There is never a dull moment in the Burcaw household, and this afternoon was a perfect example of that.
My friend Lily (lilygnilu.tumblr.com) and I hung out at my house today. We spent most of the afternoon working on nonprofit activities, but eventually the beautiful day persuaded us to go outside. As we made our way to the patio in my backyard, we heard a loud, rapid flapping noise coming from above.
My mom loves birds. Our backyard is filled with birdhouses, birdbaths, bird feeders, and lots of birds, but this flapping noise was louder and more annoying than the usual chorus of obnoxious bird noises that normally fill the backyard. We quickly located the source of the noise. Below one of the wooden birdhouses near the roof of our deck, in a tangled mess of ivy, was a puffball of feathers in complete spazz mode.
Lily cautiously approached. Even though the psychotic bird was a solid 3 feet above her head, she clearly feared that it was going to burst out of the ivy and peck her to pieces at any moment.
“Oh no! It’s stuck!” Lily yelled in horror, “What do we do?”
Upon closer inspection, she discovered the bird’s foot was caught in some plastic that was also caught on the ivy branch. It was decided that we obviously couldn’t just leave the bird hanging upside down where it would die a slow and lonely death. We had to rescue it.
It’s important to understand the conflict of this situation. Lily desperately wanted to save this bird’s life, but at the same time, touching the bird, or even getting too close was overwhelmingly scary. Her initial reaction was to climb onto the railing of our deck (which sits about 8 feet off the ground), but before she was able to stand all the way up, I convinced her to get down. If the bird would’ve spazzed while she was balancing on the railing, she definitely would’ve fallen to her death and this post would be way less fun to write.
I told her to grab a stepping stool, a box, and scissors from inside the house. While she was inside gathering supplies I realized it was probably good that we were the only two home. My brother would’ve handled this situation with a baseball bat, and it would not have been pretty.
Lily returned with the supplies and set up the stepping stool to better assess the situation. While she was carefully and fearfully surveying the damage, my cat jumped up on the railing and began trying to climb the wooden post up to the birdhouse. I hope she doesn’t get mad at me for saying this, but Lily basically lost self-control at this point. There was lots of shrieking and all I heard was “OHMYGODIDONTKNOWHOWTOHANDLETHISWHATDOIDOHELPMESHANEAHHHH!”
Somehow she was able to pull it together and found the strength to grab Oreo (my cat) and put her inside. Lily was on the verge of tears. I was sitting down below, laughing hysterically, but trying to be as sensitive as possible. It was funny, but I also didn’t want the bird to die.
After she had calmed down, Lily and I devised a plan to cut the branches around the bird so that it would fall into the shoebox that she would be holding below. Amazingly, the plan worked to perfection. It is worth noting (if it’s not obvious) that Lily carried out the plan completely on her own. She had to balance on the stepping stool, while cutting the branches with scissors in her one hand, and holding the shoebox for the bird to fall into in the other hand. It was rather spectacular.
Now the bird was in the shoebox, but still far from being rescued. It flopped around in the box, getting blood (not sure where the blood came from) and poop everywhere, its foot still firmly bound to the branch that Lily had cut loose.
For the next half-hour we tried to figure out how to free the bird from the plastic without Lily having to touch it. She called her mom seeking guidance, but the first thing her mom said was, “DO NOT bring that bird home.”
Lily was too emotionally, physically, and mentally spent to perform the necessary task on her own. So we called Pat, who was in the process of buying a suit for prom:
Lily: “Hey Pat, I’m with Shane and we have an emergency. We have a bird in a box and its leg is caught in plastic and it’s going to die.”
Pat: “That’s not an emergency.”
Lily: “Well it is to us. We need you to come to Shane’s as soon as possible. I know you are buying a suit, so don’t rush, but you have a life on your hands now, so the faster the better.”
Pat: “*laughs* Ok I will be there as fast as I can. It’s going to be at least a half hour though.”
The next half-hour was packed with emotion. We named our bird Benigna. We told her stories and asked her questions and talked about life and death. We wanted her to feel loved in case Pat didn’t make it on time or something went wrong in the plastic removal procedure. There were laughs. There were tears. Meanwhile, I secretly researched the best way to euthanize a bird on my phone, just in case.
Benigna was a fighter, though. She was alert and calm when Pat showed up to save the day. I immediately began to prepare Pat for surgery, filling him in on what had happened (trying not to laugh too hard) and explaining what had to be done.
Pat basically ignored the plan I had laid out for him, which involved him subduing Benigna, while Lily delicately cut away the plastic with the scissors. Instead, he grabbed the bird with his right hand, and started to gently loosen the plastic with his left. He was so graceful and compassionate that I wondered if he had done this many times before.
It might have taken him a total of two minutes to free Benigna, if you subtract the time where she jumped out of his hands and hid under a bush. We cheered as he removed the last of the plastic and Benigna fluttered over to my mom’s garden to recover (hopefully lol). Relief washed over us. Mission accomplished. Life saved.
Had there been an audience, the three of us would have received a standing ovation.
The gem I just dropped
Would make any woman say,
“He went to Jared”
I posted some bathroom humor earlier tonight, COMPLETELY forgetting that I decided last week start a new weekly post called “Toilet Haiku Tuesday!”
From now on, every Tuesday I will reblog the haipoo that made me laugh the most from the previous week. Make sure you submit your best haipoos to toilethaikus.tumblr.com for a chance to have your poem featured!
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.
“Mom, PLEASE!” I whined. She had to say yes. She had to.
“I just don’t understand why you need to be up on his porch,” she replied for probably the 5th time, starting to get annoyed.
“Mom, we want to have a HUGE battle and there are no good places to hide our army men down on the sidewalk. All you have to do is carry me up there, and I’ll stay there for a long time, so you won’t have to help me back into my chair for a while. Please!” I argued back, knowing how upset my friend Ben would be if we had to set up our toy army men figures down in his front yard where we always set them up.
“Fine, let’s go.” She gave in, and my excitement soared.
Sitting anywhere other than in my wheelchair was difficult, but my mom positioned me with my back in the corner of two walls on the concrete floor of Ben’s front porch. It was uncomfortable, but supportive enough to hold me upright. I promised her that I would be careful and that she could go back across the street to our house. I reiterated that I would not bother her again for a long time.
Ben brought out his enormous tub of green army men, and we began setting them up in awesome arrangements around his porch. (Looking back, I realize this is all we did. We simply enjoyed “setting up” the army men for battle, but we never actually played the “fighting” part.)
Then we heard the buzzing. A cicada killer swooped down from the trees above and landed on the floor a few feet away from us. Bees of any kind scared both of us more than a little. We froze. Unaware of what a cicada killer was at that point in our young lives, the two of us stared in horror at the biggest hornet either of us had ever seen. This beast could have easily stung us both to death and swallowed us whole with little to no problem.
I panicked; “helphelphelphelphelp” was all that came out of my mouth.
“I’ll go get your mom,” said Ben, bravely standing up and preparing to dash past the slowly approaching monster.
“NO PLEASE NO! She’s going to get really mad if I ask her to come back so soon! Don’t leave!” I cried. In reality, my fear of getting stung by the giant hornet far exceeded my concern for irritating my mother, but I was also equally afraid of being left alone to die while Ben went to find my mom. I am completely helpless when I’m not in my wheelchair. Even at the age of five, Ben was a loyal companion; he wasn’t going to leave me stranded on his porch.
The next several minutes are cloudy, probably the result of my brain repressing this awful experience, but somehow we ended up huddled in the corner together, armed with a large bottle of insect-repellent cream.
Naturally, we assumed that the cicada killer would want nothing to do with us if we smelled like insect-repellent… so we showered ourselves in it. We smeared handfuls of the white cream on our arms, legs, and faces, not even bothering to rub it in. I had Ben pour the cream on the top of my head and also asked that he put a few globs in the open end of my shorts, which were hanging wide open due to the way I was sitting with my knees up. Ben did the same. You could have smelled us from a block away, and our clothes were ruined, but we felt a little safer and ready to take on the killer.
No sooner had we prepared for the battle of our lives, the cicada killer decided to fly away.
Victory.
It’s 3:00PM on a humid day in July. Instead of racing around outside with my neighbors like I should be, I’m sitting on the toilet, strapped into my specially adapted backrest, quietly weeping at my ridiculous situation. What is wrong with me? On my bare lap sits our house phone, waiting for me to gather the nerves to call Ben.
***
A few hours before I found myself crying on the toilet, Ben and I had been spending the day the same way we spent every day of our summers, playing cops and robbers, cowboys and Indians, and other crazy games of our young imaginations. On that particular day we were constructing an epic volcano in Ben’s backyard sandbox. By “we” I really mean Ben. Sitting in the sandbox was difficult for me at this point in my life, so I sat above in my wheelchair and played the role of bossy six-year-old who wants to help but can’t sit in the sand.
“The left side needs more sand.”
“Careful you’re gonna wreck it.”
“You should try to dig a moat around the outside.”
“Oh my God! Move, move, move! I just saw a huge pincher-bug by your foot!”
The pincher-bug I spotted quickly destroyed our desire to finish the sand volcano, even though Ben’s mom was going to allow us to make it erupt with vinegar and baking soda. Instead, we spent the next hour spraying stuff (mostly each other) with Ben’s garden hose. It was around this time, after drinking copious amounts of water from the hose, when I noticed that I needed to pee.
In my early elementary school days, I viewed going to the bathroom as nothing but a nuisance. During the summer, bathrooming meant stopping whatever awesome game Ben and I were playing, returning to my house, having my mom carry me upstairs to the bathroom, undressing, using the toilet, redressing, being carried back downstairs, and finding Ben again. The whole process probably took 20 minutes, but that’s a lot of time to a six-year-old. For this reason I chose to ignore my bladder on most summer days, holding my urine until it became painful and then some.
The “full bladder pain” became noticeable while we were playing with the hose, but I put it out of my mind when Ben’s mom brought out a new super soaker to play with.
Half an hour later, as we quietly crept around the back of the bank that we were robbing (our neighbor’s shed) with our fully loaded super soaker, I began to sweat. My breathing became rapid and shallow. This was not a nervous reaction to the felony we were committing, but rather my body trying to tell me that I was going to explode if I didn’t pee soon. But you don’t just go to the bathroom in the middle of stealing one billion dollars from the most highly guarded bank in the entire world.
When the bank guards open fired with their machine guns, Ben leapt behind a birdbath and fired back at the windows of the shed. It was the climax of the heist. Ben desperately shouted for me to run in for the money while he covered me, but I couldn’t pretend anymore. I couldn’t even move. A small trickle of urine forced its way out of my body and I lost control.
I closed my eyes and basked in the orgasmic feeling of my painfully swelled bladder emptying. Nothing on earth mattered. Not the fact that I was peeing in my pants. Not the fact that I was doing so three feet away from my best friend. Not the fact that I was in the middle of my neighbor’s back yard. Not the fact that halfway through the emptying I was sitting in a warm puddle. Not the fact that six-year-olds don’t pee in their pants. Not the fact that it was running down my legs into my shoes and socks. Not the fact that my mom was going to kill me. Not even the fact that Ben had been shot by the guards and was now lying dead next to me.
“I’ll be right back.” I said nervously as I finished peeing and started for my house. I didn’t think Ben noticed what had just happened, and keeping it that way suddenly became my biggest priority. He’d obviously never treat me the same way if he knew I was a baby that peed his pants. I was entirely convinced that he would associate me peeing in my pants with me being in a wheelchair and he wouldn’t want to be my friend anymore.
***
I dialed Ben’s house number through watery eyes from the seat of the toilet. His number was the only phone number besides our own that I knew by heart, probably from calling it every morning to find out when he could come outside to play. As it rang I gritted my teeth and tried unsuccessfully to stop my hyperventilating breaths. I hated my mom for making me do this. She had reacted exactly how I had expected her to when I arrived home. Lots of yelling about how I needed to learn to stop what I was doing when I had to go to the bathroom. Playing is not more important than taking care of your body, blah, blah blah.
When she asked if I still needed to go more, I lied and said that I did, making the brilliant reasoning in my six-year-old brain that she would not be as mad if she knew that I had at least been able to somewhat control my bladder. She was. My chair was literally dripping with piss.
After strapping me onto the toilet, she handed me the phone and said, “Call Ben and tell him why you are not allowed back outside today.”
I stared at her in horror, knowing she had already made up her mind.
Ben’s mom answered the phone, “Hello?”
“Hi… is Ben there?” I sheepishly asked. I felt like she knew.
“I’ll go find him. I thought you guys were outside…”
“Hello?” It was Ben.
“Hey Ben,” I started crying again, glancing to make sure my mom wasn’t in the bathroom, “Ummm… I can’t come back out to play.”
“Aww man! Why not?” he moaned.
“Well I was really really sweaty when I got inside, and (huff huff huff) my underwear and shorts and wheelchair were like wet from the sweat, but my mom thought it was pee so she grounded me. She thinks I peed in my pants.” I lied, still extremely embarrassed by the fake story I was telling him.
“Oh… darn. Ok well can you play tomorrow?”
Tomorrow we did play, but before we tried to rob the bank again, I went back to my house to get ammo and body armor (and to use the bathroom).
Yesterday was just a normal day… sort of. Although I’m on winter break, my dad woke me up at 6 AM and helped me get ready for the day, which included putting on sweatpants and a T-shirt, and handing me a cup of coffee with a pink bendy straw. I sat in my living room, mindlessly staring at ESPN, enjoying my coffee, but yearning to be back in the cozy warmth of my bed. If you remember one of my earlier stories, you know that my sleep schedule is very much dependent on the lives of my family members. On this day, both my parents had to leave for work by 7:30 AM, along with my brother, who left at the same time for high school. Angry is not the right word to describe how I feel about having to live this way, more like reluctantly accepting. It is what it is.
This story really has nothing to do with my sleep schedule, but I want you to understand that yesterday was just like any other day; I woke up early, my family left, and I was home alone until about lunch time when my cousin Sarah came over to hang out.
However, one tiny factor made yesterday a little bit different from most other days, and it ended up causing something pretty ridiculous to happen.
I decided not to do my feeding tube the night beforehand because I hadn’t been feeling too well and the idea of a tube tickling the back of my throat all night was not as enticing as it usually is. Skipping my overnight feed (I’m a vampire) is not a big deal. I usually take one night off each week to give my repeatedly assaulted nasal cavity a break.
Over the past few months, I have discovered an unusual side effect that occasionally occurs the day after I choose not to do my feeding tube. Once again, unusual is probably not the right word, more like extremely unhealthy and frightening. Here is what happens: At some point during the day after I’ve skipped a feed, there comes a point when, seemingly out of nowhere, my body is overwhelmed with an incredible feeling of hunger. Not your typical “I missed lunch, now it’s dinner time, so I’m going to eat a lot,” type of hunger. No, this is far scarier than that. In a matter of a few minutes my entire body becomes extremely hot, basically feverish, and begins to sweat. From my toes to my head, I literally feel drips of sweat soaking into my clothing… its rather disgusting. Then, my whole body starts to tingle, like the feeling you get when a numb body part regains feeling, except everywhere. All of these alarming symptoms that spring up out of nowhere are centered in a dull, achy feeling of nothingness in my stomach.
The first time this happened was the day after I skipped my feeding tube for the first time. It was midmorning and I hadn’t eaten breakfast yet, and when the symptoms started, I honestly thought I was having a heart attack. I probably would have freaked out a tiny bit had it not been so obvious that this reaction was a result of the intense feeling of hunger that I suddenly felt. I scrambled my chair to the kitchen and asked my mom to warm up a bowl of leftover spaghetti, because that’s the first thing I saw in the fridge. I inhaled that spaghetti like it was the antidote for some deadly poison that I had ingested, and in a way, it was. A few spoonfuls into the bowl, I started to feel the symptoms residing. Relief flooded my mind and I promised myself that I would remember to eat plenty of food whenever I skipped my feeding tube from then on. I’m not a doctor, but it seems rational that my body is so adjusted to receiving 1500 calories overnight that when it doesn’t receive these calories, it loses its shit if I don’t give it enough fuel the next day. I should probably be a doctor.
Anyway, this insane hunger reaction only occurred one more time after the first one, but it wasn’t a big deal because I knew what I needed to do to fix it, and my mom was already in the process of cooking breakfast when it started. Until yesterday.
My quick-witted followers may already be noticing a problem. You see, the first two times I had this reaction, it was luckily the weekend and my family was home to help me get food. Yesterday, everyone was out of the house by 7:30 AM, and Sarah wasn’t coming over until 11-ish. Here are the ridiculous events that transpired yesterday morning. Spoiler alert: I didn’t die.
All I had for breakfast yesterday was a half a cup of coffee and a few sips of a milkshake. Totally not enough to sustain me until lunch, and I knew that at the time, but my hatred for being awake at 6 AM outweighed my desire to worry about my health by about 1 million to one, so I put very little thought into my small breakfast.
A few hours after everyone had left, while I was watching an episode of Mad Men and thinking about the pizza that Sarah and I were going to order, I suddenly felt warmer than usual. My legs started to tingle and as it spread to the rest of my body, I immediately knew what was happening. This was not a good situation, and my usual chilled out demeanor quickly turned to panic. I didn’t know what would happen if I didn’t eat something in the near future, but the sweat soaking my entire body hinted that it would probably not be a pleasant experience. I felt completely and utterly screwed.
I ran through my options in my head. Here’s what’s important to understand, if I absolutely had to I could have called my neighbor or Sarah and asked them to come over and help me get food, but if you know me, you know that I am extremely opposed to asking people for annoying help if I don’t need it. I needed to find food.
Without really thinking about what I was doing, I paused Mad Men and drove my chair to the kitchen. Nothing was more frustrating than what I saw. Food was everywhere, but all of it was just out of my reach. A bowl of grapes sat in the middle of our dining room table, next to a bowl of apples and oranges. Near the edge of the table sat a tin of cookies, several inches out of my reach, but even if I could have grabbed them, there’s no way I would have been able to pull the lid off. On my kitchen counter was a bag of muffins, two feet too high for me to reach. Three more tins of cookies sat similarly positioned on the other side of the kitchen. Food was all around me and I was completely helpless.
I desperately drove into my room, knowing that I never have food in my room, but searching for anything that might somehow help me reach food to quell the otherworldly feeling that now inhabited my body. A pack of Reese’s peanut butter cups sat on my nightstand, a few feet out of reach. It was maddening that I was so close, yet so far from all of this food. My stomach screamed at me.
As I turned around in my room, the greatest sight I’ve ever seen in all my life appeared before my eyes. Across my room, sitting on a TV tray at perfect Shane-height, was a 1-pound box of chocolates that I had received as a Christmas gift. My heart jumped out of my chest and I’m pretty sure I screamed in excitement. However, the battle was not over. My arms are so unbelievably shitty at performing simple tasks that worried I wouldn’t be able to pull the box onto my lap and open it.
I used my chair to gently push the TV tray into a better position, so I could get myself as close as possible. The box of chocolates was only about 6 inches away from my left knee. I used the strength of both my arms to lift my left hand as high as I could, which is about shoulder-height these days, and flung it forward with all my might. My hand plopped about 2 inches short and all I got was TV tray. On my second effort I was able to land two fingers on top of the chocolates, and I slowly began sliding it towards my lap. At this point I was laughing hysterically, possibly because my body was shutting down, but probably because I couldn’t help but think about how stupid and ridiculous this situation was.
“Shane passed away because he didn’t do his feeding tube and had a heart attack after not being able to reach his box of chocolates.”
When I pulled the box onto my lap, I felt the greatest sense of relief that I’ve ever felt in my life, and I’m not hyperbolizing it even a little. My adrenaline gave me the superhuman strength needed to pull the lid off of the box of chocolates. The next 15 minutes are a blur. I sat there in complete ecstasy, shoveling chocolate into my mouth and basking in the feeling of accomplishment that comes from saving your own life. I don’t know if I’ve ever been happier.
I understand that this story might seem insignificant, and it probably is. I could have called someone if I hadn’t found those chocolates, but when you spend your entire life relying on other people for help, doing something on your own feels absolutely incredible.
Next time you are feeling completely helpless, like there’s nothing you can do to fix a problem, keep looking; maybe you will find a box of chocolates.
This is my friend Heather. She’s one of the funniest people in America, maybe the world. You will undoubtedly have a much better life if you check out her blog right now.
When I was younger, probably 13 or 14, I attended a weeklong summer camp for kids with Muscular Dystrophy. In an earlier post I mentioned that this camp is where I first developed a fear of feeding tubes, when a kid’s feeding tube in my cabin fucking erupted like a tiny volcano while he was sleeping one night. If it’s ok with all of you, I’d like to tell you about one more incident that took place at this camp that solidified my belief that I will never get along with other people in wheelchairs. There will also be some side stories sprinkled on top to make this story go down easier.
There was another kid this camp who had the same exact disease as me; we shall call him Tim. I’m going to try my best to be as honest and fair as I can when I describe Tim, but you have to understand, during this week of summer camp, Tim was my archfuckingnemesis. I hated Tim. Today, I realize I probably didn’t give him enough of a chance, and my opinion of him was shaped by my 13-year-old mind, so there is a good chance that Tim is actually a very cool dude (doubt it). However, this was certainly not the case back then. We’ll get to Tim in a little bit.
When I arrived on the first day of camp, the first thing I noticed was that all of the other kids were, or acted, younger than me, which instantly made me have second thoughts about letting my parents leave me here for a whole fucking week. I could smell immaturity in the air. While my parents got me signed in with the camp officials, a bunch of wheelchaired-kids chased each other around, wielding balloon swords. It was obvious that a few of them were young enough that balloon-sword fighting was an acceptable and normal thing to be to be doing. However, a couple of them were at least as old as me, if not older, and it bewildered me how they were getting such a huge kick out of PRETENDING to stab other kids with their balloon swords. I remember wanting to scream at them, “It’s a fucking balloon! It won’t hurt if you stab each other! What are you guys even doing?” It’s kind of interesting to me that this small observation immediately made me dislike every kid at the camp.
Another observation I made in the first few minutes of arriving to camp was that almost none of these kids had shoes on. Some had only socks; most just let their bare feet flop around in the breeze. All of them had severely atrophied ankles, but so did I, and I wore splints that held my feet straight during the day. Over my splints I wore normal shoes, so I was confused to say the least by everyone’s bare feet.
I’m going to do my best to describe my thought process as I began to make sense of the situation. I wore shoes because I often went out in public, where wearing shoes is the socially acceptable behavior. Additionally, I was well aware that my atrophied feet look weird to other people. Growing up in a wheelchair, getting people to view me and treat me like a normal person was paramount. Gross, atrophied feet hanging out for everyone to see were just another reason for people to be hesitant about engaging me as a normal human being. I started to feel extremely uneasy as it dawned on me that none of these kids understood this concept. My young mind started racing. This meant that these kids probably didn’t have too many friends, which meant they probably didn’t understand how to have normal human interactions, which was why they were all acting so immature! It all clicked in my mind. Look, I feel completely fucked up for thinking this way and for judging all of them so quickly, but if I’m going to be 100% honest with all of you, I have to admit that my judgments were actually pretty accurate, which blew.
Am I saying that if you’re in a wheelchair and you don’t wear shoes, you are an immature social outcast? No, of course not, but I’m trying to give you a sense of how I analyze and interpret the world and the interactions I have with people. Unfortunately, the kids at this camp ingrained in my mind the idea that physical appearance has a big effect on how others treat me. I hate to say it, but these kids made me understand how easy it is to look at someone in a wheelchair and write him off as socially awkward because he just doesn’t look normal.
Anyway, after my parents checked me in, it was time to take all my luggage to my cabin, and to meet my personal counselor who would be playing the role of caregiver (which is a word I absolutely despise) during the upcoming week. I was unbelievably fortunate in that my counselor was the chillest dude ever; he genuinely treated me like I was just one of his friends, which made saying goodbye to my parents a lot easier. Once we got settled and all the parents had gone home, I began talking to the other kids and counselors in my cabin. This is when I first met Tim.
Tim is a few years older than me, so during that week of summer camp, he was probably 16ish, making him one of the oldest kids at the camp. I could tell right away that Tim thought he was God’s gift to the camp. He told jokes that weren’t funny and stories that were obviously not true; the other kids completely bought his bullshit, and Tim loved that kind of attention. The best way I can describe Tim for you is that his favorite band was Limp Bizkit.
We all went outside and Tim felt it was necessary to show everyone how fast his wheelchair was. Cool Tim, my chair is fast too. Nobody cares. The most annoying part was that Tim was pretty popular among the counselors, but in the fakest way possible. They had to give him attention; he was constantly trying to impress them, and nobody was going to deny Tim the attention he demanded, after all, he’s in a wheelchair.
The fact that Tim had the same disease as me was really what made me hate him. I felt like I knew him better than anyone at the camp. I knew his SMA did not affect his brain and social skills, so why was he acting like such a doucher? A tiny voice in the back of my mind kept saying, “you’re not so different from Tim yourself.”
It was so completely obvious to me when the counselors pretended to laugh at his jokes and pretended to believe his stories. Tim seemed totally oblivious to all of this, which made me nervous. Was I misinterpreting the counselors’ interactions with me as being genuine, when in reality they were really just humoring me the same way they humored Tim? Up until this point in my life, I felt like I was pretty good at reading people’s faces and their tone of voice to determine whether they were genuinely interacting with me, or if it was the fake “you’re in a wheelchair, so I’m being nice to you” type of interaction. Tim made me severely doubt myself.
On one of the first days of camp, our cabin went to the swimming pool at the camp for the afternoon. This meant that all the counselors had to carry their respective camper into the pool so we could “swim.” Of course, Tim immediately started telling anyone that would listen about how long he could hold his breath. I remember asking my counselor to carry me to another part of the pool where Tim wouldn’t annoy us, which my counselor thought was hilarious. Tim continued telling everyone about how he was a master underwater swimmer or some bullshit like that even though his counselor wasn’t allowing Tim to show off his skill for fear that Tim would drown himself.
Later on, a female counselor I had become friends with was holding me in the water, and we were making fun of Tim and his obnoxious stories. I don’t remember exactly how it happened, but she dared me to challenge Tim to an underwater, breath-holding contest. I talked to my counselor about it, and he was cool with it as long as I promised the tap his arm when I needed to come up for air.
So we made our way over to Tim and his counselor and I casually asked Tim if he wanted to see who could hold their breath longer underwater. In retrospect, I have absolutely no idea why Tim accepted this challenge, but he did.
Ready, set, go! Both of our counselors plunged us under the water to start the contest.
I kid you not, within 5 seconds I noticed Tim start to freak out underwater. His counselor must have noticed too, because he pulled him up for air right away. Whatever, fuck you Tim. I was going to stay under as long as possible just to make him feel stupid for being such a dick about holding his breath. All of a sudden, from under the water I noticed people scrambling out of the pool. There was obviously something going on, so I tapped my counselor’s arm to come up for air. When he brought me up, I was completely horrified, yet slightly amused. Tim had thrown up in the pool, and was continuing to throw up all over himself as the counselors made a huge deal out of getting him out of the water. This was all too perfect. The vomit started spreading around the pool and everyone was disgusted beyond belief. The camp officials had to cancel swimming for the rest of the day, which upset everyone.
Real smooth Tim.
This incident in the pool made me realize I was never going to get along with other people in wheelchairs, and I know it doesn’t really make sense, but I decided on that day that I prefer hanging out with people that can walk.
Luckily for me, the counselors at the camp soon realized I was slightly different from most of the other kids. We joked around and talked about things that they never would have discussed with the other campers. On the last night of camp, the counselors let me stay up all night with them, just chilling out and eating pizza while the other kids slept. For my 13-year-old mind, that was a pretty awesome experience, and it helped me learn that I had the ability and social skills to make genuine friends in a situation where they could have just been “pretend nice” to me because I was in a wheelchair.
