My Story

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Welcome to my site/blog. I created this site because I wanted a place from which to tell my story. I suffer from a rare neurological disorder known as NF2. 

Basically, due to a genetic mutation in one of my chromosomes, my body grows benign tumors, mostly on the brain and spinal cord.

These tumors will cause NF2 patients to experience numerous neurological issues including deafness, vision impairment, balance issues, trouble swallowing, impaired facial function, speech difficulties and many others. 

Personally, I've been very lucky when it comes to NF2 and the damage it has caused me. I am deaf, since 2008, I have less than optimal balance, a winged shoulder due to a spinal tumor, small cataracts in both eyes, and some other minor issues. It's kinda of messed up though that my situation is considered "lucky" but it's the truth, I have many friends with NF2, who have had to endure much worse circumstances.. 

I built this site for numerous reasons. For one thing, I love to write, it's one of my greatest passions in life, and I've always wanted to host a blog. I also wanted a place, where I could tell my story, to try and give people a better understanding about what it's like to live with a rare disease. 

I don't wanna sound like one of those people who are overly positive to the point that it's unhealthy. I don't see NF2 as a positive thing, it's a fucking bastard, I hate it, and it can go to hell. That being said I have used NF2 as an opportunity to find out what I'm truly made of mentally. When I lost my hearing in 2008, it broke me, I was in a very dark place. I'm proud to say, I've come a long way since then, but I'm not near where I want to be, and that's ok. I have made peace with the fact that I am never going to be satisfied. There will always be more goals to chase and I like that because it gives me a reason to keep fighting. It's what makes life worth living, LFG!