It must have been my early life experience as a ballerina and Aunt Ivy’s buying off pretty dresses for me as a child. I like to have my portrait taken for some reasons and those must have been the reasons. I have a deformed left eye but I do not mind it. I have a crooked smile but I am not shy about it either. I once asked my first PA to help me take pictures of myself using my phone’s camera. She too remarked that I appeared very natural in photos without any deliberation.
Somehow, I have also been blessed with people who like to take my portraits. There was Cheryl Leong and her digi cam from my secondary school, now there is Yee Fan, a volunteer photographer who does not charge me for my vanity.
I like seeing myself in portraits no matter how imperfect. I guess that means I like my life the way it is.
Long ago, way before I developed neurofibromatosis, I wanted to be a psychologist to help people. I just wanted to help people with no concern about the salary. Later in my teens, I considered majoring in social work in college and serve the community humbly. I knew pay would not be much. I would be happy and contented with modest living.
Then my genetic condition caused me to lose my physical abilities gradually and had to make use of any abilities I have left like when I lost my hearing, I learned to write better. When my body became more restricted, I learned to be patient and gentle like an ideal social worker. When my left vocal chord became paralyzed and my throat muscles weakened, I learned to speak succinctly and movingly with a few words.
So happens, as my physical abilities diminished, I became an uncommon person with uncommon abilities that garners attention, support, and contributions.
Some of my friends think I am an entrepreneurial and smart in making money.
It is not so. I am not doing what I am doing for money’s sake.
I am just an uncommon person, making whatever I do uncommon too.
If I did not have neurofibromatosis, I would be contented with humble living, humble and ordinary living.
They say that learning is a lifelong journey for many things.
For me, that includes believing and trusting another person with major undertakings of my life.
By the trick of circumstances, I grew up to be an independent, self reliant and autonomous person. It helped me to progress fast on my own.
Finally switching to a slower mode of letting someone else do what I want to achieve for me, takes determination and willpower too. Because the temptation to stop waiting and being patient, and just do it myself, is always there. Patience and faith takes practice.
Too bad I live in the city. If I live by the ocean, then I would go sit at the beach and watch the sunset to exercise patience. I miss Venice Beach in Los Angeles. The Santa Monica pier is a bit too cold for me to stay for hours although it is more accessible.
Being physically limited may not be a bad thing sometimes. Helps me to slow down and be more relaxed. I used to be a neurotic person who not only stress myself but the people around me too. I have learned to be calmer and slower.
While I do this, I noticed that others are living like white mice. I wonder if it is me who no longer rushes or is it them who are moving faster than before. Can anyone enlighten me?
I am learning that less is more. In words, in actions, and even in time.
My part time PA remarked how I could accomplish so many things when I have only 3 hours with her (she only comes 3 hours a time, 3 times a week).
I reflected on it and I realized that I am probably more productive with just 3 hours in this condition, than having 24 hours fully autonomous because when I was fully autonomous, I procrastinated a lot.
Nowadays, most of the day I live slowly but write down what I want to do. So when my PA comes, I get it all done in just 3 hours with her help.
So I cannot say that being physically limited is an entirely a drawback.
Recently, a parent of an NF2 patient drew my attention to a blog post with my story together with a product called Prolife Energy. I wish to clearly state that I have never used this product. Someone invited my mother and I to a place to try it one day in 2011. When someone at this place explained how it works to me, I declined immediately because I was worried that the energy it emitted would damage my Auditory Brain stem Implant in the brain.
I was surprised to see they used my story and my condition to promote the product without my knowledge even when I declined using it. I am saddened that such a thing happened. I hope such will not happen again. When you see articles about Prolife Energy and me, please take note I do not endorse it.