Composer, singer, multi-talented Louise Cloutier, is a remarkable woman for many reasons; one being that she dances with her disease: Ehlers-Danlos Syndrome. She is the Queen of "bouncing back," and she makes the best musical lemonade; goodness knows, she's not short of lemons.
Cloutier began singing her own songs at the age of 14 in the 1968 hippie coffee houses of Cambridge, Mass. "They were my people," she said. "Civil-rights activists, from labor organizers, to the Vietnam War, to Central American issues, to Women's Issues, and certainly gay issues. I did a lot of political performances.
"I was also singing a lot of Bessie Smith, and shortly after that I got involved in medieval music. I was studying theater music, and I wrote a musical when I was 16 in high school, that was what I wanted to do when I grew up. From theater music I got into jazz standards that used a lot of showtunes. So I went from swing, to bop to 'Out.' And from Out improv jazz, I went to John Cage."
"I was planning to go to my high school 10th reunion, then I got a call the night before. The woman said, 'What are you doing tomorrow?' I said, 'I'm going to my high school reunion.' She said, 'No, you're not, you're going to meet John Cage.' So I worked with him for a while, and that turned into other gigs in New York with other composers."
Cloutier moved to Chicago six years ago to write music for dance companies, and has since written a music portrait of a sculpture by Richard Hunt, and sang vocals for a video about Borneo by Barbara Sykes.
Less than a year ago, Cloutier was diagnosed with the disease Ehlers-Danlos Syndrome. "It's a congenital collagen defect," she explained. "There are different types, and I have a hyper-mobility type, where it's like my joints are connected with rubber bands and they fall apart easily. They dislocate."
Cloutier describes herself as Phoenix Incorporated, as she rises from the ashes of her diagnosis. "I was between the two poles of utter collapse and manic denial, leaning heavily toward the latter. My tendency as a workaholic is to throw myself into something, so I have to make myself take time to grieve and rage. It hasn't all been a negative thing, it's been a good thing too, because otherwise it would have seemed like the disease was just an affliction. Instead, given that I know a lot of people who have Ehlers-Danlos much, much worse than I do, splints on all fingers, in a wheelchair with multiple surgeries on many joints, I do not have it that bad. I figure that I've got just enough of it to get my life and my work in focus."
The end result of that focus is the CD Scent of a Burnt Rose: Songs For People In Recovery &/Or Living With a Chronic Illness, a diverse collection of songs using all the genres of music mentioned above, and more. The CD was born out of physical pain. "I did a show last spring with Carrie Hanson and Doug Stapleton, who is a local dancer. I was in so much pain at the time, my shoulder had partially dislocated and was stuck that way for four months, and by the time it freed up it was very stretched out. I was in so much pain that I could only rehearse in a lawn chair. I ended up canceling a bunch of out of town gigs, and so I thought if I can't perform or travel, then at least I can write and record. That's how the CD came about."
In the song "Touch of the Flame," Cloutier sings: "I'm not a saint, I'm not a victim/this is not a punishment, it's not a crown/it's merely a burden I've learned to carry/it's nothing more, though it changes everything.
"I am still me, perhaps just more so/and I think somehow life still would have found/some other way to purify me ( Alchemize me ) /if not by the touch of the flame."
"To sing something is to really be there," said Cloutier, explaining the therapeutic value of song. "To really flush it out and live it in vivid color, then you can come out the other side of it."
Always the altruist, Cloutier also made the CD to let other people with chronic illnesses know they are not alone. "When we've got a long-term illness there's this elephant sitting in the middle of the room, and what do we do about it? You either start to feel like you are the elephant or, at the other end of the scale, you might pretend that the elephant isn't there, but in order to live with something long term, some sort of peace has to be made with it, some sort of practical day-to-day agreement.
"In order to do that, you have to deal with the issues in a very honest way and to acknowledge it. Sometimes you want to laugh about it, sometimes you find spiritual meaning in it, and sometimes it's in the way, it's an irritation. Like I said, 'I'm not a saint, I'm not a victim,' but some days I am one or the other."
Cloutier also conducts workshops for people with HIV and other chronic illnesses. "It's a song circle, adapted from some of the songs from the CD, but in simple singalong form, as well as other songs. In the civil-rights movement, song made it possible for every individual to feel like they could make a difference, to belong to a greater whole, and to tap into a source of personal power and energy and hope.
"That's the intention of my workshops. It's certainly wonderful to share our stories, and that's certainly part of the workshop, but I think something very profound happens when everybody sings about it together; everybody in the group gets to discover that we all are healers, we all brave, and we all are wise. We can understand each other at a level that other people in our lives who haven't had the experience wouldn't understand."
Louise Cloutier performed songs from Scent of a Burnt Rose recently at Great Beast Theatre. For info about Louise Cloutier's workshops and performances: louise@burntrose.com or visit www.burntrose.com