acceptance · Cleft Lip and Palate · Writing

Perspective and Paths From the Late ’90s

I took another deep dive into my old files. Files that were on floppy disks that I moved to cloud storage thanks to an\ computer that I found with a disk drive a few years ago. I find something new every time I open up these document files with multiples pieces that sit layer upon layer on top of one another. I have papers I wrote my Freshman year of college, news articles, poetry, class notes, and more dating from between 1998-2003. I wish I had done the same thing with files on a more slightly more recent computer that I owned from 2004-2008. 
I wrote this piece sometime between 1998-2000. I thought this was particularly pertinent after spending the summer writing a book proposal for a memoir. In fact, I may just use it, or expand it. Until then, enjoy this short read. 
When you are young and innocent, you just do not know enough to not be curious. You look around at the world to try and figure it out. You try to find your place and rank in it. You search for reasons and meaning. One place my curiosity and sense-making was often triggered was in the lobby of Boston Children’s Hospital. My brother still remarks, “You just don’t realize how lucky you are,” when he reflects about coming along with my mother and I to appointments at Children’s. I agree with my brother on his excellent point. Here is a narration of me walking through the lobby in Boston Children’s Hospital.
My eyes wide, I walk from the entrance of the hospital through the lobby to the Feagan elevators. More can be learned about humanity in the two minutes it takes you to walk from the sliding glass doors of the entrance to the sliding silver doors of the Feagan elevators than can be learned in any school’s classroom.
I look around carefully because I do not want to be caught. The kids I go to school with are not so careful. They are stupid enough to allow my eyes to slowly meet theirs, lock and for me to look away: the victor. Gotcha! Smile, you’re on Candid Camera. I know what it feels like to be the specimen. I think what the kids at school would think of these children I see now. Mouthes opened, children of the suburbs would be shocked and pawing at the air for this mother’s leg. I am that scared too, but its different because I can empathize with the pain they may be feeling. It saddens me to see children in wheelchairs, pale white skin, with little hair on their head, hooked up to IV tubes that snarl and entwine up an IV pole ending in plastic bags of differing shapes filled with colored fluids. Painful, to see children walking with crutches trying to fight, one step in front of another, the body that betrays them.
A scratching sensation gnaws at my stomach, as I walk through the rest of lobby. The strange feeling in my stomach is the sadness, mixed with fear. Sad because the children are so young yet so strong beyond they years. I feel that way about myself sometimes. Fear because I do not know what to expect at this appointment nor when I will be having my next surgery. I look at the walls and the overall appearance of the lobby. I look around at the painted glass windows. Its cookie monster or something like that. It does not matter what it is, the contrast is too much. The pain of the children’s blank stares mixed with the carnival-like quality of the decorating. I feel that nawing in my gut, again. I pass the dollhouses that I enjoy looking at. People have donated them to bring a little cheer to the patient’s days. I think this is sweet and I remark about how much I like them myself. There are toys strewn around behind them with children smiling and playing on the carpeted floor. It’s such a nice scene. Those children appear as if they are at home or in a day-care center. But reality sets in again, as a doctor in blue scrubs whizzes by with an air of authority.
Weeks later, I am in the car with my mother. I told her about being teased and stared at in school. I was hurting pretty badly and hoped my mother could help me deal with these feelings I was having. I knew what she was going to say, but this time around she gave it a nice twist.  She told me the usual, “Be strong.” “Don’t let them get to you.” type stuff. Then, she threw this one into the mix, “Think of it like a grab bag, Kara. If you threw in your problems and reached back in you would want what you have back.”
I never thought about it that way. I thought back to the lobby, the wheelchairs and the children in pain. It really all began to make sense. I would want what I have back.
“Yeah, Mom, I wouldn’t want some of the other things,” I said, thinking about the pale faces, smiling through the pain.
I would want what I know back, not because it is easier, but rather because I know what it is and what it means to walk my path.

 

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