Life is good—my NF Story
I’m a 43 male living in the USA. I was diagnosed as a toddler, if not earlier. NF1 runs in my family. My grandfather had it. My dad and 2 brothers have it. Several aunts and cousins too. One of my brothers in particular has had severe medical complications. My family once was on the news highlighting this condition. But this is about me. I have the cafe au lait spots and nuerfibromas.
Growing up was rough and I was always behind both physically and academically, though I seemed to catch up in high school. I have the ADHD and am probably on the spectrum.
The bumps have increased with age. I don’t like standing in front of the mirror or taking off my shirt and seeing the nuerfibromas. I worry about the future and how many more will grow and where.
I try to keep perspective and not worry about tomorrow. I think that is the key…trying not to dwell on it and create unnecessary misery.
I graduated college with a bachelors degree in religion and philosophy. I’m a smart cerebral dude. Just had to find my way.
I have a successful career in technology…going on 15 years in the IT field.
I have a wife who loves me dearly. I can’t imagine my life without her. She’s a teacher. We own a home.
I have unexplained male infertility. Yep, 100% infertile. So that at least solves not passing NF on. Cause I wouldn’t wish it on others, especially my own.
I go to the gym regularly for weight training and cardio. This helps tremendously both physically and mentally.
I have scoliosis and my muscles are TIGHT. I have some chronic tension. I receive regular massage therapy, which makes a difference.
Social relationships are hard, but I have some incredible friends who enrich my life.
I love hiking and the outdoors. I enjoy gardening and watching my trees grow and flowers bloom.
I absolutely love music and go to concerts, though I’m not musical at all. Country singer Eric Church is my guy and his song “Some of It” is my life song.
I have a spazzy black lab who adores me. He has a couple bumps too.
I hate NF, what it can do to people, including me. But Life is GOOD.
Community is good. I hope this can be encouraging to others. Life can be and is good. Find passions and take care of yourselves.
-Jason