My name is John, and I have Neurofibromatosis – Type 1.
At an early age my mother knew there was something different about me.
My family doctor knew I had NF but did not say anything because “nothing could be done about it”. Another doctor formally diagnosed me in 1987. Neurofibromatosis was a scary and unfamiliar word at the time and my mother was devastated.
School can be an unpleasant when you are different. I remember classmates calling me names such as “shit stain” and “lumpy neck”. I hated changing clothes in gym class because of my café-au-lait spots and remember going home in tears because of the teasing.
My mother treated me like a normal kid. I was allowed to go outside to play, and grounded when I did something wrong.
In high school the teasing subsided, except for one student who called me “bee stings” all year. I no longer cried, but it still hurt. In grade 11 we moved to the suburbs, a fresh start. I made new friends and started to fit in. All was well, or so I thought.
In May 1996, I started noticing pain when I walked. I lost my balance and fell unexpectedly. My friend laughed but knew something might be wrong. Within a month my health had gotten worse and I could barely walk to school. I got an urgent referral to a neurologist whom upon examination, scribbled a note and told me to go straight to the emergency room.
MRI scans at the hospital discovered multiple tumours growing along my spinal cord. One of which was causing a compression between C1 and C2 vertebrae. I was admitted for surgery to remove the tumour. During my two-week stay in the hospital, the friend who “laughed” at my folly visited me everyday. We still remain close friends. I spent the next six months in therapy learning to walk and do everyday tasks again.
I started university in the fall of 1997. Still weak and walking slowly, It was overwhelming stepping onto campus for the first time. However, with hard work, support from the office for students with disabilities, and my mother, I was able to succeed. Four years later I graduated with new friendships, experiences, and a degree.
With fate and a bit of luck, I found a job one month after graduation and have been working ever since. My employer has been accommodating with my disability. NF has never been an issue for me on the job.
I’m not angry about my NF and accept it as a part of my life. Some days are good, some days are bad, but to me that is just life. I still get strange looks from people, which I now ignore.
A few years ago while in the change room at the gym, a man asked me “What does the doctor say about you?” I understood the true intention of his question, so I told him I was not contagious.
In 2009 I needed a vacation and decided I wanted to join a tour group to see the pyramids in Egypt. I was nervous about traveling alone and meeting strangers. Could I manage? What will they think of my NF? In the end, everyone was friendly and treated me with respect. One person asked me respectfully about my condition. I was happy to explain it was Neurofibromatosis and am glad I made the trip.
Last year, complications from NF appeared again. This time, it was tumours along my lower spine between L4 & L5 vertebrae. Another round of surgery to remove tumors, 3 weeks in the hospital, and 6 months in therapy. Funny, I’m almost getting used to this now.
There are a lot of difficulties people with NF face. Whether it is prejudice, depression, or complications resulting from NF. Some go through life without any complications. Others minor, and regrettably, some will experience extreme hardship.
Is very easy to worry about NF and the uncertainty that comes with it. Don’t spend too much time worrying about you or your family member’s NF. This will end up causing unneeded stress. Instead of focusing on what the complications from NF might be, Focus on everything you can be. There is a world out there, having NF should not keep you from it.
Choose to have fun, laugh, smile, pick up a new hobby, spend time with loved ones, enjoy and live life to the fullest. Do this and you’ll be too busy to worry about NF.