True Story....Seriously

Not too long ago, I was grocery shopping when a lovely elderly lady asked me a question that honestly startled me. She asked, "Are you that young lady that was on the news, the one her husband threw acid on her face?"  I giggled and told her that no, I was not. I told her that I was born with a genetic disorder called Neurofibromatosis and that I was born with this appearance. The lady turned pink and   said, "Oh, well, you are still beautiful, and we still love you." I once again giggled and told said thank you.

Here's the thing, I find situations like the one with the elderly lady funny; I mean, what else can I do but laugh? I've had people ask me all sorts of questions, seriously! 

Here's a sample of the ones I remember:

    Were you attacked by a dog?

    Were you involved in a terrible car accident?

    Were you born in a third world country, where there is a lack of medical care?

    Was your mom on drugs when she was pregnant with you?

    Did your husband throw acid at you?

    What virus do you have?

    Is it contagious?

Most of the time, people ask what happened, not what were you born with. I find it somewhat bothersome when people assume that I was attacked by a dog or that my birthplace had something to do with my genetic disorder. I think that for some people, it's difficult to wrap their mind around the fact that I was born with a genetic disorder that caused bone abnormalities, among other things. It's easier to believe I was in an accident because if they thought it was a birth defect, then it means that ... well that they could have children that have it or that anyone could have it. 

Like I have said before, I don't mind answering questions; I don't mind explaining what having NF is, how it affects me, or anything in between. I do mind people's ignorance; I care when people come up with stories and assumptions that are just not true. After 25 years, I have learned how to deal with inappropriate questions and ignore the looks people give me, but sometimes I can't resist myself, and I just have to say or do something that will make the person feel extremely uncomfortable. 

I tend to be a lot more forgiving when it comes to kids, and therefore, when little kids stare, I usually stare back and smile. We have a staring contest, and by the end, they are smiling and waving at me. I have learned to distinguish the kids who are just curious and look at me with this innocent face of wonder from rude gawking. For instance, this morning, as I was getting inside my car, two little girls (between 5 and 8) were staring at me ( fixated glance, mouths wide opened), so I smiled and touched my prosthetic eye. They kept looking, but at least I gave them an actual reason to glare at me. 

On another occasion, my mom and I were having lunch at a Colombian restaurant that had just opened. The restaurant was relatively full, and it appeared that there was a party going on on the restaurant's terrace. As my mom and I ate our lunch, a group of girls between the ages of 9 and 12 kept running past our table; each time they did it, more girls would run past our table, staring at me and giggle as they ran by. They walked past our table maybe five times. By the sixth time, one of the older girls decided to stop and just glare at me; she then preceded to ask me a question, “What happened to your eye?" I looked at her and her friends with a  serious face and, in a stern voice, said, "Oh, now you want to know after you all have been rude and laughed. Well, I am not telling you, so go tell the rest of your friends that." Needless to say, I was very irritated and upset.

Now, when it comes to adults, I am not as forgiving because adults should know better, but unfortunately, many adults have no idea how to behave!! Sometimes adults are a lot more inapparent when they are deliberately staring at me to the point that they just have this blank and awkward look on their faces, unlike kids that whisper to one another or their parents. Adults tend to speak out loud to other adults, or in this circumstance, Spanish.  

I was working in retail when I had this experience.  I was working and attending to other customers when t four boisterous  Hispanic ladies came into my store. I acknowledged them and kept working when I overheard them saying in Spanish to one another, "Oh, look at that girl, poor thing she  has a big eye," so I walked right up to them and in Spanish said, " Are you finding everything okay?" The four of them looked at each other and just had blank looks on their faces; they turned around and walked right out the door.

We are all human and always look at someone that does not fit into the "average mold," but just because I look different does not give you the right to stare at me as if I was not human. I notice when people are gawking, and trust me, I will not stay quiet and let you get away with it.

Then and Now

   It has been roughly ten years since I had my last surgery and in my mind it was yesterday. I guess it's one of those things that stay forever fresh in your mind. Maybe it has to do with the fact that I have had over a dozen surgeries. I still see myself laying on the operating table while nurses hook me up to the machines. I close my eyes, and I can still smell the sterilized room, I see half a dozen people in aqua-green scrubs and masks walking around me, I hear my very cute anesthesiologist telling me to count down from 100 to 1 ( FYI I got to 98). Then I remember waking up in recovery and asking for my mom (she is always the first person I ask for after all my surgeries). 

As a child, I thought it was 'normal' for kids to spend so much time at doctors’ offices and having all sorts of tests done. In my mind, my five-year-old mind, all that I thought was normal, I never questioned it because I believed that every other kid had the same experiences that I did. But as I got older, I realized the reality of things; I realized my 'normal' was just that, mine and mine alone. It was with that realization that I went through a denial of sorts, I didn't want my normal because I didn't want kids to make fun of me, I didn't want to be an easy target. I wanted to be like all the other children...I wanted to have friends. Many times I would close my bedroom door and fall asleep crying because I had a bad day at school, or I would pray to God to make me beautiful because I didn't think I was pretty. At one point, I even thought that one day I would wake up and my face would magically be symmetrical, and I would not have NF; I figured it was all a nightmare, but then I would wake-up, and my nightmare would be my reality.

 I was not very nice to myself when I was a little, I constantly put myself down because I believed what my peers in school said, I unknowingly ostracized myself from everyone and everything.

-But then, something in me changed, and I stopped putting myself down, I didn't let the words of others affect me; and if the name calling and the bullying did affect me, I didn't give my tormentors that satisfaction of seeing me shed a single tear. Slowly I blossomed into the person I am today, I learned to let go and not to care of the ignorance of others. I learned to enjoy and welcome the angels that enter my life, and trust me, the friends I do have are the best friends any girl could ask for. They were worth the wait!!!! It took me a few years, but I have finally accepted who I am. I learned to love myself, and unlike seven-year-old Angela, 25-year-old Angela sure thinks she is not just pretty, but BEAUTIFUL!!! 

Life for me has not always been easy, I've had a few stumbles, but I have learned to dust myself off, stand right back up again and walk with my head held high. 

Words do hurt, I am not going to lie, but I choose how those words affect me and decide to let them bounce right off. I decide to live my life for ME, and no one is going to push me down because I am stronger I  am in control, It's my life !!