Chapter 2:
Four o'clock strikes, and Molly enters promptly to help me set up my AffloVest. Unfortunately, it's a very familiar friend, and a necessary evil. Imagine being hugged tighter than is humanly possible, and then the person starts violently shaking up and down; that's what wearing the vest is like. The goal is to break up the mucus in the lungs and allow it to be expelled, and it does accomplish this goal, although the experience is anything but pleasant. An AffloVest treatment with fewer than five violent coughing fits is an inefficient one.
As she sets me up, I can't help but ask her about the boy from the NICU, Sherlock. I already know he's a fellow CFer, but there must be more to the story than that. "What's his deal?" I inquire.
"Sherlock? He's here for a drug trial for B. cepacia," Molly explains. Despite my initial hatred of the boy, my heart sinks at hearing this news. Burkholderia cepacia is a death sentence for a kid with cystic fibrosis. Contracting it ensures that one is ripped off the lung transplant list, and years are ripped off one's lifespan. Once B cepacia is in the system, everything pretty much becomes extended palliative care.
"That sucks," I remark. "You said he's here for a drug trial? The drug any good?"
"We don't know. But we hope so."
Of course. That's the go-to response for doctors and nurses when they're grasping at straws. 'We hope so' pretty much means that science has been almost entirely abandoned in favor of blind faith. Don't get me wrong, I've relied on blind faith plenty of times, but blind faith doesn't cure diseases. Blind faith won't save Sherlock Holmes. Why do I even care? I've hated the guy since the moment I saw him, and I really couldn't care less if he dies. But, Sherlock's death would be another victory for cystic fibrosis. And I'm always rooting against that.
Molly leaves me alone while the AffloVest hums away. I try to read a book, pausing occasionally to hack up a pile of thick mucus, when my laptop starts to buzz: a Skype call from my father. I answer it and am greeted with his smiling face. I checked myself into hospital this time, and I haven't seen him in a week or so. My parents are divorced, and I live with my mother, so time with Dad is a rare treat.
"How are you doing?" he asks.
"Already better," I tell him, pausing to cough again. Though the amount of mucus is rather disgusting, the sight of it makes me glad; every ounce out is another ounce I don't have to try and breathe around. "Fever's gone down a bit, and the sore throat is already on the mend."
"That's great. Your mother and I are trying to coordinate a visit in the next couple of days." Great. I'd prefer it if they came separately, because they always argue when they're together. But I guess they want to make sure they present a 'united front' to the medical staff in charge of keeping me alive.
"Okay. If you can't figure something out, that's alright too," I assure him. "Greg's here, so it's not like I'm starved for company."
"Are you sure?"
"Of course."
"Okay, I'll leave you be. See you soon."
"See you soon," I say before hanging up. I glance at the clock and hope it's nearing the end of the vest treatment time. I'm supposed to wear it half an hour each day, and for the most part I'm pretty good about it. I only take it off early occasionally, when the coughing is particularly nasty and I feel like one more might actually force my trachea inside out. This time, I keep it on the whole time, and am rewarded with significantly easier breathing. However, as I'm taking it off, I notice a painful sensation around my G-tube. A quick glance at the red and inflamed skin proves an infection is beginning. Almost robotically, I grab the antibiotic cream off the med cart in the corner of the room and apply it. Hopefully, this will take care of it before it worsens. If not… I don't bother to think about it.
I replace the cream on the med cart and recheck that everything else is in order. Whenever I come here, I'm positively anal about the organization of this cart. It's one of the few aspects of my life that cystic fibrosis doesn't wrest control of. After I finished checking it over, I return to the book and manage to read up until dinner time. Martha brings in my tray and tells me Greg is expecting to talk to me while we eat.
"Sounds good," I say as she sets the tray before me. As I mentioned, nutrition is rather difficult for CF kids, so my almost every meal is couple with a milkshake or something equally as calorie-dense. My finished app alerts me to take dinnertime meds with a dancing pill bottle, and I set them out on the tray alongside the food. Just as Martha departs, my laptop buzzes with an incoming call from Greg. I answer and see him on the screen boasting a tray almost identical to mine.
"Hey John," he greets.
"Hey Greg. How are you?" I ask.
"Well, I'm here, so not so great in the grand scheme of things. But as far as kids in hospital go, I think I'm doing alright."
"Well said."
"Thank you. How about you? Aren't you missing your big trip for this?"
"Yeah, I am supposed to be in Switzerland with my mates, but my lungs had other plans."
"As they often do."
"Yes, my lungs are rather busy."
"I think they should replace the expression 'busy as a bee' with 'busy as a CFer's lungs.'"
I chuckle, "Not sure that would fly with the rest of the world. I'll be you can get the nurses to start using it, though."
"Is that a challenge?" Greg taunts.
"Maybe it is. You might have just made yourself a trend-setter."
"Maybe. Anyways, how's your food tonight?"
"Better than usual."
"They'd better make it good if they expect us to eat it. Surviving solely off that G-tube mush is simply not an option."
"For some people it is. Imagine if you had no teeth."
"I'd throw everything in a blender and suck it down through a straw. My lungs might be shit, but no way would I ever let my taste buds atrophy."
"Fair enough."
We take a couple minutes just to eat, periodically glancing up just to make sure we're both still on the screen. I've accidentally hung up on him I-don't-know-how-many times, and it always pisses him off. Suddenly, I hear two alarms at once: one coming through the laptop's speaker, and another blaring from down the hallway.
"Greg!" I shout, hurling myself out of bed. I barely have time to drag on a face mask before I'm out the door and down the hallway. Doctors and nurses dash in his direction, rushing to fix whatever it is that's broken this time. He'd been talking and laughing just minutes ago, how could his lungs just quit now? It didn't seem possible.
I've barely made it two steps down the hallway when the alarm is silenced. I hear the cry of, "false alarm," and breathe a sigh of relief. This wouldn't be the first time Greg has accidentally pulled some monitoring wire off and initiated an alarm. Regardless, I thanked the staff for their quick response as they returned to their posts. I return to my room and the laptop which still sits on my bed.
"Greg, mate, you have got to stop doing that," I urge. "Forget about my lungs, my heart's going to give out with another scare like that."
"I'm sorry," he defends. "I swear it was an accident."
"I know, but you could be more careful."
"Not everyone can be Mr. Perfect," he teases. "Maybe the engineers could design this stuff better so it's not so easy to fall off or tangle."
"Take it up with the engineers, then. I'm sure they'll be glad to hear you complain."
"Hey, the people who design this stuff usually don't have to use it."
"Which is why they need input from the people who do. Maybe you should ask Molly to grab some of the tape they use in the NICU so the babies don't pull off their leads."
"Are you calling me a baby?"
"No," I say sarcastically. Greg is a lot of things, but mature for his age is not one of them.
~0~
This evening, I discover John Hamish Watson. The guy's been keeping a blog about his life with cystic fibrosis since he could spell. I spend hours scouring the blog, reading every single entry until my eyes are as shot as my lungs. I read all night long, foregoing sleep in favor of learning more about my hallmate. Surprisingly, the blog has thousands upon thousands of followers. Apparently this guy John is popular. I never would have guessed, since my first impression was that he's a stuck-up goody two-shoes with the nursing staff wrapped around his little finger.
The more I read, the more I discover I was wrong about him. He's been through a lot, just as much as I have, if not more, in the course of his treatment. I read about surgeries, hospital visits, infections, and see myself in everything John has written about. Although there's one crucial difference: John actually wants to get better. Everything he does is to preserve his health long enough for him to get new lungs. I, on the other hand, stopped trying long before I even got the B. cepacia. For me, I just don't see the point. Even if I was still eligible for a lung transplant, they'd last five years before my body started to muck them up just like it had with this pair, and then I'd be back to square one. I'd much rather life my life to the fullest now and have it cut short than drag out this half life.
But Mycroft isn't giving me much of a choice. Not that he ever gave me much of a choice in anything. After our mother and father died in a car accident, he assumed control of me and all my medical decisions at age nineteen. Most would say that's too young to be put in charge of a minor with a serious illness, but Mycroft was practically born an adult. I often call him a Benjamin Button, which irritates him to no end, but that only encourages me to do it more often. Irritating him is one thing he can't force me to stop.
That morning, Mycroft and Dr. Mortimer both appear in my room to discuss the drug trial. It's called Cevoflomalin, as if it matters. It's just another medication that isn't going to work. For the most part, they talk to each other, and I pretend to listen.
"This drug has only been on trial in humans for eighteen months," Dr. Mortimer explains, "So we can't be sure how Sherlock or the B. cepacia will react to it, but we're hoping it'll work along with his regular regimen."
"Sherlock, are you even listening?" Mycroft asks. Of course, he can see right through me when I'm tuned out. Fooling him is a much different battle than fooling the doctors or the nurses.
"Unfortunately, I am. And what I'm hearing is that this drug is literally a shot in the dark. You might as well mix up a draught of paint thinner and hydrochloric acid, string it up in an IV, and hope for the best. Sounds about as effective as whatever you've currently got."
Mycroft fixes me with his best disappointment stare, and I stick my tongue out at him. He shakes his head sadly, which I ignore. Pretty much every emotion he ever displays except for apathy is an act. The day I see Mycroft show genuine emotion is the day I sprint a hundred meters without gasping for breath.
He apologizes to Dr. Mortimer on my behalf, and she shows herself out. I stare Mycroft down until he, too, leaves me alone. For a while, I stare at the ceiling of the hospital room, wishing I was anywhere else. Then I realize I could make that wish a reality. Foregoing a face mask, I slip out of my room and down the hallway. I haven't spent all that much time in this particular hospital, but I've been in enough to be able to find my way around without difficulty. All hospitals use the same algorithms in their arrangement. After I deciphered that pattern, learning the layout became second nature.
I easily find my way to the staircase that will bring me to the roof. It's the sterile, stagnant hospital air that's driving me crazy. I just need to breathe some real air, and I might be able to handle the next few days without lashing out too severely at Mycroft and Dr. Mortimer. However, I first must get through the door without triggering the alarm. People aren't supposed to be on the roof, so their doors come equipped with an alarm that will go off if the door is opened. Unless the opener knows the trick. As I open the door, I wedge paper money onto the trigger mechanism, preventing it from recognizing that the door has been opened. To ensure the door doesn't lock behind me, I leave my wallet tucked into the door jamb. Mycroft would shudder at using something so expensive so haphazardly, but I really don't care. He bought me the wallet for my sixteenth birthday, expecting I'd mature with the possession of such a prestigious item, but I'm afraid I disappointed him on that front.
From this area of the roof, I can see the exterior wall of part of the hospital. By running over the map of the hospital in my head, I figure I'm actually looking at the very ward I came from. This conclusion is reinforced when I catch sight of John looking out his window up at the roof. I know he sees me, because his eyes light up with disbelief, followed quickly by anger. I don't understand why he's always angry with me, it's not like I'm harming him in any way. I give him an exaggerated wave, and he rolls his eyes.
I turn away from him and focus on what I came here to do. Taking a deep breath, I inhale all the scents of the outdoors, letting the new air replace the stench of hospital. I've been on the roof of almost every hospital I've ever been in, which is a lot. The insides are all the same, with stark white walls, fluorescent lighting, uncomfortable sheets, and overbearing nurses. But the outsides, the outsides are where I can actually drink in the city. Some people say that passing through the airport of a city doesn't count as visiting; I say that being in a hospital in a city doesn't count as visiting. Mycroft will never let me do actual tourist things, so this is the closet I'll ever get to sightseeing.
I take a step closer to the edge for a better view of the skyline. I wish I could stay up here until I turn eighteen, when I can finally tell Mycroft to go screw himself and leave me alone, but I know my absence will be noticed before that can happen. Even the idiotic personnel here could eventually find my trail and discover my whereabouts.
An all-too-familiar sensation starts building in my chest. Suddenly, my breath hitches, and I'm gasping for air, unable to draw in oxygen through my worthless lungs. I feebly start coughing, attempting to dislodge something to allow more air inside, but to no avail. My vision starts to blacken around the periphery, and only then do I realize just how close to the edge of the roof I am.
