“Hippocrates introduced the historical conception of disease, the idea that diseases have a course, from their first intimations to their climax or crisis, and thence to their happy or fatal resolution. [He] thus introduced the case history, a description, or depiction, of the natural history of disease. Such histories are a form of natural history – but they tell us nothing about the individual and his history; they convey nothing of the person, and the experience of the person, as he faces, and struggles to survive his disease… To restore the human subject at the centre – the suffering, afflicted, fighting human subject – we must deepen a case history to a narrative or tale: only then do we have a ‘who’ as well as a ‘what’, a real person, a patient in relation to disease – in relation to the physical.” – Oliver Sacks (The Man Who Mistook His Wife For a Hat) 

I am a storyteller of sorts. I write music for movies. I write musicals, screenplays, short stories and, at the moment, I’m making my first documentary. I’ve always believed that stories – like math, history and physics – exist independently of our recognition of them. It’s the role of the storyteller, much like the archaeologist, to extract from the chaos of the world, a pattern: a greater truth. 

Okay, so Oliver Sacks says we need to bring storytelling back to medicine and I’m saying stories exist everywhere, we just have to look with the eyes of a storyteller. But what good does this do for a patient living each day – in pain, depressed, feeling helpless and hopeless! – with an invisible illness?

I’m not going to answer this just yet. Instead, I’m going to tell you a story. 

It’s April 12, 2015, and I feel a wave of fog come over my brain. So I do what I always do when a headache appears: chug a bottle of gatorade and go to sleep. I wake up the next morning and try to get out of bed – a rather tricky task, I soon realize, when I’m physically unable to lift my head. As if picking up a watermelon, I grab hold of my head as I try to sit up. Bad idea. The pain is unimaginable. My brain feels like a slowly inflating balloon, covered in hardened papier-mâché, about to burst. In medical terms (as I will later learn) the membrane surrounding my spine and brain has ripped, causing cerebrospinal fluid to leak and my brain to sag, squeezing my brainstem against my skull. But at this moment I am a medical mystery and a bedridden college sophomore at the very beginning of what will become my medical odyssey. 

In the traditional three-act narrative framework of our favorite books and movies, this would be ‘Act One.’ Here we are first introduced to our main character (me), the setting (a college campus) and some sort of problem that the character wishes to resolve (take a guess!).

The first doctor I see refers me to mental health services. Over the next four years I will see 56 doctors across six states and two countries. I will be hospitalized five times and will be prescribed over thirty different medications. 

Now I am a junior in college, perpetually foggy-headed and plagued with dementia symptoms like memory lapses, tremors and incontinence. I am always on the verge of vertigo – triggered by anything from scrolling on a phone to subtle temperature increases or a slight turn of my head. I am prone to head rushes (kind of like when you get up too fast) that can last up to thirty seconds. My cardiologist is stumped as to why my blood pressure drops when I’m active and shoots up the moment I stop. Mind you, when I say active, I mean relatively active. At this point, I can’t walk up a flight of stairs without becoming faint and winded. 

I am a senior now and a new, rather bizarre phenomenon has emerged in which I am suddenly unable to speak. The words and sentences form in my head but when I go to speak, nothing comes out. Sometimes fifteen seconds elapse before any sounds emerge from my mouth. 

I graduate, move to LA and set up a studio to continue my work composing music for film. At an appointment with a UCLA orthopedist specializing in the spine, I am told, once again, that my imaging results are unremarkable. I ask him if he’s taken into account the measurement of my clivo-axial angle or my Grabb-Oakes line. He dismisses these as insignificant, tells me I’ve been reading too much online and then proceeds to say, “If you had a problem with your spine, you would feel it in your spine, not your head. If you have pain in your head, then you have a problem with your head.” 

“But they are connected!” I plead, desperately. To no avail… 

I get home, download the free trial for a computer software to view my various MRI and CT scans, determined to find what 15 radiologists did not. Following a hunch, I spend the next two weeks reading every medical paper I can find on cervical and atlantoaxial instability and their connection to Ehlers-Danlos Syndrome (EDS). I compare the significant measurements presented in the case studies to the measurements I take from my own scans. And I find it. The truth speaks in millimeters and degrees, revealing what has been there all along: severe instability between my skull and the first four vertebrae of my cervical spine. Quite literally, my head is not screwed on tight enough! 

This would typically mark the midpoint of the story arc – the point at which the stakes are raised and the full extent of the obstacle revealed, forcing the protagonist to take action. At the end of ‘Act Two’ comes the climax – in my tale this is surgery. Physically, it is the point at which the stakes are highest. It is the pinnacle of risk in the story thus far. But it’s also the narrative climax. Beyond this point we will learn whether or not the protagonist reaches his goal…

After being officially diagnosed with EDS and the associated spinal instabilities, I undergo surgery – a fusion from my skull to the second cervical vertebrae in my spine. And it works! Now we begin  the third (and final) act. With my neurological symptoms resolved, I am left to recover from the surgery itself. But as I look ahead at my re-entry into ‘normal life,’ I grapple with the knowledge that I have an invisible chronic illness, and my life will never be ‘normal.’ I will live like a game of whack-a-mole, giving a good ol’ knock to the medical problems that will inevitably arise in the future, resolving one until the next one pops up. 

Great, I’ve told you a story, a chronology of events that follows the basic structure of a Hollywood blockbuster (and I’ve been so kind as to spare you the accompanying melodrama). 

Did I realize as the weeks, months and years unfolded that I was living in such a tried-and-true narrative framework? Of course not. I walked into every doctor’s appointment thinking and hoping it might be my last. While living, we seek resolution. Rarely do we seek conflict, specifically conflict of a seemingly unresolvable nature, just for the sake of narrative intrigue in the memoir that we will one day write. The narrative is shaped afterwards – in hindsight. 

* * * 

There’s a reason why ‘patient’ is both a noun and an adjective. A patient is the ultimate embodiment of patience – an ability to remain unwavering and hopeful in the presence of adversity. To remain faithful to one’s character before the looming cloud of the unknown. The word ‘character’ first appeared in ancient Greece (around the time that Hippocrates was practicing medicine) and was used to describe a symbol or imprint on the soul. The idea of a character as a part of a story or play came nearly 2,000 years later! So just as the idea of a patient comes from one who is patient, the idea of a character comes from one who embodies their own character. 

Now that’s all well and good in theory but recovery is hard! There’s the physical pain – the sharp, burning, shooting, itching, aching and throbbing – and there’s the discomfort – the clicks, pops, nail-on-chalkboard squeaks, restlessness and all consuming fatigue. For me though, the greatest challenge was psychological. 

My mind is a bit like a pressure cooker. It needs to release steam regularly (usually by writing music or stories) so that it doesn’t explode. During this period of recovery, reading became my ‘pressure release valve’. As my body, confined to the couch, battled the pain, my mind was free to go exploring in worlds of the books I read. One book in particular, Letters to a Young Poet, proved to be deeply inspiring and uplifting, as if the author – Prague-born poet Rainer Maria Rilke – was speaking directly to me. Not only should I be patient – as someone who is sick – but I should be confident – like someone who is recovering.

No story can get past even the first act with only a single character. And while some characters bring conflict and ill omen, there are always those who inspire progress, give hope to narrative development and help the protagonist achieve resolution. So doctors, nurses, surgeons, therapists, hospital administrators and technicians, assistants, researchers, benefactors, families, friends and kind strangers, thank you. 

For those of us living with chronic illness whose pain, though invisible, tries to transform our lives and shape our narratives, it is not enough to be patient – to be a patient. We must live like storytellers, hungry for answers, relentless in our quest for the resolutions that we will write into existence.

To learn more about Ehlers-Danlos Syndrome: https://www.ehlers-danlos.com/what-is-eds/

I spent seven months filming my daily life with the goal of creating a documentary film about living with chronic illness. 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 or disability. Musicians simply record a video of themselves performing their individual part to my piece ‘Resonance’ and upload it to the project folder. I will then edit together the video submissions to form the ensemble, to be featured in my documentary.