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How My Mother Helped Me Become an Advocate for Sturge-Weber Syndrome

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First off, I’d like to dedicate this article to my mother who passed from pancreatic cancer this past year. Because in the years I’ve been alive, no one believed I could be mightier than she. She was mighty herself. She had a “no nonsense” way of thinking and taught me never to believe I was a lesser person because of how others perceived me. That is my job, to make them see who I was and never to sell myself short.

She believed all people with Sturge-Weber had a voice of their own, and it was up to those with the condition to be heard. No one should be doing it for us. We should not excuse ourselves from the normal things everyone else in society deals with. We have to face everyday life no matter how scary it is for us, or how judged or mistreated we are by others. In the end, she knew adversity was going to make me a stronger person in the long run. Even though it crushed her to see me come home after being beat up most days after school, or how scared I was in new situations, she knew this was all for the best to shape me into a proud, strong, independent and outspoken human being who knew giving up was never an option.

In 1982 when I was born, Sturge-Weber Syndrome was barely a blip on the radar of medicine. It’s still not very present today due to how rare it is, but I am seeing more doctors with knowledge of it, and we have even finally discovered the cause. But back then, all doctors could say during my mother’s pregnancy was “he has a very healthy vascular system.”

Once I was born, they doubted I’d even make it through grade school. My mother fully disagreed as she held me in her arms. “No, he’s going to be a college graduate, and he’s going to prove you all wrong.”

My mother knew I had an uphill battle ahead of me, but as I grew and grew, I learned what she was teaching me all this time. You can’t give up. You can go slower. You can take the longer, harder road, but you don’t quit when it gets hard. It took me 15 years to graduate with a 4-year degree in college. Yes, 15 years. That’s not a typo. I kept being asked when I was going to graduate by people who graduated in four years, but never remembered what they learned, as well as people who dropped out or never went to college. I probably remember more from my studies than they ever will.

From grade school to college, it was one trial and tribulation after the next. Getting teased, not understanding the work due to my shortcomings, not getting the support I needed, teachers not wanting to deal with me or understand my condition, and of course the many health issues over the years that come with having Sturge-Weber syndrome. There were morning seizures, temporary blindness from glaucoma and having surgeries for various issues, fatigue from thousands of milligrams of meds in your system, and of course the new problems that came with change and age. You can see now why it would take upwards of 15 years. But did I ever drop out of school? No! I took on as much as I could, even though it would only be anywhere from one to three classes at a time.

Beyond college I am still facing trials and tribulations. Because of my appearance, limitations and a rather full personal plate, women still cannot look at me or bear to get to know me on a romantic level. Yes, I’m 34 going on 35 and I’ve never had a date. I was hoping I’d be married by the time Mom passed, but sadly that was not in the cards. I think life has taught me I need to find someone who possesses the same attitude as she did. Someone who believes in me and loves me for who I am, despite what all the critics say. That’s a very hard find even in the normal dating world, but I’m convinced that’s what is in store. My mother told me, “You’re going to find a girl in the same way she’s going to find you. She will have made a lot of past mistakes or had life challenges until she realizes there’s more to a person than a pretty face, and that’s when she will find you. She won’t be perfect, but you will be perfect for each other.”

What do I want for my future? I want to be a writer. I want to share my story of Sturge-Weber. I want to enlighten, educate, and change lives and help pave the way so others with Sturge-Weber have a less complicated life ahead. All lives are complicated; every Sturge-Weber case is different. But even if I can create a smidgen of change, I’ve fulfilled my destiny. I fundraise, I have educated college classes of my condition, and I participate in studies. I do whatever I can to leave that mark of change.

With Mom gone, I am fueled more than ever to be a warrior for this condition because I am tired of the ignorance surrounding rare disease. I am tired of the ignorance people show me, and how they see my life as black and white. To them, I am either completely useless or I am completely fine and have absolutely no issues, that it’s all in my head. These are the voices of people who do not truly understand the disease or the person dealing with it. This is where the change needs to happen. We are all individuals. Just because we deal with similar symptoms does not mean it affects us the same way. It’s time I raise my voice and say, “Don’t tell me who I am. Don’t tell me what I can and cannot do. Let me tell you about me and my relationship with Sturge-Weber.”

To all those with Sturge-Weber, no matter how minimal or severe your condition, we must all be mighty. We must be mighty for ourselves and all of those with our condition. We must create awareness in order to create change for the future. Raise your voice. Be heard, just like my mother taught me.

Love you Mom.

Originally published: September 7, 2016
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