Laura’s Story… Health, Light and Paint

13 Mar 2020 // Health Stories

Laura’s Story… Health, Light and Paint

Mandorla by Laura Bayliss

I’ve been diagnosed with various neurological, muscular and autoimmune disorders over the years. I didn’t used to talk about my conditions as I didn’t want to be treated differently or defined by them but when asked to write this, as it may inspire others, I thought I should be brave enough to do so.

I remain happy, positive and grateful for what I have in life as opposed to focussing on what I don’t have, but ultimately, it’s been tough.

When I was fifteen, I was a sporty, academic and sociable girl who loved all aspects of school. I had to take a year off school when I became bed/house bound for a whole year. I was in constant pain all over my body, I couldn’t walk, it affected my muscles, nervous system, spine and brain. I didn’t ‘make energy’ properly so I’d sleep for days but never felt rested, some days I couldn’t even lift my head off the pillow, light and sound was too much for me. Simple cognitive tasks were a struggle and the only thing I could do (on a good day) was draw. It was my escapism.

Aged sixteen, Doctors told me I would never be able to hold down a nine to five job but this just made me even more determined to prove them wrong… so I did. I made a slow gradual recovery, I followed my passion and went on to get a First-Class Honours in Fine Art Painting. Instead of working with paint I began to use light as my medium. ‘I painted with light’. In the late 90’s I made site-specific interactive light art installations, using both artificial and natural light.

I left University knowing I wanted to be a Lighting Designer, I didn’t know if such a job even existed in those days, but if it didn’t then I intended to be the first!

I spent the next decade working with light professionally. I continued to call upon my artistic background to inform my architectural lighting, aesthetics were more important to me than number crunching and I ensured my schemes had conceptual integrity.

Even when I considered myself ‘well’ and was working full time, I would often need to sleep all evening/night before returning in the morning. I had a key for the sick room at school, college and work so I could have a nap on my lunch hour or in the life drawing room at Uni. Not when the models were in though! I managed my health struggles in my own time so they did not affect my work. I never wanted to be given any special dispensation or sympathy so I knew everything I achieved was on my own merit.

I won several awards in London, then in Manchester; where I moved to build an amazing team. We became the largest lighting design practice in the North of England. I loved my job and was proud to become BDP’s youngest ever Director in 2008.

I appreciated my life and health more than anything and never took it for granted. I was so happy to be able to walk let alone work, I made the most of every minute both professionally and personally. I was well enough to play sport again and I remember saying to my Mum on the way home from netball that I finally felt like a ‘normal healthy person’. I know I’ve never considered myself ‘normal’ on any other level but perhaps in this context I’d spoken too soon…

In 2009, I was forced to give up a career that I loved due to my conditions returning, it was gutting. Once again, I lost my independence, I was in constant pain, reliant upon a wheelchair and carers.

My wonderful husband proposed to me (at my worst) saying “even if you never get better I want to marry you anyway”.

At this point I struggled to lift my arms to hold a brush, so physically it was too hard for me to paint. My health and pain improved massively during both of my pregnancies, so I was able to start creating again. My work was exhibited alongside other international Light Artists in Paris for Lumières – Play of the Brilliants in 2015 and I was recognised as one of Lighting’s 40under Forty in 2017 despite being ‘out of the game’ for eight years.

I relapsed again in 2017. I have been in constant pain in every part of my body and reliant on my wheelchair ever since but I will continue to keep creating in whatever way I can. My mind’s determination and desire to create remains no matter how much my body tries to tell me I can’t. I may not be able to do as much as I’d like in the way I would like but I will always find a way.

I continue to use my professional experience as a Lighting Director to inform my work as a Light Artist. My art combines my passion for paint with my love of light as I use these two mediums in conjunction.

Laura Bayliss

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