Neurofibromatosis is something I've lived with my whole life. While people may have teased or stared at me, it's because they don't know [about NF]. I wish I knew more about NF as a kid, so I could have educated people. Now, knowing there is a whole community of others out there, just like me, makes me want to share my story.
I was diagnosed with neurofibromatosis as a young child, when my pediatrician noticed that I had multiple café au lait spots. However, NF only started to become real for to me in middle/high school when I started developing multiple neurofibromas. This is when I experienced my first struggle with NF, as I was bullied because of the visible nature of the fibromas. I had a period where I hated that I had NF, feared what the future may bring and wondered, “Why me?” Looking back, I am now grateful for these experiences as they made me a much stronger person and taught me to be compassionate to others who are struggling with life’s circumstances and those who may be outsiders in today’s society.
If I see NF as a disease I am beaten by it. If I see NF as a part of me, it becomes a part of my journey and I can learn from it and grow stronger because of it.
Growing up, I wanted to be a basketball player. Alas, I was gifted with neither the height nor the athletic skill needed to play basketball, or even most organized sports. I wanted to be a writer, then a teacher; I wound up being a librarian-pretty close! I think that there were many things I dreamed about as a kid that, for whatever reason, didn't come to pass. But also I'm doing things I never would have imagined!
My first encounter with neurofibromatosis was long before I ever realized what it was. Before I can remember, when I was learning to walk, me left leg collapsed under me, I assume in great pain. I could not walk but since this was the early 1950s the first thought was it must be polio.
When I was young, I didn’t know that much of the pain I felt was from having NF. The pain was real, it was not in my head. It wasn’t until I was older that I realized it was linked to neurofibromatosis. I covered myself up all of the time. Looking back, I wish had more confidence in myself when I was a child. I wish I did not care what others thought of me.
January 12, 2018 was probably one the scariest days of my life. I was sitting at work and my heart was beating out of my chest. The pain was unbearable and all I could think was, “This is it…” I was rushed in an ambulance to the hospital with the paramedics on board getting a full work up, tears pouring out of my eyes. All I could think about was my daughter and not being able to go home to her that night.
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.
A neurofibromatosis diagnosis isn’t always what people see when they ask Dr. Google. I never felt that having NF held me back, as my affliction is quite mild and mainly dermatologic. Actually, as a child, I felt somewhat special as I was always told the NF is very rare and anytime I saw a new doctor, they were quite interested. When I was a kid, there wasn’t that much know about NF but now, there is a lot of support available and having NF isn’t necessarily the end of the world. I often say, pointing to my face, that this doesn’t raise money, but it brings comfort to parents who see a strong and successful woman who wasn’t limited by neurofibromatosis.
My diagnosis [of schwannomatosis] did not come until I was 37 years old. My family was a rock, they helped me research the right doctors and treatment options. People say everything happens for a reason, so I accepted the diagnosis and went through over a year of constant MRI's, surgeries and trial chemotherapy treatments.
Growing up I never felt that "this is happening because I have NF." I remember my parents taking me to hospitals and doctors every other waking minute. Although hard to grasp as an adult, for me as a child - it was my reality. I never realized that my life was any different than anyone else's. As an adult, I took little interest in my condition and just powered through life. It really only hit me recently at the age of 39 - I slipped on a patch of ice, causing me to feel numbness from my chest down, which later led to me being paralyzed. I learned that by neglecting myself of the care I needed and resources like the Children’s Tumor Foundation and NYU Langone NF Center, I was not loving and investing in myself enough. I was not paying attention to my life. It's great that I was not limited by NF, but it wasn't smart that I avoided caring for myself. Actually, in a surreal way, my condition has taught me the importance of self-love and this fortunate opportunity we have to live life...sounds cheesy, I know.
At just three months old, I was diagnosed with neurofibromatosis, which lead to more than 30 operations and procedures, one of which left me with a damaged vocal cord and my signature raspy voice. No matter what medical challenges I have faced, or will face, I never allow them to stop my spirit. In fact, they have made me a warrior. I have faced many challenges in my life. While working on stabilizing my health, I dealt with trying to find my place in school and making friends. I could have easily gotten lost along the way, but that was not an option for me.
When I was growing up, I wanted to be an architect. I dreamt of building cities. I would construct cities out of sand in my sandbox, landscape them, cut through roads; these were multi-level dream cities. I had an active fantasy life. I planned out my entire future down to the names of my children.
When I was a kid, I always knew I had neurofibromatosis. I told my friends, but in actuality, I had no idea what having NF meant. To me, all it meant was I had birthmarks on my tummy. Growing up and gaining a few fibromas and having them removed, I still had little information about what was going on with my body.
I’ve known that I have NF for as long as I can remember, having been diagnosed as a very young child at a time when much, much less was known about NF than is known today. Indeed, I was supremely lucky to have been born into a family not only with loving, devoted parents, but in which both my paternal grandparents were physicians. My grandparents jumped on my medical issues from the time I was born, seeking to confirm my NF diagnosis, help my parents, and help me. My parents got involved with what is now the Children’s Tumor Foundation, starting not long after it was founded.
Growing up my dreams were simple: I wanted to be a professional bowler and I wanted to be a sports broadcaster and play-by-play commentator.
I wasn’t diagnosed with NF until my freshman year of high school. Graduating high school, earning an Associate's degree, being recognized by Dutchess Radio as the Club MVP for the 2014-2015 school year, being named New York State Youth Leader of the Year in Bowling, and bowling my first 300 game and completing my first 800 series with a 801, these are some of the happiest moments of my life.
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.
I was diagnosed with NF2 as a sophomore in college. My hearing loss was the most immediate and obvious aspect of some very tough years in my 20s as I dealt with the long recovery of multiple brain, spine, and eye surgeries. On the other hand, NF2 has impacted how I prioritize my time and value relationships because I have a constant reminder that happiness and good health can change in an instant. I try to take time to really appreciate the moments when my wife, kids, and dog are all sitting on the couch laughing, because I know that represents a lot of effort and good fortune despite the many challenges of dealing with NF.
Growing up I hated my café au lait spots. There was one in particular located above my lip that was especially noticeable. I will never forget the day my uncle made a comment that I had dirt/food and needed to wash it off. I guess he just forgot about my birthmark, but I wanted to cry all the same - it doesn't make it easier when it's your own family.
I have being going thru surgeries my whole life; my first at six months old for, all thru high school and later in college. Only now are the operations increasing and getting dicier.
There is good and bad with NF. Because of NF I could not take the chance of having a biological child, but I adopted a baby four months old and a 10 year old child. They both turned out great and I would be at a major loss not to know them.
Craig Warga is a proud father of a boy with NF. He is also a corporate/wedding photographer based out of Brooklyn, NY where he lives with his wife Ema, and their two boys, Aiden and Kai. You can see more of his work at his website www.craigwarga.com.