What Are Those For?

"May I ask what those are for?", they say pointing to my feeding tube and central line tubes. Alright, no big deal, I have no problem with talking about this. I have no problem explaining my disease and what I need to keep me alive. "Um... I can't eat... so... this is how I get nutrition," and this wonderfully awkward sentence sometimes ends with some inaudible mumbling that doesn't completely answer their question and then the conversation goes on normally. I have no problem explaining my condition, but why is it when someone pops the question, "What are those for?" in the middle of a conversation, I just can't seem to give a short and informative answer? I can beautifully explain it if of bring it up or in a PowerPoint, in a blog post or email, but I can't quite do it on the spot. So to everyone who has not been given an answer, here is what I want you to know.

1. I have a genetic connective tissue disease called Ehlers Danlos Syndrome.

EDS affects the collagen (basically the glue that holds all of your organs, joints, and blood vessels together) so my whole body is affected. From dislocating joints on a daily basis to organ dysfunction, I have a whole array of ever changing symptoms. My genes are to blame for this rare disorder and is highly misunderstood by doctors.

2. Because of EDS, my GI tract doesn’t work as it should.

EDS causes Dysautonomia, which is dysfunction of the autonomic nervous system. Dysautonomia causes dysmotility, the muscles in my GI tract don’t push food along. EDS also causes an abnormal buildup of collagen around my intestines, which affects how my GI tract works.

3.This means I can’t “eat.”

Non- functioning GI tract=no food for me. I’m constantly nauseous and bloated because everything just sits in my stomach, which puts eating and drinking out of the question. So I get my nutrition by way of feeding tubes that go into my stomach and intestines, which I use to feed, get meds, and drain, and a central line, which is a tube in my chest that goes into a vein next to my heart, to give me fluids, vitamins, and nutrition.

4. I have a lot of pain and fatigue, and strange symptoms that can change by the minute.

One minute I may be laughing and walking around, and the next I may be on the floor with vision disturbances and trouble breathing. I can’t do much about most of these symptoms, and when they happen, I have to ride it out. Asking if I need anything means a lot, and even if I don’t, knowing someone is there for me makes all the difference.

5. EDS has no cure.

My faulty collagen and I will live out our days together here on earth, and kind of like an old married couple, we get a little tired of each other. So your good intended “Get well soon”, or “Feel better”, may feel like a punch in the stomach. Acceptance is a big part of having a chronic illness, which means saying, “I could never do that”, or “Wow, I would be so depressed if I had to live like that”, is not a compliment of my strength, it’s a sugarcoated version of, “Hey great job, your life is way worse than mine, so let me think about how bad you have it so I can feel bad for you and make myself feel better!”

6. This doesn't mean you have to treat me differently!

Just because I am a little different than you, doesn’t mean I’m not a person too. And please, don’t hesitate to ask me anything, keeping things open and light is always better that staring and wondering. I like to hang out on the weekends, I like to go out with friends, if you ask and I am having a good day, chances are i’ll say yes. Accepting each others differences is part of life, sometimes it may be a matter of which sports team a friend likes, or maybe it could be that your friend has an incurable disease. Either way, a person's a person, no matter their differences.

Moving Forward When You Don't Know Where You're Headed

When you decide to travel in your everyday life you almost always have a starting point, a route and a destination. You pack for your trip. Shorts and bathing suits for Florida, and boots tents and jeans for a hiking trip. But what if you were given a starting point, a suggested route, but no destination? Just an endless amount of possibilities. You may need shorts or jeans, or both. You might end up needing a raincoat with gloves and a bicycle. You won't know until you start your travels. Sounds adventurous, or pointless, or exciting, it depends on who you're talking to.

 Now imagine your trip was your life.

You were born and that is your starting point. You were fed the idea that your life would go as planned: School, sports, friends and extra curriculars. Then off to college and then to get a job. Get married and have kids. Retire and grow old with your spouse with maybe a few bumps in the road. The end. So your parents and teachers and family give you the tools you'll need for your life. They teach you to share, how to organize, how to speak read write do algebra and how to find the units of energy in an electrified object if it's 2:30 am on a Saturday in October. They give you the things you think you need, and most of the time it's a success. They do the best they can. But what happens if you have your luggage packed, all of your tools in hand, and you get thrown a wild card and suddenly you're in a place they never taught you about. Okay, fine. I'll just find a way to use my skills in a different environment. There, creativity looks great on college applications! Hahaha. Ya, sure. Let me know how that goes.

Suddenly there is no order. You have no plan, never knowing what the next day will take you. There is no way to plan a year in advance, not even a month in advance. And now your tools are foreign objects, rarely used, but admired and longed to be useful. At first it's scary, but eventually you learn to stand your ground, how to land on your own two feet. You find yourself going with the flow. Expecting one thing, but being completely okay when it goes another. You learn to move forward, even when you don't know where you're headed. You find the beauty in life. All of the wonderful things become all more amazing. The glory outshines the pain and the colors are all the more vivid. You find joy in the illuminating colors in the sunset, and comfort in simple conversations with friends. Everything that used to be pretty cool is suddenly magical. Now you see that life isn't about the destination, it's about the road that takes you there. You now don't mind the crazy challenge of life, because it gives you a really awesome adventure.