Monday, November 1, 2010

After The Mask-Thriving with Neurofibromatosis!

It's tradition, Halloween is meant to scare. Neighborhoods are decked out in spider webs, carved pumpkins with freaky faces, skeletons, and witches. We watch scary movies and go to haunted houses just to get that extra thrill.

For some, though, Halloween is seemingly lived year round. Living with a condition that makes you less than "normal" is something that many people experience. Having a highly visible disability can make the holiday feel odd and unsettling. I often joke that I should just Trick or Treat naked, painted orange, and say I'm Muno. I laugh as I say it, even to my husband, who laughs with me. But in truth, that's just a mask as well - deep down, when I really look at it, it hurts.

I am friends with many men and women who are much more severely affected by Neurofibromatosis than I am. While we all suffer from the same disorder, their Plexifom Neurofibromas create visible deformities, such as those often identified with the Elephant Man - to the point that our disorder is often linked with Proteus, which is the actual Elephant Man's Disease. Unlike the common neurofibromas, which stay round and contained, regardless of how numerous they become, plexiforms have no such boundaries. They can twist and disfigure a person's body and face with ferocity.

While the rest of the world put away their masks last night, my friends cannot escape their deformities.

Masks, though, go beyond our looks. Masks come in the form of attitudes. This is one of the reasons Halloween is so popular - its a day where 'normal' people trade in their emotional masks for physical masks that won't be judged. For one day a year, the world can be whoever they wish to be, with no judgement.

But the real Halloween is what the average person lives year round, as the world hides behind false motives, their fake fronts, and a false sense of normalcy as they walk through life pretending its better than it is, so they don't have to face reality.

Those in the NF community who experience the harshest of NF's effects are faced with their reality daily, and we have many in our ranks who face the world head on, regardless of the world's difficulty doing the same in return. The nastiest masks are never worn on the outside, but on the inside, keeping us both from discovering who we really are as well as letting others see the same.

Many have suggested that Thriving is just a mask - meant to cover the reality of the pain. That isn't Thriving however. Thriving is seeing the masks that we wear, and learning to throw them out in favor of reality, accepting it, and moving forward anyway.

Thrive on!


  1. I love your site. I am a new follower and I will have to go check out other people you follow with NF too. Thanks for the comment on the blog frog!!!

    PS. I want to put some of that NF stuff on my blog, where did you find that at?

  2. I create and sell the products -- the bracelets and tshirts. (well cafepress creates the shirt...i just created the logo)

  3. I'm a new follower and I LOVE YOUR SITE. ..