Julie Coakley 

I couldn’t say the word ‘blind’

In the final year of her art degree, Julie Coakley lost her sight. It was the worst fate that could befall an artist
  
  

Julie
Julie Coakley continued with her art degree, despite going blind after contracting meningitis Photograph: Guardian

Last January I was working from home on my art dissertation, and battling a terrible bout of flu, when I noticed a vivid rash across my arms. Later that afternoon, I sat across the table from my GP, who told me I probably had an allergy to cold medication and sent me home to bed. I have no memory of getting home, but when my husband David came back an hour later, he saw me asleep in bed and popped out for a while. He returned to find me in a coma.

At that point, I was three-and-a-half years into a degree in three-dimensional design at the University College for the Creative Arts in Farnham. I had always had a passion for art. Even as a child I loved patterns and colours. I grew up in Tanzania, and we had to make everything - all our clothes and toys. I remember being fascinated by different textures and by the landscapes around me. I have vivid memories of safaris through the Serengeti - the long grass, the fluffy brown velvet of the bulrushes, stopping to buy sugar cane and biltong from the Masai.

At 18 I moved to Britain to take a two-year art foundation course. I had planned to do an art degree, but, instead, I met David, and we had two sons, Patrick, now 19, and Christopher, 17. I never stopped making things - I did silversmithing and ceramics, made plaster reliefs and ran a successful sculpted-card business - but studying art again later in life was immensely fulfilling. I could finally complete the journey I had started all those years ago. And then, just when I was on my way to achieving my dream, I collapsed.

At hospital, I was diagnosed with meningococcal meningitis and was in a coma in intensive care for 12 days. During the time that I was unconscious, my mind was aware of strange and bizarre characters, whom I could feel moving me. I would hear bits of conver-sations or people talking to me and think to myself, "Move! Just move! Move your arm!"

As I started to wake up, I entered a period of limbo. I thought I might be dead; that I was floating suspended somewhere. I couldn't move my legs and there was a buzzing noise in my head like a giant fridge motor. Loud noises would be accompanied by a nanosecond flash of white light behind my eyes. It was terrifying. I thought I saw my husband's face nose-to-nose with me, and he was shouting: "You're in hospital! You've been really ill." I know now that I couldn't have seen his face.

The doctors found out I was blind when I came off the life-support machine. A few days later they discovered I had lost the hearing in my right ear and all but 40% in my left ear. Around that time, I thought I saw sparkling green and blue lights in a vaulted ceiling, and said to my father, "Have they got coloured lights?" He described the plain white NHS ceiling and I realised I couldn't see it. All I could see was a dark-grey matt void.

For an artist to lose their sight is horrifying - I felt like a fading watercolour, as if a little bit of me was blowing away every day. I would rather have lost my limbs and lived my life in a wheelchair. At times, my body would rack with heaving sobs, but even that was painful because my eyes wouldn't produce tears. For weeks I couldn't even say the word "blind". I'd just say, "I can't see." I kept trying to look at objects I knew were there. I would hold a cup and stare at it, but see only darkness.

Five weeks after being admitted to hospital, I went home. I was still very wobbly, I had nerve damage in my hands and couldn't sit up straight or walk more than a few steps. But it never occurred to me that I couldn't carry on with my degree - it was just a question of how. Two days after going home, I went to the university for a meeting, and I started back the following week.

For my final degree piece I decided to tell the story of going blind. I created three large glass panels called A Blind Trilogy, incorporating Braille. It was a far more painstaking process than any artwork I had done in the past. I cut all the 1 cm sq glass pieces - more than 30,000 - and put them into pots that I had lined up alphabetically, so I knew where the colours were. I had to feel how the piece was looking by running my fingers over it. My son Patrick helped with cutting the glass, loading kilns and driving me to and from university.

The panels were finally finished on the morning of July 2 - the day of the New Designers exhibition in London, where our year was exhibiting their work. At the show, I was surrounded by the work of 4,000 up-and-coming contemporary designers, but I couldn't see any of it. Only one woman let me touch her work - big, moulded glass lips in different shapes. Very few people are open-minded enough to let you do this.

Even though I will never be able to see the panels, I have a mental image of how they are and I can feel the sheer dimension of them. When my mother saw them, she broke down in tears. The response I have had from strangers and people I hold in high regard has made it all worthwhile. I always wanted my work to speak to people and I know that it has. When I found out I had got a first in my degree, I was so proud that I cried.

My art has functioned as a crucial distraction from my situation. I am trying to set up a studio at home, but some of the gadgets I need - such as an electronic colour reader - are incredibly expensive. When you go blind, you don't get much for free - all I got was a white stick. But since I lost my sight, I have found that I value colour much more and can be really brave with it. I'll put colours together in my head and think, "Wow!" Sometimes, if I really close my eyes, I can see an image. My favourite is a bright blue beach with gentle rolling waves and a palm tree. It's never crystal clear, but swirling and hazy.

For a long time, I just didn't feel like me anymore. I couldn't see what I was wearing, I wasn't racing around in my car. We live in an incredibly visual society - the internet, films, books, art - and I've had to leave all of these behind. I can't get used to it. When I listen to my talking watch, I always look at it, even though I don't need to now. I have even lost four stone, because I can't see food on my plate, so have little interest in it. Eating is like a fishing trip - you think "Where the hell's the plate", and I can't save the best bit for last because I can't see it.

There are places I had planned to travel to for inspiration - the leather-dying vats in Marrakech where they have hundreds of bright squares of colour laid out to dry in the open air like giant patchwork quilts - which I will never see now. Yet I count myself lucky because I travelled extensively before I went blind and saw such amazing things. I have an incredible photographic bank of memory images I can use for inspiration. I dig them out of my brain as if from a filing system and work really hard to keep bringing the images up, or I risk them fading. The faces of my children are crucial images, and now I will always remember them as being young. I want my boys to travel to strange countries, eat bizarre food, look at fantastic places and fall in love a lot. But it makes me sad to think that if they have children I'll never see what they look like.

I console myself with the thought that the brain is constantly adapting and readapting. I wonder if the nerve endings that have been damaged might regenerate. As it is, I'm starting to get a very slight, almost imperceptible, sense of movement in my left eye - a black line moving across my field of vision when I wave my hand in front of my face - so maybe one strand of my optic nerve is getting some blood supply.

In the meantime, I'm channelling my disappointment and my energy into creating art and pioneering new ways of doing things. I've developed a single-minded vision and much more determination, perhaps because there is so much less trivia in my mind. I can't flick through a magazine or watch rubbish on TV, so I focus purely on the things I choose to do, or that need to be done. I've felt much more mellow since I went blind. Things that used to stress me out before are now totally irrelevant. So what if you get an overdraft charge, or you can't find a parking space? Park somewhere else. Walk.

· Julie Coakley was talking to Hannah Borno. Her artwork can be seen at juliecoakley.com

· Do you have a story to tell about your life? Email it (without attachments, please) to my.story@theguardian.com If possible, include a phone number

 

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