In the last week of August 2014, a Californian musician uploaded a six-minute long video to Youtube, showing himself taking part in the Ice Bucket Challenge – not so unusual in itself, with 2.4million-and-counting of these charitable enterprises online around that time. However, this Ice Bucket Challenge was different: firstly, the man had bags of ice balanced on his head and in his crotch rather than being poured over him; secondly, rather than passing the challenge on to his friends and family, he called out (‘while my jewels freeze’) three of his high profile colleagues – Eddie Van Halen, David Lee Roth and John Meyer; and finally, he communicated each word of his speech in blinks, painstakingly spelling out one letter at a time via an interpreter, while he sat motionless in a wheelchair.

Once touted as potentially the best metal guitarist on earth, 45-year-old Jason Becker has spent the best part of the last 18 years completely paralysed, since being diagnosed with ALS when he was on the verge of rock megastardom. But in that time he has not only defied medical wisdom by staying healthy and alive, he has also continued to compose and create his own astonishing music, been the subject of an award-winning documentary and helped to invent a communication system which has revolutionised the lives of other patients like him worldwide.

Despite being confined to a chair and unable to physicall perform, his public existence largely limited to a Twitter profile and sporadic musical releases, his influence continues: in 2012, Guitar Player magazine named him as ‘the greatest shredder ever’; in 2014, Seymour Duncan released his signature model pickup with Carvin following up with a signature line of guitars in 2015. And both fundraising gigs and a documentary about Becker’s life have taken place under a title you could only hope to find in the blackly comic world of heavy metal: Jason Becker: Not Dead Yet.

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Since 1995, Jason Becker has released four albums. Not exactly a punishing workrate for a regular artist, but Becker’s life, composing and recording techniques are very far from normal. Since ALS paralysed his body, he has continued to create music, moving away from the pyrotechnic, lightning-fast metal of his youth to more textured, complicated pieces, often instrumental, sometimes with layered, treated voices giving the work an ethereal, hypnotic feel.

Soon after Becker’s paralysis, his friend Mike Bemesderfer devised a software programme connected to a visor-mounted sensor. Becker could click a virtual keyboard by moving his chin, altering the velocity of each note and gradually, painstakingly assembling them into entire pieces of music. His album Perspective was the result of this exhausting process, with his epic ten-minute composition, End of The Beginning going on to be performed by the Oakland Symphony Orchestra and the Diablo Ballet in 1999. On its release, Eddie Van Halen appeared on video with the immobilised Becker to describe him as having been ‘just one of the best rock and roll guitarists on the planet.’ The understandable sense among viewers was that in Becker they were watching a man who was living on borrowed time.

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Jason Becker was born in 1969, the second son of Pat and Gary Becker. A month premature, allergic to milk, prone to rashes and steadfastly refusing to speak to his schoolteachers, his mother described him as a ‘kinda high maintenance’ child. But despite this, the Beckers were an uncommonly close-knit family. Gary – a painter – originally attempted to teach his five-year old son the guitar. ‘He was bored and never came back for lesson two,’ recalled the father in Jesse Vile’s 2012 documentary, Not Dead Yet.

What followed was the kind of lightning-flash of creative growth that arts teachers dream of encountering in their students. Becker barely removed his guitar, and by sixth grade was performing Bob Dylan songs at school shows. He then learned note-perfect renditions of Eric Clapton’s total output, played a Bach fugue for local promoter Jim Oceam at 14 (‘I just realised I was in a room with a genius’) and was soon enough of a showman to have mastered playing the guitar with one hand while executing yo-yo tricks with the other. Home video footage from the time shows a young man still growing into his skinny frame, wispy moustache and frizzy hair, but physically controlling his instrument in the manner of someone with decades more experience and a nascent grasp of stagecraft and showmanship.

In 1986, Shrapnel Records’ boss Mike Varney picked up on a demo tape that Becker had sent him and paired the 16-year-old with Marty Friedman (later of Megadeth) in Cacophony, a kind of speed-guitar supergroup. The pair were at the forefront of the ‘shred’ guitar scene which had seen a new wave of guitarists like Steve Vai, Yngwie Malmsteen and Joe Satriani develop an ultra-fast, supremely technical style of guitar playing which drew as heavily on classical music as on traditional rock. Becker was from this tradition, but had much greater ambitions and prospects as veteran music writer Alan di Perna – who interviewed Becker several times for Guitar World magazine around this period – remembers. ‘He came out of the “shred ghetto”, and a lot of those players just remained in that world. They can produce these virtuosic flurries of notes, but they can’t really cross over into mainstream rock – but Jason nailed it. He was so clearly destined for more than just doing clinics in guitar shops.’

In 1989, still aged just 19, Becker was recruited by former Van Halen frontman David Lee Roth. This was as prestigious a position as existed in rock music – Roth was a huge, cartoonish, over-the-top rock star, who could score hit pop singles while still maintaining credibility in the world of heavy metal. With his supersized, hyper-capitalist, self-aggrandising videos, Roth functioned as a Jeff Koons figure, someone who had lived an exaggerated ideal of the artist’s life for so long that it had eaten away whatever original personality had existed. But more importantly, both his previous sidekicks (Eddie Van Halen and Steve Vai) had been boundary-smashing guitarists who had completely changed the way the instrument was played, both technically and creatively; Becker was picking up their mantle.

What he hadn’t mentioned to his new bandmates was a nagging muscular pain in his calf. As recording started on Roth’s album, A Little Ain’t Enough, Becker was quietly visiting Keiser Medical Centre for a battery of tests, after which he was diagnosed with Amyotrophic Lateral Sclerosis – known in America as Lou Gehrig’s Disease and the most common form of Motor Neurone Disease – and given just three to five years to live by doctors. ‘It’s a disease that damages the nerve cells that connect the old grey matter to the muscles in the various parts of the body,’ explains Doctor Brian Dickey, Director of Research Development at the Motor Neurone Disease Association. ‘The person can think about making that movement, but the wires that connect the brain to the muscles in the body are dying so there’s no way that the signals can get through.’ It’s hard to conceive of a crueller illness to be visited upon a young man who had been gifted Becker’s abilities.

By the time recording successfully finished, Becker was using the lightest guitar strings possible due to his weakened hands. He was forced to admit his condition to his bandmates, pull out of the worldwide stadium tour to promote the record, and move back home with his parents to Richmond, California. As Gary Becker bluntly states of the diagnosis: ‘It just stabbed me in the heart.’

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Becker’s decline was terrifyingly fast. The young man frantically tried alternative therapies and experimental drug treatments (at one point even having his mercury fillings removed), while becoming dependent on sticks, then confined to a wheelchair, his hair thinning, his voice failing and his muscles wasting away. By 1992 he could barely speak; by 1997, he was completely paralysed.

‘It was a very tight family. They were all very supportive, and all very creative people’ says filmmaker Jesse Vile. ‘When this terrible thing happened, they didn’t even think about sticking him in a home somewhere and saying goodbye. They were fully prepared to do whatever they could to keep the family together.’

This meant turning the Becker home into a 24-hour-a-day care center where the guitarist’s family, alongside other friends, girlfriends and helpers, tended to him. While some of this was physical (and Becker’s current good health is a testament to the quality of this care), it was equally an effort to keep him together mentally and spiritually. And for Becker, more than anything, this meant carrying on composing and creating. ‘He had music in his head and I think that’s how he kept going,’ says Gary. The question was how that music would be transported from Becker’s internal world, to that outside.

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‘It was 1996, Jason did not yet have a tracheostomy, and he always resisted new things, because he thought that would weaken him. But I could not understand him – it was very difficult, he was having a hard time projecting his words.’ Gary Becker is talking to me by phone from the family home in California. We’re on speakerphone and our conversation is soundtracked by the constant mechanised hiss of Jason’s breathing apparatus. The father is explaining to me how he came up with a radical communication tool that is now used worldwide by patients who are unable to speak.

‘I had seen alphabet boards, but they seemed really cumbersome. I just wanted something similar that we could really work with.’ The end result is a lo-tech device that anyone anywhere could replicate, in which the patient’s eyes motion to different parts of the board, while their ‘vocalist’ picks up the letters and anticipates the developing word, in the manner of predictive texting. Essentially the carer becomes the ‘voice’ of the patient. ‘When I first made it, Jason didn’t care so much,’ he laughs in the customary manner of all parents who’ve had to force their errant offspring into doing something that they know is good for them. ‘But when he started working with it, it was very effective.’

Admirably, the Beckers refused to commercially exploit the invention. ‘At the beginning I had people telling me to get a patent and then sell it, and… as soon as lawyers got involved it became so complicated. I didn’t even understand the system myself, so I just said “I’m giving it away.” We’ve heard back from many people where really it saved and improved their lives. It’s available for free to anyone who wants it.’

Despite their hugely abnormal circumstances, the Beckers come across as a resolutely normal family. ‘Actually, that’s the funny thing,’ says Gary. ‘I don’t think we <did> change as a family. We all loved each other and had fun and did art and played and appreciated life. And when ALS happened we just used what we were to make the best of it. It’s just how we do it. Mostly, we’ve just learned that life is precious and it can just be gone in a second. So we try not to concern ourselves with minor complaints and stuff. Not that we’re perfect – we still have family arguments and stuff. But ultimately we understand that life is a pretty precious and brief gift. We try to have gratitude for it.’

Later that evening, I speak to Jason himself, albeit with Gary ventriloquising for us. As an interviewer, it’s a unique experience – the guitarist’s character and intellect are completely undimmed, but you have to let them come into focus as each sentence develops through the exhausting process.

I ask Jason about the sensation of watching Vile’s documentary and seeing his life played out on film, from the earliest home videos of himself as a toddler, through his heavy metal heyday to his current state. ‘It was great!’ he spells out. ‘I felt like it was about time, damnit!’ We talk about his coping strategies for dealing with his enforced inactivity. ‘I meditate every day, so I’m still involved with that. Off and on all through the morning, every morning – that’s my routine. But I usually take the moment one day at a time.’ As for whether it’s his mental strength which has kept him going for so much longer than predicted, he’s pragmatic; ‘I definitely think it’s both (mental and physical). I wouldn’t be able to live without the physical care, even if my mind was fine, and vice versa. I’m OK at the moment. ’

As we wrap up our conversation, I mention relistening to the album he recorded with David Lee Roth, A Little Ain’t Enough at high volume. ‘Good,’ he replies. ‘Because if you play it quietly – it <sucks>.’