Spina Bifida Awareness, My Story

June is Spina Bifida awareness month, and thus a time to learn about this birth defect and appreciate those living with the condition, and their families.

A quick definition of what Spina Bifida is, a neural tube defect where the spinal column does not form completely in the first month of pregnancy.  Spina Bifida is different for everyone born with this condition. From paralysis to walking with the aid of crutches, to learning disabilities to none, Spina Bifida can affect a person in different, yet significant ways. For myself I am mobile, but do rely on a fore-arm crutch to get around in winter where there is ice and/ or snow to combat.Yet I have friends with Spina Bifida who are unable to walk, but are otherwise intelligent, oft-times funny, and insightful people.

Growing up I have come across various reactions to my Spina Bifida. Everything from pity, scorn, to acceptance and indifference of my handicap. This has helped shape who I am today. I have learned throughout my life, to no longer run and hide from the hurtful words, and stares. Instead I try every day to take every opportunity that comes before me, to teach others about Spina Bifida in hopes to rectify intolerance due to a lack of knowledge and understanding. As a person with a disability, I do not wish for pity and I am firm in wanting equal treatment from others. Even being reprimanded for wrong doing on my part. Spina Bifida does not give me a free ride in the world. I make mistakes like everyone else, I learn from them like everyone else.

I have overcome bullying, and continue my ongoing battle with depression. Spina Bifida does not define who I am. I define Spina Bifida.  It has taken me many years, many hard lessons to realize this. Only I am truly in control of my destiny. I take medication daily, to help keep up my health and I am genuine in my embarrassment when I have accidents, or experience seizures in public. (As a result of my first surgery on my back, I am incontinent, and do not have proper sensation to use the bathroom when I need to).

Spina Bifida is not fun, I would not wish my life on anyone. Yet I have learned so much in my life, from simply having this condition. This one little part of me, that makes me, well, more unique. I am stronger person because of all I have learned in my life. I may never know what caused my Spina Bifida, and honestly I do not care. I can not change what is. Frankly, I would never want to.

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