As a child, I had café au laits on my body and was given extra time on tests from kindergarten all the way through college, but I wasn’t diagnosed with NF until I was about 30 years old.
I was raised in a happy home with so much love. I got to travel around the world. I was told to never give up, and I was brought up by the most amazing woman in the entire world. Losing my mother to melanoma suddenly and unexpectedly in 2016 has been difficult. Shortly after she passed away, my tumors got worse and I lost mobility in my right arm. I can’t do the things I used to do, like play tennis or ride a bike. But I still cook, and I still take my photos. It’s a struggle because I’m in pain, and it’s a struggle because my mom isn’t here. But I’ve learned that I’m much stronger than I think I am and I’m a fighter.
At times I’m very hard on myself and feel like I can’t get things like everyone else. I’m not as fast as I used to be; changing the lenses on my camera can be a struggle, and holding heavy equipment with one arm sometimes hurts, but I manage. I push through because I love what I do, and I’m good at it.
Some of the happiest moments in my life have been my professional accomplishments. Working for two weeks at the Sundance Film Festival, and shooting with just one arm, that’s something I’m immensely proud of. If I struggle with some of my camera equipment, I’ll ask someone for help. And people want to help, it’s a beautiful thing.
I want to inspire people, and I want them to know that I’ve learned to adapt to my new lifestyle. I hope someday I’ll get mobility back in my right arm and have less pain, but I also want people to know that just because I have an illness and can only use one arm right now, it has not stopped me from doing my job and living out my dream as a photographer.
We are all incredible people, we are all beautiful, and we should always live life to the fullest and always follow our hearts. And we should never let NF define us.
Marisa McGrody passed away from complications due to NF at the age of 39. She was a photographer and lived in New York City.
