I recently read an article about the “non-glamour” of being a teen with a chronic illness as referenced by the show Red Band Society on Fox. I have not seen the show, but the article did spark some points that I’d like to reflect upon here. If you would like to read the article you can do so Here.
“At the end of the pilot, Charlie says: ‘Everyone thinks that when you go to a hospital, life stops. But it’s just the opposite. Life starts.’After hearing those words, I wanted to cry. Life does not start when you go to a hospital. If you’re lucky enough to have a non-terminal illness, life continues, in a warped version that includes more pain and obstacles than any young person should have to experience.”
My first time in the hospital, when I was just 7 years old, was the only “hollywood stereotypical” time that I experienced in the hospital. I shared a room with a little girl my age. I played in the playroom with other people with CF. I made “friends” in my time there, and thanks to the Child Life Specialists and the clowns at Children’s Hospital, my memories there were less painful and more happy. I remember receiving lots of presents, doing lots of crafts, and being quite busy. When I think back to those couple weeks spent there, I see lots of colors, happy faces, and balloons. But the reason it was so glamorized was because I knew nothing about the nature of my illness.
As a seven year old, it’s great that the hospital COULD be that for me. But it’s important not to glamorize the whole experience of having a chronic illness. Because once you are no longer a kid, and can fully comprehend the gravity of the situation, it isn’t all fun and colorful.
What I didn’t realize was that doctors were having conversations in the hallway about my friend Victor who had a heart condition and was dying. I didn’t realize that when he told me he graduated high school early it was because his time was limited. I didn’t realize that all of us were in there because we were going to be sick our whole lives (or even die) and this was just the beginning.
I think that played a large part in my decision to do home clean-outs almost every time that I need them. The last time that I was in the hospital was for pneumonia and again, I wanted nothing else but to get out of there. I couldn’t sleep, I was constantly being poked and prodded by doctors, I felt like absolute crap and just wanted to be better. If nothing else, it taught me how appreciative I am of my good health every other day.
What I struggle with in the article I read, is that the teenager would throw away all the lessons she’s learned in her life if it meant she were never sick. This is something I go back and forth on. Some days, when I’m exhausted and I just want to live a normal life, I think that too. But most days, I’m grateful for the life I’ve been given. When I see the selfishness, the greed, and the sheer lack of appreciation for life that some people have… I think that I would never want to be like that. Would I be like that if I’ve never experienced this life? I can never be certain.
It’s a tough balance between maintaining positivity and being honest about the stuff that truly isn’t fun, colorful, and filled with balloons. I think if we show too much of the good stuff, people can often forget that life isn’t just this hollywood version of a hospital. I emphasize the positive in my life because that’s the only way I know how to survive. But, that doesn’t mean that CF, or my life for that matter, is glamorous. It may be inspiring, or uplifting, but there is so much that goes on in a person with CF’s life that isn’t beautiful, or inspiring.
Yet, it’s the tough stuff that allows me to see the beauty. It’s the white hospital walls that allow me to see the blooming flowers on the trees, or the stars in the night sky. It’s the bad days in the hospital that allow me to appreciate the good days. It’s the fact that maybe I’m not going to live as long as you that almost forces me to seize the day (sorry I just watched Dead Poet’s Society so I’m feeling very Carpe Diem). Without the bad stuff, there would be no reason to be positive; There would be no reason to see the good in the situation; There would be no lessons, no reflections, no effect on the way I choose to live my life.
In order to choose to be positive about the lives we live, we need to recognize, and admit, and even cry about the stuff that sucks. The hospital rooms. The coughing fits. The bad PFTs. The life expectancy. The ones we’ve lost. Some of these things we will never be able to see the positive in, especially when we’ve lost someone. Yet, without taking all of these negative things at face value, we can never come to terms with how to live our lives in a positive way.
