The Many Colors of Cystic Fibrosis: Purple (Part 2)
In my previous article, I explained the importance of the color purple, including the annual Great Strides walk. Let's continue to unpack the impact that purple has on my journey with cystic fibrosis.
Purple ribbons represent Attention Deficit Hyperactive Disorder, or ADHD. ADHD falls under the umbrella of neurodivergence, a term that means the brain processes things differently. I identify as a neurodivergent person due to my generalized anxiety and use different techniques to cope with my differently-abled brain every day!
Some coping skills include body doubling, a tip that aids distraction by sitting with another person. I try to do things one step at a time instead of multitasking or seeing the broader picture. I also rehearse events before they happen.
Caregivers are yet another cause represented by the purple ribbon. My mother is my primary caregiver and the person who taught me all of the coping skills listed above. Without my mother's devotion and strength, I never would have been diagnosed with cystic fibrosis. She's the one who documented all of my symptoms, and approached dozens of doctors with my possible diagnoses. I think of her as a child life specialist without the certificate. She has this natural ability to educate and inspire, and she's held my hand through 29 years worth of hospital stays. I owe her the world.
In the hospital
"Code purple" varies from hospital to hospital, but usually represents a missing child, a hostage, an explosive device, or a N.I.C.U. emergency. Needless to say, the color purple is not a good thing in a hospital setting.
Movies, on the other hand, always pass the time when I’m stuck in isolation. Can you believe “The Color Purple” starring Whoopi was Oprah’s first film? That was the perfect movie to watch between chest physical therapy sessions. I distinctly remember when the character Magenta was introduced on “Blues Clues” because the child life specialist asked if I liked the color purple. Not to mention, every 90s kid had their own purple dinosaur, Barney.
Purple was not identified as a color of the rainbow by Isaac Newton. Again, rude. Because purple is the combination of blue and red, many countries struggle to gain access to the color. Only the wealthiest people enjoy purple clothing and other luxuries. I would argue that I'm rich in insurance because I've managed to order all of my medication this month!
In summary, purple can be seen throughout my journey with cystic fibrosis. Clumps of purple roses have decorated my hospital rooms. Purple potatoes have filled my plate, and the song “Purple Rain” has filled my lengthy nebulizer treatments with beautiful music.
How many purple items can you find in your journey?
Have you had a flare on Trikafta?
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