Being Strong

Just over a year ago, still in high school, I had to write a paper about something that changed me- for better or worse. This is what I wrote about. I titled it "Being Strong".

“Mommy, I can’t breathe.”

            The year was 1999, in late March, as my 5 year old body went from playful and energetic to fighting for every breath. I had already been diagnosed with asthma, which at the time explained my frequent episodes of wheezing and breathing trouble. But that was not very high maintenance, especially since I was young; my body could bounce back better in those days with simple treatments. But asthma was soon to be the least of my worries. It was the start of a whole new life, though I did not realize it at the time. Late one night, my old trailer home had gone dark and silent; I suddenly awoke, desperately trying to catch my younger sister’s attention. Confused and groggy, she went to parents’ room and alerted them to my sudden panic. As the lights turned on and I could see her face, I released my terror and allowed it to consume my mother, uttering four words- “Mommy, I can’t breathe.”

            Soon after, I was lying in the Elkhart General Hospital, in the pediatrics ward. It was an easy diagnosis in the end, after a few chest x-rays and oxygen saturation tests– I had Atelectasis. The lower lobe of my left lung had collapsed, completely full of mucus and causing my abrupt drop in lung capacity. With shallow breaths, I took in my surroundings, trying to be strong for my mom. I was only about 5 years old, but I knew that I did not need to be afraid and the whole family needed me to be strong. The first time the needles came, my mother was almost hysterical at the idea of my pain and has to leave to ‘fill out paperwork’. I watch in amazement as they slip the thin needle into my right wrist, stop, and remove it, explaining that ‘it will be ok, we just missed, and we have to poke you one more time’. Finally, I am set up with some medications in my wrist and the crook of my elbow and a glowing, soft clamp-like device that measured my blood’s oxygen saturations levels. I didn’t mind, I just watched. It was as if I knew that something bigger was to come, and I just had to hold on for the ride.

            Though the needles and the tests and the attention did not seem to phase me at all, there was one aspect of life in the hospital that I could not stand- the nasal tubes for my oxygen- they were ugly, inconvenient, and a hassle in the mind of a fairly active 5 year old. I was only allowed to remove the tubes to blow my nose. I blew my nose whenever believable. One such day full of ‘blowing my nose’ yet again, I fell asleep with the tubes on my chin and the oxygen flowing into my mouth. About 15 minutes into my blissfully comfortable sleep, my mother glanced at the machine showing my oxygen saturation levels. The number had gone up, enough to urge her to call a nurse even. A few x-rays and a mask for oxygen later, it was confirmed. My sinus cavity was 100% blocked, and I was to prepare for surgery. In the questionnaire for pre-surgery knowledge for my doctors, it asked if I had Cystic Fibrosis. My mother had never even heard of that, and was not sure how to answer. The doctor suspected enough to do a few tests. My mother did not know what they were going to do, why they were doing it, or how life would change if the results were positive.

I sat in the lobby of the hospital with blankets piled high in the attempt to cause me to sweat. This sweat could be tested for sodium chloride levels, which are high in those with CF. The test was positive, but not by a large enough margin to convince the Cystic Fibrosis specialist completely. Doctor James Harris ordered a fecal sample as well as a fasting blood draw. I watched patiently; I could be strong. My mom was not, however, and almost passed out. Nothing pointed to having Cystic Fibrosis, and the specialist figured it was possible to get a false positive on the sweat chloride test. He made the final decision and ordered a genetic study to be done. Shortly after, my mom received a phone call that brought her to her knees, sobbing for the unknown. She would not go into this blind, however; she did research and found that the average life span of one with Cystic Fibrosis was approximately 16 years- her oldest daughter had possibly lived half of her life already. I was not aware of the risks, though. I just knew that I had something that would make it harder to breathe for the rest of my life. Doing my percussion therapy and nebulizer treatments would be habit and my mornings would begin an hour earlier to make time.

I used to be afraid, deep inside. I used to cry while I did my special percussion therapy. I used to hit and scream and throw tantrums if my mother told anybody I was different. I used to hide my disease beneath a charming but shy smile and youthful energy and fun. I used to be ashamed. Today I do my own research. I go for blood work every six months to make sure I am digesting and absorbing nutrients properly and do not have diabetes caused by mucus blockage in the pancreas. I do treatments to keep up what health I do have and learn to manage my time when I miss school due to illness. I get good grades, have a driver’s license, and keep a steady boyfriend. I entertain my friends with my percussion therapy jacket and teach them the sign language alphabet for when I can not talk during treatments. I tell people myself that I am different, that I am special, and I wear it with pride.

I may have Cystic Fibrosis, but that does not mean I can not live. Through the entire process I quickly learned that you do not always have to be brave. You can let things hurt, you can be scared, and you can get through it. My motto has become “We feel pain and sorrow and fear because we are human; we push through it and survive because we are strong”. I can be strong even if my body is weak, and I can be proud even if I am different. Am I scared? Absolutely, but I do not have to live in fear. My current family and my future family will one day live without me, and I could land in the hospital any day. But that does not mean I am not strong. Anybody could learn the lesson I learned when my life changed completely. Push through the rough times and live- because that is what strength is.