In December 2019, I started taking Trikafta. I had always taken advantage of new cystic fibrosis medicines and therapies that became available but always hoped for something a little more than symptomatic treatments. With Trikafta, I was able to experience a life I had always hoped for. A 12% increase in lung function meant no more sleepless nights coughing, and with support from my care team, I even stopped my daily vest and nebulizer treatments in lieu of running and working out. The last time I did a nebulizer or my vest was July 2020. I am currently living a life of my dreams — Trikafta has allowed me the opportunity to not feel trapped and restricted by my own body. It has allowed me to feel as if I was on a level playing field with my friends and co-workers.
But of course, my brain can always find something to worry about, even when things are going relatively great. I know I am not the only one who suffers from this aspect of being human.
How do I now balance this new feeling of physical limitlessness (at least relative to before Trikafta) with the 25+ years of mental anxiety, worry, and pain I experienced? What in the world am I supposed to do with the fear now? How do I make decisions for my family’s future when my brain is still yelling at me that tomorrow will not exist?
Even with a bright future ahead of me, I still make many decisions, both big and small, with a scarcity mindset. If my future is scarce or limited, I should make decisions now for my family so they are comfortable when I am gone.
This is most apparent when it comes to managing finances with my wife since I know how much influence our emotions have on the financial decisions we make. I tend to over-prioritize saving money to the point where I am willing to make myself unhappy or uncomfortable because every dollar I save today might be a dollar in the pockets of my wife and future children later.
Despite having a successful career and stable financial outlook, I continue to make decisions and reassure myself of those decisions based on the assumption I will most likely get sick and have to stop working. Frankly, it is also this “conservativeness,” as I like to call it, that has caused the most tension in my relationships. I am sure I am not the only person with CF with this thought pattern, but it’s increasingly apparent how deflating this has been in my life.
Turning that thought pattern on its head, I am reminded that I’m living out a life I could have never dreamed of — a successful career, married to my high school sweetheart, planning to start a family, and surrounded by an incredible community of friends. I deserve to take advantage of my financial independence! I should live in the now and soak up the joy and happiness around me. Put money toward the things that make me happy! If I were to speak with a CF “elder” on rules of living with cystic fibrosis, I am certain they would agree with me.
This is the dissonance jostling around in my head, and I know the correct answer is somewhere in the middle — similar to the dreaded “it depends” response when you want a specific result. When it comes to planning a future with my wife, I will always be searching for that correct answer.
In the meantime, I have found a few things that have helped me grapple with the baggage of my “old” CF life alongside the hopefulness of my future:
- I got real with what is bothering me. If this blog isn’t evident, I think getting real with yourself about your vulnerabilities is an overlooked but critically important activity. When I understood the perspective that I approach the world with, it made even the most challenging conversations easier to navigate. Despite how “universal” financial wellness is in today’s culture, it is underpinned by heavy emotions and differences of opinions.
- Working together is not easy, but it is imperative. My wife and I come to the table with very different lived experiences in dealing with finances. It is my responsibility to respect her wants and opinions as much as it is her responsibility to respect mine. The only sustainable way forward is together.
- Making a few informed and intentional financial decisions made the rest easy. We decided on where 90% of our money should go each month (at least conceptually) so now we only need to discuss what to do with that 10%.
- It is immoral to have the opportunity to experience joy and not take advantage of it. If you resonated a little bit with this post, this one is for you. I give credit to the author Bob Goff. Growing up I assumed my life would be cut short, and now I’ve been given the opportunity to live without that fear. I owe it to every other CF patient before me and those still struggling to take advantage. Organizations like the CF Foundation have worked hard to allow people like me to experience this freedom — so take advantage of it!
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