“He who does not know how to look back to where he came from will never get to his destination.” — Dr. José Rizal

I was a 19-year-old Filipino American with cystic fibrosis when I recognized my duty and purpose as a CF kababayan, or Filipino compatriot. That is something that can be very hard to prioritize for any person or family affected by cystic fibrosis. It’s easy to get caught up in life’s breeze and forget the everyday battles that you have to suffer, the common bubble that we all have to live through. But tirelessly suffering and fighting through these struggles as a Filipino American were the distinct hardships that separated me from the rest of the CF community. 

When I was hospitalized at Children’s Hospital of Orange County (CHOC) in October 2024, that was the moment when everything changed me. It felt different than just another health situation where I felt like I needed to perform better for my health. So, after waiting a few hours in the ER and being finally admitted to my hospital room, I broke the silence and started to make a simple prayer for a quick recovery. I could hear the faint tap of bamboo poles in my head, and so I began to follow that rhythm. 

During the first few days of my hospital stay, I entertained myself through my love for my Filipino culture and heritage. During my hospital treatments, I would listen to a lot of Original Pilipino Music hits and the traditional music of a rondalla, or stringed ensemble. Whenever I held a recorder in my hand, I would play a bunch of Filipino folk songs, and that started to become my own version of how I’d personally view the pulmonary function tests. Nurses from the halls could hear me play, and one Filipina nurse even saw me as a “representative” for the local Filipino American community at CHOC.

The truth is it’s been tough being seen as the only Filipino or Asian American with cystic fibrosis wherever I was hospitalized, when there may be many of us in the CF community.

There was a time when my culture and my experience with CF were the hardest parts of myself to acknowledge. But embracing them has become the proudest way I could represent myself as a CF kababayan.

The nurses and medical staff are important people; I am definitely grateful to meet and talk to them whenever I am hospitalized. These people have dedicated their whole careers to saving lives, and I wouldn’t be the happiest person living up to their potential and responsibilities without them. However, the nurse who had the greatest impact on me throughout my fight against CF is my lola, a Filipino term for “grandmother” in the Tagalog language. When my lola visited me at CHOC for the first time, she was very shocked by how much the campus had changed since the last time she worked there as a nurse.

As a registered nurse, my lola worked 10 years of her 25-year career at CHOC, treating CF patients as part of her job. Little did she know that more than 30 years later she would be returning to that same hospital to visit her apo, or grandson, with cystic fibrosis. We spent more than two hours talking and playing our traditional tile game of Mahjong. It felt soothing to have her with me.

Even as a retired nurse, whenever my grandparents had to watch over me, my lola would cook a lot for me — mostly Filipino dishes like chicken adobo, sinigang, kare-kare, and pinakbet. She knew how to manage my enzymes and always ensured I took them before eating. My lola didn’t just take care of me because my mother asked her to. My lola took care of me because she deeply loved me as her grandson and as her own family patient living with CF. She took care of me because she knew my struggles and everyday battles as a CF patient from her past experiences as a nurse. She became my biggest inspiration and heroine — one of the most significant contributions to the revolution I continue to lead against CF.

Through the tireless battles that I’ve fought and persevered through at CHOC, I came to learn that being a third-generation Filipino American with CF gives me more strength every day to fight against the respiratory and pancreatic disease. I am a leading kababayan for my own community. Every day is a revolution to breathe, and you are the leader. Mabuhay!

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