Yvonne Foong: Fighting NF

My flight to L.A. will depart this Saturday (31st July 2010) as there are no flights on the 1st. Malaysia Airlines is sponsoring our air tickets but we still have to pay airport tax and surcharges costing RM3304. Hence, my funds needed increased a little. But the fund raised is also increasing.

I have faith that the needed funds will be raised by Friday morning. It has to be raised by Friday morning so that I can transfer the funds to the U.S. that same day. TT to the U.S. can take up to 4 days to clear. I have to go to the bank and transfer the funds myself as the bank account is under my name.

Despite the little time left, Friday is only two days away. I must have faith. There is no other way but to have faith.

Because headache and nausea will start once the fluids trapped in my brain increase by a bit. It will become an emergency and I might not be able to travel far. So I must get to the U.S. as soon as possible.

I will be in safe hands once I get there.

Thank you all for the support and encouragement. I am comforted by your help in this time of desperation.

Raised RM5,000 at City Harvest Church on July 24th and 25th 2010

I am still short of RM25,000.00 for the surgery on 3rd August 2010. Let me know if you can help.

Raising funds for surgeries in public evokes my deepest emotions. While I waited for Ps. Kevin Loo’s sermon to end in City Harvest yesterday, I prayed. I asked God to fill me with love, hope and gratitude. Let God’s hope and love show through me. Let my presence bring love and hope to others. I also invited God into our midst and felt a warm, fuzzy feeling in my heart.

But this also means that I must set my own worries aside. Push them to the deepest reserves of my heart and fill up the additional spaces with love. Expand my heart. Then try to let the love shine sincerely.

For awhile, that worked. I would feel loved and happy to meet my supporters.

But I woke up in the middle of my sleep tonight and I remembered, I remembered everything.

I remembered Pei Lee whose mother, brother and sister have died from surgery complications, from battling NF in Malaysia. I remembered the formidable surgeons I met. I remembered being left in the dark not knowing what to expect from surgery. I remembered the helplessness of patients who sought my advise on where to turn, the apologetic patients who sounded sorry for being born.

I want to assure those around me that I am alright, because I am in the care of good doctors. I want to assure other patients that living with NF is not so bad. There are many who earn postgraduate degrees and work in the field of medicine themselves.

Above all, I want to show surgeons in Malaysia that NF patients can live long and full lives too if only we are treated carefully.

This is a desperate passion of mine, rooted in my unconscious.

Awakened from my sleep, I prayed and remembered something else. God knows, He knows my desperate passion. I am not alone.

Raising funds for surgery is tough because it involves convincing people. Most people want to help, but we still have to convince them that the surgery is important. My heart feels tired sometimes, so I must always be conscious of God’s presence. He is with me, with us. We need to remember Him. He is watching us from above.

I tend to forget that Pei Lee’s case is different. She inherited NF2 from her mother. Besides herself, Pei Lee’s older sister and brother inherited the gene as well. All of them had passed away from surgery complications. Pei Lee is the last surviving NF patient in her family and is very afraid of having surgery locally.

The Neurosurgeon she sees recently suggested to remove a brain tumor of hers. He said it has grown. But Pei Lee does not believe. She said the doctors here just want to operate on them.

In response, I told Pei Lee to ask the surgeon what tumor this is and which nerves it involve. But Pei Lee said he will ask her back, “Would you know?”

It does not matter whether she fully knows what you mean or can understand immediately. It is her right to know. If she doesn’t know, you have no right to operate on her.

This new portrait used in my blog banner was captured by Choong Moon Ting on 9th April 2010 at dusk in my living room. Except for a portable black screen as the backdrop, everything else was natural. He did not even use the camera flash which would have caused my pupils to suddenly contract and look uncomfortable. Of all my portraitures by far, I feel this one brings out the best in me. My character.

I want people to take me as who I am and not your ideal girl.

My main physical defect is obvious. My left optic nerve and cornea were undeveloped prior to birth which make this eye blind. An alleviated disc tilts the eyeball.

Long before I was diagnosed with Neurofibromatosis Type 2, I struggled to accept the way I am and rise above my physical conditions. There were the curious passersby who couldn’t help starring, some even stopped to ask what’s wrong. I would shrink back and look away in those days.

Even my own family members picked on my deformity.

Fortunately, my foundation of life and the development of a healthy self-esteem was set in my early childhood before I could remember. My father had his brain hemorrhage when I was only three. The attachment between my father and I was always ambivalent and avoidant. I could never run to him whenever I was scared and needed comfort so I had to self-regulate these feelings inside of me. My father’s younger sister, my belated Aunt Ivy, was a major influence. While the last straws of my parents were pulled, Aunt Ivy stepped into my life, safeguarded my childhood by providing for me in ways that my parents were unable to. Despite being the youngest sibling, Aunt Ivy was a strong woman. She was gentle but firm in principles. She never told me off for my foolishness but showed me how to live right by the way she led her own life.

Later on, raising funds and campaigning for my better medical treatments in the U.S. strengthened me further. The public’s support reaffirmed my beliefs and convictions.

Whenever someone takes a second look at me in public these days, I would assume that they are recognizing me. I would meet their eyes and smile as if meeting an old friend and they would smile back.

For those people who looked not because they thought I seemed familiar, they are only curious. It’s an innocent human nature to be curious and concerned. So I would also smile back and if they ask, I would gently explain that the optic nerve and cornea are underdeveloped prior to birth. Then I would smile broader and nod to mean it’s okay, I am comfortable with the way I am.

I believe that self-esteem cannot be given by another person. It has to come from within ourselves. These days, no one would think less of me for the way I am. Those who would are no longer in my life.

I will personally be at City Harvest Church, Kuala Lumpur this weekend to raise funds for my 3rd August 2010 surgery. The Heart4Hope Original t-shirts and my books will be on sale.

Times:

Saturday: 6:00pm – 7:30pm.
Sunday: 10:30am – 1:00pm