Breathing and Beating: The Fault in Our Stars: The Beauty in Our Infinities

TFIOS

I recently read a novel that finally reflected my thoughts on a daily basis. Granted, the story itself was about a girl with Cancer, what I have heard called a Cousin to CF. Cancer can progress faster than CF and affects more of our population. Yet the similarities are notable:

1. the daily symptoms that indicate the disease is ever present

2. the thoughts that accompany those physical feelings, be them sad, happy, sarcastic, or courageous

3. The questionable course: what will happen in a few days, months, years?

“The Fault In Our Stars” by author John Green is, in my humble opinion, one of the most well-written novels of our decade. Books like these help open the minds of our community to the realities of living with a chronic disease. By this comment, I do not mean that he tries to teach our community how persons with chronic illnesses suffer, how lucky persons are who do not have diseases, or anything of that sort—instead, I believe that Mr. Green does a fantastic job at examining how beautiful life can be despite having a chronic disease. Hazel Grace, the main character diagnosed with thyroid cancer, enjoys things that we take for granted. Her thoughts are comprised of sights, smells, feelings in the present, in the moment she is in. Her life is simple, yet full. She is also Real: she makes fun of Support Group; allows a stranger, a child, to try on her nasal Cannula (breathing tube); and calls herself a Grenade that could explode at any moment.

Which brings me to my favorite aspect of this book: She Does Not Desire Sympathy.

I believe those with cancer, and CF, are felt sorry for because our population is predicted to have a shorter lifespan. We apparently, according to the most recent Age statistics, do not get to enjoy all the pleasures, joys, sorrows, beautiful downs and ups of a full human life. My answer: Want to bet? In the past 24 years I have accomplished things I was never predicted to and things others that live till 101 years old will never do. I have ran a straight 13.1 miles and did not stop once; I have fallen in love, twice; I have spoken in front of 500 people when I was the smallest person in the room; I have endured tragedies that have made me stronger, including the loss of loved ones; and I have pushed past my predicted lifespan, a mere 5 years old when I was diagnosed at 2. What I present to you today, ladies and gentlemen, is a person who does not breathe based on sympathy. Like Hazel, I did not plan on enjoying my life so much as I have—my parents, doctors, friends all thought my life would be full of regret and “what if I could have done X, Y and Z.” What I have discovered is that my life is as full as I ever wanted. I do not need anything more than what I have.

“Some infinities are bigger than other infinities”--Like Hazel Grace, I am very thankful for my smaller infinity.

So what do you want? What’s still lacking?

Living with a chronic illness can be at times confusing, frightening, and all at once make you feel electric, with swimming thoughts of all different types and colors floating around in your mind. There is so much going on, all the time—it can be hard to even explain it but I’ll try. I’m on a run, and a steep hill is coming up, and it’s no ant hill. This sucker’s a mile up high. I start chugging up with swinging arms and higher knees, and a cough starts. I am getting short of breath, ‘thick’ lungs holding me back, and negative thoughts of CF and all of its technicalities start rushing around my head. Sandwiched next to these thoughts are memories on how I conquered the run thus far, I have worked so hard until this point, up till this time, up till this hill, up till this step…up till this point in my life. If you tell me to stop now, I will refuse. Combined with the fears of an asthmatic attack and the motivation of an Olympian I pummel through that hill. These mind cocktails are fascinating because, in the end, the positive always wins.

Experiences like these, the fallen and the fighter, are what we, as a CF community, think about every day. This is why when someone looks at me and says “You have what? You do not look ill. Are you contagious?”, my immediate response might be: “Well, thanks, I think I look pretty good, but the truth is you’re very naïve and blind.” (The contagious comment gets me laughing every time;)

I want education on the experience of CF to be infused in peoples’ minds. I want others to look at me like my physicians, parents, best friends look at me and just realize that ‘it’s okay if you look healthy to us, but only you know how you feel and we respect that.’ I want empathy, not sympathy. Understanding, not pity.

Persons with CF and their caregivers: I know you grow frustrated when people ask ‘stupid’ questions. But you have to be the one to speak up. By not speaking up, you’re allowing those questions to continue. Become a confident leader and an advocate by educating yourself on all new CF info, and then share it with those around you. Get off the whispers & rants of Facebook and get face-to-face, sharing with others your knowledge and experiences. Knowledge is power, and through sharing the facts we will one day make CF stand for Cure Found.

B&B,

Meghan