Clarity Page 5
As the door swings open, I begin to have panicked second thoughts. I try to slam the wooden panel closed, but there is already a person in the way. He walks into my cabin, and I can sense him looking around and assessing everything.
“This is a sweet little setup,” he says in surprise. “You’re very organized.”
I’m a little nervous, so I keep holding the door open, letting the cold air gust into the room. “This wasn’t a good idea,” I tell the doctor. “I changed my mind. You should go.”
“Wow,” he says softly. “You’re drop-dead gorgeous.”
I shift uncomfortably as I imagine his eyes roaming all over my body. I crinkle my nose up in a rebellious attempt to look unattractive. “Well, I wouldn’t know. I have never looked into a mirror.”
“For that reason alone, you should take my offer,” he informs me. “When you gain the ability to see, the first thing I’m going to do after the operation is present you with a mirror. You should know what you’re missing. This? What I’m looking at right now? It’s on par with your sunsets.”
“Ha. You’re some kind of smooth talker, aren’t you?” I ask with a grumble. Self-consciously, I reach up to touch my hair. The texture is bland and dry; not smooth and silky like my sister’s hair. I am sure it looks as lackluster as it feels. I really don’t take care of myself and all those superficial details quite as much as I should. “You don’t have to butter me up with fake flattery,” I assure the doctor. “Just give me the facts.”
“Could you at least shut the door and give me a minute to warm up?” he asks me. There is a sound like he is rubbing his hands together and blowing on them. “It’s colder than a banshee’s nipple ring out there.”
“Oh,” I muse to myself. “I like that phrase. I’ll have to use it in a book, sometime...”
“Helen, please? The door?”
With an exasperated sigh at his childishness, I shut the door with a dramatic flourish. “Is that better, tough guy? Does that make invading my privacy and ruining my workday a little more comfortable for you?”
“I still feel like my hands are going to fall off,” he said, blowing on them frantically. “I was trying not to complain, but I think that’s the coldest wind I’ve ever felt in my life.”
“Aww,” I say, making an exaggerated sound of sympathy. “Would you like a cup of tea to warm up?”
“Sure! That would be great,” Liam says with enthusiasm.
I point to the other end of the cabin. “The kitchen’s over there. Knock yourself out.”
He seems to pause for a moment in surprise, taken aback by my words. “You really are a lovely little lady, aren’t you?”
“What gave me away? My hospitality?” I ask sweetly. Gesturing around at the desolate location, my lips curve upward in a little grin of sarcasm. “It’s obvious that I’m a huge people-person.”
The sound of footsteps echoes in the cabin as he heads toward the small kitchen. “Good God, woman. Do you live on granola bars and protein shakes?”
“Yes,” I say slowly, “and vitamins, of course. What more do I need?”
“Where do I begin?” he says, evidently appalled by the sight of my barren kitchen. “How about a good, balanced meal with fresh vegetables and meat? How about some fruit and dairy?”
I lift my shoulders in a shrug, pretending not to care. “It’s all too complicated. The things I buy have very distant expiration dates, so they’re not likely to go bad. It’s tricky enough for me to cook and clean, but leftovers are a pain in the ass. I can never figure out what plastic containers in the fridge contain what, and how long they’ve been sitting there. It gets annoying when you need to sniff everything and do taste tests... I would rather just be secure in the fact that everything is good to eat. Also, it makes garbage disposal a lot easier.”
There is a silence, and I can feel him staring at me again. “No wonder you’re so skinny. You don’t enjoy food.”
“Hey! I love food,” I tell him with a frown. “I grew up eating delicious meals—I just can’t be bothered to prepare them for myself. It’s far too time-consuming and frustrating. I would prefer to spend my time punching away at my keyboard.”
“Hmm,” says the doctor. “I think that if you could see, your diet would improve vastly. Fruit and vegetables can be colorful and aesthetically appealing; you would experience your food a lot more.”
“Why are you so judgmental?” I ask sharply. “I have a system. It’s a good system. Look around! Everything works. I get my groceries delivered every two weeks, and I consume more than enough nutrients to keep me alive and functioning. Actually, I’m quite comfortable with this state of affairs. I write great stories that lots of people enjoy reading. I am a productive member of society.” I put my hands on my hips. “Why are you trying so hard to fix me, when I’m not broken? You act like you’re some white knight, coming in here to rescue the damsel in distress from her tower. I don’t know if you noticed, but I don’t need rescuing. I was just chilling here and enjoying a fine bottle of Cabernet Sauvignon, when you interrupted me!”
“I’m sorry,” Liam says quietly.
Truthfully, this is a bit of a sore spot for me. I really do miss having wonderful home-cooked meals. When my mother died, things became difficult for us around the house back at home. Carmen and I were both terrible cooks, and we ended up going out for dinner with our father on most nights. But since I left home, it’s been hopeless; I have been living on these bland and tasteless concoctions for the sake of efficiency. My occasional bottle of wine for celebration, or misery, is the most delicious thing I ever consume, these days. I won’t allow myself to possess anything else, for it will almost surely go bad without my notice. Most of the time, I don’t mind being so unsatisfied; I realize that culinary delights are a luxury, and I didn’t move all the way out here for the high life. I just hate being forced to remember what I’m missing.
“You can’t really enjoy living like this, Helen?” the doctor asks. “I think I’d go crazy.”
“Are you an ophthalmologist or a psychologist? Stop asking such personal questions,” I grumble. “Who cares what I eat?”
“It’s important,” he tells me. “The whole body is connected. If we manage to give you vision, you’ll still need a good diet to maintain your optical health.”
I twist my face into a scowl. “So, are you going to give me information on the procedure you want to perform on me? Or are we going to stand around making pointless small talk? Are you going to keep complaining about the weather and my diet until I go crazy and scratch out my eyes so badly that you couldn’t possibly fix them?”
He cleared his throat. “I have my documents right here in my bag. Let me read them to you.”
I listen to the rustling of papers. “Are you wearing a man-purse?” I ask him curiously.
“What? No!” He seems wounded. “It’s... like a briefcase. Why do you ask?”
“No reason. You just seem like the sort of person that would carry a man-purse,” I say with a shrug, returning to my wine bottle. I sit on the edge of my bed and take another deep swig. It occurs to me that without the few ounces I had consumed earlier, in frustration at my self-centered sister, I might not have been bold enough to open the door. Dr. Liam Larson does not seem as awful as I first expected, and I am grateful to the liquid for emboldening me. I listen closely to the sound of him shuffling through papers. I am eagerly, yet anxiously awaiting more information on his research study, but I am determined to appear cool and aloof.
“You seemed to know a little about gene therapy when I mentioned it earlier,” the doctor says. “How much of this data would you like me to go over? I don’t want to bore you.”
“Just give me everything,” I say hungrily. “I would prefer to hear as much as possible about this treatment before diving in.”
“Great,” Liam says, clearing his throat. “Well, as I’m sure you know, LCA is caused by a mutation in the RPE65 gene. This causes blindness in patients with your disease, because y
our eyes can’t produce a specific protein which allows you to use retinal, a form of vitamin A, to allow your photoreceptors to convert light into energy.”
I nod to indicate that I’m following his lecture.
The doctor continues. “The treatment targets RPE65 by delivering genes directly into the retina. This is meant to sort-of reprogram the eye so that it can function,” he explains. Liam pauses, shuffling through his papers. “I don’t want to mislead you. Unfortunately, this treatment is still in its infancy. We’re still in the middle of a trial-and-error process. Many people have experienced improved vision immediately after treatment, but some have experienced a rapid loss of the vision. It only works in the short term for some patients, while others have seen vast improvements for at least three years.”
“I understand,” I say softly. Being able to see, for even a few years, could be life-altering.
“A few years ago, researchers got really excited and thought this was like a magic cure, but it’s not quite so simple. We’re trying to improve the gene delivery technique, because it only targets a small portion of the retina at the moment. The old, damaged parts of the eye can poison the treated areas and cause them to revert back to their dysfunctional form.” He pauses for a moment, brushing his fingers across the information in his binder. He clears his throat. “The reason I hunted you down is because I looked through some of your tests from when you were younger. There are different types of LCA, but your specific genetic mutation looks like it might respond well to our therapy.”
Nodding thoughtfully, I run my finger around the rim of my wine bottle. I know that my disease is rather rare, and there are probably a limited number of potential candidates in my age group. It would make sense that he would choose me based on a recommendation. This allows me to grow a little less upset at his intrusion, and a little less suspicious; only a little.
“Helen, you should accept my offer,” he tells me seriously. “I really do believe that these clinical trials are going to yield the best results we’ve ever seen. We’re trying a different, dual approach this time to try to cause more complete healing of the entire eye.”
“And what would you need from me?” I ask him.
“Well, we’ll need to closely monitor the thickness of the outer nuclear layer of your photoreceptors. This means we’ll be using coherence tomography to take serial measurements, quite often. A thinning of this layer indicates degeneration of the rods and cones, which we’re trying to prevent.” He exhales, and there is a sound like the closing of a binder. “Basically, the main issue we’re facing is determining how to create a permanent, safe, and thorough solution. You should do this, Helen. If you agree to participate in these clinical trials... it could be amazing for you.”
“Why me?” I asked him. “Why are you bothering to try and convince me? Aren’t there others, closer to your hospital?”
“Well, as I told you, I’m friends with Dr. Leslie Howard. You’re one of her favorite patients, and she actually gave me your book a while ago. When this study came up, I mentioned it to her, and she became insanely excited and began pushing me to find you and convince you to participate.”
“Ah,” I murmur. This does make sense. I had always gotten along quite well with Leslie. She was an old family friend, and I had even kept in touch with her sporadically after leaving home. Taking another sip of my wine, I quietly mull over this information.
The doctor clears his throat. “Can I make a confession?” Liam asks nervously.
“Sure,” I tell him with a shrug.
“Meeting you... is wild. I feel like I’m in the presence of a celebrity.”
Smiling a little, I scoff. “Don’t be silly. Because of my books?”
“Yes. You’re a little different than I imagined, but I did expect you to love your wine.” The doctor laughs lightly. “Why are all writers such heavy drinkers?”
“I don’t know. Why are all doctors such nosy pricks?” I retort with a growl.
He chuckles at this, and does not seem to be offended. “Did you know that you’re really popular in the blind community? I always tell my patients about you to inspire them. There was a fascinating feature a few months ago...”
“I know, I know. That dumb magazine article on the top ten most successful and influential blind people of 2013. That was just a publicity stunt by my publisher. It’s marketing. They’re capitalizing on my disability to sell books. Don’t believe everything you read.”
“You’re right,” he says. “I shouldn’t believe anything without hard evidence. Journalists often get it wrong. And so do photographers; you’re much, much prettier than the picture in the back of your book.”
I raise my eyebrow. “At this point, I almost want to agree to your study just so you’ll stop talking. Calling me pretty isn’t going to further your case. Also, I don’t really care if I’m pretty; what does that even mean? I have no concept of what an attractive person looks like, versus an unattractive one.” I growl a little. “Are you taunting me? Trying to flaunt that you can see what I look like while I have no earthly idea? Or are you lying to manipulate me, because I’m actually hideous, and I have no way of knowing that?”
“I was just paying you a compliment,” he says defensively. “Obviously, it’s a subjective matter, but personally, I find you stunning.”
“Yay,” I say in a monotonous tone. I take a sip from my bottle again. “Well, I think I have an answer for you. On whether I’ll participate in your study...”
“Wait!” he says quickly. “Don’t you want to know more so you can make an informed decision?”
“You gave me plenty of information...”
“Just take a moment to really think about it,” he tells me. “I don’t want you to miss out on this because you’re being hasty and prideful. There might not be another study like this in the near future. And it’s rare to find one in your age group...” Liam sounds like he’s getting flustered.
“I’ll do it,” I tell him.
The doctor continues to panic. “Think about what this could—wait, what? You’ll do it?”
“Yeah. But you’ll have to do something for me in return, like you promised earlier.” I take another sip slowly. “I need a ride somewhere.”
“A ride? Sure, that’s easy. Is that all?”
“I need a ride to New York,” I inform him. “Tonight”
“New York?” he says in surprise. “Well—we were going to head back there anyway. But Dr. Philips and I have a room booked here for the weekend, and he’s meeting family...”
“Tonight,” I repeat, unwaveringly. “It’s for my sister’s wedding. I need to be there as soon as possible. If we could leave now, that would be best.”
“But it’s at least a six hour trip,” he says weakly. “We’ve already been driving so much today. I’m exhausted...”
“There must be some reason you want me, specifically, for your study,” I inform him. I’m bluffing a little, and overestimating my own importance. I’m also gambling on the fact that the doctor seems like a really nice guy. “If you take me to New York, I’ll be your guinea pig. You can poke around at my eyes all you want.”
He takes a moment to ponder my offer. He sighs. “Could I have some of that wine?”
“Oh. I’ve been drinking from the bottle...”
“That’s fine,” he says, crossing the room toward me and taking the bottle from my hands. He is not standing too close to me, but I can still feel his breath against my face. A subtle whiff of his cologne invades my senses.
I flinch and scoot away on my bed, pressing my back against the wall. My heart rate quickens, and I am suddenly very afraid. He seems nice, but one can never be too sure. My chest feels suddenly very full of a breath that I have been holding. I can hear gulping noises from his throat as he swallows a generous helping of my wine.
“Okay,” he says finally, placing the wine bottle down on the desk. “I’ll take you to New York. Let me just text Dr. Philips, and we’ll
get going.”
I release my breath in relief. I am glad he did not notice my momentary anxiety attack. “Great,” I say in a confident voice. “You’re also going to help me pack.”
Chapter Four