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 and 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.
Having NF did lead to a lot of anxiety as a child. Interestingly, it was not necessarily about a pending doctor’s visit (like getting a shot), it was more about schoolwork or something small that I would make huge. I wish I knew then that you never realize how strong you can be and the unpredictability of where life leads you. The one critical component is to have hope and faith that you will be better off, as long as you don’t limit yourself to your circumstances.
I have made NF part of my story in the work that I do. Sharing my story of living with NF has really helped me identify with people who have struggles in life. We all have pains in our life, but sharing them makes them lighter to carry. Hopefully, I can shoulder some of the struggles people have and vice versa.
There is a massive community of professionals that want to support you. Do not isolate yourself -you don’t have to do anything alone. Likewise, I am looking forward to marrying the love of my life! She is a true gift and I am blessed to be able to share life with her.
Alwyn Dias, 40 years old, lives with neurofibromatosis type 1 (NF1). He is a Human Resources Professional and Executive Coach and lives in Morristown, NJ.
