A world of wonder

Later I went to a consultant and he told me that I was going blind. I did genuinely feel like my world had crashed down around me. I was 25 at the time. I remember walking out of the hospital. It was a really grey horrible day and I remember thinking, ‘Wow, what the hell is going on here?’.

A turning point

The thing I was most afraid of was that it would stop me following my dream of a career in music. At first, it spun me into a period of depression. Seeing Stevie Wonder perform at Glastonbury was a big milestone on the journey. I remember standing on the brow of a hill with a group of friends with the sun setting and crying very positive tears watching him perform. It wasn’t a conscious thing – I don’t remember standing there thinking ‘oh my God, if he can do it, I can do it’ – but something definitely happened that night that changed me for the better.

It is very hard to describe my vision. Because your eyes don’t acclimatise easily to different light environments, it’s like you’re looking through a mottled spotty lens all the time. Your brain tries to fill in the gaps but that means you can hallucinate quite a bit. I see things that aren’t there and, because of the blind spots, I don’t see things that are there. 

"Seeing Stevie Wonder perform at Glastonbury was a big milestone on the journey. I remember standing on the brow of a hill with a group of friends with the sun setting and crying very positive tears watching him perform"

Passion for music

DJing relies more on your ears than your eyes, but technology is always changing and that can bring challenges. There was the digital boom and now it has come back full circle and everyone is using vinyl again. Vinyl is tricky because I can’t really read the text on it. I have a system where I label everything myself. I have to methodically read from the top left corner to the bottom right corner of the letter before I know what it says.  

Music has been my everything since the get go. I have been very fortunate to be able to do it as a career because not a lot of people can say that they live and work doing their true passion in life. The big appeal of DJing for me is that you are giving people that release on a weekend. I think back to when I had those moments in a club, where I had endured a tough week and my spirit was lifted on the dance floor. It’s quite a special thing to be able to give to people. It’s cathartic for me. 

A helping hand

Gigging around the world, I was really reluctant to have a tour manager for a very long time. I think when you have your independence robbed you’re very, very keen to hold on to whatever independence you have. I really didn’t want someone to come with me and be doing everything, I wanted to do it myself. I am now at the point where I can’t really travel without someone. I have Gavin, my partner coming with me to all my gigs now. He acts as my tour manager organising transport, providing technical support on the night and helping me get from A to B. I’m 32 weeks pregnant so he carries my bags too.  

My partner and I have been together 10 years in January and he has been my rock through it all. Mentally when I’ve had a tumble he has been there to support me. He helps me know what’s going on in television programmes and reads the menu to me at restaurants – they sound like smalls things but cumulatively they affect your life a lot. I don’t think I would have been able to do it without him.

Looking forward

This journey has had its downfalls but it has had its positive outcomes as well. It has made me a better person and a stronger person. I feel grateful for the opportunities that I have had – to be able to travel the world and see the world while I can. I have a baby on the way, we have that to look forward to, a little girl. There is change ahead, but I am always excited about tomorrow.

Find out more about Stargardt macular dystrophy here.