Reality Check

There are times when we choose to dwell unnecessarily on the insignificant circumstances of our own petty lives. Call it what you will: narcissism, egoism, conceitedness, etc. The fact is, we are all guilty of it.

Problems, trials, tribulations, troubles; they are, on their own, trivial notions. Yet, when they become personalized, when they touch our lives and affect our daily musings, they become entrenched with a new form of individual significance.

Why is this problematic? Quite simply, it is an egocentric way of existing. We truly believe that our own circumstances are distinctive, exclusive and idiosyncratic.

The harsh realization is that nothing we experience, no matter how personal or individualistic it may seem, is truly ours. The difficulties an individual encounters on a daily basis are not unique to that individual. On the contrary, millions of other individuals also share the same difficulties, the same predicaments and the same strife.

The reality is, our problems are generic - not individualistic. If we were to put our audacity aside, we would be more inclined to accept this misunderstood truth.

We are a population of bold, brave and confident individuals; however, we are – more often then not – fiercely out of touch with reality.

The troubles that affect those around you will undoubtedly end up affecting you as well. Yet, we often choose to disregard these problems. We discount the significance of a particular problem until the very moment that it becomes personalized. It is at this point that the dwelling begins. We complain, we grumble and we object to the unfairness of the situation. These problems, however, are rarely unfair, unjust, or unreasonable. Often, these problems are brought on by our own naïve and ignorant behaviors.

Ask yourself: are your problems really YOUR problems? More importantly, do they warrant the kind of idiosyncratic griping that has become the social norm? Perspective is essential; be realistic when dealing with your own ostensible troubles.

Life is short; focus on the good stuff.

Look to the Cardboard

At the most rudimentary level, The Toronto Marathon is about one thing: running. The race is a test of endurance, stamina and physical conditioning. However, to fully understand the true nature of the marathon, one must look beyond the run. The true spirit of the sport lays not in the activity, but in the mentality of those who participate.

On Sunday, October 19, I took part in my first half-marathon; a 22km run from Mel Lastman Square to Queens Park. It was one of the most arduous, yet rewarding, experiences of my life.

The run itself was enjoyable. The air was crisp, the temperature was a cool 6 degrees and the sun was shining vibrantly overhead.

That being said, it was the participants who made the run a truly memorable experience. Each one, it seemed, had a different reason for taking on such a grueling task. As I learned that day, each runner has a story to tell.

Often times it’s the cardboard signs that tell the stories. Cardboard, it seems, provides the perfect means for proudly communicating personal narratives. Some messages were simple: “go daddy go” and “we love you mommy”. Some were motivational: “hills build character” and “pain is temporary, quitting lasts forever”.

Other messages, however, were truly inspirational. One specific sign comes to mind.

While running on Yonge Street past Sheppard Avenue, I noticed an elderly couple holding a large cardboard sign that read, “thank you for giving a life to Elisa.”

Elisa Linton, the young girl the sign was referring to, battles a rare genetic disorder called Sanfilippo Syndrome, for which there is no cure. Children with Sanfilippo Syndrome are missing an essential enzyme that breaks down sugars, resulting in a build-up in the brain and other organs, ultimately stopping development. Most children do not live to adulthood.

Instead of succumbing to the disease however, Elisa’s parents Randall and Elisabeth chose the road less traveled and began a foundation to share the story of their daughter and spread awareness about Sanfilippo Syndrome. Entitled “A Life For Elisa” the ultimate goal of the foundation is to raise money to fund research and hopefully find a cure – it is a daily crusade that the Linton family willingly charts. Siblings Jessica and Connor, along with their parents, have devoted their lives to helping Elisa. Their community of friends, medical specialists and local businesses have all joined in, surrounding the family with love and financial support, helping to raise over $3 million for research since 1999.

For the Linton’s, the dream of finding a cure for Sanfilippo is what drove them to take on the grueling 22km half-marathon.

Elisa’s story is truly inspirational. That being said, it is only one example of the kind of motivation and inspiration that drives thousands of individuals to participate in the Toronto Marathon each year.

Fundraising plays an integral part in the Toronto Marathon. In 2008 participants raised over $4 million for cancer care and research at the Princess Margaret Hospital, bringing the total to over $10 million since 1995. Furthermore, millions have been raised for other charitable partners in addition to charities chosen by participants.

Yes, at the most rudimentary level, The Toronto Marathon is about running. However, the act of running, in-and-of-itself, is only the beginning. What represents the true spirit of marathon running?

For the answer: look to the cardboard.

Life as a List

Okay, I know what your thinking. And no, I did not watch "The Bucket List" this weekend. In fact, I have yet to see the movie!

This list - my own personal bucket list - is something I have been tinkering with for awhile. I had to stop myself at 40. Looks like I've got some living to do!





1. Skydive.
2. Learn to speak a foreign language and make sure you use it.
3. Watch the launch of the space shuttle.
4. Tell someone the story of your life, sparing no details.
5. Own a room with a view.
6. Buy a round-the-world air ticket and a rucksack, and run away.
7. Grow a beard and leave it for at least a month.
8. Give your mother a dozen red roses and tell her you love her.
9. Send a message in a bottle.
10. Learn not to say yes when you really mean no.
11. Surf and snowboard in the same day.
12. Be the boss.
13. Fall in love.
14. Sit on a jury.
15. Write the novel you know you have inside you.
16. Go to Walden Pond and read Thoreau while drifting in a canoe.
17. Drink beer at Oktoberfest in Munich.
18. Be someone's mentor.
19. Shower in a waterfall.
20. Drive across America from coast to coast.
21. Make a complete and utter fool of yourself.
22. Own one very expensive but absolutely wonderful business suit.
23. Go wild in Rio during Carnival.
24. Spend a whole day reading a great novel.
25. Drive the Autobahn.
26. Find a job you love.
27. Spend Christmas on the beach drinking pina coladas.
28. Overcome your fear of failure.
29. Raft through the Grand Canyon.
30. Buy your own house –make it into exactly what you want.
31. Grow a garden.
32. Accept yourself for who you are.
33. Scuba dive off Australia's Great Barrier Reef.
34. Go up in a hot-air balloon.
35. Create your Family Tree.
36. Make a hole-in-one.
37. Run a marathon.
38. Look into your child's eyes, see yourself, and smile.
39. Accept your weaknesses.
40. Do not limit myself to this list.

The Power of Sport

Character is that which reveals moral purpose, exposing the class of things a man chooses or avoids.

-Aristotle

Sport has often been considered “the great equalizer”. For those who partake, every game becomes an opportunity to measure ones self. Often these measurements are comparative: man to man, player to player. However, these measurements can also take place at the individual level.

Sport demands courage, determination, strength, leadership, willpower and respect. It follows, therefore, that the spirit of sport is embedded not in rivalry or competition. Instead, the true spirit of sport is being able to measure your self against your own potential.

Success is not always directly related to victory; it can, in fact, take many forms.

Much of what can be said about sport can also be said about life-in-general. Whether in life or in sport, your true rival is never your opponent; it is, instead, yourself. Participation in either is always about something more then winning. It is about persevering; defining your own standards and then defying them.

For those of us who live with disease, sport offers something more. Sport becomes therapeutic; a remedy for the body and the mind. By simply participating we are, in some way, defying the odds. It is, therefore, the act of participation that should be celebrated.

Many CF patients shy away from sport because of the obvious physical disadvantages that are associated with the disease. In many ways, this is understandable; after all, Cystic Fibrosis can make the most mundane, rudimentary task difficult and unpleasant. Nevertheless, CF patients who refuse to participate in sport are truly missing out on an invaluable experience.

Not only does participation result in a healthier life for anyone who partakes; but it also represents a certain kind of resistance against the inevitable. Granted, not every CF patient has the ability to participate in competitive sport. Nevertheless, by staying active and recognizing the importance of a positive attitude CF patient’s can maintain a level of control over a disease that quite often seems uncontrollable.

No Man Is An Island

Living with CF can often be overwhelming. The disease takes its toll both emotionally and physically. To survive is to fight; however, we do not fight alone.

Behind every patient is an army of friends, family members, doctors, and nurses. This support system makes living with CF bearable. After all, we, as patients, need all the love and support we can get.

There are times, however, when we - as patients - choose to withhold certain things from our support team. CF patients do this, not out of resentment, fear, or disdain, but out of love. We understand how difficult it is to stand idly-by and watch a loved one suffer. We understand how frustrating it can be to feel totally and completely powerless. We understand how mentally antagonizing it can be to watch a son, daughter, girlfriend, boyfriend, wife, or husband literally fight for their life. We understand your anxieties and we understand your fears.

This understanding often leads to a harsh realization: we, as CF patients, are responsible for your pain.

You cry for us, you pray for us, you care for us, and you fear for us. You are, in many ways, more affected by the disease then we are.

As a CF survivor, I can say that the most frustrating part about living with CF is having to watch my family, friends, and loved ones deal with the disease. Nothing pains me more then knowing that my sickness impacts so many people on so many levels. I fully understand and appreciate their concern, their love and their fear; however, I sometimes wish that I could remove them from the situation. This is why I sometimes keep certain things to myself. It is not selfishness, it is not insensitivity and it is not a defense mechanism. It is simply love.

Nothing pains us more then hurting the ones we love. Unfortunately, surviving CF often entails doing just that; relying on other people, sharing our pain, and inflicting hurt (albeit unintentionally) on the ones we care about. We, as CF patients, deal with this complex paradox everyday; and, as a result, we sometimes hold back.

We hold back to protect you, to distance you from the inevitable. We hold back in an attempt to guard you from the harshness of the situation at hand. We hold back to shelter you from pain and anguish; from strife and sadness.

We hold back because we love you.

We hold back because we care.

No man is and island; yet we all want to make it on our own.

Learning The Hard Way

CF patients fare quite well at accepting negativity. However, there are certain truths that are especially difficult to acknowledge. Infertility is one of these truths. Although men who have CF enjoy normal sex lives, they are almost always (99 per cent of the time) infertile due to an abnormality of the vas deferens. This daunting reality represents yet another hurdle that individuals living with Cystic Fibrosis are forced to overcome.

Unfortunately, most young men with CF move from childhood into adolescence without counseling regarding their almost certain infertility. This signifies a significant problem with CF patient care. One of the most staggering moments of my life occurred the day that my high school girlfriend confronted me about my fertility. It was the first time anyone had mentioned the notion to me. As a 16-year old male I literally had never been told that I would be unable to have children.

What angered me was not so much the idea of my infertility, but the idea that such an important issue had been effectively concealed by my family, my doctors, my nurses, and my counselors. Granted, the conversation would not have been an easy one to initiate; but nevertheless, I feel that CF patients should be informed of this harsh reality.

It was not until I transitioned from the pediatric clinic to the adult clinic that I was formally briefed regarding the issue. However, by that time I was nearly 19-years old. I had already been forced to deal with the issue on my own.

It is my opinion that the issue of infertility should be discussed with CF patients BEFORE they become sexually active. It is an issue that must be discussed frankly but sympathetically. Young male patients should also be informed that all other aspects of their sexual function are completely normal.

In fact, despite the fact that males with CF suffer from an abnormality of the vas deferens, they do produce sperm. It is, therefore, possible to aspirate sperm from the epididymis and use this for in-vitro fertilization. However, the technique is fairly limited; with a statistical success rate of only 20 to 30 per cent.

Unfortunately, the procedure is also complicated by the fact that CF is genetically transmitted. In other words, children parented by a father with CF will almost always end up suffering from the disease.

As medical science progresses new options are arising. However, the real problem lies in how young males come to learn about their infertility. It is my sincere hope that changes will be made to current practices that view infertility as an issue to be circumvented. As with every other area of the disease, we – as patients – can only begin coping after we accept the true nature of what it is that we are dealing with.

A Blessing In Disguise

Cystic Fibrosis is negative. As most of you probably know by now, the effects of the disease are devastating. Yes, CF is negative. But in many ways, it is also a blessing.

As a CF patient I have experienced the very best of days and the very worst of days. I know how it feels to accomplish something despite having CF. I also know how it feels to be unable to accomplish something because of CF. I have experienced life on both sides of the spectrum. There are days when my health has absolutely no bearing on my life; however, there are also days when simply breathing represents the most arduous of tasks.

I have often said, you cannot begin to understand how lucky you are until you are forced to experience how quickly that luck can fade.

CF is a blessing because of how it compels us to act. Those who live with the disease have a greater appreciation of life then those who do not. CF induces forced reflection; it provokes us to appreciate the good days and to always remember that no matter how badly things may appear – they can always be worse.

Last summer, during one of my hospitalizations, I befriend a group of fellow CF patients who were also being forced to spend their summer vacations on the 8th floor of St. Michael’s Hospital. In between our treatments, the four of us would play cards, watch television and chat casually about life. During one of our conversations I explained that my lung function had fallen from nearly 100 per cent to below 50 per cent – hence my hospitalization. Shawn, a fellow Cfer let out a reluctant giggle. “50 per cent,” he said, “my lung function hasn’t been that high in nearly five years!”

Later I learned that Shawn was on the donor list. At 28-years old his lungs had deteriorated to the point where his only chance of survival was to undergo a double lung transplant. Suddenly, I felt a whole lot better about my own personal situation.

I left the hospital that summer knowing that Shawn and my other friends might not. As I said my goodbyes, I could tell that they were happy to see me go. They would take solace in my victory. My recovery meant something to them; it inspired them and gave them hope. I know, because during my stay I too watched other patient’s come and go.

When you are hospitalized you want to go home. You yearn for your own bed, the scent of your pillow, the familiar creek of your bedroom floor.

Each time that I watched a fellow Cfer walk out of the clinic I felt both saddened and overjoyed. The post-recovery goodbyes were always bittersweet. The healthy patient, eager to get back to some sense of normalcy, would wish the unhealthy patient’s the best of luck. A word or two of advice or inspiration; often followed by a handshake, hug, or the occasional tear. It is the reality of life in a hospital. Recovery comes to some, while at the same time evading others.

Those of us who are lucky enough to go home share a serious responsibility: we must live not only for ourselves, but also for those whose lives are on hold. We live vicariously through each other. It is a method of coping, but it is also a way of defeating a disease that often seems undefeatable.

These experiences are what bond CF patients together. We constitute a unique community of like-minded individuals who choose to fight this devastating disease together. We share our pain, our anger, our frustration and our sadness. But we also share our victories and our accomplishments.

Although we are sick, we understand that we are lucky. We see the world in a more holistic manner. We acknowledge and appreciate the small successes. We remain positive and optimistic in the face of sheer negativity. We LIVE each day to its fullest potential. We avoid getting bent out of shape over the minor frustrations of day-to-day life. We share fear, pain, agony and defeat; but we also share in the happiness that comes along with overcoming CF.

Yes, CF is negative. But in the grand scheme of things, CF makes us better people.

The Gray Area

Independence has come to be seen as one of the most endearing qualities a person can exhibit. Self-sufficiency is considered to be not only admirable, but necessary for success. Freedom, liberty, autonomy; all of the qualities that we – in the western world - have come to respect and desire are directly related to ones ability to live independently.

With such an emphasis on independence it is no wonder that individuals living with life-threatening diseases often experience high levels of strain. All too often, life demands one way-of-being while society demands another. Life asks for rest and rehabilitation while society asks for commitment, dedication, and time. Life asks for patience while society asks for results.

CF patients live in the gray area between life and society.

One the one hand, we are constantly aware of the expectations that society sets out for us. Get a job, get married, start a family, etc. On the other hand, we are forced to accept the fact that life with CF often limits our potential to reach these expectations.

I want to work; but I am not always able to balance my career and my health. I want to get married; but at the same time, I am forced to consider the fact that one day I will inevitably leave my wife behind. I want to start a family; but I do not want my children to grow up without a father. These are the considerations that make even the most basic decisions so difficult.

We, as CF patients, are completely and utterly dependent. The disease robs us of our ability to live self-sufficiently. Our pills, our masks, our puffers, our doctors, our clinic appointments - each one is a blow to our autonomy.

Many of us long to live recklessly. To hastily and thoughtlessly navigate through life. To make decisions based on needs and desires. Unfortunately, this kind of carefree lifestyle is not conducive to life with CF. Each decision, no matter how big or how small, is carefully considered. The pros and cons must be weighed, the outcomes must be analyzed and the risks must be justified. The demands of life are contrasted against the demands of society.

Want to think like a CF patient? Ask yourself, would I be where I am today if there was no possibility of a tomorrow?

Welcome to life with CF.