Someone once wrote, “What screws us up most in life is the picture in our heads of how life is suppose to be.” From the moment I read that, it resonated throughout my core.
Here I am coming up on my 27th birthday; in the past year I have moved about 3 times and been on IVs about 180 days. My lung function finally made it back to the 70’s after months of aggressive treatment. It’s hard to believe just a few months ago, I was in a wheel chair on oxygen with a much more different view in my head of what life should be like.
If you asked me when I was 5 what I wanted to be when I’m older, I would have enthusiastically said, “Barbie!!!” When I was 10, I wanted to be a dancer. I wanted to be a teacher at 15 and somewhere between then and 20 all I wanted to be was rich.
In my head, I was going to grow up and own my own business. After a tough day, drive my pink convertible back to my large waterfront mansion and wear cozy pajamas as my husband and I made dinner together and laughed about everything and anything.
When I started to get sick, it was like I could hear glass shattering as each dream collapsed. Own business? Shatter. Large waterfront mansion? Shatter. Husband? Shatter. And yet, time marched on.
I started volunteering and taking on my new role as an adult with CF; a poster-child of sorts. I started listening to other patients, families, caregivers, doctors, volunteers and we all had the same story: we live our lives based around a terrifying and unpredictable terminal illness.
So what was that suppose to look like in my head? Would I ever have my dreams back? Is my fate for my lungs to slowly suffocate me until I need a transplant? What do others think when they hear my cough? How many t-shirts do I need to buy to hide my accessed port? What was I suppose to actually DO with my new situation? And how did my dreams simply vanish?
Then, it was like out of nowhere, it occurred to me…people are only guaranteed one life. And some of our lives are respectably more difficult, some are respectively more easy than others. At the end of the day, I didn’t want to be negative. It was draining.
I had to find something to get me out of that rut, a new obsession, something positive to fill my newsfeed, and cut the negativity out. I needed to remember why months ago I took personal offense to #FUCF; because I lived a full life with CF instead of viewing my life as a CF Life.
I’m still on IVs and have been since October 1st when my lung function tanked to the lower 60s again. It’s been 3 weeks and no change. However, I unsubscribed to the negativity and started to rebuild what I wanted my “life” to look like.
It was about 10 minutes in to my Zumba audition, when I removed my scarf that was dripping in sweat and showed the entire class my accessed port. It was about 15 minutes in when I started coughing. At the end of the 8 hour, physically and mentally grueling day, salt residue could be seen through my black pants, my port dressing needed changed, and my dream of being a dancer/teacher/Barbie was actually coming true.
Not once did my fellow athletes ask me about the needle delicately protruding from my chest, but they did ask me the steps to the merengue with a fitness twist. Not once, did anyone ask me why my lunch was packed for 2 people and I ate both portions. Not once did anyone notice the white powder seeping through my yoga pants, but they all noticed I smiled when I took the stage at the end of the day.
So, sure, I’m still waiting for that mansion, pink convertible, and husband. But in my head, I’m done giving in to this disease. I’m done being negative. I’m done seeing myself as “sick” and “dying”. In fact, when I was living with 80% lung function, I was not nearly in as good as shape as I am now.
P.S. I’m officially a licensed Zumba instructor and port or not, CF is not going to be main story of my life that I write.
Klyn is a 26 year old licensed Zumba instructor in Southern California who is a member of the Board of Directors, and Chairwoman of Board Development for the CFLF, newly elected to CF Roundtable board, and CF Act Now. When she isn't dancing, she stays busy by...wait...she's always dancing.
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