Shadowboxing
by M. F. Luder
I.
It's late November of 2004 when Ryan, sitting in his AP Literature class -- talked into taking by Seth, of course -- blinks and can't quite see what's being written on the blackboard. He pinches the bridge of his nose, a headache starting to form just above his eyebrows and seeming to move downwards, to the very back of his eyes. He tries to focus on the class, but his head hurts too much for him to be able to.
Seth places a hand on his arm, squeezing softly. "Dude, what's wrong?"
Ryan shakes his head. "Headache," he grits through his teeth.
He spends the rest of the class with his eyes narrowed and following the words of the professor, but unable to take notes. He copies Seth's notes later that afternoon, waves off any comment about the subject, and entirely forgets the incident the next day.
By the end of the following winter, March of 2005, Ryan has to accept that following the teacher's handwriting on the blackboard has gotten too difficult for him. He can't manage on his own, not anymore - not without asking whoever is sitting by his side if that's an s or an a, if that's an 8 or a 3.
He tells Kirsten and Sandy one Saturday afternoon that it seems like he can't see the blackboard, not when the teacher writes in very small numbers. Kirsten smiles, pats his hand that clenches around the edge of the table, and tells him that they'll schedule an optometrist appointment for Monday afternoon.
Kirsten goes with Ryan and stands by his side all the way into the doctor's office. She watches with her arms folded on her chest as Ryan tries to go over the printed letters on one of the office walls and can only see halfway down. Ryan's diagnosed as nearsighted and prescribed glasses. They leave the office, and then go to choose frames and the next day, Kirsten swings by to pick them up.
Ryan doesn't like them, as was to be assumed. Seth says that the glasses totally become Ryan, and Sandy says that he looks older. Kirsten smiles, pats his shoulder, and tells him that he looks very handsome in them. Still, Ryan gets contacts and only uses the glasses in the house.
Sometime during Ryan's final breakup with Marissa in his senior year, 2006, he starts having trouble seeing the slides during class when the lights are out. He grumbles to himself, hates the fact that he might need a new prescription - a higher prescription - and he mutters under his breath, "I'm fucking going blind." The irony of it all would not be lost on him later.
Ryan sighs and says through clenched teeth during one Wednesday dinner that he needs to go see the optometrist again. Kirsten nods, says she'll get an appointment for the following afternoon and she'll call him to let him know when to meet her. They do that and Ryan is right, his prescription has gone up a whole 1.5 in one eye, and 1.8 in the other. Expected, the doctor says, Ryan's still young. His sight might take a couple of years to stabilize.
When Ryan gets his new glasses back, he hates them. The new lenses are thicker and make his eyes seem smaller than they actually are. He uses the new contacts most of the time, even when he's at home, he hates the glasses that much.
The last seven months of 2006 are hard for everyone. Seth calls Ryan more often than not during the months Ryan isn't living with the Cohens. He misses them more than he can put into words. But he feels toxic; tainted and blurred altogether. Being alone sits better with him. He doesn't tell Seth about the fights, but he ends up finding out at the end. Ryan had known Seth would find out. It was... it was meant to be, because Seth always had a way of knowing things he shouldn't know, especially getting them out of Ryan.
Ryan finds his way back to the Cohen house by Sandy lead, and it fits. It feels right to sit on the futon with Seth sitting by his side, to his left, and breathe in the air that smells like the ocean and, strangely, of home. He feels empty and a bit hollow after telling Julie everything he could think of about Marissa. That night, Thanksgiving, Ryan sits at the edge of the pool. He's looking out towards the ocean and the sky when Seth meets him there and sits by his side, not saying a word. Ryan breathes in and wonders. Wonders about words Seth wants to say but seems to bite back, and smiles down at his hands because Seth is giving him silence, and he's grateful for that.Ryan starts making plans for Berkeley during the first months of 2007. He thinks about the fall semester and finally starting college even as he tries to read a book -- Poe, pages not making sense even when he goes through them the second time. Seth walks into the pool house and lets the map of Tahiti fall from his fingers to the bed beside him. He asks once about Summer and RISD but Seth shakes his head, so he doesn't ask again -- not after the epic fight about George only weeks before.
Sophie Rose Cohen is born on August 2nd, 2007. Seth points out that date is six days before the anniversary of Sandy meeting Ryan and bringing him to the Cohen house. She weights seven pounds eight ounces and is a joy to both her parents and her older brothers.
Ryan and Seth share a dorm room, and 07-08 passes in something of a blur. They are both balancing a heavy work load -- dealing with too many new things to care about anything except the next test, the next paper, the next deadline, the next lab report. Or at least Ryan does. Seth takes freshmen year with a little less concern about the subjects and more excitement toward this new part of their lives. Ryan just chuckles when Seth gets all psyched about it.
If Ryan starts noticing that he has to sit in the first three rows of the classrooms to be able to see properly, he doesn't say anything. If he realizes that the computer screen starts making his eyes sting and his head hurt, he pretends he doesn't.
By the time finals are done, in May of 2008, Ryan is thankful for small miracles. He can't quite handle anymore books with tiny printing or computer screens or last minute changes in the tests that are written down on the blackboard that he sat too fucking far away from to be able to see it by himself. He's gotten used to asking Tatiana and Eve for help. Claire doesn't even say word, only pushes her notebook closer to him. Once, Eve had to explain that Ryan couldn't see the changes in question four, so both of them wouldn't get their tests annulled.
The summer of 2008 arrives with arms spread wide and the promise of not having to read another book until he's back for sophomore year. He doesn't have many headaches, considering the highlight of his days, back in Newport, back in the pool house, is baby sitting for Sophie as he plays games with Seth in the plasma TV in the den.
However, the moment they return to school and Ryan tries to read the second class of Structural Analysis, he gives up, lets the book fall down to the floor, and closes his eyes. He leans his head back against the backboard of the bed, promising himself to make an appointment with an optometrist as soon as he can.
He finally goes to the optometrist by mid September, thinking that at least now he can stay at the computer for as long as he needs to without feeling his eyes are going to fall off. He goes expecting to be told that yes, his prescription has gone up, he's going to have to call Kirsten and let her know that he's getting himself new glasses and contacts, but it doesn't happen like that.
The guy smiles at him, changes lens after lens. It takes longer than it did the first time, to find a pair that actually allows Ryan to see anything other than just blurs of black in a white background that should be letters. God, Ryan, he tells himself, you're gonna end up blind before you're thirty.
But instead of giving Ryan the prescription, the guy says, "Do you have an ophthalmologist?"
Ryan shakes his head. "No, not really." He thinks about the doctor he was seeing back in Newport. "Back home, I think. I'm not sure if he was an ophthalmologist or not, though."
"Hmm. I'd rather you got an appointment."
He frowns. "What? Why?"
"Nothing, it's just better this way. Your eyes have worsened very quickly, and I'd rather he'd give you a more accurate prescription."
Ryan sighs, finally, and asks for a number of an ophthalmologist. He leaves the office, the guy telling him to try and get an appointment as soon as possible. Ryan tells himself he will, but when he arrives home, he realizes he has a lab report to get done, and the call gets pushed back.
January 15th, a Thursday, 2009
It's only after finals -- the holidays over and he's back in Berkeley for the spring semester in early January -- that Ryan has the time to sigh, lean back in his bed, and remember that his headache has become a constant reminder that he has to set up that appointment. He calls the number and schedules an appointment for two days later -- Thursday Janurary 15th, 2009 -- and hangs up.
Ryan had expected that the appointment would go like the ones he had before. A couple of questions, going over lenses, finding one that fit and then leaving with the new prescription. It didn't go like that.
He gets eye drops that dilate his eyes, his retinas get photographed, and blood required for other exams he doesn't understand. It's not until he's seated before the doctor and hears her words and all he can do is blink and look at her and feel himself go cold.
"Retinitis pigmentosa," Dr. McKay says, giving him a small smile. She has blue eyes and an easy demeanor, but he can't help but tighten his hold on the armrests of the chair.
"What?"
The answer comes in chopped words, brief sentences, at least that Ryan hears. Progressive disease, inherited eye disease that affects the retina, no cure as of now, gradual degeneration of the rods and cones, loss of peripheral vision and photosensitivity.
Ryan has to frown, think back, to notice that his eyes hurt from the changes of the dimly lit classroom to the outside Davis Hall, that he can't quite see what's behind his shoulders any more. Can barely even see the edge of his shoulders as it is.
"But it'll get better, right?" Ryan asks, his voice trembling, leaning forward on his seat, cutting her off mid sentence. "I mean, I can take pills or get eye drops or surgery or whatever--"
"There's no cure for RP, no, but it has been identified that a first step in managing it can be certain doses of vitamin A, which have been found to slightly slow the progression of RP in some individuals."
"In some individuals?" Ryan blinks, his headache coming back full force, his pulse hammering against his temples. "You mean, it doesn't always work?"
"No, I'm sorry, it doesn't."
"And there's nothing I can do?" His voice has a frantic edge to it, his tone lowering at the last word.
She gives him a sad smile. "Your difficulty to adjust either dark or dimly lit rooms will increase, as if you were entering a dark movie theatre on a bright, sunny day. Also, the field of vision will continue to narrow as it degenerates."
He takes in a shaky breath, letting out slowly. "Will I end up blind?"
"The degree of visual loss between patients is variable, but it should give you enough time to adjust."
adjust
The word is like a slap on the face. After that, Ryan doesn't hear much. He waits outside the office, waiting for his eyes to be able to focus on something, for them to be able to see. The eye drops that dilate his eyes make them water, make them sting from the inside out and he has to wait in the waiting room for them to work once again, for them to let him see.
"Should I call you a cab?" The nurse asks him when he's being waiting there for over ten minutes. "Or maybe a friend, to pick you up?"
His jaw tightens and he can imagine Seth in a class right about now, hearing his cell phone ringing and because it's Ryan's ringtone, leaving the class to pick it up. He can see him in the hallway, walking down, slowly, phone pressed to his ear while Ryan tries to explain what he's dong in an ophthalmologist office and why he didn't talk about it before and how come he can't drive himself home.
Ryan shakes his head. "No, I'm fine. I'll just wait it out."
"Honey, I really think--"
"I'll wait it out, thanks." He snaps, his tone harsh, but it gets his point across. The nurse gives him a sad smile, a nod of her head before walking away from him. Walking away from him, exactly what he needs. And no, he's not calling Seth, because he really doesn't want to have that conversation with him, nor is he calling a cab, because then he'll have to come back for the Rover and that's even worse.
And so all he can do is tilt his head back, close his eyes, and not think about what was just said three doors down the hall, in a cold office, and how his fate was sealed with two words alone.
It's two hours later, when his eyes have recuperated, that he arrives home and goes straight to his room and this is the first time he consciously notices that it takes him way too long for his eyes to adjust to the dark room that is his bedroom, the thick curtains pulled closed since morning. He blinks, and after long terse moments, he can see the shapes that are his bed.
Ryan lies down on his bed and glances around him, seeing the shapes of his dresser, and nightstand, before closing his eyes shut, trying to go over what the doctor told him.
When Seth arrives after class that afternoon and asks Ryan what he wants for takeout, Ryan shrugs it off, tells Seth that he won't be eating dinner, he's not hungry. Seth asks what's wrong and Ryan's too chicken shit to tell him the truth.
"The flu," Ryan lies through his teeth. "I'm fine, I'll just sleep it off."
Seth nods, pats Ryan's shoulder, and leaves the bedroom.
Ryan doesn't sleep that night.
The following days, Ryan tries to find out as much as possible about retinitis pigmentosa, or RP. He learned about Usher syndrome, which comes with hearing loss, a two for one kind of package. It's a rare condition, and as far as research goes, it says that hearing loss should have come first.
Which means that he might not have it. Might not.
He won’t know anything for sure until his lab work comes back, and he meets with Dr. McKay in a couple of weeks. All of the internet pages he finds say the same thing, that both symptoms could worsen over the span of years, or quicker than that. That some people with retinal degeneration may become blind but most retain limited residual vision though they still may declared legally blind. In the end, what he knows isn't much.
He's going blind, little by little and that's a knowledge he can't change, can't put out of his mind for more than mere minutes at a time.
Still, he might be going blind, but it's not going to happen over night. It's not going to happen over night becomes almost like a mantra to Ryan.
It's late February of 2009, a month and a half after the first diagnosis. Five weeks since Dr. McKay confirmed that it was retinitis pigmentosa. I'm so sorry, we can start looking at treatments and there are centers I can put you in touch with, so you start the adjustment process. It's three weeks to be exact, since the first time his heart clenched and he felt fear as he had never felt before, when his professor of Structural Analysis turned off the lights in the classroom and turned on the projector.
All Ryan can see for a moment is darkness around him, and he blinks, scared all of a sudden. It's not going to happen overnight, he tells himself, whispers under his breath, even as his left hand reaches out to the edge of his table and clutches it as hard as he can.
He hears people talking around him. Eve saying something under her breath and Charlie chuckling and he thinks he can hear Tatiana giggling, but he's not sure. The professor, Ryan assumes, starts with the slides, because the room falls silent and Ryan can only clutch the edge of the table even tighter.
"The flexibility method."
A pause, in which every student gets out his notebooks and pens. Ryan sits there, his shoulders set, his lips pressed into a thin line. His knuckles start to hurt, but he doesn't say a word -- can only bite the inside of his cheek as he breathes in through his nose and out through his mouth. Eve, who is sitting to his right, doesn't say a word about him not taking notes.
it's not going to happen over night
Still, there's nothing but darkness around him. The professor continues with the explanation, people writing down around him, and he doesn't even dare to reach for his pen, afraid he'll miss and his notebook will fall down and then everyone will know that he can't see a fucking thing.
He breathes in and out, and when the professor reaches the explanation of the flexibility matrix he blinks and he can see the white edges of the projection over the whiteboard. He breathes in again, slowly, and when he breathes out, he can almost see the numbers and the letters of the definition. Two minutes later, he can start to copy down what is being said.
Eve nudges him on the side, and Ryan turns around, blinking, thinking he can see her face but not being sure. "God, I hate this subject."
Ryan smiles, a tight smile that hurts his cheeks and his chest and his very lungs, and shrugs. "Yeah. I know."
When the class is done and he starts piling everything into his bag, the lights in the back of the classroom are turned on. There's not much change in the illumination, but it's enough for his eyes to take a minute to adjust to the change. He knows his friends and he knows they will wait, and he can't have that. God, he can't have that.
So, still sitting, he takes out his cell phone and he can hear Tatiana asking, "Hey, Ryan. Lets go."
He gives a smile on the general direction of where he thinks they might be, and shrugs. "Gotta make a call. You get going, I'll meet you there."
Eve chuckles, like she always does. "Yeah, sure. We'll save you a seat. Hurry up."
He nods, head down, thinking he should be able to see his cell phone in his hands, his hands, his lap, anything and everything, and waits until he can hear the doors of the classroom closing after his fingers. After that, he knows he's all alone in the room. And a heartbeat after that, he can see the color of his hands, the way he's holding the cell phone so tight, his knuckles start to hurt all over again.
He walks out of the classroom and it's everything all over again.
The sun shines brightly over him and it's too much, too bright, too fast. He grimaces, hand going over his eyes as they sting from the sudden brightness and he can't see anything but spots of light dancing under his closed eyelids. He breathes in, heavily, his eyes watering and he bites his lower lip to keep himself calm and collected. His hands tighten around the strap of his bag that lies across his chest and he takes a step back until he can feel the wall against his back.
There are students moving from one classroom to the other, and he can hear it clearly, but all he can see is darkness around him, pitch black and all he can feel is the prickling of his eyes and the anger building up inside him. He decides not to take notice of the fear that grips as tight as an iron fist around his throat.
I'm running out of time, he can't help but think. I'm running out of fucking time.
His breathing is hard and heavy through his lips as he lets out a long sigh. He's running out of time, and it's like sand he can feel slipping through his fingers.
He stands there with the wall against his back, his eyes closed and his hands gripping his bag for minutes that feel like hours until his eyes decide to grace him with sight and it's only then that he can finally push himself off the wall, put on his prescription glasses and walk to his next class.
Tuesday: March 3rd, Seth finds out.
It's the third day of March 2009, a Tuesday, when Seth remembers that Ryan has been doing the laundry for the past month when they were supposed to alternate weeks. He sighs, noticing that he's quickly running out of clean underwear and figures he can do the laundry this one time, right?
He picks up all of his dirty clothes -- three jeans, about ten t-shirts, underwear he didn't even know he owned -- before going to Ryan's bedroom across the hall.
The apartment is small. Two bedrooms and a large bathroom at the end of the hallway. A small kitchen which they only use for the fridge and sink, and eating breakfast on the counter. The living room that Seth uses as his private study because half of what he has to do is read. There's a large table for Ryan to do all the math work he has to do for all the subjects he's taking this semester.
Seth walks into Ryan's bedroom, always cleaner than his own, and looks around for the dirty clothes in the hamper. There's a t-shirt on the floor from last night when Ryan arrived late because he had a study session with Tatiana and Eve and Claire, all of whom Seth knows and likes a lot, for some test later this week. Fluids something, Seth thinks. He picks up the shirt then goes to the basket, piling the clothes on the bed to separate the whites from the colors. At least that something he learned, after the horrible incident involving a blue sock. There are only two jeans and more t-shirts and when he's going over the pockets of a pair of dark blue jeans, his fingers touch a piece of paper.
Money, Seth can't help but think and if he's lucky, a fifty. He pulls his hand out and it's not money. It is a printed page from internet, the link in blue letters on the left hand corner towards the bottom. He blinks -- head tilted to the side -- he can't understand. He reads the words, but he cannot understand them. Medical Encyclopedia, according to the link, and it's the title that catches his eye.
Retinitis pigmentosa
It takes him a while to finish the reading, paper printed on both sides --
retinitis pigmentosa commonly runs in families
-- and there are words he doesn't understand --
as the disease progresses, peripheral vision is gradually lost
-- but mostly, Seth thinks, minutes later when he finishes reading it --
may eventually lead to blindness
-- it has taken him this long, almost half an hour because --
severe visual problems do not usually develop until early adulthood
-- it's hard for him to understand, to believe, that there's a reason for Ryan to have printed this from the internet and hidden in his back pocket of his jeans, other than the need to know this, to learn this, and not tell Seth.
So when he's done reading, when he's gone over the symptoms -- vision decreased at night or in reduced light; loss of peripheral vision; loss of central vision (in advanced cases) -- and the lack of treatment -- there is no effective treatment for this condition -- and he recognizes some of the signs of this disease, the suggestion to make an appointment with his ophthalmologist as soon as possible, that he can't help but think, Why would Rya--?
And the thought stops there, right there, mid word, because then it hits him, like water pouring over his face and body and soul and leaving him cold and almost empty.
He takes a step back, and another, and another, until he's leaning against the wall. He closes his eyes, hands clutching the page in his fingers, and falls down onto the floor because there's one thing he knows, and that's that Ryan will hide anything that he believes is personal, private, and this falls under that category.
Ryan has retinitis pigmentosa
The knowledge hits Seth in the chest, making him gasp, and it's on the edge of surprise and shock that all the pieces fall into place -- the headaches, the use of very dark sunglasses, the couple of times Ryan didn't answered his cell phone even though Seth knew he wasn't in class, the secrets and the shifting and the shaking of his head -- that he knows, he knows, that Ryan has been lying to him by omission.
Ryan has retinitis pigmentosa
The second time he hears his mind say that, whispered with fear lacing the words--
may eventually lead to blindness
-- Seth feels like his whole world has shifted on its axis and might never be the same again.