Urgency

Imagine the following scenario.

You're 47 years old, reasonably healthy. One day you get a bad case of the flu and you don't recover. You're in serious pain all the time. You have so little energy that getting to the bathroom and back wipes you out completely.

You go to the doctor. She runs a bunch of tests and diagnoses you with a form of cancer that tends to strike people around your age. Then she tells you the bad news: you have six months to live.

The prognosis gives you enough time to say your goodbyes and, with a lot of help, to get your affairs in order. Unfortunately, your quality of life isn't very high. Most of the time you feel miserable. You die six and a half months later, a few weeks shy of your 48th birthday.

Now imagine a different scenario. You're 22 years old, reasonably healthy. One day you get a bad case of the flu and you don't recover. Symptoms are the same as in scenario #1. You go to many doctors until, a few years later, one finally discovers that you have ME/CFS.

Even with a diagnosis, there's not much anyone can do for you. You go on disability because you're too sick to work and eke out the best existence you can.

You die of cancer just a few weeks shy of your 48th birthday.

* * *

Quiz time. Which disease is likely to get more attention and funding?

My guess, and probably yours, is the first one. It makes sense, right? We have to find a cure for that disease right away. It kills its victims within months. The clock is ticking!

And this is part of ME/CFS's PR problem. ME/CFS can kill people, but it does so more slowly, and more stealthfully. A 2006 study by Jason et al found:

The median age of death for cancer in the United States is 72 (Reis et al., 2003, versus an average age of 47.8 for the CFS sample), the average age of death for suicide in the United States is 48 (Centers for Disease Control, 2003, versus an average age of 39.3 for the CFS sample), and the average age of heart failure is 83.1 (CDC, 2003, versus an average age of 58.7 years for the CFS sample). What this suggests is that those from this memorial list who did die of cancer, suicide, and heart failure were considerable younger than what would have been expected from the general population ...

The full paper is here.

If we had to choose, most of us would rather be victim #1 than victim #2.

* * *

Today is the last day of ME/CFS Awareness Month. It has been rewarding to raise awareness about ME/CFS, but I'll be honest with you. I'm tired of raising awareness. I want to skip to the part where everybody is already freaking aware so we can concentrate on raising MONEY.

This disease gets less funding than just about any other, and it isn't going to cure itself.

The clock is ticking.

Do something.

* * *

The Whittemore Peterson Institute conducts research on ME/CFS and other neuro-immune diseases. As yet it receives no federal funding. To support them, go to wpinstitute.org and click the Donate button.

Brainstorming

(Continued from last post.)

Brainstorming.

BRAINSTORMING.

Clock alarm declares a brand new morning
I lie awake brainstorming
How I will use the day

They said I could never do it. They thought me mad, MAD, but I showed them all. Now my song and I will RULE THE WORLD.

Ahem. Anyway.

So, yeah, I finally found a rhyme. The new line doesn't roll off the tongue as easily as the old one, but I like that I've worked the word "I" in there. (Or "I'm." I may substitute "I'm half awake, brainstorming." We'll see.) I figure I've at least broken even.

This is not an exemplary turn of phrase. It doesn't break new ground or present some brilliant new insight. It does, however, allow me to keep "Clock alarm declares a brand new morning," which sounds more poetical than I usually manage for setting-the-scene passages like these.

And it only took two days.

This is the point where I decide not to think about the songwriters I've known who could write an entire song in the car on the way to the bank.

Rhyme redundancy

After much searching and scraping, I think of a pretty good first line for my latest song. Shakespeare it isn't, but it sets the scene and scans perfectly: Clock alarm declares a brand new morning.

Great. Now all I need is an appropriate rhyme for morning.

Warning?

Oh, god no. Everybody rhymes morning with warning. Google it if you don't believe me. It is a rhyme cliche. Unless it's the only way to express exactly what I mean—and it isn't this time around—I'm not going there.

Okay, what then?

Very few words match up perfectly with orning. Adorning. Scorning. Those don't fit. So I try slant rhymes. Hmmm, forming. I could make that work.

Clock alarm declares a brand new morning
Hazy plans are forming
On how to use the day

Cool. But something nags at me. It's too familiar somehow. Have I done this before?

Eventually I do a quick search through my folder o' lyrics. Sure enough, it turns up in a song I wrote in 2004, "Night People":

Restless, I made my way down to the grocery store
2 in the morning
To claim a few treasures
That waited for me on the shelves
Riding my cart like a scooter
I saw that the path was clear
And no lines were forming
Checkout girl smiled at me
We had the place to ourselves^*

So now what? Should I really care that I've used this rhyme before? I run the problem past my boyfriend. He thinks that because it's an imperfect rhyme anyway, yes, I should care. Then he suggests "suborning." Sigh.

I'd like to avoid repeating myself, but I've boxed myself in. With lines already written above and below the "forming" part, whatever I substitute has to have a fairly specific meaning. If it doesn't, I have to recast everything else, and I like everything else the way it is.

I shall think on it some more.

Sometimes it sucks to have standards.

* * *

* Yeah, I know. Selves/shelves is even more of a cliche than morning/warning. What can I say? Very little else rhymes with those words. That's why you see the pairing so often.

Who told you that you couldn't play?

Today's offering is a poem from Shay, aka Fireblossom, who graciously let me repost it here. It reminds me of what creativity was like before I knew there were standards by which I was supposed to judge the results.


Starling


Odd and sweet little creature that you are,

Who told you that you couldn't play?

Who dares to shush you, little spirit? It's criminal is what it is.

Nobody died and made them sheriff.



So bang away.

Even the vainest singers began by screeching for worms,

Bald and absurd,

Hardly birds at all, just bold little balls of noise;

But they knew, as you should too,

That there are only so many beats to a bar or to a heart,

And every one of them drips with the sacred.



Small and daring,

You have no idea how much I admire you.

Keys white and black are like stars in the night, and you can touch them all, even now,

Though you can hardly reach the peanut butter

Or the door knob.

Come, I'll share with you all that I have learned.

It is not much,

Only this:



Keep singing, and just as the days appear and then fade, over and over, year upon year,

Keep playing,

And damn the critics.

God will love you and you will love yourself,

As the cat does

And as I do,

Every time you start in with your irrepressible gorgeous noise.

---

Originally posted here.

Stages of songwriting

Lately, the writing of my songs has followed a similar pattern. It goes something like this:

1. The idea
   
   Hey, that's a great line/melody/concept/whatever. Let's explore this further!
   
   
2. Initial efforts
   
   One-stanza verses will probably work for this song. Here's a good rhyme for that first line I wrote.
   
   
3. Stumbling blocks and avoidance
   
   I don't know how to write my way out of the issue I'm having. I can't think of any more words. I'm bored. Let's do something else.
   
   
4. Long period of inactivity
   
   La la la la la.
   
   
5. Self-discipline
   
   Dammit, I don't care if you're not feeling inspired right now. We are going to MAKE ourselves think about this.
   
   
6. Slow regaining of interest and momentum
   
   I made a rhyme! Yay!
   
   
7. Total obsession
   
   What could go here? What could go here? What could go here? What could go here? What could go here? What could go here?
   
   
8. Completion
   
   Did I just finish this thing? Yeah, no blank spaces left. I wrote a song! Go me!

It's a process that mostly works, I suppose. I just need to eliminate step #4.

Speak of the devil

Sometime after we recorded Everybody Knows About Me, I sent a CD with that song and a few others to the U.S. Copyright Office for registration. I sent it FedEx to ensure that it wouldn't get lost. This was maybe 2006, 2007 at the latest.

I received the certificate of registration in the mail today.

Funny thing is, I'd just been talking with Ron about this a couple of days ago. I told him that I knew I'd sent the thing off, but I wasn't sure if they hadn't responded, or if I'd gotten something from them and simply forgotten. The latter seemed like the kind of thing I would do.

Nope. It just took them a few years to get round to it. Better late than never, I suppose.

Say it ain't so, Mozart

Aw. Turns out listening to Mozart won't make your kid smarter after all.

While disappointing, this bit of news does represent an opportunity. If Mozart doesn't make you more intelligent, perhaps some other music will. Like, say, Cinder Bridge music!

Maybe if we include crossword puzzle inserts with our CDs ...

24 years

Over the past few weeks, we've been sending out links to the ME/CFS Phoenix Rising Video. Over the past few weeks, we've gotten some very powerful responses.

This is my favorite so far.

A friend of Ron the Drummer's found the video touching and educational. He had heard of "chronic fatigue syndrome," the name most commonly given to the disease on this little corner of the planet. But because he didn't know anyone who had it, he'd never considered how horrible it must be to live with.

He thought the video and its message were worth passing on. He sent the link to several people he knew, including a cousin he occasionally corresponded with in e-mail.

Turns out, unbeknownst to Ron's friend, the cousin had been living with ME/CFS for 24 years.

Wow. Just ... wow.

Granted, the guy hadn't seen his cousin since before he got sick. Many factors conspire to make ME/CFS an invisible illness even when long distance isn't involved. And they may not have had any serious conversations over e-mail. Still, 24 years? You'd think in 24 years, the cousin would have mentioned something so big just in passing.

But then, I'm coming at this from the perspective of a healthy person. Later on I relayed the story to the person who inspired "Everybody Knows About Me," the song used in the video. His reaction? "That doesn't surprise me. It doesn't surprise me a bit."

There are a lot of reasons the cousin might have chosen to keep that bit of information to himself. Maybe the people around him had been unsympathetic, even derisive. Maybe he was tired of defending himself. Maybe, with so little energy left over for basic necessities, he didn't want to waste it trying to explain things to people who might not understand.

24 years of silence—broken because of a six-minute music video.

KXCI: Broadcasting awareness

Big shoutout to 91.3 KXCI for doing its bit for the ME/CFS cause. At 3:30 today, DJ Cathy Rivers said a few words about ME/CFS Awareness Month, then played Everybody Knows About Me.

This is exactly why we need to support community radio.

ME/CFS Awareness Day: A video and a place to donate

ME/CFS Awareness Day is today. If you've been reading this blog regularly, you most likely know what ME/CFS is and why we need to raise awareness for it. If not, here's the short version.

Many people know ME/CFS by the name "chronic fatigue syndrome," and not coincidentally, many people think the disease just makes you really tired. Nope. In reality, the disease involves constant pain, crushing exhaustion, neurological problems, and early death.

This video explains it better than I do. Click play. I'll wait.

Feel like taking some action?

1. Donate to the Whittemore Peterson Institute for Neuro-Immune Disease.
   
   The Whittemore Peterson Institute discovered more about this disease in the past couple of years than the CDC has in over two decades. They have done this with no federal funding, and they need our support to continue. Donate, donate, donate.
   
   
2. Post the ME/CFS Phoenix Rising Video link on Facebook, Twitter, or wherever you hang out online: http://tinyurl.com/mecfsprv.
   
   Write a tagline in your status update that will make your friends curious enough to click and watch.
   
   
3. Send the ME/CFS Phoenix Rising Video link to people you know: http://tinyurl.com/mecfsprv.
   
   Which people? People who are sympathetic to the cause will appreciate it. People who think the disease is just tiredness or hypochondria need to see it even more. For best results, send the link to one friend at a time rather than blasting everyone in your mailing list at once. They're less likely to discard it if it's intended specifically for them.
   
   
4. Encourage people to donate to WPI after they've seen the video.

Thanks for listening. Now go out and spread the word.

Releasing of press

Today I sent out a bunch of press releases about the ME/CFS Phoenix Rising video for ME/CFS Awareness Day.

Tomorrow we will see if anyone bites.

Fingers crossed.

Invisible and sometimes hiding

ME/CFS Awareness Day is this coming Wednesday. To gear up, I'm writing a press release about the Phoenix Rising video, which features photos of people with the disease along with our song "Everybody Knows About Me." I'm soliciting quotes from people who have the disease about the video/song.

When I mentioned the quotes to somebody who has ME/CFS, she said I may not get much participation. She knew that many people didn't submit their pictures because they didn't want themselves on YouTube for an ME/CFS video. The disease is so often disparaged, a lot of patients don't even want to admit to having it.

That's not exactly news to anyone who's even passingly familiar with ME/CFS, but it's still depressing. If nothing else, I hope the video encourages other sufferers to come out.

Writing about songwriting

Tom Slatter over at Songwright is putting together a free ebook called 10 Tips for Songwriters. A variety of indie songwriters will contribute 10 tips each.

He's at the soliciting-for-contributions stage, and I've volunteered.

I had a momentary flash of doubt after signing up. Though I've learned a lot about the creative process and love to talk about it, I didn't know if my experiences will help people who don't think the same way I do.

For instance, I write very slowly, and I edit and rewrite as I go. By the time I have a full set of lyrics, they're generally the final version. As a result, I can't advise you on how to edit a sketchy first draft that you dashed off on your way to the grocery store. That's just not the way I work.

But the more I think about it, the more I realize it doesn't matter. Other contributors can help the people I can't, and vice versa.

I'm going to have as much fun reading the other songwriters' tips as I will compiling my own.

Another musician raises awareness for ME/CFS

A British rock musician by the name of Mark Emmins is recording a song and making a video for ME/CFS awareness. He's asking sufferers who are "wiling to let the world see them bedridden and ill" to send pictures of themselves to use in the video.

More info at Dancing with the Sandman. If you have ME/CFS and would like to participate, send your photos to markemmins@aol.com. Deadline is May 5. He wants to have a finished product to show the world by May 12, ME/CFS Awareness Day.

It's interesting synchronicity. His call for photos comes right on the heels of the Phoenix Rising video release. As far as I can tell, he wasn't aware that the first video existed.

I'm especially curious to hear the song, "Misunderstood." As an ME/CFS advocate, I think we need as many artists on the case as possible. As an artist on the case, I look forward to finding out how a fellow songwriter approached the same topic.

Folk and frybread

This year's Tucson Folk Festival experience was very different from the last one. Nothing about the festival changed. Just my approach to it.

Last year I cleared the entire weekend and saw as many of my favorite musicians as I could. Fun, but exhausting. This year I decided to relax a little.

The one must-see was Robyn Landis, because she's not from Tucson. If I didn't catch her, it might be another year before I got to hear her live again. So, an hour before her performance, I parked about a mile away from the festival (no point fighting people for parking spaces on such a nice day) and ambled in the direction of the festival (taking in an antique car show along the way).

Once on the grounds, I saw a couple of people I knew. ("Are you playing?" "Nah, not this time.") I met Ron the Drummer at Old Town Artisans maybe ten minutes before Robyn went on, and we listened to her together. Then I meandered around to where other people were playing.

I didn't carry a program. I didn't get the names of the groups I heard. I went into one of the vendor tents to say hi to the guy who peddles funky batik clothes and has sold me many shirts over the years. I walked up to a booth where people were handing out flyers for the legalization of marijuana. I signed up for their mailing list. At one point I bought some frybread and ate it while I listened.

Eventually I meandered back to the car, stopping at a couple of bookstores along the way.

I missed a few people I would have liked to see. My hope is that I'll be able to get to their shows individually. In the meantime, I'm glad I took it easy. Sometimes it's nice to just let the experience wash over you.