How my parents and New York City taught me courage in life with CF

I could just smell it. I didn’t want to breathe it in; no one did. The air was as thick as the winter coat I was wearing. The smell stabbed at my skull like a lobotomy.

My mom and I got off the boat, and she made sure I pulled my little scarf up over my mouth and nose so that I didn’t breathe it in. It didn’t matter, though, because the wind was passing through hard and fast, carrying the thick air and the smell with it.

It was New York City, in the late fall of 2001. The city was still recovering from the 9/11 attacks, and the ashes and debris of the World Trade Center were still circulating in the air. What I smelled most, even at 9 years old, was the smell of mass death.

I’ve written fairly extensively about my love of New Jersey, and how my home state inspires me to persevere through my battle with cystic fibrosis (CF). However, I was born in New York City, and it also has nurtured my courage in facing hardships with CF.

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My doctor has always been located in New York City. Back in 2001, my CF clinic was located at St. Vincent’s Hospital on 7th Avenue in Greenwich Village, Manhattan. Though they’ve since moved around the city, I spent the first 17 years of my life traveling to downtown Manhattan with my parents, sometimes by car, sometimes by boat, and sometimes by the PATH trains, where my dad worked.

This time, we stuck with the boat, as the subways were still a nightmare. Trying to breathe through the chemical concoction of regular subway air and the city’s post-9/11 haze would have been even worse for my health.

Earlier in the summer of 2001, I made quite a few trips to the city with my parents and got to explore it a little more as I was getting older. One time, my mom and I walked from St. Vincent’s Hospital all the way to Strawberry Fields in Central Park to see the John Lennon memorial. It was a beautiful and warm day. I wasn’t made for the long walk, but I’ll never forget the day and what the sky looked like. New York City, in my mind, was still pure and full of possibility.

It looked the same on the morning of Sept. 11, just a few weeks later.

On 9/11, my mom and my uncle, both of whom worked across the street from the World Trade Center, made their way to my nana’s house in the middle of Jersey City. When she returned home, my mom was covered from head to toe in debris. Like the child I was, I had so many questions about what was happening. To her credit, my mom tried answering them as best she could. We could see the smoke from our house.

That night, my dad went to work for the PATH trains. He worked nights, so there was nothing abnormal about him leaving late, besides the circumstances he faced. Although transportation was suspended, he still had to report to work and help out in any way he could.

Every day, I watched both of my parents head to work and face terror, anxiety, and even more possible death for months after Sept. 11. The threat of terror loomed over the tri-state area for months until some semblance of normalcy slowly returned.

New York City, just like my parents, was courageous. Slowly but surely, the police and fire departments cleaned up ground zero where the World Trade Center once stood, and people got back to work because it’s what they were called to do. They sought to make life normal again.

Every time I’m in the hospital in New York, I think of that little boy getting off the boat with his mom and seeing mass destruction and smelling death. I still think to myself, “If my parents could get through worse, I can get through this.” If the city could survive one of the darkest days in humanity, then I sure as anything could get through sepsis, pneumonia, or whatever infection I was fighting.

I can’t back down. I have to be courageous.

Note: Cystic Fibrosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Cystic Fibrosis News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to cystic fibrosis.