My new vision impairment resulting from post-operative management following my most recent brain surgery has made me reflect and reconsider my choices in life. In early 2010, my NF 2 friend from Washington state, told the Chief Investigator of the NF 2 study at NIH about me and asked if they would consider accepting international patients. He said yes and I happily submitted my medical records for his evaluation. I seized the opportunity because by participating in the clinical research, they would do my surgeries there as long as the surgeries could be done there. I knew that I will one day build a foundation to help others so I wanted the liberty to do so without having to worry about my own medical costs.
Participating in the clinical research studies had been fun. It was an eye opener in many ways. The NIH Clinical Research Center, as a government-funded facility, is equipped with sophisticated infrastructures and most of their staff who had cared for me in the last 6 years were good and kind people.
But US as w whole underwent major shifts economically and politically in recent years, which affected the institutions ability to do their best for patients. No one had told me this explicitly so I made my own observations. I had always known that their post op care was less than ideal. But my previous surgeries done there were relatively minor. So I was fit enough to take care of myself after surgery and get discharged as soon as possible. My latest brain surgery there however required a ward specifically equipped from brain surgery patients. Most of their staff were not prepared enough to manage acoustic neuroma post-surgery care, which led to my eye drying up due to facial nerves irritation. Most of them tried to do their best for me in their limited capability but sadly, it was not enough.
The staff there showered me with love and sincere concern, which I was thankful for. But during my time of reflection, I looked deeper into myself and decided to make a better decision for the benefit of my own wellbeing. Since I am building a foundation that will partner with KECK School of Medicine, University of Southern California to help other NF patients, I might as well let myself be treated there as well, by Dr Friedman and his colleagues. Not only will it be convenient for me to achieve two goals in one place, but it is also one of the first health care that I give myself.
I have known Dr Friedman for 12 years now, he is someone who strives for excellence in everything he does-in life. In order to carry out my life’s calling, I need to maintain my own quality of life which means that I need doctors like Dr Friedman who would take care of my health excellently regardless of the situation.
Hence I decided to send my medical records to a neuro surgeon in his team for them to start taking care of me.
It should not be surprising that, it is people like Dr Friedman who will be keen to pursue my foundation mission with me eventually. My foundation is not a simple mission. In many parts of the world NF2 patients became paralyzed and perished after just 2-3 surgeries. This foundation aims to change many people’s fate. Not many will be willing to step out of their safety zone or have the courage for such an endeavor. In many countries people would not even speak about the mortal truth of NF2.
Behind every dark cloud is a silver lining. The damage to my vision is costing me a lot but it also brought me a priceless and important realization. I must be excellent in every way. There is no compromising. We only have one chance to live.
I do not yet know how I will pay for my own treatments at KECK. But I will work by faith and take one step at a time.