My father showed me how great one man’s love can possibly be

Johnathan holding his little girl's hand through the park

“I will always be there to hold your hand as long as you want me to”.

This picture of my friend, Johnathan Ramayah, made me tear up one morning. Society celebrates the greatness of a mother’s love but far less appreciation is given to a father’s love.

Some segments of society consider a successful father by his ability to provide living and financial security for his wife and children. Once a man cannot meet that expectation due to circumstances beyond his control, he would be viewed as a failure and, to some people, useless.

As a child, I grew up in an illusion created by adults around me who held such an expectation of a man. It created much confusion in me as to whether my father loved me – his one and only child.

I only managed to see pass the illusion in my 23rd year of life, when I didn’t wake up from a major brain surgery immediately as I should but remained semi-conscious for three days in the ICU. In those three days, I experienced my father’s difficulty resulted by a brain haemmorhage he suffered when I was 3 years old. When I came back to Malaysia after that surgery of mine, I recognized my father, my real father, for who he is to me and not what others said he was.

My father was a great man because he took care of me as best as he could despite his limitations. I only wish I knew to appreciate him sooner.

Today, I do not look for a life partner by considering a man’s wealth or ability to provide for me. I have learned my lesson.

I couldn’t do my math

I was thrilled studying a material with diagrams and numbers yesterday, because I could finally understand what I was seeing on the pages. Almost two years ago, I was staring at these same pages and knew what I was seeing, yet I could not digest the information. My brain froze and felt numbed.

My thinking process then went something like, “Twenty times forty equals eighty. Eighty divided by ten equals equals equals ten, no, eighty divided by ten ten ten…”

It was a side effect from my December 2009 surgery. We safely removed a tumor of mine from deep within the brain, at an area called the lateral ventricles. To access the brain without compromising my right field of vision, doctors went through the fibers that connected both hemispheres of my brain, an area called the Corpus Callosum.

After surgery, the Corpus Callosum swelled and needed time to recover. I remember entering our room at the Seton Guest Center in the hospital wanting to ask my mom where my whiteboard was. That was my thought, but how that thought came out was completely different. Instead of saying and acting what I had intended, I stretched out my hand at my mother robotically and uttered, “Whiteboard, give. Whiteboard, give”.

I was lucky my mother did not throw the dishes that she was washing at me.

So, it has taken almost two years for my brain latency to recover. During this period of recovery, I have had to defer my math papers, put away the Texas Instrument and changed my lifestyle because over-stimulation of my brain nauseated me.

After the December 2009 surgery, my personality and consciousness changed drastically. I have become more patient and in control of my emotions. But the most important of all was that, I could finally empathize with my father’s difficulty.

I have misunderstood my father most of my life, just as everyone else in the family have misunderstood him. If it weren’t for side effects from the December 2009 surgery, I would not have experienced what it was like to live in my father’s shoes.

His brain hemorrhage when I was three years old made him a different man. There were damages although he could talk, behave like normal and reason pretty well. His deterioration was so gradual and natural that his loved ones blamed him for the seeming laziness, unwillingness to care and irresponsibility. I grew up hearing these accusations since I was a child until they were ingrained in my mind too.

So, I slowed down for two years after the December 2009 surgery. Many things in my life changed. I am not as physically strong as before, I couldn’t do my math. But I finally understood my father and appreciated him for who he was, the man beneath his limitations, the man I knew a long, long time ago. So long that I almost forgot.

Dad passed away ten months after my December 2009 surgery. We bonded and reconciled during those ten months as I stayed home more than I would have before that surgery.

There are some things that money can’t buy, and that includes understanding my father right before his time was up.

Yes, I slowed down after the December 2009 surgery. But I gained something that money can never buy.

I will never forget this grace from God to my father and I.

Finale

Aunt Ivy's oval jade-bangle

At the market this morning, mom bumped into my cousin who informed her that his mother, my eldest aunt passed away on 9th January, two months after her brother, that’s my father, passed away.

We were not informed. Maybe they needed time to themselves.

After not seeing each other for ten years following their youngest sister, my Aunt Ivy’s demise in April 2001, my eldest aunt finally came to see my father in the ICU on 10th October 2010, which happened to be the day he was weaned off the ventilator. My dad was shocked to see his sister again, his eyes round like almonds, his lips pursed behind the oxygen mask.

She visited dad again on the night of 15th October. Dad passed away on 16th October. His wake was held on 17th and 18th October, his remains cremated on 19th October.

On 9th January 2011, my aunt, too, passed away.

The oval-shaped jade bangle in the photo above belonged to my Aunt Ivy who wore it until she exhaled her last breath. It was removed from her by undertakers. The hospital where she died gave it to my eldest aunt who gave it to me after Aunt Ivy was cremated. Because of it’s small size, I was the only person whose wrists could fit into the bangle.

I wore this bangle through several brain surgeries in 2009. It even appeared with me in Her World magazine. After hearing the news of my eldest aunt’s demise from my mom today, I retrieved the bangle and gripped it tight.

This family with all it’s dramas has somehow strengthened me to be who I am today.

Take charge of your own health and life

During the final week of his stay in the hospital, my father said to me, “I love you, my greatest daughter. Ming Niang, go and make something of yourself”.

I cried everytime I saw him strapped to an enormous contraption called a ventilator, his vulnerable eyes peeped at me from behind the heavy mask.

I actually felt that I didn’t do enough for my father. He should have been given professional mental health support after he survived the brain haemmorhage. But he was not given any, which left him to struggle with failing cognitive abilities all by himself. To make it worse, everyone misunderstood him and critized him as being lazy, uncaring and irresponsible. I regretted not empathizing with his disability earlier. It was until December 2009 when I remained unconscious for 24 hours after a major brain surgery, drifting in and out of semi-consciousness for several more days did I finally experience my father’s helplessness all those years.

After returning from that surgery, I received an award from F&N which came with a huge poster that I hung in the living room. My dad who usually slept throughout the day from lethargy walked out the door and invited random passersby to come have a look at his daughter’s achievement.

I wish that I have taken better care of my dad. I wish I was able to afford his long-term medical treatments. I wish I had the wisdom to do so much earlier on. But I did not. By the time I fully empathized with his difficulty, he had only ten more months to live.

Yet, despite the strugles in our family and relationship, my father still thought I was his greatest daughter. Despite not being able to take care of him, my dad wanted me to go and make something of myself.

In the past nine years since I was diagnosed with NF, I could only campaign to raise funds for my own medical treatments while my father endured his condition by himself as everyone misunderstood him. Yet, at the end of his life, all he wanted was for me to go and make something of myself. Not for me to give or pay him back anything.

The reason I write this is because some of my friends and readers may be suffering with health problems which they have lived with for years. It might have become part of their life to just endure and occassionally lament about why doesn’t anyone understand them. They may not want to seek proper diagnosis because they fear that doing so will hassle their parents and family. But the opposite is true. When you don’t get a proper diagnosis and do not have control over your own life, your parents will indeed feel burdened, burdened by worries for you.

Take my mom for example. She may have to help me carry heavyloads whenever I raise funds. She may have to see me going under the knife time and time again. She may have to accompany me across the Pacific Ocean for medical treatments. She may have the occasional anxiety while waiting for me to emerge from the operation theatre. But I am certain that my mom feels much more at peace today. She is not as neurotic and bitter as she used to be in my childhood and teenage years.

So, don’t think that by tolerating your medical problems when you could have taken initiative to get proper diagnosis and treatment, you are doing your family and parents a favor. You are not. In fact, they feel even more burdened with worries of how you will survive without them.

Another example would be Eddie and his sister, Grace. I met Eddie in 2006 when mom and I went to L.A. for surgery. He said that he wished Grace was as strong as I. But Grace did not tell anyone when she started to lose control of her bodily functions until her employer decided to take her to the doctor. It was discovered that Grace had a brain tumor at one of her ventricles. She underwent surgery to remove the tumor but blood clots kept forming while she was still in the ICU. Doctors re-accessed her brain a couple of times to clear the clots and Grace was never the same person again. Eddie and his other sisters had to persuade their aged mother into agreeing to place Grace in a nursing home when their dad passed away.

So, please take charge of your life and health. If you do not take action to get diagnosed and acquire treatments, no one can help you. You will indeed cause your loved ones trouble by not taking responsibility for your own life.

My dad’s life taught me this

I often remember my dad with nostalgia. This is different from when Aunt Ivy passed away. I was in grief when she left us. But my dad’s life and demise is more surreal to me.

My dad’s mere existence shaped me into who I am. That seems to have been his major contribution to my life, and the most important factor in my formative years. Because of him, I learned to be self-efficacious since a toddler. I learned to regulate my own emotions, I learned to be emotionally prepared for what might happen. I learned to accept when bad things happen and move on quickly to do what I have to do.

My dad didn’t teach me these things in the traditional way. He suffered a brain haemorrhage in my early childhood which left him with cognitive impairment and me to mentally and emotionally fend for myself. My dad fought a very tough battle to live the best he could. With a part of his brain dormant, my dad couldn’t sustain his job. He was a landscape architect. I used to watch him draft waterfalls and landscapes. He even did landscaping for a sultan. But gradually, his work performance deteriorated until he had to defer all his projects to his friends in the industry.

Then, he started sleeping throughout the day seemingly lethargic and apathetic. Memories of my dad in my early childhood were then replaced by what people started to say about him – that he was lazy, dependent, uncaring and irresponsible. Later, some even accused him of being a scoundrel because Aunt Ivy helped us a lot.

I wasn’t old enough to know that the people who called him such have issues within themselves. What they said about him affected me. Although I never truly believed in their words, I was confused. My dad did seem unreasonable and irresponsible. They said he did not love me because he did not exercise his paternal responsibilities. Yet he never laid a finger on me. Something in me felt that he did care. Yet the insults and accusations of other people continued all around.

So I grew up wanting to be anything but the things that people thought my dad was. I don’t want to be lazy, I don’t want to be useless, I don’t want to be dependent. Sadly, this affected the relationship between my father and I that became ambivalent. I didn’t know how to feel towards my dad. Is my dad who I feel he is? Or is he what people said he is?

They said he was ungrateful despite surviving the stroke.

Was that true?

In the last couple of years, some of my friendships led me to reading about the biological causes of Psychopathy and Sociopathy. Although my dad’s behavior did not qualify for the diagnosis of these personality disorders, they did show how a small impairment of the brain can possibly make the person unable to care.

When my dad was hospitalized for the last time, he kept writing to me on my whiteboard, “I love you”. “My greatest daughter”, and their variations. My dad could never express these emotions to me, not until his very last days. It was as if somewhere in him knew that he will soon not have the chance to say them to me anymore.

On the night of October 16th 2010, I paid my father a routine visit in the hospital while mom waited outside. The machine that monitored his pulse kept beeping. I didn’t know why then but it was because his pulse was already so weak that the machine could not trace. When my dad saw me, he held my hand gently without gripping for obvious reasons. His eyes were only a quarter open and even then, I saw mostly whites. He couldn’t turn his head to face me, but his eyes did. My handbag was sliding off my shoulder so I said to him, “Let me put down my bag first”. He let go of my hand, clasped both of his hands together, placed them on his chest and closed his eyes.

I thought that he was tired and wanted to rest.

I didn’t realize that he had been struggling to keep breathing until I came. If only I knew, I would have stayed with him for the next two hours until his heart stopped. But I didn’t know he was dying.

Dad clung onto life for me.

Now that my dad is really not here anymore, I can finally see the purpose of our relationship, the big picture. Beneath what other people thought about him, therein lies my father’s destiny to teach his daughter strength. Our relationship was a test, a life training for me.

I sometimes wished that I had a sibling to share the responsibility of caring for my parents. But there is no guarantee that the other child will also learn to be strong although we grow up in the same family and share the same childhood experiences. I almost learned to be bitter. Thank God for everything else around me, I did not go on to that path.

I am sure those times my dad spent praying before the altar, he was praying for me.

My speeches now includes the story of my father and my growing up years. Firstly, it is because many people have asked why am I so strong. Secondly, because I want to raise awareness about how stroke can cause cognitive impairments and how it affects the victim’s family.

Although I wish every child will grow up strong to face the future, I wish no one will have to go through what I had. If they must, I pray that they will be able to rise above their pre-conditionings and environment.