I am a chef and a person with cystic fibrosis. As many people with CF will tell you, food isn’t always our friend. What then would drive a person who has had such a love-hate relationship with food into a line of work that revolves around it? Well, I didn’t plan on it.
I was content in life doing theater work and barely getting by because I wasn’t worried about money or a career. That is, until 2019, when Trikafta® was approved and changed my life forever. I went from barely being able to hold down a job and constantly being sick and tired — and being tired of being sick — to being able to have the energy and ability to work and live a normal life. Once my health improved, I began to struggle with another issue — a crisis of identity. I was no longer that sick kid who didn’t have to worry about a job or a career. I had to figure out who I was.
One of the most surprising changes I experienced on Trikafta was that I felt hungry and wanted to eat. That led me down the path of why I enjoy certain foods and what makes one dish taste better than another. This change in appetite coincided with the pandemic, when theaters closed down and work dried up. I was gaining weight and wanted to know more about the culinary arts, so I decided to go to culinary school.
I have been working and going to culinary school for two years now, and I have learned so much about how food is prepared; yet my struggles with food remain. I work a lot and I am constantly on the go — which is a good thing because I have the energy to do so. But I don’t eat as much as I should. One of the many reasons why I used to struggle with food was because I had to eat so much to maintain my weight. For me, stopping to eat became a chore.
I am still struggling to make eating regularly a part of my daily life, even though I have successfully made food my career.
One of the positive things that has come from culinary school is that I have learned different styles of food from multiple cultures. Some of my favorite food to make is Asian cuisine. I recently made a delicious green chicken Thai dish that was spicy and delicious and so good that I ate the whole thing without thinking. I also fell in love with Italian food — pastas and all the different types of mother sauces that you can add to and make into different recipes. For example, you can add cheese to a béchamel sauce that goes great on a hot dog.
Despite all my culinary school training and all the fine foods I get to make and eat, there is nothing better than a good ol’ fashioned hot dog with jalapeño cheese smothered on top. Long before culinary school, one of my favorite foods was pizza. That hasn’t changed either; I still love to make pizza. The only difference now is that I know all the ins and outs of preparing pizza. I know so much of the art behind so many dishes.
Even though I still struggle to eat as much as I should, I enjoy cooking and am eating more than I did in the past. I used to not be able to finish my meals. Now, if it’s a truly delicious dish, I will eat it all without a second thought. Since starting Trikafta and going to culinary school, I have been able to maintain my weight, but I still need to gain more. Life isn’t as easy as it seems in the movies. It will take time.
I am trying to start a YouTube channel where I can document my struggle to eat more and help those who want to learn a few cool culinary tricks and improve their own cooking skills.
The most important lesson I learned from culinary school is that food is fun and shouldn’t be something I hate.
These past few years have been difficult for other reasons. In 2018, my hometown of Paradise, Calif., was devastated by a wildfire. It has been a struggle to rebuild my town and my life. I’m not including this to get sympathy, but rather to show that nothing is impossible.
Being sick was my identity for so long that trying to become someone new has been difficult; but the one thing CF has taught me is that no matter what, CF patients are some of the strongest and most determined individuals. We can overcome anything. People with CF have proven so many people wrong. I was told I wouldn’t live past the age of 8, and I just celebrated my 35th birthday.
I have learned so much these past few years and even though there are still trials, I know that I can overcome anything. Because if past is prologue, I am capable of anything I put my mind and my heart to. I hope that the next time I write a blog, I will be able to provide more solutions to eating problems. For anyone out there struggling with food, you are not alone. And know that this community is our community, and we can overcome anything.
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