Yvonne Foong: Psychology and Neurofibromatosis

I had just completed the New Jersey Acoustic Neuroma Survey! It asked to described my experiences with Acoustic Neuroma treatments, which amount to three in total and all involved microsurgery.

I wish things the first time around were done differently. If only I was informed of all treatment options, if only I was asked to give informed consent. If only… if only… I would likely not be suffering from facial palsy and dry eyes today. I would have saved myself from emotional damages and some money from buying artificial tears. But emotions are of no value in this country. You can’t take the government to court for that or anything else.

So I must learn to look at and appreciate positive aspects. At least, they terminated my surgery after ten hours and did not entirely severe my facial nerve. Maybe they wanted to go home (hehe) so the tumor was only half removed and my facial nerve remained intact, which helps my eyelids open and close. Pei Lee was not so lucky. They snipped hers off so now her right eyelid is close at all times.

At least I can still flicker those eyelash extensions and move my right cheek a little.

The following year, Dr. Friedman and his team removed the residuals of that tumor and avoided the facial nerve, so no further damages occurred. My self-esteem after the surgery went downhill and then improved when I sought treatment at House Clinic.

In 2006, an Acoustic Neuroma on the left hemisphere was again removed at House Clinic. The facial nerve on this side was untouched.

So that was me and my past self. But many people still don’t understand the cost of not being informed about their own health condition and treatments until they suffer the consequences.

Thanks to a surgeon in Singapore who kindly evaluated ny scans and took the trouble to explain in detail, I now know more about this tumor at my frontal lobes. It is called the Olfactory Groove Meningioma!

One of the early psychiatric symptoms of Olfactory Groove Meningioma is depression. The authors of this article presented us with a case of Olfactory Groove Meningioma in the absence of any other neurological pathology. The patient demonstrated flat affect and a major depressive episode.

Am I depressed?

I have experienced an underlying Dysphoria for years. It comes with feelings of fatality and sadness. But unlike people clinically diagnosed with depression, mine was secondary to positive behaviors and perceptions.

Occasionally, I have told friends about rapid changes in emotional states. Thinking about certain matters could alter my mood from positive to feelings of morbid restlessness instantaneously. But I thought this was the product of life experiences that we normally go through with age.

The abnormality of this became apparent when symptoms of my growing brain tumors and oedema worsened recently.

I was surprised to find Cheryl appearing at the gate with mooncakes, but did not react to my own surprise. That was the onset of flat affect.

The first surgeon i consulted about my present condition advised to remove three tumors at one go. Doing so would involve great morbidity risks. But instead of viewing the situation objectively, I experienced a Major Depressive Episode. I was obsessed with the worst and started preparing for it. This is a deviation from my character.

I also experience occasional and episodic apathy whenever my brain over-exerts, such as walking to the post office recentlyy. I came home feeling blank and stagnant.

Perhaps it is important to note that these are more consistent with personality changes rather than mood disorder. This sets mine apart from the kind of depression others would experience in the absence of organic causes.

I should prepare myself for Psychological support following the removal of this tumor now.

.There is this textbook in the college library I’ve always wanted to borrow but never did. It’s something a professor in America wrote for a hobby and couldn’t wait to share, Guess what’s the topic? Health Psychology!

This may be a good time to read that book, because I am experiencing some degree of personality change, no doubt.

I met uo with a fellow blogger yesterday for tea. We have known each other for about two years now and in all those times, he was the good listener and I, the parrot. But yesterday, I could hardly think of much to say that has not been said before, not even to comment on the things my friend spoke. So I merely read as he typed on my laptop, noting whatever that was on his mind.

Difference was also apparent when another blogger named Sandie dropped by my house last week with a cheque. I had asked her to come my house thinking that would make our first meeting more personable. My past self would have been more self-conscious and careful to keep conversations entertaining. But when Sandie came, I knew only to speak when necessary. Otherwise, my eyes did the talking.

I had always scored high on the extroversion scale when it came to meeting people one-on-one. When journalists visited, I talked so much, some had trouble keeping up while others felt relieved because I volunteered insights to my cause without them having to ask. Those who met me sparingly would have thought extroversion was the main personality trait.

But that’s changing now. After returning from our get-together yesterday, I continued with my Braille lessons from where I left it, but my brain would not register. So I went to bed with a frustrated brain, as if it was a child with tantrum bouts, ‘I don’t know! i don’t know!’.

Brain surgeons can’t explain these phenomenons so I would have to investigate it myself. Guess I picked a suitable vocation, eh? And I’ve actually intended to study psychodynamics of using the A.B.I for my Honors program. But you never know, life often leads to places you’ve never imagined was possible

Mom took the week off recently. The joints at her ankle hurt from standing all day as a retail sales assistant. Having her around again an entire day sure changes the atmosphere. But sometimes, Mom has fleeting ideas. She wonders about quitting her job. She has always done so; Going back to work, then ‘retiring’, and back to work again.

So I made a point about the integrity of her present employer. Previous ones were petty, hardly paid on time, and had little regard for her welfare. This one seems to treasure my mother more. Just recently, they even spent us a box of chocolates from Korea.

“Moreover,” I said, “Your cats and dogs are so fat now. Think how thin they would become if you quit!”

So every time she talks of resigning, I’d say her pets will slim down. So pitiful!

A while back, Cheryl remarked how unfortunate it is that my mother has to work in her old age. But I said it gives her purpose.

When I raised funds vigorously between 2005 to 2006, my mom had not held a job for some time. Little knew about the effects of her staying home until we dealt with my project.

Mom had become so slow, that she acted without thought and made silly mistakes. Her higher executive functioning was terrible.

But now she has learned to think ahead of her actions, to consider possibilities and alternatives. She is no longer quick to brush off mental tasks and she enjoys running chores. Back then, everything was a hassle, everything was too much trouble. But now, she fills her off-days with plans.

Like yesterday, she insisted walking to the post office for some errands although I could have fried an egg on my head out there. “You mad ah? Go in the evening!” I exclaimed. But she did not listen.

I was practicing Braille and she was bored.

Back then, she would have just lazed in bed with apathy.

Through grace, I have been blessed in many ways by other people. My own family lives on a modest budget and the only other country I have ever been to is the United States. Yet this one country is eye-opening, One year, a relative spent my cousins and I to Disney World in Orlando, Florida. We were at Magic Kingdom when our mothers rode the Merry-Go-Round, giggling as they went, My cousin brother who appeared unimpressed with the entire trip remarked as he stood watching beside me, ‘Childish. What’s so nice about that ride?’.

I could still hear then, and so I turned to face him. I saw an expressionless face as if the whole theme park was below him.

Even though I did not think much of it then, this scene remained in my memory until this day. And reading Randy Pausch’s book reminded me of it.

My cousin was studying to become an Electrical Engineer,

And Disney World is an engineering wonder.

Engineers like Randy Pausch spend a lifetime chasing dreams and reinventing Disney World

Even my friend from high school did his best to score high in his SAT, to secure scholarships and study Engineering at Carnegie Mellon University. That’s where Randy Pausch taught, and that’s where so many engineers live out their childhood dreams.

Yet many Malaysian students would never know what it means to chase those dreams. Sad, isn’t it?

I have completed Grade One Braille! And now I am starting with Gfade Two. But first, let me review this incredible book I had used to learn with,

When Eddie helped call up American Printing House for the Blind to ask for this book I got my eyes on, he was told that a set of three volumes came in both Print and Braille. Or at least that’s what I thought he meant. So I anticipated to put both versions side by side and learn that way.

But the books turned up in Braille only. The first has sixty pages, and all sixty pages were braille. If you don’t touch it, you see nothing but white empty pages.

That was so intimidating! I panicked!

But the book author outsmart me.

This isnt just any book, but designed as a textbook that can be used on it’s own without extra guidance. It is as if the book could think. It knows what you need to know first and what should follow next.

This isn’t a dictionary where all signs are laid out like a chart for you to memorize. No, not at all. This is like a whole teacher. Each lesson introduces new things that expand a previous lesson. As human beings are not robots, this book does not pitch you on a progress chart or make you feel as if you have a schedule to follow. In fact, each new page is unpredictable. For example, you don’t expect to learn B after learning A. It always made me curious as to what the next page holds and that got me reading page after page.

And without realizing, the way this book was designed and organized opened up my mind through my fingertips just like that. There was no need for military-style practices. This book stimulates the creative mind to learn naturally.

By the third half, I was already reading passages with Grade One Braille. The final passage was the speech of Martin Luther King Jr. “I Have A Dream”.

He dreamed of social equality for the Blacks in America, and I thought how significant that passage was to my new found talent.

Remember the phase? Give me liberty or give me death!

Learning Braille is my liberty from Neurofibromatosis. I am not afraid of blindness anymore!

You should get this book

It’s always important to invest in a good book. Trust me, many times I tried saving money and settled for cheaper textbooks. Not only were they disappointing, but they also made me regret that the money could have been better spent!

So consider getting this textbook I have used when you want to learn Braille.

Call APH at 502-895-2405 and ask for ‘Getting In Touch With Reading’ by Margaret M. Smith. It comes in three volumes for Grade One and Grade Two Braille. Do take note that these books are for adult learners. Good luck!

The hardest task of managing illness is in striking a balance through moderation. We need balance in our diet, our habits, even our life perspectives.

Asian societies are known for our Work Extremism. But unlike Middle East militias and their explosives, we use mind bombs.

I recently advised the mother of someone with Schizophrenia that seeing the Psychiatrist is not enough, Her daughter needs to be engaged with activities to help her live in spite of this illness.

The mother acknowledged my advise. But just a week later, I found out she encouraged her daughter to work. The daughter did as she was told and is now a retail sales assistanr. But she could never hold a job for long being in this condition.

Knowing her daughter’s state, this got me so furious that I slammed my Braille book midway through.

Then I sent the mother some text messages. “Why don’t we encourage her to take up sports and exercise? Why don’t you go swimming WITH her? She needs our company because when she comes over to my place, she would not fall asleep on her own, she rather sleep with me, even on the floor.”

The mother said her daughter took up sports as a child but gave up. So she thinks that sports is not what her daughter wants to do.

“Maybe because as a child, she felt that she could never be better than her brothers, We can encourage and support her now. Tell her that we are happy with her commitments.”

Sometimes, parents don’t realize they are treating their kids worse than the military. No emotional attachment at all.

When this patient was told to study, she had to do it alone. When she was told to get a job and work, she had to do it alone. Yet the mother could not see this as a problem, thinking her daughter should be made independent.

From an outsider viewpoint, it is obvious that this girl needs to feel loved. She likes to come around my place. Maybe because my family is simple, and she likes this closeness she can’t get from her own family.

If you love someone, spend time with them. This is something money can’t buy and Psychiatrists can’t replace.

Ever wondered how you can help me out without having to buy a tee or donate out of pocket?

While on medical leave from college right now, I am taking the time to do up my site again, to make it more readable.

Check out the link beneath every blog post that says “Digg This”

When you surf my blog first thing in the morning and like what you read, click on this link to digg my blog post.

Firstly, sign up for free with Digg.com and log in. Now you can digg every of my blog posts by clicking the ‘digg this’ link beneath. Doing so would bring you to a new page where you need to describe a little of what you’ve just seen, and maybe why you think others should take a look.

If enough people digg my posts, they would be linked from the main page of digg.com where millions of users would get to know this blog all thanks to you for sharing.

This increases my readership and people who view the ads on this blog, which then leads to blog income.

I need these to pay for educational materials and afford a simple stay-at-home lifestyle. So Digg me!

Noticed that I have re-installed Google Adsense on this blog? Knowing that might agitate some readers, I have decided to put a black border around these ads, save the one on my sidebar. That is so you know for sure what you are looking at is an ad. No trickery here, I am transparent.

Vegetarian Restairant noodles for RM2. Go support them!

I have come to the end of my first Grade One Braille textbook and decided that I should read as much as possible before moving onto Grade Two.

Grade One Braille is Uncontracted Braille. Meaning I read words letter by letter. I view language and reading acquisition as a creative stimulation of the brain. It provides us with experiences that we don’t get by watching TV. Reading by touch beholds the world at my fingertips. Having just acquired this ability, I want to linger some more, to absorb it,

But Braille books are expensive. Not sure if Malaysia has a library for the blind, but commercial bookstores do not seem to carry them. Ebay has got some of the cutest collections of children books in Braille, but they come with a price too high for Malaysians, especially one who is unemployed.

I need the money to study.

In May, The YellowPost ceased publication and my stint with The Malay Mail lasted only one month. I was just not cut out for writing humor and entertaining people. I could have approached some tabloid – they are all over the places now – and get paid for occasional contributions. But the thought of writing to please people got my better judgment and I decided that time was better spent focusing on my studies. That was four months ago, my personal savings are dwindling. So it is now Adsense that I am turning to for finances. Please bear with me.

I have always needed a new desk chair to improve my back support. But having been raised the Buddhist way with Aunt Ivy, replacing one that isn’t broken is like growing worldly Attachments. I don’t want to be tied down to this house, so for years, I have used a wooden dining chair at least two decades old that ached my back.

Reuben tells me that Siddharta Gautama taught His disciples about the Middle Path in His time because people then were at two extremes. They were either living in seclusion or ecstatic towards cultural practices. Too much of one thing is never good, so the Buddha taught us to strike a balance.

But as time passed, the understanding of Buddhism spread and was interpreted so widely that sometimes, this notion of Detachment seems impractical. To answer why doesn’t it seem practical anymore, we have to go back in history like I just did. Ah, then we can see that it is still relevant today. We just need to view it in context.

I have also misunderstood. One does not need to curb our feelings or prune relationships. Achieving Detachment the Buddhist way does not mean we ought to live like monks (although the monks might think so).

Detachment comes with Acceptance.

When I started raising funds for surgery in 2005, I received so much kindness from people that I could not even imagine was happening to me. It caused me to feel shameful for my own lack of kindness and guilt for not being worthy enough to have received them. This was my Superego acting up, like Psychologists say. So after coming back from surgery, I struggled very hard to reinvent myself. I wanted my donors to feel they have supported a worthy person.

Then Pei Lee came along. This was a big blow to my conscience. Although we both endure the same illness, Pei Lee has been given much less opportunities to develop her talents. This seemed like injustice. It was not fair for me have such comfort while Pei Lee lived in misery. So I thought of many ways of how I could help.

But it did not feel right. Was I really helping Pei Lee? Whenever we met, I was always the one keeping conversations alive, leaving Pei Lee to piece the bits and pieces of whatever I said. Sometimes, I wondered if she heard me at all. Was my encouragement what she really needed?

I soon learned that is not always necessary.

Pure Altruism does not exist. When we attempt to be absolutely altruistic, as I have tried while reaching out to Pei Lee, we risk crossing personal boundaries and force our lives onto the people we try to help. Altruism often leads to the denial of an individual’s value, as Ayn Rand puts it.

So instead of doing charity and being altruistic, Ethical Egoists favor the promotion of one’s own self-interest. This enhances personal agency and autonomy - in Scientific Psychology language. Self-interest here refers to the betterment of one’s quality of life, such as through education and a stable career. Do not confuse it with materialism. This theory holds that when everyone is capable of securing and maintaining their own interests, they would become independent and able to take care of themselves. This creates a much better world than one filled with multitudes of charitable organizations that magnify the hardships of some groups of society, turning them into a vicious cycle. As if sufferings were an identity.

I came to a close brush myself. When I began to raise funds, I started to think like a PR officer and view the world from the eyes of Media Agencies. It wasn’t hypocrisy. Everything I said under that frame of mind still had to get the green light from my conscience. Do I believe in this? Yes, then it is okay to say. Ah, but is it news worthy? Yeah, but maybe in the second paragraph, not the Lead.

That was who I thought I was. But as I got behind the microphone and met people who wanted to know how a girl dire of surgery would be, I guiltily appealed to them for understanding. I told them that I used to dance, skate, and sing. Now I couldn’t. And I wanted the ABI so that I could continue to hear.

The benefits of the ABI is real. It helps me to be aware of my surroundings and saves me from danger, especially walking on streets. So I did not lie.

However, as I appealed to people for empathy and kindness, I was silently appealing to myself for Acceptance.

But matters got worse. Here I was, trying to feel okay about raising funds, without knowing the underlying problem was the lack of self-acceptance. To top it off, I began sensing that people were viewing me as just a ‘charity case’ and not as a person.

Inferiority complex!

I came down hard, giving myself no room to relax. I thought I should not slack. Live like a martyr for every penny’s worth. I went back to college, determined to fulfill my childhood dream and give it back to society through my career, but with the wrong premise.

As we discovered oedema building up in my brain from the result of all these lack of self-acceptance, I began to reconsider the meaning of my life and my priorities.

I am finally coming to feel content. When people donate and support me, they don’t always expect me to pay it back. Not that life is a vending machine. Reading Randy Pausch’s book line by line with a magnifying glass and then switching to reading Braille when my eyes get tired, I understood that being inspirational doesn’t mean we do great things for people.

What’s really inspirational is in really living your dreams and your life with contentment. So many of us thought we are content but live life like there is no tomorrow so today must not be wasted.

How could I ever be content if I could not accept today?

Mom and I worked together as we assembled my new desk chair. With dad and his brain trauma, mom and I pretty much do all the physical work at home. I used to be short-tempered and impatient. But today, the success of assembling this simple chair made me so happy, that I gave mom a very big hug, for the very first time