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Archive for March, 2010

When I returned home from France in January 1981, the world had changed. I came home to a new house that was built during my two-year mission, my parents had separated, most friends from high school were away at college or married, and somehow I no longer knew how I fit in. I had a couple months to figure out what I would do before the next term started at the U. I found a campus job, and moved in to my grandmother’s house just below Foothill Drive, a tiny cinderblock structure that she lived alone in for decades. She was volunteering her time at the Washington, D.C. LDS temple at that time and needed someone to stay in her house, so my sister and I paid a very modest rent and lived close to campus.

By the time I left home in January 1979, my musical tastes were expanding into mildly adventurous places in the wake of the punk and new wave trends that took their time making it to Utah. Between 1979 and 1981, Salt Lake City developed an alternative music scene of sorts. The Police traveled through on their first tour of the U.S., with The Specials opening. Clubs in town started booking punk acts. The Cosmic Aeroplane (book and music store) was transitioning from a post-hippy vibe to a punk hangout. And a community radio station, KRCL, started broadcasting in late 1979 from a room above the Blue Mouse theater.

The Blue Mouse and The Cosmic Aeroplane, 1980s

(Steve Jerman, Flickr)

At some point in the spring of 1981, I discovered KRCL while scanning the FM radio dial. It was fascinating, and it was very different. Volunteer hosts played literally every kind of music. I was hooked into this culture of rebellion, and many Saturday evenings at Grandma’s house were just me with the lights down and a 1970’s console hi-fi radio cranked up. Saturday afternoons on KRCL were given over to “Smile Jamaica” (and they still are), which merged into a rockabilly (later ska) show, which gave way to the Saturday punkfest starting at 7:00: Jon Bray hosted 2 hours of pop-oriented new wave and punk, followed by Lori Mehan’s “Up Another Octave” from 9 to 11, which crashed through all kinds of avant-garde, pop, punk, no wave, atmospheric sounds. From 11 on, “Behind the Zion Curtain” was the all-punk roller coaster hosted by Brad Collins.

Lori’s show imprinted on me an amazing range of new music: Laurie Anderson’s “O Superman” and “From the Air,” Bauhaus’ “Bela Lugosi’s Dead,” and Tuxedomoon’s “Desire” will forever be associated in my mind with the glowing tube-radio dial in that old stereo. So many edgy, noisy bands filled the evenings: Gang of Four, Joy Division, the Slits, Devo, the Pop Group, the Raincoats, Cabaret Voltaire, Chrome, Liliput, U2, Killing Joke, Bush Tetras, Sonic Youth, the Cramps, Richard Hell, the Clash, the Go-Go’s, the Stranglers, the Suburban Lawns, Liquid Liquid, Siouxsie and the Banshees.  Lori preferred bands with women, and bands that stretched out beyond the two-minutes punk slams that made up Brad’s show.

That’s how I’d spend my Saturday evenings, in my own private little rebellion. I didn’t go out to clubs, although I’d occasionally venture out to live shows. Salt Lake didn’t produce  much in the way of leading-edge music, although I fondly remember 004, a great little ska band, and the way-out-there avant-garde collective Subminiature Basic: they did a chaotic summer evening show at the U’s Fine Arts building plaza that was broadcast live, and a brown-bag lunch noise assault at Exchange Place on 4th South and Main, taking reverb and tape loops to new heights, that had business people running for cover; most memorably, I remember a show in an old downtown building that was completely improvised and started with dark silence and a red laser light pointed at the heart of the lead singer, who gradually vocalized from a murmur to a full-throated scream as the music, noise, and lighting built incrementally. Watching those live shows was exhilarating, and was a good fit with my own searching for direction and something to call my own. Like most groups of the era, Subminiature Basic disbanded after about a year.

But that Saturday night vibe got me started down the road that led to my own radio shows after 1983, and writing music reviews for the national alternative music magazine, Option. The irony was that it started with a very private, very lonely sort of longing for rebellion. If I had to pick a song to represent that first year or two listening to KRCL, it would be this one:

I recently heard this for the first time in 29 years, and it personifies that awkward, angry, lonely, rebellious, and (in retrospect) very young attitude that seemed so right to me in 1981. The Au Pairs lasted for an album and a couple of singles, for the most part working over one basic funky-punk vibe. But their lead singer, Lesley Woods, had a dark tinge to her voice and a commanding presence, and “Diet” was their great exception, capturing the social criticism and tired existential angst that works so well for college kids. Well, it worked for me, anyway, the rebel who’d get up and go to church on Sunday morning.

Lesley Woods

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uncertainty

Rule #1 of living with cancer: learn to live with uncertainty.

(borrowed from new river academy's Flickr set)

The hard thing with explaining cancer to people is that they see it as a win/lose, one-way street, black/white experience. You’re sick, or you’re healthy. You are in remission, or you’re terminal. You’re giving up hope on treatment, or you’re going to fight this thing and Win! Win! Win! You’re up on top of the seesaw, or you’re hitting bottom.

Nobody looks at heart disease or diabetes or Parkinson’s quite the same. We’ve been conditioned to see Death looming whenever cancer is in the picture, and so things seem to get polarized. It scares us.

To quote the facilitator of my support group: “Cancer is a chronic illness that can be managed for years.” That’s a fact that doesn’t seem to register with most people.

I had a cheerful conversation with my sister-in-law on the weekend. She’s about three weeks into intensive treatment for lymphoma that went undiagnosed way too long. Last week she was in horrible shape. It wasn’t looking like any treatment would be worth it, because she couldn’t stay strong enough to endure the chemo. But then she was given a steroid to reduce inflammation in the brain, which brought back movement and verbal clarity and best of all, her naturally cheerful mood. Marinol brought back her appetite. Now she needs to build strength to try another, less harsh, chemo.

We talked about a lot of things, and of course we talked about uncertainty. Traumatic situations like this tend to narrow your focus down to the present moment. You are constantly on the alert for new test results, watching carefully to see if treatment works. You worry about the future, if you can spare the energy for that. But mostly you have to stay in the present moment, because if you go anywhere else you’re lost. It’s exhausting to have regrets for the past and to project your anxiety into the what-if’s of the future. The constant difficulty is the uncertainty: will the next biopsy show improvement? will the next scan show tumors regressing or spreading? will the next drug be tolerable or will it spin you into more problems?

So many cancer friends have told me how they have learned to adapt to uncertainty. For me, it’s like being able to put that anxiety into a bubble and let it hover just outside my present-moment thinking. Yes, there’s uncertainty there. It will be there whether or not I worry about it. When I get to a point that I have to make a decision, I’ll pop the bubble and deal with the anxiety. Then, after a decision is made, the anxiety fades and I move on to the next step: relief at an effective new treatment, or more decisions on how to manage symptoms or pain or whatever. Over time, the uncertainty will return, the anxiety will build, but again I’ll have to set it aside in the bubble until I can do something concrete.

I’ve just passed my three-year point with my diagnosis. I’ve had several effective treatments that have let me live happily, with no pain and few side effects. One treatment option is now losing effectiveness, so I’m working on the next step. I have no idea if my next treatment will be highly effective or not. Every person has a different experience with the same treatment.

Cue the uncertainty. And learn to let go.

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The last month has been really, really hard on many people I am close to.

My PSA numbers are rising again, which means my current hormonal therapy is no longer effective. I’m trying to get into a new drug trial but have to travel to Las Vegas for it. For the first time, I’m starting to feel little twinges in my bones. There’s a new seriousness to my cancer treatment.

My future sister-in-law, who has been living with an undiagnosed illness—believed to be lupus—for many months, was finally diagnosed accurately: lymphoma. She’s in the hospital with intensive chemo and new immune system therapies.

My wife’s nephew, a proud Marine serving in Afghanistan, was killed while escorting a prisoner.

It’s been a ridiculously bad time, the last few weeks. Family members on all sides are dealing with horrendous stress, with grief, with uncertainty. It brings so many uncomfortable moments into our interactions. While I completely appreciate how much others want to be helpful, we’re all just awkward humans trying to figure out what to say, what to do, how to help.

One of my favorite thoughts by the late Henri Nouwen showed up in my email the other day. It’s a fine reminder of how to be there for people.

Being with a friend in great pain is not easy. It makes us uncomfortable. We do not know what to do or what to say, and we worry about how to respond to what we hear. Our temptation is to say things that come more out of our own fear than out of our care for the person in pain. Sometimes we say things like “Well, you’re doing a lot better than yesterday,” or “You will soon be your old self again,” or “I’m sure you will get over this.” But often we know that what we’re saying is not true, and our friends know it too.

We do not have to play games with each other. We can simply say: “I am your friend, I am happy to be with you.” We can say that in words or with touch or with loving silence. Sometimes it is good to say: “You don’t have to talk. Just close your eyes. I am here with you, thinking of you, praying for you, loving you.”

Our family is missing Nigel terribly. The children spent time hiking with him in the summer, sledding with him in the winter, and saw him at so many family get-togethers. We saw him briefly last fall, but he was deployed before the holidays. We all assumed we’d see him again sometime this year. His funeral was last Saturday. It was terribly sad and very uplifting at the same time, as hundreds of neighbors and friends and family members gathered to honor him.

I wish I could travel to Chicago, but I’d probably be in the way at this point. Ed has been very conscious of what I’ve gone through in the last three years, and has consistently called and discussed treatment options and new research with me. Ironically, he’s now deep in the trauma of watching the woman he planned to marry last year suffer through cancer treatments. I don’t know that anything I could say would be helpful.

All these things should be overwhelming, but for whatever reason, I’m staying stable. Just sad, feeling the weight of mortality.

(sorry, can't remember where I found this photo...)

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