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Louise Thomas
Editor
A quadriplegic musician whose rare condition caused her spinal cord to look like “acid had been poured” on it now composes music using her tongue.
In December 2014, Grace Fisher, now 26, who lives in Santa Barbara, California, was celebrating her 17th birthday with friends and family, but just hours after welcoming guests, she found herself in hospital unable to walk or breathe.
Doctors diagnosed her with acute flaccid myelitis (AFM) – a rare condition which affects the spinal cord – and, according to the Centres for Disease Control and Prevention, there have been only 756 confirmed cases since August 2014.
Although Grace is paralysed from the neck down, requires a ventilator to breathe at night, and needs help feeding, washing and dressing herself, she is still able to continue her passion for music.
Using a mouth-operated joystick, Grace can input individual notes into a computer programme with her tongue, creating scores of music which are played by local orchestras, and she loves seeing her work come to life.
She has set up her own foundation and starred in her own documentary, but now, being a Disney fan and having felt like Sleeping Beauty herself, wondering if she would wake up and her life would “go back to normal”, she dreams of composing music for a Disney film.
Grace told PA Real Life: “Because it all happened on my birthday, I definitely felt like Sleeping Beauty.
“With my family, around the one-year anniversary, we were all wondering if I’ll just wake up and everything will be as it had been – it will all just disappear and everything will go back to normal.
“Life for me isn’t a fairytale, obviously, but that’s definitely how it felt – and now I have all these people caring for me, like Sleeping Beauty with her fairy godmothers, it feels very similar.
“I’d love to work on films or movies, but my ultimate dream is to work on a Disney film.”
From the age of five, Grace played the piano, followed by the cello and guitar – and she practised her instruments every day when she was not at school or going to dance lessons.
For her 17th birthday on November 20 2014, she decided she wanted to throw a party a month later on December 21 2014, and she could not wait to celebrate with friends and family.
She had a large slide in the garden, inflatable balloons, snacks and decorations, but just hours after the party started she noticed a sharp pain in her neck, followed by a tingling sensation in her arms.
She believed it may be a pinched nerve, but as her symptoms persisted her mother took her to the emergency department at her local hospital that evening – and minutes later, she found herself unable to walk.
“The paralysis started at my feet, I couldn’t walk, and then by that night I couldn’t breathe on my own, so I was intubated,” Grace said.
“Then within a couple of days, I got the diagnosis of acute flaccid myelitis… and they described it as a rare polio-like illness, but they weren’t certain what virus caused it.
“It affected the grey matter in my spinal cord, and my doctor said it looked like acid had been poured on my spinal cord, so it was just totally, completely thrashed.”
According to Great Ormond Street Hospital for Children NHS Foundation Trust, AFM is a rare condition that tends to occur in “outbreaks” every few years.
It affects the spinal cord – particularly the grey matter – and over hours to days, muscles weaken and normal limb reflexes disappear.
After five weeks in the paediatric intensive care unit, Grace was flown to another hospital in Colorado for rehabilitation, where she believed they were going to “fix” her – but after weeks of therapy, she said there was no progress.
“No matter how hard I tried, there just wasn’t any difference, so then it started to be more of a transition to, ‘OK, your life is different now, you’re going to go home in a wheelchair, but this isn’t the end for you’,” she said.
Grace knew she still had options, despite being paralysed from the neck down and needing to sleep with a ventilator, but she said seeing her friends go to university left her feeling isolated.
“This was a time in my life where I was supposed to be gaining independence, but at that time, it was all ripped away from me,” Grace said.
“All personal privacy is totally ripped away, I had to rely on people for everything from feeding me to getting me clothed and showering me and everything.
“Both my parents are super incredible, but… seeing my friends go off to college was hard because I wanted to be alongside them.”
Due to her condition, Grace said she had to “reinvent the wheel for (herself)” and come up with new ways to pursue her passion for music.
She first experimented with holding a stick in her mouth, using it to push keys on a keyboard, but with adaptive technology, software programmes and a QuadJoy, which is a mouth-controlled joystick, she has learned how to compose music using her tongue.
“It’s like a mouse that I control with my tongue, and that’s what I use to input notes, note by note, into this computer programme,” she said.
She was later accepted into the University of California, Santa Barbara, where she studied musical composition, and she has seen her music being played by live orchestras.
“It’s pretty special and rewarding to see something that’s bright on a screen be played by real musicians and to see that come together,” she said.
“It feels empowering because, even though I can’t play, I have the ability to write for anything and (anyone).”
Although AFM has given her “a label”, Grace said she does not want this to define her, and she wants to be “inspirational” to others diagnosed with the condition.
Along with becoming “unlikely friends” with others, such as a 75-year-old musician called Earl, she has become extremely close with her personal assistant Brittany, who is her “hands for everything”.
Grace founded the Grace Fisher Foundation (GFF) in 2016, which connects children with disabilities to music, art and dance, and she hosts an annual showcase featuring her music and children from the foundation, which “encapsulates all (her) passions into one event”.
An award-winning documentary about her story was released in 2020, called Amazing Grace, which is available on Amazon Prime, but she does not want to stop there.
She dreams of writing music for a Disney film and wants to encourage others to see the beauty and opportunity in everyday life.
She said: “When your world is crumbling – at least it was for me for a while – it’s hard to imagine things getting better, but I think if you just have an open mind, there are always opportunities for life to change and to get better.
“Having an open mind to see beyond what your current situation is, and if you’re willing to have an open mind, there are so many possibilities.”
