Last week at 'Readings' (a local get-together of people interested in the Arts), I got a chance to meet a person I have been wanting to for years. I first heard about Yvonne when she started her campaign to raise money to undergo surgery in the US. I have been following her progress via her website and her story has been an inspiration. Each time I listen to and read about her story, I feel humbled and my problems certainly pale in comparison. I am deeply honoured to have been given this chance to interview her and I hope that you will enjoy reading what she has to say. If you feel so inclined to give her assistance, please do so (see below for details), please do so. I am sure she will benefit from any assistance you give. Without further ado, I have great pleasure in introducing you to Yvonne Foong ...

Aneeta: Yvonne, thank you for agreeing to this interview.

Yvonne: You are welcome, Aneeta. I'm glad to have met you, finally.

Aneeta: Yvonne, before we explore the medical aspects of your story, I will ask you to share a little of your story first. For instance, where were you born, where did you grow up, what do you do for a living now and any information you wish to share.

Yvonne: I was born in Petaling Jaya and raised in Subang Jaya. That says I'm well-integrated in the middle class community since a very young age. As a child, I did classical ballet, figure skating, and karate. I played squash and bowling leisurely. I also learned the piano and joined the school choir.

I wrote a column for The YellowPost over one and a half years until it stopped publishing. Then I wrote a column for The Malay Mail over a month. I tried my hands on feature writing and contributed occasionally to other publications.

I find writing in Malaysia constricting and not as effective for advocacy as I'd hoped, so I am looking into other avenues, such as the possibility of hosting my own talkshow since I like to talk about things I believe in. Just trying to do what I can by looking at my own personality traits. That's quite a stretch, but you never know! As they say in Malay, hidup menjadi-jadi.

Right now, I'm studying for a Bachelor of Science in Psychology. I'm focusing more on studies, fundraising, and creating more awareness for Neurofibromatosis.

Aneeta: Now, let’s explore your medical situation. I know, from reading your book, I’m Not Sick, Just a Little Unwell, that your medical history is long and complicated. What I will ask from you is this: please explain what your condition is and what your situation is, right now.

Yvonne:  I was diagnosed with Neurofibromatosis Type 2 at 16. But the very first symptoms became apparent when I lost hearing in the right year at 13. Gradually, I lost the use of both my legs, kept falling down for no reason, until my parents had to place me on a wheelchair three years later to see the doctor. Until then, nobody could guess why my bodily functions kept failing. An MRI revealed many  tumours in my brain and along the spinal cord. I've since undergone one spine and four brain surgeries. The first two surgeries were performed at KL's General Hospital, and the next three at LA's House Clinic. Thankfully, I've regained the use of my legs, but became deaf in both ears from  tumour growths. I'm now hearing with the Auditory Brainstem Implant - something like the Cochlear Implant, but modified for NF patients.

My most recent surgery in November 2008 involved a  tumour affecting an optic nerve. I was born with an under-developed left eye, so doctors wanted to preserve my only vision left by removing the tumour surgically. But during surgery, they found the tumour attached to my optic nerve. Removing it this way would mean we need to sacrifice the nerve. Doing so would make me blind. I can't go blind, since I'm already deaf. I can hear with the ABI, but it will take a lifetime to train for speech discrimination. So doctors left the  tumour intact, but removed surrounding bones to reduce pressure to the nerve and buy us some time.

Meanwhile, I have to raise enough funds for radiosurgery by March 2009. This is the second part of the treatment. It works to kill the  tumour, preserve eyesight, and possibly improving it. The amount needed is RM94,000.00.

Aneeta: You have very active website/blog - http://www.yvonnefoong.com – I’m fascinated by one comment on your latest entry – ‘People always ask why I prefer to get treated in the U.S.. Can’t it be done in Malaysia?” In your book, you’ve talked about how uncaring some members of the medical profession are here. Has it been that bad, really? Would you care to elaborate on this point?

Yvonne: I wrote my book at 18. Being less exposed, I could only describe what I experienced and could see. Looking back, I think I can understand how these doctors come to have such poor behaviour: when we have students with average grades getting into medical school, knowing they'd be given priority anyway, these students will not put in as much effort as they should into honing skills, knowing that someone will make sure they get to stay in school. Whereas students with good grades being denied a place in medical school, in favour of peers who faired worse, have to work very hard to at least afford private education in medicine. And these students will come out into the workforce with a sense of entitlement. These are the doctors who see patients in our public and private hospitals.

Aneeta: Let’s look now at your book, I’m Not Sick, Just a Little Unwell. Tell me what it is about, how you came to publish it and what has the response been? If my readers wanted to buy this book, how would they do so?

Yvonne: This book was really a way to look back at my own life so far, write about it, and get the story out of me. In schools, we are taught to write about 'us' and hardly about 'I'. So despite going through surgeries and facing so much trouble, I barely thought much about it all, forging ahead everyday.

I started writing my book in January 2005 and ended the first draft in March. My need to raise funds for surgery came up only in November that year. Together with friends, we kickstarted Heart4Hope - a t-shirt fundraising project. As we worked on raising funds, John Ling edited the book. After some rounds of rewriting and adding chapters, the book finally got released in August 2006. Money made from the sale of books added to the funds we raised for my Auditory Brainstem Implant.

Today, people may think that my book is all about fundraising. After I get the funds, they would stop buying, until my next surgery comes around. Of course, I do appreciate that my book has become another fundraising avenue, but I also hope it would be seen for what it is.

You can find the first edition in all MPH, Popular, Borders, and Kinokuniya bookstores nationwide. There will soon be a new edition by MPH Publishing to raise funds for my next surgery.

I can also deliver orders internationally and receive payments through PayPal. Just send me an email at yvonnefmn(at)gmail(dot)com

Aneeta: Let’s look now at the t-shirts. Tell me about them? Again, if my readers wanted to buy this, how would they do so?

Yvonne: We discovered that my Malaysian surgeon at one time, could not entirely remove a hearing nerve  tumour back in 2003. He got half of it out, but left me with facial paralysis. He suggested we use radiation for killing the rest of that  tumour. But a U.S. doctor who was an expert in treating this  tumour advised against the use of radiation on it saying that doing so rarely worked in the setting of my genetic disorder. That was Dr. Rick Friedman who eventually removed that  tumour surgically for free. There were no side effects, no further paralysis. He did a clean job!

The following year, we discovered another  tumour of the same kind growing and affecting hearing in the other ear. But St. Vincent Medical Center, the hospital where Dr. Friedman and other associates of House Clinic perform surgeries, could no longer cover the cost. On top of that, I needed to pay for the Auditory Brainstem Implant worth USD30,000.00

I've already experienced two major surgeries in Malaysia and still continue to visit local hospitals for periodic check-ups. They really pale in comparison to the sort of treatment I get from House Clinic, where Dr. Friedman is. House Clinic and SVMC helps me stand tall. They don't say, "You are here on charity, you sleep in third class wards". No, they showed me what hospitality and healthcare really stand for. Having experienced such grace, I insisted to go back to House Clinic, under the care of Dr. Friedman and his associates, and obtain the Auditory Brainstem Implant.

Together with my friends, we designed, produced, and sold Heart4Hope t-shirts. The campaign attracted media attention. People around Malaysia bought, so did supporters abroad. Others donated in a lump-sum. This project turned me into a public speaker. It built my confidence and helped me discover who I want to be.

We managed to raise USD58,600 to remove an Acoustic Neuroma and to purchase an Auditory Brainstem Implant that year.

Heart4Hipe is still going strong today. It continues to raise funds for my everyday healthcare. Since I am uninsured, I need to pay everything out of pocket, even in Malaysia.

Right now, we are selling a newly designed t-shirt called the Heart4Hope Ambigram to save vision in my right eye, which happens to be my only sight left. The other eye was underdeveloped.

There are pictures of the t-shirt at my website www.yvonnefoong.com Send me an email to place an order and I'd post the tees to your doorstep.

Aneeta: In addition to all this, I understand that if people would like to donate directly to a fund set up to help you, they can. How do they do this?

Yvonne: They can do so by writing a cheque out to 'Rockwills Trustee Berhad - Yvonne Foong NF Trust'. Be sure to write all of that sentence. Then send it to:

Alfin Majid

Wisma Rockwills

No. 62 Jalan 1/31A,

Off Jalan Klang Lama,

58200 Kuala Lumpur

If you write your name and address behind, Rockwills will send you a receipt too.

Malaysians have the convenience of direct bank deposit.

Account no. 5142-3580-5099

Bank: Malayan Banking Berhad

Account Name: Rockwills Trustee Berhad - Yvonne Foong NF Trust

Rockwills’ Company Reg. No: 708932-T

For those who would like to send a donation via PayPal, please send an email to yvonnefmn(at)gmail(dot)com.

For all other details, please visit my website, http://www.yvonnefoong.com

Aneeta: Yvonne, in writing your book, I’m sure you had to use some of the elements of storytelling. What advice would you give those who would like to venture into storytelling?

Yvonne: Well, there are schools that teach us how to structure paragraphs, organize sentences, and develop the plot. But what helped me get started was passion to live and be alive. We can be so excited about the events of today that we want to tell and share it with others by writing. That's how it was when I wrote the book. And that's how it is writing my blog at http://www.yvonnefoong.com. I usually do not think too far. Just read what I like to read, write whatever that concerns me, and the story develops.

I think that's the ultimate issue we have to face in Malaysia. The culture here is too constricting, people are not expressing enough, and when we do, we do it rigidly. Our lives are very structured indeed!

Aneeta: Yvonne, this is all I have to ask. Is there anything you’d like to add?

Yvonne: I've been asked many times when my next book will be out. Well I tried, but it's difficult. I prefer to write about things other than myself these days. Things I observe and see, issues that I want to advocate, and the people around me. Perhaps it's all part of human developmental process. I've been through the initial stages of developing a self-identity, by looking back at my life and see it as a story. Doing so resulted in my book, "I'm not sick, just a bit unwell - Life with Neurofibromatosis". Now that I've achieved that, I move on, and look beyond the self. Maybe next time, I'd write books about my view on social issues. But nah, don't think others would pay for that!

Aneeta: Yvonne, you’d be surprised! You’re an inspiration to us all and I thank you very much for sharing your story here.

Yvonne: You are most welcome!