Blinking in the Grand Canyon

View from the South Rim

A visit to the Grand Canyon in early spring is a reminder of the big picture of life, and that perhaps all our worries are small and we can spend too much time dwelling on them. I contemplated this as I looked out from an elevation of 7,000 feet into the vastness of the Grand Canyon, breathing in the cool spring air, as a light breeze gently blew my hair into my eyes.

We arrived close to sunset, after a long eight-hour drive. We watched as the Grand Canyon transformed itself into a kaleidoscope of colors. The golden reddish light lingered upon the highest plateaus of the canyon as its depths disappeared into the darkness of the night. We were then treated to the darkest of skies and to thousands of the brightest stars.­­

As the next day’s dawn began to brighten the day, we took a drive around the canyon’s south rim. We stopped along the way and walked out onto the various precarious vantage points, all with breathtaking views and sheer drops of thousands of feet into the canyon. At times I was a little concerned that my son’s wheelchair was too close to the edge or that my other two were leaning too casually against the railings, especially since it was quite windy.

The first time I visited the Grand Canyon was over 30 years ago. Nothing had really changed. For a moment, time really had stood still. I remembered sitting on a ledge at a lookout point and I began to search for that exact spot, in the hope of taking me back to that time.

I was reminded of the awe I felt seeing the canyon for the first time and making sense of its creation and existence. As I looked around I saw families, couples, hikers and people from all over the world just sitting and absorbing the view.

We continued along the path to Mohave Point. It was here that we glanced down and saw for the first time, the azure colored Colorado River, meandering far below on the canyon floor.

It was difficult to comprehend the fact that the Colorado River established its course through the canyon at least 17 million years ago and continues to carve and form the canyon.

But it was easy to notice and reflect upon how small we are and our feats somewhat insignificant compared to what the river has been creating.

As I watched the river, I thought about the flow of time. I was here as a teenager, and now years later I am here with my own family. One day it will be my children’s children who will be standing upon this very lookout point.

I thought about the river as a teacher about life, the way it meanders softly along downstream; with ease it flows freely around obstacles in its path; peacefully and patiently, as if just focused on being. The river isn’t dragged down by the hardships of life, it just goes with the flow, on and on, like it has for 17 million years.

Our trip to the Grand Canyon was a short one, but our memories will be forever. We said goodbye to the Grand Canyon by blinking in a certain view and sealing it into our memory.

As I held my daughter’s hand, I shared with her that the river is a good example of how to be in life. After all, we are all creating and carving out our own canyons, our lives. And we are the river that runs through it all.

The Colorado River

Expedition Mt Kinabalu!

Summit of Borneo August 25th, 2012

Welcome to the second annual Expedition Mt Kinabalu! On August 25th 2012, I will be part of a team of 60 international climbers who will scale Mt Kinabalu, summit of Borneo, to raise global awareness and funding for Duchenne muscular dystrophy. Duchenne is a fatal, progressive muscle wasting disease that affects one in 3,500 boys worldwide. It robs boys of their ability to walk, breathe, eat and speak, and eventually takes their lives, often before they reach age 20. It leaves their minds unaffected and full of dreams. This is a personal quest. I will be climbing for my 19-yr-old son Dusty who has Duchenne, and for all the thousands of boys who are faced with the challenges of this disease everyday. All money raised will go directly to funding promising research that will extend lives and find a cure for Duchenne. Please sponsor me by clicking on the link below, and help change the future of all the boys and young men with Duchenne worldwide. With sincere gratitude, Cath Jayasuriya

http://www.active.com/donate/duchenneexpedition2

That Was The Year That Was!

Holiday Greetings & Happy New Year 2012 from Coalition Duchenne! That Was The Year That Was! 2011 has been a year of action for Coalition Duchenne. After its inception in March, Coalition Duchenne, a 501(c)(3) non-profit organization based in Newport Beach, California, held two successful events: Expedition Mt Kinabalu, Summit of Borneo: On September 9th, a team of 35 international climbers from nine different countries scaled Mt. Kinabalu, the 13,455 ft summit of Malaysian Borneo Music Power: On November 11th, six incredible bands featured their music to over 600 people at the Galaxy Concert Theater in Orange County, California. Meeting President Obama The highlight of the year was a trip in June to Washington DC to privately meet with President Barack Obama in the Oval Office. This was my son Dusty's wish through the Make A Wish Foundation. We told the President all about Duchenne and Coalition Duchenne. Michelle Obama said of the President that when it comes to the people he has met, he has a memory like a steel trap. He will never forget a story like Dusty's and that it becomes imprinted on his heart, and he carries it with him every day. Read the story here. Coalition Duchenne lived up to its mission to raise global awareness for Duchenne muscular dystrophy, and raised much needed funds for research to find treatments and a cure. Borrowing from Martin Luther King Jr., We are confronted with the fierce urgency of now. Coalition Duchenne has responded. As the founder of Coalition Duchenne and as a mother of a 19-year-old with Duchenne, there is no time to waste. Even though research has had some major breakthroughs and we are closer than ever before, there is still no cure for Duchenne. At Coalition Duchenne we believe that with more global awareness and with more funding, we will attract more research, treatments and a cure. Now is the time for humanity to come together to save our sons. Coalition Duchenne is about acknowledging and bringing together all the world's Duchenne muscular dystrophy organizations and individuals. But it is more than that. Coalition Duchenne is dedicated to reaching out beyond the Duchenne community and into the world. The world needs to know about Duchenne. Duchenne is a progressive muscle wasting disease that leaves our son's minds unaffected and full of dreams. It is the most common lethal childhood genetic disease. Duchenne affects one in 3,500 boys worldwide.It robs boys of their ability to walk, breathe, eat and speak, and eventually takes their lives, often before they reach age 20. Duchenne affects boys and rarely girls, all over the world, from the USA to Asia, Australia, Europe, India, South America and Africa. It knows no boundaries and does not discriminate between race, culture, socioeconomic status or country. Moving forward, we are stronger if we all come together, as humans, as a force, as a coalition, bringing everyone together. Duchenne is a difficult road and presents many challenges along the way. It steals many things, the ability to walk, to hug, to move, and eventually to breathe. But there is that something that it can never get to, that it can never take, and that is hope. Coalition Duchenne's logo is a lotus flower, designed by my 12-year-old daughter, Gabriella. A lotus grows out of dark muddy waters, and blossoms into a beautiful flower. The lotus symbolizes enlightenment in spite of our circumstance; it symbolizes our awakening and understanding of the oneness of us all. Now is the time for humanity to come together. This year, together we climbed the highest peak of South-East Asia and we brought people together to raise awareness for Duchenne through Music Power. Out of diversity, we are one people, connected through love, kindness, compassion and positive energy. Research Initiatives Coalition Duchenne is evaluating promising initiatives in cardiac and pulmonary research. To name just a few: FDA approved drugs such as Sildenafil, and other PDE5 inhibitors, and Spironolactone are potential adjuncts to established ace inhibitors, such as Lisinopril, and beta blockers, such as Carvidelol, to help maintain and even improve cardiac function; Stem cell research is beginning to offer potentially viable treatments although research has been focused on other patient groups; and, several other novel drugs and proteins are close to an FDA investigational new drug application. Our track record of evaluation and funding is solid. To date, we have raised over $1 million, partly channeling the money through Parent Project Muscular Dystrophy. Independently, we funded the Dusty Brandom Fellowship at the Australian Neuromuscular Research Institute at the University of Western Australia. This helped Dr. Steve Wilton with groundbreaking work on Oligonucleotides (Exon skipping). These nucleic acid polymers are now showing promise in FDA trials. We funded another fellowship with Dr. Andrew Hoey at the University of Queensland working on cardiac research. We have also contributed significant funding to Albuterol (Spencer, UCLA) and small molecules (PPMD's Project Catalyst). We evaluated the VECTTOR system advocated by Dr. Rhodes in Texas and provided updates to the Duchenne community. Dusty Brandom has also been a long term participant in the Ataluren trial by PTC Therapeutics. We have worked hard to support boys with Duchenne. We share their achievements with the world through the Our Sons page on our website and advocate for their issues and care. In one example, we worked with a young man in Malaysia struggling with pulmonary issues and hospitalized with pneumonia. We helped his family source a Cough Assist machine and showed him how to use it on Skype. Last year he graduated with a law degree from the University of Malaysia. We are closely following the latest research initiatives. Web sites such as clinicaltrial.gov are excellent but broad. Treat NMD has synthesized the latest research with links to the specific clinicaltrial.gov number and can be found here. Academic Papers relevant to the Duchenne community published in 2010 and 2011 can be found here. Coalition Duchenne will be announcing its next investment in Duchenne research early in 2012. But there is more to do. We continue to respond to the call to action. Again, with more awareness, we will attract more funding, and treatments and a cure for this disease. This gives new hope and optimism for those living with Duchenne. All money raised in 2011 by Coalition Duchenne will fund cardiac and pulmonary initiatives that will help our sons live longer lives. All of you are helping to raise awareness and funding to find treatments and a cure for Duchenne. All of us here at Coalition Duchenne hope that the entire holiday season and New Year will be filled with joy for you and your family. Please consider making a Christmas or New Year donation to Coalition Duchenne. Thank you for your support, your kindness and your compassion. With sincere gratitude,

What's up with GERD?

American Idol winner Lee Dewyze
visiting Dusty in intensive care

What’s up with GERD? Hydrochloric acid. That’s what’s up. What makes GERD so nauseating is the hydrochloric acid that leaks up from the stomach and into the esophagus, due to a problem with the upper stomach sphincter muscle. What makes it worse is the accompanying nauseating mucus that is produced in the esophagus as it protects its own surface against the stomach’s acids.

This was all new to me, and especially not something I had anticipated with regards to Duchenne muscular dystrophy. GERD was certainly not something on the Duchenne radar of things to worry about. My son Dusty, who is 19 had been complaining of difficulty swallowing, and had a feeling of food being “stuck” in his throat. We were told these were common symptoms of acid reflux and were given a proton pump inhibitor, which is a small pill taken daily that suppresses acid production in the stomach. That was a year ago, and things didn’t improve. We tried to control the types of food, giving him softer or easy to swallow bland foods. But all along, Dusty was eating less, and continued having a sore throat in spite of what or when he ate. What we realized was that all along, food wasn’t the problem; it was his throat, reacting to the acid that was continually being forced up from his stomach.

Meanwhile, the decline in cardiac and pulmonary functioning steadily continued. After all, Dusty is an older boy with Duchenne and these are the expected issues to watch for. Dusty is on the recommended heart medications, assistive breathing devices, and other standard of care treatments.

In the last month we have had to take Dusty to the ER on three occasions, each time dealing with tachycardia (rapid heartbeat), nausea and difficulty breathing. After a total of 26 hours spent in ER, and four nights in hospital, three of them in cardiac intensive care, we stabilized the heart, stabilized his pulmonary and thought we were home free. But there was something else. Dusty just didn’t feel well. He still had nausea, and an increase in mucus that doctors were thinking was a pulmonary issue. But no. That wasn’t the case.

That’s when I heard about GERD.

What is GERD? And why is it happening?

GERD is gastroesophageal reflux disease; GORD, gastrooesophageal reflux disease; gastric reflux disease, or acid reflux disease. It is a chronic symptom of mucosal damage (mucosa line the interior of the esophagus) caused by stomach acid coming up from the stomach and into the esophagus.

When the muscle valve in the esophagus, called the lower esophageal sphincter loosens or weakens, acid splashes up from the stomach. Normally, this valve should close tightly after eating to prevent acid from escaping.

Part of the diaphragm forms an outer sphincter. In Duchenne, when the diaphragm is weaker, and because the diaphragm muscle is integral in functioning of the sphincter, the valve is permanently weakened or damaged and doesn’t work as well.

Barrett’s esophagus is often diagnosed in those who have had long term GERD.  It can be concerning because it increases the risk of esophageal cancer.

I have also read about another kind of acid reflux, which causes respiratory and laryngeal signs and symptoms, and is called laryngopharyngeal reflux (LPR) or extraesophageal reflux disease (EERD).

How do you treat GERD?

The medications used include proton pump inhibitors, which prevent acid reflux over a period of time. These medications decrease the production of stomach acids. Some proton pump inhibitors can help to heal the esophageal lining, which may have become damaged from persistent acid reflux. Other treatments include surgery that helps strengthen the sphincter.

For now, the doctors have Dusty on double the dose of the proton pump inhibitor. In the last month Dusty has been unable to eat solid food. Fortunately he is able to tolerate and supplement his diet with nutritional drinks. In a few weeks there will be a re assessment of any change or improvement to GERD.

Going back to our visits to the ER prior to the GERD diversion, the swing of emotions was intense. Having cardiac issues is serious enough, and watching Dusty’s heart maintain at 200 beats a minute for two hours was frightening. His body literally vibrated in time to the beats. In the ER, it was difficult watching him struggle with nausea, difficulty breathing and feeling unwell. I made sure I kept my mind present with the task at hand and stopped myself drifting into the “what ifs” and the fact that the Duchenne community had recently lost many young boys/men to Duchenne. My mind struggled with this as I helped Dusty’s frail body sit up to cough.

The word got around fast that Dusty was in hospital, mainly due to a facebook post I had made while waiting in the ER. The response was tremendous. Literally hundreds of messages came pouring through from all over the world. I read through the flurry of messages as each came through on my cell phone, and read each one out to Dusty. I was moved and touched by the outpouring of thoughts and prayers and messages of support, some from people I hardly knew.  The messages were comforting. I felt the arms of humanity around me and the oneness of us all.

People have been inspired by the journey of Duchenne that so many of us are on. Our stories are told again and again, inspiring stories of our young sons and their families who know what it means to literally make the best of everyday. Through this journey I have met the most kind and caring people. Living with Duchenne can bring out the best in people whether they are on the journey themselves or not.

Yes, it is a harsh disease. Our hearts break together. In this way the Duchenne community is close. Somewhere in between the ups and downs of the cruel reality of this disease, we find life’s rainbow, the subtle, unexpected beauty that appears when we are not looking for it.

Dusty is still unwell, and he will need to wait out the proton pump inhibitor to work. It can take weeks. For now, he prefers to sit in a dim lit room to help with his nausea, close to an assistive cough-machine that helps to clear the mucus caused by the acid in the esophagus. For the moment we won’t be going on our daily walks, or flying his remote-control planes. Instead we will hang quietly and patiently indoors for this to pass. When I look into his blue eyes, my mind stops racing and worrying, and I feel a sense of calmness and ease.  It is moments like these, and there are many, when all is good.

Please check out http://coalitionduchenne.org

Expedition Mt Kinabalu

Climbing Mt Kinabalu, Summit of Borneo

http://www.active.com/donate/duchenneexpedition

Expedition Mt Kinabalu

Climbing for a Cure

Welcome to Expedition Mt Kinabalu! On September 9th, I will be part of a team of 30 international climbers who will scale Mt Kinabalu, summit of Borneo, to raise global awareness and funding for Duchenne muscular dystrophy. Duchenne is a fatal, progressive muscle wasting disease that affects one in 3,500 boys worldwide. It robs boys of their ability to walk, breathe, eat and speak, and eventually takes their lives, often before they reach age 20. It leaves their minds unaffected and full of dreams. This is a personal quest. I will be climbing for my 18-yr-old son Dusty who has Duchenne, and for all the thousands of boys who are faced with the challenges of this disease everyday. All money raised will go directly to funding promising research that will extend lives and find a cure for Duchenne. Please sponsor me by clicking on the link below, and help change the future of all the boys with Duchenne. http://www.active.com/donate/duchenneexpedition With sincere gratitude, Cath Jayasuriya

Meeting President Barack Obama

My son with President Barack Obama in the Oval Office

Three years ago, the Make-A-Wish foundation, an organization that grants wishes for terminally ill children, came to our home to ask our then 15 year-old son who has Duchenne muscular dystrophy, what his most special wish was. It was just after the exciting campaign and election of President Barack Obama.

My son’s wish was to meet the newly elected president in the White House. We were told that it may take a few years, and they suggested that if he didn’t want to wait that long, he could request a different wish at any time. My son said that he would rather wait for the wish to come true.

Now, three years later, out of the blue I got a call advising me that my son’s (now age 18) wish had come through. I was told that in two weeks my family and I were to be flown to Washington DC, to the White House, to meet the President!

There was much confidentiality surrounding the visit, and although I was permitted to share the news with close friends and family, I was asked not to put anything out publicly on social networks such as Facebook. I immediately called my parents in Malaysia to tell them the exciting news. They were thrilled with the fact that their grandson had an appointment with the President. The news spread, and before we knew it friends and family from all over the world were sharing our excitement.

The timing was perfect. My son’s health was stable.

After selecting gifts and items we wanted signed by the president, there were many emails back and forth requesting personal information about my son for the president to know such as his interests and hobbies. We put the information together in a personal email for the president to read. 

The days went by quickly, and before we knew it we were en route to Washington DC. Once there we were told that the very next day we were expected at the White House.

I reminded my children to be present and mindful of everything that was to happen that day, and they also reminded me. Throughout the hustle and bustle of getting organized and ready, my mind was calm and open.

On the day of the visit, as we drove along the streets of Washington DC, I caught glimpses of the Capitol and the Washington Monument through the trees and the sparkling sunlight as I looked out through the window of our vehicle. I thought of the many notable people who had shared this route on their way to the White House.

We arrived at the East Wing entrance. Security was tight but they were expecting us, and the gates opened swiftly as our convoy was waved on through.

I watched my son drive his wheelchair out of the disabled van, with his contagious smile and lively blue eyes reflecting a clear blue sky. He looked stylish with his casual blond hair, his carefully selected new pressed shirt and dark blue pants, blue tie and new black shoes. He was so vibrant and I was in awe of him.

The secret service was there to greet us, and escorted us through the East Wing entrance of the White House.

Our private tour took us though grand rooms and corridors so full of history. Every now and again we saw the view outside from within, a view few people see.  Formal portraits of past presidents and first ladies flanked the corridors, methodically placed amongst the casual family photographs of the past first families. Pondering over some of the portraits I recalled the events of that time. As I started remembering historical facts, my son reminded me to be present.

The carefree mood of the East Wing, where we met Bo the President’s dog and ventured out into the beautifully manicured Jacqueline Kennedy Garden, where my son rode in the president’s private elevator and then relaxed in the President’s private movie theatre, suddenly changed as we approached the West Wing. The secret service started to appear and I knew then that the moment had come. The moment we had all been waiting for.

We waited for a few minutes before we were escorted along the West Wing corridor past the Rose Garden. Here we entered through the West Wing doors and were asked to leave our cameras and cell phones on a table. We were advised to wait a few minutes for the president to wrap up a meeting. Within the next few minutes it was quite a surprise to see Hilary Clinton appear from a side door. As we greeted her, it was then that I realized we were going to meet the president in the Oval office. It was our turn next. At that moment I felt the adrenaline kick in and I was trembling both with excitement and nervousness.

Suddenly, through a corridor before us, a double door opened releasing the mid afternoon sunlight of the Oval Office.  A tall man stood before us with the light streaming behind him. It was the President.

His familiar voice called out, “Hi Dusty. Come on in. I’ve heard all about you!”

President Obama walked towards us in his relaxed fashion. He reached out and placed his hand gently on my son’s hand, the other on his shoulder. The President humbly thanked my son for coming to visit.

The President showed us into the Oval Office and closed the door. For the next 20 minutes we had a dynamic conversation ranging from his interest and concern for the seriousness of my son’s condition, to the outbursts of laughter when he attempted to play the sompotom, a small traditional musical instrument we brought him from Borneo.

When he asked us what we had planned for the summer, my son proudly told him about our Expedition Mt Kinabalu climb to raise global awareness for Duchenne. The President jokingly said he would love to come and that he wanted to hear all about it. He shared with us his passion for traveling to exotic places. He was interested in my cultural heritage as he broused through a book we gave him about Borneo. He asked how my parents had met as he stopped to look closely at an image of Mt Kinabalu. He had questions for all of us, as we did for him, and with great care and deliberation, he always brought it back to being about my son.

The President was genuine, warm, friendly and compassionate. It was an incredible experience to be in the presence of an individual who has inspired not just my son and me, but also the world.

As I took in the moment, I noticed the few selected pictures on the wall of the Oval office, the grandfather clock in the corner, the secret door that had been painted to look like part of the wall, the old style telephones on the desk and the carved eagle on the ceiling. I smiled as I glanced at the assortment of happy family pictures on a small table in front of the window. So much history had happened within these walls. As the chief white house photographer continued clicking away, I realized that we too were part of its history.

I thought of the many influential world leaders who had met here, the discussions and the decisions that impacted the world. I looked over at the President deeply engaged in a conversation with my son. It was a moment I will always remember.

I was able to personally thank the President for being a voice of hope and inspiration to me. As we said our goodbyes, the President commended my son on his hard work, and wished us the very best of luck for the climb. He showered my three children with gifts. For my son, it wasn’t the White House M&M’s, or the specially designed box of caramels or the signed engraved coins that he wanted to hold onto, but it was a miniature copy of the US Constitution that at the last minute, the President took from a different drawer, signed and placed in his hand.

After a long goodbye, we walked out of the Oval Office. I glanced behind and smiled once more at the President. He winked back.

I know that this September 9th, as I climb Mt Kinabalu for my son and for all those with Duchenne, I will reflect on my visit, and on some of the words from the President’s past speeches. The fact is we are all one people, we can repair this world, and there is nothing false about hope. Although the battle ahead may be long...Yes We Can!

Please check out my May blog about Preparing to Meet The President.

Climbing Mt Kinabalu, Summit of Borneo

http://www.active.com/donate/duchenneexpedition

Expedition Mt Kinabalu

Climbing for a Cure

Welcome to Expedition Mt Kinabalu! On September 9th, I will be part of a team of 30 international climbers who will scale Mt Kinabalu, summit of Borneo, to raise global awareness and funding for Duchenne muscular dystrophy. Duchenne is a fatal, progressive muscle wasting disease that affects one in 3,500 boys worldwide. It robs boys of their ability to walk, breathe, eat and speak, and eventually takes their lives, often before they reach age 20. It leaves their minds unaffected and full of dreams. This is a personal quest. I will be climbing for my 18-yr-old son Dusty who has Duchenne, and for all the thousands of boys who are faced with the challenges of this disease everyday. All money raised will go directly to funding promising research that will extend lives and find a cure for Duchenne. Please sponsor me by clicking on the link below, and help change the future of all the boys with Duchenne. http://www.active.com/donate/duchenneexpedition With sincere gratitude, Cath Jayasuriya

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.

Learning from Ants

It is not that our circumstances define who we are but it is rather about how we define our circumstances.

When ants are presented with an obstacle, such as a clump of soil or a rock, they will move around it, climb over and even under it. What they don’t do is give up.

A year ago I was traveling in Costa Rica for a week. It is a tropical paradise, not unlike my home of Borneo. Being on the same line of latitude as Borneo at times I felt I was home, from the short bursts of rain showers throughout the day to the warm comforting rays of the sun, caressing my body as I walked along the beaches.

Costa Rica is vibrantly rich, with its abundant flowers and trees, unique wild life, inviting waters and happy people. While the country has only about 0.25 percent of the of the world’s landmass, it contains five percent of the world’s biodiversity. 

I spent most of my time on the west coast, in Costa Rica’s smallest national park.  One morning, after a walk along the beach, I took the undulating path back through the rainforest to the road, a 15-minute stroll. As I gazed up at the trees listening to the alarming sounds of the howler monkeys, and hoping to see one, something on a tree branch caught my attention. In Costa Rica there is an interesting family of ants called the leaf cutter ants. And there they were, hundreds of large ants carrying even larger pieces of cut leaves, in a frenzied parade along the tree branches. I stopped to follow their path with my eyes, as they descended almost military-like, marching straight down the huge tree trunks and along the ground. I had not seen or heard about leaf cutter ants before, so I was quite intrigued. I started to follow them for several minutes. Eventually, they started to disappear into a hole in the ground, their home, where the leaves are chewed but not eaten, and stored for food.

As I crouched down observing the ants, I noticed a small stream right in their path. What amazed me was that they had found a way to get across, a small branch provided a bridge. These ants were never going to quit. When the ants came across an obstacle, they would go left or right of it, go over or under, or even move it. The ants confronted their obstacles. They were just ants. They were not defined by their struggle. They just got on with it.

I stood up and started back on the path. It is not that the path is always easy. It won’t be. Life won’t always be easy. Our circumstances may present us with difficulties, not just obstacles in our way but sometimes mountains. But that is not what defines us. The way we see our obstacles reveal who we are. Instead of seeing obstacles as difficult or negative, we can see them as opportunities for growth, for love, for compassion. This defines who we are. Mountains can potentially stop us. If we can’t go around them or move them, we may have to climb them.