What I’ve Learned From Others with CF

May is Cystic Fibrosis Awareness Month – everything has a month or week these days – and rather than writing about myself, how much time I’ve spent doing treatments, why we need to balance drug development with disease maintenance, and something super cliché, I’m going to talk about what I’ve learned from some of the hundreds of people with CF that I’ve come to meet through my work.

Everyone is unique in his or her approach to fighting the disease. Some do it in the public eye, others take it all in and deal with it themselves.

There’s no right or wrong way to attack CF. It’s all about being able figuring out the best way to breathe, no matter our situation.

I’ve learned that it’s okay to sing at the top of your lungs. Julia does it. She uses the one thing she loves more than anything else to lead her through her life with CF. She uses her talent to inspire others to be wonderful and successful, and she’s taught me to stick to the things that I love doing.

Jerry has taught me that we are the heroes of our own stories. He takes every challenge head on and says that your fight is what makes you a hero. He is someone who has accomplished so much in the face of CF and transplant. He teaches all of us to feel good about our accomplishments.

Lea has taught me that we all need to be feisty. She may not seem that way on the podcast, but she never settles. She’s always striving for more – she wants to be better, healthier and always more successful. She embodies everything that is resilient about a person with cystic fibrosis.

It’s okay to smile! Tiffany faces everything with a smile on her face. Even when she craved oxygen more than anything in the months leading up to her transplant she found the best in life. Her desire to achieve one little thing each and every week brought her life and has taught me that even when life gets me down, there is still, above all else, positivity in living.

I’ve learned to see things as they are and what they mean. Amy searches for answers in patient experience, dialogue and writing. She leads groups of patients and wants to push our understanding of CF. Above all else she wants every person with CF to have a successful outcome regardless of where they stand in their fight. She has taught me to be relentless in my pursuit of CF education.

Other people with CF have taught me that it’s okay to be overwhelmed, frustrated and sad. It’s not an easy life and it’s okay to complain. I always say that it’s better out than in with the mucus I’m constantly coughing up, so why not apply the same principle to emotions?

People pour their hearts out into their blogs, YouTube channels and Instagram pages. It’s all worth reading.

Tara advocates for Canadian organ donation, Josh pushes people to be more active with exercise and Somer sees everything with love attached to it.

No one person is pushing back against CF better than anyone else.

People with CF use whatever skills they posses to push through life in the face of crippling adversity, and we do it because it’s the only thing we know how to do… and perhaps the reason we have CF Awareness Month is to celebrate all of our journeys down a winding, twisting road to a world free to cystic fibrosis.

image