I was encouraged to post this to my blog by someone I met last summer who has quickly become an important person in my life – the sister I never had.
I want to preface this by saying that I have Cystic Fibrosis (CF) which is a genetic lung disease for which there is no cure. CF is a suffocating disease – both literally and figuratively. My life has always been restricted and dictated by CF. My physical activity is limited and I have no idea what it’s like to fill my lungs with a deep breath. I have a routine of medications I have to do in the morning and the evening and there are numerous appointments to go to. There are various pieces of medical equipment that have to be cleaned, maintained, and replaced and a never ending list of prescriptions that need to be refilled at the pharmacy.
I had a sort of epiphany recently that allowed a few things in my life to fall into place and make sense to me like they never had before. When I was a little girl I dreamed of having a horse. I begged my parents and even my grandparents for a horse. They thought it was the typical little girl dream of having a pony to ride and take care of. But I seemed to be overly emotional about it. What they didn’t know was that whenever we went on a road trip I would stare out the window of the car and picture myself riding a horse bareback through the fields along the road, wind blowing through my hair. What they didn’t understand and what I couldn’t articulate at the time was that that was my little girl idea of freedom.
As I got older, I slowly let go of the idea of having a horse. I entered high school and dreaded every morning. Especially in winter. Mornings for me started with having to cough for up to half an hour to clear my chest of everything that had settled in it overnight. Then I had to complete all my medications and go out into the cold and walk several blocks to school. Walking to school meant that, more often than not, I would be short of breath and have a headache by the time I arrived at my first class. This was an everyday thing. A terrible way to start the day. Everyday. So when I turned 16 I was extremely excited to get my driver’s license because that meant I could get myself to school without feeling awful by the time I got there. Then something I hadn’t expected happened – I failed my driver’s license test. Twice. I was absolutely crushed and unbelievably angry. For the circumstances, it seemed like my anger was over the top. My dad chalked it up to the fact that throughout school I had always done well on exams and this was one of the first exams that I had ever really struggled with. Looking back, I think I was so angry because, in my sixteen year old mind, freedom kept falling just out of my grasp and I was desperate to end my miserable daily walk to school. I finally got my license on my third try and to this day I still go for drives just for the sake of driving. I love it. Especially in my standard.
After I graduated from high school, the travel bug bit. Hard. I became restless. Especially after my first year of university. Traveling gave me another sense of freedom especially because I could escape the life I have at home, which in many ways, is centred around my disease. This past June I went to Vancouver, B.C. and I fell in love. There’s just something different about the air out there. It feels like freedom. It whispers freedom in your ear.
That’s the funny thing about CF – you never feel really and truly free. I don’t think I’ve ever felt true freedom. But out there, gazing up at the tallest of trees and looking out over the bluest of oceans, that was the closest I’ve ever come to experiencing genuine freedom. It is probably the closest I’ll ever come until the day I can stand out on the ocean’s edge with someone else’s lungs in my chest and take my first full, complete breath of ocean air.
But then I think to myself, is that pure freedom? Because I can’t claim that that freedom is all mine. The lungs I’m using to take this breath of ocean air aren’t even my own so when will my moment come? When will I feel free? Will I ever? Or did I lose my chance at freedom the moment I was diagnosed?
I wrote the last two paragraphs above in early September. I just recently told my parents about what I had written and the things from my past that now make sense. They cried. I cried. And then my mom suggested something to me that I hadn’t considered. She said that the moment I take that first breath of ocean air after receiving a double lung transplant may not be all mine but it will be even more special than that. I’ll be sharing that first full breath of ocean air with someone who no longer has the ability to do that on their own. Someone whose lungs saved my life. Someone whose lungs gave me the ability to do the one thing I have been dreaming about – fill my lungs with ocean air for the first time in my life and feel freedom deep down in my chest.