Contingency

Yesterday, a friend of mine visited me at home and told me that someone had publicly questioned my integrity on Facebook, referring to my foundation fund raising. This happened sometime in April 2016 when I had just returned from three major surgeries in US. At that time, I was struggling to adapt and adjust to my newly damaged vision so I could not read anything. Plus, I was extremely fatigued and slept most of the day. When my friend cautioned me , I felt a little troubled but mostly surprised because I was raising funds using products that were originally meant for my own medical costs. I was merely diverting the funds to help others instead.

So I spent my quiet time alone introspecting and decided for myself that, if the public absolutely doubts my integrity, I am prepared to pass on the funds that I have raised for my foundation project, to another existing charity so it can use them to help NF patients instead.

This charitable society, however, does not have the means or resources to help complicated and critical NF cases get lifesaving treatments. No local entity does, which is why I am attempting to build a foundation for that purpose.

Although it is limited in its ability to help complicated cases, it can assist the mild ones. At the time of writing this post, I have in my hand, RM40,000 meant for building my intended foundation. If the public absolutely doubts, I am willing to let it go.

I can still assist other NF patients in non-monetary manners like I always have been doing. Money is not important to me. Love is.

Excellence

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.

Self Care In The Midst Of Tribulation

Self Monitoring

People often asked me how was my health but I did not always reply at length because sometimes, people ask out of politeness or that they did not know what else to say. In such situations, once I started describing my health progress in detail, the other person will lose interest evidently. Over time, I started providing brief answers just to be cordial as well. Ha ha.

But there are those who really meant to ask the question especially when they have contributed and still want to contribute to my personal health care costs. So I have remind myself to update these supporters of my on going health and medical plans and not be too consumed with my foundation work.

On 3 August 2016, I did a bi annual MRI of my whole brain and cervical spine at Assunta Hospital in Petaling Jaya, just a short drive away. My local neurologist Dr Raihanah Abdul Khalid ordered for the tests. I have just sent the results and scans in a dvd to my neurosurgeons at the US National Institute of Health for their reviews. To be safe, I also sent a copy to my previous neurosurgeon Dr Gregory P Lekovic at House Clinic in LA for his evaluation too. The team at NIH manages NF2 somewhat differently from Dr Lekovic. I want to be extra careful so maintain my quality of life for as long as possible, hence I sent to Dr Lekovic as well. But to save money, I sent using air mail this time instead of Fed Ex or Pos Laju. Ha ha.

I have also been working with my speech language pathologist, Cecilia Santiago, at Sunway Medical Center. We did a varium study in June and have been working on exercises to strengthen my ability to swallow safely. Another exercise was also taught to me for strengthening my soft palate so that food will not go up my nostril. Cecilia is very good at her job.

My ophthalmologist Dr Meena, at Assunta Hospital has been treating my extremely dry right eye with a different medicated eye drops. She said that there is no cure for dry eyes, so we can only prevent it from getting worse and pray for the best. For those who are unaware, the vision in my right eye went downhill one week after my acoustic neuroma surgery that took place on 1 February 2016. During that surgery, the facial nerve was preserved but irritated. So not only was my face weaker temporarily, my right eye also became dry due to the lack of tears which has not improved till today. When I thought that my right eye was too dry I asked the neurosurgery doctor to order for eye drops. I was provided with Refresh Plus but it was insufficient and I did not know better. By right I should have been given eye gels in the list. It was also winter and after a big snowstorm, which meant that air was especially dry. So my vision went downhill in the week of Chinese New Year.

Now I cannot see well enough to go anywhere by myself and difficulty locating objects on a table. Y part time PA has to come and help me do things throughout the week. Moral of the story we must be diligent and alert with our physical needs when receiving treatments at the US National Institute of Health because doctors taking care of the ward and in patients including those who just had surgery, are mere residents with very little clinical experience to help them identify possible complications before they happen. They are mostly guided by a nurse practitioner from day to day . The nurse practitioner has been taking care of the neurosurgery patients for a few years but a nurse practitioner’s capacity and ability are different from that of an experienced doctor. The residents may call the surgeon when problems arise, but only if the resident manages to identify that a problem exist. Haha .

I think this system of operation needs to change.

It has been rather upsetting to adapt and live with my new disability, but eventually, I would have no choice but to accept and make do with what I still have.

To the people who have contributed and are still contributing to my personal and medical expenses, I thank you sincerely for keeping me in your heart even in the current global economic downturn. I have been using your contribution to pay for the extra health and life support resulted from this recent complication. Just to give you an idea, the most expensive regular medical test I have would be my MRI which costs between RM2000 to RM4500 each time depending on how extensive the test is. My speech therapy, since I came home have costed me more than RM2000 cumulatively so far. Some of my medicated eye drops are also especially costly because they contain medication in them. Doctor consultation at Assunta Hospital is, thankfully, quite cheap. I also need to check and drain fluid from my thyroid, and consult a doctor over a growth under my tongue. But as these are not hurting or disruptive, I can delay until I visit the NIH again because my treatments there are free. I try to save cost whenever I can. I try to save because I do not have any efforts to waste funds for my own medical costs now but reply on spontaneous contributions from existing supporters of mine. This is because I am not as strong or autonomous as before anymore and I cannot do much physical work. So I put all my effort into building a foundation that will help other NF patients get life saving treatments instead. Although my physicality is limited, my mind and brain are still optimal for building a foundation to help others.

This is all about my health for the time being. I will write about it again when my neurosurgeons revert with their evaluations of my recent MRI.

Look West

Look West

In December 2012, I started attempting to build a humanitarian foundation for the purpose of assisting other NF patients acquire lifesaving medical treatments financially. As a born and bred Malaysian, my 1st inclination was to build the foundation in my birth country, so I set about studying the different laws and legislations for establishing a foundation in Malaysia. I tried 2 different ways of securing the needed RM1 million capital necessary to kick start the foundation in my country. I spent several years advocating and rallying for public support among my countrymen. As I did all these many changes happened domestically and globally – socially, politically and economically. Throughout the process, I tried to adapt my strategy according to the changing circumstances. This year, my earlier quest reached tipping point, and I sensed that it is now time to move forward and build the foundation overseas.

I contacted several doctors in US who have known me for many years to see whether they were keen to help me build my foundation there. At last, it was good ol’ Dr Rick A Friedman who decided to start and take on this big project. Dr Friedman is now treating patients and teaching medical students at the University of Southern California, Keck School of Medicine. He and his team of surgeons have decades of experience treating NF. More importantly it is his true and persistent intention to help people which makes me want to work with him no matter where he is.

Negotiations with the university is now on the way for special price and payment arrangement. I am also trying to engage US lawyers who can work on registering the foundation is US.

My thanks to the several friends who have been helping me sell off my remaining t-shirts stocks. The funds received from the sale will be used to cover the cost of building my foundation overseas. Once the stocks are cleared, I would be free to travel abroad for pursuing my foundation cost.

As I will be visiting the University of Southern California frequently, I hope to find people willing to host me on my visits to that area. Hopefully, it can be someone who stays near the university so that travelling to and fro campus will not be tiring or time consuming.

No matter where the foundation is built it will still be able to help NF patients from my birth country. Whichever patients who decide for themselves that they want to come over for better medical treatment, we can help them. My ultimate goal is to empower patients so that they can empower themselves.

Hair bands

Hairbands

Last Saturday a small package arrived at my door step bearing stamps from Singapore. In the box were a bunch of pretty hair bands. They came from an old supporter of mine. She read my blog post about Mustard Seed Soup Kitchen and felt encouraged to do her part as well. Two years ago she was in financial difficulty and tried to supplement her income by sourcing and selling children hair accessories. These were leftovers from her little imitative.

She has previously sent three of them as gifts to me as well plus 2 sets of hair clips, which are still proudly and shamelessly where despite being 30 years old hardly anyone could tell my real age.

Thank you for these acts of love. I shall pass the hair bands to Mustard Seed Soup Kitchen so that they can help empower the poor