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.