Thanks to COVID-19, a work furlough forced me to slow down the pace of my life and I'm okay with that. Here's how I've let go of needing to be productive during this time.
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After years of being treated as an oddity, I want people to acknowledge that I am a Black girl with cystic fibrosis. I want my voice to be heard.
I advocate for my son who has cystic fibrosis by sharing his story to increase awareness. From new friends to legislators, I tell as many people as I can about this disease, how it changes your life, and how we are fighting this thing head on.
I have learned that I can live a full life -- including marriage, cooking, and skeet shooting -- despite my rare/nonsense cystic fibrosis mutations. Even if love, hugs, and my sense of humor are all I have to give on some days, then I'm OK with that.
I used to think that people would pity me and see me as weak, if I told them I had cystic fibrosis. Eventually, I learned that keeping this disease a secret was a burden I did not need to carry.
The convenience of growing up and living in a small town is that everyone knows your cystic fibrosis story. But, moving to a new city doesn't mean you have to greet everyone with a monologue about your illness. Wait until CF creates an opening.
Hindsight is 20-20, so I wrote a note to my younger self to explain all the things I wish I had known when I was teenager coming to terms with my cystic fibrosis.
After I was diagnosed with cystic fibrosis at the age of 21, I was eventually able to find a way to involve myself in the CF community by doing something I loved -- golfing. Along the way, I met some incredible people who showed me the importance of chasing the moment.
Friendships are an important aspect of life, but they are especially meaningful when you have a disease like cystic fibrosis. By finding a group of people who take the time to understand what I'm going through, I've been able to maintain a strong support system through the ups and downs of life with CF.
I don't make many plans anymore, because having cystic fibrosis means I never know how I'll feel from one day to the next or what I'll be capable of doing physically.