Growing up, I knew my dad, Darien, was sick. I heard my parents talk about it but didn’t pay it any mind. When I was younger, he could drive, walk, and hear. As I got older, his health started declining, but that didn’t change our relationship one bit.
I was diagnosed with NF2-related schwannomatosis at age 25. I felt lost and confused; my life flashed before me. My mom told me that I was tested at birth and my family was told that I didn’t have the NF2 gene, so the diagnosis in my 20s was a complete shock! When my dad heard that I did in fact have NF2, he felt bad and somewhat heartbroken. He felt like he put this on me. When I saw how sad he got, I told him we are in this together! Our bond has gotten even closer, especially because we both see the same doctor at NYU. In a way, it comforts me to have someone to talk to about the occasional headaches and body pains and knowing that it will be okay.
Even though I don’t look ill on the outside, I do wish people understood better that I face many challenges every day. It’s hard to sit in a meeting at work and stay focused while my ears are ringing, or feeling pins and needles up and down my body, or the occasional arm and leg twitching or numb feeling that happens while eating or trying to write. People know that I have NF2 but I know they don’t understand it and how it affects me.
With my NF2, I have a small case of cataract in my left eye, which sometimes affects me when taking pictures. As a photographer, your eyes are basically the lens to that image you create. I have learned that I have to slow down and take my time when shooting, making time for my eyes to adjust. At the end of the day, though, my clients always tell me I exceeded their expectations.
With that all being said, my greatest struggle in life is to stop stressing and feeling anxious about having another seizure. That first seizure is how I found out that I had a meningioma in my brain. Even though that was three years ago, I occasionally get flashbacks about that day and sometimes panic. I am still learning that through breathing and looking back at all the blessings God has brought me, it will be okay.
Sometimes there are good days and sometimes there are bad days, but it’s a matter of taking it one step at a time. Take NF on your journey with you! If you want to travel, then go! If you want to be a pilot, do it! Don’t let NF discourage you from your dreams. And definitely don’t let it hold you back!
Sequoyah Daniel, 28 years old, lives with NF2-related schwannomatosis. She is a photographer and photo editor who lives in Brooklyn, NY. Her father, Darien, also lives with NF2-related schwannomatosis.
