I peel away the wrapping paper to reveal the colorful cardboard box holding my birthday present, a mega box of green apple Jolly Ranchers. I unwrap the slippery plastic wrapper for the hundredth time this week and pop the sticky sweet goodness into my mouth. You're probably wondering who thought giving a fourteen year old a box of candy as a present is a good idea, but to me it's more than just candy, it's my sanity. I know it sounds weird, but when your genetics betray you and don't let your organs do their job, like digestion, hard candy becomes a pretty big part of your life.
Picture yourself sitting in a room full of tables and chairs with a hundred other people surrounding you. Everyone is told to sit, so you do. Waiters bring out silver platters covered in tall reflective covers, concealing the origin of an incredible smell. They put the plates down and an array of delicious looking food is revealed. You look down the line and see everyone is excited about what was put in front of them, it is everyone's favorite meal. This has to be some sort of heavenly dream for everyone else, but for you it’s some sort of nightmare. Imagine sitting in front of food you so desperately want each and every day, and you just can’t have it.
You are surrounded by a world who advertises this “incredible experience.” Food is ingrained in our society, and for a good reason too, if it wasn’t, all you food consuming mammals wouldn’t be here today. But what people don’t realize is that eating is a part of every aspect of our culture. Think about it, you go to a party and there’s food, go out with friends and there’s food, you go to the movies and there’s food, go to a carnival and there’s food, you get together for Christmas or just about any other holiday and there’s food. And for Pete’s sake there’s Thanksgiving, a holiday that is supposed to make us think about what we are thankful for and appreciate all that we have, but instead most people just stuff their faces with food and stare aimlessly at the TV watching football.
And I mean have you watched TV lately? Because I have and commercial after commercial is about food. All you can eat this and finger licking good that. “No one can resist our new blah blah blah!” I have stopped watching regular TV for the most part for exactly this reason, but for the sake of research I watched prime time TV for an entire hour and about 60% of commercials that hour were for a restaurant or somehow related to food. Driving down the highway, BOOM, a million food billboards, signs for food at the next exit, there is no escaping the vivid pictures of the juicy, greasy food I can not eat, it is everywhere. And the last thing I want to hear on my Pandora during the ride to the hospital is a commercial that tells me to drop everything and drive to the nearest fast food place to try some burger or fries I can’t even smell without gagging let alone eat. Food is truly unavoidable.
I wasn't joking about Pandora. |
Really McDonalds? Really? |
I'm glad to know that at exit 59 there is a 100% chance of nausea and a 50% chance of vomit. |
If it was really crafted for my craving it would come with a working digestive tract instead of a toy. |
How am I supposed to navigate through a world that revolves around something I can’t have and not lose my mind? Well, I lost my mind years ago and there’s no way i’m getting that back, but I still hang on to any piece of sanity I can find and go with it. In this whirlwind I happened to find my true lifesaver, jolly ranchers. You can throw me any piece of hard candy or gum and there’s a two hundred percent chance i’ll consider and most likely consume said deliciousness wrapped in plastic, but to me there is nothing better than the taste of a good old jolly rancher.
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My bag of candy is the only way I can survive sitting at meals. At parties, I have my pack of ice breakers, at Thanksgiving, I couldn't get by without my pie flavored gum and apple dum dums, and at birthdays I have my trusty birthday cake gum. Sounds great, right? Candy for breakfast, lunch, and dinner, every kid's dream. But what about when I start to get tired of the sweet flavors of jolly ranchers, and you can no longer ignore the more than slight chemically taste of the artificial gum? Most people can just put down the candy and go eat a cheeseburger, but I can't.
This is where my magic green apple jolly rancher can't help. I don't really sit down with my family for meals, and I don't go out with friends if I know the night will revolve around food. I make it work for the important parties and events for holidays and birthdays, but the rest I have to learn to let go. I mean I have better things I could be doing than eating; with my feeding tubes and central line I can eat, drink, talk, and walk all at the same time. I could be learning Mandarin, or training to be an undercover CIA spy, or heck finding out the key to the universe while you're busy only eating food.
Through it all, my green apple jolly ranchers really do pull me through. I wouldn't be able to manage without them. if it weren't for them, I would have spent many birthdays and school events wishing I could taste something without them. Even though they can only help so much, my candy means I can be more comfortable around people that are eating. A green apple jolly rancher is so much more than another sugary snack; it really truly is my sanity.
I feel this!! In college I have had several professors feed the class. For a while it bothered me. My teeny class of 5 would eat bagels during English, we had a Halloween party with food, my History professor took us to restaurants several times and my Mosaic II professor bought enough pizza to feed at least 30 people this week, as well as snacks every day we had class throughout the semester. All great gestures, except when your digestive tract is nonfunctional. While it made me feel strange saying no to these gestures, I realized it made me stand out. I am listening to the lectures because it distracts from the food, as long as it's not too odorous. I have been able to connect with some amazing people because of my faulty guts ... yesterday I was having a lot of difficulty with dysautonomia the heat has been horrendous, however Doug, my professor, was acutely aware that I was unwell because of the relationship that we have formed due to not being able to eat. You get to talk and share your story to a certain degree. I wasn't always comfortable with that conversation, but it has helped me more than not. I think. It's a learning process, most definitely.
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