Thursday, 2 April 2009

She's Not Sick, Just A Bit Unwell

When approached to do this, I honestly didn't know how much difference it would make. This piece was hard to write at first, but looking back, I could say I'm rather pleased with it.

This piece accompanied an ad for the second print of the book by MPH Publishing. The books, T-shirts and whatever she's selling for her medical fund is perhaps the only thing keeping her going. I, and many others, hope that she'll be able to graduate and support herself as a psychologist or something similar before charity fatigue sets in among the supportive public.

Gutsy gal
A young lady’s quest for normalcy leaves KW Wong awed - and humbled

original text; edited version published in MPH Quill, Apr-Jun 2009

You wake up one morning, put both feet on the ground, and suddenly, the ground starts to tip over. You try to stand upright. You can walk, but your feet grow ever more unsteady as your stride quickens. Don’t even think about running or even jogging. Nothing changes after a couple of days. After three doctors and two sinsehs, a specialist informs you that you have a rare, incurable condition that adversely affects your body, including your sense of balance. You panic, because you’re one of your school’s star athletes. And there’s a ballet recital next week.

Yvonne Foong and her book in page 19 of
MPH Quill for Apr-Jun 2009
Yvonne Foong Ming Niang might not be her school’s medal-winning track star, but she did ballet and figure skating. Then her life changed when she was 13. She started going deaf in one ear, and got sick doing spins while dancing or skating. She didn’t know why until she was diagnosed with Neurofibromatosis (NF) Type 2, a genetic condition with no known cure that causes tumours to grow on her spine and brain. The latest tumour now endangers her eyesight; she already has trouble reading small-sized fonts. She has started learning Braille just in case, but - putting it mildly - going blind may be the least of her worries.

Currently, the only solution is surgery, especially for removing tumours that grow near the critical nerves. Unfortunately, few surgeons in the country can do that without complicating her condition. She knows, because she’s had two surgeries at KL’s General Hospital and another three were at the US House Clinic in Los Angeles. While seeking treatments in the US she goes to doctors in Malaysia for periodic check-ups, such as MRIs and eye tests. So yes, she did take notes. Until Malaysian medical facilities get better, she’ll have to go elsewhere for surgery.

However, Yvonne does not want to depend solely on donations - nor does she want to burden her family. Besides selling her “Heart4Hope” T-shirts and writing for publications such as the (discontinued) YellowPost and The Malay Mail, she has published a book that calls to mind a Matchbox 20 song. I’m Not Sick, Just A Bit Unwell was written to raise two things: cash for her medical fund, and awareness for neurofibromatosis among the Malaysian public. A reprint of the book will be released by MPH to raise funds to save her sight.

Yvonne’s is an uphill battle. Her constant need for medical attention means she will be working to pay her doctors’ bills for the rest of her life. The Malaysian public has so far, risen to the occasion in her time of need. But how long can that go on? She once admitted that without the public’s generosity, sales of her book would have been very sick indeed.

Some may doubt that Yvonne needs help because she doesn’t “look needy” in her public appearances. Despite her condition, she won’t play the part. She’s determined to lead a normal life, which includes graduating from college, nice clothes and great dinners for special occasions, parties, and the occasional Starbucks latte with friends - something many of us take for granted.

At first glance it is hard to tell that Yvonne has problems. I think our first meeting was at KLCC’s Burger King on July 31, 2006. I remember her hair’s red highlights and the midriff-baring bright green top. It was at a bloggers’ meet, and the crowd made me feel ancient. But it wasn’t until the launch of I’m Not Sick on December 2006 that I finally got a copy - autographed, of course.

The first edition of I’m Not Sick is a slim little book that briefly tells the story of her life and how she dealt with her condition. Chapters that describe NF, and patient testimonials come later, as well as the story of how she got published, and the day she was voted the “Most Outstanding Youth of the Year” at the inaugural Asian Youth Ambassadors (AYA) Dream Malaysia Awards 2005.

According to Yvonne, the first draft was a bit more “raw and emotional”, until the editor John Ling got to work with it. It explains why some passages felt so... detached, clinical. Nevertheless the emotions conveyed were still discernable, and it was hard for me not to sympathise with her and fellow NF patients when I reached the last page.

May I add that she’s deaf, has one blind eye, a poor sense of balance and several other physical impairments? If I were in her shoes I’d take about two hours to get out of bed every morning - wallowing in misery - instead planning my next book or fundraiser.

A lot has changed with Yvonne since the book came out. More surgeries, of course, and with an auditory brainstem implant installed she’s now a bionic woman. But it will be years before the device can help her discern certain sounds. And by the time you see this, she would have undergone the operation to save her sight. After that, who knows?

I was told that writing this piece was better than buying a hundred T-shirts. I did it anyway despite a busy new job, because I want to help. I want Yvonne around for as long as possible, like all her friends do. Most importantly I want to hear what she has to say next, because I feel there’s a certain wisdom in her words. I hope she’ll come up with another book. Maybe this time, there’ll be a chapter on a cure for her condition - my idea of a happy ending.


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