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Despite a seemingly harried beginning, the holidays were really wonderful. Jill, Lian, Daniel, the rest of my family and friends...
I've been reading through past entries here in the blog; memories, embarrassment at much of my tortured prose (but I'm still keeping to the 'lightly edited' principle to keep this text going), and a fair amount of amazement at the twists and turns life takes. Also, though, I notice a lack of the humor that keeps things bearable for me and close ones when times get tense. So serious! So solemn! Everything seems often too drenched in significance. You'd think this was life or death or some such nonsense. At least right now, existence surely doesn't feel that grim.
I thought I'd start this year off differently, then, and lay bare some of the horrible jokes that we trade in my family. Every year we have a slight contest of sorts, the goal is to invent the "joke of the year" with an appropriate holiday theme. My mom started off with this entry:
Now it turns out that the mayor was part of the small minority of people in town who was not a big fan of Dolly Parton or her music. However, the ball was such a large event that he was obliged to attend. He hadn't heard about the life-sized pictures being used, and as he entered the gala and confronted the repetition of Dolly Parton images in each room of the Convention Center, he exclaimed "Heck! The ball has halls of Dolly!"
Jimmy asked, "But what about our family? Where did Grandma and Grandpa get their drinks?"
Jimmy's father pointed to a sewer grate in the street outside and said "Well, Grandma would run over by the drain, dear."
Because he delivered completed jobs in a good and timely fashion, he and his son (Juan Ortega Jr.) were awarded the Panama Canal contract. Sadly, just before the canal was completed, Juan Sr. died suddenly. His son stepped in to fill his father's role, and began yelling mercilessly at the workers to work! work! work! to finish the job; that they would need to dig hard to cross the strip of land. A tear rolled down the cheek of one of the older employees who had been quite close with Ortega Sr. He turned to his co-workers and said "Oh, will you listen to that good son! He's screaming it's a wide isthmus... just like the Juan I used to know!"
The horror! The horror! Now you've had a glimpse of the dark and hideous 'humor' secrets of my family. So Happy New Year indeed!
Apparently I wrote the notes shortly after waking up, and instead of doing my typical look out the bedroom window activity, I was facing the opposite direction, towards our bookcase. On the case are two pictures, one of Lian giving her valedictory speech at her high-school graduation, the other shows a smiling Daniel in 7th grade against a "laser beam" background that he chose himself for the portrait. My notes briefly described seeing the two photos, and went on to say "joys in my life. Really enjoy my kids. Advice to them..."
I don't know exactly what I intended to say about "joys in my life" at that time, and reading back through this blog I can see that I fortunately came to my senses and didn't try to set down some specious "Advice To My Children". But reading the few lines in the file had the effect of concretizing the memory of that moment. I could immediately recall how I felt, lying in bed, gazing at the images of Lian and Daniel, believing that I had -- if I was lucky -- about 24 months left to live.
I think to myself: that is the strong reality of memory. The string of remembered moments, the march of time partitioned into individual scenes, the fabrication of a life through discrete events. It seems so central to defining who we are. Maybe that's why I keep revisiting my recollections. I'm trying to figure it all out.
There is another side to this memory-izing business, though. Seeing the early text that brought the flood of recall is an example. Here's another -- I'm feeling about as normal as I ever have, and an expected side-effect is that I no longer have the constant "cancer... cancer..." murmuring inside. It still comes and goes, and for some reason it always recurs at one particular place. At the end of our street, when I turn onto the main road leading through Roosevelt, it seems that I almost always think "hey! I have multiple myeloma!" Why is that? Did I have an 'imprinting experience' in the past at that precise corner?
I wonder what this says about my memory-worshipping. Put a text in front of me, show me a picture, drive me through a specific patch of road and <poof!> instant reminiscence. It's just a mechanism, an arrangement of neurons set up by specific triggers. The central core of my being? A structural arrangement of proteins and moving ions.
Yet these arrangements point to real things, real happenings. There is something about lived experiences. Maybe it is just a memory machine, but when it kicks in I know: these are mine.
Like yesterday, for instance. We had a record-setting high temperature (in the 70's!), and a front was moving in with strong wind gusts. I stood looking out over our bare trees and brown ground, wondering at the display of winter life. I wondered how long I could "keep this all up", and then I wondered if it even mattered. Linear time as an illusion again, with this being a moment I could repeat. Then I wondered if my wondering had altered or possibly even destroyed something fundamental in the instance of being outside, standing in the wind, feeling the rare warmth of a January sun. But maybe that's the point.
But enough is enough. Three times in the past month or so we've had snow in our forecast, and instead we got cold, soggy rain. No magical transformation, just a reinforcement of the greys and muddy browns. Cold. Wet. Soggy. Last night we were to have received 3" or so of snow, a nice amount. Just to the north of us they did indeed get the snow. My sister in western Massachusetts got over a foot. Here, rain. Cold and wet.
Argle! (one of Daniel's words to express annoyance) To whom or to what can I direct my irritation? God? Physics? Chaos theory? The animating force of the Universe? This is a feeling familiar from a year ago, anger at the cancer that had grown in my bone marrow. The anger, the feeling of disbelief, the sense of unfairness, it all still occurs. Who/what can I blame? Oh you bad molecules! Oh you baaaad cells!
The dream had two parts. The first did have a nominal real-world component. It was primarily a feeling, but the feeling was somehow associated with looking into the kitchen drawer that holds our cutlery and thinking that it needed a partition inside. Imagine that 'feeling'... sheesh, even in the light of day it is hard to describe. We're just finishing a kitchen remodeling, perhaps it inspired an element of anticipation or a portion of newness in my dream. Hard to describe. I want to emphasize, though, that the kitchen-drawer aspect served more as a token to represent the emotional state. It was somehow timeless, divorced from any actual manifestation.
The second part is much easier to describe, but as a dream it was much more diffuse. The kitchen drawer/divider feeling morphed into a pure emotional brain-state, and it was wonderful. There was no place-referent in this part -- no kitchen, no drawer, no location or time at all. What I dreamed was the feeling that I have when I wake at the beginning of the Christmas holidays, when everyone is home and still in anticipation of the happy family times to come. The amazing thing about the dream was that I could just sit there and be in that state, no movement in time at all except for the delicious awareness of how excellent life can be.
News from last week -- I met with Dr. Harpel, and we decided to hold off on my stem-cell harvesting until the beginning of March. Partly because he wanted a bit more time off the Revlimid to allow the stem cells to mobilize from my bone marrow, and partly because time just seemed to stretch a little. I had planned to keep January relatively free for this, but it seemed to take a little longer to get all the appointments set, etc. My travel schedule in February would make it difficult to arrange the procedure. I need about two weeks clear. Argle (as Daniel and Lian would say). The happy news here again is that I'm not an 'at risk' patient that needs to have the harvest done quickly for a transplant. The urgency/priority isn't there, and this is a Good Thing. So in the meantime I'm still off the drugs, feeling about as normal as I probably would with no cancer. It's kind of strange. "Normal"?
The weather, the sky, the winter temperatures, even without the snow I'm reminded of life a year ago. I'm not writing here as much. I don't feel the necessity of compressing my life as rapidly as I can. Maybe this is riding on false hopes, but the urgency/priority isn't what it was here, either. I'm doing projects again, projects with an extended ending date. Another Good Thing.
And in a few minutes I'm leaving to go watch Daniel as the lead in his middle-school play, Groovy (a musical comedy based on the 60's, oh yeah!). What a guy! What a time! This is about the Best Thing for now. When kids are better than their parents, there is hope for the world. Or so it seems to me. Off I go!
Obviously a lot of memories, more fodder for the blog here. Driving over to Bloomington from Columbus on Thursday morning gave me an interesting dislocation/counterfactual experience. I was cruising through the hills of Brown County, beautiful even in end-of-January winter. I was reminded of the many times I had driven that same road, with the same light, the same "feel" in certain ways. What I remembered was the projected vision of my personal future that I had back in those high-school, teenage days. I had dreams of what might be, goals I intended to meet.
What was striking was how different actual life turned out to be. This wasn't a rueful recounting of unmet achievements or dashed dreams, because things were so utterly different than I imagined they would be. And different in wonderful ways. How could I have known what being a parent really meant? How could I have conceived of the depth of love that only grows after decades of shared experience? Life isn't what I thought it would be. It's a whole lot better, and better in ways that were totally unimaginable to a 35-year-ago me.
It occurred to me that probably the people who are most dissatisfied with life are those who fix too strongly on a specific future. I'm not saying that ambition should be abandoned, but that a slavish devotion to a particular and exclusive path to fulfillment can sabotage genuine joy. I'm not doing what I expected would be "successful" because "success" was much more ill-defined than I ever knew. It probably still is. For now, though, I'm happy. This is fun. This is good.
Returning from our little PGT "Midwestern Tour" last Monday evening, I was looking down from the jet on our approach to Newark. I had a familiar feeling, one that visits often while flying over populated areas. I see the houses, the streets, like a tiny model, but it is so obviously real. Then I realize that in each house, on each street live people. Every person has a past and a future, a life-story unfolding with pain and conflict, happiness and hope, dreams and desires. There are so many! How can all this exist? It seems so incomprehensible, in totality. And each one of us is a part of it. "it"?
Here are on-line links for the performances we did:
What I recall is the look of the light, the way the blue in the sky seemed. It was subtly different than the New Jersey sky-light in ways I can't describe. Perhaps it is the slightly altered slant of the sun, or (as Jill would tell me) the relative levels of particulate solids in the atmosphere, but as I step outside in Cincinnati or Columbus, I immediately know where I am.
Where I am is high-school, probably guilty because I am late going home for dinner or I hadn't completed some promised work (opting instead to work on music -- flaky musicians!). Along with the guilt, though, is a feeling of promise, a sense that the future holds infinite promise. The sky is wide open. Funny, I had to leave Indiana to realize that the sky is different in other places.
Again, I don't know why this memory-recounting seems so important. I just finished reading Douglas Hofstadter's new book I am a Strange Loop. Motivated (largely, I think) by his wife's untimely death from a brain tumor, he seeks to find a kind of 'extended life' through his notion of symbolic representation. Is that what I'm trying to do here? Live on somehow? Grasp at a tiny piece of immortality? Jeez. When I first started writing this blog, I predicted that I would be generating "self-centered, self-serving and maudlin texts." Here we are. I do enjoy the selfish pleasure of reliving these memories, though.
I'm in Charlottesville to do some presentations at the University of Virginia. Actually they seem nothing more than convenient excuses to spend time with excellent friends. This is a good life. Thanks, everyone!
I took the path through our woods over to the post office to get the mail in midafternoon. The snow had turned to a misty, icy rain. Almost every tree branch was spectacularly beautiful, shiny ice drops hanging from each point and pine-needle. I wished that I had brought my camera. But what would it have done? Preserve those bits of shimmering water in two dimensions? A lot of our technology, a lot of our work-effort seems aimed at capturing and freeze-drying phenomena, maintaining sounds and scenes in a perpetual, fixed state. I certainly do it: I write things down, I make music designed to remind, I take digital pictures and I put them here (or there).
As I walked through the path, I remembered earlier snow-journeys on the same path with Lian or Daniel behind me in a sled I was towing. We called them 'Yukon trips'. The thrill in their voices as they shouted "mush, daddy, mush!", the joy of experiencing the magic of snow as a fresh and new thing, the excitement of an unknown but familiar world -- these are the things we ought to contain. They vanish so quickly, even as you live them! Can a photo or a recording really preserve this essence? Sound, text and image, they can only point to the real stuff. And that's the best we can do.
So why do I keep on posting here? I do believe that this blog does serve an informational purpose -- there are friends who can check here to see how things are going. (Hi! All is well!) Given that not a whole lot is changing like it was a year ago, there isn't much really newsworthy to write, though. Instead I sit and type silly stories of remembrance and pretentious Observations About Life that have to be pretty boring to wade through. Especially if the point of reading this is to find if out if I'm living or dying.
Yet I still persist. Scanning through my past entries, it occurs to me that I'm continuing this for the same reason I write my music. The ultimate in self-indulgent selfishness: I'm doing this for me. I go back and read these things, I listen to my own compositions, and I remember what I was like. What life was like. For me. Maybe it helps me get a grasp on where I'm heading, or maybe it keeps me from feeling totally worthless and invisible -- I can see that, yes, I did do something, sometime. Even if that something is a vapid recounting of 'how blue the sky is!' or the creation of odd digital noises, I was the agent responsible for that pointless stuff. And I know it and can read it and can hear it. What happy recursion there is!
With that in mind, I'll continue to relate events and thoughts that
I figure I might want to re-experience in my future. Here's one:
Last November, Daniel decided to apply to the Biotech High School, one of the public 'magnet schools' established by the Monmouth County School Board for students with high academic aptitude. Although the school is open to any student entering high school in the County, only 75-80 students are accepted each year. Admission is highly competitive.
On the phone, Daniel shouted: "DADDY!!! I GOT INTO BIOTECH!!!!" The excitement in his voice, the wide smile I could hear... there are few greater experiences (if any) in life than sharing in the pure joy of your children. Lian yelling upstairs to me when she received her Brown University acceptance, now Daniel with Biotech High School. Yeah, 'it doesn't get better than this.'
It has been pretty slow going, and the music-generating algorithm/model I want to use as the base material was more difficult to construct than I anticipated. (Hey hey -- I just got through writing about how this blog was essentially letters to myself, and now here I am apologizing to me for being a lazy procrastinator and giving myself excuses for not writing as much. Kinda pathetic, huh.) When working on a new musical project or composition, there often seems to be a time when I'm ready to give up, figuring that a piece really isn't going to work as I had imagined. For some reason, I usually just slog on through until something starts to happen. Just this past week that something occurred with the model I was developing. After a few months of writing LISP code that produced fairly awful music, it started producing some intriguing output. Here's a short sample of how it sounds:
My schedule for the big stem-cell harvest and hoe-down is now set. They're going to start me on some drugs early next week (I think), then I return on March 11 for a 5-hour infusion of cytoxan (the stem-cell liberator! freedom now!). On March 14 I'll go in for a short appointment to have a catheter placed for the stem-cell collection. I'll then go back on the 19th for the collection itself (another 5 hours or so), with a possible additional collection on the 20th. The transplant coordinator (now there's a job title) said that occasionally the collection takes longer, but with my "excellent stats" they didn't anticipate anything going awry. I'm glad I have excellent stats. Lucky stats. Happy stats.
The truth of the matter is that I've felt pretty lousy the past few days. With the continual "cancer...cancer..." still buzzing in the background, every physical symptom, no matter how tiny, starts to seem like a Big Deal. I spent last weekend having a wonderful time with Terry and Gregory again doing our PGT thing for the 2008 Spark Festival of Electronic Music and Art. (Our lounge-act performance can be heard here.) Monday after returning I felt pretty low but figured it was just the letdown after seeing a lot of good friends, traveling, etc. By Tuesday, however, I was running a fever with the whole body-achey thing starting to take shape.
So I kind of freaked out again. The problem (as I imagined it) was that this would totally mess up the stem-cell harvest planned to start next Tuesday. I went to our local doctor, called Weill-Cornell, discovered that I didn't have incipient influenza (they have a test for that now!), and learned that this was probably a minor virus and reassured that it shouldn't derail anything. This was confirmed by blood work showing nothing abnormal.
The only thing derailed, then, was my sense of well-being. I still feel kind of rotten, but I'll survive. The stem-cell procedure will happen. One thing, though: When I was younger, I believed that you could make things better by somehow changing what you believed about those things; a variant of the power-of-positive-thinking line. Jill says this shifts the platitude from "everything will be ok" to "everything IS ok". Whatever... but I thought it could always work. In the face of real physical ailment, however, it starts to break down. When you are sick, you really are sick. You know what? Being sick sucks.
My mom sent me e-mail, in one of those late-winter storms that can sometimes strike, they now have almost twelve inches of snow on the ground. This is a picture she sent of our house:
I wish I could turn the rain to snow for my son. I wish I could restore health for my wife. I wish I could make life good for all my friends. I wish and I wish and I wish and I wish.
Because I have been off drugs for awhile now, I had forgotten how much they can knock you down. Yesterday I felt pretty tired, but today my bod felt like lead. I wasn't really sleepy, it's just that every movement seemed to take a real effort of will. Tomorrow I go in to have a temporary catheter placed in one of my veins in anticipation of the collection procedure next week. I guess they use a general anaesthetic during the process (fine with me!), so I'll probably be pretty dragged after that, too. Then I get to start my "low bacteria diet" and limit my contact with Other Humans. My immune system will be pretty trashed for awhile. Oh the things we do to our bodies. Poor old body! Hang in there!
I've been busy getting lots of programming/music done, too. More on that later. One more thing: while I was getting all infused on Tuesday, Dr. Pearse stopped by to ask if I would be willing to participate in a presentation to medical students about myeloma diagnosis and management. Oh yeah, I'll feel like a contributing member of society again. I told him I'd be happy to do it; I bet it will be interesting.
It's a measure of how pathetic I've become that I am resorting to such silly anthropomorphisms. "Bone-marrow houses"... c'mon. I used to do this when I was in grade school, and being sick at home usually meant reading in bed and watching shows on TV. Usually there was some B-movie WW II picture in the late morning, so I then imagined the feverish battles raging in my body as between the "Amedicines" and (of course) the "Germans". I think I was all primed for this imagining by a pamphlet I had read about tuberculosis, and how the TB bacillus could go hide in the 'calcified mountains' in lung tissue, re-emerging years later to wreak bodily havoc. I recall the pamphlet as having pictures of the TB germs with helmets on, indeed in the 'calcified mountains', with the good penicillin soldiers approaching in tanks. Oh, the metaphors we use...
The good news is that now I am sitting in the collection chair, and the centrifuge machine is happily processing my blood. Here's the whole story:
Last Friday I went to have my temporary catheter put into my upper right chest area. This is necessary because the blood flow required for the stem-cell harvest is more than can be achieved with a standard IV connection. I think I realized that the process was going to be a bit more intense than I imagined when I noticed that the catheter-placement team was about six or seven people. Yikes! And the technologies they used! Huge, massive machines (x-ray imaging for the catheter placement), lots of beeping stuff, and I was blissfully drifting along because of the pleasant hypno-sedative I was receiving (yet another machine).
The catheterization went very smoothly, but on the way home I had a touch of nausea (probably residual effects from the sedative). So I took an anti-nausea medication that the hospital had given me. Bad, bad idea. Unfortunately I had one of the 'rare side effects'. If you've ever had "restless leg syndrome", imagine that spread over your entire body. I became extremely agitated, started getting confused, the whole fun panoply of 'rare side effects' for this medicine. I called the hospital, and they said that things would subside, and just try to take it as easy as I could. It was not a fun weekend.
All eventually did subside, and I settled into a general feeling of blahness, sort of like I was coming down with a mild flu coupled with an overall 'leaden' feeling in my body. My white blood cell count totally tanked, and I had to be careful about exposure to other people, bacteria-laden food, etc. Generally not a good time.
I came in to have my catheter dressing changed on Monday morning and had a blood count done. I didn't expect that my body would be ready, but all seemed fine for starting to collect on Wednesday. By now my flu-coming-on feeling had been replaced with a flu-here feeling.
On Wednesday, however, my white blood count was actually lower than it had been on Monday. Arg! Double-arg! My schedule was now totally messed up, I was feeling low, and I had to keep on giving myself injections every night of the drug that would eventually get the stem-cells to come out of hiding. I was feeling down indeed.
Now it's Friday, and finally I had a high enough count to start the collection. With any luck it will only take today, but I'm not counting any chickens at this point. I have a relaxing 5-6 hours planned, and so far I haven't had any bad effects from the process. Go stem cells go!
We started work together in January, and we had a big presentation planned for this month. The presentation was structured around a performance by the talented percussionist Valerie Naranjo, and we were also able to rope two of Valerie's fellow-percussionists into the event (Barry Olsen and Benny Koonyevsky). I wrote an application that used both electrical spikes in brain-wave activity and the overall level of brain-wave activity to trigger and modify music events. These events were constructed from samples I recorded of Valerie's gyil, a wooden marimba-like instrument from Ghana. Dave and I also worked up some smaller examples using brain-waves to control virtual instruments I had created in my favorite RTcmix computer music language.
The amazing thing is that this all worked. It's like magic -- I remember the spookiness of it during the first rehearsal with the percussionists. They were able to trigger their instruments by imagining that they were playing them. Cool stuff! The sad thing about the project is that I'm missing the big presentation we had planned. The stem-cell harvest weirdness intervened, and my vulnerability to potential disease during the process coupled with being on the machines, etc. and my general bodily malaise precluded me from being present. Arg! They pre-sold 400 tickets to the event. Oh well -- this is the way life is for me. Fortunately I could rely on two of our tremendously talented grad students (Sam Pluta and Jeff Snyder) to be 'virtual brad' and do the presentation and run the software in my absence. The software was working well, too, so I suspect Dave and I may get more mileage out of this project in the future.
Once I finish this stem-cell nonsense, Jill had a great suggestion that
we all get away for awhile (Daniel is on spring break) and head
off the coast of Georgia. Jill and Daniel are already heading down
by car, and I will join them as soon as I finish the collection.
I'll be away from people, and can just relax, recover, relax.
Jill used to visit there when she was much younger. I
am really looking forward to this.
Lian will be facing choices soon, her graduation from Brown is only a few months away. I hope she can retain a lot of flexibility about her future, and not get 'locked in' to one way of imagining how life will be. I remember back in my early twenties, I had a strange Eno/Cageian approach to life-choices: sort of a 'let the randomness (always a theme for me) push you along' ethos, but with the caveat to remain flexible and adaptable enough to make the most of where you find yourself. I think Jill implicitly does this, and through very happy circumstance we flexed and adapted until we found each other. Had I closed down certain potentialities too early in my life, then no Lian... no Daniel... none of this. It would be different. My random-choices have worked well, for I have absolutely no regrets about the lives I've lived. And Jill, Lian, Daniel! Oh my!
I do trust my daughter to make these choices, but parents always worry. Her future is so promising! What a spectacular girl! I recall an incident from Lian's first day at nursery school, where she was interacting with a larger group of children for the first time. A small boy wanted to grab a toy from her, and her reaction remains one of my 'hot button' memories to this day. Instead of yielding the toy and crying, or engaging in a tug-and-fight for the item, Lian -- she was rather tall for her age -- simply stood up and raised the toy with one hand up over her head. Then she just stared at the kid trying to get it; he jumped for it a few times and eventually gave up and wandered away. She sat back down and played with the toy. That's our Lian.
Daniel had a tough week, but with a good ending. He came home early in the week in tears, and unfortunately it was one of the days when I wasn't there. I was up at Columbia, meeting with people and also staying over because of a Weill-Cornell appointment the next morning. He called on my cell phone, and the occasion of the sadness was that he didn't get a part in the school "one-act" plays for which he had auditioned. Dummies! Daniel has been the lead in several of the school plays during the past year, so I'm sure that it was time to give others a chance. But this knowledge didn't make Daniel feel better. However, later that night I called back to see how he was doing, and a remarkable shift had occurred. Instead of the depressive conversation I expected, Daniel said heartily "I'm doing fine, Dad!" I asked what had changed, and he said that he realized that it was silly to let other people control how he felt and dictate the kind of life he would lead. He decided that he was going to write his own play, or compose music, or read some favorite books; all the things he would not have had time to do if he were in rehearsals for the next month. Wow. What a guy. He's had several other reversals like this, and my heartfelt hope is that he can always find these wise turnarounds as he encounters the inevitable setbacks in life.
With Daniel I worry that he may have to absorb too much of the down-side of my myeloma adventure. This past week I was feeling pretty bad, and it can't be pleasant to come home from school every day to a Dad upstairs listening to 'wifty' music and pretending that life is all ok. I've tried hard to have fun with him when I can. but there have been days when I haven't been able to do this. I hope these don't become Daniel's burden. So far I think not, and I intend to keep it that way. I don't want him to worry about me when he's home. He doesn't have to do that.
So that's a dumpout of some stuff I've had in my mind for awhile. I'm sure it is intensely fascinating to everyone, everywhere (yes this is a sarcastic statement). What the heck though, maybe my kids will read it someday and think about their silly old Dad. And typing this into a text-editor is surely a fine way to spend time while watching the entire six liters of your life-blood travel through a centrifuge machine.
I don't mind it so much, although I think Daniel is a little worried about a Dad who resembles the character "Beetlejuice" right about now. I'm feeling a whole lot better, though, and the stem-cell collection (finally) went very well. As my hair falls down, it's as if it is taking the drugs with it, away from my body. Fall away, drift away.
We're (me/Jill/Daniel) on Jekyll Island now. It's very nice here, and fortunately not too crowded with people I can scare with my crypt-keeper hairstyle. I'm not sure when I'll get to post this on the blog, but I'm just relaxing in the sun for now and figured it would be good to write a bit.
Very nice here indeed. This morning we all woke up at sunrise -- Daniel is the leader of these early AM expeditions, by the way -- and did the short walk over to the beach. While Jill and Daniel searched for shells and sand-dollars, I sat and watched the sun appear on the horizon. It was one of those 'wifty times' again, but not like the drug-induced ones I had during the past year where I dissolve into the world. This is more: "here I am, just sitting here." It is very nice.
What's not a hoax is that I am now totally bald. Ooooh, self-image stuff. What strange creatures we are. I'll post a picture later, but for now here is one of my favorites from our Jekyll Island trip:
I met Bryce while we were both graduate students at Princeton. He was a musicologist and I was studying composition. He was one of the few musicology grad students at the time who took a composition seminar, and I (silly me!) attempted to participate in a graduate musicology class. We connected and actually did the 'Princeton thing', taking long walks around campus, discussing philosophy/music/religion/politics/whatever. Bryce now lives and works in Orem, Utah, just south of Salt Lake City, and I was able to take advantage of the 2008 Society of Electroacoustic Musicians-US (SEAMUS) conference held at the University of Utah to impose myself on his (and his wife Lysa's) hospitality.
It was wonderful. We hadn't seen each other in over ten years, and it was as if the conversation had only barely paused. We went walking (I wouldn't dare call it 'hiking' -- I'm not the young climber I used to be!) in the mountains near his house, and we jumped right into a rich discussion that kept spinning outward and outward. Bryce is terrific because he makes me feel like I have good things to say.
It would be stupid of me to try to relate any of what we discussed here, because most of it only had meaning for us. The remainder was probably banal and frivolous, but we sure enjoyed it. Two aspects of the visit are worth mentioning, though. The first is a 'parallel life' phenomenon: Bryce was also diagnosed with cancer a few years ago. Like me, he has been responding well to therapy and it seems that we may be able to continue our conversation into the future. The second is that this weekend was the occasion of the semiannual Latter Day Saint General Conference, and this was the first one in which the new President/Prophet of the Church addressed the members. Bryce's family and friends are Mormon (Bryce himself has a complicated relationship with the religion; it isn't appropriate for me to discuss it in this blog), and I was able to enjoy a fascinating insider/outsider perspective on this exposition of the faith. When confronted with a developed belief-system like the LDS Church, it helps to solidify my own. I think I still like Daniel's religion. Perhaps I'll write more about this later. Perhaps not.
At the SEAMUS Conference, Terry and I did our 'lounge band' act again, this time sans Gregory because of his work obligations. Our duo recordings and performance are here:
Belief in the future, however tenuous it may be, has generated a set of rational and irrational fears, though. Odd, I didn't have these so strongly before I became ill. Perhaps my pre-cancer concept of life was as hazy as my understanding of my own mortality. Or maybe the drugs have permanently altered my brain (I still rely heavily on "TODO" lists). Or maybe I'm now 51 years old and this is the way it is. In any case, I lie in bed at night and worry about Lian, about the choices she may be facing. I want her to choose wisely! I worry about Daniel and the scholastic pressures he feels. I want him to be happy! I worry about Jill and the incredible stresses she is enduring; her parents, me, her work. I wish I could take these all away, give her joy again! Even pragmatic concerns give way to wild speculation: the State of New Jersey renegotiated the employee health-care plan and we were required to switch from Oxford to Aetna. This should be no problem, but I find myself imagining a bill for $100,000 arriving in the mail.
I didn't used to be this way. Coincidentally, my friend and neighbor Jeff Ellentuck gave me a really nice birthday-event last week. His parents have season tickets to the City Opera of New York, and they were out-of-town for the performance of Leonard Bernstein's Candide. Jeff asked if I wanted to go, and we had an absolutely delightful evening in NYC last Thursday. I think prior to my myeloma/age/drugs, I probably was Dr. Pangloss. "Hey! Everything is ok! Life is beautiful! No worries! I use a lot of exclamation marks!"
Today was one of those sparkling spring days that make you realize why New Jersey has the motto 'the garden state'. It was a little on the cool side, but the bright sunshine lit up the daffodils, the purple myrtle, the flowering trees, the newly-green grass, all surrounded by a deep blue sky that seemed practically solid in its flawless color. I walked out back, hearing the springtime birds. Daniel was inside playing imagination games. I can almost believe again, like Voltaire's Pangloss (but without the irony), that this is the best of all possible worlds.
I catch my reflection in a window, or I see my shadow on the wall as I walk upstairs, and I wonder "who is that strange person?" I can spy it in the eyes of friends and neighbors I haven't seen lately, not pity or an aversion (chemotherapy is relatively prevalent in society now), but again the question "who is that strange person?"
The answer is obvious. I'm a person who has cancer. The irony of it is that the most conspicuous outward manifestation is happening when I'm feeling the most normal I've been in the past year. I tell people "I feel fine!", but I look like a refugee from a pharma experiment gone bad. Be sure, though, I certainly prefer this to the inverse situation.
It does bring up the mind/body thing again. Some more context: we've also been seeing a startling decline in the health of Jill's parents. Roy (my father-in-law) will be 89 years old in a few weeks. Age is rapidly overtaking both Jill's mother (Ruth) and Roy, rapidly in a way we haven't seen until now. What are these bodies we have, that they grow old and frail? How can this be reconciled with who we are, who I am? That's not me! That's not me!
I was standing in the kitchen a few days back, looking out through our windows to the glorious springtime of our back yard. I could imagine my body dissolving, whatever inner 'essence' of me just floating away into the luminous world. I wondered why I couldn't simply jettison my material frame, drop it and the cancer away, free to evaporate into an expanding universe.
Who would I be then? Who am I now? What makes me? This past weekend was Daniel's 14th birthday. Lian was home to help celebrate. The pure happiness of his birthday celebration with his friends, it brought to my mind the incredible and overwhelming physical joy of his birth, of Lian's birth. My sense of being truly alive during my wedding ceremony with Jill. The complete contentment at having all of us together here at home again.
So I stand in the kitchen, looking out at spring, and I realize that life is a concrete experience, with a body not just attached but an essential component. Mind and body are fused, and the sum of who we are reflects this fusion. Now that I am relatively healthy, this is what makes the future a bit scary again. Bodies deteriorate, through age or illness, but each one holds a lifetime of experience. I don't want to miss any of it! Perhaps my mind can indeed drift away from the corporeal connection, but what then?
Is this an excuse for not writing in this blog as much? Perhaps, or maybe it's that I don't have as much to say recently that fits the context of this space. This is probably a Good Thing, given that this is my "MM" blog. Certainly I do have much more to write, but it may have to wait. Wednesday I see Dr. Pearse again for the first time in several months. Next month will surely be a time of... something. Lian is graduating, spring is here, Daniel is happy, Jill's moving her parents. Yes life goes on.
Then there are the days like tody, when a springtime explosion of beauty can't be avoided. Here is the view from where I sit on our upper back porch as I type this:
Ok, ok, I have to confess: the 'wiftiness' has returned, although somewhat attenuated. I had my first "normal" visit with Dr. Pearse last week, and we decided to continue with the low-dose Revlimid. The amount I'm taking is really small, though, so I may be simply justifying a standard springtime feeling by blaming external chemicals. Whatever it is, it's not all that bad. I need to watch that it doesn't become an excuse for sheer laziness, however. It is so pleasant to drift along...
There is much I need to start writing again. Tonight is a big political night, hopefully Obama will clinch the Democratic nomination. Jill and I have been supporters of his candidacy from early on -- it's truly wonderful to be inspired about a potential future again. I've known this on a very personal level (indeed I do believe I have some kind of future now), and watching Obama do this for huge numbers of people is absolutely thrilling. So we'll see.
I also got together with Dan Trueman over the past weekend, in preparation for a concert we're doing in New York at a trendy-ish club called The Tank this Thursday. Dan's playing his hardanger fiddle, and I did the laptop fun-sounds again. Here are the recordings we made Saturday afternoon.
And what is this time? Today I was living a life of twenty-five years ago. My old friend Rick Thomas was in New York, so we had lunch together. Rick was my house-mate and business partner in Zounds Productions, certainly one of the biggest factors in getting me engaged with music and music technology. Rick kept the studio going while also serving (still does) on the Theater faculty at Purdue University. I left to go learn about digital audio.
He didn't recognize me at first, the lack of hair was a good disguise for someone expecting a 1980-era Brad. But within minutes we were both the same people we were in 1980, although we were talking about our contemporary lives. Bridges connecting time.
On the way home I was listening to music from that time of my life, playing the memory-games again. I knew again what it was like to be young in Reagan's America, the feeling of "futile possibility" as I described to Jill and friends Sharlene and Jeff at dinner earlier tonight. We could do anything, we could make millions, we could live the edgey-life, but none of it seemed to matter in a deep way. That was the point of it, that mattering as a way of being was overwrought, overdone, and melodramatically silly. "Life is so random!" we would laugh. We truly had no idea...
That intersection of our youth and the social/political/economic time, how can it be described? How can it translate to what our children may be experiencing now? We can't know, and they can't know us like we won't ever fully understand our own ancestors. I don't think it really repeats, the combinations are too many.
What am I saying here? That the hope inspired by someone like Barack Obama is real? That we can find a future for ourselves? Am I coming to terms with a possible personal future, or realizing that it is always just shadow and glass? There was a time when life seemed free, and the payment for that freedom seemed forever in the future. I can feel that freedom again, now, as I drift, but for entirely different reasons.
Possibly because life is slipping by so fast, even given a potential
cancer curtailment. This weekend we drive to Providence for
maybe the last time: Lian is graduating (proud dad -- with
honors!) on Sunday. Did I say life was 'slipping'? No, it's
careening. What a thrilling ride! I want it to stop! I want
it to go!
You enter into a ceremony marking a major life-shift (such as a graduation) expecting heightened emotions, and Lian's celebration was no exception. I can't identify a single predominant feeling, instead I bounced through a range of reactions.
There was fear -- anxiety about getting everyone together, meeting at the right place/right time (Brenda and her family drove down to meet us with my parents), concern about Lian (she was suffering from a bad head-cold and probably exhaustion from the lead-up to the event), and the ever-present worry about the future (I want a life of lightness and joy for my kids!). Related to the fear was an occasional burst of dejection about submerged family issues that occasionally resurface at times of intense togetherness.
But there was also a pervading happiness. My daughter, a Brown graduate! Seeing the joy on Daniel's face, sharing with Jill the vicarious pride in Lian's significant accomplishments, thrilled to just be there to witness this passage. The entire weekend was absolutely gorgeous, a stunning New England springtime display. It was reflective of the pure beauty that enveloped our little girl, now all grown-up and facing her own future.
It was from that flood of goodness that my final feeling sprang -- the overwhelming sense of hopefulness. Using the word "hope" has become almost a cliche among contemporary politicians, but the glorious promise and limitless future I imagined for Lian generated an expanding euphoria rooted deeply inside me. Oh my daughter, my son, my wife, my family! I wish for everyone, everywhere the chance to experience this kind of hope. The world would be better.
My sabbatical has inverted the usual rhythm of my academic life. Usually about this time in the year I'm relaxing, the spring semester is done and I have a span of several months to work on projects before the new term starts in September. But now I'm feeling the weeks dwindle, as I frantically try to finish all the work I promised myself I'd get done on leave. I'm making progress, but so slowly...
A heightened awareness of time is one of the effects of a mortal diagnosis that remains after you start accommodating to new circumstances. I simultaneously want to get things done! and enjoy every moment! We just returned from our town's sixth-grade graduation ceremony, a big event in tiny Roosevelt. We're going to dinner shortly to celebrate our friend Sharlene's birthday. Lian is returning from a hike in the Shenandoah National Park this evening. Daniel graduates eighth grade on Wednesday. More happenings to signal the passage of time. Enjoy every moment!
As our family ages, I notice how personal attitudes diverge. I don't believe any of our core values change, but the outward projection of them alters. How do I impress my daughter with how important our choice of fellow-travelers in life can be? How much do we shift and bend according to our accumulated situation? My son has developed strong convictions, ideas about fairness and equality that I admire. However, how do I show him how to temper his strong emotional investment in these beliefs with patience, understanding and tolerance?
It's especially difficult to demonstrate patience/tolerance/understanding when I find less and less of these in myself. Paradoxically my cancer-mortality realization seems to have made me more forgiving of the interpersonal nonsense encountered in academia and workplace life, but often less flexible with those I love most. I think to myself: "but I'm right!" and this is a very stupid thing to think.
I ask myself lately why I am writing this blog, to whom am I sending these words. It seems it is now my confessional, with the whole world potentially as priest. How odd.
I like the fact that our US Constitution was drafted "in order to form a more perfect union..." Not to form a perfect one, but to lay a framework for working towards one. Perfection, huh. I think it's the working-towards that attracts me; perfection itself seems boring. In my book-project, one of the chapters has a chord sequence I've been developing. With a computer, I can make the tuning of these chords as 'perfect' as I'd like. I've opted to leave them fairly loose, with a lot of imperfect variability. The relatively untuned sound captures more of what I'm trying to represent.
Right now there is a very slight rain falling outside. We sat around our outdoor chiminea with umbrellas for awhile. Fireflies are blinking randomly through the trees out back. Neighborhood fireworks are echoing from down the street. My family is together, celebrating independence. There may be a time and a place for perfection, but not here, not now. And I bet this will be a perfect memory.
Time: I was driving home from running a few errands today, and along the road I was imagining how it looked during autumn, the trees losing colorful leaves, and then during winter, spring. When I drive that very same road in the fall/winter/spring, I imagine it as it appeared today, peak of summer. Then I thought: It's summertime! Look at it now!" As I did, I noticed the deepening green of the trees, darker than they were even a week ago. There appeared a very subtle brownish-ness around the tops, presaging the colder weather to come. So there I was, immediately whisked again into the give-and-take of time. Will some things ever spiral away?
Live in the past, live in the future, and next week my daughter leaves for Seattle, her new life.
Here are some pictures of us all in St. Louis and Indiana, several weeks ago: Wood Lake Camp 2008
But these happenings are good. Daniel loves that summer camp, and Lian is moving into her new future. Already she has looked at eight different apartments, life goes...
As I watched her make her way through Newark Airport security, I began to think back through moments we have shared. I could recount them here, but history is so much more than a list of events. We lived through these times together. My intense focus on memory in a lot of this blog is a probably an attempt to recapture those lived experiences. Time: the piling-on of these experienced moments? Is that what 'observation' is, in the sense that we bring on our reality through observing? Memory: the trace of the world as it is? I want it over and over again. But I also want more -- the new 'observations' of Lian and Daniel as they continue to grow, the additional times with family, with life. It has been an amazing adventure so far, at least from my own egocentric personal participant-observatory.
So far, so good for continuance. Today marks the one-year anniversary of my cancer going into remission. Like I said above, though, I also want more. Hey, I'm a selfish guy. I wrote "yay!" a lot in that blog-posting a year ago, so I'll echo that again now: Yay!