This is something that’s always bothered me and recently I’ve felt the need to articulate it.
Maybe it’s simply become more prevalent in the internet blogging age, but I see a LOT of people who blog where they totally define themselves by something that’s wrong with them. Some of these parents completely define (this is mostly parents, I’ve seen) their children by these facts.
This bothers me. If my parents had done this, I would’ve been so perturbed. No one’s parents are perfect, but I’ve had something wrong with me since I was a bit over a year old. Before being diagnosed with CF at 11, I had seizures. But I took swimming lessons, dance lessons. My parents took us to Disney World. We went to theme parks. After my CF diagnosis, I wasn’t given any “special” quarter. My parents didn’t deny me things like class trips to Disney, or anything like that. I wanted to be seen as normal, as much as possible. They treated me, as much as possible, like my other two “Normal” siblings.
So when I see parents who are so worried about their children that they won’t take them to theme parks, or to REGULAR parks (and CF kids do NOT have compromised immune systems, guys); who title their blogs with things like “CF (kid’s name)” or “CF Warrior So and So”, I feel bad for these kids. Because how are they supposed to see themselves as more than a disease if their parents very publicly do these things?
Personally, I only told people I had CF when they needed to know. My teachers only knew if I was on IVs, and then I needed extra time to get to class, because my school had 2000 plus kids and 4 minutes to get to class. Jostling in the hallways, not good. A really heavy backpack with a PICC line, not good. So I had extra time to get books and get to my next class.
I made up all my work. Always. Once I missed an Algebra II exam because my PICC line decided to start bleeding out in the middle of the night. (Yeah, that was fun.) After getting it fixed after an hour or so on the phone, I went back to bed, my mom called the school, I took the exam that afternoon. (believe me, I need all my mental powers for algebra…)
I see parents who treat their kids like they are precious pieces of porcelain that are going to shatter at the lightest touch. They have made their kids entire existence about a disease.
I do not, ever, want to be defined by the fact that I have a sucky genetic code. If I had to define myself as anything, it would be: Catholic. American. Italian/German/Scots-Irish. Writer. Sister. Daughter. Friend. Actress. Those sorts of things. Not “Oh, a kid with a bad genetic code.”
It makes me sad because I see these parents and I think, do you know what you’re doing to your kid? I feel like you’re stunting them. There’s a line between “My kid can do anything!” and “my kid can do nothing.” It’s called reality. I will never climb Everest, OK? I’m cool with that. I will never have kids. I’m also cool with that. (And that took a long time to get cool with, people. ) I may get married. I may not.
My life is not defined by things I can’t control. To me that’s like defining yourself by skin or eye color, or height. It’s not who you are . It’s something that is part of the puzzle, sure. But it’s not what I am.
I believe, of course, in awareness. Now I talk about organ donation a TON because I want to get more donors. I’m open about it in a way I wasn’t with my CF. Maybe it’s because it’s so easy to effect change. Be an organ donor. Save lives. Boom. Also, people don’t know a lot about genetic diseases. They can be afraid it’s ‘contagious’. So awareness is important, there, too, but it’s also harder.
I’ve had people reject me because of this stuff. I’ve had guys break up with me over it. And you know? That’s just part of it. But it’s not, and never will be, how I define myself. And it makes me sad when parents do that to their kids, because they are laying a mental groundwork that can be hard to overcome later.
I don’t want pity, and I don’t want special treatment. I’m not made of glass. Accommodation when needed, yes. I have a lot more doctor appointments than most people. I have my transplant team, my ENT, a cardiologist, a dentist, an eye doctor, an OB/GYN, a PCP (that I never see but that’s another story), a dermatologist, an audiologist. The list is long. Yes, I can get sick easier than most people, hence my “get a flu shot” campaign. But don’t treat me like I’m less because of these things. I am what I am, and this has made me what I am. But it’s not how I choose to define myself, or talk about myself.
I use this blog, sort of, as a platform for awareness and education of CF and lung transplant. Transplant, especially lungs, is a bit of a Brave New World of medicine. By talking about it, I’m hoping people will learn about it. But I don’t want to be the transplant kid, or a walking medical guinea pig, although I am those things. 🙂 I want to be something better.
I don’t know if this really makes sense. But this is something that’s been on my mind for awhile. Don’t define people by what they might “have” or “what’s wrong” with them.
For example: My CCD class has one kid who is blind. But you know, I don’t even think about that anymore. Yes, if people bring in something he can touch to cement a lesson, we let him touch it. But he’s so whip smart and adorable and just endearing that he’s just him. He’s not “the blind kid”.