Why I'm Creating a Virtual Ensemble for Musicians With Chronic Illness and Disability

Background

On April 12, 2015 the membrane surrounding my spine and brain spontaneously ruptured, causing cerebrospinal fluid to leak and my brainstem to compress against my skull. The neurological and cognitive impairment was severe and unending, with neither diagnosis nor treatment in sight. I was a medical mystery and a bed-ridden college sophomore at the very beginning of what would become my medical odyssey.

• What is Ehlers-Danlos Syndrome?
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Over the next four years I saw nearly 60 different doctors, made five visits to the emergency room and was prescribed over 30 different medications. I was eventually diagnosed with Ehlers-Danlos syndrome, a rare genetic condition that affects all the connective tissue in my body, weakens my joints and wreaks havoc on my central nervous system. Having a chronic illness/hidden disability has made daily life a tightrope walk of sorts – irrational, reactive, treacherous and all-consuming, always with the promise of great existential threat lurking just below. But it has also prompted rich adventure and much creative inspiration.

The Project

For the past five months I have been filming my daily life with the goal of creating a short documentary film about living with chronic illness. On March 26, 2019 I had surgery on my spine and skull to address the issues brought on by my initial CSF leak, and am now feeling better than I have in years. While recovering from surgery I set out to write a piece of music for the film that would not only help me process my own experiences, but also potentially help others going through something similar.

I’ve written “Resonance” for orchestra and choir to be recorded by those around the world living with chronic illness/disability. But I need your help! By uniting our voices in song, and giving a face (or many faces!) to pain, we can create a platform through which we can improve both public and clinical awareness of our conditions, and ultimately inspire research into new diagnostic and treatment practices.

Below, I’ve included links where you can download the music, and instructions for how to submit. There are no auditions! If you are able to sing/play an instrument and are also living with chronic illness/disability, all you need is a way to record a short video.

Resonance

Every time the piano key is pressed, or the guitar string is plucked, we do not hear just one pitch but an endless series of varying pitches whose frequencies rise towards infinity. The pitches in this series are known as harmonics, and it is the volume of each harmonic that defines the note’s character (its timbre).

In the context of a song, individual harmonics are inaudible to the untrained ear, hidden in anonymity. An illness or disease has a harmonic series of its own: the seemingly infinite, often invisible ways in which the body submits and fights, changes and compensates.

Resonance is the process by which a wave of sound is strengthened by the vibrations it induces in a neighboring object. Alone, a vibrating violin string makes barely a whisper. But when attached to its body, the harmonics produced by the string find their identical frequencies hidden away in the mass of hollow wood, and the air contained within. Together they vibrate and sing out. It is harmonic empowerment.

By describing my own narrative with chronic illness I aim to reveal the harmonics — those invisible and seemingly infinite life variations spawning from a disability or illness. Yet this alone would be the equivalent of the lonely violin string. Yes, the note is there, but we can only hear it if it resonates in the body of another.

The piece of music I’ve written will be featured at the end of my short documentary film, sung and played by those with parallel tales of pain. Only through this collective performance can the harmonics of pain induce resonance in the bodies of others, and sing out for all the world to hear.

Learn more at The Resonance Project.