Ballet was once my passio. I danced ballet thru seven of my formative years. I even hoped to eventually obtain a Diploma from the Royal Academy of Dancing in Great Britain. When my spine started to weaken at age 14, I had to quit ballet, but not before obtaining a Highly Commended at my final examination.
I tried hard to suppress the pain and loss of not being able to dance ballet well again this lifetime. I used to get nightmares whereby, in my sleep, I dreamt that I have neglected to attend classes and a final examination was coming up. This trauma very slowly reduced over the next fourteen years as I made and lived new dreams.
Looking back, even though my time as a ballerina was short, it was enough to build a foundation for grace, individuality, self-confidence, and self-assurance in me. I will always feel grateful for that chapter of my life in remembrance.
I’d like to clarify on what strong will means. People often mistake strong will as a condition, so they would say they can’t do something because they don’t have a strong will like me.
The word Will in Will Power actually means Willingness. Most of us were not born strong willed including me.
During the hardest part of my life, which was my early childhood, I had no strong will power. But I was willing, willing to become strong like my Aunt Ivy, who could handle great stress and heavy responsibility without anger or resentment. I was also willing to become compassionate and kind like her, who took care of others selflessly. So, despite the intense pain and agony I was enduring in my early childhood due to my father’s stroke, i did not resent as a child. I was always trying to understand and figure out how to become independent, how to be compassionate.
It was my Willingness that strengthened me over 3 decades.
Strong Will means Willingness. So, if you say ‘I can’t handle this, I can’t progress, I can’t see beyond my problems, because I don’t have a strong will’ you are actually revealing your character rather than your condition.
We do not need to have will power to overcome challenges. We only need Willingness.
Willingness is a conscious decision we make every moment.
In January 2014, a new telecommunication product was brought into Malaysia that would eventually revolutionize the way we commute around cities. This product is called Uber – a mobile device application that enables us to book a car to pick us up wherever we are and send us to our desired destination. In the urban city of Kuala Lumpur where access to public transport is too often a challenge, especially for people with physical disabilities like me, Uber came as a much-awaited relief.
In conjunction with International Women’s Day 2015, Uber featured me in a video as an encouragement to the women of Kuala Lumour.
Want to use Uber too? Sign up today through me and receive free credits to take your first ride.
Here is something important which I want to clarify.
My foundation is to help patients get proper treatments. Not to support research or find a cure. There are already enough efforts underway to find a cure for NF. The US contributes millions to NF research annually. My foundation addresses a more urgent and immediate need. Patients need proper treatments NOW. Look at me. I’m still not cured. But I received proper treatments. Even after 17 neurosurgeries, i’m still standing tall.
Proper medical treatments preserve our lives and vitality even though there is no cure.
In Malaysia, only people of affluence or those in the upper middle class society can afford proper treatments for a condition as complicating as Neurofibromatosis.
The public is in dire need of not just monetary assistance to get treatments. They also need to be educated on their condition and guided to make informed health decisions for themselves.
In Malaysia, NF patients do not qualify for private medical insurance, while public hospitals are too often inadequate to treat us.
Can you imagine the fear, the anxiety, and the helplessness plaguing NF patients here?
A total cure for our genetic mutation is not a desperate need as access to proper medical care in South East Asia.
This year, I am bringing my cause back to where it all started, to the continent called America, but not for my own medical treatments. I will be going back this time on a speaking tour of the United States to raise funds for my foundation.
I have a marketing manager in USA organizing the tour. Over the past one month, he has pitched me to a world leading automotive company as well as producers of the largest radio station within America and internationally among others. Avenues in Washington State, Los Angeles and Florida are in the horizon.
Returning to America has great personal significance. It was in America, in the year of 2004, that I experienced hope of preserving my life and dignity as an individual with a potentially debilitating genetic disorder. My first surgery visit at House Research Institute in Los Angeles at the age of 18 changed my life forever. I can vividly remember how I felt while looking out the window as my Malaysia Airlines flight flew pass the dessert as it prepared to land at Los Angeles International Airport in September 2004. I was in disbelief.
I also remember how I felt as my departure flight climbed in altitude two weeks later, sending me home to Malaysia. I asked God to please let me come back again. Please.
And He did. He took me back to the United States few times a year ever since, to receive life saving treatments time and time again. All I had to do was make informed medical decisions with my choice of doctors, plan the cost of surgery and visit, and make my own efforts to raise the funds. That was all. He did the rest. He moved mountains, led people to help me reach my goal. Time and time again. I have had 17 surgeries to date. Only three were done in Malaysia. The rest in America.
That’s why my faith in Him is so strong today. God and I have been to the brink of death and overcame it. He showed me what it meant to be decisive and determined to survive.
Returning to America on a speaking tour would be like a commemoration of my life extension, which is a miracle, and God’s love to me.
My marketing manager is in the process of securing sponsors for my tour. If your organization would like to help out in this endeavor, please let me know.