During the podcast, the topic of "touching" came up. I have to say that, THIS was the one topic I wish I would have opened up more with.I mean sure, everyone loves to be touched or hugged at some point in their lives. But with me it's opens up a very fearful road.
I could probably talk on a podcast for an hour, all by myself, about what it's like, emotionally, living with a disorder that transforms your body, into a tumor-ridden "freak". I hate what Neurofibromatosis has done to me. I hate what's in store for my children.
The very first time I was intimate with someone, NF was not a problem....the tumors were there, but I was the only one who could see them. I was very good at hiding...and very clever about not being seen intimately, when lights were on.
I used to love to have my face caressed...but now have tumors growing making me pull away anytime someone even attempts to touch me there. My neck, shoulders and back used to love being massaged, but now, tumors fill those areas too.
In my mind I am thinking, "How could ANYONE, possibly want to touch me?" I can barely stand it when I catch a glimpse of my back and tummy in the mirror, getting out of the shower....How could anyone be okay with this!?
I AM Thriving in Spirit...But I still have a LONG way to go, to be THRIVING in body. I have a hard time dealing, when I see new tumors forming on my body. I often wonder what life will be like 10-20-30 years from now.
All I can do however, is continue working on myself. Continue to THRIVE in my day....In my week....
Actions follow Attitude, and I am determined to fight through my insecurities, and one day maybe beat them. But for now, I am fighting the fight...just like you.
I'm sort of the same way, but for a different reason. I guess I was a really difficult baby (like when I told you about that weird bone deformity?), so I think I never got the idea that being cuddled and stuff was meant for comfort, but I never liked it, to the point where my mom would tell me when I had a boyfriend she wouldn't have to worry about keeping us apart. Anyway, I think a lot of that is from being poked and prodded at doctor's appointments growing up. I still remember the shame I felt when I was being looked at ALL over when I was a kid. So now I still have a lot of trouble with that kind of stuff from time to time. I don't like being touched when I'm upset, I bristle at the idea of being held when I'm sad. But I haven't had tumors to hide. I'm trying now and getting better at it with my boyfriend, but for some reason, I still have a little issues with it with my family, which makes me feel bad.
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