23-Year-Old With a Chronic Condition Produces Cherished Music: An Interview

Imagine a scenario where you find yourself unable to rise from your bed. Perhaps you’ve gone through something similar, akin to a bout of flu. It can be quite unpleasant, yet you have the reassurance that you will eventually recover and return to your regular routine. But what if that were not the case? What if you could never return to jogging, whipping up meals, or even ascending stairs? This is the harsh truth faced by individuals diagnosed with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). This intricate disorder presents a multitude of symptoms that significantly disrupt a person’s everyday life. Those affected might endure overwhelming fatigue and exhaustion that isn’t alleviated by rest, cognitive difficulties (“brain fog”), widespread bodily pain, sensory overload, and a host of other issues.

Sebastian Gisperg is a 23-year-old grappling with ME/CFS. He has been confined to bed for almost two years, spending 99% of his time there. In his previous active life—before his condition took hold, he was instructing others in surfing—creating music is the sole activity Gisperg can still engage in. Though he can’t do it daily, the electronic music he produces resonates with people. Gisperg recently celebrated reaching 250,000 streams on his debut album, and in a widely shared post on Reddit, users congratulated him on this achievement and expressed gratitude for his efforts to raise awareness about ME/CFS.

Gisperg has a passion for making music, but he must tread carefully to avoid triggering Post-exertional malaise (PEM), which occurs when he exceeds his energy limits. “The real hope I receive is when I’ve rested adequately,” he shares regarding his music creation, “I catch those 3-10% improvements where I feel better, enabling me to create music for an hour or perhaps sit outside for 10 minutes. That’s what fuels my hope and strength to push through the difficult days.” My Modern Met had a conversation with Gisperg about his life prior to his diagnosis, his current situation, and the music that keeps him connected. Scroll down for our exclusive interview.

You’ve mentioned online that at 23, you’ve been primarily bedbound for almost two years. Could you recount your journey to receiving your ME/CFS diagnosis?

Two years ago, I was teaching surfing in Sydney, spending countless hours in the ocean daily. Now, at 23, I am 99% bedbound due to ME/CFS. It all began with what seemed like just a typical flu.

The harsh reality of ME/CFS is that it frequently starts with a minor viral infection, from which one never fully recovers. I was in peak physical fitness, but suddenly even a brief stroll would leave me feeling drained for days on end. After two months of persistent illness, I began to realize that something was profoundly wrong. This wasn’t the person I used to be.

Not long after experiencing a major crash following a light stretching routine, I recognized that my journey had come to an end. The following morning, I arranged a flight back home to Vienna for a comprehensive evaluation. I’m fortunate to have medical professionals in my family; however, even with that advantage, it took a year filled with numerous tests and uncertainty before I finally received my diagnosis: ME/CFS. This timeline is actually considered swift, as the average diagnosis process can span up to five years, largely due to many doctors’ lack of understanding of the condition.

Your diagnosis and the subsequent shift in your reality led you to concentrate on music. How would you depict your music to someone unfamiliar with it?

Being 99% bedbound now, creating music on my laptop is one of the few activities that still brings me happiness. To me, music is all about invoking emotions: it can transport you to a first love on a summer evening or to the sorrow of a heartbreaking separation. I aim for my songs to spark nostalgia for cherished memories with friends as well as instill hope for positive experiences in the future. Given my current health situation, music becomes a means to relive life while simultaneously anticipating what’s next. In my case, that sentiment is even more pronounced, and I believe listeners can truly sense my yearning for life in my music.

What did it feel like to achieve the milestone of 250,000 streams on your debut album?

Achieving 250,000 streams on my first album within just a few months was astonishing. I didn’t have the energy for promotion; I simply released it and shared about it on my social media. With my second album, things began to escalate dramatically. A few posts on Reddit remarkably reached over a million individuals.

I received countless messages from kind strangers urging me to persevere, praising my music and my resilience, which was heartwarming. Observing those numbers increase while I was lying in bed felt surreal. My body was weaker than ever, yet my music was out in the world, touching people I had never met. It was a powerful experience, feeling like I could still make an impact while facing a disability.