KENT, Ohio — A virtual benefit concert will be held via live stream Friday, January 7, to raise money for a Northeast Ohio musician living with a chronic illness.
Hal Walker is a musician living in Kent. He plays many instruments, and on his TikTok account @banakula, where he has 1.5 million followers, his talent as both a singer and an instrumentalist is obvious.
For 30 years, Walker has been living with a chronic, poorly-understood illness.
“I had been a long-distance runner and a long-distance cyclist,” Walker said of when his symptoms began suddenly in 1992. “I was having a stressful couple weeks, and one morning, I woke up on a Saturday morning in May with weird symptoms in my body. And those symptoms never went away.”
He added, “I’ve been to many doctors and many health professionals and really have not gotten a whole lot of help. It's been a real mystery illness.”
Walker eventually received a diagnosis of myalgic encephalomyelitis/chronic fatigue syndrome, abbreviated as ME/CFS.
“The first time I ever heard of chronic fatigue syndrome, I knew that's what I had,” Walker said. “It's very difficult to get a diagnosis of myalgic encephalomyelitis. Basically, once you rule everything out, you might be able to get that diagnosis. But when I hear the stories of other people living with ME/CFS, my story is the same and it's been 30 years of living with this.”
While it was a difficult diagnosis to receive—“Suddenly, I went from being a distance runner to where I couldn't run across the street”—the symptoms worsened gradually for the most part and were manageable, until this past summer.
“For whatever reason, this summer, the summer of 2021, I just experienced crash after crash after crash, and it has brought me to a place of being bedridden and needing full-time care,” Walker said. “I am someone who loves life and who has lots of passions and interests, and there's a lot of work left for me to do, so this is not convenient.”
Walker described previous “downturns” in his condition: in 2007 when he went to Thailand, in 2013 when he was in an accident. Each time, he said, he had to get used to a “new level of normal.” But this particular new normal is “pretty rough,” Walker said.
Walker’s three close friends from college at Northwestern University came from out of state to visit him when they heard he was getting sick.
“They stayed with me for weeks and helped around the house and then had this idea to put on this fundraiser,” Walker said.
The fundraiser, “A Love Song for Hal,” will stream at 7 p.m. Friday. Viewers can register for free here.
Walker is well-connected in the music world, especially after hosting a show called This Moment in Music for the last year.
“They just went to my list of musicians for This Moment in Music and started asking and pulled together an amazing lineup of artists for Friday night,” Walker said.
That includes Chris Martin of Coldplay, who discovered Walker’s music on Instagram (@halwalkermusic) and reached out to him.
“We had a couple of phone conversations, and when I texted him, letting him know what was going on with my health, he said, ‘How can I help?’ And I said, ‘Well, you could play at this fundraiser we're having on [January 7], he said, ‘I’d love to do that,’” Walker said.
He added, “One of our acts is a megastar, and then there's 25 other acts that are equally as awesome, but just not as well-known.”
Walker said he feels “so blessed, so honored” to have a community of people coming together to help him. He knows that’s not the case for many people living with ME/CFS.
“They call the hashtag #millionsmissing, and all the people in the world that don't have a caretaker, that don't have friends that are doing a GoFundMe for them, and all the people who are going to the doctor and not getting the diagnosis, just not getting help,” Walker said. “This illness is just so poorly recognized and poorly funded and just not taken seriously. And I've been experiencing that for 30 years, but even more so now because it's so severe.”
Walker highlighted the low quality of life that comes along with ME/CFS.
“It’s a chronic illness with no cure […] and no prognosis. And people living in just utter, you know, real suffering,” Walker said. “Comparatively speaking, it’s not one you want to get.”
A portion of the proceeds from Friday’s benefit concert will go toward ME/CFS research at the Open Medicine Foundation.
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