Laughing at My Nightmare (19 page)

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.

When I wake up in the morning, my dad pulls off the Band-Aid and pulls the feeding out of me like he’s starting a lawnmower. For a few hours I feel bloated and disgusting, but not so bad that I don’t repeat the process again and again every single night. This routine is abnormal, even by SMA/feeding tube standards. When kids need feeding tubes, they usually have a surgery to have a permanent little valve created in their stomach.

I volunteered to do the feeding tube my way for a number of reasons, not only because nasal stimulation gives me a huge boner.

The decline began back in eleventh grade when I broke my femur and had to stay in that hospital bed for a month. As you’ll remember, I couldn’t eat very well during that month, and although we tried everything from mashed potatoes to a ground up McDouble, I lost some weight during those obnoxious weeks while I was stuck in bed. I might have gained some weight back once I was recovered, but then in my senior year of high school, I got sick during Thanksgiving break and remained sick straight through until Christmas. A few days after Christmas I gave in and allowed my parents to take me to the hospital because I pretty much couldn’t breathe. I was admitted with pneumonia, but once again God/Luck/Fate/Science/Life was on my side and I got better and was released four days later. Unfortunately, I lost eight or nine more pounds during this time, taking me down to about forty-seven pounds. Not good.

When I went to my yearly checkups that spring at DuPont Hospital, my doctors were not at all happy with my weight. One of my doctors showed me a graph of my weight distributed over time, speaking to me like a child and explaining that the sudden drop off in weight was not a good thing. “What do you think we need to do about this?” she said in a patronizing voice that made me want to throw myself out of my chair.

“I don’t know, I’ll just try more to eat more I guess,” I desperately said, as I began to feel the tears welling up in my eyes; I knew what was coming next.

“I think it’s time we think about a feeding tube. You’re going to need one eventually. We need to do the surgery while you’re healthy, before it’s too late.” The condescending tone of her voice made this statement about a thousand times worse.

I never openly cried in front of other people, but it felt like my whole life was crashing down on top of me. Everything was happening too fast; I was about to graduate high school. The last thing I needed was a huge, life-changing surgery that would effectively change the way I had to live. My doctors and the interns that follow the doctors into every room stood there in silent, awkward disbelief and watched as I put my head down and let the flow of tears fall on to my lap. The thought of having a hole in my stomach and being attached to a bag of nutritional formula every night was the ultimate symbol of losing the fight against my disease, at least in my mind. I couldn’t formulate a single rational thought, all I could think was “No, I don’t need a feeding tube, not yet.”

I felt pathetic, and there was a really hot intern in the room, which made it all the more embarrassing. Almost immediately I made a decision that crying and bitching was not going to get me anywhere, and as badly as I wanted to scream and never return to that hospital ever again, I calmed myself and listened to the doctors as they explained the feeding tube procedure and what we had to do to get it scheduled before I started college.

We scheduled the surgery for the middle of the summer. Meanwhile, I tried to gain weight on my own, reasoning that if I could show my doctors that I could get fat by myself, I could delay the surgery a while longer. I found these super-caloric milkshake mixes called ScandiShakes that could only be ordered online for a very expensive price. My family and friends generously rallied behind this idea of mine and helped my parents purchase a bunch of cases. I started drinking two of these 800-calorie milkshakes a day. ScandiShakes are extremely thick and make me want to kill myself every time I finish one, but they are also pretty legit; I gained about three pounds using these shakes, but to my dismay, it was not enough weight to put off the feeding tube.

People asked me why I didn’t just eat more. I wish it were that easy. At this point, I was getting tired after only a few minutes of chewing. I had to use actual energy to chew, so when I ate, my body was burning calories faster than I could shovel it in. I began to accept that the ScandiShakes were not going to be a miracle solution, and after having some discussions with my friends and family, I came to peace with the fact that a feeding tube was in my best interest.

But I wasn’t excited about it by any means. In my mind, getting a feeding tube would greatly diminish my freedom to do what I wanted, because I would be forced to adopt some type of overnight feeding schedule when I would be hooked to the feeding machine. I also had this warped idea that I sort of looked like a normal person and that a tube sticking out of my stomach was going to turn me into someone that totally repulsed other people.

Remember that camp for kids with muscular dystrophy from when I was in the sixth grade? One of the kids in my cabin had a feeding tube, and back then, it scared the shit out of me. While we were sleeping one night, I was woken up by some of the counselors in our cabin making a fuss around this kid’s bed. I looked over, and to my horror, his stomach juices were leaking out of the feeding tube. Somehow his tube had come disconnected from the machine and now formula and stomach acid were pouring out on to the bed. I’m pretty sure I have some deep-rooted scarring from that incident.

So I had that pleasant memory to contemplate during the hour-long drive down to DuPont Hospital the day before the surgery was scheduled to take place. At this point, I just wanted to get the surgery done with so I could return to enjoying my summer. My friends and family convinced me that while it would be different, a tube sticking out of my stomach was not going to ruin my entire life.