Blogging for a Purpose

Lock, load, aim, shoot…..blank.

Maybe I can’t perform under pressure, or maybe I just don’t have a strong enough passion for social media. Either way, I’m just not down with talking about the social media landscape today.

So let me start by apologizing to those of you who expect a well crafted “PR” related blog posting. Quite frankly, I’m not in the mood.

What makes my blog unique? I blog, I write, I rant, I rave; however, there is one thing that separates me from the pack.

Malcom Gladwell’s book, Outliers: The Story of Success, suggests that an individual must have 10,000 hours in a specific area to be considered an expert. Next March I will be celebrating my 24 birthday. Do the math; since my diagnosis I’ve been living with CF for over 166,440 hours. More accurately, I have been living with Cystic Fibrosis for over 210,240 hours; albeit, my diagnosis did not occur until I was 5-years-old.

What qualifies me to write about Cystic Fibrosis? It’s quite simple – I know the disease. More accurately, I live the disease day in and day out.

If 10,000 hours makes you an expert, then 200,000 + hours must make me an absolute connoisseur!

I urge you to take note of my musings; because, quite frankly, I write for a reason.

Reality Check

The Canadian Cystic Fibrosis Foundation recently released its latest advertising campaign – Drowning on the Inside. In many ways, the campaign is a form of shock advertising; the ads are controversial, disturbing and explicit. However, they are also a very accurate portrayal of what life with Cystic Fibrosis can sometimes feel like.

One video features a young child submerged in a pool of water, while another shows a child struggling to suck air through a straw.

What makes these ads so shocking?

Well, first of all, they are deliberately startling; they demonstrate the day-to-day realities of CF in a way that connects to almost anyone. Second, they all feature young children; a move that not only draws attention to the ads, but also accurately portrays the demographic most affected by the disease.

Some critics have argued that the new ad campaign is a blatant attempt by the CCFF to generate support for its cause through the inappropriate use of high impact scare tactics.

Ironically, these highly controversial ads are a breath of fresh air (no pun intended) for CF patients; most of whom often have a hard time describing how the disease truly affects them.

I would argue that the “Drowning on the Inside” campaign is no more explicit than any ad campaign released by M.A.D.D or Smoke Free Ontario. So for those of you who are offended by these ads, I ask you to reconsider the root of your disdain.

What makes these ads so shocking?

It’s not the images, the use of young actors, or the explicit analogies. These ads are shocking for one reason: they represent a truth that has never before been so accurately portrayed.


Note: To check out the rest of the “Drowning on the Inside” campaign, visit:

The Canadian Cystic Fibrosis Foudation

Bridging the Gap

Well it has certainly been a while since my last post. Between school, work, Friends For Life and the move into my new place, life has been pretty damn hectic lately! My inability to post was also directly related to the fact that I was stuck in a new house with no internet for nearly a week and a half – talk about feeling socially disconnected.

Nevertheless, the move is done and over with, the internet has been hooked up and life is beginning to regain some sense of normality again.

One of the first things I did after the Bell technician left my house was jump on Facebook to check a week’s worth of unread messages. After sifting through a plethora of evites, birthday notifications and embarrassing picture postings, I stumbled upon a message from a young lady who I did not recognize.

As I read on, I learned that she was a Cystic Fibrosis patient and that she had recently read an article that I had published in a quarterly CF publication called Circle of Friends.

The article was about a serious lung infection that I had suffered in the summer of 2007. From May until August, 2007, I battled a severe bacteria that dropped my lung function over 50 per cent and landed me in a hospital bed for a number of weeks. The article talked about the experience and how triathlon played a large role in my recuperation.

As it turned out, my new Facebook friend had stumbled upon the article and, as a fellow CFer, was inspired by what she read.

Her message talked about how she could relate to my article because she too was beginning to realize the potential limitations that CF can impose upon its victims. However, she also vowed to never let CF limit her ability to live a healthy, active, normal life.

Unfortunately, CF patients are not encouraged to associate with one another. This is because we often carry potentially harmful bacteria that can be fatal if transmitted to the lungs of other CF patients. Thus, in the interest of our health, we – as CFers – are encouraged to avoid contact with one another.

For year’s I have felt that this inability to socialize with other patients presents a real problem for those of us living with the disease. After all, who better understands the trials and tribulations of life with CF than a CF patient? I’ve often felt that, given the chance, I could make a difference in the life of other CF patients – just as they could make a difference in my life. Unfortunately, for as long as I can remember, the health risks associated with this kind of intimate contact made this dream rather unachievable.

That is, until now. The advent of social media and web 2.0 has transformed the way that people communicate and connect. For CF patients, social media represents a way in which we can share, bond and unite in the fight against Cystic Fibrosis.

I was happy that my writing had, in some small way, made a difference in someone’s life. However, I was absolutely thrilled about the fact that I was able to talk with another CF patient in a way that never would have been possible ten years prior.

So, for all of you who may question the importance of social media, I ask you to consider this example. The internet offers us, as a virtual community, an opportunity to come together, to connect and to develop relationships that simply could not exist otherwise.

Family Life

After reading a recent blog post about the elusive “f” word, I was inspired to publish my own piece about the irony of CF and family life. I feel that some people simply do not understand the grasp that CF has on my life. One of the areas that has been most affected by the disease is my personal life.

To most people, having a family is something that is taken for granted. It is a natural part of life, a right of passage if you will. However, to those of us living with CF, having a family represents something much more. It is a dream, a desire, an underlying notion that consumes our every decision. There is an inherent selfishness that saturates the idea. Abandonment, desertion, rejection; all of these idea’s comes into play when a CF patient decides to start a family. After all, we will, at some point in time, be forced to leave our loved ones behind. That being said, don’t we all – healthy or unhealthy – face the same predicament?

In my opinion, there is only one factor that should be considered when an individual decides to start a family: love. All other barriers, all other hurdles and all other difficulties can be overcome if love exists.

Part of living with CF is living with limitation; however, there are some things that we must not let the disease affect.

A Day in the Life

Cystic Fibrosis is embedded with ambiguity and misunderstanding. The myths and misinformation that surround the disease are abundant. As a CF patient I try my best to misspell these half-truths. In this post, I thought I would take a moment to share some of the ways that CF impacts my day-to-day life.

Most students roll out of bed with just enough time to make it to class. I, on the other hand, have been forced to adopt a more demanding morning routine. Every day, I am up at 6:00 a.m. to begin my daily battle with cystic fibrosis.

Each morning I awaken to a harsh reality. After 6 or 7 hours of sedentary inactivity, my lungs are almost always filled with a thick lining of mucus that makes it very difficult for me to breathe. This discomfort is one that every CF patient knows all too well.

I begin and end my day with 60 minutes of treatments: 30 minutes of PEP (positive expiratory pressure) mask therapy, a form of chest physiotherapy to help loosen the mucus in my lungs, and 30 minutes of inhaled medications through a nebulizer. Luckily for me, I am able to perform half of this therapy while in the car while on my way to school.

In addition to physiotherapy, I take pancreatic enzymes with every meal and snack to help me digest and absorb the nutrients in food. These, along with the many oral antibiotics and steroids that I must take, bring my total ingestion of pills to about 30 a day. Not to mention the variety of puffers I use in the morning and evening to help keep my airways open.

In total, my CF regime consumes between 2 – 3 hours of each day. Needless to say, as a CF patient you learn to prioritize and manage your time effectively.

The treatment protocol is certainly both strenuous and time consuming; however, it is a necessity, not an option. As a 23-year-old, I have come to accept that I owe my life to the medical treatments that I have received, and continue to receive on a daily basis. Quite frankly, fighting CF is a gigantic pain in my ass, but it is that fight that will keep me alive until the day that a cure is found.

Carleton University Students Continue to Shine

The Canadian Cystic Fibrosis Foundation (CCFF) applauds the decision of the Carleton University Students’ Association (CUSA) on Monday night to continue its long-standing partnership with Shinerama. Last week, the Association voted to cancel the annual fundraiser at Carleton University. After many students expressed their concern over the vote, a second motion to re-instate Shinerama was put forth. At yesterday’s meeting, the new motion was passed, setting the stage for another Shinerama campaign in 2009 at the university. “The students at Carleton are leaders in the fight against cystic fibrosis,” said Cathleen Morrison, Chief Executive Officer of the Canadian Cystic Fibrosis Foundation.

“We are delighted that CUSA chose to continue support for CF research and care. We look forward to working with Carleton students on a successful Shinerama 2009.”

Shinerama is Canada’s largest post-secondary fundraiser, involving students at approximately 65 university and college campuses across Canada, annually. It began in 1964 as a shoe-shining campaign, and has grown to include a wide variety of community and campus-based events under the Shinerama banner. Carleton University has participated in Shinerama for more than 25 years and has raised close to $1 million. This year alone, the school raised $40,000 in support of the work of the CCFF. “Shinerama is an excellent example of young Canadians helping other young Canadians,” added Morrison.


“We’re grateful to all students across the country who have helped to make great strides in the fight against cystic fibrosis.”


This Canada-wide student campaign celebrates its 45th anniversary in 2009. About CF and the Canadian Cystic Fibrosis Foundation Cystic fibrosis, which affects the lungs and the digestive system, is the most common, fatal, genetic disease affecting Canadian children and young adults. In the digestive tract, CF blocks the absorption of adequate nutrients from food. In the lungs, the effects of the disease are most devastating; and with time, respiratory problems become increasingly severe. Ultimately, most CF deaths are due to lung disease. The Canadian Cystic Fibrosis Foundation is a Canada-wide health charity, with 50 volunteer chapters, that funds CF research and care. In 2008, the Foundation is supporting more than 50 research projects, which are exploring all aspects of the CF puzzle; from investigating new methods of fighting infection and inflammation in the lungs, to finding new therapies that target the basic defect at a cellular level.


For more information, visit www.cysticfibrosis.ca.

Rant

Let me get one thing straight - I do appreciate social media. I believe that it facilitates interactive dialogue and intellectual stimulation; however, I have a bone to pick.

Too many of us are blogging for brownie points. Let's face it, we aren't all social media gurus. So why waste our time writing about something we really don't care about!?!?!?!

I write about CF becuase it consumes me. It makes me who I am...and I accept that. Cystic Fibrosis is MY story, however, we all have a story to tell.

That being said, take some initiative and tell it!

Blogging shouldn't be a means to an end. Regardless of what your future boss might tell you, writing shouldn't always be about a pay check. Instead, it should be an outlet. Write because you have something to share, something to dispute, something to challenge.

Remember, all great thinkers share one thing in common: the intrinsic ability to use words effectively. Writing is simply not effective if it is not from the heart.

Blogging should be about self observation, reflection and introspection. Challenge yourself to move away from convention. To hell with public opinion, education, religion, society.....write for a reason....write for yourself.

Multum in parvo -much from little.

Enjoy the simple pleasures that come from a well crafted rant.

We are so preoccupied with the cares and worries of others that we forget to acknowledge and appreciate life's most precious gifts.

A sunset, a smile, a friend, an undying love....these are the things that we should be writing about. And for the record, would it kill us to ditch the keyboard and pick up a pen?

Ink has become a lost art.

Pick up a Bic, pick up a piece of paper and begin. Write for yourself. Write for a reason.

As Aristotle once said, "We are what we repeatedly do. Excellence is not an act, but a habit."

Practice the art of strong writing....not the art of effective ass kissing.