I’m Rachel and I just turned 23 and have RDEB, and I am glad I do because it has made me who I am. I am independent and very strong willed. I love when someone says to me you have EB you can’t do that (cook, drive, travel, have a job) but OH boy don’t tell me I CAN’T. If you do I will grab you a chair and you can sit back and relax, my fingers may be fussed and may take me longer but, watch me do what you said I can’t!!
I am stubborn and hate help I find a way to do what I need to do. EB yes can be challenging but it also adds a challenge to life in general, which I enjoy. I strive on proving me and that I CAN and WILL do what I want in life EB or not. I don’t really care if I have friends, family, or doctors that are not on my side and want to tell me I can’t. I am going to do what makes me happy if that means getting tattoos, piercings, 4-wheeling or any other thing that is said is not “good” for me. Something else that makes me happy is being a computer nerd. I am in fact graduating in May of this year for interactive media animation and web design. When I tell people that they look at me and say “how do you do that with no fingers?” I do it because it’s what I want to do and what I like to do. But, I get where they are coming from, its fascinating to others, even my family will stop and look to see how I am accomplishing things.
But, my dream is something not many think I can accomplish. That dream is to move to LA after graduation. I have family that says I can’t take care of myself, but even though I live at home now I have to do everything myself. I was always told when I was younger if I want something “I have two feet get up get it/do it.” If they don’t want to support my choice that’s fine to me because this is what I have wanted for years. Again, if this is what is going to make me happy then I will make it happen. Even if I’m living in a box, my box will be in LA.
When I was younger my goals used to be don’t scratch, don’t wrap for week. I realized I needed to make life goals FOR ME! EB or not it’s about what does Rachel want. In the end EB and my life are not on separate Photoshop layers, and I can’t just turn the visibility for EB off. So I am going to select both layers hit CMD G, group my layers together. Save my file and publish it because I’m PROUD that the overall file equals ME!!!