I was called an embarrassment on June 15, 2008. It was by an ex-boyfriend, otherwise known as the @$$hole. He told me that I was an embarrassment because I was tiny and I had scars all over my body. Oh, and the fact that I wasn’t sure if I could have kids to not. He then proceeded to tell me that he wasn’t sure that he wanted to marry me (not that I asked him to).
Want to know why he thought I was an embarrassment? It’s because I have a condition called VACTERL Association. It’s a medical condition that no one knows whether it’s genetic or some type of mutation when the egg was developing. But in reality, why does it matter how I got it? The fact is that I have this condition.
VACTERL is actually an acronym for many different anomalies within the systems of the body. Here’s the break down:
V stands for vertebrae, which are the bones of the spinal column.
A stands for imperforate anus or anal atresia, or an anus that does not open to the outside of the body.
C is added to the acronym to denote cardiac anomalies.
TE stands for tracheoesophageal fistula, which is a persistent connection between the trachea (the windpipe) and the esophagus (the feeding tube).
R stands for renal or kidney anomalies.
L is often added to stand for limb anomalies (radial agenesis).
One is diagnosed with VACTERL if they have three or more of these anomalies. Now, again, it doesn’t matter which ones I have, but I’ll tell you this: I have 4 of the anomalies.
What happens when you have these anomalies? Well I can’t speak for others, but I have had 25 surgeries my whole life. 16 of the surgeries were performed before I turned 11 years old. I have had over 3,000 stitches in me and there are scars everywhere. No matter what I wear, unless it’s long-sleeved turtlenecks and pants, you’ll be able to see my scars. I don’t bother trying to hide them because I know I can’t. I live with it.
Also, my body isn’t straight. My feet turn out (think ballerina type turn out except it’s permanent) and my hips are uneven (one juts out and the other doesn’t. As if my whole body is an S shape). And I had 24 hour nursing for 11 years of my life. That means I had a nurse come to school with me, stay home after school with me, and watched me as I slept. To most it would seem weird and intrusive, but for the first 11 years of my life it was the norm.
It’s not that I never knew that I was different. I mean, you can’t really hide the stuff I have and there’s no point of even trying to deny I’m like others. But, for the most part growing up, I was okay with it. I accepted that I couldn’t change who I was so I didn’t even try. Most people accepted me for me and the ones who thought I was weird…well they didn’t have the nerve to say anything.
I spent most of my childhood in hospitals. The too white walls and thin, stiff mattress was a second home to me. I was used to the constant beeping of the heart monitor recording my heart activity. I can’t tell you how many times I was poked and prodded, pricked with thin metal needles in hopes of getting my vein on the first time. When I was younger, the pricks were joined with wails of pain and fear. As I got older, I stopped worrying so much.
At any point in time during my hospital stay I could be checked out by doctors or medical students. Sometimes I felt like a specimen in a lab, waiting to find out what was wrong with me. Every time I thought things were going well, something would happen. Up until last year it was the same thing. Whenever I think that my life is getting back to normal, that I can move on and start living more, BAM something else happens. Because of that, I’ve learned to take my life day to day.
I was always trying to deal with who I was and what I went through. I accepted it because I had to and I tried to make the best of it. But the first time I truly felt ashamed of who I was and what I went through was when I was called an embarrassment. I didn’t think words could feel like knives but as they pierced me I felt myself deflate. My self-esteem wasn’t the best to begin with but this…this completely demolished it. I didn’t understand how someone who claimed to love me could say such things.
Five years later and the words still hurt. My self esteem is trickling back up but it’s nothing like it was. Now I can’t talk to someone without thinking about what they think of me. I can’t tell people what I went through without worrying they would think that I was some type of freak. I’m always guarded, especially around new people. When people mention that they never noticed the scars until I told them, I don’t believe them. My thing is, the scars are everywhere, how could they not notice?
People tell me that I’m a miracle and that I’m a survivor. They tell me that I fought well and I look great. But what they don’t realize is that it’s still a day to day struggle. I worry, every day, about everything I do. It’s never an easy street for me. I wish people would understand me if I told them that but all they think of is that I’m a fighter and survivor. They are so happy that I made it this far, they don’t realize the baggage I have to carry around.
For a while I hated myself. I hated having this condition and everything that went along with it. But lately I’ve been trying to go back to accepting it. I can’t change who I am or what I’ve been though. I know that I am a fighter and I am a survivor. But every day I still have to fight and I still have to survive. This isn’t over just because I may be “well” right now. Anything can happen and send me right back to the doctor or hospital. Something as simple as a sprained ankle can be a big change for me.
It’s all in the life of someone with VACTERL Association.