What have I gained from Cystic Fibrosis

I wrote the following as part of a college scholarship application, in response to the question, "What have you gained from Cystic Fibrosis?"

“You have Cystic Fibrosis? Oh…” The words trail off quietly, implying the speaker’s shock, sympathy, and pity for the poor illness-inflicted victim. How many times have all of us heard those same words, that same tone – those same thoughts? Yet in their sorrow, these people – often our dearest friends or family members – fail to see what lies beyong the name “Cystic Fibrosis,” beyond the title of “CFer” or “CF patient.” For though in one sense it may be a curse, a burden we would all gladly give up in an instant, in another it can be a blessing as well – if we but choose to look for it.

What have I suffered from Cystic Fibrosis? I could speak for ages about the pain, the frustration, the endless hospital visits and medications, the limitations… but we all know of that. Anyone with eyes can see that. The stranger on the street who only knows statistics can understand that much. What have a gained from Cystic Fibrosis, however… that is a question few people think of, and even fewer would dare to ask. It seems so heartless, after all, asking about the benefits of a deadly disease that must be endured day in and day out for a lifetime. The benefits, however, the insights and knowledge and growth we can take from this disease, are the most important thing of all. The light shining through the darkness must be sought out, for it is what gives us the strength to keep going and fight on.

Look how many people live their lives today, floating carelessly from one day, one hour, one minute to the next, taking their existence for granted and living for the pleasures of the moment. How many people do you suppose stop and think how wonderful it is to be able to breathe in the air without struggle or pain? Not very many… in fact, until recently I never thought of it either. I only dwelled on it when a breath without strain became a rare thing rather than a commonplace one. It is the simple things we take most for granted… until we lose them.

How many people blithely make plans for the future, mapping out weeks, months, years – even entire lifetimes – without a thought that these grandiose schemes may not come to pass? No one ever thinks that the opportunity to shape one’s future may be yanked from one’s hands before even getting a chance to try. After all, the future is up to us, it is ours to hold – unless you realize that your future may not stretch on very far.

We run, we jump, we dance and play, speak and sing, revel in the power and beauty of our bodies and their capabilities. We stretch and test ourselves, push to the very limits, test and overreach our abilities and skills. Our bodies are ours to command, ready to perform any task the mind can conjure up for them – unless inexplicably they begin to fail us, and the mind begins to set goals at which the body can now only sigh wearily and turn away from.

What have I learned from having Cystic Fibrosis? If anything, it is the one lesson which is most important for everyone to learn: never take anything for granted. Every breath, every thought, every motion, is a precious gift which can easily be lost. Every moment of life must be reveled in and known for the remarkable thing that it truly is. Anything which seems commonplace and comes to be expected and mundane – shouldn’t be. For even the most mundane and common of things will be sorely missed once they disappear.

I look at the people around me, those who are “normal” as I only wish I could be, and I envy them. I envy them their abilities, their strengths, which I sometimes lack. Yet at the same time, I pity them. I pity their inability to truly see the amazing privileges they are granted. And I look to myself and realize yes, I may be lacking some things which they have, some basic physical abilities which they can take for granted… but emotionally, intellectually, I have something more. I have the unique ability to look at life from a different perspective, and realize how rich it truly is. Thank G-d for my weakness, for in actuality it is my strength… for though they can run, I can see.

The scholarship application also required a creative presentation. I turned my feeding pump
into a carnival and used the pictures to create this collage.