The Tunnel

 

The man assured me it would be OK. It would only take a few moments, maybe 10 minutes, he said, as he sensed my fear. They were only taking one person down at a time. I slid down the small opening in the ground after the man. I couldn’t see a thing. 

 

The tunnel was pitch black, its walls tight and one could only crawl along. We turned on our head lamps but seeing how narrow the space was offered little relief.  The man led the way. I could only rely on his breath as assurance he was still there. I kept reminding him, hey, not too fast, wait for me!

 

I hardly knew him, and I didn’t even know his name, I realized. We only just met, but he had been taking people along these historic tunnels for years. I found some comfort in that. I have been claustrophobic most of my life, but I kept the focus on being acutely present. The dark tunnel smelled damp and my mind kept wandering to images of weird insects or snakes, hiding in the crevices. 

 

His voice would quieten as he went around corners, and I kept shouting anxiously, wait, and he did. As we went further along, I noticed the silence, the stillness. I gasped just thinking that my family did not know where I was, underground, somewhere in Vietnam along the Viet Cong tunnels.

Angels

 

It was May 2022, just 4 months before you died. I came for your 96^th birthday dad. It was a wonderful surprise to see you in the car as I peered in after collecting my bags from the arrival area.

 

Oh my god, dad is here, I shouted in disbelief! He was mostly bed ridden that year. I was so full of childlike excitement, a mix of having survived yet another flight (I have a fear of flying) and the excitement of being back home in Borneo, but most of all seeing my dad again. It felt like the 1970s when I would return from boarding school, hugging my father once again, inhaling his familiar smell, absorbing, breathing, and feeling the hot humid tropical air against my face and body that I missed so much from the coldness of England. Suddenly all my worries and responsibilities melted away.

 

I clambered into the back seat of his Mercedes that he could no longer drive, and moved over to the middle seat next to where he was sitting.   I held his warm soft hands. So good to see you dad. Your eyes were soft and content. The driver seemed chuffed, proud to be driving his beloved boss and thrilled to see him happy with his daughter. Because of covid I hadn’t physically seen my father for over 2 years. The country had been shut down.

 

At times like this, I felt we had a secret. My dad acted differently around me. It’s like he no longer had dementia or whatever he was supposed to have. He seemed his old self. He would ask about his grandkids, how I’m doing and perhaps a comment about what was going on in world affairs. Momentarily he remembered everything.

 

A few days later I asked if he would like to go for a drive. He didn’t always feel like going out. In his mind he had a myriad of things to do, appointments to keep with the embassy or clients he had to see, remnants of his old life mixed in with selective and vivid memories of then and now.

 

My dad enjoyed going to the market to buy fruits. It was necessary to take an entourage of helpers or staff as we ended up calling them. It would take 2-3 people to maneuver him in and out of the car, the driver, and the driver’s wife who was fond of my dad. My dad loved anything that included being with other people and sharing the experience.

 

This time, however, it was just the driver, my dad and me. We were in the car ready to set off.

 

I would like to see the angels, you said.

Where are the angels? I would ask.

You know where the angels are, he would reply, like of course I should know.

 

I had an idea to go to the church I was married 30 years prior in my grandmother’s village of Limbanak. Perhaps going to the church meant seeing the angels. The village used to be far in the countryside, but now a days with the modern roads, it was only a half hour away.

 

The road presented with a hopscotch of potholes due to the rainy climate, but the Mercedes had good suspension. Sometimes as we went around a corner my dad would end up slumping on me, and I would gently nudge him back. I thought back to many a drive we had. He wasn’t the best driver quite honestly, a little lackadaisical, too laid back. At times he would drift to the middle of the road, and we would hysterically say, dad you can’t do that, to which he would calmly say it’s all okay after coming so close to all of us being killed by an oncoming truck.

 

On the winding unpaved road toward the church, we drove past the remains of an old padi field, that used to dominate the landscape in this area.  A small hut appeared, so picturesque, centered in the field, reminisce of a time long past. The scene looked like a watercolor painting with sunlit trees and tall bright grass all around.

 

Look dad, this is the area of your mother’s village! The driver pulled over. My dad looked out of the window lifting his head to see and pointed, look that’s her house, glancing over his glasses at the deserted hut.

 

Yes dad, I think that could be it, going along with his memory even though the likelihood was as remote as the whereabouts of this village once was.

 

Perhaps he sensed his mother there, his brothers, sisters. Could this be where the angels were? My dad seemed comforted, calm.

 

I described to the driver about my dad’s life here as a boy, telling the story of his humble beginnings, his simple life, but really for my dad to hear that I really knew his life, and that his stories were never to be forgotten. They will be passed along the generations.

 

When I reflect back to that day, I was truly in the presence of angels.

 

 

The deserted hut in the field that day

 

 

Letters to my Dad

My late father was one of my most favorite people in the world. After he passed away last September, I started writing letters to him as a way to connect to him, to remember him and as a way to deal with my sadness.  He used to love the ways I wrote letters when I was in boarding school, so I felt moved to start writing letters to him again. Of course, I imagined his reply to me.

Dear Dad,

It’s March 24, 2023. You’ve been gone 6 months. I miss you.

I went for a drive today to look for the yellow mustard flowers that usually swarm the hills this time of year, especially after the heavy rains we’ve been having. I was out of luck, but on the way home I saw an old silver Mercedes and it reminded me of you.

It took me back to when you used to come home from work in your silver 1970’s model Mercedes. I must have been 7 years old. And I can’t remember if you beeped at the bottom of the driveway or if I just heard your car, (as I would be anticipating your arrival in the late afternoon), and you would wait for me while I came running down the steep driveway as fast as I could to sit on the bonnet (hood) of the car. I remember the warmth of the bonnet and hanging on tightly to whatever I could reach for. The engine would rev a little as you steered the car up the long driveway into the garage. I always kept my balance despite the inclination!

It was a feeling of pure joy to have you home again. I remember feeling so excited, and today it really made me smile.

Love, Cath

xxx

Dear Cath,

I miss you too. Yes, I remember that well. I couldn’t wait to see you after my busy day at the office seeing clients. I would honk my horn, beep beep, and wait for you to come running down the hill. You would run so fast, and you never had shoes on. You would jump onto the bonnet, and then I would drive up the hill. And I revved it for a bit of excitement! I never worried you would fall. You were a pro. It was exciting that we did something a little thrilling. I know Mum didn’t really approve!

We did so many things together after I came home. Do you remember? There were the times we would go hiking after we had our tea. Just steps from the house we would find a sturdy long stick each to help us with our adventure. In those days before the surrounding area was built, our house was like an island embraced by the rainforest. Just down from the house there were narrow orangey clay paths carved through the dense jungle. I would always whistle a tune to let people know we were coming. But I don’t remember ever bumping into anyone.

I would tell you so many stories about my childhood. One time I shared how it was during the Japanese occupation when my brothers, sisters and I would hide out in the nearby jungles to be safe. I pointed out plants to watch out for, and insects to be wary of.

And of course, our walks on the Tanjung Aru beach. Do you remember how I taught you the multiplication tables by writing it out on the sand? And in between we would have a race. But I let you win! Oh, except for this one time, I had to show you how fast I really was!

I know we shared many memories and experiences. They are there to make you smile.

I hope you find your yellow mustard flowers next time.

Love, Dad.

In memory of my sweet Dad, 

Thomas Jayasuriya.
(5/5/1926 – 10/9/2022)

Goodbyes are only for those who love with their eyes. Because for those who love with heart and soul there is no such thing as separation.
― Rumi

 

Photo Of My Father

I was fortunate enough to grow up in a tropical paradise. The island of Borneo is an exotic island and I always thought of my childhood in that way. My mind drifts back and forth to memories that are triggered as I focus on the old black and white photograph in my hand. My father was instrumental in my life, and I felt so proud of him. The photograph was taken while he was in England in the 1950’s, when he had won a 5-year scholarship to study law. It was unusual at that time for an Asian man to be included in the prestigious college he attended. My father was a well-dressed, tall, dark man with a broad smile. He had curly hair, from his Sri Lankan roots, which he slicked back with a sticky gel, like they did at that time. He lit up any room and was a real gentleman. In the photo my father is posing crouched down, wearing a suit and tie, and a boyish smile that draws you in. He had his whole life in front of him. In the background there’s a park with people and in the distance part of an old stone building with a spire.

My father was in his 20’s at the time the photograph was taken, when Britain still colonized much of the world including Borneo. The Japanese arrived in Borneo in 1946 and plundered the land. I remember my father telling me that one day, at age 16, there was no more school. The war ravaged on for some years. Then came the day the Japanese soldiers came to his house to take his father away. They had falsely suspected he was a spy. That would be the last time he saw him.

I put my glasses on to really inspect my father’s face in the photograph. His face did not reflect any of the burdens of the war in the 5 years prior, nor the grief of losing both his parents and a brother. What I see instead is the kindness in his heart and the compassion he felt for all people. I feel his sense of adventure and having a purpose in life. He knew how fortunate he was to have the opportunity presented to him. He approached it with courage and fearlessness.

As I glance again, I wonder who took the picture. I am most fortunate to be able to still ask him that question. Now at age 93, my father still has that same boyish smile.

Adventures in Travel

Beautiful islands emerged out of the calm tropical sea. My family owned a small boat with a 40HP engine that we took out onto the ocean. In those days we would just drive the boat up to the shore and planted the anchor right onto the soft sands.

Clambering over the rocks with my father when I was young as we walked around the islands, holding his hand in the warmth of the sun is a moment I will not forget.

During one conversation he said how it was during the war, when the Japanese bombers would come down low.

Engines roared. Plane rides were exciting to me. Until the day an engine exploded on take off.

Flash-forward to now, I have a flying phobia. But I don’t let that stop me traveling to far-flung places.

Granada, Spain, had a small airport. I was reluctant to fly into it. I looked up plane crashes to discover there hadn’t been any. But I wanted to be safe anyway, so I flew into Madrid and took the five-hour train ride.

Houses perched delicately upon cliffs, colorful in the setting-sun hours, picturesque as we sailed the azure waters of Cinque Terra.

I was happy once I reached the summit, my altitude sickness faded into thin air.

Junk food is not my forte and when I’m traveling I eat as healthily as I can. Thailand and Vietnam suit me most, local pho or white rice with chicken. It’s different for me now since I became a vegan.

Kaleidoscopic sunset colors in Costa Rica reminded me of those in my hometown in Asia. Same latitude.

Longing for something a little different I took a trek to Iceland with my daughter.

Meeting like-minded travelers finds one talking to people you would never otherwise talk to.

Necessary, that when in Kingston, visit the home of the great Bob Marley.

Orphanages were everywhere in Cambodia. I visited one and made a donation to buy a school desk and computer.

Perfect visibility provided the best diving in Tahiti. It was my honeymoon. My son was conceived.

Quiet and contemplative was the moment I lay in the soft snow after a fall in the Swiss Alps, my skis nowhere to be seen.

Realizing there I was in Paris, and that that it had been 30 years since I last saw Rodin’s Le Ponseur.

Sometimes when I travel I bring my own pillow.

To travel is to change up your routine and your mind-set.

Unexpected weather forced us to abort a landing during a typhoon in Hong Kong reinforcing my fear of flying.

Very often I find myself afraid. My father told me he didn’t fear anything. We were different in that way.

Winding up in California may have been the best thing I did.

Xtapa, Mexico, I had to have a Bloody Mary before boarding the flight.

You only get one life. Live it.

Zigzagging along hiking trails is my daily ritual. I get the same feeling as traveling.

Thoughts on the FDA Advisory Committee Meeting to Consider Eteplirsen

Catherine Jayaysuriya

Dusty’s Mom

Coalition Duchenne

Founder and Executive Director

Monday, April 25th's Advisory Committee meeting felt more like a cross examination in a criminal case than a fair discussion about the efficacy of a promising treatment for Duchenne.  As the clinical data on eteplirsen was scrutinized, minor details became exaggerated, such as  doubts on validity of the 6 MWT, and ignorant opinions such that boys with Duchenne can walk if they put their minds to it, to be the same level as key facts. I question their competence to even be on the panel.

The Advisory panel stood in judgment of something they don’t fully understand, which is the complexity of the Duchenne situation. They characterized the parents as ‘emotional’ which diminishes our input as we actually have the best ‘fact based’ knowledge and first hand experience of Duchenne.  And they didn’t seem convinced by the testimony of parents, and most importantly, the boys who are on the eteplirsen trial themselves. There is a strong need to break away from herd mentality of bureaucracy and business as usual.

I advocate for the generation of boys who have lived the natural progression of the disease.  I feel certain that there were many on the panel who do not understand that when Duchenne is left untreated, the progression is cruel and relentlessly progressive.

Dusty Brandom, age 23.

My 23-year-old son Dusty Brandom will not benefit from eteplirsen but would benefit from the follow on drugs targeting other exons once approval is made. Dusty has been waiting for this treatment ever since we funded Steve Wilton's oligos work through the Dusty Brandom Fellowship in 2004. It feels like Dusty has been hanging on to a cliff, but now by his fingertips. By the FDA not approving, we will lose a generation of boys including my precious son. We really are running out of time.

Steve Wilton and me.

The judgment made at the 11^th hour literally, felt like a series of bullets that deeply wounded our Duchenne community. But we don’t fall easily. In spite of my sadness and disappointment, I do have a glimmer of hope, because FDA Director Janet Woodcock, in her opening remarks, reminded the panel of the harm that could be done by failing to approve a drug that does work. The final judgment comes May 26^th.

Thank you Senator Marco Rubio, for championing our Duchenne cause in your speech to Congress today.

Lessons From A Mountain

Climbing Mt Kinabalu!

The months of planning and preparing for Expedition Mt Kinabalu 2012 have come to an end. The climb was a success and now everyone has left, mostly by plane, back to their countries, their homes and their families.

I decided on my last day in Kota Kinabalu, to take a boat trip out to one of the nearby islands, to take advantage of the fact that I was free for the day.

As the speedboat left the dock I looked back at a cloudy sky, and noticed every now and again, Mt Kinabalu emerging in and out from behind the clouds, childlike, as if playing a game. It made me smile.

I reflected upon our recent climb as I kept looking back at the mountain dancing with the clouds.

Although we had a few parents who were climbing for their sons, most of our 64 climbers who participated this year had never heard of Duchenne muscular dystrophy. Over the months before the climb they had contacted me, wanting to be part of our quest to raise global awareness for Duchenne and to help make a difference.

The two-day climb was challenging. The first day was a long hike up to 11,000 feet where we spent the night at our lodging Laban Rata. Much of the group arrived in the pouring rain and by mid afternoon a heavy mist had swept in, dampening any hope of seeing the mountain peaks above. The tiredness of the day kicked in and the altitude didn’t help, but we were all upbeat and happy to have the day’s climb behind us.

The weather on Mt Kinabalu is unpredictable, and sometimes the summit trail is closed if conditions get too dangerous. With the rain beating down outside, we listened to this briefing while we ate dinner.

The next day came around quickly, and not many of us slept much. In the early hours at around 2 am, we began to get ready for the last 2,000 feet to the summit. As we busied ourselves getting equipped with jackets, headlamps and gloves, I suddenly realized that not only had the rain stopped, but above, the stars were all around us. This meant that we would have a most amazing view from the top, and most exciting for me, we would be there to greet the sunrise.

As the dawn approached we saw the shadows of the peaks on either side of us, and in the distance, a trail of shimmering lights from everyone’s headlamps leading us to the top.

The last hour was a test of physical endurance and mental resolve. The rock face was slippery and relentless. Out of the darkness we clambered over the last of the granite boulders as the sky transformed into a kaleidoscope of colors. We reached the summit in time for the sunrise. After the long climb the victory was sweet. Being surrounded by the sky’s comforting colors felt tranquil and peaceful.

The climb down had its challenges, with some slips and falls here and there, but nothing serious. By the time we arrived at the bottom, Mt Kinabalu was completely shrouded in its cloak of mist.

Back on my island trip, from the boat, I once again glanced back at Mt Kinabalu. I could make out the faint outline of its peaks through the distant clouds. I smiled again to myself and then smiled at the mountain.

I was reminded of our oneness and how we all came together for something good. Everyone travelled to Sabah, leaving behind their busy lives, to climb for all the boys and young men with Duchenne. Our complaints of exhaustion, of our tired and aching muscles faded to thoughts of the boys and young men who we climbed for. It was in the quiet moments that we understood why we were here. It is the smiles I will remember; smiles when we reached the summit, and when we got back down the mountain.

But it is the smiles of the boys and young men with Duchenne that I will remember most. The smiles of Albert, Azmi, Edmund, and my son Dusty, innocent, pure and playful, that are etched into my mind.

Again, like I always do, I blinked Mt Kinabalu into my memory.

Lucas Brandom Climbs A Mountain In Borneo for Duchenne

Lucas Brandom climbing Mt Kinabalu in 2011

(This article was written by Patrice Apodaca, a writer for the Daily Pilot, Newport Beach).

Lucas Brandom climbed a mountain for his brother.

Shivering cold, soaked to the skin and numb with exhaustion, Lucas made the excruciating final push to reach the 13,455-foot summit, then swore he'd never do it again.

But, sure enough, after several months, the memories of his aching body receded. Propelled by the strength of his brotherly devotion, the 17-year-old Newport Beach resident is preparing to climb Mt. Kinabalu on the island of Borneo inMalaysia once again to promote awareness of the disease that has robbed his sibling of a normal life.

Lucas is the younger brother of Dusty Brandom, a remarkable young man whose battle with Duchenne muscular dystrophy, an incurable degenerative disease that afflicts one in 3,500 boys, has been previously chronicled in this column ("Dusty's road is winding but rewarding," June 17, and "Dusty continues on his path," Nov. 6).

Dusty, now 19, has lost the use of his arms and legs, requires breathing assistance, and has severe scoliosis and a raft of internal ailments caused by the genetic muscle-wasting disorder. In the year since I first wrote about him, the disease has continued to take its toll; he can no longer eat solid food, and subsists on a diet of Ensure liquid supplements.

Dusty has endured his plight with courage, dignity and resilience. Yet, as anyone with a seriously ill family member can attest, the affects reverberate beyond just one person.

The disease has also had a major impact on the young lives of Lucas and sister Gabriella, 12, who have grown up watching their beloved big brother suffer as Duchenne continues its cruel onslaught.

But if their situation invites sympathy, Lucas offers another perspective.

"Some people could get angry, but at the same time you could look at it as a gift," he said. "People can learn a lot from the disease, just about life. People with Duchenne don't really have egos. They're non-judging.

"It showed me how to see people for who they are, in a nonjudgmental way."

Duchenne has also influenced how Dusty and his siblings relate to each other. There's no competition or discord among them, and they are highly protective of each other.

"I've never gotten in a fight with my brother or sister," Lucas said. "It's made us all more mature."

I don't doubt it. To an outside observer, the Brandom kids appear to have a worldly wisdom and quiet intensity that's unusual to have at their ages.

While their lives revolve around a tight-knit family unit, Lucas and Gabriella have also found ways to pursue their own interests.

Lucas, who will start his senior year at Corona del Mar High School in September, is an accomplished musician and plays bass in the band Final Crush. He practices at least four hours a day and hopes to study music in college.

Gabriella, who is home-schooled, loves to bake and cook vegan meals from scratch. She has also discovered a gift for storytelling, and composes letters to Dusty as if the characters she invents have written them.

"They have their own secret language," said their mother, Cath. "Their ages are different, but somehow the age doesn't matter."

The family also rallies behind the charity started by Cath, Coalition Duchenne, which raises funds to advance research into treatments for the cardiac and pulmonary damage caused by the disease.

The nonprofit also organized last summer's mountain climbing expedition to generate awareness of Duchenne.

Dusty was able to make the difficult journey to Borneo then and waited at the hotel with his father, Neil, and Gabriella, while Cath, Lucas, and 33 other climbers from around the world ascended the mountain during an unusually fierce storm.

The second Kinabalu climb is scheduled for August. This time around, Lucas plans to train beforehand, and will be accompanied by two friends, Ian Henderson, a recent CdM graduate, and Evan Romano, who will graduate next year with Lucas.

A group of 60 climbers from around the world will join the effort, including a documentary film team and the U.S. ambassador to Malaysia. The expedition is generating a good deal of publicity there; last week Cath was interviewed about the climb on Malaysian television.

Uncertain if he could once again tolerate the long journey and conditions in Malaysia, Dusty has decided to stay at home in Newport Beach, along with Neil and Gabriella.

There's no trace of self-pity or bitterness in Dusty, who said he simply "tries to deal with things as they happen."

He thinks it's "really cool" that Lucas will once again trek to the mountaintop on his behalf.

"It's really great that everyone is supporting me and all the other boys who have Duchenne."

I asked Lucas to recall some of his favorite memories of he and Dusty together. He talked about playing at the beach when they were little and Dusty could still walk. He remembered an elementary school talent show where they performed together. Lucas was on drums and Dusty was in his wheelchair, playing guitar.

But that was then. Now, as Lucas looks ahead to his second attempt to scale a mountain for all the boys afflicted by Duchenne, he knows it will be Dusty he'll be thinking about.

"He motivates me to climb," he said.

For more information on Coalition Duchenne and the Mt. Kinabalu expedition, visithttp://www.coalitionduchenne.org.