The Many Colors of Cystic Fibrosis: Grey (Part 1)
Last updated: February 2023
My journey with cystic fibrosis (CF) has been very colorful. I’ve had to expel and capture my green, sticky mucus. I walked alongside the CF community at the Great Strides Walk in my purple t-shirt. The beige color of my skin was partially to blame for my late diagnosis, and I’ve coughed up red blood! As a passionate musical theater fan, I prefer to use something happy and musical to remember this journey. In this column, I use “Joseph and the Technicolor Dreamcoat” as a guide.
After writing about black, beige, yellow, purple, brown, clear, green, red and blue, let’s talk about…
Aging and CF
I turned 30 on December 30th of 2022. When I was diagnosed at age five and told that I wouldn’t live to be ten, my mother and I decided that every birthday needed to be celebrated… BIG TIME. Lots of friends and family sent me messages on my birthday, “Get ready! Your body starts to fall apart at age 30.” I laughed along, but the reality is my body started deteriorating well before my 30th birthday.
I understand that most people are not exposed to chronic illness and health trauma at an early age. Therefore, their lack of understanding is reasonable. However, I experienced back pain and other ailments as early as elementary school. I listened to statistics related to my life span, and I still have PTSD related to things like pulmonary function tests.
Hence, aging is a gift and a goal. I will celebrate every birthday and every grey hair.
Parenting and CF
My mom is a wonderful mother and the best caregiver a patient could ask for. I always danced to the beat to my own drum, which meant mom had to dance a little differently too. Parenting groups related to CF made this complicated.
Other parents would isolate their children, restricting them to a life of medicine and caution. Not only did my mom encourage me to pursue a normal life, she made medicine fun. Granted, this was back in the 90’s when virtual and Facebook groups did not exist. Things have improved since then. Still, things in the chronic illness community can be very black and white. My mom always found a happy medium, a grey area.
She had to figure out her own way to do things, and she did. After all, she knew me the best and always had my best interest at heart.
“Grey Power” refers to elderly people and their political, financial, or social influence. I may only be 30 years old, but due to long term disability, I acquired social security back in 2018. In a way, I identify as an elderly person. I’ve spent time in a wheelchair, on a commode, and I enjoy eating dinner at 4:30 PM. (That was a joke.)
In the next article, I will explore the grey awareness ribbons and the power of monochrome. Can you think of other grey objects in your health journey?
Read more of Nicole's "The Many Colors of Cystic Fibrosis" articles here.
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