LAUGHING AT MY NIGHTMARE

As you may or may not know, Jesse, Jon, Pat, and I went to the USA Women’s soccer game vs China in Philly (technically Chester but close enough) on Sunday. The idea for this trip came about after you guys helped me get Alex Morgan’s attention on Twitter. Unfortunately, I never heard back from her after the initial tweet she sent me saying she wanted LAMN, Inc. wristbands for the whole team. Refusing to give up, I bought 4 tickets for the game and we started brainstorming plans to get her the wristbands at the game.

These plans included: Jesse dressing up as a janitor so he could push me into the locker room disguised as a garbage bag, parachuting into the stadium during the game and hand delivering the wristbands to Alex, and our last plan involved me driving onto the field naked, covered only by a pile of wristbands. After we came to terms with reality we decided to have Sarah make us a beautiful sign that would get Alex’s attention. We also planned on screaming at her a lot… in a nice way. Surely she would come over afterwards and take the wristbands.

The hour and a half drive to Philly was spent discussing how to properly handle the potential gravity of the situation if Alex did indeed come over to our section.

When we arrived at the stadium and made our way to our seats, a very friendly usher told us that all the handicapped seats had been moved to the top level of the stadium for this game. Our faces must’ve revealed the crushing disbelief we all suddenly felt because the usher asked if we thought he was joking. At first, I thought he was. The handicap seats at PPL Park are literally front row, about 10 feet from the field. Those seats were a very crucial part in our plan to get Alex’s attention.

The usher was not joking, so we begrudgingly made our way to the top of the stadium.

This is where we were sitting:

With a half hour until game time we sat up in Northern Bumblefuck and debated the next course of action. Suddenly Jesse stood up, announced he had a plan, and left us. A few minutes later we saw him talking to another usher down below where we were originally supposed to be sitting. After that he disappeared from our eyesight for about 20 minutes. Just as we were coming to terms with our Alex plan being a failure, Jesse came back to our seats, literally dancing, saying that we should never doubt him. He waved a piece of paper in my face and announced that he was successful. I’m not going to tell you all the details because there are people out there who might frown upon them, but I will tell you that Jesse did something so brilliant we were praising him for the rest of the night.

This is where we ended up watching the game from:

It was amazing. The US destroyed China 4-1. Go USA!

After the game, when the team stood in the middle of the field to thank the fans, there was a solid 30 seconds when Alex was looking directly at our sign and us screaming and waving at her. The jury is still out among the four of us about whether or not we saw her laugh at us, but that is beside the point. Alex did not come over to us, and I honestly don’t blame her. She probably did not see any of my follow-up tweets, which would explain why I never heard back from her and she did not come talk to us. It was a little depressing, but at the same time I was probably dumb to think everything could have worked out so perfectly.

HOWEVER, and I capitalized it because it’s very important, Megan Rapinoe, who is another well-known player on the team, started to make her way from the center of the field directly towards the four of us. We panicked like a bunch of pre-teens at a Justin Bieber concert, but gathered ourselves when she came up to us. She held out a marker and asked if we wanted anything autographed, which was not at all what we were expecting, so we momentarily became the four most awkward people in the stadium. Jon recovered first and held up the bag of wristbands we had prepared. He explained the whole Alex Morgan Twitter situation and asked if she would mind giving the bag to Alex. Megan graciously accepted and we bombarded her with thank you’s. Pat held out his flip-flop for her to sign. Megan ended up putting the bag down the back of her shorts, which only made the situation 1000 times better.

In the bag was a note that I had addressed to Alex. It explained the nonprofit and thanked her again for accepting the wristbands. I also gave her my cell phone number and e-mail, because you’re not going to NOT give Alex Morgan your number when given the opportunity.

I still haven’t heard anything from the team, but all in all, I believe that Sunday night was a very entertaining success.

My insurance company will cover a new wheelchair every six years.  I’m guessing they didn’t just pull that number out of thin air—although it wouldn’t surprise me—but I’m sure there was some research that found a wheelchair’s life expectancy to be about six years. Imagine if that was your job: find out how much damage this wheelchair can take before it falls to pieces. I want that job. But I digress…

I’ve been using the wheelchair I currently have since eighth grade, approximately 6-7 years. For the past few weeks, my parents, as well as my physical therapist, have been nudging me to start the process of getting a new one. Believe it or not, I really don’t like changing wheelchairs. I pretty much hate it. But when I tell people this, it usually takes them some time to understand where I’m coming from. I say the word “new” but they hear the word “better.” However, new is not always better when it comes to a seating arrangement that is such a crucial aspect of my everyday life.

I’m not a bratty 7-year-old though, I realize my chair is getting old and starting to break down more often, and I understand how extraordinarily fucked I’d be if my chair broke permanently before I had a new one. So this past Monday night, we met with someone from the wheelchair company to start the arduous process of getting me a new whip.

There are many reasons that I am so against changing wheelchairs. I’ve come to understand that many of the reasons are difficult to comprehend for the average able-bodied person, and that is the biggest problem; the able-bodied people who assist in the wheelchair selection and customization process have trouble understanding the intricacies of how I sit.

For instance, last time I got a new wheelchair, a big point of contention was the fact that I lean so far to the right and put almost all my body weight on my right rib cage. It’s a completely acceptable thing for the therapists and wheelchair representatives to be concerned about. However, and this is a big however, I physically can’t hold my head up or move my arms if my body is adjusted even several inches to the left. When I explained this to them back when I was 13, they essentially ignored me and played the “We’re specialists so we know better than you” card. It was extremely frustrating, as they lifted me from one chair to the next, while I knew just by looking at each chair that it wasn’t going to work.

They always said things like, “Well maybe if we reclined the chair your body would naturally rest on the backrest rather than your side. Or maybe we should look into a head strap that will hold your head in place since you can’t hold it up when you’re in the proper position.”

I responded, “But I would literally have to be almost fully reclined all the time, and I can’t drive that way, so that wouldn’t work. Also, I definitely do not want a head strap.”

Then came their line that filled me with so much anger that my eyes used to tear up, “Well Shane, we might just have to compromise on this one.”

It felt like they were ignoring everything I said, and to be told that I was going to have to wear a head strap from then on, with no say in the decision, was more belittling than you can imagine.

Similar arguments took place for many aspects of my wheelchair, not just the side support, so you can begin to see how I’ve grown to hate the process so much. The fact is, the specialists were usually wrong. They’ve been telling me since I was four that I’m going to get skin breakdown from leaning on my right elbow all day, and that we should look into a bunch of different methods to take pressure off my elbow, methods that would render my right arm unusable. Every six years I fight them off and somehow convince them that my elbow will be fine. Almost 20 years of leaning on my right elbow have gone by, and guess what, not once have I had any breakdown of the skin.

My wheelchair and all of my quirky positions work for me. I’d prefer not to change that.

With all that being said, this past Monday night went very smoothly. Maybe it’s because I’m over 18 now, maybe I was better able to explain my circumstances this time around, but the wheelchair specialist and my physical therapist both seemed to understand that I want to keep as much the same as possible. We’re ordering the newer model of the same chair, and we’re basically just going to re-create the seating position I currently use. It was a giant relief.

Now for the fun part! With a new wheelchair on the way (a process that will take 4-5 months… stupid insurance) I feel like the proper thing to do is take some time to honor the valiant life of my soon-to-be old wheelchair. We’ve been through a lot together… some fun, some shit, but all worth remembering. So I’ve decided to write a letter to my wheelchair to let her know how I really feel.

Dear Darla,

The time has come to say goodbye. But before you go, let’s reminisce about all the memories we’ve shared.

There were the countless feet that we have run over together. Most of the time it was an accident, but sometimes we did it on purpose and disguised it as an accident. Other times we ran over feet because people asked us to, not in a fetishy kind of way, more of a, “Run over my foot I want to see if it hur… OH GOD GET OFF GET OFF!”

There was the time we stayed outside in the summer downpour against all reasonable logic, and you broke down for three fucking days. I had to sit in a very old, very uncomfortable, manual wheelchair while you were being repaired. Andrew parked me in the corner and told me I was in timeout probably 100 times during those three days. Without instant Netflix, I probably would have died.

There was the time we were in the car together, not strapped in because we like to live on the edge, and when mom had to slam on the brakes, you rocketed towards the front of the van, since I had also forgotten to turn you off, breaking my big toe as we collided with the drivers seat. It was a learning experience though, we still don’t strap you in, but I at least remember to turn you off.

There was the time you threw me out of the safety of your seat when I ran over a soccer ball with you. The broken femur I suffered put me out of commission for a month. I still kind of hate you for that, but forgiveness is a process.

There were all the times we were an awesome street hockey goalie. Your 450 lbs of steel and brute force, combined with my cat-like reflexes and determination to win made quite an impressive team.

There was the time our road froze over and we had drift races until my entire body was frozen solid.

There were all the times when I used you as an excuse to get out of class early throughout high school. I think teachers are programmed to just say yes whenever someone in a wheelchair asks to do anything. “Mrs. Smith, can I be excused from class now to beat the crowd?”

“Shane, there are 20 minutes left in class.”

“Yeah but my wheelchair…”

“OH OH I’m sorry, yes, go right ahead. Do whatever you have to do. Here are the answers to tomorrow’s test.”

There was the time I missed the birth of my first-born son because I forgot to charge you the night before.

There was the time I burned holes in your controller interface because I wasn’t paying attention while playing with fire.

We have traveled hundreds of miles together. We went through puberty together. We made friends together. We experienced life together. I can never thank you enough for all that you’ve done for me. You will never be replaced. You will never be forgotten.

Unless, of course, my new chair is a lot cooler.

http://www.quickmeme.com/Frustrated-FIFA-Ferdinand/

Jon is the kid from this story.

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When I was in 11th grade, I was forced to take an adaptive physical education class, much to my dismay (I just wanted to be in a normal class with my friends).  This class consisted of me and two mentally challenged students, not that there’s anything wrong with people who are mentally disabled, but honestly, these kids both smelled like there was always a giant pile of poop in their pants and all they talked about were Disney movies. It was difficult for me to be enthusiastic in that situation, especially when my friends relentlessly joked that maybe I belonged in that class.

After a few days of class, I got over it because I realized that I would be able to participate a lot more in this class, since I did not have to worry about volleyballs or basketballs flying at my face at 90 mph.

Anyway, there was a particularly warm day in October when our gym class decided to go outside. Usually this meant a slow and extremely boring walk around the perimeter of the high school, but for whatever reason I asked if we could bring a soccer ball out to mess around with, which is kind of ironic in hindsight, because the gym teacher was the only one in the class who could physically kick the ball with any sort of accuracy.

We went to the tennis courts and the gym teacher took turns rolling the ball to each one of us. My way of passing the ball back to him involved driving my chair at the ball and bumping it with the front base of my wheelchair. I quickly got bored and asked the teacher to give me some full-court passes that I would attempt the stop, and then pass all the way back to him. All was going well and I was fairly confident that I was the best wheelchair soccer player ever. Then my gym teacher decided to kick me a different ball that we had brought out. This ball was much softer than a normal soccer ball, so by the time it reached me on the other side of the court, it was carrying very little momentum, not enough for me to pass it all the way back to him. I stopped the ball with my wheel and then backed away from it until I was about 20 feet away.

In a moment that still seems unreal to me to this day, I drove my chair at top speed (10 mph) towards the soccer ball, but as I hit it, my front right wheel drove up over the ball due to its softness. In a matter of a few terrifying seconds, my body was thrown out of my chair and came crashing down to the tennis court below. I opened my eyes and looked around, I was in shock, mostly because of the look on my gym teacher’s face as he sprinted towards me. He must have been confused when the first thing out of my mouth was a small laugh, but all I could think was “Holy shit, that must have looked so awkward/stupid/painful” and I was delighted by the fact that I was still alive. I was lying at an awkward angle and I asked him to roll me onto my back; he said my head was bleeding. Apparently I had landed completely upside down, directly on my head, before the rest of my body toppled over.

Because of my disease and my inability to bear weight, I have extremely weak bones. Every law of nature says that I should not have survived that incident. The speed and angle with which I landed on my head was easily enough to snap my neck. However, I believe chance was on my side that day, because I ended up only breaking my femur and cutting my forehead, which put me out of commission for a solid month, but that is another story for another day. To this day I still have terrifying visions, usually when I’m trying to fall asleep, about how bad that day could have been, but it makes for a great story and it’s always funny to see people’s facial expressions as they imagine me falling out of my chair.

Side note: If you ever fall out of your wheelchair during gym class and think that you may have a broken leg, do not tell the gym teacher that you’re fine and that he should pick you up and put you back in your chair! It turns out that broken femurs do not support weight very well; I want to throw up just thinking about it.