Choosing To Live
I have always been a very cautious person, but having cystic fibrosis has made me more anxious over the years. As I have grown older, I feel like I have paranoia. I know a lot of it stems from the fact that I have made it farther in life than doctors always told me I would.
I was supposed to die and I can’t forget that. My mind cannot take those words out of my head. Sometimes I feel like I hear a clock ticking over my end.
Living with CF on my terms
My time will come--but when? I’ve always tried to live my life without regret because, realistically, when I do die, I want my life to have been lived on my terms and not CF. But, there are those times where I feel like CF is winning the battle mentally and I need a break.
How can you run from yourself because CF lives in you? It is a part of who you are every day and CF is you. My reflection in the mirror is a person with CF.
I used to be anxious and I didn’t want to do anything. I was scared of catching something and getting sick, scared to go outside or be around people. My lung function kept dropping. I was filled with panic because I wanted to live.
One thing my friend Sal told before he passed is, “What are you doing? You die, so what? You’re alive now so go out and live!” He was a person who, at end-stage CF, denied a transplant, went out on his terms, with his oxygen, and with his pains. He went on cruises, vacations and did things I never would. Before he passed, I promised him that I would go “live” and not be scared of CF.
Having CF means a lot of things to each and every one of us. We all handle stress differently and we each face depression and anxiety. This disease is very draining on a person and our families who helplessly watch. But it’s our life, it’s the cards we are dealt. It’s our job to let the world know that having CF is hard, but we can do things and we can do anything we set our minds to. We have limitations, but that shouldn't keep us from living and fulfilling dreams that we have.
Embracing life with CF
You only live once. While we struggle, healthwise, to do things at times, we are resilient and we are powerful. Not everyone can handle what we have had to with CF.
So live! Take a stroll, start a new hobby, rebuild friendships, and find love. Travel if you can--and if you can’t, slow down and look at the stars or just enjoy something you love to do. Just because we are sick, doesn’t mean we can't find our own peace somewhere and doesn’t mean we shouldn’t try to find it. In honor of Sal and my other CF friends who’ve passed and those that are still here, I am going to do my very best to live and not be scared to do it.
Have you (or a loved one) been experiencing any negative side effects from Trikafta?