Q & A

What is Duchenne muscular dystrophy, and when were you diagnosed?

DMD is a genetic disease that slowly weakens and deteriorates voluntary muscle strength and mass.  It’s x-linked recessive and inherited from mothers alone, affecting mainly boys and rarely girls.  I was diagnosed after a muscle biopsy at the Hospital for Sick Children as a six year old boy.

How has this illness affected your life?  Do people treat you differently?  If so, does it bother you?

Since my toddler days, I’ve been surrounded with limitations that have continued their progression through the years.  As a result, I’m unable to write with my hands or feed myself anymore.  The weakness has also compromised my ability to expel the healthy amount of carbon dioxide, which is why I’m on a ventilator.  I’ve already outlived the statistics that I should have been dead in my late twenties, so who knows what the future might bring?

When it comes to being treated differently, it depends on the person.  Some treat me normally, some treat me like a child, and some disregard me altogether, while others probably think I’m contagious.  It bothers me to a certain extent because no one should have to earn mutual respect, but there’s no loss of sleep.  I kindly correct them when the opportunity arises, but don’t waste time on the ignorant.  Generally speaking, people are very courteous and helpful.

What does DMD mean to you?

It means I have a physical hindrance.  Of course, to say that it hasn’t influenced my character would be a lie, but I’m not defined by limitations.  I’m defined by my person, according to my thoughts and ideas, values and beliefs, and strengths and abilities.  I write because of these things.

With your limitations, how do you still write?

Though I’m dependent on those around for almost every need, I’ve been blessed with the ability to use a computer mouse.  I type via an onscreen keyboard called WiViK by clicking individual letters, which can be rather exhausting, but with the predicted words feature, it makes things much easier and faster.  Voice recognition also helps on occasion.

What is your first book about?  How does it relate to you as a person?

Ridiculous: The Mindful Nonsense of Ricky’s Brain is about everything.  It’s an autobiography of sorts, but different in that there are both fictional and real-life stories… not to mention romance, tragedy, comedy, self-help, philosophies, and much, much more.

This book is who I am.  It’s a record of my brain throughout the several years of writing.  It also reveals the strange and perhaps contradicting dichotomy of my person.  I can easily go from one extreme to another.  While reading it myself, even I thought I was bipolar!

The book also means a lot because it’s a dream come true that required much time and effort, and a great deal of endurance.  I literally typed everything with one finger.  It’s a wonderful accomplishment for me.

How did you come up with the title, “Ridiculous: The Mindful Nonsense of Ricky’s Brain”?  Who is that adorable kid in the photos?

As someone who thinks too much for his own good and is rather familiar with the craziest, most off-the-wall moments, the title came naturally.  Humility drove me to call my ramblings nonsense, while arrogance forced me to claim a little mindfulness.  This is called “tact”, hence the name.

Those photos are of me when I was little.  If you look carefully, you’ll see they were all taken from the early Eighties.  The second last one is of my nephew.

Why did you write this book?  Did you receive any help?

This might sound ridiculous, but I wrote it for the reason of immortality.  With Duchenne muscular dystrophy, you never know when you’ll run over the bucket.  Words have the potential of lasting forever, and I want to be remembered for who I am, instead of another generic “brave soul” who struggled through the difficulties of life.

It’s also my passion and desire to redefine the things I observe and experience.  I find it thrilling to give thought provoking spins to the meaningful, particularly the many oddities that no one has ever thought to imagine.  I enjoy looking at life with a satirical point of view.

Without the help of my incredible Dad, this book would never have had a chance.  From opening bank accounts and making telephone calls to getting printed and shipping inventory, it was all him.  I received much advice and assistance from friends and family as well, while both my parents handle all the packaging.  However, I did everything else myself, including editing and designing, along with marketing and the publication.

What or who inspires you to write?

Women.  They’re the epiphany of selflessness.  I suppose I must have sensed this from a very young age.  I’ve always had a fascination towards the female gender.  I write to learn, and perhaps even encourage women to know how beautiful they are for their individual selves.  In my journey of romance, or lack thereof, I’ve come to realize that a woman’s intentions are what make her gorgeous.  Understanding her is the most delightful undertaking.

Why do you write so much on romance?

Every lesson in life is learned through individual experiences, but love is a constant journey of discovery.  I look to be more, and so write on the subject.  I’ve lost a number of dreams because of my disability, including the ones of becoming a cartoonist and chef, but having the great romance of my life is the last of them.  Within the confines of the written word, nothing and no one can take them away, while I strive for the continuance to learn its meaning.

Can you explain your motivation and reasoning behind writing love letters to all races of women?

Have you ever noticed how the sunlight glows in a woman’s radiance, when her lips dance in song to the melodies of the angelic curves of her smile?  Her warming gracefulness instils a resonating silence that helps us to remember that the true beauties of the universe can neither be corrupted nor destroyed.

Because of my need to redefine all things known to humanity, I envisioned a way to reinvent racial stereotypes and make them endearing.  I took the initiative to encourage even one person to feel good about herself, but when the opportunity arose to include everyone, I went ahead and did my thing.

What does writing mean to you?

Writing is everything to me.  It’s all I have that remains because without human expression, life becomes an existence.  I focus on my abilities, for literary art is an extension of who I am.

It’s also a challenge, which is why I sometimes take months to come up with a piece.  I thrive on originality and as a result, set obstacles to make sure I’m capitalizing on my skills.

After writing poetry for a while, I found it had too many restrictions.  It didn’t allow me to articulate myself in the way that I needed.  I had to change my medium to that of writing articles and blogging was the perfect choice.  They eventually evolved into a book.

Besides writing, what other activities do you take pleasure in?

There isn’t much I can do physically, so I spend most of my time in front of the computer.  In addition to the Internet, it’s a tool that brings an alternate freedom.  I can watch movies, listen to music, and interact with numerous people.

As a quiet thinker, I don’t mind sitting back and observing others, but always enjoy an interesting discussion.  I tend to feel out of place whenever I’m in a social situation involving a group.  I prefer one-on-one conversations because I get to absorb more from the person.

Do you get out much?  How about travelling?

Unfortunately, I don’t get out as much as I’d like, especially during winter when my hands are too frozen to control the joystick.  Gloves make it impossible to drive.  It’s hard to travel long distances, but local treks are fun, whenever possible.  However, Mom is a liver transplant patient due to cancer, while Dad has a hectic schedule.  I can’t be alone because of the ventilator, and since caring for me requires a certain amount of training, the option of friends is slight.

What differentiates you from the disabled community and the rest of the world?

Our bodies are worthless if we don’t have a little character, and people who know me personally would agree that I’m a character, which isn’t necessarily a good thing… for others!  I blame it on sarcasm.  I’ve learned an emotional independence that continues to strengthen my foundation as a person because physical limitations are simply external.  I acknowledge without focusing on them.

It’s funny because while I was blogging, a number of followers accused me of playing the sympathy card.  I have a disability and include it in my writings from time to time.  Muscular dystrophy is a significant part of my life and not something I can get away from.  Then again, I can’t control how others react, and if some of them choose to feel sorry for me, it’s their problem.  I call it “reverse sympathy” because there’s no hope for them either.

I’m glad and I’m sad and I’m mad and I’m bad.  I’m stubborn and ridiculous and my humour is insane.  I’m mysterious and eccentric and annoying and outspoken.  I don’t compromise anything because I’m not a one-dimensional person.  I’m me.

What advice would you give to those facing similar challenges?

Find yourself and build on your character without relying on external sources because there’s not a person in the world who can give better advice than yourself.  You already depend on others for all things physical.  If you don’t learn a sense of emotional independence, what’s the point?  Only you can hinder your ability to choose.

Were you always an advocate for Duchenne muscular dystrophy?

No.  To be honest, I never cared much for the disease until I started promoting Ridiculous on Facebook.  I had no idea what joining the DMD community would entail, but sooner than later, realized how much despair existed within the hearts of parents.  It moved me to change directions, to encourage people that getting past the 30 year milestone was possible.  I never joined any camps as a child and didn’t have friends afflicted with similar health issues since, well, the counsellors were too old for me (they thought) and 99% would have been boys.  However, I felt a strong calling to try and lift a few spirits.  I think I did.

How would you describe your life outlook?  What motivates you on a daily basis?  What things don’t you take for granted that others do?

Sometimes when I awake in the morning, I wonder if it was all just a nightmare.  That is, until reality hits like a ton of bricks in a matter of seconds and I realize I’m surrounded by weakness all over again.  Otherwise, I remain neutral and calm.  I’d describe my outlook as something akin to a bowl of wonton noodles; light and healthy, but hearty and delicious.  I’m unaffected because I find humour in almost everything I see, but grounded because I’ve found acceptance.

Many things motivate me, including food, food, and even more food!  It’s a miracle that I can still eat because most people my age with the same condition have feeding tubes.  I find motivation in writing romance.  While I already know where I’m headed after I go out of print, what would be the purpose of life without sharing?

As far as taking things for granted is concerned, who doesn’t?  I’m not above anyone because of the cards I’ve been dealt.  I have wheels, not wings!

What are some of your favourite things?  What is the one thing that makes you truly happy?

My favourite movie is a Korean romantic comedy called My Sassy Girl, while my favourite song is Aerosmith’s Crazy.  I love Scrabble and everything blue and my favourite game is The Longest Journey.  Authentic Chinese is my favourite cuisine so definitely Mom’s cooking.  I love chicken wings and chicken in general, fish, eggs, noodles, and soup.  Is it strange that I don’t like rice?

The one thing that makes me truly happy is having a good poo in the morning.  There’s no better feeling than emptying out completely and making room for more food.

What are some of your quirks and irks?

Obviously, I’m a huge fan of toilet humour.  I can go from talking about poo and philosophical things to making everyone throw up from my vomit-inducing ideas of love.  I’m usually cold when others are hot, and vice versa… probably a subconscious effort to piss them off.  I can roll one eyeball around and keep the other straight.  I have double jointed pinkies and am probably the only ventilator user in the world who can whistle.

My sense of humour is pretty much loony bin, and poking fun of myself is a way to keep my sanity intact.  There are times when I’d burst into laughter out of nowhere, scaring friends and family.  I love things that are plain and simple because unnecessary patterns disturb me.  All the walls in my room are white.

As for the things that irk me, overly nice people are highly annoying.  Souvenirs and clutter give me nightmares, while bad spelling and grammar drive me nuts.  Moths and butterflies scare the crap out of me and I’m horribly afraid of clusters of tiny holes.  I get frustrated when people try to finish my sentences, especially when I talk between breaths.

Is there a stigma associated with being born in Hong Kong instead of North America?

Other than the fact that everything is made in China, including myself, there isn’t.  Canada is a very multicultural nation, and while racism exists, tolerance outweighs the negative.  I wonder if it might have something to do with my disability, in that condescension neutralizes prejudice, but nevertheless, it helps that I don’t smell like mothballs.

Do you have a hero or heroine that you think highly of?

The truth is that I’ve learned so much from my mother.  Her unconditional loving kindness, patience, and cares, how she puts others before herself, have given me the chance to learn, at a very young age, what it means to be a man.  Without her, I wouldn’t have known where to begin.  There are moments when I haven’t the slightest clue as to what I’m fighting for, but I continue striving for more to become a worthy son.  I’m an aspiring gentleman because of her.

What do you want or expect out of life (i.e. personal and professional goals)?

If there was a cure for Duchenne, everything would be much easier.  I hope I’ll live to see the day when I walk again.  Professionally, I want to get noticed by editors of magazines and newspapers because I’ve always wanted to be a columnist.  Writing articles is my forte.  I want to challenge myself regularly and make a living doing what I love.

If you had the opportunity to do anything in the world, what would it be and why?

If some poor girl were to actually like me, I’d friggin’ marry her!  Spending the rest of my life with the girl who sweeps me off my wheels, is and will remain to be my greatest hope and dream.  I’m tired of being alone.  I’m not just looking for someone to love, but a woman to fall madly in love with.

What obstacles have you dealt with in your quest for love?

Back in 2009, I met a girl from online who came to my house.  Since she didn’t turn out to be a crazed murderer, I asked her on a romantic date.  She agreed, but changed her mind in a matter of days.  I think she liked me, but eventually realized she wouldn’t be able to handle a relationship.  I don’t blame her because I understand the realities of my romance.

It isn’t easy for someone to want to be with me.  Who wants to put herself in a situation where she has to take care of a physically disabled boyfriend, or husband?  And it’s conflicting because while I’d give anything for a chance, I don’t want to become a burden to the one I care for.  I blame it on my giant mechanical derriere.

Do you have any departing words or comments?

Believe it or not, I’m running out of words for once.  To be quite honest, it’s a struggle to create quality content because I’ve already written so much, but I’m always up for a challenge.  All I need is my finger and a blank document.  Painting dreams in literary form?  I can do this.  My writer’s block enema is my mind…