For most CFers, we just want to be “normal” but sometimes you must be careful what you wish for. I was unprepared for adulthood. Once comfortable with the idea of dying young, I now struggle to adapt to living a longer life thanks to Trikafta. When I was first diagnosed with cystic fibrosis, I wasn’t supposed to live past the age of 8. And now I am expected to be like everyone else — expected to deal with the same responsibilities and have the same expectations of being an adult. No longer the sick kid unable to work, I’m now expected to hold down a job and keep up with the bills and responsibilities most people take for granted. 

This is the new normal for a lot of us CFers who never had to deal with any of this. How are CFers — who spend so much time being sick and being in the hospital, not asked to deal with anything other than just surviving —now expected to work and contribute to society? I’m not saying all CFers are ill-prepared for this, but for me, this complete 180-degree pivot left me a bit whiplashed and unsure of how to handle it. 

Preparing for the future comes easy for people who know what they want to be, but how do you ask someone who wasn’t sure that there would be a future at all? It might sound a bit macabre to say, but I got numb to the idea of a futureless future. This lack of caring about tomorrow left me a bit like a bag in the wind, blowing without direction, and now that I am looking at a future of endless possibilities, I’m left wondering what do with do with this newfound time. 

For me, the timing couldn’t have been worse — or better depending on how you look at it. I was given a brand-new life at the same time that I lost everything in a 2018 wildfire that destroyed my town. I had to figure out who I was and where I was going, with nothing left of my old life to hold onto. It was like my old life, my old identity, was ripped away from me. I was no longer that sick kid, no longer stuck in my old way of living. I was, to steal a line from Bob Dylan, a complete unknown. 

I don’t want to sound too pessimistic; I am truly happier with Trikafta. My life is far and away much better than it was less than six years ago, and I say that while hunched over typing in my RV trailer that I have lived in since the aforementioned wildfire. 

Despite the struggle to overcome this identity crisis, I am happy to say I have found myself a new life as a chef.  It’s a life of hard work and heartache where passion fuels my craft. At the end of the day, the kitchen has become my all-consuming life. Even though I have struggled (and still struggle) with adulting, I am happy in the hot kitchen — the scares, the knicks, the burns — it all fuels my life. I eat, sleep, and drink all things cooking. I like cooking, watching all the cooking shows, and sometimes indulging in the food itself. The latter is the one thing I still struggle with, as do a lot of the CFers — eating. You would think that as a chef, I would do nothing but cook wonderful meals at home for myself. But as with so many chefs, I don’t bother to cook anything and rather just eat greasy, unhealthy food because I just am too tired after cooking all day. 

During this change in identify, the one coping mechanism I use to rely on, alcohol, started to become a problem. I gave up drinking around the same time that I started Trikafta, and my whole life changed. I am happy to say I am four years sober and healthier than ever before. 

I think if we are honest with ourselves, we all struggle with adulthood, even those who have prepared for it their whole life. We all deal with the same struggles; it’s how you deal with them that defines you.

I chose to dive into my new career and my new life, unknown future and all. Even though I don’t know the answers, and the struggles never get any easier, the fact that I get to struggle with the unknown and the future is a blessing. 

Just recently, I lost a young man that worked with me to an accident, and the tragedy of this reminded me that I should be grateful for this chance to be burdened with the indecisions that everyone else deals with on a daily. Despite the fantasy that I used to believe, I realize that life is what you do with the time between sleeping and work. Because work doesn’t define you and sleep is what we all need — it’s those moments of self-doubt that make life worth living. And I believe life is made better by the company you keep. This is the secret — be the person you want to be and surround yourself with the people who keep you going. At the end of the day, it is a blessing to be able to struggle with life because we have got a chance to live it. 

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