Preparing To Meet The President

Senator Obama in 2008

It has been an extraordinary 10 days, 10 days I wish would never end. Everything went right, everything fell into place. My son’s wish to meet the President through the Make-A-Wish Foundation had come through. It seemed so unreal the fact that next week, we were headed to the White House for a private meeting with President Barack Obama.

My busy week began getting in the way of the fleeting moments I had day dreaming about meeting the President, dreaming of being in his presence and the conversation I was going to have with him. With only three days until we were to leave, I began to realize that I had to leave my to-do list behind, and to really be in the present moment. After all, it was for only three more days that I could say, “I have an appointment with the President.”

I wanted the days to go slowly, to delay the gratification of meeting someone who has truly had an impact on my life, with his inspiring words of hope, with his powerful speeches, and the way he conducts himself during interviews, his non reactive answers, his calmness, his friendliness, his intelligence.

How does one prepare to meet President Barack Obama?

I began looking over the piles of transcripts of his speeches I had kept from his presidency campaign three years ago, marked up by a scattering of my yellow highlighter across the pages. It was his message of hope, hope in the face of difficulty, hope in the face of adversity, choosing hope over fear, that inspired me the most. It was hope he had given me as a mother on my journey with my son suffering from Duchenne.

I identified with his message, ours being the generation that stood for change, compassion for each other, marching straight forward with courage and purpose. It was a powerful message.

I went up to the bookstore with my daughter to buy a new copy of Dreams of My Father, that I would ask him to sign. When I read his book sometime ago, I saw parallels with my own life. Like myself, Obama had a mixed heritage, and had also experienced living in different countries. Whilst he spent his childhood in Indonesia,  I spent mine in neighboring Malaysia, just across the water. Obama also had a pet ape when he was a child and so did I.

Like myself, when he was younger, Obama also experienced confusion in identifying with a race or culture, which is often the case with children from multi-racial parents.

I pondered over questions I would ask him, and advice I would seek.

As I self reflected, I thought about my three children, the impact this visit will have on their lives. I thought about my son, whose wish it was. I thought about the moment the President would reach out to shake my son’s hand, only to realize that my son is too weak to lift it. At that moment I know there will be a connection. We will connect on a personal level with the President, as a parent, as a father, as a brother.

This is a private visit but in a way it is also official.  My son is meeting the President, not only as a fun 18-year-old who loves science and computers, but also as an ambassador for Duchenne.

The President will know all about the seriousness and the devastation of Duchenne, and this may make a difference. 

Mount Kinabalu: A Silent Witness

I was born to a Malaysian father and an English mother. More specifically, my father is part Sri Lankan and part Kadazan. The Kadazans are the largest group of indigenous people of Sabah, in Malaysian North Borneo. My parents met when my father won a scholarship to study law in England in the 1950’s.

I am fortunate to have lived my childhood in Sabah. I was raised in the then small town of Kota Kinabalu. In the 1960’s, KK and its surrounding area were largely undeveloped and I spent my childhood running around on the beaches, the islands and hills, and exploring the rivers and untouched rainforests. It was an idyllic setting. I was  growing up and living in an adventurous and exotic place. To me it was paradise.

As a child, what fascinated me the most was Mount Kinabalu, a tower of granite that rises majestically 13,455 ft above the surrounding countryside. Mount Kinabalu has been a silent reminder of time passing. The mountain was like a loyal friend in my life, constant and unchanging.  It was witness to all that was happening.

Mount Kinabalu is an isolated batholith, created 15 million years ago. It boasts being the highest mountain between the Himalayas and Irian Jaya, Indonesia. Mount. Kinabalu has attracted the attention of botanists since 1894 because of its diverse flora.

The word Kinabalu comes from the Kadazan word Aki Nabalu, “revered place of the dead”. The mountain is sacred to the Kadazans. They believe that spirits of their ancestors inhabit the top of the mountain. Many Kadazans still live in small villages or kampongs on the flanks of Mount Kinabalu.

In my childhood days, it was a slow nine-hour drive to the mountain and the park headquarters, along a winding, treacherous dirt road that created havoc for vehicles during the rainy season. I remember one time that our four-wheel drive had to be towed up a slippery, muddy hill by a steamroller. Today it is a fast hour and a half drive.

At age 11, I was sent to boarding school in the West. Over the years I would return for holidays, and KK changed dramatically. The rainforests began to vanish, the dirt roads were replaced by modern roads, the clear flowing rivers silted up as development made way for modern buildings, more roads and the arrival of tourism.

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Not only did I stand in the worlds of East and West but also those of old and new. Mount Kinabalu was a witness to all these changes. On each return I contemplated the magnificence of the mountain, strong and undefeated. And I decided that I too would stand strong and undefeated.

No matter where I was, whether I was out on my favorite island Mamutik, lying on my thinking rock, surrounded by tranquil waters, or watching from my home, seeing the dark rain clouds clear and unveil the mountain after a raucous tropical storm, it was impossible to escape Mount Kinabalu’s magnificent presence.

Mount Kinabalu became a symbol for my life. The mountain watched over as the years passed. Like an anchor, the mountain reminded me where I was from and kept on drawing me back, guiding me through some difficult years while I was away from home. Every time I left to go back to boarding school, I would look at the mountain one last time and blink it into my memory. Mount Kinabalu stood for wisdom. It spoke to me of strength and endurance. Throughout life’s ups and downs the mountain remained the same, and so did a certain part of me. It reminded me that despite the changes that life brings, there are fundamental things that always stay the same.

Although I have lived in many countries, I still call Sabah home. Despite the changes, when I visit I can still feel the old KK that I knew as a child. It is the remnants of old buildings and roads that conjure up memories of a much simpler life.

In a few months, I’m coming home to Sabah with my 18-year-old son, to lead an international expedition to climb Mount Kinabalu. It is a personal quest.

I will be climbing to raise global awareness for a little known disease called Duchenne muscular dystrophy. It happens to be the most common devastating genetic childhood disease and affects 1 in 3,500 boys worldwide. Boys and young men with Duchenne, face progressive muscle wasting that robs them of their ability to walk, breathe, eat and speak and eventually takes their lives often before they reach the age of 20. It leaves their minds unaffected and full of dreams. Duchenne occurs across all races, cultures and countries.

My son will not be joining me on this climb. Just after dawn before the morning clouds hide Mount Kinabalu behind a heavy cloak of mist, my son will watch from his wheelchair, as 30 climbers from around the world take on the slopes of Mount Kinabalu, to climb in honor of him and all boys and young men who suffer from Duchenne.