In ancient home videos of the Dell family, there’s shot after shot of my sister Shelby clinging to me tightly while I cringe. That was a good illustration of our relationship, until recently.
I was diagnosed with cystic fibrosis a few months after birth, when Shelby was just 3 years old. All I ever knew was CF, so I spent my early years undisturbed by its presence. Meanwhile, Shelby used to tip-toe down the hall at night and listen at my door to make sure her sleeping baby brother was still breathing. The disease, to this day, tortures my sister’s mind more than it ever did mine.
We spent our adolescent years in disharmony, as many siblings do. As military brats, we often had only each other to count on during moves across the country. Once road trips were over and we’d settled into new friendships, the breach between us would open again. But she was always there when I needed her most.
When a middle school bully threatened to kick my butt after we got off the bus one day, I threw down my trumpet case and began to roll up my sleeves — mustering as much bravado as a sixth-grade nerd could. In a blink of an eye, my sister swooped upon him, her baby-blue Beatles tin lunchbox a blur of fury as she rapped it down upon the bully’s head and shoulders. Six years later, she held me as I sobbed out a story of high school bullying and the black-hole-dark fantasies of self-inflicted death that wouldn’t leave my mind. This time, I didn’t cringe or pull away from her hugs.
We’re very different souls. Shelby prefers to sit in her car for long drives and listen to music, partaking mostly in small-dosed conversation. I consider idle time to be wasted time and time alone to be excruciating. I will talk, talk, talk until you plug your ears — or, as my sister does, turn up the volume on the radio to drown me out. So, naturally, we weren’t inseparable, and that was fine.
Other times, we couldn’t stand each other. During a particularly vicious argument with my mom about my stubborn noncompliance with CF treatments, Shelby barked out that I was being unfair to them, stupid to not take care of myself when others depend on me. She told me to listen. Instead of her car radio shutting me up, her words did the job. I blurted back some frantic insult, I don’t remember what, and stomped outside to kick around some rocks. The anger was a burning coal in my chest. It was my parents’ job to nag me over my bad habits. It most definitely was not my sister’s job to humiliate me by ganging up with my parents in arguments. But she wasn’t really sabotaging me. Rather, she was trying to stop me from sabotaging myself. Antagonizing my greatest ally only served to further my self-destruction. My body continued to break through my 0wn actions.
In June last year, I was struck by a blood infection in the middle of the night as I slept in the ICU. This time, my sister wasn’t at the door to listen for my struggled breathing. When I woke the next day, it was in a state of psychosis — blinded by a red fury. Mouth dry from heaving for extra air, I demanded Shelby find me a specific type of chewing gum. She searched multiple stores while I stayed in my bed and griped at my mom about how long she was taking.
Shelby finally returned with the gum and a kitty-shaped neck pillow to cheer me up — I love cats. To show gratitude, I rolled my eyes and threw the pillow to the foot of the bed. As I continued to go berserk (I only remember hallucinations during this time) and tear into people with my words, she played with my hair and gave me back massages.
When the carbon dioxide left my brain and I came out of the psychosis, my sister had only a few days before she had to move to a different state for school. Where we once comfortably drifted from each other, we were now being torn apart.
We met again a year later. I had new lungs from a transplant this time. Where she once held me as I cried, I now held her. I told her the nightmare was over now and she could stop worrying about her baby brother. I know she won’t ever stop worrying, though, because it’s her job to look out for me. I no longer take for granted the burden of being a CF sibling, or the beauty of that relationship.
Note: Cystic Fibrosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Cystic Fibrosis News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to cystic fibrosis.