Written by : Max Bennett. Photos provided by Derek Dorsey
Philadelphia — Derek Dorsey has been a fixture in the Philadelphia music scene for more than two decades. Chances are, you haven’t heard of him, but you may have attended one of his shows.
The 56-year-old has booked shows at beloved venues such as the Electric Factory (now the corporate “Franklin Music Hall”), The Fire, Underground Arts, Khyber Pass Pub, and The Ave since the early 2000s.
Artists he booked to perform at these intimate venues include Jason Mraz, Dr. Dog, Method Man, Sufjan Stevens, Kurt Vile, and The War on Drugs. These acts, now known nationally, were cutting their teeth at Dorsey-booked shows. Bill Kreutzmann of the Grateful Dead once played a gig at The Fire and told Dorsey it was the smallest room he’d ever played — and he meant it in the best way possible.
Dorsey also went on to manage the band Townhall and others.
This weekend, he and WXPN are putting on a four-day music festival in Philadelphia. It will be Dorsey’s first in years, after a mysterious medical illness left him feeling as though he were being tortured day in and day out.
A Life Upended
A few years ago, Dorsey’s life was upended by a rare neurological condition that caused his nerves to “fire randomly and painfully.”
“By the end of 2019, the same year I opened The Ave, my health was declining rapidly,” Dorsey said. “My nervous system was breaking down. I was telling [my partners at The Ave] I needed to know if they could run this without me.”
By February 2020, Dorsey was in and out of the hospital. By March, the number of hospital visits he required grew. Then the COVID-19 pandemic hit, and healthcare facilities across the nation began shifting their focus to treating patients battling the deadly virus.
“I couldn’t do anything,” Dorsey said.
While hospitals were treating COVID patients, Dorsey’s treatment was sidelined, partly due to the mystery surrounding his condition.
“I was seeing doctors all over the country, and no one could figure out exactly what was going on,” he said.
Dorsey traveled to the Mayo Clinic, one of the most respected healthcare systems in the world.
“They said, ‘You have one of the most hyperexcitable nervous systems we’ve ever seen,’” Dorsey said. But they still couldn’t figure out why he was suffering from this elusive condition.
Everything Dorsey knew about his life had ended, and his condition was worsening.
A former runner in high school and college who later turned to cycling — going on to become one of the top African American cyclists in the country in his 40s — Dorsey could barely walk at this point.
“I had to use a walker at times, which is crazy,” he said. “All my limbs had completely atrophied, completely weakened.”
Living in Pain
Dorsey felt as though he was being tortured constantly.
“It felt like I was living in a black ops site,” he said. “I knew multiple times a day I’d be in the worst pain possible, but I didn’t know when. I was in the darkest place possible.”
But his strong connections with the region’s music community helped pull him through. His comrades rallied behind him and began the We Live On concert series, which stemmed from an idea to create a support group and resources for people going through rare neurological illnesses.
The We Live On shows, which have taken place at venues like Ardmore Music Hall, 118 North in Wayne, and the Ruba Club, have been running for over two years.
“I credit longtime friends and promoters/bookers Jesse Lundy and Chris Perella for launching the series,” Dorsey said.
“Initially, I wasn’t sure if I wanted to be out, sharing my disease with the world,” Dorsey said. “But those guys kind of had interventions for me. If this was one of us going through what I was going through, they said, we’d do the same for you.”
Bills for We Live On shows have included Langhorne Slim, Hezekiah Jones, Talib Kweli, Ron Gallo, Sheer Mag, and more.
“It was an awesome period of my life,” Dorsey said. “That’s why so many musicians and people came out to We Live On benefits.”
The Search for Answers
During all this, Dorsey and his doctors were still in the dark about what was causing his pain.
He took matters into his own hands, opting for holistic treatments, switching his diet to vegetarian, then vegan, and finally raw foods only. He even lived naturally in Hawaii for eight months.
“I was looking for an answer, but I couldn’t find a solution,” Dorsey said.
Then, he connected with Dr. Marinos C. Dalakas, a 77-year-old physician at Jefferson Health.
“It took someone with 50 years of experience in this field to begin to figure this out and then build a team of amazing doctors,” Dorsey said.
After a series of tests, it was determined that Dorsey was suffering from both small fiber and large fiber neuropathy. According to the National Institutes of Health, large fiber neuropathy results in the loss of joint position and vibration sense, while small fiber neuropathy impairs pain, temperature, and autonomic functions.
Ultimately, Dalakas diagnosed Dorsey with Chronic Inflammatory Demyelinating Polyneuropathy.
Dorsey began treatments, including infusions of antibodies that targeted the negative antibodies attacking his nervous system.
“It was the first major domino to fall,” he said.
He also underwent surgery on his spine and, as part of his treatment team, Dalakas brought in Dr. Anne Louise Oaklander of Harvard University to Dorsey’s treatment team. Dorsey, who had been heavily researching neurological conditions and experts in them, previously read her work.
Not long after, He became a VIP patient at Harvard’s general neurology department.
“She became a big part of my life,” Dorsey said.
The team figured out that Dorsey had multiple neurological diseases attacking the same system. Over the past year, Dorsey has had surgery with different doctors, which has helped manage his condition.
“I was living in a bubble until last spring; no one could come in,” he said. “Finally, the bubble burst, and I got to get outside.”
A Return to Music
Now, Dorsey is preparing for his first music event since the We Live On shows, many of which he was unable to attend.
The Fallser Club, located at 3721 Midvale Ave. in Philly’s East Falls neighborhood, will host The Fallser Winter Music Festival, with four shows scheduled for Thursday, Friday, and Saturday this weekend.
“I never thought these things were possible,” Dorsey said of getting back into booking events.
While he’s back in the game, he said this time around feels different.
“There have been a few back-and-forths,” he said of booking the festival. “But it was so amazing to be in that space again, booking bands, being with my friends and the bands I love.”
The festival spans four nights, which feels daunting to Dorsey.
“I have to go out four nights. I haven’t been out three nights in a row,” he said with a laugh. “I don’t think I’ve even been out two nights! It’s a little daunting, so hopefully the gods are in my favor.”
Thursday’s bill features Cookie Rabinowitz, Leana Song, Pep Rally, and Nick Lombardo & the Decent OK. Friday’s lineup includes Keystone Breakers, The Fractals, and Heather Hurlock. Saturday’s performances include the Andrew Lipke Trio, Dirty Dollhouse, and Emily Drinker. The final night will feature reggae acts San Noche, I Yhan I Arkestra, Rootsettaz, and DJ Dread Head. Sponsored by WXPN and Mirror Image Media
Dorsey still faces many physical limitations, but he is grateful for the support of those who’ve helped him on his health journey.
Get tickets for The Fallser Winter Music Festival online here.
