Through social media, this Kent musician documents life with chronic fatigue syndrome
I've known Hal Walker for around 30 years.
But until late last year I didn't really know that he was dealing with a debilitating and poorly understood chronic illness, Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, or ME/CFS.
Last September the disease he'd been managing for years inexplicably took a turn for the worse. It's not just that he’s tired all the time, or working too hard or not taking care of himself.
“It's a different kind of fatigue, a different kind of illness," Walker said.
“When I go to the doctor I'm perfectly healthy. Blood pressure is perfect. All the tests are perfect. But for some reason I'm 90% bedridden.”
He describes it as a perpetual flu-like weakness combined with an overly sensitive nervous system.
“My ears are ringing," Walker said. "My brain is very sensitive. My eyes are very sensitive looking at screens...”
The only respite is complete bed rest with darkened shades and a stimulus-free environment.
A social media lifeline
Before the pandemic, Walker made a living performing in schools as a teaching artist. But his discovery of TikTok a few years ago led to a new outlet for his music and a new audience.
“I got in right under the radar and made a name for myself before the pandemic started, and now I have 1.6 million followers,” he said.
Walker plays guitar and piano. He's a singer and songwriter, but his specialty is playing instruments that fit in your pocket, including the jaw harp, harmonica and ocarina.
His breakout hit features an obscure instrument from Southeast Asia, a sort of bamboo harmonica called the khaen.
The tune is called low key gliding. The groove caught fire with young TikTok artists and producers whose remixes have attracted millions of views.
One of the fans of low key gliding is Chris Martin, frontman for the band Coldplay. Martin recently met with Walker for a lesson on the khaen.
A video of the get-together was posted, of course, on TikTok.
But this is not the story I'm here to tell. That story starts in a different time and place.
Last September, he reached out to friends to help him survive his debilitating episode of ME/CFS. I was worried about Hal, so I did what any radio producer friend would do: I gave Hal a microphone and a recorder and asked him to record what he was going through.
Listen above for his story of living in a body in rebellion.