Frank J. Oteri: Perhaps the most difficult subject to talk about has been your compositional hiatus.
Lois V Vierk: In 1998, I suddenly got sick, and the sickness has been debilitating. I was leading a healthy life and all of a sudden I got terrible pain up and down my spine. I got so dizzy I couldn’t walk too well for the next year and a half, or sometimes could walk, but I’d have to hold onto my husband while I was going down the street. I couldn’t use my arms very much at all, plus there was a burning pain on the top of my head. It was like jack hammers were pounding fire in my head. I couldn’t physically use my arms or even my eyes enough to do composition. I couldn’t even read a newspaper article and remember from paragraph to paragraph what it was about. At one point I looked at my own scores and I couldn’t understand them. Very frightening stuff.
I went from doctor to doctor and nobody had anything to say except, “Oh, it must be in your head.” Well, it was hurting my head a lot, but it wasn’t something I was imagining. Finally after a year and half, through my husband’s family, I found a wonderful osteopathic physician, Kim Sing Lo, D.O., in New York City. He saved my life. Even though at the beginning Dr. Lo could not put a name on my illness, he started treating me and some of the symptoms went away. The constant dizziness pretty much left, the burning on top of my head went away, but the very great pain in my spine and limbs persisted. There wee many other symptoms such as compromised breathing, digestion, hearing, etc. that came and went. My energy level went way, way down. I kept trying to write music. But I never could get any momentum going. If I used my arms or hands or even eyes for just an hour or two, a couple days in a row, it would typically bring on “howling cramps”. These are cramps where the pain is so intense for 30 minutes or so that it decks you wherever you are and you can’t move. It leaves you in pain and stiffness and very weak for days afterward. The cramps could be in your leg, it could be in your chest, it could be in your neck. I’ve had these cramps over my heart. I thought I was having a heart attack, but I wasn’t.
So Dr. Lo kept treating me week after week. I always got relief for a while, but wasn’t back on track by any means. After another year and a half or so, he said the only time he’d ever seen this type of disease—and by this time it was clear it was some kind of autoimmune disease—was back in the late ’80s, early ’90s when he had patients who had taken a food supplement and gotten sick. I looked at him and said, “Was it tryptophan?” and he said “Yes.” I had taken L-tryptophan, a food supplement from the health food store, for 10 years all through the 1980s. I had a vague recollection of a newspaper article back than recounting a tryptophan disaster. I found the website for people who have a disease called eosinophilia-myalgia syndrome or EMS. I learned that 40 people had died from this in the big outbreak in 1989-90 and that thousands more had become sick with symptoms like mine. The disease has been ascribed to a contaminant in L-tryptophan from one particular manufacturer. There has been little research on this disease and not too much is known. Some studies seem to indicate that the amino acid tryptophan or the related supplement 5-HTP are by themselves capable of causing EMS in susceptible individuals. I saw all my symptoms there on that webpage for the first time. That’s how my diagnosis came about.
Having a diagnosis of this is no great shakes, because there is no cure and no recognized treatment. But I’ve been so lucky to find osteopathy, a hands-on medical treatment that can relieve pain, promote lymphatic flow, treat connective tissue, and many, many other things. Thankfully Dr. Lo thinks outside the box, even for an osteopath. So he’s been keeping me going for all these years with weekly treatments. Recently, he figured out that there was a damage to part of my autonomic nervous system, namely the proprioceptive system. The good news, however, is that my doctor has advised me in ways to work on this problem. It’s a long story, but very briefly, with compromised proprioception (which is how the body senses the environment like the floor, the ground, the space itself around a person), the eyes take over tasks they were not meant to. Sensory tasks that are supposed to happen all by themselves, are not being done by the nervous system, so the eyes step in. But the information is faulty, the nervous system reacts badly, the muscles do not function correctly, there is dreadful full-body pain. But if you can take the eyes out of the loop, there is a chance you will be able to jump start the proprioception, the autonomic nervous system. Doing things like walking (in a safe place like the track) with eyes closed helps get the nervous system functioning more as it should. So this and related exercises are what I’ve been doing for the past 6 months. I’ve been improving, after all these years! I’ve been swimming all these years also, three times a week, and that helps. It helps anybody, but especially people with autoimmune disease. So I’m very hopeful I will be able to compose again. I haven’t had that hope for many years.
FJO: So have you composed anything at all since 1998?
LVV: There have been things—you’ll see dates in this period from ’98 or ’99 to the present—but they were few and far between.
FJO: Back in 1998, you were really on the cusp of something pretty significant. Your music was starting to get a lot of attention. There were two recordings, you were part of a documentary about new music, and you were one of the people who was being described as the next generation of American maverick composers. I never knew about your health problems, so it was a shock when we finally spoke to each other about it. It’s a real tragedy, not just personally for you, but also in terms of your music.
LVV: Yeah, it was terrible on many fronts when I first got sick. It was horrible that the phone would ring, I’d answer it, someone would be asking me to write something and I had to say, “I’m sorry, I can’t do it.” I had money I returned to people, and that made me feel bad that I just don’t have it in me to finish pieces.
I think being out of the scene for so long makes you realize what really is important and what’s not. The scene is not important. It might get you the next commission, but what’s important is what’s in your heart and your soul. What’s in your life, that’s what’s important. I still have music in my heart and my soul, and I’m going to find a way physically to get it out. Also, if I didn’t have my family and my good friends, I’d be nowhere. You know, my husband and my daughter have been through thick and thin with me.
There was a time when I was very sick and I couldn’t even dream at night. I think there’s something compromised in the connective tissue in the brain with this type of autoimmune disease. It’s very common that EMS patients don’t dream. Perhaps we don’t remember the dreams, but I think it’s more than that. Now that I’m feeling a little better I’m dreaming again. There’s a flow happening. Music is also a flow for me. It’s part of who I am. And when I had that flow interrupted in my body, it was also interrupted in my soul and in my music. Now it’s back somewhat and I can hope.