It’s a disease, peculiar in the fact that’s barely a disease, in a sense. It stems from a missing protein in the genes, which, because of the way it functions, makes the mucus a lot thicker than it should be. So, it’s not as much a disease on its own until you consider what this means for the rest of the body. Wherever mucus is, it causes complications, varying from mild to inconvenient to detrimental. Digestive system and lungs are the two systems it hits the hardest. It can cause difficulty processing food well, often needing supplemental enzymes or other medications. But the worst consequence, perhaps, is the infections that can stem from it. And it’s all because of that mucus.
Mucus is supposed to be naturally thinner. The thickened mucus from CF traps the bacteria that can enter the body and lungs and leave through normal coughing. Then, microbial organisms will be able to fester, having little way out of the airways, and start to damage and scar the lung tissue. If left untreated, it could end up causing organ failure if the scarring reaches a critical point. Hardly a pretty situation.
It’s a horrible disease, because once we consider what it allows the body to experience, it becomes much more threatening than it seems on paper. It’s always there, inside, almost taunting with its currently-incurable presence. You’ll get healthy for a while, start to feel better, antibiotics aiding. Then you’ll catch something new, or something becomes resistant to that medication. The health starts to decline again. And almost every time, depending on the severity of the mutation, you’ll have to go into the hospital for IVs to try and get your health back on track. Over time, in the life of a person with CF, it weighs down on them.
So why would I bring this up?
And I know exactly what a person with cystic fibrosis has to go through, because I’ve experienced much of it. I’ve lived my entire life with it. And I hate to think I’m a victim of it, but that’s a fact at this point. It’s a burden. Plain and simply, it’s a burden. Great strides have been made to cure the base genetic disease, but the infections that the mucus trapped in there are so dangerous and hard to treat, I’m not sure if I’ll ever be fully free of the scars it’ll leave behind.
So what can anyone do when they’re faced with something as daunting as that? Something so difficult to overcome, something faceless, yet a part of you all the same, as controllable as the winds or the planet’s rotation? Is there anything that can be done?
I really don’t have a concrete answer. All I know is that, right now, I can’t do anything other than to try and live with it to the best of my ability and with the medications I’m given.
For years, I’ve blamed myself for having it. It made no sense to, and yet, I couldn’t stop. I hated this disease enough that it blinded me, to the point of directing the bitterness at myself. But I know now that I have to change that.
I wasn’t supposed to make it to age 18. Yet here I am, writing this. I didn’t think I would make it past this last year. And yet again, here I am, writing this. I’m constantly breaking past the boundaries and limits and predictions put on me, and sometimes I don’t even know how I accomplish it. I’m just as surprised to have made it to 18, honestly. It wasn’t easy, but the important thing was that I made it.
So I’ve finally learned something valuable, and it only took me 18 years to come to this conclusion.
Disease doesn’t define a person. It’s what they do despite it that shows who they are. It’s how they fight it that reveals their character. It’s hardly ever easy to deal with it. But as a start, I can learn to separate the disease from my own self-worth, because it’s not tied to that. It never had anything to do with how valuable I am. It is an enormous part of my life and a strong force behind many of my frustrations, insecurities, and what have you. But it’s not who I am. My identity isn’t limited to my disease. I don’t want it to be with me, but I can’t change that I have it, at least, not right now. I can’t change the effects it has on me physically. I can really only approach how I adapt to living with it, in the best way I can, how I react to it.
Some days, it’s just too much for me to bear. It’s difficult to fight because it’s not a physical thing standing in front of you. It’s inside of you. That’s what makes it tricky to grapple with. But, eventually, I’ll learn to more completely accept that it resides in me. I’ll learn to accept the things I’m able to do in spite of it.
Writing this piece is my first step into that larger understanding.