The Cough

When you've been living with a chronic lung disease your entire life you start to notice patterns in the way that people interact with you. Some of them are positive, some are negative, and some are downright humorous.

One common pattern is the way in which people have come to recognize me. After having known someone for a long period of time you can often recognize their presence in a room by simply hearing their voice,heir laughter, or even the subtleties in their footsteps as they walk across a hardwood floor. I too have found that people have come to recognize me in a unique way. 

For years my best friends and close family members have claimed that they can identify me immediately through my cough. Whether we are in a grocery store, a restaurant or at a house party, my cough has become a way for people to locate me quickly and easily. After moving out of my parents house my mom told me that the one thing she immediately noticed was how quiet the place was without my constant hacking (that and the fact that groceries seemed to last much longer in the fridge than they did when I was around). 

Stefanie uses my cough to track me down whenever we get separated in a mall (I usually wonder off to find a sporting goods store) or supermarket (you can most always find me by the butchers counter). Even my co-workers have come to identify me in this way. I'll never forget the first time my company president belted out "good morning Erick" after I had coughed while waiting for a document to print near her office. She couldn't see me, but she clearly knew I was there. 

The irony in this is that for years I made a conscious effort to avoid coughing in public. I didn't want people to know I was sick. I didn't want them to have sympathy for me or to judge me because of my CF. I also grew tired of getting dirty looks from strangers who clearly wanted me to know that they were disgusted by the fact that I would wonder out in public with such an awful case of bronchitis or pneumonia - didn't I know that those conditions were contagious!?!?

University lecture halls were always the worst. Having to suck back the urge to cough as the mucus built up in my lungs over a three hour class was painful and frustrating; but it was far better than embarrassing myself by interrupting a group of 500 students and pissing off the professor.

My attempt to lead a cough free life prevailed for years. Then, at some point, I had a change of heart. I don't recall exactly when this happened and I can't remember exactly why my patterns of thinking changed, but for whatever reason I finally came to the conclusion that I didn't give a shit about what people thought.

I have CF.
I cough.
Deal with it.

Not only did this approach allow me to physically function properly, but it also changed the way I interacted with people on a daily basis. For better or for worse I no longer had time or patience for those who judged me. I began to take criticism in stride - I wasn't perfect and I never would be. I began judging myself by my own standards, and not those that I ostensibly assumed others held for me. I was living my own life...running my own race.

To this day I continue to exist in this manner. 

I realize that sometimes this makes me appear selfish, crude and insensitive. That is not my intention. In fact those who know me best would attest to the fact that I am selfless, passionate and caring; however, those traits are often reserved only for those closest to me....those who I have come to know and trust.

And so I continue to hack and cough without care.

In fact, I embrace my wheezy existence....it's made me who I am. And if you don't like it...you can (cough) off! 

The Battle

I've often talked about how the most challenging part of living with CF is not enduring the physical setbacks, but managing the emotional affects of living with a fatal illness. As true a statement as this is, sometimes the physical setbacks can be pretty damn difficult to manage as well!

Case in point, in the last two years of my life. 

I always hesitate to share my negative experiences with cystic fibrosis. I find myself feeling guilty for complaining about my issues; when you consider the hardships that many CF patients face, my problems are relatively minor.

Yes. My lung function has dropped twenty per cent over the last two years, but my FEV1 still sits above 75 per cent most of the time. 

Yes. I am forced to manage weekly hospital visits and doctors appointments, which often require me to miss work or put off other priorities. With that said, I have still been able to pursue a career in a demanding, fast-paced industry; something that many CF patients can only dream about.

Yes. Having to take 60 pills a day, spend hours doing treatments and therapies, and constantly deal with the ups-and-downs of CF can be difficult at times. But when I find myself getting frustrated or feeling overwhelmed, I think about those CF patients who have had to endure the pain and suffering of dealing with a double lung transplant. I think about those CF patients who have succumbed to the statistics and lost their lives to this devastating disease without having the chance to do so many of the things that most people take for granted.     

It has taken me a long time to realize that it is okay (maybe even necessary) to complain sometimes. Not only does it help you get through the difficult times by putting things into perspective and evaluating how you really feel about certain issues, but it also gives other people the opportunity to support you, which is something that I have always had a difficult time doing.

On that note, the last two years have been fucking hard. 

I've managed to accomplish a lot; from marriage to my MBA, but it has definitely come at the cost of my health. I've been hit with setback after setback, including (but not limited to) kidney failure, diabetes, blood clots and pulmonary embolism, lung infections, allergic bronchopulmonary aspergillosis, cushings syndrome (as a result of high dose prednisone), early onset osteoporosis.........okay, you get the point.

I've also experienced several mental breakdowns, which have ranged from depression to severe anxiety. Many of these episodes were related to the symptoms caused from the laundry list of medications that my body relies on to function. At times I hated myself, hated my life, and felt truly uninspired to move forward. Luckily, I have an amazing support network that pulled me through.

I've had to deal with the fear and uncertainty that come along with living with a fatal illness while trying to manage a career, pay down a mortgage, complete (and pay for) an MBA, consider starting a family, run a successful non-profit organization (shameless plug: www.fflf.ca), and devote an adequate amount of time to my friends, my family, and most importantly my wife.

Yes. The last two years have been fucking hard. 

But I am still here. I am breathing. I am beating CF.  

Yes. The last two years have been fucking hard....but so is the thought of quitting. 

My battle is a constant one, and I recognize and accept that it is only going to get harder. CF will slowly but surely continue to steal little pieces of my life each day as I grow older.  It will continue to kill me. But just as I have for the last three decades, I will fight back. 

I accept that I will eventually lose.....it is an inevitability. But I will battle. I will push back. I will fight to the end.