Adventure Is Out There, And I'm Determined To Find It

I shift my feet as I inject the last syringe of medication into my bag of TPN. It’s ten o’clock at night, the end of an incredible day with my family; we drove halfway across the state to see one of my best friends, explored the campground where they keep their camper, and drained blue cotton candy out of my G-Tube. Now here I am, five hours away from home, setting up TPN on the bed of an RV. I’m nauseous from the faint smell of burgers and hot dogs, and  a teeny-tiny fluff ball of a dog is sleeping on top of my feet. How the heck did I get myself into this situation?

Earlier today we packed the car full of our bags that we needed to take on our annual adventure. Every year since 2009- for the exception of last year when the family road trip was my family driving out to see me on Easter in a hospital across the state- we pack up and head in a general direction. My family doesn’t believe in knowing exactly where we’re going to sleep or where we will go next. So we wing it. I've gone on road trips since I've had medical issues. For example, we traveled to Niagara Falls where I toured in my shiny, new wheelchair. But never to this extent. This year is the first year we’re road-tripping since I've needed extra baggage like TPN, tube feeds, and a million other things that make leaving home an endeavor in and of itself.

2009 trip ft. my shiny wheelchair

As I stare at the fully jammed car it hits me the amount of supplies it takes to keep me alive for just three nights. The contents of my supplies are as follows:

1 bag of assorted candy (duh)

1 wheelchair

1 sharps container

1 biohazard bag

1 huge backpack full of medical supplies that don’t need to be kept sterile-

     2 knee braces

     1 wrist brace

     3 ace bandages

     1 box of KT tape

     6 tube pads

     1 roll of PressNSeal

1 gigantic cardboard box containing-

     4 sets of IV tubing

     4 sterile syringes

     18 needles for injecting into TPN

     4 formula bags

     3 sterile caps

     8 saline syringes

     6 heparin syringes

     2 Sorbaview dressings

     1 dressing change kit

     1 cap change kit

     10 needles for my injections

      3 enteral extensions

      4 batteries

      1 Cadd pump charger

      1 Infinity enteral charger

      1 backup enteral pump and charger

      4 enteral syringes

      1 box of alcohol wipes

      4 Farell bags

      1 container of Clorox wipes

      8 boxes of formula

      1 roll of paper towels

1 huge tub of my medications

and last, but certainly not least,

1 red cooler that holds my life-source:

3 bags of TPN.

The cooler also holds 7 syringes of medications, and two vials of my injections.

All these supplies for three nights.

I now also realize that the car is made up of 95% medical supplies, and that I only have one bag that isn’t medical, and it’s full of clothes. Because of all this extra baggage we need to stay in a hotel that has a refrigerator, ice machine, table, adequate air conditioning  and the usual two beds and sofa bed for our needs. This requirements make our spontaneous adventure of a trip a little more tricky than the average family trip.

So why leave the house to drive somewhere I've never been, to try to find a hotel that fits my needs, to spend hours in a car that makes me feel sick, to go through all of this just to go on a road trip?

One word: adventure.

I don’t want to spend my days at home, pent up inside because leaving the house is hard to do.

I refuse to let my health hold me back from going out into the world and having a great, big adventure.

I want to feel the excitement of pulling out of the driveway on the beginning of a trip, knowing the best is yet to come.

I want to take chances, even if it means I may end up tired and grumpy and in a not ideal situation.

I want to feel the wind on my face as we cruise down the highway, with a feeling of uncertainty and adventure looming in the air, since I still don’t know quite where I’m headed.

I want to stop on the side of the highway to take pictures of the valley below.

I want to see new things, meet new people, visit new places.

I want to explore the world.

The Pennsylvania Grand Canyon The Pennsylvania Grand Canyon

Getting to experience the world beyond the walls of my house and the hospital is worth the struggle of lugging my extra baggage around. The only thing that will ever hold me back from going on a trip would be my mindset. As long as I have my determination, my family, a cooler, all of my seemingly endless medical supplies, my dad’s excellent packing skills, and a little planning, anything is possible.

Selfies on the side of the highway

More highway shenanigans

"This is my cart now"

The site of the dam that caused the Johnstown flood

Walking into a great little Mennonite store that ended up having some great chips I could lick

I Can Indeed See You Staring At Me: A Primer of Staring

As my two friends and I stroll through the stores in the mall on a hot Summer day, one of them asks, "What if I stared at other people like there was something wrong with them?" You may need some more information in this situation, the three of us don't exactly look like a "normal" group of teenagers. My one friend is pushing me in my wheelchair that has my backpack which holds my tube feedings, IV nutrition, and drain bag. I have braces on my knees and a mask on my face. You could say I stand out a bit. You would think people would use their common sense and not look at me like i'm some robot-alien out of a sci-fi movie, but most people ignore their common sense and stare. The amount of people who stare at me on a daily basis used to bother me, and it still does sometimes, but now I ignore it, stare right back at them, or identify and organize them into categories for my entertainment. Now these stares I get aren't just the occasional "I think i’m being discreet and innocent glancing stare", it's often the "blatantly obvious, straight on, what is that??? stare." There are so many different types of stares used in different places and in different situations, so lets take a look at a few most common ones.

#1. The “I think i’m being discreet and innocent, glancing stare.”

Ah, one of the classics, you are all guilty of it. This stare occurs when an individual, let’s refer to them as A, spots another individual, B, who, for various reasons, stands out from society’s “normal” appearance. Person A, who tries to fulfil their curiosity in a way they believe is appropriate by slightly rotating their head by a few degrees at a time when they think person B is not looking, then moves their head slowly back to it’s original position when thought to be socially acceptable. This process is often repeated multiple times until person B has left person A’s range on vision. Here’s a little secret from somebody who is often person B in this situation: I can see you staring at me. When there are twenty people in a room all trying to perform the “I think i’m being discreet and innocent glancing stare,” chances are, more than one person will be looking at me at one time.

#2. The “blatantly obvious, straight on, what is that??? stare.”

The most common misconception about this stare is that it is mostly done by children. This stare is actually most commonly executed by grown men and women, who I am sure have acquired the proper social skills to know not to do this, but do it anyway. Stare #2 usually happens when person A swiftly detects diversity on their radar and quickly decides to ignore their instinct to be polite and perform this stare. Person A then rotates head, and sometimes even entire body, and fixes their point of origin on person B. Person A may continue the stare anywhere from 30 seconds to minutes. This stare can be the most irritating, and most amusing, for me anyway, stare of them all. I find it so ridiculous that people stare like this that I can’t help but want to go hand them a brochure titled, “Manners for the Common Idiot”, and strut away like Beyonce.

#3. The "oh my gosh I feel so bad for you stare."

Sighhhhhhhhhhh. Person A in this situation is often a teenage girl, couples with young children, or an elderly person, but usually a teenage girl. Accompanied by a look of pity, this stare happens when person A is overcome with emotion after seeing someone they believe needs to be pitied. Person A then proceeds to stare, maybe tilt their head slightly, and continue to feel bad for me until something new and maybe shiny catches their eye. Just thinking about this stare makes me want to puke.

          #4. The "what is that, whats wrong with them?!!??!?!? stare."

With a mix of curiosity and horror, person A in this situation stares without trying to hide their emotions. This stare is a more obvious one and may end with person A whispering to the people around them, causing a ripple effect of many types of stares. I really don't appreciate this stare, but I do enjoy watching people trying to figure out what is wrong with me, it is quite amusing.I get this stare the most when I'm at the beach and people are trying to figure out what the tubes coming out of me are, it's great.

   Now here's the deal, I know that human instinct drives us to new discoveries, and for many people passing me in Walmart or wherever I may be, I am their new discovery of the day. Staring is but a product of the curiosity found in discovery, but so is asking. I am not every person who has ever been gifted with the gaze of a thousand eyeballs, so I can't speak for everyone. But at least for me, if you find such deep-seated curiosity in my appearance that it feeds the raging fire of discovery in your soul, feel free to ask. I will often enjoy answering a few quick questions about the way I look and feel empowered in sharing knowledge with others, and if I don't feel like engaging, I'll shoot back with a short response that you can Google later. I would much rather that more people in this world were informed about the conditions that make me, and many others, look different than the typical person than have people stare and make assumptions.

The Joy of a Jolly Rancher

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.

A disturbing, but accurate representation of America's obsession with food.

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.

omnomnomnomnom

       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.

Review of Patricia McCormick's Sold

Following a young girl through the horrors of human trafficking, Patricia McCormick tells the heart wrenching story of an estimated 1.2 billion children  each year. McCormick grew up in the suburbs of Central Pennsylvania where she graduated from Rosemont College. After graduating she pursued her writing career by getting her graduate degree. McCormick now finds herself writing about difficult and important topics that aren’t in the mainstream media. She says, “I want to bring attention to issues people might not otherwise know about and I want to change attitudes”

To research her novel Sold, McCormick traveled to Nepal and interviewed many locals including young girls who were rescued from the brothels and the men that went undercover as customers to get information to girls in slavery. Her research provided an understanding not obtainable from websites and books, and allowed her to truly understand the horrors of human trafficking.

The book begins in a small, poverty ridden village in the countryside of Nepal. Lakshmi, a girl around thirteen years old, lives with her loving mother and her stepfather who spends his time gambling at the tea shop instead of working. Her family struggles to make ends meet, and as the seasons go by her mother has a baby, worsening their financial troubles. Lakshmi proposes the idea that she could work in the city as a maid because her best friend was believed to be working there. After the arrangements had finished, Lakshmi began her journey to the big city, escorted by her new "auntie", the first of many people to assist in the selling of Lakshmi to a prostitution house. Still wide eyed and hopeful, and believing she would be a maid, Lakshmi asked her auntie "If the roofs are really made of gold."

After walking miles and miles, taking her first bus trips, and having encounters with wonders she had never before seen in her country village, Lakshmi is taken to a young man. This man gained Lakshmi's trust by giving her sweets and lollipops and buying her food when she was hungry on the long train ride, just to hand her off to Mumtaz, the owner of the Happiness House, a prostitution house that buys or tricks young women into a life of sexual slavery. The girls are stripped of their dignity and all that they are, and are forced, even drugged if they do not cooperate, into sleeping with men. Lakshmi desperately tries to hold on to who she was in her village, smelling the clothes she used to wear, and at first refusing to participate.

While at the Happiness House, Lakshmi meets many young women in similar situations as her. One of the women, Pushpa, has young children with her, including a young boy Lakshmi befriends, who she calls "David Beckham boy." When this boy catches Lakshmi looking through his school books, he offers her lessons. Even after Pushpa and her kids are kicked out when Pushpa is too sick to work, David Beckham boy's kindness does not end when he gives Lakshmi a brand new pencil, and Lakshmi gives him a soccer ball made from her old clothes.

One day a man walks into her room and Lakshmi prepared herself, but the man does not approach her. Instead he told her he is an American and asked her her name and age and if is she was forced to be here. Lakshmi was paralyzed with fear and remained silent, The man gave her a business card and tells Lakshmi he can take her to a “clean place” where she would be safe. The man leaves, and Lakshmi, still shocked that the man payed and did not use her services, slipped the card under her bed and tried to forget about the event. She has heard that the Americans are bad and will hurt you, but knew this man was different.

A few weeks later, another American comes and shook her hand, just like the first. He showed her pictures of the “clean place.” He sensed her trepidation and showed her more pictures of girls there that are happy and laughing together. The man tells her Mumtaz can not force her to be here, and that he would be back for her during the raid, and that she would have to show herself when they arrived.  Lakshmi is nervous about him and does not know if his intentions are right, but she smiles and knows he is good.

Very early one morning Lakshmi hears the commotion of police officers fighting with Mumtaz, and she knew it was time to go with the Americans. As the other girls tried to push her into hiding, Lakshmi breaks free and ran down the stairs in front of Mumtaz, who is being held back by officers. Lakshmi calmly stated her name and her age, and she knew she was safe.

Being rescued is not how most stories of human trafficking end. Twenty to thirty million people are enslaved around the globe, the majority are women, and about half are children. People are torn from their homes, or traded and sold by family members that are either tricked into believing they are going to work for an honest living, or are willingly selling their family member into slavery. After being taken, 46% are taken into sexual slavery, 28% are domestic labor slaves, and the rest are miscellaneous slaves forced into various odd jobs at places such as restaurants or construction. A very interesting talk on one woman's personal experience with human trafficking and her journalism career that is focused on bringing awareness of human trafficking to the modern world.

By writing in the point of view of a young girl actively going through the traumatic experience or sexual slavery, McCormick allows the reader to put themselves in Lakshmi’s shoes and understand what each and every day feels like for millions of women around the world. McCormick could have easily written Sold in the point of view of the American police officer saving the day, but she chose to allow herself to go through the process of feeling as millions of other young women do everyday.

McCormick chose to write Sold in short scenes, almost as if it was Lakshmi’s journal, which makes the complicated and emotional process of reading about the reality of sexual slavery easier to digest. This book is a quick read that I read in a few hours one day in the comfort of my hammock, and managed to change the way I think about everyday life, and has brought the topic of human trafficking to the front of my brain. Patricia McCormick has written an incredible book on a topic not often talked about or understood and is worlds away from many of our everyday lives, yet is still relatable for millions of people around the world. The awareness of human trafficking will continue this fall the movie Sold will be released in the US.

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.