I encouraged the mom of an 11-year-old girl with NF1 yesterday by sharing with her how I coped when my self-esteem was tested in childhood.
I was born with a deformed left eye and was teased a lot in school. It hurt. But at the same time, I was performing well in ballet class and concerts, which strengthened my sense of self.
Throughout my growing up years, I was closest to my father’s younger sister, my Aunt Ivy. I was more close to her than my own mother. Aunt Ivy was a spiritually strong, independent and capable woman. Growing up with her, I learned that physical conditions do not affect us. Mind over matter, so when I was diagnosed with Neurofibromatosis, i did not think my condition made me any less. What’s important are my inner and inherent qualities.
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.