Saturday, October 29, 2011

Spina Bifida Awareness: Meet Magan!

Today we hear from a wonderful lady named, Magan!

I would love to say that this is happy and uplifting, but it isn't. Sorry. :+) But it does have a happy ending!

This is my story...

I was born in 1973. Back then, they were just beginning to have the technology to be able to save the lives of babies with Spina Bifida/hydrocephalus and give them half a chance of a "normal" life. My father had been in Vietnam when I was conceived and a correlation between Agent Orange (which my father had been exposed to during his time in the Navy, as well as asbestos) and Spina Bifida was later discovered. I was well into my twenties by that point and had had a fairly difficult life. The doctors told my mom not to expect anything from me--that my life wouldn't amount to anything productive or useful. My mom, being a stubborn, feisty, independent woman, raised me to be a fighter, but all who know me said that I came out of the womb swinging! There's even a joke in my family that says when my doctor spanked me, I turned around and smacked him back! Haha!

I never had a relationship with my father, who later told me, to my face, that I wasn't wanted as part of his life. His loss, I think. :+) But then, after my parents divorce, my mom and I moved to California, where a whole new world opened up for me. We spent a year in Santa Barbara, where I began to learn independence, then we moved to Northern California, where I was abused by someone who was supposed to 'love' me. Thankfully (?), the majority of that year, I spent in Shriner's Hospital in San Francisco, having rods placed in my back and my legs straightened. It was a good year! Haha. I learned independence quickly and learned how to rely on myself, and not others. After my release, we moved back north, until we moved back to Santa Barbara, where we would live until I was sixteen.

School was less than stellar. I was never a good student. I was bright, but unmotivated. I wanted to be anywhere but in school. And I was wildly creative, and imaginative. I am a writer by nature, so I was always getting in trouble for 'having my head in the clouds,' Haha! I had a lot of good people who surrounded my mom and I, but who didn't completely understand me. I know they often felt frustrated for my mom, because I was such a difficult and stubborn kid. When I was eleven, I descended into five years of hell, known as my teenage years. I was angry, I was stubborn, I was difficult and I didn't know how to harness it (yet). I was also being sexually abused and didn't know how to tell anyone, including my psychoanalyst. I told a story to a few people at school and it was me trying to tell them that I had been abused, but nobody knew to take it that way and I got into a lot of trouble, because no one could read between the lines of what I was saying. Nobody.

I had my first severe shunt failure when I was twelve. I almost died. Yeah, that was fun! Haha! But my mom sought out a great doctor for me, who saved my life and gave me a chance to see things through a different lens. But I was still angry and would be for many years to come. Anger was always my lifeblood, until I discovered love.

I also did not believe that God existed. I had had a dream when I was nine that was the worst nightmare I ever had. I still remember it to this day: God was killed by venomous spiders and snakes, leaving me alone in the world. Even though I was raised by a good Christian mom and surrounded by a good Christian family, I was still alone, I felt. During this time, I met a woman who started out as my social facilitator, who quickly became one of the best friends and advocates I'd ever have. Her name is Rena and I owe a lot of who I am today, to her. She is a psychologist and began my journey into becoming myself. She accepted and loved me on 'my' terms. She also introduced me into competitive sports. I was able to harness a lot of my pain and anger through competitive wheelchair sports. I was so good at competition, especially racing, that I made it all the way to the California Wheelchair Games. I came in second, due to a technical difficulty.

When I was sixteen, my mom and I moved back to Michigan. I was in tenth grade by that time and I didn't want to move back. But, when you're sixteen, not emancipated and disabled, you have few choices. So I moved back and settled into an even angrier me. I quickly gained a reputation as "someone you don't want to mess with," that still sticks, even though I am not nearly as angry as I was then. And my relationship with my father came full circle also, as I tried desperately to have a relationship with him, only to be treated as unwanted. Finally, I stopped caring.

When I was in my early twenties, I met a man named Gary, who changed me. He was the cousin of a friend and we were close. He taught me that I was beautiful, inside and out, and taught me how to let go of that anger, in so many ways. He taught me that I was beautiful, even if I didn't feel it. And I never did, until I met my husband, in 1999. My husband and I knew at our first meeting that it was destiny and nine years later, we were married. The reason? I needed to know that when my body failed me, he wasn't going to. And he hasn't failed me. He's my best friend and the joke was on me, because, with my incontinent issues, I didn't think he was going to be able to stick around. The joke? My husband was a direct care worker, who worked with a man with a colostomy bag! Haha!

That was twelve years ago. I would love to say that aging with Spina Bifida has been easy, but it hasn't. I've had more brain surgeries over the past ten years than I have had in my entire life. Frustrating, but comes with the territory. But I am no longer angry about my life and no longer want to be 'like everyone else.' I am proud of who I am and I've come a long, long way. I like my life and I like the tough cookie I've become. I am now a published writer, with two short stories under my belt. I own my own crochet company, The Mad Crocheter, and I am a psychology student, well on my way towards obtaining my Master's degree. Without all the complications, I would never be where I am today.
Magan Rodriguez
Thank you for sharing your story with us, Magan!!