I want to emphasize on this Number 1 survival skill for Neurofibromatosis patients. I will say it quick and straight to point so it hits home.
The first thing to do is find a surgeon who can remove a specific tumor safely.
Remove the tumor surgically once and for all safely.
Neurosurgical skills today is already very advanced, can do almost anything. Just need to find the right surgeon. Radiation is a second best option in most situations.
Do not fear pain, be brave, because the fear of pain will not help you to survive. This is my survival skill I learned from my own life experience as an NF2 patient.
People who live around the Klang Valley of Peninsula Malaysia often come to me, asking me for information on where to seek psychiatric/psychological services for children and adolescents. Here is a list of options I just obtained from my friend, Dr. Susan Tan Mooi Koon.
-Hospital Kuala Lumpur
Please refer to their respective websites for contact info and schedule your appointments yourself. Good luck!
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.