Having cystic fibrosis forces you into a niche demographic -- a demographic that is so unified, but so far apart from one another. Those diagnosed with CF are forbidden to engage in any physical contact with other CF patients. This is to help prevent the spread of each individual's highly contagious and possibly fatal infections and viruses. Because of this, growing up I never met anyone else who had CF. I knew people existed around the world maybe, but no one I was able to start a Skype call with or share stories with over the phone.
No one looked like me. Every single person I have come across who had CF was white (Caucasian European); no one was of African heritage.
Even to this day, my brother and I are considered needles in a haystack. Being forced into an even more niche demographic only helped fuel my feelings of loneliness and isolation. Growing up and living with cystic fibrosis was a struggle. My childhood turned me into a pathological liar. I had to lie to my closest friends and extended family as to why I couldn't attend some family gatherings or why I was absent from school for weeks at a time. I also attended an elementary school where the main population was white.
I grew up as everyone's token black friend. There was a certain standard I had to uphold to avoid stereotypes, avoid petty sympathizers, avoid labels, and most of all avoid being outcast.
I just wanted to be a normal kid who was able to live life not worrying about being able to breathe, not worrying about my daily calorie intake, and not worrying about getting sick from the slightest change in weather. I wanted to be like everyone else around me -- healthy. This is how I felt for the entirety of my elementary school years, as life was to get only more complicated during my four years of high school.
High school was not as hard as elementary school, but it did offer its own unique set of struggles. Teenagers are so judgmental when they notice someone different. Everyone in their teens tries to ascribe themselves to a certain group that is either well recognized or popular. I loved music, so I joined the school's senior concert band, jazz ensemble, and the school choir. I also took every music class (besides the keyboard), as well as a dramatic arts class for the full four years.
By grade 10, my health started to rapidly decline as I had a constant and persistent cough that was hard to contain. Long dramatic performances started to become very daunting as sometimes I'd need to pose like a statue for a lengthy bit of time. This was hard because I would then have to hold in my cough. Holding in a cough with no water in sight is the most uncomfortable feeling ever.
Eventually, I had to scale down my music extracurriculars simply because my lungs couldn't handle the heavy demand of playing the saxophone or singing a note for a full two bars of music. I would just have to cough so often and for a long time without the aid of water. Surprisingly, I cannot recall anyone ever questioning me about my health during high school. If anything, my closest friends just joked around about it and that didn't bother me one bit because I still felt I belonged to the friend group. I felt more wanted in high school than I ever had in elementary school. Some people looked like me, dressed like me, and talked and walked like me. But the bitter fact still remained: I was not healthy like my peers, and I still felt alone thinking I was the only one in the world with cystic fibrosis.
After high school was over, as I made the transition from pediatric CF care to adult CF care, my health had only gotten worse. Ages 17 to 20 were my years of denial and extreme ignorance. I knew college was going to be a whole new ballgame, uncharted territory. I felt more welcomed than I had in high school because I found people who looked like me, but again with my luck, no one to fully relate to. I was only able to complete one year of college due to my rapidly declining health. Spring 2017 is when I finally gained the courage and went through the whole transplant process with astonishing success.
Two months after my surgery, I had a set of tests and a clinic appointment. In the waiting room for the pulmonary function test (PFT) labs where the technicians see how well your lungs are functioning, I had overheard a small group of post-lung transplant patients talking about a Facebook group that catered to the transplant program at Toronto General Hospital. Upon my acceptance to the group, I was finally able to find people who lived the same life I had been living from birth. This Facebook page was the gift that I've been wishing for a very long time. This was my CF/transplant family.
From being a black youth to becoming a black man growing up in a predominately white environment, I had and still have to hold myself to a certain standard to avoid discrimination and any other acts of inequality.
Having CF while living in such a climate allowed me to view life as a whole from a very special point of view. CF is me, but CF does not define who I am. I am a strong black man, but I'm also a human being like everyone else.
Interested in sharing your story? The CF Community Blog wants to hear from you.
