendi's vehicle, an old minivan that wasn't worth repairing. Something was wrong with its exhaust system, and the odor was definitely coming from it.

What made this so unsettling was that I'd smelled this particular odor before. It took me right back to the early winter of 1995, in Murfreesboro, Tennessee. If you remember the story of my employment at the Internet start-up that didn't ("The Divine Comedy", in Life in Tennessee vol. II no. 3), then you might recall the $100 car I was forced to buy out of desperation. When it was running, the interior smelled of exhaust, and I had to keep the window rolled down (even in 35F weather) out of fear of dying from carbon monoxide poisoning. Wendi's vehicle had the same smell, and it took me right back to those miserable times in Tennessee. For the first time in five years I felt trapped, with nowhere to turn. The memories were that bad.

After we'd delivered all the meals, I went home, changed my clothes and put them in a bag, and took a shower. The odor, you see, was still lingering in my nose. The memories it brought back were so distasteful that I couldn't get anything done until the smell was gone.

But nothing I did worked. For the next few weeks, I could not stop smelling that noxious exhaust. It wasn't in my clothes; I would occasionally catch the odor at odd moments, inside or out, in still air or wind. After a few days it became apparent that while the source of the odor was gone, my nose (that renowned organ of memory) was bringing it back on its own. Over the next few weeks I detected it less and less, to the point where it's almost completely gone.

I marvel at the complexity and subtlety of the mind and the sense organs. Yet I have to ask: if my mind had to choose one odor to revive and hold on to, why one with such strong bad associations? Did it hang on to that odor precisely because the associations were so negative, or so strong?

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Idiomatica

"Yes, he is the incarnation of evil, but it's a dry kind of evil."

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The Subtle Sense

Another sense that's a bit subtler than smell is one's sense of design. It's not a physical sense, true; but it is something that can be developed through exercise, not unlike the others.

What's been surprising me over the past several years is how my design sense has changed. I'm not an artist, or graphic designer, but my critical faculties for design have slowly been improving with no effort on my part. For example, consider Web pages. My first page was an okay attempt for the time, but I'd be embarrassed to post it now. Whereas the original page was full of large graphics that weighed in at more than 50K, the current one uses just seven small-to-medium graphics that total about 8K. The images on the site are simpler than ever. And they're more satisfying than they've ever been.

The evolution of the design sense is not akin to consciously gaining experience in a field. Consider programming. A few months ago a friend gave me a copy of Turbo Pascal 3.01, a DOS compiler that had been popular for PCs in the mid-1980s. Within a few days I'd recreated from scratch a program I'd written for an independent study. Even though it took me only a day, the program was better than the previous version had been. The new code used optimizations that I hadn't thought of back then, though they seemed painfully obvious now. Yet these changes were consciously applied; I knew exactly what needed to be improved and how to do so. Through practical experience in the past decade, I've learned better programming technique. Even though this was not its goal, this small project demonstrated that fact perfectly.

The design sense isn't like that. I haven't read any books on graphic design, but my sense of good design has shifted radically. A few years ago I designed a Web page logo that was exceedingly complex; it consisted of a figure filled with a rainbow gradient, in which there was a repeating pattern of a smaller version of the figure's outline. Floating over all of this was white text with a drop shadow. The text was filled with a grayscale version of the small repeating pattern. When I finished the logo, I was quite happy with it.

These days, I look at it and wonder what I was thinking. When I designed a logo to replace it, I settled for a simple black & white outlined version of the original figure. No color, no repeating overlayed pattern, no drop shadow; just an outline in black and white. And I'm still happy with it. But the question is "for how long?". Will my design sense evolve once more? If so, into what?

Other questions remain. Why did very simple designs begin to appeal to my sense of good design? At the moment I prefer simple designs, but how much simplicity is best? How far should a Web page be simplified? Is any color scheme that uses more than two colors (and black and white) in questionable taste? Is this "less is better" esthetic just another phase that anyone who's interested in graphic design passes through?

If you've experienced something like this, I'd be interested in hearing about it.

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A Stay at a Spa

Not too long ago, I celebrated a birthday. I'm 238.

Two hundred and thirty-eight?, you ask. How did he come up with that number?

It's easy. The expected human lifespan is about seventy years. When I was born, though, the average lifespan for a person with cystic fibrosis was about a decade. So, if you calculate the average human lifespan times my current age divided by my expected age, you get 70 × 34 / 10 = 238. Simple.

If you like, think of it as being analogous to dog years, but substitute "CF" for "dog".

So there I was, 238 and feeling it. While the summer had been okay, by its end I was feeling pretty down. Even though I was on a strong antibiotic (inhaled tobramycin -- yuck!), it wasn't helping. My lung capacity had decreased to the lowest it had ever been, to the point where walking up two flights of stairs forced me to stop and catch my breath. I was moving slowly to conserve energy. One day, when I started feeling pain in my chest upon inhalation, I decided it was time to bite the bullet and schedule a visit to Oregon Health Sciences University for a cleanout.

I had really been hoping that a cleanout wouldn't be necessary. I'd had two before, in 1984 and 1987, but none since then. Cleanouts aren't strenuous, but they are boring. Also, the hospital was in Portland, where I know only a few people. So in a very real way I'd be on my own, unlike either of the previous times. However, those worries didn't have much strength compared to how I felt. It was obviously time to go in again.

OHSU

The arrangements were made, and I went in. Lars and Paul drove me up and saw me to Admitting. To my pleasant surprise, it didn't take long to get me admitted and settled on the seventh floor, in room 101. I was a little concerned; the room had four beds, and some of the people in there definitely weren't doing well. Besides that, I couldn't help but be reminded of the infamous Room 101 from 1984. My fears weren't of rats, but of medical treatment. When some people in white jackets came to drain fluid from the lungs of another patient, I scrunched down in my seat and tried not to get light-headed. A nurse arrived and asked me the standard check-in questions, distracting me from what was going on in the other bed. To my relief, within a short time I was moved to a single room down the hall.

I named this section "A Stay in a Spa" because that's what this trip actually felt like. Even before I went in I was on the mend, and beginning to feel better. So rather than being an unpleasant hospital stay full of nasty needles and such, this was more akin to staying in a rather boring spa. The staff provided me with meals and IV drugs, and left me alone to my own thoughts and devices for the rest of the time. I had plenty of time to reflect, read, and write.

(Actually, for a little while it seemed to me that since I was going to be in the hospital anyway, they should offer me my choice of elective surgery. That way the recovery time would be more worthwhile.)

One of the alternate titles of this section was "The Magic Mountain", which was something of a play on words. OHSU sits on the eastern side of Marquam Hill in south Portland, with a great view of the city. The view from my room was of the southeastern part of the city and the upper Willamette Valley, with the Willamette River meandering though it. In the eastern distance Mt. Hood was visible on clear days. I spent a surprising amount of time sitting by the windows, watching the sun rise over the distant volcano in the morning and sailboats dance on the Willamette in the middle of the day. Throughout the latter, XTC's bittersweet song "Yacht Dance" quietly played in my head. The view was very relaxing; it really was like being at a spa. In this little way, it was indeed a magic mountain.

Part of the "being at a spa" mentality -- or perhaps just stubbornness, or denial -- was my refusal to wear hospital gowns. Every morning I dressed in my normal clothes. It helped keep me from feeling like a mere patient with little power compared to the hospital's huge staff. On the few occasions where I had to travel to other parts of the hospital for tests, I walked. Wheelchairs were not necessary.

Another important part of maintaining some semblance of normality was to have goals. The list was long: write postcards, copyedit papers, read more of the book I'd been slogging through, work on a universal Turing machine, etc. Even though I was far from my normal schedule, that didn't mean I wouldn't get anything done.

But before I got to those projects, I had to get used to OHSU's routine.

In the past thirteen years, IV technology has improved. Rather than administering liquids through heparin wells, which are bound to fail after a few days, the staff gave me something called a peripherally inserted central catheter (PICC). This is a flexible tube that threads its way up a vein from one's arm to close to one's heart. It's harder to install than a hep well, but it can last much longer and doesn't require flushing with heparin (which stings) after each use. I was happy to have it, and didn't faint when it was put in. While it was going in, I was listening to Patty Larkin's album Perishable Fruit. The song "Coming Up for Air" seemed quite appropriate; I did indeed come up to Portland for air. When the installation was done, the woman who inserted it gave me a booklet on its care. I asked her to autograph it, and she did.

One of the good things about a PICC is that not only can it be used to infuse liquids, blood can be drawn from it. (I wish I'd known that before they drew blood a few hours before putting in the line.) I was really looking forward to not being stuck every few days (or three times in twenty-four hours, as happened in previous cleanouts). Little did I know that one of the antibiotics required a levels test, which couldn't be drawn through the same line the drug was administered. So I did get stuck one more time.

The other thing that's changed is the way IV drugs are administered. In 1987 it was done through a gravity feed; now there are pumps that force the liquid along. It was rather odd to watch the little caterpillar treads kneading the tube, forcing liquid through it.

The drugs themselves were dull: the standard antibiotics tobramycin and ceftazidime. They were given every eight hours, which meant I could get a few hours' sleep during the night. They did wake me up several times each evening, to change drugs and flush the line, which helped me remember dreams. Would the rock group Kiss really come to my hospital room to entertain?

The other and more unusual infusion was lipid emulsions. In other words, liquefied fat. Yes, for six hours a night, I got intravenous fat. The idea was to put more weight on me, since I have problems gaining it. Think of it as the opposite of liposuction; lipoinjection, if you will.

Keeping clean wasn't as hard as it was during previous cleanouts. Jeffery, a certified nursing assistant and health unit coordinator, helped wrap my arm before taking showers to protect the PICC. Showering while trying to keep one arm dry wasn't the easiest thing to do, but it worked.

It was impossible to keep track of everyone. There were a few nurses, the resident, the intern, the first year nursing students, the home care coordinator, the dietitian, the CF doctor and nurse practitioner, orderlies, the pulmonary therapists, and various and sundry others. Being seen by the first year nursing students occupied most of one morning; as it happens, I was the first patient they'd ever seen. Watching them go through the list of standard questions was almost cute. When it came time to go to the lab for a pulmonary function test, they came along. Since two orderlies had been sent with a wheelchair (unneeded), we ended up as a group of five walking to the labs.

The treatment was a textbook success. I was admitted on a Monday, and by Wednesday my lungs were back to normal. I was quite ready to go home, but one of the CF group convinced me to stick out an entire week. After all, she said, if you made it back to normal in two days, a week's treatment might have even greater benefit. If the chance to gain even better health was available, why not seize it?

I did.

The return of health had an obvious effect: I wanted to go out. Between the morning and afternoon treatments, there was an empty six hour period. I began to take day trips to downtown Portland. The first was an evening trip out to dinner with my cousin Elaine. This was followed by trips to Powell's City of Books, Powell's Technical, trendy 23rd street, and across the river to attend a Saturday morning tea with my friend Jeff. In all, I spent a lot of time out.

The trips went fine, except for the last one (Powell's Technical & 23rd, Sunday). The bus that ran from downtown to the hospital ran a few minutes ahead of schedule and I just missed it. Since it only ran every hour on Sunday, I had a long wait at a downtown bus stop. I spent the time watching people, and ended up having a few oddball moments:

• A cigarette-smoking, overweight woman passed me and then looked back to where I sat. She stood there staring with a smile that made me wonder if she were all there. After a long moment, she said "That's pretty" to me. I looked around, wondering what she was talking about. She commented "You look like Jesus", then went on her way.

• Moments after she walked on, a guy who'd been near her came up and asked me if I wanted to buy an illegal substance.

• Later, a guy asked if I were the guy who sold menthol cigarettes. At least, I think that's what he asked; he mumbled. He noticed my "No on 9" button and asked me when ballots would be available. When I replied that they should be in the mail soon, he wandered off down the street. What do I look like, the Board of Elections? (Of course not! I look like Jesus, that's what the lady with the disturbing smile said...)

I got back to the hospital an hour late and a bit crabby. It was hard to maintain the mood, though, since I was going home the next day. And there was CNA Jeffery, who, when he learned that I was going to be walking around downtown, offered me the use of his scooter. Though I didn't take him up on the offer, it was really appreciated. I gave him some Beanworld stickers, and he left a note with his email address before going off shift.

By the end of the week my lungs were as good as or better than they'd been at any time in the past five years. My energy was quite good, and I was more than ready to go home.

My real accomplishment for the hospital stay was jury-rigging the IV pump to muffle its obnoxious beep. All it takes is two rubber tourniquets and a ball of cotton.

Back Home

Back in Corvallis, we went straight to the local hospital's home infusion services. They had everything set up so that I could administer the drugs and lipids and flush the lines myself. The only thing I couldn't do was change the PICC's dressing, which I had to go back to infusion services for once each week.

Home therapy was a new thing. It was in some ways like being in the hospital. I still had to take all the drugs and do the therapy, but instead I had to cook for myself. Since the PICC couldn't get wet, it was hard to do dishes. They tended to pile up. It was still hard to take showers, but I managed to get one in every few days.

The lipids were administered with a pump, but the antibiotics were a different case. Instead of coming in bags or bottles, they came in rubber and plastic bladders like three inch balloons. When the clamp holding the line shut was released, the pressure of the collapsing balloon walls squeezed the antibiotics solution out. So I spent most of the next two weeks attached to little balloons that didn't float.

The drugs were actually a little more annoying than in the hospital, since I had to get them out of the refrigerator an hour before use. A typical evening's schedule looked like this:

Getting a good night's sleep was still a challenge.

Alas, all good things come to an end. With only one problem (thanks, Elaine!), the treatments were finally complete. The PICC was pulled out, my arm began healing, and I could do dishes and take showers once again.

Life is good. Here's hoping this won't have to be repeated soon.

Thanks to everyone who helped, especially Lars and Paul.

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Work (Such As It Was)

Copyediting, to my surprise, has been paying the bills. Over the last few months I increased my rate of papers until I was averaging more than thirty per month. At that rate, it paid all my bills and still left me time to work on other projects. This is just what I desired.

Alas, all good things come to an end. The editor of the Materials Research Bulletin, a professor at OSU, decided to step down from the editorship effective the end of the year. The new editor has changed the bulletin's criteria for accepting papers, and won't be needing the services of a copyeditor. So, just a few months after I'd reached the point where my employment was stable again, it's time to go looking again.

In the meantime, I've been doing a bit of this and that around town: filing, programming, Web site creation. The best description I've found for what I do is "dogsbodying". Woof.

Who knows what future will bring?

Perhaps a Milk-bone.

And that's it for this issue.

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