My big secret was Cystic Fibrosis (CF). It is a genetic disorder, causing mucus build up in my lungs and pancreas, and a slew of other implications. I was born with it, it was not something I wanted, chose, or accepted. I would deny it at all costs.
CF was something I was ashamed of. I would either hide it or lie about it to keep me from feeling like I was different or not as capable. It was especially difficult for me to come to terms with my health condition when I was a teen, dancing competitively.
I wanted to be able to achieve the level of skill my classmates had, and I didn’t want anyone to deprive me or doubt me when given opportunities. I didn’t want to deal with CF, so I skipped it. I denied it. When I had to do my physiotherapy, I either didn’t do it, or I didn’t do it effectively. I developed a cough, that became an infection in my lungs, that if not treated, over time, would have meant I would not be able to breath.
It’s surprising I was able to go as long as I did without doing my physiotherapy properly. I wound up in the hospital for two weeks at two points in my life. Once when I was 12 (pictured above) and another when I was 15 (pictured below).
When I was in hospital at 15 years of age, I was taking three different medications, hooked up to an I.V. two weeks before my nationals dance competition that took place in NYC. I had prepared for it all year. I would only be released from the hospital, and able to continue my treatment from home so I could return to dance rehearsals, if my lung function was up over 80%. I had a 69%, and four days to prove I was healthy enough to go home. I got my lung function up to 90%, with the help of a physiotherapist, my mom, my doctors and doing physiotherapy on my lungs three times a day (yay!).
I had a PICC line inserted in my arm which allowed me to detach from my IV and practice my dancing. At that point in my life, dance was the only thing I could feel normal doing. No one saw me as the kid with CF, they just saw a dancer.
Now my two worlds were colliding. I couldn’t keep it a secret anymore when I showed up at dance with a PICC line in my arm. I had to face the truth: I was in desperate need of care, all because I hadn’t taken proper care of myself, and it was because I had Cystic Fibrosis, something I didn’t really want to face.
I had to face the truth. It took me a long time to come to terms with it, but I realize now, looking back, that had I faced it sooner, I would have been much kinder to myself, healthier and I would have enjoyed a better quality of life and relationships. The truth pissed me off, but it also, ultimately, set me free.
Today I am healthy, I am managing my CF, and I see CF as an opportunity to show what is possible. I can contribute to the lives of Cystic Fibrosis patients, raise money and awareness to fund a cure – that we must find in my lifetime. I can play a meaningful role in helping to create change, raise awareness and funds, rather than be a victim to the truth. I’ve learned to break through, instead of break down, when faced with truth. That acceptance is only the first step towards change.
I know that from time to time, you are faced with challenges too. We all are, even though it feels like we are alone and the challenges we face aren’t always obvious on the outside.
I’ve learned to have empathy for challenges and the kindness that is possible when we open ourselves up and commit to breaking through them. I’m not above or below my health challenges, I am right in the middle of them. I am looking at them, eye-to-eye, finding peace for myself, my condition, and moving into grace and respect for all that it has contributed to making me who I am today, and for all that I have yet to impact and accomplish, despite it. There is too much life in you to allow ANY single challenge to stop you from living life to the full!
Cheering us all on!!