What is NF2?

In a few words, it’s really shitty disease. Especially if you are diagnosed and begin experiencing issues when are young… before you have started or able to really experience life.

I found out with my parents when I was 8

Another way I have described it to a few that have asked, it’s not something I like talking about and never had many people to tell anyway… is it’s like slow cancer or accelerated aging. You get more and more disabled as life progresses. Some faster than others.

A longer explanation that (but not as long as in Wikipedia) is that it’s a rare genetic disease (aka you get born with it) that causes tumors to grow on the skin and around nerves… so they can pretty much pop up anywhere at any time.

My subconscious interpretation I guess was better do the things I want while I still can. And for the most part that worked out pretty well for me.

I would say I was on the slower side until this past year when several tumors went into overdrive and became cancerous. Had brain surgery to remove one but then another one around it grew to replace it. Had another surgery shortly after to remove that but yet another has already taken it’s place…

So now I’m 32 and eligible for Death with Dignity… which is usually used by people with terminal cancer… In other words, enough doctors that see me have finally deemed that doing another surgery or some form of chemotherapy would cause me more harm than good.

About this Publication

There were a lot of obstacles my family and I had to find ways around. Many things that I could not do or have but the biggest issue though for me, until now, was after I became completely deaf about 10 years ago.

Some people have it a lot worse, even writing a story like this may take them considerably more effort.

Or maybe they are like me with something they want to say but not enough to fill their own book.

So hopefully this Publication can be an outlet for them as well those that care for them to share what it’s like living with this disease and bring attention to things that could use some changing.