I’ve started meditating. It’s so hard.

 

We all know how this chaotic world affects our monkey minded thoughts. And, lately, I haven’t been able to contain them. Here comes the pity party, brace yourself. Spoiler alert: it turns around at the end. In a world where Orkambi is changing the lives of people living with cystic fibrosis, there becomes glimmer of hope. Real hope. (To read about the magic of Orkambi, check out one of Brian’s past blogs http://www.cflf.org/blog/my-new-life-potential)

 

However, if you’re not one of those lucky ones with the correct mutation, like myself, it almost feels as if this medicine is a game changer for a different disease. There’s a Jekyll and Hyde in my head when I think about this. I’ll admit, I am so jealous. I want these pretty little expensive pills more than anything, more than a sunny, warm winter in upstate New York. More than a world famous bowl of macaroni and cheese. More than returning to Hawaii and surfing the hawaiian sunset.  

 

At the same time, I am very happy for all of those taking them. We get closer and closer to new medicines and, dare I say a CURE. But time never slows down, although we’d like it to. A progressive disease, is just that, progressive. (I think I hate that word). I have watched my body deteriorate from the mass amounts of antibiotics flooding my system every other month when I am sick. I watch myself surrender to the proverbial glacier that needs to be climbed after each hospitalization. I push people I love away while simultaneously holding on to people I love too tight. It’s maddening. There’s no set routine of daily life. 

Jobs have come and gone. As have relationships where an understanding cannot be reached. Places with people I love all across the world go on without me living there anymore because I need to be home now. I guess sometimes I get in my own head about the life I could be leading, instead of just being with the life I’m saturated in. It wasn’t always like this. My world was simple...

 

Past: There once a little girl. She’s still kind of little, but a bit bigger. She was told she could be whatever she wanted to be, so she unabashedly professed she wanted to be a singer. She couldn’t sing, but what did that matter? She still told all the friends of the land around her, with a population of 500, she was going to be a singer. This was the obvious profession for her and if no one else could see it, it didn’t matter. As she got older, the world of career paths became wider and wider and the maps in her head expanded. During her childhood she acquired a plethora of skills any kid would. She loved art, the forest, Micheal Jackson, pink boom-boxes, mud, and salamanders. And, in her mind she was still a singer.

 

Identity. It’s something we as humans strive for in every stage of life whether we are conscious of it or not. Take the last Facebook quiz you took for example. Mine was the “What Color is your Aura” quiz. Yellow, phew, I knew it...I digress. I think as people grow older, some of the hardest parts to let go of are these former identities. It’s difficult to open up to or become identities we may not have wanted or not have thought would become us. For me, cystic fibrosis was always a common denominator, but never on the surface for the most part, until the last year or so.

 

This little girl had cystic fibrosis. while she was singing her way to professionalism in her head, she was also performing daily chest PTs for 30 minutes twice a day, taking pills, eating LOTS of food and whatever else she needed to do to maintain her health with the cystic fibrosis. She never questioned her desire to be a singer, maybe it was the unconscious recognition of how music made her feel. 

It could change her moods, open her eyes and bring her places she hadn’t been before. Just a guess. How did this little girl know she had to take her medicine and do her treatments without question or hesitation? Maybe it was the unconscious notion of how being sick in her future could possibly feel. Maybe it was the observation that life was beautiful and free, so why ruin something good. Who knows? It’s just a guess.

 

Back to identity. A common first question out of most people is “So, what do you do?” People naturally look for labels. They are shortcuts, heuristics, in getting to know you, to relate to you. I can understand that. If the paint in my Golden acrylic paint tubes weren’t labeled, I would have to use my other senses to examine what the object and color might be.The mozzerella cheese that I love could very well be the tofu that I hate without the label. The question is always difficult to answer though. When I say, "I take care of myself," I get weird glances and then often have to explain more than I want to when just meeting a person. Next time I am going to say I am a student studying health. It might be easier, and it's still true.

 

The little girl grew older and went through many transitions, taking on whatever the world was presenting in the moment. At one point she became an avid snowboarder and that dictated the majority of her decisions for a few years. In her little world, it was easy and it kept her healthy. If she could only see the big picture at that time of the ease of the simplicity. This slowly transitioned into being an artist and a yogi, and of course, a singer, always a singer. She started to become increasingly sick. In a dismal, dark and scary place, she began to lose all sense of identity and became a human body fighting for more chances. More chances for the choice to form more identities. That was who she had become.

 

That’s what I am. I am. I won't deny how being sick and taking care of myself being priority to everything else has hindered my preconceived path of my life. Many doors have been opened and shut, or slammed before even stepping a foot into. But it’s ok. I know who I am and am still learning more everyday. Life is progressive (Ok, I think I love that word again). And if that door was the right one for me, it’ll still be there when or if I am ever ready for it. When the right medicine to treat my lungs becomes available, I’ll be here to open that door faster than any door I’ve ever opened.

 

Sometimes you like and do things for unknown reasons, it’s just an intuition.

 

Taking care of myself is one of those things. Today, I am me. I am an artist, a cystic fibrosis patient, a yogi, an explorer, a seeker of the salamanders coexisting in this delicate world, a 29 year old living with her mom, a meditation enthusiast, a person dedicated to taking care of herself and I am a singer, always a singer*. You sing when you are happy.

 

*I am a horrible singer, it’s more of a metaphor.

 

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Vicki Thompson is a 29 year old with cystic fibrosis living in upstate New York. She explores the arts daily, takes care of maintaining her health in every moment and searches for the moon when it is missing from the sky. Follow her journey on Instagram at vicki_lynn27