A Tale of Two Clock Towers

My neck ached as I stood gazing up at the Clock Tower, mesmerized by all the thoughts that were going through my mind. In 1859, during the heyday of the British Empire, this now famous icon was completed.

My thoughts were interrupted by its loud, forceful, grand chime.  Its sound vibrated through my body, from the top of my head to my toes. The noise from the nearby buses, motorbikes and cars distracted me for a moment as I noticed people pushing and bumping into me as they frantically looked up, not wanting to miss a single chime.

Again I drifted off to a historical time when Britain expanded and colonized much of the world. To imagine, during the Second World War, that despite the heavy bombing during the Blitz, when London was bombed for 76 consecutive days, the Clock Tower survived with little damage, and Big Ben’s bell rang accurately throughout.

Big Ben’s chimes would be heard in living rooms around the world during that time, through the BBC World Service, sounding loud and clear that Britain had not been defeated.

My mother was 11-years-old during the Blitz, and she recalls how every evening, her family would assemble around the radio, awaiting the six o’clock news.  She reflects on how inspired and patriotic she felt upon hearing Big Ben’s comforting, booming chimes coming through the radio before the news report.

My father reflects upon that time too, and on another clock tower, a clock tower literally on the other side of the world.

In the late 1800’s, the British North Borneo Company began to establish colonies throughout North Borneo. They created Jesselton, a main harbor and port. In 1904, the Atkinson Clock Tower was built in memory of North Borneo’s first district officer, George Atkinson. It sat up on a hill, close to the shoreline, and served as a beacon for ships.

 

My father was born and raised in North Borneo.  He was one of 14 children. During the Second World War, Borneo was engulfed in conflict for three years, marked by destruction, pain, humiliation and suffering. As a result, Jesselton was destroyed, almost flattened, except for three structures, the Atkinson Clock Tower being one of them.

 

The Japanese occupation was a harsh time for my father. Both his father and brother were falsely accused as spies, and imprisoned.  It was to be the last time my father would see either of them again. He was only 15.

My father recalls the comings and goings of Japanese aircraft overhead, and the distant sounds of bombs dropped. A few times, as the bombers got closer, he remembers how he had to run and hide inside the narrow ditches on both sides of a nearby field, close to the Atkinson Clock Tower. It wasn’t just the bombs he had to dodge but also the bullets from the machine guns that fired out relentlessly from these low flying planes. There have been stories of many who actually hid inside the Clock Tower itself.

 

After the war, The British Crown rebuilt Jesselton as the capital city of North Borneo. (After independence in 1963, the name changed to Kota Kinabalu).

 

The town grew into a modernized city. One does not always notice the Clock Tower these days.  It sits nestled amongst trees, and has been made into a heritage site. It is quite a distance from the shoreline now, as a result of extensive land reclamation and considerable development.

 

But nevertheless, there it stands, as a legacy, as a reminder of all that has happened.  Like Big Ben, the Atkinson Clock Tower, although not as famous or as glamorous, has stood the test of time. It has witnessed the rise and the fall of the British Empire, the Second World War, and most importantly, the memories that are forever cherished throughout the generations.

 

These are the stories that are passed down from our grandparents and parents, of a time past, but which deserve respect and acknowledgement and preservation.

Kindness

I must admit that I know very little about American football. Having spent all my youth in Malaysia, England and Australia, I was a relative newcomer to America, and to football.  I have no excuse, however.  I have lived here for 20 years.  I realized early on that watching football is one of America’s favorite pastimes, but respectfully, I didn’t really appreciate or understand it much, and grouped it along with all things American that were foreign to me, such as Thanksgiving and Ground Hog Day.

I did try to be as thrilled and wide-eyed as my friends were as they excitedly analyzed intricate details of each game, often down to every move. I was truly excited that they were excited, because they were my friends. But the only time I was up close and personal was when I was literally close to the TV getting a book or something when a game was on.

That all changed last week.  My perspective shifted. My son was given the opportunity to meet Rick Neuheisal, the football coach for UCLA, and he was invited to watch their training. 

We arrived early to avoid the meandering mass of cars on the LA freeways. The UCLA campus had a pulse, as we hastily made our way to the entrance gate of the football field.  We quietly let ourselves in and watched from the side as the players came through for practice, huge, strong men in armor-like football gear, some hurrying, while others strolled through. It felt intimidating but only for a moment.

How strongly they contrasted with my son, as he sat in stillness. Unprompted, a towering, broad, muscular football player came up to him, and put his hand out for my son to reach. He then placed his hand in my son’s upon realizing he could not lift his hand, and crouched down next to his wheelchair. Beneath his sturdy exterior was a gentle and caring person, who took time out to say hello. This happened again and again as these gentle giants boldly came through the gate and humbly approached my son.

Coach Neuheisal was warm and friendly. He spent some time with us before he hurriedly went off to train these men, with only two days to go before the team would fly off to Texas for the much anticipated game, that America would once again stop and watch and analyze.

We eagerly watched as newcomers to the training spectacle in front of us.  When everything was broken down into maneuvers, we understood more about the game. We looked out for the players we had just met, hidden now under their robot-like head gear, having to find their numbers on the backs of their shirts as they trained gruelingly for speed, power and agility.

After a few hours, we turned away from the football practice and headed out toward the gate. I looked back one last time at the players, and will always remember that underneath their tough, strong exterior is a kindness that I will never forget as these men gave of their time to meet my son.

I will be watching the game this Saturday, with a renewed understanding and appreciation for football. This time, I will be thrilled and wide- eyed, and up close and personal.

Sunsets

I strolled along the beach this evening, and watched the sunset. I stood in awe of the spectacular explosion of nature’s most brilliant colors displayed across a canvas of sky.  As the sun sank beneath the horizon, all around me the sky changed into fiery shades of oranges and pinks and then reds and yellows. The waves quietly lapped the shore and a light warm breeze touched my face as I stood there on the soft sand, as a witness to this wonderful phenomenon.

At that moment, I remembered as a child walking along the warm tropical beaches with my father, at dusk, just as the sun was about to go down, just in time for the sunset. As we made our way to the beach, he would select a long stick from the many tossed about in the grass. Once on the beach, he would stop every now and again, and draw out multiplication tables on the sand, to help me memorize them. I was always distracted. The sunset had begun, with its incredible colors emerging, splashing themselves above and all around us. I would hold my father’s hand tightly.

There are few things that remain unchanged in life. Life brings many uncertainties. Our memories and feelings linger but we grow older, as do our parents, and our children grow up. Everything seems to change. But sunsets, they never change. You can always count on the certainty of a sunset.  Every evening, we can stand in awe of the sunset.

I watched from the beach as my father held my daughter’s hand tightly as she led him across the uneven rocks down to the beach. He stumbled slightly as he reached the sand, as he seems to lately. He walked towards me as my daughter ran off beneath a crimson sky, toward the quiet waves lapping the shore. I once again walked with my father along the sun-setting beach whilst a light warm breeze touched my face.

STS/VECTTOR Treatment

Dr Rhodes and Dr Boudreau discuss STS with Dusty

Dr. Donald Rhodes

South Texas Innovative Medicine

Review

There has been considerable interest in the Duchenne community regarding a physical therapy system known as Dynatronic STS, (the new machine is called VECTTOR), invented by Dr. Donald Rhodes, who is located in Corpus Christi, Texas. The following is a review of a visit to Dr. Rhodes and some perspective on him and his treatment.

The treatment

Dr. Rhodes has a proprietary machine that passes low frequency electrical current through nerves. He believes that varied electrode pad placement combined with differing beat frequencies allow for treatment of different ailments. The electrodes are hooked up to the strategic nerves in the feet and hands, and send electrical impulses up to the place in the back that controls the sympathetic nervous system.

Here is his working hypothesis

“STS treatments are effective due to a combination of the following aspects of the treatments: low frequency electrical current passing through long sections of nerves; electrode pad placement (including acupuncture and reflexology points); production of cyclic adenosine monophosphate; the choice of the peripheral nerves being stimulated so that there is a cross over effect in the central nervous system; leakage of action potentials from the nerves being stimulated into nerves entering the sympathetic ganglia; the quadrilateral location of the stimulation; creation of action potentials through sympathetic nerve fibers, in the peripheral nerves being stimulated; creation of action potentials in the peripheral nerves being stimulated; activation of the sodium pump in the nerves being stimulated; production of ACTH; production of dynorphins, enkephalins or beta endorphins; creation of IGF-1; and creation and/or production of circulation altering neuropeptides such as vascular intestinal polypeptide (VIP) and calcitonin gene-related peptide (CGRP).”

Dr. Rhodes and Dr. Boudreau

Dr. Rhodes is an energetic, kindly man in his early sixties. He is a podiatrist. He is passionate about his technology. He says he has seen significant improvements in his patients suffering from RSDS, a chronic pain disease, diabetes, fibromyalgia and multiple sclerosis. He is extremely confident in the treatment’s ability to also help individuals with Duchenne and Becker muscular dystrophy.  Dr. Boudreau, also a kindly man, is an orthopedic surgeon and osteopath, and they share a practice and work closely together.  They are both disillusioned with the more conventional ways of treating patients with drugs. They believe that the system does not work as well if patients are taking steroids.

Cost

Treatment is expensive due to the cost of the machine, time spent with Dr. Rhodes and Dr. Boudreau and travel and accommodation. Dr. Rhodes charges $4,500 for the STS machine and a few hundred dollars for training.

My thoughts

Basically, the STS electrodes electrically stimulate acupuncture, acupressure, and reflexology points, as well as free nerve endings and nerve trunks.  Dr Rhodes believes that by improving circulation in the body, the body heals. Growing up in an Asian country, I was exposed to eastern medicine, and familiar with what was being presented.  I believe that it provides therapeutic relief for many ailments. Dr Rhodes is taking an ancient eastern tradition and combining it with modern technology.

Dusty is the 18th patient with Duchenne or Becker who is currently using STS. He receives 80 minutes of STS/VECTTOR treatment twice a day for the first month, and then 80 minutes a day thereafter. It is only Dusty’s 5th day of treatment. So far, I cannot say we have seen any visible improvement and nor does he report any. However, it is still early days, and I remain hopeful that Dusty will benefit. I will be tracking his progress.

Hooked up!

Hope...

I knew the runway was short, and the captain warned us of a steep take off, and then a pulling back of the engines, due to the noise restrictions in the area of our local airport.

The 737-800 was poised to take off, the engines start revving, the aircraft vibrating from the sheer power of its engines. It became louder, and louder, and suddenly there was an abrupt thrust forward as we sped down the runway. I glanced at my daughter and son next to me, and then to my older son in front. I had an adrenaline rush. This was a different kind of travel adventure. We were going to try out a new treatment I had heard about, a treatment for my son that would take us to Corpus Christi, Texas.

Suddenly, amidst the noise and the vibration, a tremendous force lifted us into our steep ascent as the engines roared loudly, and my head was planted back into my seat. I trembled, not out of fear but out of pure excitement, and hope.

Hope is a state of being, rather than an attachment to an outcome or a goal. It is that feeling at our core that leaps out when we are faced with something challenging to fight for. It sets us on a course of never giving up, never quitting, but forging ahead often against the odds. Hope seeks out the opportunities and possibilities in every difficulty, in every challenge. It is a conscious decision to have a glass half-full versus a glass half-empty.

Our journey was not a simple one. Traveling with a 330lb power wheelchair poses its own challenges, especially faced with multiple flights, and also dealing with transfers off one chair, onto another, requiring airline assistance to help lift my son safely. After flying on two flights, across four states, and two time zones, the last leg of the journey took us on a three-hour drive from San Antonio to Corpus Christi. We finally arrived on the warm, humid shores of the Gulf of Mexico. A brilliant sunset briefly greeted us as it disappeared into a dark sky.

As we settled in for the night, I was reminded of a scene in the 1994 movie Shawshank Redemption. This is a story where hope wins against the rigid pessimistic walls of a prison.

There are many great lines in the movie, but the part that stands out for me is when the character Andy talks about hope after spending time in solitary confinement for playing music over the speakers.

Andy: …that's the beauty of music. They can't get that from you. Haven't you ever felt that way about music?

Red: Well... I played a mean harmonica as a younger man. Lost interest in it, though. Didn't make too much sense in here.

Andy: No, here's where it makes the most sense. You need it so you don't forget.

Red: Forget?

Andy: That there are places in the world that aren't made out of stone. That there's... there's somethin' inside that they can't get to; that they can't touch. It's yours.

Red: What are you talkin' about?

Andy: Hope.

Red: Hope?

Duchenne is a difficult road, and presents many challenges along the way, and sometimes it does feel like a prison sentence. Gradually, duchenne steals many things, your ability to walk, to hug, to move, to talk, to breathe, but there really is that something inside of you, that it can never get to, that it can never take… Hope.