Finding Solace in Schubert When Your Body Is Falling Apart

CW: Below follow photos of extensive skin lesions. While not bloody or particularly gory, they might not be for the squeamish, so be advised.

On June 20, 2022, I looked down at my legs after taking a shower and saw what looked like a handful of bug bites on my thighs. “That’s weird,” I thought. “I don’t remember getting bitten.” I chalked it up to ugh-bugs-and-Philadelphia-summer-humidity-what-are-you-gonna-do, and went about my life.

The next day, I noticed that the bites I’d seen earlier were bigger, redder, angrier, and that there were new ones, now also on my upper arms. Disconcerted, I put every piece of our bedding through a scalding hot wash (despite my husband not experiencing a similar problem). I tried to tamp down my burgeoning nervousness.

Over the next three weeks, my body exploded, progressively self-immolating in dramatic fashion. More bumps showed up every day, annexing more and more of my body—lower arms, then lower legs, then hands, then feet, then back. After the bumps appeared, they progressed to lesions, growing larger and more irritated before coalescing into red, scaly patches. Terrified, I booked it to the dermatologist, who took biopsies, and suspected it was autoimmune related. After several days, I went back for the results—subacute cutaneous lupus erythematosus, idiopathic or drug-induced. Cue panic. What on earth caused this? Does it mean I have lupus now? When is this going to stop?

I have suffered from an autoimmune disease, Sjögren’s Syndrome, for over ten years, and while it definitely has its challenges, it is downright polite compared to the war my body was waging. Once I had the biopsy results in hand, I was not able to get any real help from my rheumatologist beyond her saying I should start taking Plaquenil again, and that the results didn’t necessarily mean I had lupus. Okay, but what was going on? I was luckily able to snag an appointment with her near the end of July (nothing short of a miracle; she’s usually booked up a minimum of six months in advance), but that was weeks away. The rate at which my body was attacking itself and the speed at which I was worsening were terrifying. I had no idea when, if ever, it would end.

If my body had lit itself on fire, my brain was constantly, malevolently pouring gasoline on the flames. I have never been so acutely scared, for so protracted a period of time, in all my life. I was unable to stifle the constant, high-alert levels of panic. Adrenaline coursed through me at nearly all times. Breathing didn’t help. Usual surefire distraction techniques didn’t help. CBT sure as fuck didn’t help. I often found myself just shaking with fear. After showering—a time when I had to actually confront my body, when my best coping mechanism was to try my best to ignore it—I often could do no more than retreat to bed for hours, consumed with sadness and worry. For a person who has experienced no shortage of dark nights of the soul, this was the longest and darkest of them all.

L–R: How it started…how it’s going.
[Alt text: Carolyn’s, a white ciswoman, thighs and arms with a handful of small, red bumps, and then her legs and arms covered in large, angry lesions a couple weeks later.]

On the days that I could muster some energy—physical, mental, emotional—to do anything but worry, I found myself drifting to the piano, craving the emotional release I knew I could expect from old friends like Robert Schumann and Felix Mendelssohn. For all their problematic tendencies, the Romantics are the ones I gravitate toward every time. Hell, I centered my entire professional existence around them for over a decade. They are so delightfully extra in a way that speaks deeply to me. I have always been a person of Big Feelings, and I need music to match. And on those days, my feelings were so much bigger than my body could handle, and I needed to externalize them—to get them out and away from me, but also to hold them close and confront them. 

I have been in an uneasy place for awhile now about my identity as a pianist. Even in my so-called prime, I was never a virtusoso. You were never going to get a barnburner of a Liszt performance from me. But I was technically good, and more than that, I was a sensitive and thoughtful musician. (And I was a helluva collaborative pianist.) Playing the music I loved, I truly felt like a poet at the keyboard. So it’s hard for me now to be so out of practice, so rusty, so unable to easily create beauty. When we moved to Philly (…five years ago), I had aspirations of finally learning repertoire again. And I never have. Instead, when I do decide to sit down on the bench, I noodle endlessly, directionless, never committing to anything and staying in the liminal space between sight-reading and just bad performance.

I, like many, now also have a complicated relationship with classical music. I can’t imagine a world in which I no longer love much of this repertoire—some of these pieces live deep in the marrow of my bones—but I am so jaded about our deeply flawed institutions, and realize that my love of certain composers and pieces is also flawed because it has been shaped by those institutions. And yet. Robert Schumann remains my area of my expertise and my forever problematic fave. And I have always felt—and will always feel—a deep, abiding kinship with Franz Schubert. This is perhaps not surprising given my affinity for befriending and/or dating gay men. His music has always been so special to me, and my heart actually aches when I think about the circumstances of his life. How difficult it must have been for him as a gay man in early 19th-century Vienna. How scared he must have been when he became so sick and then died too young. I feel so very protective of this person whom I have never met and could never actually protect.

Super arty shot of Henle Urtext score on my music rack

Schubert’s Sonata in A minor, D. 784 first became known to me as an undergrad, glibly referred to in my piano literature class by the apparently well-known epithet “Syphilis Sonata.” In a room full of teens and early twentysomethings, this of course prompted snickers—what assholes we can be before our brains fully develop and we find true empathy for others, especially when we realize that historical figures were actually people just like us. Schubert composed the sonata in February 1823, and it was published 11 years posthumously. It received the “Syphilis” moniker because throughout the month of February 1823, Schubert was largely housebound due to illness, and many scholars suspect it was syphilis, then an incurable and horrendous disease. Though he would at times see improvements in his health, February 1823 marked a turning point for Schubert, who would steadily decline until his death at 31. 

Alfred Brendel plays Franz Schubert’s Sonata in A minor, D. 784

I’ve poked at this sonata off and on over the years, but have never before felt prompted to spend a long amount of time with it. But in this new context, deeply afraid for my health and of my own body, it called to me, my fingers drawn magnetically to the blue Henle Urtext score. And when I started to play through it, it just hit different, as the youths say. The starkness of the primary theme, the dirge-like quality. It bespeaks a haunting, the specter of death that lurked around the corner for Schubert. And yet! The moments of hope that convince you that all is not lost, that fill you with warmth and convince you to hold on. Schubert, more than any other composer in my opinion, was preternaturally gifted at making even formally expected moments sound miraculous (For my fellow music nerds: take, for example, the secondary theme in the first movement. On paper, it is nothing extraordinary: a contrasting theme in the dominant key area. And yet, in the context of what precedes it—a miracle.) 

As I inartfully read through the piece, funneling the unbearability of my despair into Schubert’s own, I had never felt more closely linked to the composer. The terror, uncertainty, and desperate longing for hope I felt was unlike anything I’d experienced before, and I heard the same echoed back to me in Schubert’s notes. It was a catharsis of the highest magnitude, and I wept (tearlessly—thanks, Sjögren’s). And so I returned, each day, to the sonata, seeking the solace it had brought me. 

It is usually a fallacy to map biography onto composers’ works unless there’s corroborative documentation. Stormy music ≠ stormy life circumstances, not necessarily. And though I am a musicologist, I am not a Schubert expert, nor am I well read in all of his diaries and letters. I cannot prove that Schubert expressed his feelings about his illness in this sonata, but man oh man, can I believe he did. In reading this letter to a friend in March 1824 (excerpted in Eric Sams’s Musical Times article reposted on his website), it is difficult for me not to hear the sonata as Schubert giving voice to a portent of things to come:

I feel I am the unhappiest, most wretched man in the world. Imagine a man whose health will never be right again and who by despairing about it always makes the matter worse instead of better; imagine a man, I say, whose most auspicious hopes have been brought to nothingness, to whom the joy of love and friendship has nothing to offer but pain at best, whose enthusiasm (at least of the creative kind) for beauty threatens to vanish, and ask yourself—is not this a wretched unhappy man? “Meine Ruh ist hin, mein Herz ist schwer, ich finde sie nimmer und nimmermehr”—so indeed I can now sing every day, for every night when I go to sleep I hope never to wake again, and every morning serves only to remind me of the previous day's misery.

Despair, worry about health never improving, your brain wreaking havoc and making everything worse…never more relatable.

One day, after weeks of waiting and frayed nerves, my rheumatologist finally called me. She explained what I was experiencing was likely drug induced (my PCP had prescribed several rounds of a medication that is, apparently, known to prompt this kind of response in folks with Sjögren’s). She said that drug-induced or even idiopathic cutaneous lupus does not necessarily mean one now has systemic lupus. She said it was likely things would start to calm down soon, but we made plans for me to go on an immunosuppressant in case they didn’t. I finally, finally had some answers. And I wept (tearlessly, again), this time from relief.

Soon thereafter, I did indeed turn a corner. When I woke up, I had fewer new lesions, and that gradually dwindled to none. My pre-existing sores grew less red, less angry. I am healing. I am healing, and I truly did not know if this would come to pass. 

The road to recovery is long—my dermatologist says it will take upwards of a year for my skin to fully heal, and it’s crucial that I avoid sun exposure. At this stage, it’s unclear whether I am at risk of future flare-ups, or developing systemic lupus. And that’s just the physical aspect of things. This time in my life has been extremely traumatic, and I know it’s going to take time to heal from that as well (next stop: back into therapy and finding a new PCP). And so, as I embark on the next stage of this journey, I think perhaps it’s time I finally commit to really learning some repertoire. And what better music could I choose to give myself to, than the piece and the composer who have given me so much, at the time I needed it most.

Thank you, Franz. You have no idea how much.💜