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Vision-impaired teenager senses optimism despite disorder after experiencing French cosmetic firm`s class in fragrances

3.0 from 2 votes
Sunday, June 01, 2008

For the shy teenager with long, wavy, brown hair, every day is a reminder of the limitations she faces as a visually impaired person. Emma, 14, has Stargardt`s disease, which affects her central vision. At school, she can`t see what her teachers write on the white board, and sometimes it`s difficult for her to pick faces out of crowds when people greet her.

But for a few days this summer, she was reminded of the abilities she does have. Emma, who will be a high school freshman this fall, was one of five blind or visually impaired teenagers invited to a perfume school in Provence, France, designed for young people like her. In a four-day course, they were taught the secrets of perfume-making, a process that is less about seeing than smelling, feeling and imagining.

Olivier Baussan, founder of the French cosmetic company L`Occitane, started the school in 1998 after seeing a blind woman smelling perfume. It struck him that people, particularly young people, should not be limited by the abilities they lack and instead should be able to capitalize on the skills they possess.

Kelly Parisi, who as vice president of communications at the American Foundation for the Blind helped coordinate the trip, said that blind people don`t have superior olfactory skills, but because they lack one sense, their others may be more finely tuned.

People with Stargardt`s disease, a form of macular degeneration that most often affects young people, have difficulty processing Vitamin A. The hereditary disease is relatively rare because both parents must carry the genetic trait to pass it on. About 30,000 people in the United States have Stargardt`s disease.

Emma, who was diagnosed at 11, has peripheral vision but cannot see images directly in front of her. Most experts say it is unlikely that she will completely lose her eyesight, but she will require special accommodations.

The disease hasn`t prevented Emma from playing basketball and taking up the unicycle -- or being a world traveler.

In Provence, the teenagers were taught how to extract oils from flowers, and they heard from a master perfumer -- or "nose," as they are known in the business. Kate Green, vice president of marketing for fine fragrance for Givaudan, a Swiss fragrance company, said there are about 350 such noses in the world. Most have been handpicked for their olfactory abilities and train for years at exclusive schools, she said.

In crafting their scents, the teenagers were encouraged to draw from their memories as master noses do, Emma said. The goal, they were told, was to take moments from their lives and express them through scent.

The memory that inspired Emma`s geranium, lavender and vanilla creation was one that was both hopeful and sad.

Just a few months before Emma turned 13, her mother, Marie Liu, was found to have breast cancer.

"I realized there wasn`t a whole lot that I could do -- I wasn`t a doctor or anything -- but I wanted to do something," Emma said.

She remembered a story she`d once heard about Sadako, a Japanese girl who was a victim of the atomic bomb dropped on Hiroshima. As she lay in the hospital, Sadako vowed to fold 1,000 cranes as a symbol of hope that she would get better. Emma decided to do the same to give her mother hope as she went through her treatments. Emma, her grandmother, younger brother, father and mother set to work.

It was not an easy task. Sometimes the paper ripped or the cranes came out slightly lopsided. But after a few months, they`d reached their goal. Emma folded the final crane just before Marie had her last chemotherapy session.

The cranes are displayed in the living room of the family`s suburban Bethesda, Md., house.

"Whenever I have a bad day, I`m able to think about the cranes," Marie Liu said. "I can`t allow myself to have too much of a pity party because it`s such a gesture of hope."

In the classroom in Provence, Emma says, she had many thoughts as she inhaled the fragrant scents. Some of the oils had special properties -- they were said to relieve joint aches or have other healing abilities -- and others simply smelled good.

Her instructors told her that there are more than 1,500 essential oils in the world. There were so many choices. But then, she said, her mother`s face popped into her mind, and she knew what she wanted to do. Hers would be a healing soap she could share with her mother, much like the cranes. She chose geranium, lavender and tea tree oil. with a bit of honeysuckle and vanilla.

Emma`s French adventure will be chronicled in an upcoming issue of Teen Vogue. The magazine`s editors did her hair and makeup and brought outfits for her to model in picturesque lavender fields.

But the best part was being with other visually impaired teenagers who face similar daily challenges, Emma said. She and the others giggled over their mishaps and commiserated about their frustrations.

These girls understand me, Emma thought. She felt far less alone.

When Emma returned home, she put the bottle of soap on a shelf in her bathroom.

"It`s kind of for special occasions," she said. "It`s a memory of my trip."

And a reminder, she said, of hope, healing and opportunity.

"After all these bad things, (Provence) felt like turning the corner," said Marie Liu, who accompanied her daughter on the trip. "One day, Emma woke up and said, `I`m the luckiest girl alive.` And we realized there are good things that come out of the bad."

© 2007 The E.W. Scripps Company


Author: By Lori Aratani
3.0 from 2 votes
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