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.