For many years Guilhem Gallart was a successful record producer and recording artist. Better known by the moniker Pone, he helped shaped the sound of hip hop in France in the 90’s and early 00’s and enjoyed a number of hits with his collective the Fonky Family.

In 2015 Pone was diagnosed with amyotrophic lateral sclerosis, better known as ALS or motor neurone disease. There’s no cure for ALS. It’s left Pone tetraplegic, dependent on a machine to breathe, and unable to move anything but his eyes.

And yet … Pone recently released an album of new music, inspired by Kate Bush. He’s working on a series of books. He writes a regular blog, ALS for Dummies, and as he tells me in our conversation he is now more at peace than ever.

Pone’s boundless creativity is painstakingly realised, note by note, letter by letter, using eye tracking software.

The interview you’re about to hear - transcript below - was conducted over a month via email. Pone’s words are spoken by the French actor Guillaume Farré and the sound design for this episode was created by Sébastien at La Plage music.

Pone’s story is a remarkable one. I hope you enjoy it.

POSTSCRIPT

Following the recording of the episode Pone asked me if I had any connections in the UK music industry who might have contact details for the notoriously elusive Kate Bush. He hoped to be able to send her the album he’d made inspired by her music. Fortunately I did. And a few weeks after this interview went live Pone received this heartwarming email from Kate herself …

Dear Guilhem,
     I've only just become aware of your album, 'Kate and Me’.  I listened to it tonight and it blew me away. It’s very difficult to put into words how moved I am by this work and how great my admiration is for you. The challenges you have overcome in order to accomplish this creation are simply astounding. You absolutely have my blessing if you want to release this album in order to raise money for your charity.

Wishing you every success with all your projects.
           With very best wishes.
              Kate Bush 

Also available to listen to on iTunes, Spotify and Soundcloud.

TRANSCRIPT

Can you tell me a little about your early life growing up as a kid? Was it a creative childhood?

As far back as I can remember, I have always enjoyed creating. It started with drawing, colouring, painting. I think there is a form of escape and meditation in every creation - it provides immediate well-being.

What led you to music as a form of self-expression? And when did you start making tunes?

It was my passion for hiphop that led me to make music. I started producing when I was 19 

And what was the first hip hop record which made a big impression on you?

Run DMC, Raising Hell.

Great record. Why do you think you were drawn to hip hop in particular? Because it was the music of the time? Or is there something deeper in the beats and rhymes? 

It was very strong, the first surge of the movement, it was called Smurf. With friends, we broke on boxes, like all the young people in the world.

The vector was the "hip hop" show on TF1 with Sydney. I haven’t seen any other cultural phenomenon of such magnitude. In a flash, the whole planet was in tune with one neighbourhood in New York, the Bronx.

I guess the other remarkable thing about hip hop, in the context of creativity, is that it isn’t just about the music, but about dance and street art and poetry as well …? Did you find yourself absorbed in the lifestyle beyond the music too? 

Completely absorbed, I started tagging at 16.

And by 19 you’re producing records … what was it about producing that suited you?

The day I made my friends listen to my first creations, I felt like a prodigy. Samples of the Velvet Underground and Average White Band … They were amazed, and I have to admit that the pleasure I felt was a bomb, it was going to become a hard drug. I guess it's like an actor who makes his first audience laugh or a chef who tastes his first dish. We become addicted to that, the fact that someone likes what comes out of our head is the first motivation of the creator along with the pleasure of creating. Then come ego, money and that kind of shit.

And did it become harder to maintain your creativity the more successful you became? The more ego and money got involved …?

It is recognition that slows creativity. Complements, good reviews. It makes you lose motivation. I learned to ignore the compliments.

So let's spool forward now … in the period running up to the diagnosis what was happening for you personally and professionally? You had a young family, right? 

Yes I have two little girls. As you can imagine, the diagnosis was a tsunami. I was working as a teacher, I stopped everything.

I have no doubt. It must have been a pretty dark and disorientating time. How did you cope?

It is quite difficult to describe. Faith has been a very important pillar. I think there is a grieving process. I had only one goal, to find peace.

I can only imagine. I've been hugely impressed by the way you've responded to the burden of your illness. From what I understand, reading your blog, you have now found a kind of peace …

I'm more at peace than ever.

And what have you learned which has enabled you to find this peace? To go from the ’tsunami’ of diagnosis to the place you’re in today?

As I told you, I think faith has a lot to do with it - it's like a little light when everything goes out. And having contact with death so often helps to see the glass half full.

You said you were teaching in the period before you got sick. Were you still making music or is that something you’ve only come back to recently?

Yes it was a music school. But when I got sick I spent almost 3 years without making music

Was that because the impulse had gone, or was it because of the physical difficulty as you lost movement?

It was rather that I had something else to think about.

Fair enough! Let's talk about your return to music and this creative period you are now in. I guess the eye tracking software has been vital in enabling you to create …?

Indeed. It is extremely important, above all to communicate.

How easy has it been to use?

It's not that complicated, but it takes patience.

I guess it must have slowed things down … has this had an effect on the music you produce?

I think about music more because of the slowness of the process, and it's not worse. Before I was more into action.

And what was the first tune you wrote with eye tracking that you were happy with?

This one. It was the 7th. 

It must have been great to be being making music again. Not just for you but for your family too, to see you doing one of things you do best. I read that one of your daughters was in particular hypnotised by this track …?

The youngest is used to lying between my legs. I asked her if she wanted to listen to my music. We put the headphones on her and she kept them on for 2 hours, as if hypnotized, she even fell asleep. Since it's her song, I remade a version on the album.

I’ve been really enjoying listening to the album over the time we've been doing the interview. The big question of course is … why Kate Bush? 

To me she is the greatest artist of these last 40 years. If ever she listens to the album, I only hope that she will not be too cross with me for deforming her voice and taking liberties with her works!

Along with the pure pleasure of the creative process another motivation in making the album was ’to prove to people who suffer from great physical difficulties that anything is possible.’ Something you have most certainly achieved. I wonder if you have received any messages from people who’ve been inspired by your work to overcome their own difficulties …?

I get this kind of message every day, it's great to be able to help.

The album has a spacious, meditative quality. I was wondering if your own taste in music, movies, art has evolved in the time that you’ve been ill?

I am more sensitive to talent. I am more sensitive overall. It's related to my pathology. I often shed a tear in front of a live show or a spectacular game of soccer or rugby .

Do you think that sensitivity is also related to having come closer than most to death?

I do not really know. What is certain is that the period after my coma in intensive care remains extremely strong in my memories. By definition, when we are in intensive care, we are between life and death, and I stayed there for 2 months… I had septicaemia, pulmonary embolism, perforation of the stomach, respiratory arrest and cardiac arrest, it's been a lot :)

And do you think the period of creativity you’ve been experiencing since the tracheostomy is connected to that time in ICU, or maybe the change in perspective that being sick has given you? Any idea why you feel particularly creative now?

This period is in me, it is part of me, so it must have influenced the album. But otherwise, I have always been creative. I need to create, it's visceral. I sleep better, I feel useful, I give hope to some, but above all, I have fun

Great. And can you tell me about any of the creative projects you’re working on right now?

I always make music, even with no particular project in mind. But I'm working on an EP with a rapper now. 

And you’re working on a kids book right? Can you tell me any more about it?

By the way, I’m also curious to know a bit more about how the eye tracking works … do you blink to select a letter? How long has it taken you to write the answer to this question?

When I left ICU I no longer had the ability to speak, and I had to bond with my daughters. So I started writing them a story that I read with the machine every night before sleeping. At the end they liked it so much that I looked for an illustrator and voila.

I just fix the letters to validate them. It took me 5 minutes to write this.

And what is the kids book about?

It is the story of a kingdom located on the canopy of an imaginary forest. The two princesses are kidnapped by their lifelong enemies, the terrible Gorax :)  

I hope they make it out alive! So my final question, is this … Some people would have been defeated by your experiences over the last few years. Yet you’ve described ALS as a blessing and said that you wouldn’t have missed this chance for anything.

Why not?

I used to say that I wouldn’t wish it on anyone, but that it is worth living through. It is a human adventure and an extraordinary experience, even if it is very difficult.

I believe that in the end what I’ve learned is that health is not the most important thing, it is love. The love of my wife who saved me. And the love I have for my family and creation.

I think that is a beautiful way to finish our conversation. I’m really grateful for your joining me on this very special episode of the Wind Thieved Hat. Merci bien Guilhem.

Thank you Richard. It was a pleasure.