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.
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 post has been temporarily for reasons beyond my control. I know, I’m sad too.
Hi!I absolutely love your blog. Your enthusiasm for life is awesome and reading your stories always cheers me up. You’re such a bro. Anyway, I’m sorry to bother you about this, but I was hoping you could help me with something. I have a really great friend named Sarah. She’s sixteen, and two days ago she was diagnosed with Leukemia. She and her family have been through so much already, and she’s so brave, and such a great person, and so strong. I know she’s going to get through this. Her family doesn’t have a lot of money, so someone’s set up a facebook group that donates a dime per follower. The link is http://www.facebook.com/pages/Support-Sarah-Stand-Up-to-Leukemia/162426570512537. I completely understand if you don’t post this, because I know there are so many organizations out there that need funding that might have contacted you already. But I know you have a lot of followers, so if there’s any way you could post this on your tumblr you have no idea how much I’d appreciate it.
As you may or may not know, I am officially getting a permanent feeding tube via surgery on September 13th. For those of you who don’t know the whole back-story that led up to me needing this feeding tube, read this and this first.
Anyway I met with my new pulmonologist in Delaware last week. He was a really chill and understanding dude, but I had lost 6 pounds since my last check-up last summer, bringing my weight to a whopping 46 pounds, and he and I both knew a feeding tube was really my only option at this point.
He genuinely listened to me as I explained all the scary shit that played out with the feeding tube last summer, in addition to my fears and hesitations about having the surgery. After all, a surgeon and an anesthesiologist had both sternly warned me against getting a feeding tube, because the chance of my lungs collapsing after the surgery when they try to take me off the breathing tube is a very real possibility.
So my new doctor listened as I explained all this, and then it was his turn to talk. He told me that the best indicator of how someone with SMA will handle being taken off a breathing tube is to examine the patient’s life. I am usually healthy, and haven’t been sick in a while. When I have gotten sick in the past, I have been able to get over the illnesses fairly quickly and without any lengthy hospital stays, which is pretty unheard-of for people with SMA. Also, they gave me a lung test earlier in the day to test my oxygen and CO2 levels, and I was perfect, which is also not normal for people with SMA. Basically, he said, nothing in my life indicated to him that I would have any trouble coming off the breathing tube.
He went on to explain the importance of gaining weight before my health did turn south.
I left the hospital feeling slightly defeated, because my disease was once again taking away a part of my independence, but at the same time I was also relieved that my doctor straight up told me he believed I would be fine after the surgery. At this point, I’m ready to get it over with and move on with my life.
To keep myself calm as the surgery approaches, and because this is just how I roll, I’ve been convincing myself that the surgery and breathing tube removal will both go smoothly. I’m not about to let some stupid surgery kill me after all the shit I’ve lived through, and I’m confident that I will wake up after the surgery and be ready to go home.
Although even if I do wake up as planned, I won’t get to go home that same day. In fact, my doctor admitted that I could be in the hospital for a week or more, so they can monitor the tube that’s being placed in my stomach wall and make sure shit doesn’t go haywire. Unfortunately, the surgery had to be scheduled during my third week of school, which is going to royally fuck me academically, considering my work ethic for school is nonexistent.
So I have this big, scary, annoying surgery looming in the distant future, but I’m taking life one day at a time. To be completely honest, this blog and my book have become such a huge part of my life that my outlook towards the future is extremely positive. I can’t help but thinking that my book actually has a chance to be successful, which might be extremely anxious of me, but it gives me a concrete goal to look forward to in life, and I’ve never really had that before so it’s pretty exciting.
Thanks to everyone who has been following me, whether it’s been for a while, or a few days. Keep telling your followers, family, friends, whatever, about me and the blog/book, because the more feedback/questions I can get, the better my book will be!
There’s an elephant in the room
and he’s staring at you
daring you to make your next move
He knows you’ve got nothing left to lose
What are you going to do?
My first experience with alcohol, or getting drunk I should say, is by no means exciting or dramatic, but considering the fact that I weigh as much as the average seven-year-old, the story can at least be described as interesting.
It was New Year’s Eve and I was 18 years old. My best friend and cousin, Becca, was on winter break from Pitt, and we were trying to spend as much time together as possible since we wouldn’t see each other again until after the spring semester. We decided that we were going to spend New Year’s Eve together, and attempt to get me shwasted for the first time in my life. Normally, Becca would go out and party with her other friends on New Year’s, and I would spend the night shoveling ungodly amounts of pork-fried rice into my tiny stomach with my family.
You see, my disease makes drinking, or participating in any illegal or frowned upon activity, a complicated matter. I rely on other people to take care of me, mainly my parents. So if I were going to stay out and drink, I would eventually have to call one of them to come get me, not to mention one of them would have to help me go to the bathroom and get into bed. Basically, it would be impossible to hide my drunkenness from them. Some of you might be thinking, so what, my parents know I drink and they don’t care? My parents are not your parents, and they have a justified reason to not want me drinking; it’s really unsafe.
I, however, had reached a point in my life on that New Year’s Eve where I did not really care how dangerous drinking might be for someone of my condition. It seemed silly for me to go through life constantly making cautious decisions to avoid getting in trouble or hurting my body. You only have one life to live, mind as well make the most of it.
But please don’t get the impression that I was approaching this night by throwing all caution to the wind. I firmly believed that if I acted smart and responsible about drinking, everything would be absolutely fine. There was a small voice in the back of my head saying, “Remember, you are far from indestructible, and it would be just plain stupid to throw away a great life for one night of fun.” I had no idea how much alcohol my liver could handle, and I wasn’t about to test its limits.
We decided it would probably be easiest to enact Operation Get Shane Drunk at Becca’s house, and that I would just sleep there to avoid confronting my parents while I was slizzard. The only shitty part about this plan is that sleeping over at other people’s houses is kind of not very comfortable for me. Unless my brother is with me, I usually sleep in my chair so that I don’t need to call anyone during the night to roll me from side to side. My chair is comfortable to sit in, as for sleeping… not so much. It does have a recline feature, but it is far from desired. Also, I can’t really go to the bathroom at other people’s houses, again unless my brother is there who knows how to do all that fun stuff. I wish I had considered all this before we decided to spend the night at her house.
Becca and I stopped by our grandfather’s house before we went to her house, because some of our extended family was in the area and they were having a New Year’s party. Around 10pm we said goodbye and told everyone that Becca was having a couple people over to her house, which wasn’t a complete lie; one of our other friends did join us for the festivities. As we left the party, my dad and our uncles came outside with us and reminded us to be smart about whatever we chose to do that night. I was surprised by the apparent fact that my dad was cool with me getting drunk as long as I wasn’t stupid.
An adult who shall remain anonymous bought us a box of Franzia, which might be the classiest adult beverage of all time. We weren’t trying to impress anyone.
When we got to Becca’s house, the movie 300 was on TV, so we played a game where every time we felt intimidated by a character in the movie, we took a drink. Becca had to help me tip the cup to my mouth because the awkwardly shaped wine glass did not work well in my awkwardly shaped hands. After I finished my first full glass, I didn’t feel any effects of the alcohol and we started discussing the possibility that my SMA made me some kind of super-human alcohol tank. Then I had another glass.
All of a sudden I was drunk. It was awesome. I felt so light and my muscles didn’t feel as tight as they usually do. Our other friend showed up. He and Becca continued downing glasses of the delicious Franzia, while I practiced driving in straight lines around the room, which was impossible. We laughed a lot, mostly at me, and all in all it was a great time.
However, we didn’t quite plan the whole night out as much as we should have. Around 3am, Becca and the other kid we invited were absolutely smashed. They both wandered off to different parts of the house and passed out. I realized I was now alone downstairs, not drunk enough to pass out, and with only my phone to keep me occupied. I tried to sleep, but like I said, my chair is not very comfortable. Also, when I do sleep in my chair, I am usually very close to other people that I can wake up if my head gets stuck or I become way to uncomfortable. Becca was two staircases above me and our other friend was nowhere to be found. (I later found out he had passed out in the guest bedroom, which was right next to the room I was in, so I could have gotten him if I needed to.) Anyway, at the time I felt totally alone and didn’t want to fall asleep for fear I’d wake up in pain and be unable to get someone’s help.
I literally sat there and played games on my phone until it died. That was around 4:30am. After that, I just sat there and tried to relax until somebody woke up. Not fun.
To my surprise and delight, Becca and her mom both got up around 7am. Becca came downstairs to get a drink because she was feeling really sick. I explained that I had yet to fall asleep and even though I acted like it was all good, her mom heard me talking and suggested they run me home so I could sleep. I say “they” because Becca had to drive my accessible van, and her mom had to follow us to bring Becca back home. Needless to say we were all grumpy, and in retrospect Becca probably wasn’t in the best condition to be driving me home. On the way home Becca and I started joking about the previous night. I found a video on my phone that I had forgotten about; it was just of me, sitting in my chair, with my head bobbing in all directions and a huge smile on my face. We laughed really hard.
I got home and woke up my dad, who was surprised by how early I was home. He didn’t ask questions, but I told him about my night and he laughed a little. I went to bed. My memory foam never felt so good.
Overall, that New Year’s Eve was fun, but could have been a lot better if we had planned ahead.
When I was in 11th grade, I signed up for dual-enrollment classes at the local community college. I had to take two placement tests, reading and writing, before they would let me sign up for Intro to Psychology, and I was very nervous because these were COLLEGE placement tests and I was only in 11th grade. I went to take the tests, and was awe-struck by how easy they were.
Here is a sample question from the test:
Which sentence uses a period correctly?
A. I. Like. To. Eat. Pizza…
B. I like to eat pizza.
C. Pick B
D. Seriously, B is the correct answer and you should pick it.
I finished the tests and printed out the results; I got a 100% on the writing and a 98% on the reading because the story about salmon migration patterns made me want to break the testing computer with my face.
Then, I had to take the test results to an old woman at her desk on the other side of the room so she could review my scores and tell me if I could sign up for the class I wanted. I drove over and awkwardly handed her the paper because I can’t really hand people things; I just kind of push them off my lap. She took it and said to me as if I was a toddler that had just used an adult toilet for the first time, “Ok honey let’s see how you did.”
Her face instantly changed to astonishment and she literally said, “WOW, I didn’t expect this!”
“Uhh what?” was my reply. Was she joking? The salmon I read about could have passed those tests.
Then she realized how rude she had sounded and quickly added, “We just don’t usually get scores like this! Congratulations!” Again, it felt like she was congratulating me for pooping by myself.
I know my body looks fucked up, but I honestly feel like there is no physical indication that would lead people to think I’m mentally challenged, and scenarios like the above are funny, but incredibly annoying.
If I ever get famous I am going to try to change the assumptions most people have about people in wheelchairs.