The mother of a teenager with Tourette’s has said that Lewis Capaldi’s Glastonbury performance left her in tears because of the “amazingly powerful” impact it will have on raising awareness for the condition. On Saturday, Capaldi, who himself has Tourette’s, a neurological condition which causes involuntary muscle movements and sounds known as tics, sang ballads including Someone You Loved to Glastonbury festival-goers while performing on the Pyramid Stage.
During the performance, he stopped singing due to losing his voice earlier in his set and repeated tics, and the crowd responded by belting out the lyrics of his hits to show their support. For Laura Hummersone, whose 19-year-old son Harry has the condition, the performance had an emotional impact on them.
“Watching Lewis yesterday, in that moment, I think he did more for Tourette’s than any charity or education on the topic in all the times I’ve known about Tourette’s. I was in tears,” the 50-year-old who works in the criminal investigation department of the police force said.
The pair watched Capaldi’s performance on TV together from their home in Farnborough, Hampshire, with Ms Hummersone adding that Harry gradually started smiling from seeking solace in the fact that he and Capaldi both had similar tics. “[Capaldi] was openly ticing and my son tries to suppress his most of the time when he’s out, which means that when he comes home, he has these huge tic attacks where he can barely do anything”, she said.
“Some of the tics that Lewis was doing were tics that my son does on a regular daily basis, jerking the head.”
Harry was diagnosed with Tourette’s when he was five and a half and Ms Hummersone said that her son’s tics were so bad at one point that she had to quit the job she had at the time for 12 years to look after him. “Because of his head tics at one point, he couldn’t stand up”, she said.
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“It was so violent and also he couldn’t feed himself… and sometimes he would hit his head on the door frame and knock himself out. That’s what Tourette’s is like to live with.”
Ms Hummersone said she was particularly struck by how much the crowd supported Capaldi. “The acceptance, tolerance, understanding, empathy and compassion which the crowd showed yesterday was phenomenal”, she said.
She added: “Harry’s friends have been really sweet about his tics, but during primary school we had parents taking their kids out of school because they didn’t like the ticing. “I wanted Harry to see the love from that crowd – nobody cared about Lewis’ ticing, they were carrying him through and little things like that show it is nothing to be ashamed of. That’s the big thing.”
She said that Capaldi also did a “brilliant” job of highlighting that Tourette’s does not necessarily mean that you will have swearing as a tic. “Most of the time, it isn’t about swearing”, she added.
“I think the condition is still so misunderstood and people think you only tic when stressed. “With Lewis, he was ticing doing something he loved – sometimes it distracts you from what you’re doing, other times it doesn’t.
“So his performance was amazingly powerful.” The “powerful” performance also had an impact on 11-year-old James Craven, who was formally diagnosed with Tourette’s on Friday.
He watched Capaldi’s performance on TV with his mother Kate at their home in Teesside, which prompted him to write a letter to the singer to tell him: “I like that you have Tourette’s and you keep going with it.”
Ms Craven, a 42-year-old teacher, said: “[James] sat there this morning while I was doing the ironing and wrote this letter without any prompting or anything like that. I was really proud of him because it absolutely came from his heart.”
Other lines from the letter – which was written on A4 lined paper – include: “Whenever I see you struggling but continue going, it brings a smile to my face” and “you are a role model to everyone with Tourette’s and it shows them that they can be successful”.
Ms Craven said James is a fan of Capaldi and is even a musician himself as he’s learning the piano. When the crowd at Glastonbury sang Capaldi’s lyrics on Saturday, so did James.
“He was singing along, the whole living room was singing along with him”, she said. “Also, everybody watching held their breath a little bit, I think, because James knows what having tics is like and when attention is drawn to them, it just makes them worse.”
Ms Craven added that when her son was diagnosed with Tourette’s, he was “absolutely over the moon”. “We had a little celebration”, she added.
Ms Craven said she hopes Capaldi’s performance raises awareness for Tourette’s. “I would like people to see that having a condition like Tourette’s has a massive impact on your mental health and sometimes it’s absolutely fine, but sometimes it isn’t.
“James did his SATs and supressed his tics and afterwards, his body was just broken and he slept for 13/14 hours. I’d also like people to be more aware of the fact that tics are not necessarily the extreme ones and that you can be successful with the condition and it is also only one facet of who you are.”
