Tag: disability aesthetics

Rhapsody in Discomfort

A chronic pain assessment form

I’ve been a violinist for forty years and I have made a living from it since completing school twenty years ago. I’ve also been afflicted with chronic neurological Lyme Disease and co-infections for thirty-three years, and boy oh boy, does it get in the way. So, how do I deal with it, you ask?  Well, write a trio about it, of course.

I started learning the violin just before my fifth birthday through a Suzuki program in New Jersey. My teacher was Louise Butler, a Suzuki guru who studied with the Sevcik student, Scott Willitts. (I have autographed photos of Willitts, Suzuki, and Sevcik on my walls, among many others.) Playing the violin was fun and easy for me in those days. Mrs. Butler kept jumping me up to the next class, like skipping grades, and she eventually encouraged me to audition for the pre-college division at Juilliard. I refused; Saturdays were for baseball, skateboarding, and general mischief. I then studied with Janina Robinson, a Persinger student (autographed photo on the wall), Lewis Kaplan, a Galamian student (if you have an autographed photo of Galamian, please give it to me), Hall Grossman at Interlochen Arts Academy, Linda Cerone at Cleveland Institute of Music, then Fritz Gearhart at University of Oregon.

When I was about twelve, the difficulties began. First it was insomnia and depression. Pain showed up in my left shoulder at Chautauqua when I was fourteen, obviously from playing the violin so much. At fifteen, while the depression and insomnia intensified, the pain migrated to my neck and then down my spine. My parents brought me to every doctor they could find: chiropractic, physical therapy, acupuncture, Feldenkrais, Alexander Technique, and countless orthopedists, one of whom wanted to operate on disks L1 and L2, because they appeared to be deteriorated. It wasn’t a sure thing, so we chose not to. When I was sixteen, I was wearing a giant hard plastic brace that strapped around my abdomen from armpits to waist and had a team of shrinks prescribing pills. Playing the violin was no longer fun or easy. I started to feel like I could never get warmed up; stiff muscles got in the way of accuracy, and playing became laborious. When I’d perform, I’d shake all over, which my peers and teachers attributed to being nervous. The violin had long since become my raison d’être, so I forged ahead.

We found a notable doctor in New York City who’d written several best-selling books about how back pain was usually psychogenic. I had a few meetings with him and he said I fit the bill; I had Tension Myositis Syndrome. I’d received a PTSD diagnosis a few months earlier because of an accident my brother had, so this made sense. He said deteriorated disks are common and usually not painful. The protocol? Acknowledge that the pain was created by the unconscious mind to distract the conscious mind from the bad things that are too painful to face and do it regularly enough that the concept becomes fixed in your unconscious. We believed him.

Over the next decade or so, my back pain got worse and worse, as did the other symptoms. In my twenties, I developed tendinitis in my left wrist, as so many violinists do. I saw several doctors and was told to stop playing for two weeks, which was heart-breaking. After two weeks off, not only did the pain not subside, but it then showed up in the right wrist. At this time, I was living in Sacramento, playing concertmaster of the Sacramento Philharmonic and California Musical Theater, teaching at UC Davis, and running Sacramento School of Music, which I’d founded. I saw lots of doctors at the hospitals of UC Davis, Stanford, and UCSF; spine centers, sports medicine, pain management, hand surgeons, etc., etc. Many didn’t know what to tell me and passed me off to somebody else. Others blamed it on stress. One doc told me that I had a stenosis in my neck which might be causing the issue.

I decided to call up my former college teacher, Linda Cerone, for advice. The next day, she informed me that I could come and see the neck surgeon in Cleveland who’d recently operated on the concertmaster of the Cleveland Orchestra, and that he’d make room for me to come any day the following week. That’s exactly what I did. This doctor agreed with the stenosis diagnosis but said operating may or may not relieve the pain. I then flew to Chicago to see a very notable doctor at Northwestern who was famous for helping musicians. She said sure, I had tendinitis once, but it’s now a chronic pain disorder originating from the mind. Following that, an osteopath in California did some acupuncture on my neck and fifteen minutes later the pain in my wrists began to burn, then my arms went partially numb.

By this point, from age fifteen to twenty-nine, I’d probably seen over thirty practitioners for these chronic ailments that never seemed to heal. Most of them mentioned stress or other psychological conditions as the culprit and/or excessive violin playing. A few of them threw around the vacant term, “fibromyalgia.” Bewildered and scared, I decided to stop playing the violin until I healed. I found a body worker in California who was popular with musicians. His diagnosis was the same, so I started weekly sessions with him, combining massage with his arm-chair psychology. Whenever I was in pain, I was instructed to identify what my headspace was at the time, acknowledging that I’d created it myself.

During this time off from playing, I continued to teach. The Sacramento Philharmonic was very supportive, giving me all the time to get better that I needed. A smaller orchestra that I also played concertmaster for, was not. The conductor of that orchestra fired me because I missed a year of concerts. I filed a grievance with the musicians’ union and got the job back. After twenty months of not playing the violin and experiencing no improvement on my pain, I needed to go back to work. Most places were happy to have me back and I was thrilled to be there. That little orchestra was different. While I had unanimous support from the musicians, the conductor really stuck it to me: avoiding eye contact, refusing bows after solos, adding spontaneous solos the day before the concert to throw me off, and playing other games. I withstood this for the next ten years, still not knowing what was really wrong with me.

Throughout my thirties, all the symptoms increased. I developed tendinitis in my elbows and my knees and neither healed. The pain and muscle spasms from those injuries increased and migrated, eventually meeting up with the pain and muscle-spasms in my back and neck. I developed vertigo, brain fog, and tinnitus. One day, when I was thirty-seven, I was standing in the bathroom, too exhausted and dizzy to get in the shower. I started thinking about how easily I’d been injuring myself and how nothing ever seemed to heal. That’s when it hit me; I must have a systemic disease and this psychogenic diagnosis was bullshit.

I went to my doctors at Kaiser and exhausted all the available options. They tested me for every auto-immune disease they could. There was one day that they took out eighteen tubes of blood. The result was always, “good news, you’re perfectly healthy!” My dad said he thought I might have Lyme Disease. When I mentioned it to the Kaiser doctors, they refused to test me for it because I’d never found a tick on myself. I kept insisting, so they finally tested me. Negative. More good news.

A couple more years wore on, riddled with fatigue, depression, pain in every inch of my body, vertigo, headaches, brain fog, rashes, testicle pain, tinnitus, gut issues, metabolism issues, diarrhea, light sensitivity, sun intolerance, allergies, nerve pain, numbness, etc. Some days I could barely move. I had trouble getting places, especially in the morning.

One day, when I was thirty-nine, my friend Robin said she’d mentioned me to her nutritionist. The nutritionist suspected that I had Lyme Disease and encouraged me to call her. This doctor explained that the mainstream Lyme test, which Kaiser uses, is terribly outdated, often showing a false negative. She administered the newer tests and Eureka, I was positive for several infections! To be sure, I confirmed this diagnosis with Lyme experts up and down the West Coast. They all agreed it dated back to when I was about twelve years old. It was amazing to know that all along, my collection of ailments was caused by this disease. I’d previously been trained to believe that I’d caused all this myself; for decades, when I felt pain or other symptoms, it was accompanied by guilt and self-loathing, and it wasn’t easy to undo this.

A rendering of the Lyme disease spirochete, Borrelia burgdorferi.

The Lyme disease spirochete, Borrelia burgdorferi, is an obligate parasite that cycles between ticks and vertebrate hosts. In this rendering, immunofluorescent antibodies were used to identify spirochetes that express outer surface protein D (yellow and red) and were merged with an image of all the spirochetes labeled with an anti-B. burgdorferi antibody (green). Credit: NIAID (via Flickr).

Lyme Disease specifically refers to Borrelia burgdorferi, a bacterial infection contracted from a tick bite. Lyme is also an umbrella term for the forty-five other infections that are often contracted along with Borrelia. In addition to Borrelia burgdorferi, my tests showed Ehrlichia, Bartonella, Babesia, Relapsing Fever, Epstein Barr, and others. Each Lyme victim has a unique collection of these infections that wreak havoc on the individual’s immune system, causing dozens of symptoms that are often misdiagnosed.

We’ve all heard about the bulls-eye rash followed by a few weeks of antibiotics. Well, those are the lucky people. Many victims never know they were bitten, developing symptoms slowly over many years, with doctors attributing them to other conditions. When these infections go untreated, they become chronic. The bacteria burrow deeply into the victim’s muscles, nervous system, gut, and brain, protecting themselves with a biofilm and functioning like a virus. Standard treatments include supplements, detoxing, and antibiotics. There are also more experimental and invasive treatments, some of which aren’t legal in the United States. In some cases, these treatments bring short or long-term relief to patients, while many of us go on with little or no relief. Insurance companies still reject the existence of chronic Lyme because the treatments are expensive and often endless.

For five years, I tried everything my Lyme doctors wanted me to do, none of which were covered by insurance. There were days when I would take up to eighty pills. I developed “pill fatigue,” which caused me to gag the instant a pill touched my mouth. I tried various elimination diets. Towards the end of these efforts, I was on three intense antibiotics simultaneously for about nine months. An interesting thing happens when you attack Lyme with antibiotics. The Lyme actually fights back, causing the patient’s symptoms to grow exponentially worse. It’s called “herxing,” coined by Dr. Herxheimer. For most patients, this lasts a few weeks, but for a few of us, it lasts indefinitely. I did four different stints of antibiotics. Each time, the “herxing” never subsided and we had to abandon the treatment because it became dangerous. I did all the standard treatments over the course of five years, then a little over a year ago, I gave up. I decided to live my life the best I could with the diseases until a better treatment or cure is discovered.

For the past fifteen years, I’ve been living in Berkeley. I’m still Concertmaster for the Sacramento Philharmonic and Opera, Concertmaster for West Edge Opera, Principal 2nd for the Berkeley Symphony, I teach violin at UC Berkeley, and I play much of the season with SF Opera. I play an enormous amount of new music. Every note I play hurts, though. Every step I take is awful. Every time I turn my head or redirect my eyes, the room spins. I sleep horribly, it takes me an hour to get out of bed, and some days I can barely walk. The disabled placard in my car helps a little. All the shakes I get when I perform are because Lyme is entrenched in my nervous system. When the “fight or flight” kicks in, which it does for all performers, my nervous system can’t handle it, causing a seizure. The brighter the stage lights, the worse the reaction is. I’ve learned that this is due to Lyme attacking my brain and eye muscles. I’ve controlled it with medication all these years so that I can get through performances. One day I didn’t take those meds and the concert was halted by an audience member because they thought I was having an epileptic seizure.

How does the disease specifically affect my violin playing, you ask? Well, the muscle stiffness keeps me from playing as accurately as I know I can and there’s always pain. There were a few days here and there when a Lyme treatment gave me relief for a few hours, and I experienced what health feels like. Once in Seattle, after cleaning out my blood with ozone, I felt all my muscles and joints relax, the oppressive fatigue lifted, and I ended up running down the street in tears of joy, like I was in a corny movie. A second ozone treatment did the opposite, so I’ve been afraid to try it again. A couple of times, while taking antibiotics, the symptoms dissipated briefly and I could get around the violin accurately with ease, feeling like I was Heifetz. It never lasts, though.

What the audience hears from me is not Dan on a good day, by the way. There aren’t any good days. The audience hears Dan struggle through each note, trying to create beauty through pain, pretending that it’s okay. Symphony and opera concerts are often excruciating for me due to the constant playing, particularly in restrictive tuxedos under hot lights. A few of the Lyme doctors, when reviewing my test results, couldn’t believe that I still played the violin. But I’m still obsessed with music and the violin is still my raison d’être. I’m fortunate and grateful to have had so much support from my family, friends, colleagues, and a few good doctors.

I first dabbled in composition when I was in high school. However, since the music field is fiercely competitive and my abilities as a violinist were decent but not amazing, I decided to forgo composition to put all my time into being a violinist. Twenty-five years later, a girlfriend asked, “Do you do anything creative?” “Uh, I’ve played the violin day in and day out for thirty-six years,” I replied. “Yeah, but you just play other people’s music, right?” Astonished and horrified, I explained the art of perfecting one’s ability to play an instrument, develop a unique tone and style, and interpret the masterworks. I then realized she was kind of right… I only played other people’s music. Ouch. My first attempts back in high school were pathetic, but after all, music composition is a craft that needs to be learned and developed just like anything else, right? It occurred to me that it’s okay to compose music that isn’t great, or even good. In fact, it’s perfectly acceptable to compose music that nobody likes. This was liberating. I began composition lessons with Cindy Cox, my colleague at UC Berkeley, and got bitten by the bug, so to speak. To date, I’ve composed eighteen pieces and am currently working on a string quartet.  And surprisingly, there are a few people who like my music!

During Covid, I created The Bow and the Brush, a project of commissioning and composing new music inspired by paintings and sculptures. When the pandemic shutdown began, and we were all stuck at home, like so many musicians, I spent my time playing solo pieces on my violin. I felt happier than most because I did this while looking at the dozens of paintings on my walls, collected over many years. Combining the two was an inevitability. I began composing pieces inspired by these paintings, then commissioning my favorite composers to do the same. The feelings I experience when viewing a painting or hearing music seem to be generated from the same place, and therefore feel connected. In my mind, the colors of paint relate to the colors of tone, and the texture of brush strokes relate to the articulation of bow strokes. In the 2022-23 season, I’ve been performing these new solo violin compositions across the United States and Europe, accompanied by projected images of the art. An album of fourteen of these pieces was recently released by MSR Classics.

“Ehrlichia,” Rhapsody in Discomfort #6 came about when Paul and Vicky Ehrlich, my compatriots in Trio Solano, asked me to write a piece for us to play. As close friends, we’d discussed Lyme often, amused by the coincidence that Ehrlichia, one of the diseases under the Lyme umbrella, was named after the Nobel Prize-winning physician, Dr. Paul Ehrlich (of no relation to the violist in Trio Solano). Composing a piece on this topic, with the title Ehrlichia, was a no-brainer, as they say. Originally, it was supposed to be funny but morphed into something that people took seriously, including me. I composed Ehrlichia during the shutdown.  It’s a little different from the other twenty-nine compositions in The Bow and the Brush because the music is inspired by my disease and the painting was created afterwards. The artist, Nancy Schroeder, is a member of the Lyme Art Association, and suffers from chronic Lyme Disease as well (Lyme Disease is named after the city of Lyme, Connecticut, where it was first discovered in 1975).

Are there other Rhapsodies in Discomfort? Oh my, yes. Initially, the title was a humorous cop-out. It’s much easier to compose a piece with little structure that is mostly ugly than a piece that is beautiful or makes sense. My first composition, “Borderline Phantasia,” Rhapsody in Discomfort #1, is for solo violin and it’s really not good. You’ll never hear it. Then came Rhapsody in Discomfort #2 “Where’s My Monet,” which is a very silly trio for two violins and cello, illustrating my deep sadness at not owning a painting by Claude Monet. Rhapsody in Discomfort #3 “Covids Я Us” is a noisy solo violin piece that involves detuning the strings and improvising while coughing. Rhapsody in Discomfort #4 “The Lump in My Throat,” is an improvised solo violin piece where I drag the bow across the instrument from scroll to tailpiece, while tapping a repeated rhythm on the body. “Timeless,” Rhapsody in Discomfort #5 is the first Rhapsody in Discomfort that I expect to be taken at least a little bit seriously. It was inspired by a set of sixteen sculptures made from antique metronomes by Sean O’Donnell, all commissioned by Arc Gallery in San Francisco. An early example of The Bow and the Brush, Timeless is a juxtaposition of chorale-like melodies created through extended techniques on the violin, over a sound collage created by countless metronomes ticking away. Ironically, the very devices used to establish time, dissolve it. I made a video of it in Arc Gallery that you can see on YouTube.

Then we have this story’s namesake. Beginning with a pizzicato tick bite, “Ehrlichia,” Rhapsody in Discomfort #6 brings the listener through the tribulations of a Lyme Disease patient. The repeated Rondo theme, representing the disease traveling through the body, is a fast moving, feverish collection of broken scales in C minor. Each digression loosely represents a different symptom experienced by the victim, and each return of the Rondo theme mutates as the disease develops. Traditional harmonies, tonal clusters, and extended techniques combine to create feelings of discomfort, exhaustion, confusion, fear, and hope. The prevailing aura of the composition is one of foreboding. Toward the end of the piece, the viola introduces intravenous antibiotics with a sequence of inappropriate C major chords. The violin takes over these chords, hammering them relentlessly in syncopation over the loudest and most aggressive statement of the Rondo theme yet. This juxtaposition represents the onslaught of antibiotics and the reactionary “herxing” of the disease. The cacophony resolves into sublime exaltation, portraying the alleviation of symptoms, followed by a passage of blissful calm and relief. Unfortunately, relapse is right around the corner.

InterMusic SF gave us a grant to record Ehrlichia and make a video. Trio Solano made the audio recording with Swineshead Productions, LLC in Hertz Hall at University of California Berkeley, the use of which was donated to the project by the music department. We commissioned Nancy Schroeder to create her painting, then made a video with Tritone Media in a patch of Tilden Regional Park that resembled the scene of Nancy’s painting. This video was shared on YouTube and created a buzz, bringing catharsis to thousands of Lyme patients, as well as prompting articles and blogs within the Lyme community. We’ve received hundreds of comments from victims who thanked us for creating this, and it thrilled us. Many said that it sounds the way they feel. It’s also brought catharsis for me. I know it’s a cliché, but I expressed the pain, and I felt better; and the audience responded. Whenever we perform it, I explain what the piece is about, although I don’t tell the audiences that I have Lyme. Many audience members tell me that “they don’t usually like modern music,” but with my explanation before the performance, they find it riveting. Both the composition and Trio Solano received Silver Medals from Global Music Awards in 2022. Ehrlichia is the only composition of mine that has received this kind of interest. The audio recording from this video will be included on the album, The Bow and the Brush Volume 2, which will be released by MSR Classics in 2024.

This article is the first time I’ve gone public about my disease. Coincidentally, I’m not the only disabled member of Trio Solano. Paul Ehrlich, the violist, suffers from focal dystonia, which attacked his bow arm beginning about fifteen years ago. Vicky Ehrlich, the cellist, had surgery on her hand a few months before we recorded Ehrlichia. The upcoming album will include a new trio being composed by Michael Panther, a San Diego-based saxophonist and composer who suffers from spina bifida. Michael and I have been friends since high school. Perhaps celebrating artists with disabilities will be an ongoing venture for me? And yes, since you asked, I plan to compose more Rhapsodies in Discomfort and encourage you to do the same.

Molly Joyce: Strength in Vulnerabilty

Composer Molly Joyce

One of the hallmarks of many different kinds of music performance—whether it’s a classical piano recital, a jazz combo in a club, or an arena rock show—is the demonstration of extraordinary physical feats on musical instruments. A cult of virtuosity has perpetuated the belief that the harder something is to play, and hence the fewer people who are able to play it, the better the music, and that the rare specimens of humanity who are able to play such music have special superhuman powers. At the same time, embedded in the word virtuoso is the word virtuous, implying that the rest of us who can’t scale these heights are somehow lacking in moral goodness.

Composer/performer Molly Joyce explained to us when we visited her in Washington, D.C. at the Halcyon Arts Lab, where she’s in residence this year, why perpetuating the notion that only a small select few are physically worthy enough excludes most people from the experience of making and ultimately enjoying art:

I think it’s problematic when one type of body or one type of being is reinforced through new music that still seeks a physically virtuosic connection. And I think that’s why, at least for myself, I always try, in my own passive way, to hopefully suggest other types of physicality.

Although she eschewed pyrotechnics in her own music long before she publicly identified as disabled (which was only about two years ago), Joyce has found many alternatives to virtuosity since embarking on exploring disability aesthetics as an artistic pursuit. For her, vulnerability is the new virtuosity. As she explains, “It’s not like you have to necessarily get rid of virtuosity all together, but you can reimagine it through other forms.”

She realizes, however, that music lags behind other artistic disciplines in embracing disability, and because of that she has been drawn to working with video artists and choreographers. One of the most fascinating projects she has been involved with is Breaking and Entering, a collaboration with the disabled interdisplinary artist Jerron Herman, which was awarded a 2019 New Music USA Project Grant. During the course of the piece, she and Herman swap roles—she dances and he sings:

My dance is definitely not super on point, and he’s not super in tune all the time, but the whole point for us is, through the disability aesthetic, we’re coming together. It’s not perfect. There are enough mistakes and we’re showing this, and also showing our vulnerability through that, a breaking and entering through, hopefully, to something else. That’s just as interesting as a very virtuosic piece.

[Ed. Note: This month, guitarist Jiji will perform Molly Joyce’s Plus and Minus at Arizona State University in Tempe, AZ (February 1). The South Carolina Intercollegiate Band, conducted by Jack Stamp, will perform her All or Nothing in Columbia, S.C. (February 8). NakedEye Ensemble will perform Less is More at The Cell in New York City (February 16). Cellist Alistair Sung will perform Tunnelvision at Batavierhuis in Rotterdam, Netherlands (February 20), and the Harvard Glee Club, conducted by Andrew Clark, will premiere a new Molly Joyce work with text by Marco Grosse at Harvard University in Cambridge, MA (February 21). On March 31, Joyce will moderate a Disability and Creativity Panel at the Halcyon Arts Lab in Washington, D.C., and on May 15, New Amsterdam Records will release her first full-length album Breaking and Entering which features her voice, vintage toy organ, and electronic layering of both sources “in an act to reimagine disability within the human body.”]