I want to make people laugh and show them the power that a positive attitude can have on their lives.
It still feels pretty daunting right now, but I’m super motivated to make it happen. Luckily, there are some amazing people in my life who share my determination to make this dream a reality.
I would love to hear any thoughts/ideas/suggestions that you might have?
I recently found myself lying on the wooden deck that surrounds my cousin’s pool, just basking in the beautiful sunlight, and loving everything about the world. Pat and Andrew are taking turns trying to drown each other in the pool next to me, while I stare into the sky and try to convince myself that the group of clouds above me resembles two frogs doing Kung Fu. As the frog clouds slowly morph into less definable shapes, I close my eyes and go back to waiting for the sun to make me tan. Unfortunately, or perhaps fortunately, I am unable to lie and simply stare at the insides of my eyelids for very long before my mind begins to wander.
I think about how happy I am, how good the sun feels, how badly I’m going to regret not using suntan lotion, how it doesn’t really matter if I use suntan lotion since skin cancer usually doesn’t develop until way later on in life, how much it would suck if I ended up dying of skin cancer before my SMA killed me, how I will definitely remember to use suntan lotion next time, how perfect the day is, how soon the pizza will arrive, how awkward my arms look sprawled out like tiny pterodactyl wings, how refreshing the water is about to feel, how I haven’t written a story for the blog in a long time, how I really need to find some inspiration for a story, how my followers are going to hate me if I don’t, how I’m probably overreacting, how I’m going to lose my shit if that yellow jacket lands on my body, how I could maybe try to write about swimming and all of the ways it has affected my life, how that actually might be a good idea!
I lie contently in the sunshine and think about how I could start the post with one of my earliest recollections of swimming. I’ve never been able to swim on my own, but I fell in love with swimming before I can even remember. My grandfather had a very large in ground pool that my family spent many of our summer days in or around. My dad used to hold me in the water, upright, so I had control over my neck as well as my arms and legs. As a little kid I loved being in this position in the water because it allowed my arms and legs significantly more freedom to move than I had in my chair. Around six or seven years old I discovered the magic of being underwater, and my time in the pool with my dad became a constant pattern of him submerging me underwater, walking around to make me feel like I was “swimming,” and bringing me up after some time to make sure I was still alive. I don’t know what it is, but to this day being underwater still feels like something my body should not be capable of, which is why doing it is so damn fun. I used to pride myself on the fact that I could stay underwater for over 40 seconds, one of the very few physical feats that even my brother could not accomplish.
I laugh to myself as I begin to think about how my parents signed me up for a pool class for children with disabilities when I was very young. It was around the same time when I was beginning to prefer being underwater more than above. My young, stupid mind assumed that this pool class would be a place to improve my underwater swimming skills even more. Imagine my surprise when the first activity we did involved singing “The Itsy-Bitsy Spider” while our parents trickled water on our heads with a sponge. You’ve got to be fucking kidding me, right? Most of the kids in the pool were teenagers, and it shocked me when a few of them started crying/spasming/screaming as the water touched their heads. I spent the remainder of the song eyeing up the other parents, trying to assess which ones would be able to move their kids the fastest in the underwater races that I assumed were coming up soon. My dad must’ve realized how annoyed I was, because he quietly excused us from the sponge-water baptism torture circle and helped me swim around underwater on the other side of the pool. The races with the other kids never came, so my dad and I never came back for the second session.
Pat gets out of the pool because he’s apparently bleeding out after Andrew cut him during their fight. Andrew is the only one in the pool and I begin to think about how he kind of almost drowned for real when we were little and how scary that was. Our family was staying at a random hotel in a random city. I can’t remember why, probably some type of MDA function. The hotel had a large indoor pool, so naturally we begged our parents to take us down the minute we got there. The poolroom was eerily uncrowded; only one other person occupied the huge space, and he was reading a book at a table in the corner. I was delighted because at this point in my life it was still embarrassing to be carried around the pool in front of large numbers of people, but one old guy reading didn’t bother me.
Andrew asked if he could jump in, and my dad said sure as long as he stayed in the shallow end, since seven-year-old Andrew didn’t really know how to swim yet. I watched in increasing horror as Andrew cannonballed into the shallow end, and proceeded to not return to the surface. Luckily, it didn’t take my dad long to realize that his son was dying. I’ve never seen my dad move as fast as he did in that moment, jumping into the water to pull Andrew to the surface. The old guy in the corner stared with his mouth literally hanging open, which we joke about in retrospect. After Andrew stopped coughing and crying, my dad made him realize that all he had to do was stand up and his head would have been a foot above the water. I don’t know if it was the terror or the embarrassment, but Andrew decided he didn’t like swimming for a few weeks after that.
I think about another time when I decided I did not like swimming either. My family and I were at a lake for the birthday party of my childhood best friend, Ben. Dad was holding me in the water, dunking me and “swimming” me around the confines of the swimming net, which marks the safe area to swim. While I was hovering a few feet under the water, I noticed a long black object move past my face. I frantically gave my dad the signal to bring me up—a tap on his wrist—and as soon as I reached the surface I babbled something along the lines of, “dad ohmygod there’s a snake in here get me out get me out now hurry it swam right in front of me hurry!”
“It was probably just seaweed or a tree branch, don’t worry,” he said, severely underestimating the intensity of the situation. But he nonchalantly made his way to the beach, while I floated through the water with my muscles contracted as tight as I could squeeze them, which was my pathetic attempt to guard myself from the snake.
When we got out, everyone made fun of how afraid I was of the imaginary snake. I hated them, and I wished they would go into the water and get bitten by it and drown. A few minutes later, a massive group of people came sprinting out of the water and ran to the lifeguard stand. The lifeguard grabbed a net on a long pole and dashed into the water. Several minutes later he walked back onto the beach with a long black snake in his net. I felt vindicated and oddly triumphant, and I let everyone know it… several times. To this day I don’t swim in lakes. I will gladly put a snake around my neck at the pet store, but wild water snakes are scary as shit.
As my cousin Becca brings her iPod speaker out onto the deck and turns on Circa Survive, I think about how I was in almost this exact position when I discovered Circa Survive. Becca and I were in eighth or ninth grade. (note: this is not the same cousin Becca that I went to high school with. I have two cousins named Becca on separates sides of the family. We are all the same age. I know it’s confusing, but you will make it!) We were laying on beach towels next to the same grandfather’s pool that we grew up in. It was near the end of August, around the time of year when you start to feel autumn approaching in the distance. Becca pulled one of her earbuds out and put it in my ear. “Listen to this guy’s voice,” she said. Although I didn’t know its name at the time, she put on the song Living Together. A surreal feeling washed over my body, and suddenly, despite the August sun, I was covered in goosebumps. Something about the song triggered a change in my body. Up until this point in my life, my favorite bands consisted of Puddle of Mudd, Linkin Park, Nickleback, and Eminem, because music never really meant anything to me other than something to listen to because popular people listened to it. I wasn’t even aware that there were bands out there that weren’t on the radio. Immediately, everything I thought I liked about music completely changed, and I was more than the excited about it. That moment also catalyzed the beginning of a closer relationship between Becca and I. She and I didn’t used to hang out very often, because we went to different schools, but on that day we discovered a common passion: the atmospheric, heavenly, emotional, and inspiring sound of Circa Survive.
Andrew splashing cold water on my frying skin abruptly jerks me out of my daydream, and I decide it’s time to get back into the pool. It feels great to finally have found inspiration for a new story, but the water feels even better. Andrew submerges me under the surface. I look around as the chlorine burns my eyes and smile. I don’t know if I’ve ever been as happy about my life as I am in this exact moment.
Maybe on days that I don’t post long stories I will post a quick rundown of my daily doings. That’s what a blog is supposed to be, right?
-woke up at 6 AM since my family leaves by 7. Vomit.
-took my weekly shower. (I’m joking, please no messages asking if I’m serious. I don’t shower weekly… I shower monthly.)
-watched the first episode of Game of Thrones.
-picked up the pieces of my blown mind. That show is so good.
-watched 2 more episodes.
-went out for pizza with my friend Michaela.
-watched 3 more episodes.
And tonight I’m going to a Lehigh Valley IronPigs game. They’re the AAA affiliate* of the Philadelphia Phillies. But right now, time to watch another episode.
*I spelled this correctly on my first attempt!
My family and I leave tomorrow for a week in Ocean City, Maryland.
I am super excited. I absolutely love the beach, which is kind of odd I guess, since I can’t really do anything on the actual beach. My dad bought a special manual wheelchair for on the sand, so I sit in that, get pushed by someone to wherever we setup our towels and stuff in the sand, and I basically just chill there watching my brother play in the ocean. I would be lying if told you I am completely content just watching everyone else in the ocean, but I have been an observer my entire life, and I honestly enjoy it. I can go in the ocean if someone holds me, but that is kind of extremely difficult for whoever is holding me because of the waves, not to mention really embarrassing (I know I need to get over it, but let your mom or dad carry you like a baby down to the ocean and dunk you in the ocean and you’ll understand why it’s embarrassing).
When I get bored watching everyone in the ocean, I like to lie out on a towel to tan my sexy body. I used to not even take my shirt off at the beach, but I have given up the mindset that girls will come up and talk to me just because my shirt is on. I figure, if my body repulses people, those people aren’t meant to be my friends anyway.
We always make sure that our hotel or condo has a pool because that is where I have the most fun at the beach. I can’t swim by myself, but my dad carries me into the pool, which works out great. I tell my dad to put me under the water, and when he sees bubbles, he knows that’s the signal that I am running out of oxygen. He also throws me away from his body sometimes, and walks over to pull me up before I drown. I love being underwater because gravity is not working so hard against me and I can move my limbs much more freely than when I’m in my chair. It’s always hilarious to see the terrified facial expressions on the other people at the pool as they watch a severely disabled kid get carried into the pool and then thrown from his carrier’s hands.
I also really enjoy the boardwalk and eating out at restaurants and just spending time with the family. It’s going to be awesome. I don’t really have a conclusion.
(Also, I’m going to put the link for my dad’s book on here one more time later tonight. Feel free to rape the reblog button.)
A few posts ago I mentioned I would tell you guys about the random trouble my brother and I get into to entertain ourselves. This is one of those stories and it took place probably 5 to 6 years ago, so I was about 13 and my brother was about 10. Enjoy.
It was a hot and humid summer day in Pennsylvania, and like most other kids our age, we were bored out of our minds. Back then we spent most of our summer days hanging out with our next door neighbor, who was a year younger than me and would eventually grow up to be on of my closest friends (he is the kid in the rainbow vest in the picture I posted). Neither of our family’s had a pool and we were tired of spraying ourselves in the face with the hose, so we settled for shooting hoops in my neighbors back yard.
His house had a large wrap-around driveway, which created a large paved area in the back that was great for all types of sports. My neighbor’s family had recently installed a super-legit, glass-backboard basketball hoop that made us feel like we were training to someday play in the NBA. I can’t shoot a basketball so I would usually just play defense and try to ram my brother’s shins whenever he tried to shoot. I also set picks like a monster. I once almost killed a kid at recess when he blindly ran full speed into one of my immovable wheelchair picks, but I digress (I love saying that).
Anyway, after a while one of us threw out the idea that it would be awesome if we could dunk. Of course that would be awesome, dunking was the coolest thing ever back in those days. Too bad that super-legit basket was also super-too-high for us children to reach. We considered, and even tried using a mini workout trampoline to dunk, but we were just too young and short. By we I mean them, I was just too much in a wheelchair to dunk.
I am admittedly a very stubborn individual sometimes; when I get an idea in my head, I can be extremely annoying/pushy/relentless until I accomplish whatever I am trying to get done. This was one of those times. I knew there had to be a way to help my friends dunk. Before telling them my idea, I told my neighbor to go grab the long rope his parents kept upstairs in case they ever had to climb out a window during a fire. Don’t ask. Whether it is a good or a bad trait, I am also pretty good at manipulating people, not in an evil way, just in the kind of way that I knew once he went through the work of acquiring the rope, he would be less likely to not allow me to at least try my idea.
Once he had the rope I explained that our and his parents might not like what we were going to do but none of them were home and it wouldn’t take long so everything would be fine. My idea was to tie a noose on one end of the rope for my brother to lay in, loop it up over the basketball hoop, and attach the other end to my wheelchair. I would drive in reverse, which would pull my brother up to the height of the rim and he could chill there while we threw him alley-oops. It was perfect and nothing could go wrong.
My brother and neighbor surprisingly agreed and we started setting up the system. My brother, being the youngest and daring-est of the 3 of us, just assumed that he would be the one being pulled up to dunk. On our first attempt, as I slammed my chair into reverse, my brother shrieked in pain and I quickly let him down before he was a foot off the ground. The rough rope on his bare skin (he had his shirt off because it was hot), in addition to his body weight being supported by a rope going across his stomach, apparently hurt pretty bad. I told my friend to go grab a couch pillow.
The next try, with the couch pillow between the rope and my brother’s body, worked much better, and to all of our amazement, he started lifting off the ground towards the basket. I drew you a very detailed picture of what we looked like at that point (I forgot to add my neighbor):
Then we had a problem. My wheelchair ran out of strength to keep lifting him and despite being in full reverse, neither of us were moving. My neighbor ran over, grabbed the rope by me and pulled with me; slowly my brother inched higher. When my brother neared the top he got a lot heavier, which is probably some kind of physics problem, but I don’t understand it. My tires started spinning and we lost a little ground. For a good 5 minutes we battled gravity in this manner, while my brother bobbed up and down like something that bobs up and down.
All of a sudden I heard someone scream, “WHAT ARE YOU GUYS DOING!?!?!” It was my dad and to my relief he was laughing. He walked over, saw us struggling to keep my brother in the air and said that probably wasn’t very good for my chair. Defeated, we lowered my brother back down and begrudgingly untied both ends of the rope.
Then I had an even bigger problem. I noticed my wheelchair would only turn left; I couldn’t drive in a straight line or turn right at all. My dad noticed too and came over to see if the rope had knocked something out of whack. Angrily, he said everything looked ok and started scolding us for our great idea.
It turned out that our little stunt had completely destroyed both my rear gear motors, both of which had to be replaced at the price of $4000 each. Whoops! Good thing we have insurance!
You have to have fun somehow, and we certainly did.