Living on the Frontlines of My Battle With Cystic Fibrosis
I was born into a battle where my only two choices were to fight for the rest of my life or give up. Caught between that next crucial life-sustaining breath or expiring before I had even fully come into this world. Breathe in, breathe out. A simple task to most, but one that would become a thorn in my side for the remainder of my life.
I battled to live from the moment the cold, antiseptic-laden air brushed my fragile, newborn skin. I grew up always fighting this monster of a disease known as cystic fibrosis. Before I even knew exactly why I was fighting, I was in it for the long haul. I didn’t ask questions, I didn’t wonder about much of anything. I just did each medicine, each breathing treatment, each task that was handed to me by family and doctors alike.
It only began to occur to me just what I was up against as I got older. I began to understand the reality of my situation and the cold hard truth sat like a lump in my stomach. I wasn’t going to get better, I wasn’t going to just wake up one morning and not have CF. It was going to get worse and there was nothing anyone could do to truly stop it. Sure, medications and exercise and treatments may stall the inevitable, but it won’t stop it. Until a cure is found, all I can do is hope and pray and try my absolute best to keep CF at bay.
I fight a daily fight just to keep my lungs as clear as possible. Breathing treatments take up over an hour of my time day and night. Countless pills to keep vitamin and infection levels in my body at a somewhat “normal” range. Pills taken before any food passes my lips to ensure proper digestion. Avoiding crowds during the flu season which essentially makes you feel like a hermit, just so you won’t get a cold that turns into an upper respiratory infection that turns into pneumonia which lands you in the hospital.
I wish I could be exaggerating all this; and maybe some parts, I can. But it is true that a simple virus to most can be life-threatening to me. I may fight my hardest to not let CF stand in my way both physically and mentally, but genetically, my body just doesn’t have a strong defense or sense of fighting spirit when it comes to germs. So I just take the basic precautions and do all I can to avoid that prison I call the hospital.
I battle every day. Every breath is a gift. On days when breathing feels like trying to suck a thick milkshake up a tiny straw, I do feel slightly defeated. Sometimes it even sends me spiraling into a panic attack because my body knows it needs to breathe but my lungs just aren’t keeping up. Warning bells go off and my heartbeat quickens. I force myself to focus on something else, anything else, until the panic passes. It doesn’t always work.
I know I am a warrior. I know I’ve been through more than many people will ever face in their lifetime, but I’ve also seen others worse off than me. I’ve been witness to some scary experiences regarding my health. I know what it’s like to be behind those hospital entrance doors; I know what the inside of a hospital room looks like, staring at the same four walls for weeks on end. I can name every medicine I’m taking or ever taken in my life to the letter. I know more about medical terms and equipment than many pre-med students. I can shut off an IV pump and disconnect myself without the aid of a nurse (although I’ve never done it as it’s against the rules!).
Never have I gotten to experience being a visitor to someone in the hospital. To knock on their door and come in bearing gifts and balloons and chat for an hour or two before saying goodbye and walking back out the door. I have experienced the utter feeling of loneliness and quiet as they leave, the churning of panic in your stomach as reality hits that while they can walk out of here and go home, you can’t. You’re still trapped amid beeps and needles and codes and fear. That is something that is abundant in any hospital setting.
I am a warrior. Despite all I’ve been through and will continue to go through, I know I am strong. I have God, my family and good supportive friends on my side. I may live on the frontlines of my CF battle, but that doesn’t mean I will wave my white flag of surrender. I will fight with every last ounce of willpower in me. I am a warrior. And I always will be.
This post originally appeared on The CF Chronicles.
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