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Beyond Barriers

Published: Thursday September 11, 2014 MYT 12:00:00 AM
Updated: Saturday September 13, 2014 MYT 12:25:18 PM

A lotus in our midst

Janet Lee's Lotus Pond will be featured in an international exhibition, Hidden Truths, The Mind Unraveled, which will be held in Costa Mesa, California, on Oct 11.

Janet Lee's Lotus Pond will be featured in an international exhibition, Hidden Truths, The Mind Unraveled, which will be held in Costa Mesa, California, on Oct 11.

After years of living with epilepsy and struggling with learning difficulties, a young lady discovers the artist within her. 

I first met Joyce Moi at the Malaysian Society of Epilepsy. It was like meeting an old friend. We had so much in common, so much to share. Joyce is a care-giver to her daughter, Janet Lee, who suffers from intractable epilepsy. Intractable epilepsy is defined as seizures that are difficult to control despite treatment with anti-epileptic drugs.

Joyce was ecstatic when she shared with me her daughter’s achievements in the field of art. One of Janet’s paintings was selected for an exhibition, Hidden Truths, The Mind Unravelled, which will be held in California next month.

The exhibition is presented by Hidden Truths Project in collaboration with the Epilepsy Foundation in the United States. This year’s exhibition drew entries from more than 100 artists from around the world. This annual fundraiser is designed to showcase the artwork of artists living with epilepsy.

Janet’s success is no ordinary feat, given her limitations. She has learning difficulties.

Born in 1989, Janet was an adorable and healthy baby until she had her first seizure at eight months old. Her second seizure occurred when she was one and a half years old. After that, her seizures became more frequent – like every two or three days.

Doctors put her on different types of medication in a bid to control her seizures. Some of the medication gave her side effects like rashes, mood swings and more episodes of seizures.

 
Lee, 25, having a bit of fun with soap bubbles.

When Janet was five, Joyce discovered that she had learning difficulties. When she was in Year One, Janet was still unable to read, write or spell. A child psychologist assessed her as a slow learner.

At the age of nine, Joyce’s mother sought a second opinion from another professional. It was a futile attempt at diagnosis as the psychologist could not get Janet to perform the tasks requested of her.

A despondent Joyce transferred Janet to a special class for students with learning difficulties. From there, Janet learnt to speak Bahasa Malaysia.

As a protective mum, Joyce did not allow Janet to take part in games or sports for fear that she might injure herself should a seizure occur unexpectedly.

Janet’s condition left her vulnerable to bullying. For two years in secondary school, Janet was being bullied by another school girl who had attention deficit hyperactivity disorder. Joyce eventually took Janet out of the school and home-schooled her.

Years passed and things took a turn for the better when a doctor suspected Janet could be having visual problems which hampered progress in her studies. Janet’s eyesight problem was quickly corrected with glasses and she started making progress in her studies. As her communication skills improved, her self-esteem went up.

Colourful Garden, one of
Colourful Garden, one of Lee’s favourite paintings.

Janet became more expressive, and mother and daughter began to enjoy a closer relationship.

Janet has a natural talent for painting and Joyce enrolled her in art class. Janet bloomed as an artist, and over the next few years, she came up with a collection of fine art, contemporary art and calligraphy pieces.

Janet has come a long way since her struggling primary school days. Now, at 25, she is working towards a university degree.

Joyce is happy to share that a new medication prescribed early last year has helped reduce Janet’s seizures to once or twice every one to two months. This is a remarkable improvement compared to the 40 to 60 seizures a year that hit Janet.

Janet’s story helps me to see how fortunate I am. I have been living with epilepsy all my life. I used to think I was all alone in my trials but when I joined the Malaysian Society of Epilepsy more than 10 years ago, I realised this was not the case. At the MSE, I am greeted with smiles and hugs by people from all walks of life.

I have since learnt to count my blessings. My tonic-clonic seizures are far less frequent than Janet’s, and I have been spared cognitive impairment and other motor skill related issues.

What more could I ask for in life? I thank God for His mercies, strength and grace which sustain me. Life with epilepsy is certainly not life without hope.

Beyond Barriers is a platform for sharing and raising awareness on disability issues and any chronic medical condition. We welcome contributions from readers who have a disability or any special needs, caregivers, advocates of disability groups, or anyone living with any chronic medical condition. E-mail your stories to star2@thestar.com.my. Contributions which are published will be paid, so please include your full name, IC number, address and contact number.

Tags / Keywords: serene low, janet lee

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