In February 2006, Los Angeles Times staff writer Thomas Curwen and Ana Rodarte began e-mailing each another on a regular basis. Here is a sampling of their correspondence.
Feb. 3, 2006
Curwen: I wonder if I could ask you to try to put into words what being different has meant to you as you've grown up.
Ana: I suppose its the fact that people are used to not seeing people that are different, such as my condition or any other, my point of view is that maybe they should take the time to be in said persons shoes. Perhaps I don't have it as bad as I think I do, I'm sure someone out there has it far worse than I do, but since society is used to labeling people as one way and there are many out there that don't fit the "norm" then people feel the need to judge.
The only thing that frustrates me is people that feel they need to laugh pretty much in front of me, as if i don't see it, I would say children frustrate me more, but truthfully i have seen adults act far worse than children, but i don't really say much, I shrug it off, there is no need to lower myself and defend myself.
Feb. 13, 2006
Curwen: Do you want to have children someday? Are you afraid?
Ana: Yeah but its best to forget about wanting kids, i dont have a choice really and i dont want to raise kids that arent mine.
Feb. 16, 2006
Curwen: Do you have a memory of what your face looked like before the tumors grew? How did you feel growing up and seeing your face change?
Ana: I have always had the tumors so i dont know what id look like without them, which is why i really dont get my hopes up till i can see some improvement of some sort.
I grew up looking different than the other kids thats as much as i remember, and thinking it would be cool to look like them, but i know i wont ever have that. i grew up going to hospitals thats as much of the help i was going to get, and i decided to stop going because i saw it getting worse more than it was getting better, adjusting to things was a bit difficult but i learned to not care much about it.
Sept. 19, 2006
Curwen: If you were to write your own story, what would the first five sentences be?
Ana: I dont know. never thought of that. maybe something like: Somewhere between the crayons and the glue, the swings, and the milk boxes, i came to the realization, i was different from the other kids in my class.
Sept. 28, 2006
Ana: where are you! i have stuff to share! Dont make me run to Los Angeles to tell you!
Curwen: I'm here. I'm waiting. I'm eager to know more.....
Ana: We went to the La Jolla cove and we went inside a cave called Sunny Jim Cave. Man that cave was creepy, i mean the closer you got to the water, the more it trembled. I started to get scared and all. Because of my fear of big bodies of water, but wow, to be that close to the waves.
Oct. 2, 2006
Curwen: Why do you suppose Hometown Buffet didn't hire you?
Ana: you know why i didnt get hired and i know why.... the answer is obvious
Curwen: Do you think a job is an important part of your future? Do you plan to live with family forever?
Ana: Perhaps you dont understand how hard it is for me to get rejected for a job i want, from the outside things seem easy, but would you feel the same way if you were in my shoes? Probably not...
May 6, 2007
Curwen: So what movies are you watching?
Ana: well i love the hills have eyes, its a really good movie, i cant wait till i get it on video. and lord of the rings, well ive seen that movie way too many times, to the point that well they are all scratched up. I really like thelma and louise, i love geena davis, shes really talented. And well alpha dog, justin timberlake is in that one, i really like his music alot, and he is an ok actor.
Aug. 22, 2007
Curwen: So have you been busy getting ready for the quinceanera?
Ana: well my dress i bought last month, shoes i bought early this month, now i just need to get my nails done, and figure out what to do with my hair, my parents stuff is ready and everything is set, all we can hope for is nothing bad happens from here till saturday.
Sept. 27, 2007
Curwen: Do you ever shake your fist at God?
Ana: i probably did when i was little, i dont do it now, what's the point? its not going to solve all my problems, there are some that have it far worse than i do, when it comes to the condition. Im pretty much used to it, and i live my life as normal as anyone else, why should i have any different lifestyle? i think about it and see those that are born and cant walk, do i think i have it better? As mean as it sounds, yes, yet others with other conditions probably think the same when they see me. People are always going to complain about something, whether they are healthy or not.
You just have to learn to play the cards god gives you, i suppose.
Just like when those people that were supposed to be on that flight on 9/11, some missed it, and some well.. you know. It really is about fate, maybe its a test, so when ya go to heaven, you get rewarded for what you dealt with while alive, who knows, now you got me talkin crazy.
everyone has a different set of things that are important, things vary i suppose. im not sure. im not that wise yet, i think as the years go by, you pick up more wisdom. i have 27 years on me almost, and life doesnt get any easier as you get older. i dont know.
Oct. 3, 2007
Curwen: I know that you probably don't understand why I feel this, but your story has something to do with courage.
Ana: I dont think its courage really, its part of my life, and i dont see it otherwise, ive been in and out of hospitals since i was a kid so, this really isnt any differemt, aside from the fact these doctors do know what they are doing and in Loma Linda, i dont think, technology was as advanced as it is now. Which is what discouraged me, but Dr. Batra and the rest are doing a great job, its what keeps me going back, that and hes just as cute as a button!
Oct. 17, 2007
Curwen: What do you want from life
Ana: i dont know what i want from life yet.
Dec. 14, 2007
Curwen: I spent an interesting morning yesterday over at Children's Hospital LA. I didn't know this before, but they have a clinic for NF1 patients. I never knew so many kids were affected. So I'm curious to know: Do you have any sense when you first learned that you have NF?
Ana: i think it was the doctors who told me and i dont know what age i was.
Dec. 21, 2007
Ana: oooh its almost christmas!
Curwen: Don't you love this time of year?
Ana: i like it,... there is a different vibe around this time of year, people are usually happier.
Curwen: What do you want for Christmas??
Ana: mp3 player. a new cellphone. moovies! i love my moovies. hmm clothes,... thats about it.
Jan 4, 2008
Ana: just writing to tell you my [citizenship] ceremony is on feb 1st at 8 am in pomona.
Curwen: This is fantastic news. I bet your parents are proud.
Feb. 6, 2008
Ana: tell me more about this NF center. I was thinking of asking you to take me one of these days. But wasnt sure if i wanted cameras to follow me, as i feel this is one of those moments where i need privacy type of situation.
April 28, 2008
Curwen: I wonder if you've thought about that again . . . thought about that NF clinic.
Ana: Yea i would love to go there, but i wonder if i myself can handle seeing kids with the same disorder, you know those that have it more advanced, i dont wanna go there and start crying when i see these kids. I dont think i have it as bad as i used too, but I dont know i really want to go there. Maybe talk to them or something and see how their life was like.
Nov. 5, 2008
Curwen: Did you get out to vote?
Ana: yes I voted, its what i have waited for, all year, the day was a bit odd tho, so i knew something good would come out of it. the year itself has been pretty interesting, and i dont think it was just my life that was full of surprises, i think this year was probably different for everyone.
the day like i said tho, as a rainy day, from the looks of it on tv, it was raining in most areas of the united states, that made it feel, at least for me like something good was going to happen, im glad, people went beyond the color of his skin, and realized that this guy, could actually make a difference, and id love to meet Michelle obama some day, if you ever meet her, you must get me her autograph, she is an amazing woman, just as charismatic as her husband.
Curwen: Do you think that what you have accomplished this year, such as obtaining American citizenship, is related to the surgeries?
Ana: i would have had what i have now regardless of the surgeries.
Nov. 7, 2008
Curwen: You've risked yourself by going into these surgeries. You've suffered pain, loss of teeth, general discomfort, etc. And yet you keep returning. I know you like Batra's work and the results of these surgeries. Is it that simple?
Ana: well what did i have to lose? other than sit here and watch it get worse, as it did through the years after high school. Yes i like his work, maybe its just as simple as the way he and the other doctors have talked to me, i dont know why im doing this. And its possible that i will never know why i am doing this, my life hasnt changed, i still cant get a job.