Living With CFIDS
Music in my sleep

By Karen Kopacz

When I was a little girl, symphonies filled my ears in twilight sleep, the stage between sleeping and waking. Until I was older, I thought that everyone heard this music just before dozing off or waking. It calmed me after nightmares and brought the vividness of my senses back to me when I could not remember my dreams.

During my four years of college, I wavered between concentrating in fine art and writing, while focusing on music in my spare time. Just before graduation, I was asked to move from Chicago to Minneapolis to join two bands in the Twin Cities. I don't think I would have moved to Minneapolis had I been offered a well-paying job as a writer. Yet, music somehow lured me away from a city with which I was constantly enamored.

These bands thrived for a few years and then disintegrated. There were other bands, but it was not until I began to play the music in my sleep that I actually felt successful. The project was called Swoon. We had only played three shows before being nominated for best new band by the Minnesota Music Academy. I was working hard for my dream, to be a professional musician, and it was coming true. At 25, after years of eating peanut butter and jelly and having to borrow money from my parents, I was finally financially independent and doing what I loved. This meant juggling a full-time day job plus an evening job as a waitress, promoting my musical project, playing live shows and still managing to find some quiet hours with my boyfriend, Ev. 

I moved in with Ev after getting what seemed to be the flu. I was unable to walk for two days and the illness never quite went away. Shortly afterwards, I discovered I had CFIDS and fibromyalgia. Because of my symptoms, I quit both of my jobs and was forced to give up music. CFIDS and fibromyalgia took it all away from me.

I was housebound much of that summer. Ev was extremely supportive and we worked through our resentments. He resented my illness and the way it affected the growth of our relationship. I resented that he (also a musician) had gotten signed with a major label the month I received my diagnosis. I wanted to be happy for him, and truly was, but there was an envy that lingered from having to give up what I loved most while he thrived in what I had worked toward for so long. During my housebound time, I was able to use our computer with little repercussion and when I had enough energy, spent my time writing and learning Photoshop. I went from being practically computer illiterate to computer savvy in just a few weeks.

I had begun writing every day and forming my literary musing into a manuscript, with hopes of publishing it. I also began doing a lot of experimental photography. Due to my illness, I could not use a flash and did a lot of time exposures in dark settings. Then a friend of mine who wrote for a few local publications said he was doing an interview with musician David Byrne. He invited me along to take the photographs.

The next thing I knew I had been invited to join Pitchfork Internet Media as the staff photographer and was taking photos of my favorite musicians during their live performances. So I was accomplishing great things while at the peak of my illness. Sometimes my health caused me to cancel photographing concerts at the last minute, but the editor of Pitchfork kept his faith in me and, regardless of my health, kept me on as his photographer.

While I was still quite ill and confused about what direction my life was taking, I discovered my guitar sitting in the closet. I picked it up one day and just played it until my fingers hurt and peeled. It was then I realized that despite my accomplishments, I had missed making music the way a true romantic misses her first love. I picked up my guitar every day after that, not really knowing what my intentions were. I knew I would not be able to play live shows or even attend rehearsals. Yet, on my humble four-track recorder, I was writing up to five songs a day. Songs would just pour out of me, as if from somewhere else entirely, like the music that came to me in my near-dreams. It was back. Ev was the one who first encouraged me to continue. He took some of these songs and arranged, produced and mastered them.

During this process, I remembered Shannon Kennedy. She was a photographer who developed sensitivities to chemicals used in the development process. Instead of changing professions, she made her work adapt to her. She began executing elaborate and very beautiful photocopies of the human body. Her work was unique and more revered than ever. This fueled my decision that even though the music business is very tough (even for a healthy person), I was going to make it adapt to me. Instead of giving up because of my inability to tour, I made an album that could not be performed live. I became a solo artist by default, because I could not work well in the studio with others due to my fatigue and malaise. I honed my skills in production and Ev completed what I could not do. My album was distributed only to a few acquaintances, who encouraged me enough to consider marketing it to record labels. Ryan, the editor of Pitchfork, liked it so much that he helped me distribute it to his label contacts.

I received my first label offer recently, but still need a lawyer and still have no money or paying job. However, I do have the support of my family, friends and Ev, who have made these things possible. My manuscript is complete, but has not been sent to an agent yet. I have developed new techniques in using bad photographs as springboards for collage rubbings. And I have started on another album, this time in our basement studio. A great deal of my energy has come back, but I am not recovered. There are days when I accomplish nothing and cry all day long. I still meet people who think my illness is a state of mind or a conscious derailment from life. I am overwhelmed with all I have left to do-I have created all of these wonderful things, but they are still just sitting like dust in my desk, computer and cassette tapes.

My greatest challenge will be to make my creations real to the general public, and I realize that even when I do, I still might not make any money. This illness has opened my eyes to a new world of suffering, but also a new world where I can make my favorite things the main part of my everyday life. I have learned to appreciate the uniqueness of the music in my sleep and its role in my life. I cannot let go of the things that make me who I am or I will be living in my own skin as a stranger.

At the time she submitted this article, Karen Kopacz was giving her creative side free rein through music and photography.