One of my earliest memories from elementary school was leaving class a little early before lunch to go to the nurse’s office to take my enzymes, always accompanied by a school peer. I wasn’t allowed to bring my enzymes with me to school because entrusting a young kid to take their medication on time was ambitious. At the time, I can recall explaining CF to the peer. I would always say something along these lines:
“I have an illness that causes my lungs and stomach to work differently, so I have to take medication before eating food, and it also causes me to cough a lot. But don’t worry! It’s not contagious!”
When I reflect back on that young kid who had the responsibility of educating others about CF at such a young age, I feel sad. It makes me sad that a young child would have to spend time doing that. I especially feel bad that I was so compelled to call it an “illness,” as if disease were a harsher word. (I now say disease all the time, but that’s a topic for another time.) I also feel bad that I had to tell others it wasn’t contagious. I’m sure my having to tell my peers this was hard on my parents, too, since they already felt that CF was an undue burden on me anyhow.
As I get older and reflect more on the formative times of my life, it occurs to me how transformative that was. When I told other kids this, it was because I wanted to be transparent about why I had to go to the nurse’s office. I wanted to make sure they understood it as best as they could, even from my limited understanding. I also think this was the time that caused me to become the aggressor in my care, to be my own biggest advocate, and for me to embrace the freedom that comes with my openness.
I don’t believe all people with CF are responsible for educating everyone else about CF. I firmly believe that each and every person has an acceptable way to approach this; to some, being transparent is empowering, while to others, vulnerability is difficult and painful. How should children with CF be expected to be their own people while also being insulated from the many other tough parts of having CF, aside from the physical manifestations alone?
Normalcy is a weird, amorphous, and honestly pointless concept. There is no real normal that encapsulates all people. With CF, I’d venture to say that our lives are even more abnormal than the average person’s. This means that parents have to take that into consideration when parenting kids with CF. Some parents may encourage their children to understand and be open about CF, whereas some may feel that it’s best it be a private discussion.
My perspective is that children are oftentimes far more intelligent and in-tune with their surroundings than they are given credit for. They’re able to understand to a limited degree what their life is going to be like forever, so teaching them about their CF and how to put it into words that make sense to them, and allowing them to frame it in a way that allows them to feel somewhat normal and empowered are lessons that can have profound, long-term, and positive effects on their lives.
Life with CF should not be a bubble-boy sentence for a child. CF exacerbations and the risk of viral or bacterial infections are serious, but a child confined to a life with no social life or chance to learn on their own is also serious. It potentially could be dangerous for their own care if they are never able to be the aggressor or to understand that, sometimes in life, you have to weigh risks and rewards.
I encourage parents to seriously contemplate this before making rash decisions that may limit their child’s ability to socialize or to be in a world surrounded by other people, especially when that’s probably precisely what their child wants to be doing. It is possible to have CF and be around people and still feel that wonderful feeling of normalcy, no matter how much I dislike that word.
Follow Tré at his humbly named website www.trelarosa.com.
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