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. 

My Father and My Son

My father turns 85 this year. Every year he, (with my mother), makes the long plane trip from Malaysia to California, to spend a fun-filled Christmas and New Year with us. It had been six weeks ago that we anticipated his arrival, thinking of all the great things we were going to do, and the great things we were going to ask him.

During the past six weeks, my father was once again absorbed into the world of Duchenne, as he watched with interest, fully engaged, the goings on in the home, particularly between his three grandchildren, the way they interact, and the love and devotion that is evident between them. My father is not surprised by the absence of sibling rivalry or jealousy. It just does not exist and never has between them. Instead, he is witness to the extraordinary level of acceptance, patience and compassion the two younger grandchildren have for their brother Dusty.

Some evenings my father would sit by Dusty and massage and stretch out the tendons on his fragile, stiff hands. Other times, he would try and comprehend the complex orthotic new seating system that my son has which helps him sit comfortably whilst accommodating a contorted scoliosis.

But this evening was different. It was the one thing we had talked about doing and hadn’t. We had an hour before my father was to leave for the airport. The tripod was set up and the video camera attached. We announced to my father our request to interview him.

As I sat behind the camera, I asked my father if he could share with us something about his life at the ages of 11, 16 and 18, the ages of his grandchildren.

We were suddenly transported into the jungles of North Borneo during the late 1930’s and early 1940’s. My father fondly speaks of a blissful childhood before the war was declared. My father was 15 at the beginning of the Japanese Occupation, and as a result of the war, the schools were closed.  My father started helping out at the timber camp which his father managed, and where his family stayed. He remembers hunting for deer and wild boar in the virgin rainforest.

My father tells of the day when two Japanese soldiers came to the timber camp requesting of his father some help with a possible recruitment. It would be the last time he would see his father. It was a trick played by the Japanese and instead, his father was imprisoned, falsely believed to be a spy for the British.

During that time, after relocating his mother, brothers and sisters from Sandakan to Jesselton, (300 miles away by boat), my father became a trader, walking from town to town bartering rice, bananas, salt and tobacco. There was no road, so he would walk along the railway track with his goods, from Limbanak to Beaufort, 60 miles away and an 18 hour walk.  One time he remembers coming across a derailed train. There were many casualties. He remembers frantically looking for his mother, walking through the carriages, thinking she was on the train. Luckily she wasn’t.

It was during that time that the allied forces conducted missions to end the war. My father was 19 when he was recruited as an interpreter for the Australian 2/28^th Battalion, part of the 9^th Division, who came to liberate North Borneo. He said that they gave him a uniform, and he gestured to his head as he remembers wearing the characteristic wide brimmed slouch hat with a chinstrap.

As well as digging trenches, my father was also armed. He recalls his friend Snowy, a young Australian who was shot and killed. Being all around the same age, he had formed a bond with the men. My father said there was no time to contemplate death, and they had to bury the dead and get on with the task at hand.

Dusty had started to engage my father in the questions. He was in admiration of his grandfather. His grandfather had not only dodged bullets, but bombs too. He saw his grandfather as a deeply caring man, who helped his family as much as he could, even carrying one of his older sisters half a mile to the trenches, daily, during the bombings. Suddenly, the special bond my father had with his siblings was understood in a different light.

As I listened to and watched the conversation between them, I saw how they were both in awe of each other. Something stuck me as similar. Despite their different ages and circumstances, and despite different battles, Dusty with the challenges of Duchenne and my father with his own challenges with various ailments that cause him pain, there was something the same. It was resilience of the human spirit.  It was courage.  Both have the same determination, the same strength and resolve.  Neither complains of their suffering. There is a peace, that despite what my father endured, and what my son endures, they are men of character.

It was suddenly time for my father to leave, for his long plane trip back to Malaysia. It was a moment to remember. I stood watching my father hug his grandson goodbye in the darkness.

And there I was, in the presence of the two most brave and courageous men I know, my father and my son.

Another Brick in The Wall

Within seconds of being led to our seats, the stadium erupted into cheers as Pink Floyd bassist Roger Waters walked onto the stage. As I found my seat in the first row, the loud cracking sounds of fireworks rocked the stage from side to side, and the heat and intense brightness forced me to shield my face with my hands. It looked like the stage had exploded. The legendary rock star took center stage and raised both arms in the air and the crowd again burst into cheers and screams. It was an incredible feeling to be part of this energy.

The lights dimmed as Waters was handed his bass guitar. Suddenly, from the gigantic speakers, the ominous sound of helicopters emerged, their deafening rotor blades vibrating through the crowd, so realistic, as if hovering right above us, casting bright, menacing searchlights upon the audience.  In the background a telephone started ringing, and ringing, hopelessly. The crowd roared as the familiar guitar rift began, and became the opening song for the night, their most famous, Another Brick in The Wall.

Naturally, I went back in time to when I was 16 years old when the song was first released.  As children appeared on the stage for the chorus, I found myself, fist clenched and held high, singing as loudly as I could:

We don’t need no education,

We don’t need no thought control,

No dark sarcasm in the classroom,

Teacher, leave them kids alone…

Of course, the song took me back to some of my dark and desperate boarding school years in England, from the ages of 11 to 17 years old.  Back then the song was like an anthem to me. I was attending a boarding school that was void of anything that was love and kindness. I was 7,500 miles away from my home and family in Malaysia. In those days, we didn’t have the luxury of international calls. I went for months without speaking to my parents and family, and often wondered if they were all still alive. I used to wait desperately for letters to come in the mail from my mother.  My father rarely wrote, just the odd postcard from his business trips. The telephone ringing reminded me of the deep anguish that I felt, thinking that even if I could call home, what if no one answered? It was uncanny how close those memories were still to me at that moment.

The show had started with the band in full view and with each song a wall of cardboard bricks was gradually being built between the band and the audience, allowing only a few gaps for the crowd to see through. By the second half of the show a complete wall stood, 40 feet high, separating the audience from the band performing.

I attended a convent in the English countryside that was run by Canadian catholic nuns. As I sang the words I remembered how harsh and uncaring the teaching nuns were to us. I was reminded of the unwelcoming, depressing conditions of the boarding house, which we would come back to after a day of school, and the coldness of the nuns who ran it. The nuns were trusted to act as our surrogate parents, our mentors, supposed to be responsible to care for us with love, compassion, encouragement and kindness. Instead, a dark and vacant side of human nature was revealed, where our essential worth as children was undermined and damaged. The way we were all treated and the injustices imposed upon us forced me into being rebellious and antiestablishment during my youth.

Waters was against the injustices that he experienced in boarding school himself, which was formal, controlling and rigid. It was a system that forced kids to loose their individuality and to conform. Another Brick in The Wall became a symbolic song against power over an individual, whether it be education, government or religion.

Waters originally thought up the concept of building a wall across the stage to express the feelings of alienation he felt from the audience. Eventually, the wall not only symbolized the separation of the band from the audience but also separation between east and west, rich and poor, black and white, powerful and weak.

To me, the bricks in the wall are like obstacles. They mount up and become walls that separate us from one another. My experiences collected from boarding school have molded me into who I am today, and especially the kind of mother I wanted to be for my children. I am to my children what was missing from my formative years.

A kaleidoscope of colors and fast images were projected onto the wall as the band, who had temporarily reassembled in front of it, quickly cleared the stage. It was toward the middle of the second half when security asked all of us in the front row to stand back.  Waters, standing on a raised platform, took on the persona of a fascist dictator performing at concerts similar to neo-Nazi rallies, and ordered and aroused the crowd as everyone chanted:

Tear down the wall,

Tear down the wall,

Tear down the wall...

The wall, drenched in colors of red and orange, began crumbling from the top, accompanied by sounds of explosions, and dramatically, the whole wall fell to the ground with pieces of cardboard strewn about like wreckage all over the stage and floor. Stage handlers who were shielding the first row from being hit quickly maneuvered the pieces to the sides of the stage. The tearing down of the wall felt historical.

Waters came out onto the stage for the last time, a personable and softly spoken, gentle man, choosing his words carefully and meaningfully, he thanked his fans, and talked about his journey and how he had changed over the last 30 years. I reflected too, upon my own journey and how I have changed.

I reflected on how I battled through all the bricks in my own wall, particularly the emotional trauma of my boarding school years. Having those days now safely behind me, I have stumbled upon my most challenging of all obstacles, that being the diagnosis of my own child with Duchenne muscular dystrophy. I share the same hope for my son that Waters had that evening, as he spoke about the oneness of people, and the need for us all to break down the walls that differentiate and separate.

As the charged crowd stood clapping, again the stadium erupted into cheers as Pink Floyd bassist Roger Waters walked off the stage, ending his last performance ever in the United States. 

Boy With The Blue Guitar

November 2002

(I wrote this song a few years ago when my son Dusty could still play the guitar. Today, just holding a spoon to feed himself is heavy for him).

I can hold a thousand grains of sand inside my hand

Why are all my crazy thoughts so hard to understand

I would walk ten thousand miles in the pouring rain

Just to see you smiling once again

Chorus

It’s funny how the real things are always about love

The answers are within ourselves, not in the stars above

Just ask the boy with the blue guitar

Just ask the boy with the blues guitar

I can see a thousand stars when you’re lying by my side

Nothing really matters here when there’s nothing left to hide

Confused by all those city streets reaching out to escape the haze

Melancholy surrenders to the sunset’s fiery blaze

Chorus

It’s funny how the real things are always about love

The answers are within ourselves, not in the stars above

Just ask the boy with the blue guitar

Just ask the boy with the blues guitar

(Interlude)

I can hear a thousand waves inside the smallest shell

When you’re mind is full of dreams there are only dreams to tell

I find myself at crossroads weary and dismayed

It is in my uncertainty that you make certainty the way

Chorus 

It’s funny how the real things are always about love

The answers are within ourselves, not in the stars above

Just ask the boy with the blue guitar

Just ask the boy with the blues guitar

November 2010

A Doctor's Visit

Recently I was in my doctor’s office for my annual check up. I sat patiently in the waiting-room looking around at the pictures of his family positioned in large frames across the walls, and noticing how over the years his family of five children has grown to include husbands, wives and grandchildren. I was then called into another smaller room, where I waited for a few moments before the doctor knocked on the door and walked in. He greeted me warmly with a handshake and a smile, and touched my shoulder lightly as he sat down opposite me.

Excitedly, I told the doctor that my first-born was going to be 18 in a few weeks. We reflected on how quickly the time had passed as we proceeded to compress the events of the past years into a matter of minutes.

He was my doctor throughout my three pregnancies. He was a lucky find, a kind and softly spoken man with a calm and peaceful nature. I was just six weeks pregnant when I walked into his office those 18 years ago.

Being pregnant and my journey into motherhood, was one of the most fulfilling and rewarding experiences of my life. I couldn’t wait for the routine doctor visits to hear how much my baby was growing, and as the visits became more frequent, the doctor became more of a mentor to me.

I knew I was in good hands. He was able to ease all of my concerns and worries as the due date drew nearer. I was still completing my master’s degree at the time, and was actually preparing to go to an evening class the day the baby was born. It was 3:00 p.m. when labor began. We got to the hospital at about 5:00 p.m. The doctor showed up, and the team was complete. Just two hours later, at 6:51 p.m., my son was born.

As we continued to talk about my health and life, the doctor asked how my son was doing.  My eyes filled with tears as I spoke about the progression of his Duchenne muscular dystrophy since I last saw him a year ago. In his kind and soft way, he again eased my concerns and worries. He continued being present to what I was saying.

The doctor really has been part of this Duchenne journey. Not only did he bring my son safely into this world, but he has looked after my health throughout all my pregnancies and follow up visits over the last 18 years. In this way he has been more than just my doctor but also a spiritual teacher and friend.

Pregnancies and babies and motherhood are life-changing events, and to come back every year to the same doctor to discuss and ponder these events is rewarding. Life goes fast, and these doctor visits have allowed me to stop and reflect and share with someone who is genuinely interested.  After all, I put all my trust and faith in him during that delivery.

Most of all he understands. He understands the emotional investment we have in our children. As a doctor, he plays a major role in bringing babies into the world, present to the happiness and joy, and also to the sadness and devastation. The delivery experience can be as hectic and complicated as it is calm and peaceful.

He gathered his papers as we neared the end of our appointment. I noticed he was much grayer than last year, and nearly bald, but still the kind and calm man he always was. As he stood up and shook my hand, he looked me knowingly in the eye and smiled just like he did the very moment he handed me my perfect son, seconds after he delivered him, 18 years ago.

The Dark Cloud of Duchenne

I once read that life isn’t about waiting for the storm to pass but learning how to dance in the rain.

The diagnosis of Duchenne muscular dystrophy felt like a sharp sword that stabbed and shattered my world.

After that moment, a dark cloud hovered above my head, and would never leave. Every time I looked up, there it was, reminding me of the perils that lay before me.  It was a frightening time, to think that my perfect, sweet child of six who I loved with all my heart, was going to progressively get weaker, until he could no longer walk or use his arms. He would lose his ability to eat or breathe on his own, and on top of all that, his life expectancy was put at age 20, if he was lucky to live that long. I felt an anguish that only a mother could understand, and my world stopped.

How was I to navigate through this mess? There was no cure for my son, and no treatments. What was this disease? What did it all mean?  What about my other children? The dark cloud was all around me. That was 11 years ago.

To say there have been many challenges over the years is clearly an understatement. My earlier pursuits of undergraduate and graduate degrees were nothing compared to the task at hand. Not only did my husband and I have to learn about the complexities of Duchenne, but we also had to become experts in a short amount of time in order to fully understand and comprehend this disease if we were to save our son.

As we embarked upon this endeavor we would learn the language of doctors and specialists, and enter a world of genetics: DNA, RNA, dystrophin, utrophin. We conversed with scientists and discussed with neurologists, orthopedists, cardiologists, and pulmonologists, and even pharmaceutical companies. The list went on and on.

We had to educate family, friends, teachers, schools, physical therapists, and attend conferences. We became lobbyists, organized fundraisers, and served on charities. Eventually we would have to research wheelchairs and adaptive technologies, and later assistive devices such as coughing and breathing machines.

Over the years difficult decisions were made regarding drug treatments. The side effects of some of the drugs, such as cortico-steroids, were dramatic. Another, gentamycin, also generated toxic side effects. But there was little else.

Further along we learnt about a small molecule drug, and participated in a very promising drug trial. My son was poked and biopsied, and became a guinea pig for the generations to come after him. It turned out that for 18 months he was on a dose that was actually ineffective. The trial stopped temporarily.

Throughout, the dark cloud remained. My son was getting weaker, and despite all we were doing we had little choice but slowly to surrender to the relentless nature of Duchenne, which was steadily stealing his life away.

Although there have been huge advances with the unveiling of new drug trials, and many scientists coming forward with renewed optimism and hope, today there is still no cure for my son, and no treatments. Despite this new tide of optimism, the obscured reality is that our older boys are loosing their lives to Duchenne.

The dark cloud became darkest about a year ago, when my son, then 17, had a routine visit to his orthopedist. After an examination of his back and an x-ray, the doctor informed   us that his scoliosis had suddenly worsened compared to a few months ago. Because of the curve in his spine, his chest was being rotated and as a result was compressing the space available for the lungs and heart. 

The doctor told us matter-of-factly that my son would need to have two rods inserted along his spine, routinely called spinal-rod surgery.

·      After making the incision, the muscles are then stripped up off the spine to allow the surgeon access to the bony elements in the spine.

·      The spine is then instrumented (screws are inserted) and the rods are used to reduce the amount of the curvature.

He said that during the six hour-long surgery he would require a blood transfusion, since there would be much blood loss due to the incision along the back as well as in the bones. But he reminded us that surgery would give him a chance of living longer. He said we needed to act quickly due to my son’s decreasing lung function, which is detrimental during surgery and recovery. I could swear the blood left my veins.  I felt so desolate.

After a visit to the pulmonologist, the go ahead was given. My son’s lung capacity was at 40 percent. Although it is preferable to do this type of surgery when they are younger and stronger, the doctor said if we act swiftly the surgery is still safe. He lectured not to wait too long, as lung capacity will get too low, and then the surgery will be more risky.  He added that he couldn’t guarantee anything.

The doctor’s words echoed loudly through my mind, my thoughts in a spiral. The idea of spinal-rod surgery induced a feeling of desperation and fear, the fear of my son possibly dying through this ordeal, and possibly dying if we didn’t go through with it. And the recovery process, what about that? I didn’t want to lose him. There was no guarantee he would make it. We were at a crossroad, an impossible predicament.

The bottom line was the horrific realization that we may lose our son sooner than we thought. We were damned if we did and damned if we didn’t. How could I make such a decision?

For three months, my mind and thoughts were in turmoil and the dark cloud followed me into my dreams. I was supposed to make a decision. How? I had so much advice designed to help me through my dilemma: “Pray”, they said,   “Through God you will know”,  “It is God’s will”,  “I will support you”,  “It will be fine”,  “The right answer will come to you”,  “Reflect”,  “I know a good priest”,  “A swami”, “A monk”, “You must do it”, “You must not do it”.

I searched through the chambers of my mind for answers and solutions. It was the most difficult time for me, the most difficult so far on this Duchenne journey. I was now facing head on the ugly reality of this cruel disease.

The only answer that came was nothing. Did this mean no?  Had the universe responded with a no? 

After those months of what felt like an eclipse, I woke up one morning, and drew open the curtains and looked outside. I noticed the colors of nature, the sunshine. I looked up at the blue sky. I felt free. The dark cloud had gone.

I felt as if a weight had been lifted off me. I felt liberated although nothing had really changed. I realized that the burden of the decision had deeply affected my happiness, my very nature. I acknowledged my internal conflict and let it go. I let all my thoughts go. I decided that I didn’t want to fight and resist anymore with this disease. These were precious days and I still had my son. My perfect, sweet child of 17 was here with me, to touch, to hug, to love. Nothing was going to get in the way.

We never did have the spinal-rod surgery. My son is 18 in a few months. We are in the so-called “late stages” of Duchenne.

I was recently at a back to school night for my younger son, where parents and teachers get to meet and connect. I noticed during the five minute interval between classrooms, how the crowd of parents rushed along, headstrong, serious and focused and impersonal, not even stopping to say “hello”.

And then I wondered about the world of students, how in contrast they would amble along, chatting and laughing, carefree, drifting from classroom to classroom.

I thought about my son with Duchenne, how he has missed much of this experience since he is home schooled, and how he may appear as an outsider. I reflected on his positive outlook, his radiance, and his mind so full of ideas and dreams. As I continue to navigate through this sea of uncertainty, I realize that I need to steer a less rigid course and to adopt a less serious way of thinking, and to enjoy the journey rather than worry about what comes next. After all, the future is something I have little control over.

I stood somewhere in between the two worlds that evening of focused parents and carefree students. I stopped amidst the flow of the parents hurrying past me. I opened my arms wide, as if feeling for raindrops. Even though the dark cloud had gone, there were still going to be rainy days, there were still tough days ahead.  But I had a renewed lightness of being. At that moment, I realized that through my journey with Duchenne, I really had learned to dance in the rain.