Tuesday, May 12, 2020

A temporary voyage in the same boat

2020 is shaping up to be an interesting year, huh.

I haven't updated this blog since last August, mostly because blogging doesn't seem like much of a thing anymore, but lately because nothing is happening. The band hasn't rehearsed since everyone was advised to go into hiding. We have no gigs. No one has any gigs in the traditional sense. We're not set up to perform virtually. Setting us up to perform virtually seems like something I ought to look into, but between paid work (which I thankfully still have because I've freelanced since 2011), caregiving duties, and attempting to obtain basic necessities without ever leaving the house because I live with someone who's immunocompromised, I'm stretched kind of thin as it is.

Are we having fun yet?
Me on the first errand that's required my physical presence since late March. I tilted the camera to symbolize the askew-ness of the world. This is literally as much creativity as I can manage right now.

So why the new post? I glanced at my computer clock to see what time it was and noticed the date: May 12. ME/CFS Awareness Day. The thing I blogged about even when I stopped blogging about everything else.

In the past I've explained what ME/CFS is. (tl;dr: It's a disease where you hurt all the time, feel really sick, experience crushing exhaustion, and often die long before you should). I've encouraged readers to kick in some money to discover a cure. I've talked about why raising awareness about the disease is important and linked to articles on what we're doing to raise it. This time I'm going to relate something somebody said during a meeting with local #MEAction members after the pandemic hit.

The meeting was virtual, of course, but we didn't teleconference because of coronavirus-related self-isolation. We teleconferenced because most of the members have ME/CFS and are too sick to leave the house. Instead of starting with official advocacy business, we took turns talking about how our lives were going in the midst of all the chaos. One woman said she was doing pretty okay, actually. Her entire life had already consisted of staying at home, shut away from the world. Now, at least temporarily, everyone else was in the same boat. She didn't want other people to suffer. She just enjoyed feeling, for once, like she wasn't the only person who couldn't go outside, couldn't contribute to society, couldn't partake in the normal activities that most of us take for granted.

That about sums up Awareness 2020 for me: knowing that what's been chipping away at so many people's mental health on a temporary basis is just life for people with ME/CFS, except that people with ME/CFS also have to deal with chronic pain and possibly dying young.

Oh, and research suggests that the surge in covid-19 cases could lead to a greater number of people who have chronic illnesses, including ME/CFS.

Stay safe, everyone. If you're healthy, it's good to become aware of what ME/CFS is by reading posts like these. You don't want to become aware by getting it yourself.

Thursday, August 8, 2019

Severe ME Day

May 12 was ME/CFS Awareness Day, which I failed to write about because I've been terrible about blogging this year. There were #MillionsMissing events all over the world to highlight how patients have been missing from their own lives because they suffer from a disease that makes them too sick to work, too sick to socialize, and in some cases, ultimately too sick to survive.

Tucson's #MillionsMissing event happened on Saturday, May 11, at Monterey Court.

Sonya Heller Ivey talked about her own experiences with the disease. She's recovered to the extent that she can occasionally leave the house, but she had to sit to speak.

Amber Frame organized the event for the second year in a row. She has a family member with the disease.

Mayor Jonathan Rothschild said a few words, also for the second year in a row.

And Cinder Bridge provided the tunes. (Thanks to Nancy Biggins for the photo.)

So that was ME/CFS Awareness day. Today is Severe ME Day, which honors the most severely affected people. Patients with severe ME often spend their days in darkened rooms so that they can't be hurt by light, sound, or touch. They may not be able to stand, dress themselves, bathe themselves ...

Severe ME Day is a good day to turn awareness into action and donate to the Open Medicine Foundation, whose mission is to find a cure, and #MEAction, which educates the population about the disease and advocates for individuals who have it.

Saturday, May 12, 2018

Together We Act 2018: A #MillionsMissing Event

For many years now, May 12 has informally been designated as awareness day for myalgic encephalomyelitis, aka "chronic fatigue syndrome," a devastating neuroimmune disease that involves debilitating pain, cognitive impairment, crushing exhaustion, and a host of other symptoms. As of this particular May 12, the date will officially become ME/CFS Awareness Day in Tucson, Arizona. Mayor Jonathan Rothschild will read the proclamation this afternoon during Together We Act, an event geared toward (obviously) promoting awareness, and also toward raising money for research into ME.

If you're in the Tucson area, you should come. The event is at Monterey Court (505 W. Miracle Mile), goes from 1 to 3 p.m. and features ...
  • Stand-up comics
  • The aforementioned proclamation by Mayor Rothschild
  • Music by Cinder Bridge (that's us!)

Yay! See you there.

Friday, May 12, 2017

ME/CFS Awareness Day 2017

ME/CFS AwarenessME/CFS is a chronic disease that involves debilitating pain, cognitive impairment, crushing exhaustion, and a host of other nasty symptoms. Sufferers also experience post-exertional morbidity, which means they feel worse following even light exertion and require an extended recovery period. Many people with ME/CFS are housebound or bedbound.

Despite the severity of the disease, far too many people dismiss "chronic fatigue syndrome" as hypochondria or malingering. It's neither.

There is no cure. There isn't much in the way of treatment.

But there has been some progress of late.

Good research

The Open Medicine Foundation is conducting desperately needed research on the disease. In a study published in fall 2016, they found evidence that patients have a metabolic signature similar to animals in hibernation. You can donate to the OMF here.

Pushback on bad research

A deeply flawed study from a few years ago claimed that ME/CFS patients could be helped by exercising. They can't. Exercise is harmful to ME/CFS patients. The study gained traction despite complaints from sufferers who called out the study's obvious methodological problems. But within the past year, David Tuller published a series called Trial by Error that went into great (great great) detail about said methodological problems. The scientific community finally started paying attention. While the flawed paper hasn't been retracted yet, subsequent activity has forced the researchers to release the data so that others can examine it.

If you don't have time to read all of Trial by Error, this New York Times piece by David Tuller and Julie Rehmeyer will fill you in.

For more details on ME/CFS 101, try this handy FAQ.

And seriously, please donate to the Open Medicine Foundation.

Monday, March 27, 2017

Eric Hansen

Someone called me out on "Where's your gratitude?" it's there, it's just pissed off."
—Eric Hansen, from a fundraiser update

It seems like half of my scant posts lately have been about musicians who have recently died. This is the one I didn't want to write.

Eric Hansen was my second vocal coach. After my first teacher showed me how to sing forcefully, Eric taught me how to dial it down. A songwriter himself, he often had suggestions about how I might change my lyrics. I don't think I took a single suggestion, but it always kind of delighted me that he offered them so freely—I knew I could trust him to be honest.

When my life transitioned into something more difficult, a while after he'd stopped being able to give lessons, he invited me to lunch and offered support. He told me to take care of myself.

Eric had a congenital lung disease called alpha-1 antitrypsin deficiency. Four years ago he got a double lung transplant and a shot at a normal life. After treatments, he could sing again.

Last year, his lungs started going into rejection. This year they told him they couldn't put him on the donor list again. Today he died.

I'm grateful that he got a few more good years in. I'm grateful that, shortly after he discovered his donated lungs were in rejection, I got to see him at last year's Tucson Folk Festival, hug him, and listen to him perform one last time.

The gratitude is there. It's just really, really pissed off right now.

Now please go sign your damn donor card if you haven't done it already.

Monday, February 13, 2017

"Can I start again?"

I was seven the first time I ever performed in front of a live audience. My piano teacher had gathered his students and their parents together at his house for an annual piano recital, as piano teachers do. I'd been taking lessons for about a year. While I don't remember being particularly nervous, the excitement of the situation must've gotten to me, because I completely forgot the notes a few measures in.

"Can I start again?" I asked.

I could, I did, and I made it all the way through. It didn't occur to me that this might be something to be embarrassed about until years later, when my parents recounted the story.

The second time it happened was at an open mic, a year or so before Ron the Drummer and I met. I got through one verse of my song "Honky-Tonk Piano" and blanked on the lyrics.

"I forgot the words!" I said cheerfully. Then I started over.

By then I understood that performers were supposed to gut their way through a song no matter what. I was a little chagrined, even if I didn't show it. Sadly, I didn't have Ella Fitzgerald's genius for vocal improvisation, and there was nothing I could do but stop. The crowd was friendly and forgiving, though, and the second go went fine.

The third time was in the early days of Cinder Bridge. I played the opening chords of Moths in Search of the Moon, opened my mouth to sing, and nothing came out but hacking and coughing. We stopped. Ron procured something with honey in it for me. We started again and got through it with no problems. We were playing at a Borders Books & Music—total atmosphere gig—so there's a good chance that a lot of the audience didn't even notice.

Those are all the times. I remember every one.

Sunday during the Grammys, it happened to Adele. She was doing a George Michael tribute, sang kinda flat, and stopped because she believed that Michael, whom she'd known and admired, deserved better. Although Adele's kinda-flat sounded better than most mere mortals' in-tune, her do-over was a lot better than the first try.

Some people are apparently complaining about her lack of professionalism. Whatever. I find it comforting when a mega-talent like Adele has a human moment like that. I think she did her friend proud.

Saturday, December 31, 2016

From the desk of 2016

Dear everybody,

It's been a long year, and many of you will be glad to see my back come January. Which is understandable, I suppose. A lot of unpleasant things have happened in our time together. But before I shuffle off, I'd like to make a humble request:

Please stop blaming me for frickin' everything.

I mean, David Bowie. I get it. He was beloved and brilliant and it never occurred to you that he was capable of dying. Sadly for all of us, however, rock stardom doesn't confer immortality. Bowie battled cancer for 18 months. I had to fight 2015 to get him. If I'd lost and he died 11 days sooner, would that have made you happier?

Of course, it isn't just Bowie's death you blame me for. Many others followed. I promise you, it wasn't because I enjoyed the carnage. There was a reason every time. Bowie: liver cancer. Alan Rickman: pancreatic cancer. Prince: prescription drug overdose. Muhammad Ali: Parkinson's disease. Carrie Fisher: heart failure. I could go on, but you get the picture.

Or maybe not. Because in addition to shaking your fists over people who in theory should've had many good years ahead of them, I've seen you cursing me out for Harper Lee (89), Gene Wilder (83), Leonard Cohen (82), Florence Henderson (82), Debbie Reynolds (84), and John Glenn (95).

Think about that last one for a second. Ninety. Five. Years. Old.

People haven't been dying more under my watch. People YOU KNOW OF have been dying more, because they've gotten to the age where that's the thing to do. You think I was bad? From the perspective of everyone who's old enough to be aware of those who are getting up there, every year after me is going to be worse.

Then there's politics. A significant number of you are angry with me because of the election. If you're one of them, I'd like to refer you back to a recent predecessor of mine, 2000. Remember when your guy didn't become president after winning the popular vote? Remember how you complained about how stupid the Electoral College is? It's been 16 years. What have you done about that since then besides make snarky posts on Facebook?

Stop blaming me. It doesn't do you any good. And it hurts my feelings.

That said, I hope 2017 treats you better. Just understand that it's at least partially on you to make that happen. Don't wait too long before you do. As you may have noticed lately, life is short.

Happy New Year.