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When doctors told Mandi Kingsbury, 36, she had MS her response was "what can you do about it?" Later that day she and a friend looked up the condition in a medical book. "My friend said, 'it doesn't sound like you are going to die from it so it can't be too bad', and I just approached it like that," Kingsbury says. A degenerative disease of the central nervous system, MS is caused by damage to the nerves and the brain's consequent inability to process the information we all take for granted. There is no known cure. A fashion designer and stylist, and former World of WearableArts supreme award winner, Kingsbury won the American Express Open Section and was runner-up to the Montana Supreme Award at WOW last month. Her entry comprised metal body parts inspired by those used to hold the body inflexible, representing the physical restraints caused by MS. Aluminium javelins were used to further restrict movement and symbolise the damaged myelin sheath and nerve shafts running through the brain. "It's a bit abstract and a little strange but for me it made a lot of sense," she says. "This is how it feels to have MS. It can be very painful and there are a lot of brave people in New Zealand suffering from it." Kingsbury hopes the piece will create awareness and inspire individuals living with the disease. Having her entry accepted was also an important "validation" for Kingsbury who says she doesn't want people to think she has not achieved because she has a disease. "For me it is not an excuse. I want to do what I want to do. I wanted to win the supreme again, that was my objective," she says. Kingsbury has always been a high achiever. She trained in textile design at Wellington Design School. In 1995 she was head-hunted by couture house Arushi, for which she worked for in Dubai for two years designing clothing for the royal families of the United Arab Emirates, Saudi Arabia, Kuwait, Qatar, Oman and Malaysia. When her contract expired Kingsbury decided to go freelance and secured the contract to design avant- garde Egyptian uniforms for the Pyramids Club in Dubai. Her passion, however, lay with designing wild accessories to compliment couture gowns. In 2001 she was runner- up of the Asian Facet Award for a neckpiece fashioned out of paua, gemstones and rhodium-plated silver, which also featured in Taiwan Vogue, and racked up numerous contracts with Swarovski. Working with local couturiers, she became involved with conceptualising ideas for photo shoots and following it through to the studio, which led to fashion styling. She often has the opportunity to use her own accessories when shooting magazine editorials, though at the time she doesn't admit they are hers. Her latest design is a metal flower that can be worn as a bracelet, which features in Indian Vogue's debut issue. Her goal is to sell the flowers through designer stores, with part proceeds going to MS research. Up till now Kingsbury has kept quiet about her MS, saying it takes about three years to settle in your own skin and learn to accept it. "There is almost this guilt. You don't want to inflict it on another person because it is hard for them to respond. When I told people I had MS I would see the shock on their faces and it stopped me from saying things. I don't want to be seen as anything less." However, she has learned it is good to have people to help you through it. She was recently approached by a model in Dubai whom she'd worked with on numerous occasions. "She walked up to me and said 'Mandi, you have MS', and I said 'yes, I do' and she said 'so do I'. It was amazing because I've been in the most incredible situations with her, doing shoots at 2am freezing on the beach and she was being stoic and I was being stoic because neither of us knew we each had MS and we could have supported each other. I hope with my being open about MS will give other people the courage to come out and be confident. " Before her diagnosis Kingsbury says she put her exhaustion, headaches and double vision down to stress. She calls MS a "you look so good disease" because at her stage there are no visual markers as to how bad it is. She has learned that working too hard and not getting enough sleep will send her a little crooked. "I have my moments – a bit of paralysis in the arm, numb legs and fatigue is a bugger. You get up in the morning and feel like you have climbed a hill. When that happens I go submarine and take a couple of days off," she says. "Cognitive problems really annoy me but luckily I work in fashion. If I don't recognise someone or can't remember their name I just call them darling and if I'm stuck in the heat and get grumpy it's okay because all fashionistas do. " Kingsbury has no intention of slowing down or halting her career. She splits her time between Dubai and Christchurch spending six months in each. "You can't predict what is going to happen with my disease and I'd hate it to take away anything from my life. I don't want to be in the progressive stage and say 'I wish I had done that'. I don't want to sound cavalier because MS is a very serious disease. All people handle it in a different way, but this is what's right for me." * For information about MS visit www.msnz.org.nz | ||||
