Laughing at My Nightmare Read online

  We stopped speaking after I ended it. Maybe it’s fucked up that I’m saying all this in my book, but Jill really did change my life. She helped me defeat the false idea—having a girlfriend was impossible—I had held on to so tightly.. She taught me that there are people out there who really will see past the wheelchair and want to be with me despite the difficulties of dating someone with SMA. I can never thank her enough for our time together and everything I took away from it.

  chapter 31

  physical therapy (read: torture)

  Since physical therapy can help slow the effects of muscle atrophy, I’ve been getting physical therapy on a regular basis since I was a baby. The concept of how it helps me isn’t something I’ve ever really thought about or tried to explain to someone; it’s just a part of my life. I realize that it might be slightly confusing to understand, so before I start with the funny stories, I’ll try to explain how physical therapy works for me.

  A long time ago, when I was in early elementary school, my wrists looked completely normal. They were straight and I could bend them in all the normal directions. Now, I can’t straighten them much past the ninety-degree angle that they’re fixed at in the picture above, and if someone helps me extend them, they still only straighten to about a hundred and ten degrees.

  Observe.

  In physical therapy, my therapist stretches out all of my muscles so that the atrophying process progresses at a slower rate than if I didn’t receive physical therapy. Think about it, when you sit in one position for a long period of time and then stand up, your leg muscles feel a little sore, right? The muscles in my body remain in relatively the same position all day every day, which is why they atrophy. My disease causes my muscles to deteriorate and weaken, and since I never move, they get stuck in the position that they’re in all day. Physical therapy serves the same purpose as standing up after you’ve been sitting for a long time; it stretches my muscles out.

  For people with SMA, physical therapy consists of prolonged stretches of all the limbs. My therapist will push my wrists, or my knees, or my ankles, as far in the correct position as possible and hold it there for several minutes. The simple truth is that I’m sitting in my wheelchair a hell of a lot more of the time than I spend at physical therapy, so by a matter of the demands of daily life my muscles get more atrophied over time. This means that, today, my physical therapist can push my wrist to a hundred and ten degrees, but my muscles stop straightening at a certain point and go no further unless they tear, strain, or sprain. It’s kind of a losing battle when you think about it, but after I spend an hour in physical therapy I feel substantially looser, which is a great feeling. Also, imagine how fast my muscles would atrophy if I didn’t receive physical therapy on a regular basis, so there are definitely some benefits as well.

  From my toddler years until about a third or fourth grade, I received physical therapy from a woman who my family knew who had a private physical therapy practice out of her home. She basically only treated kids with some type of disability, so she really knew what she was doing despite the fact that therapy took place on her living room floor. Around that time I also used a device we called The Stander that simulated standing. It was hell.

  I absolutely hated physical therapy in the worst way during these years of my life. The shitty part about stretching out an atrophied muscle is that it hurts, and like I said before, if you stretch it too far, there can be serious physical injuries that result.

  Take the fucking picture so I can lie down.

  However, I was also kind of a baby when it came to pain back in those days. Growing up, I was shielded from pain by my wheelchair and the fact that I didn’t do much physical stuff that could put me in danger of getting hurt, so I didn’t learn how to tolerate pain as fast as normal kids do. Although my naïve brain exaggerated the pain, it still hurt, and I wasn’t old enough to appreciate that my physical therapist was actually doing a world of good for my body by stretching it out. I only received therapy once a week back then, but whenever that day rolled around, I would get all panicky and try to find ways to get out of having to go. Sometimes I would wait until my mom said it was time to go, and then I would pretend like I really needed to use the bathroom all of a sudden to waste a few minutes.

  During those early therapy days, I developed a hypersensitivity to pain. I would anticipate a stretch hurting before my therapist had even started the stretch, and I would inevitably start yelling, “OW, OW, OW, OW!” The problem then became that my therapist didn’t know when I was anticipating pain or actually feeling pain, and because of this I experienced some of my first muscle sprains during this time.

  I want to try for one second to convey how terrifying it is to have absolutely no power over the muscles in my body while they’re being stretched. If you were at physical therapy, and you felt like a stretch was going too far, you could easily tighten your muscle, stopping the stretch and avoiding the pain. I can’t do that. I have to rely on verbal communication and trust that my physical therapist will listen to me when I say that a stretch is going too far and that I’m about to get hurt, but sometimes verbal communication just isn’t enough.

  When I was in middle school, I started receiving physical therapy at a rehab facility that is associated with the main hospital in my town. They have a whole pediatric division of the facility, where they mostly treat kids with disabilities. For my first few years at this facility, the same guy treated me each week, and to this day he is my least favorite physical therapist of all time.

  This guy, we’ll call him Brett, was in my opinion the absolute worst kind of physical therapist, which is kind of ironic because the stories he told indicated that he was a big shot in the world of physical therapy; although, I later found out that many people believed that Brett was a compulsive liar. He was the kind of guy who would complain about having to fly down to his beach house for a weekend to meet the maintenance man. Anyway, Brett gave less than half a shit about the opinions of his patients. He was a middle-aged man who acted like he’d been sent to Earth by God himself to perform physical therapy on the less fortunate. He may have been a great physical therapist for most other people, but he just refused to understand that my muscles could not withstand the same amount of pressure as everybody else’s. I think it was his secret goal to completely straighten all of my muscles, even though that was physically impossible by the time I started seeing him.

  There is one incident that took place as a result of Brett’s power-complex that sticks out in my mind as the worst physical therapy experience I’ve ever had. I was probably fourteen or fifteen years old and it was an evaluation night, which was something the physical therapists did four times a year for each patient to measure if any progress was being made. First of all, this system makes no sense for someone with a disease that gets progressively worse; I’m obviously never going to make progress, but that’s beside the point. During an evaluation, Brett had to use a protractor-type device to measure the maximum angle that all my muscles could be stretched to. Brett fucking loved evaluations; I lost sleep worrying about them whenever one was approaching.

  My knees have always been the most severely affected part of my body, since they move the least on a day-to-day basis. So in the typical “do exactly opposite of what Shane wants” Brett fashion, he stretched my knees the most aggressively of all my other muscles. I will give him this much credit, most of the time when Brett was stretching my knees and I began to wince, he would back off so I didn’t get hurt. By the age of fourteen, I had developed a much higher pain tolerance and didn’t cry wolf every time I thought a stretch was going to hurt. However, I always felt like Brett kind of doubted if I was ever in real pain when I yelped during a stretch, and I only yelped when I felt legitimate pain, so you can understand my constant underlying distrust of him.

  On this particular evaluation night, Brett boasted that we were going to set a record for my knees by performing a prolonged, gentle stretch, as opposed to a short, aggressive on
e. I felt sick at the thought of straightening my knee more than it has ever been straightened, but slow, long stretches were usually less painful, so I didn’t argue with him. My hands started to sweat buckets as he began to stretch my left knee. As the minutes ticked by, I lay on the therapy table and concentrated on trying to relax my muscles, which is pretty much physically impossible, but something I like to mentally tell myself I’m doing to stop a stretch from hurting. I remember looking out the tiny window in the corner of the small room we were in and noticing that it was considerably dark for 5 p.m. It was winter, and I remember having a brief thought that it might snow and that school would be canceled. I forgot what was going on for a split second at the thought of a snow day. Then he started to stretch my knee too far.

  I could feel my muscle reaching its maximum stretching point, the point where I know if the therapist continues to stretch it any further, something is going to give and I’m going to get hurt.

  “Oh God! Okay, no further, no further. It hurts!” I said in a hurried voice to get him to stop.

  “Just a little longer, we’re almost there,” replied Brett nonchalantly, as he continued to push down on my knee.

  These were the exact words I didn’t want to hear him say because I knew no matter what I said there was no stopping him from going further. He pushed even harder on my knee and I began to quietly whimper, “Oh God, oh God, oh God!” I hated him so much.

  “NO SERIOUSLY, IT REALLY HURTS! PLEASE STOP!” I yelled.

  Then it happened. A bolt of lightning exploded in my hamstring and shot all the way up my leg and throughout the rest of my body. Almost as if in slow motion, I could feel the fibers in my hamstring pulling apart from each other. They made a sound like sandpaper on wood that I could hear and feel on the inside of my body. The most intense burning pain I’ve ever felt flooded my entire knee, and I screamed at the same time that my knee muscles gave way and straightened further than they had ever straightened in my life. Brett obviously was terrified by this and let go of my leg immediately; he had not intended for my leg to straighten this far. He frantically started apologizing, but by that point the pain was so unbearable that my uncontrollable sobbing and my dad’s efforts to put my leg back to its natural position forced Brett into the background. I was a complete mess.

  Probably a half-hour later, with two people stabilizing my leg, my dad was able to lift me back into my chair so we could go home. It is a good thing that Brett didn’t try to talk to me before I left, because I would have ruined the rest of his life in a matter of a few sentences, my anger towards him was worse than the pain.

  My knee didn’t heal for several months, probably because I refused to go to the hospital, arguing that it was only sprained, when in reality Brett had probably either partially or completely torn my hamstring. It was close to a year before I could stretch that leg without any pain. Brett found a new job in a different state several weeks after the incident, which was most likely just a coincidence, but I like to think he quit because of me.

  Now that I think about it, most of the stories I have are about me getting hurt in physical therapy. Maybe someone needs to reevaluate the effectiveness and dangers of stretching kids with SMA.

  Another time, I was receiving physical therapy in high school, through our school district’s physical therapy program. It was 7:30 in the morning, and I was being stretched before school started on a table in the back of the nurse’s office at my high school. When therapy was over my therapist had to lift me off the table and put me back in my chair, however, in a way that I still don’t understand, my left arm got caught on my therapist’s shirt and twisted in an odd direction while he was spinning me into the correct position to get in my wheelchair. All of a sudden, incredible pain filled my upper left arm, absolutely incredible. It kind of caught me off guard and I yelled a bunch of non-intelligible words along the lines of, “Holyshitthathurtsstophelpohmygodowowowow.”

  My therapist put me back in my wheelchair and although I was almost hyperventilating from the pain, the severity of the situation didn’t set in until I tried and failed to move my left arm. Nothing. Here’s the funny part: I once again convinced everyone that it was only sprained, out of my pure desire to stay as far away from hospitals as possible, and I suffered through close to two months of torturous pain every time I had to allow my parents to move my arm to change my shirt each day.

  A few months later, once my arm was feeling better, I went down to duPont Hospital in Delaware for a checkup with my doctors. One of them wanted me to have an x-ray on my ribs to check out my lungs, and while he was examining my X-ray he noticed that I had fractured my left arm and that it had healed on its own. Whoops!

  chapter 32

  whip my dick out

  When you rely on other people to help you do mostly everything, there are inevitably going to be some embarrassing situations that arise.

  In the summer of my sophomore year of college, I woke up and went to Becca’s house to chill for the afternoon, while my brother went swimming at his friend’s house. Becca and I sat outside all afternoon getting tan, and I drank a can of Pepsi when it started to get unbearably hot. Around three in the afternoon I realized I wasn’t going to be able to stay at Becca’s house much longer because I really needed to pee. The cup of coffee I had when I woke up, combined with the can of Pepsi, was finding it’s way to the end of my bladder.

  Going to the bathroom is a relatively complicated process for me. When I only need to pee, I have this super-fancy, red urinal bottle that I pee into. I call it my pee jar. This is how it used to work: someone gets me out of my chair, lays me down on a flat surface on my back, I whip my dick out, and relieve myself in the pee jar. Unfortunately, in the past couple of years, I’ve lost arm strength and range of motion so the process has changed slightly and involves the person helping me having to “steer me in the right direction” using the opening of the jar.

  My brother met me at Becca’s house on his way home from swimming and we started walking back to our house so I could pee. However, we decided to stop at Arby’s on the way because my intense urge for loaded potato bites outweighed my need to urinate. I stupidly drank a Dr. Pepper with my potato bites. I was so healthy.

  We arrived at our house and I wheelchair-sprinted into my bedroom, yelling at Andrew to hurry. A few years earlier, Andrew and I got over the awkwardness barrier of him helping me pee. We found a method where he doesn’t have to look at or touch anything, and having someone else, besides my parents, be able to help me go to the bathroom gave me a lot more freedom. To streamline the process, Andrew and I came up with a group of words we used to instruct each other when he helped me pee.

  Usually, the person helping me keeps a hand on the handle of the pee jar while I pee to ensure that nothing crazy happens and I don’t pee all over the bed. Today, Andrew got me all lined up and walked away to change the song that was playing on his laptop in the other room.

  We have too much fun taking me to the bathroom.

  “Uhh, dude, hold this?”

  “You’ll be fine, just go.”

  “I don’t want the jar to tip. Just hold it!”

  “You’ll be fine.”

  So I peed. A lot. It was one of those glorious moments when everything important in life faded into nothing and all of my existence became focused on the amazing feeling of my bladder shrinking.

  Suddenly, the jar became too full, and just as I had expected, started to tip.

  “Dude, it’s tipping!”

  “What?”

  “THE JAR IS TIPPING! COME HERE!”

  But it was too late. The opening of the jar had passed the point of no return and a disgusting amount of warm piss was running down my … ermmm … thigh, forming a steamy puddle beneath my hips. My brother ran in and immediately doubled over from laughter. I began laughing too, pretty much uncontrollably. I was lying in a puddle of my own urine.

  Then it got gross, and while we continued to laugh uncontrollably I had to quickly
tell him to go get towels to start cleaning everything up. I obviously had to change my boxers and shorts, but somehow my shirt got wet too.

  I also ruined my memory-foam mattress. Fuck.

  A Conversation with Mom

  Mom: Shane, you need to remember to watch what you say on your blog.

  Me: Uh, what?

  Mom: Like, your wiener words.

  chapter 33

  feeding tube drama

  Before writing this chapter, I asked my dad to weigh me. To do this, he picks me up like a sack of potatoes and stands on the scale with me in his arms. It’s kind of romantic. Once he has that weight, he puts me back in my chair and weighs himself alone. I make fun of him for being fat, and then he does some kind of weird calculus equation using the two weights to figure out how much I weigh. Science is pretty neat, huh?

  Seven minutes before writing this chapter, on August 14, 2013, I, Shane Robert Burcaw, weigh a whopping sixty-five pounds. Believe it or not, I’m actually excited that I have gained a few pounds since the last time I was weighed. My weight has been somewhat of a roller coaster over the past few years, the kind of roller coaster where you get really close to almost dying because you don’t weigh enough.

  At my lowest, I weighed forty-six pounds. A doctor told me I was going to die if I didn’t get a feeding tube to gain some weight, and a several-year journey to accomplish that began.

  Today, before I go to bed every night my dad sticks a long, yellow, rubbery feeding tube up my nostril. I swallow and occasionally gag until it goes down into my stomach. We secure the end that’s left sticking out of my face to my cheek with a Band-Aid and attach it to a feeding tube pump, which blasts pure calories into my stomach while I sleep.

  Whenever my dad and I get into a fake argument, he always whips out the “Well, have fun getting into bed tonight,” and I feel like that’s kinda cheating.