Good days, bad days, and invisibility

An invisible illness is one that isn't readily apparent to the people who don't have it. Two factors contribute to a disease's invisibility:

• No obvious signs. Sufferers don't use a wheelchair or crutches, don't exhibit hideous rashes or scarring, and generally don't "look sick."
  
  
• Symptoms go underground. Due to the illness, sufferers often can't leave the house. When they do, it's on a relatively good day, when they're feeling better. The friends and family who see them on those good days assume, wrongly, that the sick person always looks and functions that well.

As National Invisible Chronic Illness Awareness Week draws to a close, I'm posting "Good Days," a song I wrote about dealing with the misconceptions attached to a good days/bad days disease. Ron the Drummer and I recorded this live in his living room. You may need to turn the volume all the way up if you're listening on tiny laptop speakers.

Lyrics are below. Enjoy!




GOOD DAYS

Lyrics by Susan Wenger
Music by Susan Wenger & Ron Amistadi

When I got up late this morning
I could sense a change
Felt a little stronger
Could push a little longer
Accomplish something more

So I got dressed and fed myself
And hopped into the car
Drove it all the way down
To the nearest grocery store

You say I'm wasting my potential
Moving through this life too slow
You only see me on my good days
How are you to know

I've been losing so much daylight
Lying on the bed
Half awake and half asleep
Half alive, half dead

But now I walk among you all
Just breathing in the air
Grinning like a madman
On a double-doggie dare

You think I'm addicted to the drama
Playing all of this for show
You only see my on my good days
How are you to know


I could almost make believe
This feeling's here to stay
But I know from experience
My body's gonna pay

Well, none of your equations
Ever calculate the price
And I do not remember
Asking you for your advice

Today is gonna go down easy
Take it nice and take it slow
I am having me a good day
That's all you need to know

The artist versus the art

Cause out on the edge of darkness,
there rides a peace train
Oh peace train take this country,
come take me home again

—Cat Stevens, "Peace Train"

Salman Rushdie, indeed any writer who abuses the prophet or indeed any prophet under Islamic law, the sentence for that is actually death.

—Yusuf Islam, formerly known as Cat Stevens

Not long ago, a friend of mine proclaimed that he had no interest in listening to Sammy Hagar due to the man's abhorrent political beliefs. Apparently Hagar has stated something to the effect that he wouldn't kill someone who was threatening to murder his family, because nobody has the right to take anybody else's life under any circumstances.

(A Google search didn't turn up anything on this, so apologies to Hagar if I completely misrepresented whatever he actually believes.)

I thought back to that conversation today as I was choosing music to listen to while cooking. A scroll through the iPod brought me to Cake, Captain Beyond, Carole King, Cat Stevens ...

Cat Stevens. I hadn't heard him in a while. He'd fit my mood perfectly.

Hmm.

I hesitated. Pushed past the reservations. Selected a track from Mona Bone Jakon and pressed play.

Back in 1988, when Cat Stevens/Yusuf Islam made his infamous remarks about Salman Rushdie, I decided not to boycott his music. After all, I argued, he wrote a lot of it before he even adopted those beliefs. Besides, his songs were innocent. His songs didn't advocate killing people who disagreed with you.

Nevertheless, ever since then, I've felt a small amount of guilt when listening to him. My reasons are logical enough, but my motives aren't pure. In the end, I listen because his music brings me pleasure. I don't want to give it up.

And now that I write songs myself, I have another selfish motive: I don't want people to lose interest in my work if they become disillusioned with me.

For instance. Of everything we've put out there, the song that's probably garnered the most appreciation is "Everybody Knows About Me," about someone living with undiagnosed ME/CFS. In particular, people who have the disease themselves are happy that somebody wanted to stand up for them. It offers comfort and vindication.

I'm proud that I wrote "Everybody Knows About Me." I'm proud that other people have found solace in it. But day to day, just going about my life, I could never live up to the promise of that song. I'm not full of understanding and empathy every second of every waking hour.

In a sense, though, that's one of the reasons I want to write. My songs are self-contained pieces of expression that never change when I say something stupid or let somebody down. Once crafted, they exist outside of me.

So, I continue to groove on Cat Stevens. I continue to write.

I try not to feel like too much of a hypocrite.

Full transcript of the XMRV conference

... is here.

Big thanks to XMRV Global Action for doing this. The transcript is incredibly handy for those of us who aren't medical experts, and want to revisit segments to better understand them.

You seek what you want to seek

Day #2 of the XMRV Conference has come and gone. The good news, if you missed the live webcast, is that it's already up on YouTube. Definitely worth the watch if you have a keen interest in ME/CFS.

Mindy Kitei of CFS Central was there, and she asked the panel a couple of questions. Unfortunately, her second question somehow didn't make it onto the replay I've linked to. Fortunately, Lannie in the Lymelight has the missing clip (scroll down for the video). Mindy begins at 2:45:

My question is about the negative studies for CFS. And I understand, Dr. Coffin, you say, we still don't know. But having read these, and having reported on this disease since 1994, the negative studies—many of these patients in CFS do not have CFS in these studies. They have depression. And Dr. Leonard Jason has done studies on this. That the "empiric definition" that the CDC uses—38 percent are depressed. So you're not even dealing with a cohort that has the disease.

And I think that that's really important. Instead of saying that we don't know yet—which, we don't know yet. But there are patients who have been desperate for twenty, thirty, and forty years. And I understand, it's premature to do these drug trials, but we also have to call a spade a spade. And when you have a study, for instance, by the CDC, and they don't find it, OK. And then they want the RKI in Germany to confirm. RKI in Germany didn't find it in prostate cancer. Why not, Mr. Switzer, why not go to the Cleveland Clinic, who did find XMRV? You know, you seek what you want to seek. And I think it's important that we really see things as they are and not how we want them to be.

At this point she was cut off by one of the panelists, who insisted that nobody had any interest in deliberately obtaining negative results, and that they weren't there to talk about the CDC or about policy in Britain.

Which was kind of funny, given that she hadn't mentioned policy in Britain.

Hat tip to @OtisQuila for directing me to the clip.

Tune into CFS Central for updates.

ME/CFS happenings

Lots going on this week.

A new study found abnormalities in the white blood cells of kids with ME/CFS, suggesting they've been fighting off infection.

Professor Jill Belch, an expert in vascular medicine at Ninewells hospital in Dundee who led the latest research project, said: "What we've found are blood changes that suggest chronic inflammation.

"This is important because it's showing an abnormality that we might be able to devise a treatment for, but it's also important because some people do suggest that ME is a disease of the mind and here we are showing that it is a disease of the body."

Meanwhile, the Whittemore Peterson Institute and Cerus Corporation presented data today at the 1st International Workshop on XMRV demonstrating the efficacy of Cerus's INTERCEPT Blood System. This is good news for the blood supply—the INTERCEPT Blood System inactivates MLV-related viruses in donated blood.

Speaking of the 1st International Workshop on XMRV ... Day two, Wednesday, September 8, is apparently when they focus on ME/CFS. You can watch the event live, starting at 5:15 p.m. EST.

So, long time ...

Wow, I haven't posted to this thing since Tuesday. I suck.

I haven't meant to neglect the blog ... or you. It's just that there's nothing new to report. Ron the Drummer and I are still plugging away in preparation for the new album. The ME/CFS community is still grinning at the recent scientific progress. Everything's chugging along. But no stories I haven't told you already.

We'll endeavor to do something really noteworthy at today's rehearsal.