The good Sister Cleophas instructed me that confession is good for the soul. I believe that to be true. So I’ve decided to share a little personal bit of my recent journey with all of you, my dear friends, fans, fellow musicians and people who might be struggling with similar demons. To rip the mask off myself and let you in on what’s been going on with me for quite a while now.
There was a time when I could walk into a room and hear the whispers of people saying “oh, she’s really beautiful”. I moved freely in my own body, and had a strong sense of my sensual being. Now, I truly have shame around saying this. But this is significant. I have shame that it matters what I look like, when I’m supposed to know that beauty is something you earn. It comes from within. It is relative. It is sometimes given to you by the way others see you. I am certain that I am beautiful inside.
I am certain that I am a beautiful person. And I trust that some people still find me attractive in some way.
We’re taught not to value ourselves by how we look, but rather how we act, and the way we treat other people. I’m very inspired by the way I see the smallest beauty in the world. And it shames me to say, that I am not able to see it in myself outwardly. And that how I look should matter so much.
After all, I am not self absorbed to the exclusion of all else or anyone around me who might need comfort or companionship. I am highly empathetic. A great listener. I don’t turn situations into vehicles that become all about me. My narcissism is a very subtle appendage of my being an intuitive artist. So I don’t consider myself to be a flesh eating egotist that devours every moment as if it were food for my ego to be fed.
But I do crave a level of attention. I’d be disingenuous if I said that i didn’t care what people thought of my work, or how I look.This conflicting dichotomy is what I think makes me more optimistically harmless and reflexively unique from being a traditional Narcissist. Everyone is unique. I don’t hold myself up on a false pedestal. I just trust that I am my own person with my own variety of styles and ways of expressing them through my art as well as in my normal waking hours.
Still there is a certain pressure on performing artists, to have a “look” to be evocative, most usually qualified by their physical attributes. I never thought of myself as Drop Dead Gorgeous, or a Siren, but I certainly felt comfortable going out on stage and playing and singing with a sense of security that I had what it took to be noticed and admired.
Now, I have to say that I still love who I am as an artist, as a person, friend, human being.I don’t follow trends. I am totally out of the loop in terms of who’s big in the industry now, or what everyone else is listening to. I live by my instincts, I follow my own path, and if something doesn’t resonate with me, I abandon it. As an artist, part of that legacy is to inhabit the persona that is the most authentic expression of your instincts about yourself and the lens you see the world through. Then you thrust yourself out there and try and be as unselfconscious as possible. In fact it should come natural to forget yourself all the while you’re being conspicuous. It’s a form of acrobatics, to find the balance.
When I was beautiful, some people would hang on each word, each lyric like I was spouting some musical gospel. People would be moved by my supposed “angelic voice” And they could do so comfortably because my physical appearance fit the role of female recording artist. I do think to a large degree they hold men to a certain standard as well, but for women the standard is set much higher for the female artist to be beautiful first, and talented second.
In 1996 I was diagnosed with Fibromyalgia. It used to be considered an ambiguous disease that mostly women got and had to fight to convince their doctors, friends and family members that they had something they were suffering from. Not to make this comparison as anything nearly close to what women went through in the 1950’s, it wasn’t Francis Farmer having been lobotomized because she was perceived as hysterical or uppity. But, many of us who first got the disease a decade ago, were considered along the lines of either hypochondria, or hysteria, or mentally unbalanced.
It has been a long fought journey for me since my diagnosis. With many hills and valleys for me to navigate. There were times when it seemed to go into a quieter mode. Where the pain and various symptomology were managable.
I am writing about all this now, because in the past year and a half, I have become so debilitated by this invisible enemy that there are times, I can’t even raise my arms to put on a shirt. I can’t play a chord on the piano because my hands and wrists hurt so much and are so swollen from the inflammation that I can barely manage to pick up a coffee mug to my lips. It seems like i might have dropped off the radar screen of the music world, although I have released a few things during this time. I am a fighter, and so I have to push through. I haven’t been able to perform live. And something far worse has happened lately to me, and has spurred on this soliloquy of my shame.
My metabolism has completely shut down from the enormous pain cycle that I’ve endured over the past year or so. I’ve had two major surgeries and In a small span of time, I have gained so much weight that it’s hard for me to move easily without having to use a cane to walk. The weight gain goes hand in hand with inflammation. It’s a cycle that prohibits me from doing the things that I used to be able to do. Things that I’m passionate about. Things that need to get done.
And even though Fibromyalgia is taken much more seriously than in the past, there’s the evidence of it just by the myriad of commercials for the pharmaceutical companies, who tell you, you don’t have to lay there and be a pain sissy any more. It has finally been recognizws by the medical establishment.
Still, it’s something that falls under the catagory of ” But you don’t look sick”. The assumption for my weight gain by most people would be that I must not be getting enough physical activity. That I sit on the couch eating crispy cream donuts and gallons of soft drinks and alcohol. And while my dear friends look at me sympathetically trying to understand why i am not as engaged as they would hope, no one can truly understand what it’s like not to remember a day when your entire body didn’t feel like there was a war zone going on inside of you.
For me the pain is this stoic challange that i have to hang in there long enough for someone to come along and find a miracle cure that will find the root source, burn it out and relieve my agony. But, and, here’s the shame part.
I want to go hide myself away somewhere, because I do not recognize myself when I look in the mirror. I’ve thought of throwing sheets over all of them, as if I were a vampire. When I see myself, I cry. And I feel like I can’t go on this way, because i have lost myself. Somewhere there was a time When I was Beautiful. But that girl is missing.
I think she’s gone and never coming back. Who is going to go out there and sing her songs and play her piano? Obviously this new person, this Quasimodo can’t represent the girl I once was.And I want to be totally clear about one thing. I am not making a value judgement about people’s weight. I am not criticizing individuals who are of a certain size. That’s a very personal thing. I am referring to my own comfortability with my own body image. That’s again, where the shame plays a role in all this.
This invisible enemy that has taken over my body,and virtually changed the landscape of my total being,is interfering with my ability to function as an artist.
I’ve recently shot a live performance video of my song Mothlight from The Amber Sessions at Butch Vig’s historic Smart Studios here in Madison. Because it is closing it’s doors after many years, I was given the opportunity to participate in doing a video playing their amazing grand piano with Matt Turner, friend and world renown improvisational cellist. There is a documentary in the works being filmed currently that will feature a lot of the notable people that made that studio so historic. Nirvana’s Nevermind was recorded there. How could I say NO to performing there.
These days I hide myself away like a hermit in a cave, only coming out for sustenance or necessity.I was conflicted about doing the video because i knew that I would be immortalized for my performance in the current state of self perceived monstrosity.If I looked like Christina Aguilera or Beyoncé, I could chirp out chop sticks on the piano and the world would be thrilled. But I fear that no one will be able to look passed how I have recently metamorphsized into a Kafkaesque creature or my great aunt Edith from Kiev. I would love to release the video. But what ALL I see is how hard it was for me to struggle to reach the octaves because my hands are so painful and swollen. My elbows and wrists stiff with inflammation. And how from the angle that I was filmed from, I really do look like Chaney Sr’s Phantom of the Opera. Hulking over the keys: bloated face, amorphic body in a black suit that would otherwise be considered androgynous and chic.
If people could keep their eyes closed and listen to the interplay between my piano and Matt’s haunting cello the video would remain a stirring and evocative piece of work. Instead, I fear people will only see ME and think”wow she doesn’t look like she sounds” Where’s the little blond nymph who’s sensuality only synthesized her music and lyrics.
This is why I haven’t pursued playing live shows these days. This is why I haven’t put myself out there in the public domain. This is why perhaps when i’ve submitted recent photos to journalists to use for material to review, they seem to stick with the older promo shots. This shame I feel is perpetual. It has a life of it’s own.
And no matter what i’ve done to combat all this. And believe me I have tried every modality of healing. And I am not a lazy patient. Til recently I was boxing. I find it an art form. I was really good at it too. I was doing Yoga til all my joints seized up on me and I couldn’t even bend or lift or twist or walk. I’ve tried every kind of alternative treatment. I take supplements, filter my water through a special crock. No toxic chemicals in this house. Homeopathy, integrative medicine, Ortho Molecular treatments etc….
I don’t eat processed food. I eat very well. I don’t drink, smoke or binge on things that can be harmful. I am wheat and gluten free. I’ve done fasts and heavy metal testing. When I say, that I have fought hard. I mean that in the warrior sense. But still, no matter what I do, this illness has decided that I must be willing to allow my body to collapse for now. My body is fighting, and in the process, it has built up a shield in the form of extra poundage because it needs all the energy to fight itself. My body is at war with itself. And I am now a refugee from my former self. I want to come home, but I guess it’s just not time yet. I am in exile.
So what does the creative mind do who want’s to reach outward, trapped in a body that people won’t accept as embraceable? I don’t know the answer to that, and so I cry a little in spurts every day.
I am not a depressed person. I am an angry refugee. I see the joy in the smallest of things, honestly in the smallest detail. And still I cry every day. every day.
When I was beautiful, I moved so easily in my own skin. My life, the value of my work should be about the authenticity that I bring to my art. I’ve watched the video a few times now. And all I see is Quasimodo and The Phantom of the Opera. I want to share my music with all of you, and yet the shame is holding me hostage. I am at the mercy of the pain cycle. I am the so called Hyper Sensitive Person who suffers from Nerve damage because I take everything in so deep that it manifests on a physical level. I’m wearing a pain suit. I’m growing like Allyson Hayes in the 50 Foot Woman. And until they figure out how to help me jump start my metabolism again, so that when I work out, and when I eat well, and when I do all the right things for myself. It will count for something, and I’ll be that little blond girl again, who seems to move like liquid or skip like a child, who’s nerves are not in chaos.
I hope this explains a little bit of why I’m not always on the radar screen. And maybe give some of you an understanding of what it’s like to feel so deathly ill, when everyone else just thinks your lazy or doing something to cause your poor health. That it’s not in your head, Or something you can just change by doing xy and z. And that for particular people in the public’s eye, can’t always be beautiful on cue.
I really want to love myself again in total. I really want to release that performance I did the other week.
I just have to figure out how to muster up the courage to be proud of who I am as an artist, and stop looking through the lens of shame.
*the production and decay of strange particles” comes from a title episode of The Outer Limits