Get Me Off This Freakin' Drug

Well folks, here I am a year-and-a-half after starting my frist course of prednisone. This has turned out to be a long ass weaning process.

My goal: to get off this freakin' drug by Christmas.

Current dosage: 20 mg

Current status: no weezing, coughing, gasping or crackling.....booooooya!

Tune in next week for another exciting update!

A Moment to Breathe

Life has been frantic lately; and I love it.

Why?

It’s quite simple really. As a CF patient, being able to live a frantic, hectic, disordered life, says a lot about ones health. We, as a collective group, tend to cherish this kind of chaos. It is a distraction from the day-to-day monotony that we are all forced to accept.

Life with Cystic Fibrosis can be painfully predictable. CF patients are victims of routine and regularity. Pills, puffers and medications must be taken on time. Clinic appointments must be scheduled and attended regularly. Treatments must be preformed, altered, and then preformed again. It is an excruciatingly dull existence.

That being said, there are times when our health co-operates. The tightness eases, the pain subsides, the coughing wanes; and, for a moment, we can truly enjoy life.

Yes, times are good.

Work is uninteresting, school is un-engaging, my bank account is empty, the Leafs can’t seem to string together more then two wins in a row and the weather is miserable. But, as any CF patient will tell you, when you can breathe – nothing else seems to matter.

My only hope is that I can be plagued by these ostensible “problems” a little while longer.

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.