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.

Adrenalin Anyone?

It's December - just over three weeks until Christmas. My goal, as mentioned previously, is to be "prednisone free" by the 25th.

Prednisone is a steroidal anti-inflammatory. For me, the drug works to decrease inflammation in my lungs and airways. The problem is - it's terrible for you. Long term side effects include everything from osteoporosis to liver and kidney disease. So here I am, faced with a frustrating paradox.

What to do?

a) Feel great while popping prednisone like pez.
b)Feel like shit but be prednisone free.

I have decided that getting off the drug is the way to go. Unfortunately, I have been trying to wean off of it for nearly a year and a half. At the moment I am taking 12.5mg a day.

The biggest issue.....I'm a freakin zombie.

Prednisone gives you adrenalin; and, therefore, your adrenal glands go into hibernation while you are on the drug. As a result, your body stops producing adrenalin naturally. The problem: as I wean off the drug my body is literally adrenalin deprived.

Until my body decides to start pumping out adrenalin again I'll be living off coffee and cat naps.

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.

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.

The Statistics

So much of what we do in today’s society revolves around numbers. Numbers can define us, restrict us, classify us and motivate us. Every one of us is subjected, in one way or another, to this reality. Statistics dominate our modern world. From business to pleasure, every part of this world has become typified numerically. CF patients are no exception. Each day we are plagued with the notion that one day we too may fall victim to the statistics.

As of 2002, the median age of survival for Canadians with cystic fibrosis was 37 years of age. By numerically predicting the life expectancy of those people living with CF an expiry date has effectively been set for an entire population of sick individuals. I am by no means suggesting that this data should no longer be calculated or kept track of. It provides researchers with important information while at the same time allowing them to track the progress of certain kinds of advancements in medical therapy. However, despite these intentions I can say with some certainty that every CF patient has, at some point in time, given at least some thought to the harsh reality that this number represents.

As I approach my 24th birthday I am quite aware of this statistic. It effects almost every decision that I make in my young life. The decision to start a serious relationship, to marry, to start a family, to buy a house, or to pursue a career; all of these decisions must be made with some serious consideration in mind.

For most of my childhood I never saw myself as a typical CF patient. I knew that I had CF, and I knew that it had the potential to make me very sick; however, I was unwilling to except that the disease could ever get the best of me. It wasn’t until the summer of 2007 that I first came to the realization that maybe I too was just another CF statistic. It was that summer that the numbers finally caught up to me. What began as a mild chest infection skyrocketed into one of the most frightening experiences of my life. My lung function (FEV1), which is a measure of my ability to take in and exhale oxygen, dropped from 100% to nearly 50% in a few short weeks.

After a course of oral antibiotics failed to remedy the situation I was forced to undergo rigorous course of I.V. antibiotics which were pumped into my veins 24 hours a day for 3 weeks. After the 3-week cycle the Doctors were forced to stop the antibiotic treatment due to the fact that the high doses were severely impacting my kidney and liver function. The I.V. treatment had also caused me to suffer from some serious blood clotting in my right arm that meant I was forced to ingest blood thinners on a daily basis. As a last attempt I was put on an I.V. course of prednisone – a steroidal anti-inflammatory often used to treat cancer patients. Finally, after 3 agonizing months my lung function began to increase.

I slowly regained the strength that I had lost over the three-month ordeal. For my-self, my friends and my family, the situation was an eye-opener. Although everyone knew that I had CF, the severity of the disease had never reared its ugly head until the summer of 2007. I no longer felt invincible. I was forced to accept the fact that my CF could kill me. It was a notion that I had never bothered to entertain in the past – after all, 22-year-old men don’t often spend much time worrying about their mortality.

The road to recovery also presented some unexpected obstacles. The prednisone I was ingesting on a daily basis allowed me to breathe without having to experience very much wheezing, couching, or crackling in my lungs. However, the drug itself is not recommended for long term use, and as such, my doctors recommended that I slowly wean off of it. Unfortunately, after reducing my dosages my doctors and I soon realized that I had developed a dependency for the drug. As soon as my dosage was tapered below a certain percentage my lung function began to drop and the unwanted symptoms immediately returned.

Even today, as I write this, I continue to take a small dosage of prednisone to control my symptoms. It is this kind of medical reliance that often becomes a grim reality for many individuals living with CF.

I'm often asked, "what is the most difficult part of dealing with CF"?

The answer: dependency.

The inability to exist self-sufficiently. That is what causes us CFer's the most frustration.

Life With CF: A Battle For Survival

As any CF patient will tell you, living with the disease means living with unpredictability. Daily routines, therapies, and medication regimes are frequently altered in an attempt to combat the further deterioration of ones health. Lung infections come and go, bringing with them hospitalizations as well as the daily ingestion of both oral and I.V. anti-biotics. Pills by the handful are often ingested - Prednisone, Ciprofloxacin, Bactrim, Septra, Cotrim, Cloxacylin, and Pancreatic Enzymes – each one with a specific purpose. Puffers and nebulizers adorn the bedside tables of those who live with the disease, each one an integral part of a CF patients daily therapy routine.

However, the most difficult constraint is often the clock. Nebulizer treatments, often taken three times daily, can last over 30 minutes per treatment. Pep-masks and other forms of daily physiotherapy also take 30 to 45 minutes a day. The impending result is a daily schedule that is severely monopolized by the rigors of CF therapy. It follows, therefore, that life with CF entails sacrifice; we are often forced to neglect our friends and loved ones, our jobs, our schoolwork, our primary responsibilities, in an attempt to remain healthy. The sacrifices we make are often difficult, but they are almost always more favorable then the impending alternative.

Advances in medical science and improved treatment protocols have truly changed the lives of those individuals who are forced to battle CF. In 1960 a child born with Cystic Fibrosis rarely lived four years. Today, half of all Canadians with CF are expected to live into their late-thirties and beyond. These developments mean that CF patients are becoming more and more likely to enroll in post secondary education, pursue careers, get married, and have children. The quality of life for those living with CF has also been significantly improved by the recent mapping of the human genome and the discovery of the CF gene; both of which have had significant impacts on new research and treatment surrounding the disease. Indeed, the pace of CF science suggests that there is good reason to feel optimistic about the future. However, although this is encouraging news, many of us are faced with the daunting reality that a cure will inevitably come too late.

Despite being faced with the hardships and struggles associated with the disease, CF patients remain incredibly resilient and determined. For us, the name of the game is - and has always been - survival. The drive to hold on, to prevail, to fight, is what gets us through the difficult times. The ability to simply “hang on” until that magical day when a cure is found is what compels each and every CF patient to defy the odds and to rebel against their fate. Yes, life with Cystic Fibrosis can be complex and often disheartening. However, I have never met a CF patient who has chosen to dwell on these negatives. I must say, collectively, we are a fairly stubborn bunch.

That stubbornness, the unrelenting need to overcome, is a characteristic that can be found in many people who suffer from life threatening illnesses. It is a force that can not fully be described - only experienced. I suppose in many respects, it is a form of desperation, a refusal to give into the inevitable and expected. This unexplainable drive brings us together; not just CF patients, but anyone who has battled a life threatening illness, together we constitute a community of survivors. Our situations are all similar; we are forced to endure many of the same painful experiences and, at the very least; we all share an understanding of the daily struggles with pain, humiliation, feelings of defeat, and devastation.

It is this community of survivors, this web of motivation, which breeds strength and courage. Those of us who find ourselves struggling mustn’t look any further then this community to find our own personal source of inspiration. We draw on the successes of others, and we overcome knowing that others before us have faced the same obstacles – and succeeded. It is this community that encourages every sick individual to draw positives out of their negative situations. To complain, to grumble, and to gripe is to allow your sickness to get the better of you. Instead, those who live with CF protest, they stand up against the disease that threatens to end their existence. They fight, they battle and they struggle; they exchange blows with their enemy, sometimes prevailing, and other times being forced into submission. However, the outcome is not always as important as the fight itself. The decision to clash with your demons is what separates the true survivors from those who merely accept their looming destiny. Refusing to give up and refusing to give in is what constitutes a true survivor.

From the Inside Out

Cystic Fibrosis affects one in every 3,600 people born in Canada. My name is Erick Bauer; and I am one of those people. At the age of five I was diagnosed, and from that day forward every facet of my life has revolved around the disease. From the rigorous therapy to the emotional struggles involving infertility and mortality, CF has found its way into all the corners of my life.

My name is Erick, and this is my story.

By most accounts I am a typical 23-year old. I recently graduated from university, I have a girlfriend that I love and a part time job that I do not. I am an avid sports fan and a relatively skilled amateur athlete. I enjoy playing hockey, running, cycling, and when the situation calls for it, sitting on a patio with an ice cold adult beverage. I have a great group of friends and a Jeep that I spend far too much money on. Yes, by most accounts I am a typical 23-year old. However, there is one thing that differentiates me from most other typical 23-year olds: I’m dying.

At first glance I don’t appear to be sick. In fact, most would assume that I am in exceptional physical condition. My five-day-a-week exercise regime allows me to maintain a strong athletic physique. I am of average height and weight, and I bear no tell-tale signs of illness. Most would not equate my appearance with that of a fatally ill individual, yet with each day that passes my lungs grow weaker and weaker as Cystic Fibrosis carry’s on with its relentless attempt to end my life.

The majority of CF patients are like me; our illness disguised by our ostensibly healthy appearances. Our polished exteriors are mere façades that mask the true nature of our existence. Each of us is dying and each of us can feel it. Cystic Fibrosis works from the inside out; therefore, CF patients do not take on the appearance of being fatally ill until the disease enters its most severe stages. Because CF patients are indistinguishable amongst the greater population, the disease remains plagued by ambiguity and misunderstanding.

For most of us, explaining the intricacies of our sickness is an everyday occurrence. Misconceptions surrounding CF often leave people confused and disillusioned; I cannot count the number of times that I have had to explain to people that I do NOT have a severe form of asthma or that they need not worry about contracting some form of my disorder. The mis-information surrounding CF constitutes a real and undeniable obstacle for those people who are committed to curing this devastating disease. The harsh realization is that most people simply do not know enough about CF to consciously make an effort to fight against it. The irony is that Cystic Fibrosis is the most common, fatal, genetic disorder affecting young Canadians’ today and yet most people lack even a basic understanding of the disease.

Painted Rust

Hey everyone, and welcome to Painted Rust. The postings that follow represent my attempt to cope with Cystic Fibrosis.

Living with a potentially fatal disease means living with constant emotional strain. The deterioration of health is often followed by the deterioration of will, and, in turn, a sense of powerlessness that cannot be described - only experienced.

Such a devastating disease is intrinsically intertwined with pain and struggle. However, those living with CF learn to embrace the positives while disregarding the negatives. Cystic Fibrosis, therefore, serves as a reminder to live life to its fullest. To cherish the time we have with friends, family and loved ones.

Selfishly, I created this blog for my own personal benefit. My sanity depends on it. My hope is that these postings will provide me with a means of expression. A forum with which to share my frustrations, struggles, pains and victories. Yes, this blog is for me.

But it is also for you: the reader. If nothing else, I hope that these writings enlighten and educate. Cystic Fibrosis is a disease that is plagued by both ambiguity and misunderstanding. I urge you, the reader, to seek out more information about CF. Educate yourself, get involved, and make a difference.

Most importantly; get the message. Yes, CF represents negativity. But it also represents all that is precious in life. Accept these stories for what they are: tales of courage, determination, will power, friendship and love. My hope is that each one of you takes something away from these writings. Acknowledge the negativity in your own life, but never let it limit your potential. Live, laugh, and love – it’s the only way to exist.