Wednesday, October 26, 2016

Faces of Spina Bifida: Meet Misty


I'm Misty. I'm 33 years old, and was born with Spina Bifida. My parents didn't know about my birth defect before I was born, but the doctor told them he was sorry, and that he could have "done something about this," had he known. My dad thought he meant, "do something," as in, "fix it." Dad found out quickly that he had misunderstood. The doctor wasn't talking about fixing me. He was talking about getting rid of the problem...getting rid of me. Mom was still in another hospital, recovering from giving birth, but Dad was given a big, long list of reasons why I should be peacefully allowed to "go." Stuff like paralysis was mentioned. Mental retardation. A long list of "she'll never's." Mostly, it was a quality of life issue. There would be no "quality" to my life. My life wasn't worth living.

Here's the thing. Quality of life can't be measured in textbook statistics. There are no numbers for it. There are lots of stats if you look at just my SB. Lesion level-L5. Number of surgeries-15. Hospital admissions-hundreds (thousands?). ER visits- Only God has that number, but there's a number. Medical procedures-51,834,839,926. Probably. So, there are stats. And there's probably not much "quality" to be found in the numbers. But let's look at what I've done between the numbers...I learned to walk, talk, and eat, all things that were on the big list of "she'll never's." I went to school and played with friends. I had sleepovers, and birthday parties, and did all the things kids do. I had a first boyfriend. I broke up with that boyfriend. There was a trail of other boys too. I went to high school. I played flute and percussion in the band. I smoked pot once, and tried to hide the smell with a cough drop. It worked. Sorry, Mom. Dad, just skim that last part. I learned to drive, and speed, and got tickets. I graduated and went to college. I got married. I've traveled. I've danced. I've laughed. I've cried. I've lived. And I've known that every day I've been given is "extra," because my parents took a chance. You can't measure any of this stuff with numbers. Quality isn't measured in numbers. It's measured in moments. I've had some good ones.

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