So you want to know who Melissa or Mel is huh? Let me start off by saying that there’s nothing to out of the ordinary or extraordinary to who I am (maybe I’m just downplaying a bit). This one’s always hard to start with because who is Melissa? Who am I? Who’s this person writing a blog? And whoever she is, will others want to really know? Inquiring minds want to know these answers. Hold on to your seats!!!
I’m a born and bred Southern California chick. Yes, I’m from the west coast where all the greats originated from…..Tupac, NWA, Dr. Dre. It’s all about “California Love.” My ethnicity’s Salvadorean…..no it’s not part of Mexico; it’s a small country in Central America. My parents are from there, so I’m a Latina all the way. Or am I an American-Latina? Lets just say I’m both because it’s just too complicated to get into all the specifics and I’m not one for history. I’m the oldest. I have a brother who’s completely healthy and we’re 7 years apart. I was the quiet one and he was the terrible one when he arrived. Typical boy.
Let me knock out 2 misconceptions that many have: I wasn’t born with a disability and I wasn’t in a car accident. It’s always been a mystery why people always assume these two when there are so many reasons that someone’s disabled. All the reasons aren’t by choice. Ok ok I’m digressing here and no I’m not avoiding the question. My mom always tells me that I wasn’t walking when babies should be walking, but being the young mom that she was, she didn’t give it much attention. Before the age of 2, I got really sick with my first cold (pneumonia) and I started having them frequently. They did biopsies and figured out what was wrong with me…I had Muscular Dystrophy. In more technical terms, I have Nemaline Myopathy (good luck in finding out what it really is) and it’s mostly common in females. There’s so many different types of MD, over 90 to be exact, but that’s the one I have and I consider myself lucky but not so lucky. I’m not going to get worse and I’m not going to get better. The sucky part is that it affected my diaphragm, which is the muscle that makes the lungs function, that I needed to have a tracheostomy (a hole in your neck because that’s how many refer it to when they ask me), which then turned into me needing a ventilator at night time to breathe because if I didn’t I’d die. Scary huh? Yeah to a kid at that age those things are scary.
Here comes an added bonus to having MD; I also had Scoliosis. Yup, my spine was the shape of an “S.” My head leaned to the right while my torso leaned to the left and hips to the right. A total “S” which goes perfect with the first letter of my last name. This wasn’t a good thing at all because my spine was pressing up against my lungs and heart which was causing the pneumonias and my heart to enlarge. Sounds like I’m a rare kind doesn’t it? So to fix the problem I had to have spine surgery and my mom tried to hold off as long as she could only because I’d stop growing. But ultimately with getting sick so much, I had 4 pneumonias in one year, they decided to give me the surgery. Lets talk about where I got to go before having this massive surgery. When a child has a big surgery with an uncertain outcome, the big guys call the Make A Wish Foundation and grants a child a wish. Guess what mines was? DISNEY WORLD!!! Stayed there for a week and it was so much fun. Got treated like royalty. Ok so back to the surgery. The surgery lasted 11 hours. The longest day of my parents lives for sure. They inserted 2 rods from my neck to the top of my butt. And let me tell you that they almost lost me on that surgery table. I don’t know exact details since that was 25 years ago and sometimes certain things of your life are foggy, but what I can tell you is that even though it stopped me from growing, the best thing it did was stop me from having so many pneumonias. So I guess having steel in you isn’t so bad.
Did I have a normal childhood? Nope, not really. While kids played in the playground, did the monkey bars, and took naps, I was either in the hospital or wasn’t able to do these things. Since I got sick with pneumonias the hospital was pretty much my second home. I wasn’t allowed to take naps or even doze off because I needed my ventilator to breathe when I slept and at that time, I only used my vent during the night. As I got more and more pneumonias, my lungs just got weaker to the point where I had to use the vent 24/7 and then eventually my muscles got too weak that I had to use a wheelchair. This doesn’t mean that I didn’t go to school or anything because I still went to school like a regular kid, but up until the 5th grade I attended a school where it was divided with special needs and regular kids and that elementary school had an actual school nurse that knew what to do with students who had vents and trachs. I was able to transition from that school to a school near my house that wasn’t divided. The new school had an assembly to introduce this new kid coming to their “normal” school because I was the first student that was disabled. My classmates treated me no different, but knew that I’d require help and adjustments. School was school…..I mean, none of us like going to school and I wasn’t any different in that area and I hated getting up early for school. I was never a morning person when I was younger. What kid is right?!
All throughout school I never had a nurse or someone in the medical field that was with me. I had teacher’s aide or a regular person that was hired just to help me and be there in case of an emergency, but honestly they didn’t know what to do if something really went wrong because they just knew the basics: how to suction or hand me my suction machine, how to plug up the vent to electricity and in case the vent failed, how to use the manual ambu bag. I had to grow up fast and learn how to take of myself and do certain things. I had no choice because my parents had to work and I didn’t qualify for services in California. I’d get home from school and stay by myself and I did the same in college. That’s why now I’m so independent and I know what to do in case of an emergency. That’s why it was so hard for me to get used to having actual licensed nurses coming into my home when I moved to North Carolina. Now I’m used to them and I’m even more independent.
You may ask if my disability defines me. I’m here to tell you that it doesn’t. My disability made me strong and made me push through life. My parents taught me that if it works, use it and they treated me like a normal child. And I thank them for that, but like I’m 35 now and you can let go of the chord, ok? I’m definitely more than my disability and I have accomplished a lot. This blog is long enough so I won’t tell you what I’ve done since I graduated high school and what I’m doing now. I’ll keep you in the dark for now, but I hope that this has given you a bit of an understanding of half of who I am with my disability. Remember that not all who are disabled are “disabled” and we all have a story to our life and continue to live our story in our own way. We just want to be included and understood.
To find out more about Muscular Dystrophy, you can visit www.mda.org