Twenty-eight years ago, I was born with a life-threatening disease called, Cystic Fibrosis. The first decade of my life was no different than what you might envision for a child. My preteens, that was a different story. Hospital stays every other month, weeks of IV infusions, and my absence from the real world became a part of my life. I don’t believe it was ever a conscious choice but lying became second nature to me. Lies about why I was missing so much school, lies about why I was always turning bright red from coughing fits, and never EVER admit the real reason I was different. I adopted this façade and just convinced myself it was working. The reality of the situation was…I am a horrible liar! Nothing made sense and “my friends” were not really my friends. I can’t blame them though, they never really knew me because I wouldn’t allow anyone to know me. The thought of becoming the “sick kid” was too much for me and the more I pushed my lies and stories on people, the more they pushed away. I didn’t even know who I was by my late teens.
I spent so much time hiding my struggle because I feared no one would understand and in turn I would be judged for something I am unable to control. I realize now that all the time I spent afraid of other people’s opinions of me affected the way I feel about myself. I started to hate who I was and resented the universe for making my life unbearable. The self-loathing would stay with me for years to come. It wouldn’t be until my early twenties that something just changed in my mind, I wish I knew what, but I really don’t know. Slowly I started letting people in, trusting them to accept me and see me for more than the disease I have. It’s a hard thing to let people into your life when you know that chances are your life is going to end younger than most. Part of me still struggles with that. I have no choice but to deal with my challenges but bringing those struggles into someone else’s world almost seems cruel. I’m a constant work in progress but it’s a project I’m committed to.
My mid-twenties hit me hard, literally! Constant aches and pains and my diminishing lung function brought me to my next chapter. A double lung transplant is something I knew might happen my entire life, but you just don’t know how to react when it’s right in front of you. I knew from a medical standpoint I clearly needed it or that was it. There were no more options or treatments to try, the damage was too much. I got my mind right and just pushed forward like I have done my entire life. It was a mind-blowing three days of waiting for a match when I received the call for new lungs. I still can’t comprehend my emotions that day. Twelve hours later I was in the operating room and about to be given a second chance. My life was amazing for a while, but bumps are expected after transplant. I’ve always been someone who tends to find all the potholes in the road and barrel towards them at full speed. Four bouts of minor rejection, gallbladder removal, Lymphoma, 3 sinus surgeries and now chronic rejection in the 2 ½ years since my transplant. When I look at it, it sounds horrible and unthinkable, but I would never change that time. It was unbelievable; plain and simple.
I am back in college and working towards a bachelor’s degree, I am not just watching, but participating in my nephew’s life and I have received years of life that I wouldn’t have had otherwise. I just can’t be made at that. Present day has me preparing my mind again for yet another transplant. I suppose this will be my third chance, something most people aren’t offered. I’m ready, mentally and physically. It’s so easy to look at the negative side of life and I am so guilty of that. I am fond of some self-deprecation. I think it’s healthy and funny to a point. I walk that line every day because I want to be honest with myself and others. I’m closing in on thirty and I’m just too old to be ashamed of who I am. I have a unique life and an extraordinary story. I am no longer lying about my disease! I am no longer lying about what makes me different! I am more than my health issues, but I’d be lying if I said it wasn’t a huge part of who I am.