Clarity
Chapter One
Three years later...
Something does not sound right.
My fingers pause, hovering above the keyboard of my braille typewriter. There is a suspicious vibration in the air this morning, like the incessant whirr of electricity. People always used to be surprised when I asked them to turn off the lights, considering that I am incapable of seeing even the faintest glow—but for me, it was deafening. The city was full of noisy lights that were powerless to brighten my shadow-soaked world, constantly teasing me with their insect-like buzzing. One of the main reasons I moved out here was for the peace and quiet; but at this moment, it is neither peaceful nor quiet. That bugs me.
I hear the sound of footsteps crunching in the snow, almost a mile away.
Footsteps are not uncommon around here, but they do not usually belong to people. I prefer it that way; I have surrounded myself with acres of harmless, innocent forest, so that my only neighbors are squirrels and birds. They are far more polite than human neighbors, and never dare to bother me—not even to borrow condiments. The trees, of course, have no voices. Unlike in Narnia, they don’t whisper my secrets to each other, and mock me when my back is turned. They have been kind, loyal friends—quite dissimilar to most of the people I have known. Anyone who has had the good fortune of spending time with the infinite silence of the trees, will acknowledge their wisdom.
Two distinct voices are approaching my residence.
This is strange and unsettling; there is a flutter of fear in my gut. The only voices that ever come all the way out here belong to the mailman, or occasionally, the repairman from town. I am not expecting any visitors. When I hid myself away in the wilderness all those years ago, I changed my name and did not tell my family or friends my address. I knew they would have come looking for me, not believing that I could manage on my own. They would have continued coddling me, and fussing over me like I was an invalid, and ultimately driven me insane. I have been happy with my solitude. I thought I had escaped the world of prying, controlling, and frustrating people, but these two voices sound self-important and righteous. They sound like the types to callously invade my serenity and toss my life back into chaos.
I am simply not in the mood for this. Pushing my typewriter aside, I rise to my feet and begin pacing in my small cabin. On the carpet, my own light footsteps are soundless and catlike. However, my ears are filled with the cacophony of men’s boots smashing the thin layer of ice above the snow, again and again, in an offensive rhythm. I wish they would turn away and go back to their own homes! I wish they would magically turn into tiny chipmunks, scurrying along on their business. I like chipmunks. From what I understand, they are quite adorable. As the male voices approach, I can begin to make out their words—they already sound rude and detestable, and not nearly as charming as chattering chipmunks.
“I swear, Liam. If you made me come all the way out into the godforsaken boonies for nothing, I’m going to be pissed. I could have been relaxing at home with my girl this weekend.”
“Come on, Owen! You wanted a special candidate, and she’s the one. I’m sure of it.”
“But what if she doesn’t agree to join the study?” asked the one called Owen.
“Why wouldn’t she agree?” countered the man called Liam. “There are virtually zero health risks! Almost every blind person we’ve approached has been excited at the idea of being able to see again. There were a few hold-outs... but they were nutcases.”
“Yeah, some of these patients with LCA can be real wackos,” Owen said. “Being blind messes with their heads. Just don’t get your hopes up.”
My eyebrows knit together in a deep frown as I eavesdrop on this conversation. Doctors. Why did it have to be doctors? Could it not have been Jehovah’s Witnesses or bible salesmen coming to knock on my door instead? Could it not have been girl scouts peddling cookies, or some disaster relief fund requesting donations? Anyone but doctors! Are there any people on the planet as two-faced as doctors? They pretend to care about you, acting sweet and condescending, and as soon as your back is turned, they reveal that they are only self-interested. I haven’t had such a scowl on my face in a long time, and my muscles are already beginning to hurt. How did they find me? My name no longer matches the one on my records. LCA, or Leber’s congenital amaurosis, is the disease I was born with, and it bothers me that these nosy physicians know about me and my medical history.
A knock finally sounds at the door. “Hello! I’m looking for Helen. Miss Helen Winters?”
I am furious. That is not my name anymore. I consider remaining quiet and pretending that I am not home, but they could come back later. It might be better to send them away with a definitive negative response to whatever offensive query they have for me. They probably just want to poke around inside my eyes and use me as a guinea pig. My father worked for pharmaceutical companies for years, and I know all about the unpleasant nature of such experiments. I knew a few kids with my disease when I was younger. Many of their parents put them through dozens of stressful surgeries and failed research trials, to no avail. I was lucky that my parents saved me from all the heartache of hoping and being disappointed.
“Miss Winters?” asks the man again. “Are you home? Sorry to intrude on you like this, unannounced. My name is Dr. Liam Larson, and this is my partner Dr. Owen Philips. We are currently leading a team conducting some clinical trials with groundbreaking gene therapy…”
“Gene therapy?” I ask in surprise. I had not been planning to speak, but they caught me off-guard. My voice sounds strange and awkward; I have not used it in so long. I am a bit embarrassed that my throat feels like a rusty instrument.
“Yes. We’re looking for candidates between the ages of 23-26 to test a modification to an existing drug that has shown great promise. If you agree to join this study, there’s a chance that we might be able to give you the ability to see. Would you like to open the door and let us tell you more about our research?”
My mind has begun racing as I stand frozen and rooted to the spot. I place my fingers against my lips to keep from making any strange noises. I don’t want to betray how I feel by breathing too erratically, so I try to clear my head and settle my nerves. I have read about recent gene therapy research conducted for my disease, and it was extremely fascinating. Many people were able to regain their sight after the experiments, but there was no confirmation on whether it was permanent, or whether other problems would not arise. Still, I feel an incredible rush of excitement, and my imagination runs away with me. What if I tried? What if it worked, even for a few days? What if I could see all the things I have never seen?
I could see my sister, whom everyone declares to be stunningly beautiful. I could see my father, and finally know what he looks like when he releases that bellow of deep, booming laughter. I remember how prickly his beard used to feel when he would hug me, but my mother always said that she considered his beard handsome. How could something that feels so unpleasant actually be appealing to the eye? What does a beard even look like? Why was my sister always so obsessed with the color of her hair? Why did she struggle to dye it blonde, and then red, and then black? What do those words even mean? What does blue look like? I have heard that the sky is blue. I used to dream about supernaturally getting my vision back when I was a child; a fairy would come and grant me a wish, because I had been good, or she had heard me crying and taken pity. The first thing I would always do in these fantasies is run outside and look at the sky, and figure out what the heck blue means.
“I don’t think she understands what you’re saying, Liam,” said the man named Owen. He cleared his throat. “Look, lady. We have a great opportunity for you! This gene therapy stuff? It’s astronomically expensive. So, if you help us now, we’ll help you. You can get your eyes fixed for free. You could wait a few years for the drug to be approved for general usage—it could be decades—but it will probably cost millions of dollars to get the treatment, and be inaccessible to most people. So, if you let
us in, you can ask us questions and sign these papers. We’ll be out of your hair in no time. If you’re not interested, please tell us so we can leave.”
I am not sure why this man seems so rude. Crossing my arms over my chest suspiciously, I am reminded of all the false promises and misleading statements that people have ever said to me. I am reminded of why I left the city in the first place. Dealing with men like this on a daily basis was far more headache than it was worth. Why should I bother? What if I spend months undergoing trials, only to find that it doesn’t work for me? What if I never see even the tiniest glimmer of light, even after these doctors have convinced me to be optimistic and to even believe that it is highly likely? Why should I overthrow my quiet, tranquil existence for a potentially devastating letdown?
“I don’t need your help,” I say sharply through the door. I immediately regret the words as soon as they leave my mouth, but my pride is like a snowball being pushed down a hill. “Thanks for offering, but I’m perfectly happy being blind.”
“See?” Owen says with annoyance. “I told you this was a waste of time.”
The snow begins crunching again as he starts walking away, but I do not hear the second set of footsteps leave. I move closer to the door, and press my ear against the surface. I hear a quiet sigh.
“Please excuse my partner’s bad manners,” says Dr. Larson. “It’s really cold out here and we’ve been driving for hours. Dr. Philips is just… grumpy.”
A warmth and sense of comfort begins to spread through my chest at the sound of his voice. I open my mouth, tempted to apologize. I feel a strong desire to open the door and invite him in for tea. I have not had a conversation with another human being in a long time. I occasionally talk to my publisher over the phone, but it is usually concise and strictly business. Chatting face-to-face could be nice. My imagination starts to run away again, but this time, I keep it in check. The muscles in my forehead have pulled taut in yet another frown. Experience has taught me how this goes; to be fooled by a kind voice and soft words. Buried memories of a haunting deception begin to push into my consciousness. It is always there, chewing at the edge of my mind. Long ago, I promised myself that I would be wary of strangers, and stop trusting my own flawed perceptions.
“How did you get my address?” I ask him angrily. “How did you get my medical records?”
“Your old specialist recommended your name for the trial. Do you remember Dr. Howard? I admit, it was difficult finding you—but I pulled a few strings, and saw that you had some prescriptions sent to this address a few years ago...”
For a moment, it escapes me. Then I remember and swallow in embarrassment. “My anti-depressants,” I say, with silent fury. They had been prescribed to me when I suffered a small breakdown after my mother’s death. That was absolutely no business of his! Also, unfortunately, the infernal things had not worked.
“Yes. Please, Miss Winters! This treatment could change your life.”
I grit my teeth together angrily. “You should not be looking into people without their permission, Dr. Larson. I’m sure you could get in trouble for this.”
“Maybe.” He sighs again, and I can hear a soft noise, like he is scratching his head. “I only came all this way because Dr. Howard said that you were a really bright girl, and a lovely person. She said that if anyone would benefit from this research, it should be you. She also said you were a writer—she’s read some of your books, and was amazed with how much more you’ve accomplished than most other people with your disease.”
My books are my soft spot. I find it very difficult to be upset with people when they compliment my work. I pour so much of myself into those pages, that I cannot help being super sensitive to all acclaim and critique. I press my ear closer against the door as he continues.
“Heck!” exclaims Dr. Larson. “She even gave me one of your books, and it was spellbinding. I’m not a fiction-person usually, but I couldn’t stop reading. You’ve accomplished so much more than most other people, period! People who haven’t had to face the obstacles that you’ve had. You’re an incredible girl, and you really deserve this more than anyone. Just have some faith in me, Miss Winters. I promise that I can help you.”
I am a little annoyed with him, but my curiosity gets the best of me. “You read one of my books?” I ask him, putting my hand flat against the door. I find myself listening keenly for his answer.
“Yes,” he responds. There is a pause. “Blind Rage. The revenge thriller. I loved it!”
His words manage to draw a small smile from me. “Thank you, Dr. Larson.” My smile spreads through me quickly, and I finally understand what people mean when they describe fuzzy feelings in their stomach. It’s silly, but the doctor has made my day. Now, if he would only go away before anything more can be said which might ruin my day, that would be ideal.
“You’re a smart girl, Miss Winters,” he says softly, through the barrier of my front door. “You must know that in 2008, for the first time, there were three research trials done where patients with your disease saw vast recoveries of their vision. My partner, Dr. Philips, is a jerk—but he’s right. There’s only one gene therapy drug approved for use anywhere in the world, so far. In Europe they recently started making…”
“Glybera,” I finish for him. “I know.”
“Yes,” he responded. “And it’s the most expensive drug in the world, costing $1.6 million for treatment. I anticipate that once this drug becomes approved and available, it will be in a similar ballpark.”
“That’s okay,” I tell him, leaning my shoulder against the door. “I’m going to be a rich and famous author someday. I’ll be able to afford it, eventually.”
“But what about the time, Miss Winters?” he asked, his voice pleasing. “You could learn to drive a car! You could get married and have children, and see their faces. See them grow up. That’s what everyone with LCA really wants most of all. You could stop hiding away from the world, and get back to society—you could be comfortable around people again. It’s easier to communicate and form connections when you can see facial expressions…”
He should have stopped talking when he said he liked my book. This is making me upset. “Dr. Larson, if I wanted to form human connections, I would live in a location that facilitated more interaction. A city or town. Maybe I’d even stay in a nunnery or a brothel. But I am in none of those places. I am in the middle of a forest. In the mountains.”
“That’s exactly the problem! This isolation simply isn’t healthy for you, Miss Winters. You need to…”
“No!” I shout, pounding my fist against the door for emphasis. “Do not tell me what I need. I was perfectly fine before you came, and I will be perfectly fine after you leave. My life is wonderful, and I love my privacy. There are plenty of other deserving people my age, with my disease, who would be overjoyed to be selected. Go find them, and please get off my property, Dr. Larson.”
He sighs again. This man sure does sigh a lot. “Okay,” he responds, after a moment. “Sorry to bother you, Helen.”
“That’s not my name anymore,” I whisper—so softly I hope he cannot hear me.
This time, I do hear his footsteps departing. They are not as loud as before, and I imagine he must be stepping in the tracks left by his partner in the snow. I wait until I can no longer hear his marching, and finally bow my head in misery at my own self-sabotaging ways. I am acutely aware of the fact that I just lost the opportunity of a lifetime. The opportunity to have my vision returned and be a completely normal person. All because I was too scared to open my door to a strange man.
I had been blissfully lost in my writing only a few minutes earlier, but after this unexpected turn of events, I am in no mood to continue. I consider reading instead. Once a month, I have a few books shipped to my little cabin, and I have accumulated quite the library. However, as I walk over to my bookshelves and caress the braille titles, I feel dissatisfied and disappointed. Reading with my fingers is natural and easy, havi
ng done it my whole life, but I have always been curious to see what text looks like. I have always wanted to read a book with my eyes. I have always imagined that the first book I would read, if I ever regained vision, should be one that I had written. But now, I’ll never even see what my own books look like in print. I’ll never see the images on the cover, which are “hauntingly beautiful,” according to my publisher.
I stumble over to my bed, and curl up under the blankets. I think I will just lie here and call myself stupid, over and over again, for several hours before getting back to work.
Chapter Two