My story begins like that of so many of us who have Chronic Fatigue Syndrome (CFS).
In 1990 I was a lively woman with a growing career as a psychotherapist. Then I got “the flu.” The flu went away, but the fatigue did not. I kept pushing, like most of us did, until one day I was lying on the floor of my office, crying and barely able to get up. A colleague came by and said, “Tamara, don’t you think it’s time to explore what might be wrong with your health?”
It makes me sad to think about my complete innocence and ignorance as to what I would be facing for the next 15 years. Shortly after that day, I went on disability and remained on it for several years. In time I became strong enough to start functioning for longer periods. It was then that I slowly began to build the part-time private practice that now supports me.
It’s hard to describe to people how erosive it is to our very sense of selves to be so sick for so long. This is common to all of us with CFS. Another part of my particular story is that once I was off of disability, I had no other source of financial support. So even though I was still very ill, I had to work. And the work I’d been trained to do was to help other people—a job that can be draining even for healthy people. So day after day, I went to work in pain, sleep deprived and feeling sick. It was difficult in so many ways, compounded by the fact that many of the people I was helping were in better situations than I was. This created a chronic and deep sadness in me, as well as some resentment.
Around l998, still very sick, I began to long for a creative outlet of some kind. I joined an Artist’s Way group. One of the exercises was to list the times in our lives that we’d experienced joy. I felt upset and angry at first because, as you all know, joy is elusive when you’re sick—and at that point I’d been very sick for more than eight years. But then I reflected back on the 30 years I’d lived before getting sick, and the answer came quickly: it was when I was singing. So that was the beginning. Then my brother very generously sent me $500 for my 40th birthday, and I bought a guitar.
The fatigue was still constant and crushing back then, and my brain didn’t work very well either, so I only learned a few chords here and there over the next couple of years. But then I started taking lessons. I would leave the lessons so fatigued that there were times I wondered if I should stick with them. But on some level I knew I needed to continue, and so I did.
I needed, so badly, something in my life that would feed me and bring me pleasure. I had a feeling that if I could learn to play the guitar, that would be the ticket. So I stuck with the lessons, and now I’m so glad that I did.
My guitar teacher was very supportive of what she called my natural musical talents. She told me about a place called Puget Sound Guitar Workshop. Basically, this is a week-long music camp for grown-ups. The days are structured with classes and the evenings are packed with activities.
I was terrified to give it a try. I’d achieved a lot of recovery, but going to camp would be a quantum leap for me. In particular, I find socializing to be one of the most exhausting things I do. And I knew I’d be in the middle of a musical beehive! As fate would have it, I discovered my guitar teacher also has CFS! So, naturally, she understood my fears, but encouraged me to go nonetheless. I hadn’t been on a trip in 15 years. But I decided to go.
There were many things about the workshop that were hard, and I was in my cabin crying on more than one occasion. But during the course of the week, I took a songwriting class, and it’s no exaggeration to say that it changed my life. I wrote a song called “Moving Slowly” about living with CFS. With the support and encouragement of the other workshop participants, I overcame my crippling stage fright and played the song at the student concert. I received the only standing ovation of the evening and several people cried. I knew then that I had to keep writing my own songs.
And I have. To the playful “disgust” of my songwriting friends, I’ve been incredibly prolific for the last two years. I explain to them that I think I was “incubating” all of these songs while living through the abject hell and isolation of CFS. I had, and still have, so much to say.
Though I still deal with limitations and symptoms that inform the shape of my life, my happy ending is this: I am now a recording artist. I just received my CD from the manufacturers a few months ago. I’m sure you readers can understand, more than anyone, why when I got in my car to drive home with 1,000 CDs, I cried. And you can also understand why I titled the CD Long Time, No See.
There are two songs on the CD that come directly out of my CFS experience. One is called “Listen Me Back,” about how invisible we are and how this illness can make us feel like we aren’t even who we used to be. The lyrics ask, “Does anyone here still remember me? Can you listen me back to who I used to be?” The other song is called “Are You Really There?” It’s about the loss of faith that can come with such prolonged suffering.
I’m happy to report that I also had plenty to say about other things: the tried-and-true topic of romantic love (when it’s working out and when it doesn’t), the death of my mother, the lessons I got from my father, aging and friendship. It’s proof, now that I think about it, that CFS isn’t my whole life, as it used to be. And I am so thankful. I wish the same for each of you.