Having a disabled person in your family is extremely hard. It's even harder when that disabled person is your big sister.
Living with the uncertainty of her future is the most frightening thing. Whenever people stare, you can't help but feel annoyed at them even though you know they are just curious. Sometimes, you can't go to a restaurant or a store because they aren't accessible. When people who don't need the handicapped parking spots take them, you want to call them out in the middle of the parking lot for being so insensitive.
There are approximately 166,000 people in the United States living with the congenital defect spina bifida, according to the Spina Bifida Association. My sister is one of them. From a young age, I realized that she wasn't the same as everyone else – not because she needed a wheelchair, but because she never complained about her disability.
My sister is 26 years old. Throughout her life, she has had countless surgeries and has been in and out of hospitals. I would daydream about us jump-roping together or riding bikes with our brother around the neighborhood. I would pray, "Please, God, can you make Jessica walk?" I guess I didn't really understand the severity of her defect and the health issues that came with it.
There are so many sensations that she will never experience, like wiggling her toes in the sand or the aching pain from walking all day in high heels. Some days, I try to rationalize why life couldn't have been easier for her, but then I realize that in her whole life, she has never asked the question, "Why me?"
I think what makes my sister so remarkable is her kindness and infectious cheerful attitude, despite the fact the she has already endured so much and still has more to face, like dialysis and/or a kidney transplant. Her problems are real.
My "problems" seem absurd in comparison. I grumble about schoolwork, my job, or how I missed a day or two at the gym. Jessica, on the other hand, is unable to attend college, can't have a full-time job, and has never been able to run. It really makes me feel like a jerk for complaining, and it makes me wonder, "What if it was me who had spina bifida?"
There is something to be said about a person who can implicitly teach you to put things into perspective. While I wish things were different for her every single day, I'm glad that I have her in my life to ground me. My sister has never been and will never be defined by her wheelchair. Instead, she is defined by her heart.
Email: nataliel@buffalo.edu
