🫁 Snapshots in Living Part 3

These are snapshots from my brain after 4 years on Trikafta.

May is Cystic Fibrosis Awareness Month. This is the final snapshot of my life since I started taking Trikafta in December 2019 l’ll be sharing this year.

Miss the earlier snapshots? Click for Part 1 and Part 2

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Act 7: The Sad

I knew the death announcement post was coming: Travis has died. For prominent social media advocates sharing their cystic fibrosis journey, the posts often become less frequent during the last months, weeks, and days as they shift their focus to survival. I could tell he was sharing what he could along the way—but even with a community of support—sharing in those last days wasn't the priority.

Last week, Travis Flores died at age 32, awaiting a kidney transplant. He had experienced 3, yes 3, double-lung transplants. Travis was a huge advocate in the cystic fibrosis community. He lived his authentic life as a gay man and led his #YellowHeartSquad. His loss will be felt in our community; to understand the loss, read the comments on the post.

Sadly, I know his loss won't be the last. This is why the Cystic Fibrosis Foundation's motto continues to be "Until It's Done." While many of us benefit from genetic modulators like Trikafta, many in the community don't. We still need to work to find solutions for them.

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Act 9: The Happy

My friend Mimi is working on her dream of becoming a standup comedian. Like me, she is now thriving on Trikafta and gets to pursue her dreams.

I will pursue mine, too.

Not long after graduating from college, my dad went to a work event and brought me a Google long-sleeve t-shirt home. I wore that shirt until there were holes. While I had gone into education, I wished I could have worked for a start-up like many of my friends, but this was pre-Obama care, and the certainty of good insurance in the Web 2.0 world wasn't substantial. I had to be practical.

When I was 22, I took my first job out of college at Woodbridge Senior High School, the same school I attended for the last two years of my high school experience. As a military brat, I moved around a lot as a kid, so returning to somewhere familiar was interesting. Becoming a teacher seemed like the best career move for someone with cystic fibrosis. I knew I would eventually get sick and need systemic support for when it was time to get a lung transplant. Being a state employee meant some financial security during that phase. Now, that phase isn't going to be a reality.

I quit my job.

After 20 years in Prince William County Schools, I am leaving the field of public education. It's not because I dislike K-12 education or think it's too hard—I know many people feel that way lately. Instead, it's because I have the exciting opportunity to try something new. I have the freedom that good health provides to explore new things. A couple of years ago, I started to look ahead at my life and realized that I have at least 20 more years of work ahead of me. Twenty years is a long time. I could keep going and stay safe and secure in the Virginia State Retirement system or try something new and take a little risk.

Have you heard of multipotentiality? This is the definition of me. I like to dive deep into new things every so often. In my early twenties, I went through a foodie phase; in my late twenties, I went through a photography phase; and in my early thirties, I went through a phase of traveling. I nerd out on all the aspects of these hobbies—recipes, what gear to buy, and how to get the most out of credit card points. Then, in my mid-thirties, I got a little too sick to have deep interest phases and had to focus on my health and work. Thanks to Trikafta, like so many people with cystic fibrosis, I have a new lease on life and get to try new things again.

So yes, like many, I am leaving public education. But I am not running away from it as much as running to something new and exciting. I am excited to dive into a new career, something creative, and get nerdy with it. I am excited for a new deep dive.

I am going after my dreams for myself and those in my community who can't—for Carly, Tori, Leah, and Travis…….

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May is Cystic Fibrosis Awareness Month. Thanks for following this series this month! Here are some links to learn more:

• THE CYSTIC-FIBROSIS BREAKTHROUGH THAT CHANGED EVERYTHING: Read this for another community member’s perspective on Trikafta life.

• What life is like on the new ‘breakthrough’ cystic fibrosis drug

• Cystic Fibrosis Foundation (USA)

• Cystic Fibrosis Trust (UK)

• Boomer Esiason Foundation

• Emily’s Entourage