Make it stop

How can you stand it, I asked a grocery store staffer. It annoys me, and I only have to be here for a little while.

He shuddered and told me they started three days before Thanksgiving. It's driving him batty.

How can you stand it, I asked the guy at the register as he bagged my groceries.

He tried to stay focused, he said. He just ignored it the best he could, concentrated on what was in front of him.

You'd think, after establishing strict child labor laws and a five-day workweek, unions would be able to ban all-day Christmas music in supermarkets.

I can sort of understand blasting "White Christmas" at customers in other stores. We're potentially buying presents. Maybe the management figures it can whip us into a spending frenzy by reminding us of when we were kids and anxiously awaited Santa's arrival. Or something.

But supermarkets? People buy food because they need food. It's not a seasonal thing. As far as I know, people don't shop for gifts in the frozen aisle.

I can strategically avoid most retail until December 26. I cannot, however, stop eating.

It's going to be a long month.

Substance abuse, part II

Today has been the last full day I'll spend at the parental homestead before jetting back to Tucson. Know what I'm going to miss?

Well, the family, sure. It will be a while before I see them again.

Also the vast blocks of time where I'm free to do nothing at all.

But you know what else?

I'm going to miss orange juice.

My first vocal coach, during my first voice lesson, gave me a list of all the items I should not consume before singing in public: Sugar. Dairy products. Alcohol. Caffeine.

At first I thought this wouldn't pose a problem. I hardly ever drank alcohol. I never drank coffee. Avoiding sugar or dairy would be a pain because of chocolate, but I tried to do chocolate in moderation anyway. I could go without it from time to time.

Then it hit me. No sugar meant no orange juice. Which I consumed on a very regular basis—at least one of those cans of concentrate a day.

I'd had a perpetual dry cough for years. Was orange juice the reason?

I stopped buying it. The dry cough didn't disappear entirely, but it got dramatically better, very quickly.

So now, the only time I drink orange juice is when I'm on vacation. I can justify it then. It's not like a last-minute gig will pop up when 1,400 miles separates me from my keyboard, our speakers, and Ron the Drummer.

About 14 hours left to drink with impunity.

(Cough.)

Showing off for the nephew

"Aunt Susan!" Sammy says. "Show me how to do stuff on the piano."

The family has gathered at my parents' house for Thanksgiving week, and everyone speaks kid except me. They delight in entertaining my sister's boys, six-year-old Sam and four-year-old Ian. I'm the lone adult who doesn't talk to them in singsong tones. Someday when they're older, they'll appreciate this. I'll be the cool aunt. For the time being, I'm not that interesting.

But now I follow Sammy into the sunporch. Finally, something I can do.

He wants a lesson. Sort of. His current technique consists primarily of pressing most of his fingers and part of his hand onto random keys. I demonstrate playing one note at a time with one finger at a time. He hits random keys. I demonstrate experimenting with different notes to produce more pleasant chords. He hits random keys.

I follow his lead, not pushing the instructions on him. If he really wants to change what he's doing, he'll let me know.

Then he teaches me a game he plays with his dad.

The rules go like this. Sammy closes his eyes. I play a note. Sam opens his eyes and tries to hit the note I played. To narrow it down, I place my hands on each side of the note at a 90-degree angle, about an octave apart.

He gives this a couple tries. Then he plays a note for me while I cover my eyes. Before he can surround the note with his hands, I plink it. He sees it's the right one, and he finds this ... maybe not impressive, but possibly amusing. He's smiling, anyway.

I close my eyes again. He plays another note. Plink. Again. Plink. We repeat this once or twice until my parents tell us it's time for dinner.

Perfect pitch is generally not a skill I get to use in day-to-day life. Bet it's another ten years before anything like that happens again.

Lost and found

I have a love-hate relationship with Facebook

On the one hand, some of the features are confusing. The "conversation" is disjointed, as we're not all talking to the same people. The little apps for quizzes and games are annoying. And I can't figure out how to put music up on our band page, once again in production after my first attempt vanished into the ether.

On the other hand, it's the best lost and found I've encountered since Google was invented.

I've been paying some attention to my long-ignored Facebook account, adding contacts to it. In the process, it occurred to me to look for Megan and Vanessa, a couple of musicians I'd lost touch with. I found them instantly. In Megan's case, I discovered I'd been spelling her last name wrong all this time.

They friended me back within 24 hours. One of them sent a personal message saying she'd been thinking about me. I'd half wondered if she would even remember who I was.

They're not the only ones. I've reconnected with people from high school, grad school ... in some cases I hadn't known if they were alive or dead.

Funny thing is, I've been hearing buzz about how Facebook is so over because of its lack of exclusivity. If your grandmother is friending you, how cool can it be? For me, though, that's its biggest strength. I can go elsewhere to find the small groups of people who share my esoteric interests. Facebook is where I reconnect with friends I've known in real life.

It feels good to know that people from my past are still alive, still doing OK.

Detached observing

Just before I skipped town to hang with my family, I got my hands on some Cinder Bridge footage. Chet Gardiner of the Earthlingz set up a video camera and shot all the performers at the Single Payer Band Jam. He was nice enough to make us a DVD of our 50-minute segment.

Having seen the video, I wish we could get someone to record us every time we play out. Watching Ron and me as if I were a member of the audience is highly educational.

For instance, I've always disliked my head voice. (If you're unfamiliar with the jargon, head voice is the falsetto you sing when the notes are too high for your regular range.) Listening to myself here, I realized that it ... wasn't that bad. I've learned to better sing around my weaknesses.

There were moments in our playing where I thought, hmm, I could've done that better. I'll work on tightening that up. (Just me. Ron was awesome, as always.) Those were subtle, though -- not anything the audience would notice.

So I sing better than I thought. Unfortunately, I talk worse.

Don't get me wrong. My little speeches about ME/CFS and other invisible illnesses didn't go horribly. I said what I wanted to say. Just not as articulately or smoothly or entertainingly as I would have liked.

Entertainingly is important. If you're going to use the stage as a bully pulpit, you'd better develop a stage presence and keep people interested. A normal audience -- one that hadn't come to raise money for healthcare issues -- would have lost patience with me.

So I need to practice the speechifying. I also need some role models. If anybody knows of performers who are good at advocating for a particular cause, let me know. Maybe I can educate myself via YouTube.

Bank robbers and Facebook users

"Could you take off your hat, or turn it around?"

I looked up from my deposit slip. "Huh?"

"It's to prevent robberies," the teller said apologetically. "I know you've been coming in here for years, but it's the policy; we have to apply it to everyone. No hats, no dark glasses."

I pondered the implications as I stuffed my hat into my purse. Bank robbers concealed their identities with baseball caps and sunglasses? Really? I'd always assumed they wore a mask that covered their entire face. Granted, they'd probably attract a bit of attention while standing in line ...

According to the teller, a lot of people have recently robbed banks using the less stereotypical mode of disguise. "It's impossible to tell what a person looks like with a hat and dark glasses," she explained. "The cameras don't pick up anything. You can't see their eyes."

* * *

After declaring Myspace obsolete, People Who Think About Such Things are speculating that Facebook has become a victim of its own success. Now that everyone knows about it -- now that your grandmother can friend you, and probably will -- Facebook isn't cool anymore.

Under normal circumstances I'd find this bit of cultural news only mildly interesting. Unfortunately, it may be relevant to my life. I was finally getting around to constructing a band page for Facebook. (Actually started it a few weeks ago, but everything I did vanished, and the feature currently appears to be fried.) If our target audience stops using the site, we'll have to think of some other way to promote our gigs and sell our CD.

We're already on Twitter, but I don't use it very often. It's hard to engage in meaningful dialogue 140 characters at a time. While I don't feel all self-conscious about it like Norah Jones does, my tweets are nothing to write home about. They haven't resulted in any CD sales.

Neither, come to think of it, has this blog.

* * *

Because my brain is weird, the bank robbery thing got me thinking about the social media thing. I knew all along that getting the band noticed through social media would be difficult. How could it not? My friend DeppityBob describes it as being like "screaming 'I'M IMPORTANT!' in a sea of ADD people yelling the same thing."

Standing out from the crowd is nearly impossible. To achieve anonymity, all you need is a cap with a visor and a pair of cheap sunglasses.

Social media advice for Norah Jones

Like many artists these days, Norah Jones has a Twitter account. She hasn't posted anything on it, however. From Entertainment Daily:

“I stared at that web page for about two weeks, every few days. I feel like a total dope. Everything that I want to say sounds dorky, and everything that I don’t want to say sounds totally contrived.”

Hmmm ...


People following her: 4,371
People she's following: 1

For the Twitter-impaired, that means 4,371 users are reading her tweets (or would be if she had any), but she's only reading one user's tweets.

Norah Jones, if you're reading this (which you're not, but whatever), here's some free advice:

If you want to use Twitter like a giant megaphone, you're doing it wrong. The idea is to follow the fans who follow you and listen to them at least as much as you talk to them. Engage in some kind of dialogue ... inasmuch as you can have dialogue 140 characters at a time.

More to the point, this will cure your virtual stage fright forever. Once you see what most tweets look like, you will never worry about coming off dorky again.

Single Payer Now Band Jam video

Sound & Fury put together a little video of last week's Single Payer Band Jam. About five and a half minutes long, it starts off with some nice footage of the Earthlingz, followed by interviews with some of the organizers.

The video is available here.

If you're interested in what intelligent, articulate proponents of a single-payer system have to say, watch the whole thing. If you want to catch the Earthlingz rocking out, watch the first minute and a half. If you're desperate for scraps of anything involving Cinder Bridge (i.e., you are my mother), here's a breakdown:

1:43 - Cinder Bridge plays "Goodbye to You" (heard in the background during interview of Rick Graap, MD, of Single Payer Now)

2:31 - Cinder Bridge babbles to the audience (heard in the background during interview of Lee Stanfield of Single Payer Now)

3:50 - Cinder Bridge thanks the MC offstage (seen in the background while Dr. James Dumbauld speaks; I think this is when I apologized for making the poor guy try to pronounce "myalgic encephalomyelitis")

4:12 - Cinder Bridge introduces "Everything Changes," then plays a bit of it (heard in the background during Lee Stanfield interview)

4:47 - Cinder Bridge plays "Saturday Morning" (heard in the background during Rick Graap interview)

5:10 - Cinder Bridge's "Everything Changes" is played over the closing written statement -- yay!

So, you can hear us, and you can see us. Just not at the same time.

ME/CFS in the media: A snapshot of the turning tide?

The New York Times published a story Wednesday about what the Whittemore Peterson Institute's XMRV discovery means for ME/CFS research.

[T]he study pointed to a physical cause for an illness that the medical establishment had often snidely dismissed as psychosomatic. The research could not be ignored: it was published last month in Science, one of the world’s pickiest and most prestigious journals.

If you're even passingly aware of the history surrounding ME/CFS, the article won't say much that you didn't already know. Still, it's worth a click-through and a glance just for what it tells us about the media's perspective on this disease, and how it may be shifting.

First, the article itself is pretty sympathetic. Note the use of the word "snidely" in the above excerpt. Note the lack of an interview with some random psychiatrist who claims (without providing any evidence) that it's all in patients' heads. There is a one-line quote from William Reeves of the CDC to that effect, but in context he comes across as an idiot.

Second, check out the photo at the top. Notice anything unusual about the photo?

That's Andrea Whittemore-Goad, a longtime ME/CFS patient and the daughter of the woman who founded the Whittemore Peterson Institute. She's using a nasal cannula for oxygen.

I've looked at my fair share of newspaper stories about ME/CFS. When they include a visual, it's usually stock footage of someone who looks (a) tired, (b) depressed, or (c) tired and depressed. The NYT photo is the first mainstream media image I know of that suggests sufferers might actually have medical needs.

Better late than never.

Unpronounceable advocacy success!

Today's benefit concert went nicely, I think. Some highlights:

• The event was a lot more political than I originally thought it would be. Somebody I talked to mentioned the individual family that urgently needed medical care, but all the public statements were about getting the government to do the right thing and pass the right laws. The organizers were firmly in favor of a single-payer system.
  
  
• The weather was perfect -- in the 80s with a gentle breeze. Sometimes it's good to live in Tucson.
  
  
• The MC, reading off the prepared introduction for Cinder Bridge that I'd written, totally could not pronounce "myalgic encephalomyelitis." I told him beforehand that if he didn't think he could manage it, he could abbreviate to ME. He said he had to at least try.
  
  
• In our 50-minute slot, I devoted more time than usual to ME/CFS speechifying. I went into a little detail about the symptoms, and why the name "chronic fatigue syndrome" is so misleading. People seemed receptive. Of course, they were there to support a single-payer healthcare system, so I'd expect them to be.
  
  
• The audience seemed to like us. This is always a good thing, but particularly a relief given the advocacy element. When I put on my advocate hat, I fear we'll lack credibility if listeners think our music sucks.
  

So, all in all it went well. My only regret is that I forgot to tell the health insurance provider lightbulb joke. Next time ...

Unpronounceable advocacy

Cinder Bridge will join a bunch of other musicians today for a benefit at Old Town Artisans. The organizers will be taking donations to aid a family with urgent medical needs.

Last night we got e-mail from Ted Downing, a former state representative who's going to be co-MCing the event. He wanted us to write a few lines that he could read to introduce us. Here's what I came up with:

A hard-driving coffeehouse band, Cinder Bridge has been compared to Carole King, Billy Joel, Janis Joplin, and Tori Amos, none of whom sound anything alike. Cinder Bridge is the most talented band in the United States to play any songs relating to myalgic encephalomyelitis advocacy. It is also the ONLY band to play any songs relating to myalgic encephalomyelitis advocacy.

We usually don't mention the advocacy in our bios because only three of our songs relate to ME/other invisible illnesses. But hey, it's a healthcare-themed concert, so it works.

The fun part will be seeing if the MC can pronounce myalgic encephalomyelitis.

If you happen to be reading this in Tucson, come down and see us. The event kicks off at noon and goes until after 7 p.m. Cinder Bridge plays from 2:20 to 3:15. Old Town Artisans is at 201 N. Court Avenue.

ME/CFS unfiltered

A little over a week ago, Atlanta Unfiltered ran a brief story about the Centers for Disease Control and its role in ME/CFS research:

A possible research breakthrough — the discovery of a correlation between CFS and a retrovirus related to the AIDS virus — has fired up the medical community in recent weeks. “This is going to create an avalanche of subsequent studies,” Dr. William Schaffner, an infectious disease expert at Vanderbilt University, told the New York Times this month.

But will the Centers for Disease Control and Prevention play a role in that research? It hasn’t so far. Advocates have been pushing the Atlanta-based CDC for years to fund outside research into a possible viral explanation for the debilitating disease, which afflicts as many as 1 million Americans — maybe more.

The full article succinctly outlines the specific criticisms. If you're unfamiliar with the long saga of the CDC and ME/CFS, this will give you a quick grasp of the basics.

Something that struck me about the story was that I'd never seen it reported by the news media before. There exists a very well-researched book, a documentary, and numerous websites/blogs on the subject, but conventional newspapers and magazines haven't touched it.

Comments are overwhelmingly positive and still coming in. Many can be summarized, "Thanks for being the first to tell everybody else what we already know."

Now, here's what really got me.

One of the commenters suggested further avenues of investigation that Atlanta Filtered should pursue. Editor Jim Walls replied:

I plan to work on a few more stories (next priority would seem to be the blood supply), but I gotta make a living and have been distracted by work for which I am actually paid.

I had to read that a couple of times before the full meaning sunk in.

There’s a certain poetic symmetry at work here. After the CDC ignores and denies the true nature of ME/CFS for decades, they’re shown up by an institute that hasn’t existed long enough to have its own building. After the mainstream media fails to pick up on this story for decades, it’s scooped by a newspaper that can’t afford to pay its reporters.

A songwriting insight from Nick Hornby

When I first began songwriting seriously, I averaged a song per month. I struggled to wrap my mind around my topics. I struggled to piece the puzzles together. I emerged victorious.

Now it takes me three to four times longer to finish a song. One reason is obvious: I'm much busier these days. But that's not all.

A couple months ago, I put my finger on part of it. My earliest songs -- the autobiographical ones, anyway -- dealt with the past. Even though those past experiences still hit a nerve, I could analyze and make sense of them more easily than if they were consuming me right at that moment. Now my more personal songs tend to focus on situations of the moment, and they're more raw.

I had an aha moment about a related reason late last night, courtesy of novelist Nick Hornby.

Hornby is an excellent writer who also happens to be a big music enthusiast. His latest book, Juliet Naked, is (very broadly) about the strange relationships that fans have with artists, and vice versa.

The aha moment came with this passage, about a retired musician who's had writer's block for over two decades:

The truth about autobiographical songs, he realized, was that you had to make the present become the past, somehow: you had to take a feeling or a friend or a woman and turn whatever it was into something that was over, so that you could be definitive about it. You had to put it in a glass case and look at it and think about it until it gave up its meaning ...

Yeah.

God, yes. That's it.

If an experience is already over, it will stand still while you examine it. Pose for you. If you're still waiting to discover how it will all turn out, you have to guess.

And that's fine. It's just harder.

I suspect this knowledge won't make me a better or faster songwriter. But maybe I can forgive myself if it takes a while to pin down whatever it is I'm trying to say.