Seeing Blind

Picture a red-head with green eyes. She’s seventeen, has three best friends, and a loving family.

What do you see when you picture this girl?

What don’t you see?

This red-head is Simone Charleston; she is me.

And she is blind.

It’s hard to explain what life is like when you’ve been seeing all your life and now you don’t. It’s been about a year since it all started and I still can’t seem to wrap my mind around this new life. Since then, I’ve been going through a cycle. Some days I don’t even want to get out of bed because I’m too depressed to even try. Other days I try to do too much; simple things that I used to do with minimal difficulty like finding a shirt to wear or putting on makeup. Yet the depression creeps in anyways once I realize life is harder to navigate without one of your senses; when I realize that life’s a bitch because it’s malleable; everything you think is solid can just as easily shift into something else.

“Simone! Are you ready?” I hear my older brother, Alex, call from downstairs. This is our usual routine. I stay in bed until Alex calls for me. He’s the one who helps me get ready since my parents leave for work early. As much as I hate everything about being blind, I hate this part most of all. I feel like a burden; like a freak who can’t take care of herself anymore. I rely on everyone to get me through my days, whether it be Alex, my parents, even my friends, and the constant company surrounding me only seems to suffocate me further.

It’s funny; I can’t see anyone’s definite facial features or body shapes which, in theory, should make it easy to shut people out, but since I permanently lost my vision, I’ve never felt more invaded; more on display to be poked and prodded at like an ugly scab on your back that you just can’t reach.

Nobody and nothing reaches me anymore.

With sight, you notice everything. You can see happiness, anger, and sadness. You can see the sunshine blanket a field of grass or see your crush’s face filled with your own matching nervousness before he kisses you for the first time.

All of these things are so trivial, so inconsequential to those that can see them. But for others who cannot, others like me, images just disappear and all you’re left with is a mixture of colors, shapes that don’t connect, and a constant feeling of alienation because of one simple fact:

I’m always one step behind others, an “other” I used to be a part of.

I don’t want experiences to be explained to me in terms that just don’t do them justice. I don’t want to be the only one not laughing at a family party because I can’t see my one-year-old cousin put a bucket on his head. I don’t want to walk around in fear that I may bump into a criminal holding a gun or step out into the street to cross and fearing that I may have stepped too early; early enough for a car to end my life quicker than a flash of lightning lights the sky.

People don’t appreciate things until they lose them. It’s pure human nature to take for granted the things that make life easy. People forget that everything they have within their bodies works as a system, but systems can fail and it’s better to have remembered all the good things that came from that working system because then it hurts less when you can’t use it any longer.

I didn’t appreciate what I saw until I lost the ability to see anything at all.

Still, no amount of regret will give me back the tears I’ve shed, the pain I’ve endured, and most importantly, the sight I’ve lost.

“Hey!” Alex greets me. I can hear him enter my room before I feel a presence flounce on to my bed, making me bob up and down with it. “Didn’t you hear me? Or did you lose that ability too?” he jokes.

If it would make any difference, I would roll my eyes.

Instead I settle for grabbing my pillow and throwing it in the general direction of his annoying voice. Once I hear a grunt and the pillow hit something, I send him a satisfied grin.

“Okay! Jeez, I guess it was too soon,” he says, referring to his insincere joke.

“I would say so.”

I hear him huff before standing up from the bed. He soon grabs onto my shoulder with his hand, letting me know where he is. My therapist, Suzanne, taught him that. She says it’s helpful to reach for the shoulders when wanting my attention. That way I won’t jump in surprise every time someone tries to steer me in the right direction.

My brother has been surprisingly good with remembering Suzanne’s advice. It makes me happy to know that our relationship is solid enough for him to want to take care of me when I can’t seem to do it myself.

I put my hands out in front of me, groping the air in search of his arms. Once I find them, I stand. Alex’s grip tightens with security and I let out my held breath even though, logically, I know I won’t fall.

I thought I’d stop doing that by now, but I guess not even therapy or Alex’s help can keep my fears at bay.

“Are you all dressed and ready to go?” Alex asks.

I chuckle. “I’m in a dress, right? I’m not that blind.”

Alex sucks in a breath dramatically. “Sorry to break it to you, but you’re actually not wearing a dress...,” he says, trailing off.

I look down instinctively and then snap my head back up, realizing I wouldn’t be able to tell either way. All I can do is trust my brother’s word, which is dangerous in its own right. “You’re joking.”

Alex laughs as I reach down with my free hand, hoping to feel thin, flowy material. “Yes I am joking,” he says. “I’m sorry, I had to.”

I shake my head, “Just get me downstairs, please. Can you manage to do that? It would be well worth it to kill you if you keep this up,” I retort.

I don’t need eyesight to know he’s making faces at me like a child. “Stop showing me your tongue and get me downstairs; I’m going to be late.”

Alex groans, but obeys. “How did you-”

“You’re my big brother, Alex,” I interrupt. “I always know.”

“Well do you know that you’re wearing two different colored socks?” he asks, mocking my tone.

I huff. “Alex, it’s not going to work this time.”

“Fine,” he replies, “suit yourself.”

As it turns out, the twerp was right.

------------------------------------------------------

Twenty long minutes later, Alex drops me off in front of my destination, The Center for the Blind and Visually Impaired. As the name suggests, it’s where I go for group therapy. I didn’t even know there was such a thing as support groups for the visually impaired until I was made an appointment with one. I guess I didn’t realize that blindness is like a spectrum; there are many types of blindness and anyone unfortunate enough to experience it in some way, can fall anywhere within that spectrum. The term “blind” can mean a lot of different things to a lot of different people. Some have total vision loss, others only partial. Some can’t distinguish one color from another, others can’t “distinguish” at all. Either way, the transition from seeing to seeing less can be a shaky one; one that isn’t easy to accept in the ways we’d prefer.

At least that’s how it is for me.

The Center has actually made things a little easier, as much as I don’t want to accept that. I was that girl who completely opposed therapy because I thought it was stupid and unneccessary. All of the success stories about people “finding themselves” through the use of therapy, I felt couldn’t apply to me. I could see it working for those with depression, anxiety, or even bipolar disorder, but how exactly does one learn to find themselves when they can’t physically find anything, let alone some abstract concept called the “self”?

Even with therapy, I still find myself contemplating that question.

I just haven’t come up with an acceptable answer to it yet.

So far, therapy has been helping me accept the fact that it’s okay to not accept my blindness always and totally. Suzanne often says that the number one problem that comes with taking on therapy is the person’s assumption that they need to come to terms with their issues instantly. “All that really does is put extra stress on you. You don’t need to be okay with the bad things that happen to you in life. Nobody else expects that and neither should you,” she had said during my first group session. “Everybody’s process of handling stress and trauma is different. Don’t compare your journey to recovery with somebody else’s.”

She’s right, and I’m trying to live by those words as best I can.

“So who wants to share what they did this week? Anyone brave enough to start us off?” Suzanne asks.

I’m ten minutes into my session and so far all we’ve done is sign in and sit down. Ten minutes to check in nine people sounds ridiculous, but we all need a little extra help finding our seats. We’re placed in a circle to allow for “total vulnerability”, or at least that’s what we’ve been told. I don’t really know how chair placement enhances open conversation, but I’m no therapist so I keep the comments to myself.

“Dean! Thank you for volunteering! Tell us about your week,” Suzanne says. I look around, trying to find him, but it’s not until he starts speaking that I realize he’s sitting directly to my left.

“I had a great week. I spent some quality time with my kids. Lori had to catch a flight to San Francisco so she left me with Devin and Sean for the week,” he explains.

Dean Porter has been coming to therapy pretty much all his adult life. He’s thirty-four and lives with his wife Lori, his “queen” as he likes to call her, and his twin sons, both fourteen.

Dean started losing his eyesight around the age of twenty-one due to Stargardt’s Disease, a form of juvenile macular degeneration that damages the macula, or the tissue that is in the center-back region of the eye. By the time Dean was thirty, the disease rapidly affected both of his eyes, causing his vision to hit 20/200, or legal blindness. As of now, the man has trouble adjusting to light and dark environments as well as having color-vision issues. The doctors who caught Dean’s disease say it’s genetic and it’s been difficult for Dean to accept that Stargardt’s was always going to be an inevitability.

“That’s great! How was spending time with your boys?” Suzanne asks, her overly-cheerful tone of voice making it easy for us to feel just as happy for him.

“It was fantastic,” Dean admits. “We stayed in, but we watched a lot of hockey, we ate dinner together every night, and we just got to spend some time together. I feel like we haven’t done something like that in years.” Dean clears his throat and sighs, like he’s about to let us all in on a very personal secret. I have a feeling that is exactly what he’s doing. “I love Lori, I love her more than my own self, but she often doesn’t leave me alone with the boys for long periods of time.”

“Why is that?” Suzanne asks.

“Ever since I lost my vision, I think she’s been too scared to trust me to take care of them on my own. I truly believe she isn’t doing it on purpose, but it’s hard not to notice how things have changed. Once I became legally blind, Lori has been on top of the twins, making sure they’re eating, doing their homework... I can’t help but think that she’s overcompensating for me, since I have trouble moving about within my daily life in a way she will never have to understand; she and my two sons.”

Before Suzanne has a chance to say anything, my hand goes up.

“What would you like to add, Simone?”

I turn my head to the left, towards his direction. “I get that feeling sometimes too, like the people in your life who do their best to adapt to you just end up swallowing you whole,” I confess. “I used to wrestle my brother for the TV remote. I used to play catch with my dad out in the backyard and have him tell me I had a good eye for softball. But now? My brother treats me like my body and my mind are made of glass. I can’t play catch anymore because I can no longer see the ball,” I say. I feel more words ready to spill out of my mouth, but I swallow them down. This isn’t about me right now. “I guess I’m just trying to say that I don’t think your worries about your wife are invalid. I’m saying that it happens to me too sometimes.”

After a few seconds, I feel a warm hand reach over and grab one of mine laying in my lap. It squeezes my own with such comfort and I smile, knowing that Dean understands.

I squeeze back, silently conveying my gratitude. As he pulls his hand away, Suzanne speaks. “That’s a very insightful analysis, Simone. She’s right, Dean. You have every right to question the way things change following some sort of tragedy. You may not categorize blindness as trauma, but it is. You’re still grieving for what you had and lost.”

“I am,” Dean replies. “It’s okay, though. I went through a period where I blamed everyone for my blindness, like it was something to be blamed for. I blamed myself, I blamed my wife, even my kids. I wanted things to be back to normal so badly, I wasn’t accepting my new life. That’s what ultimately hurt me. As much as I had to adapt, so did my family. I don’t blame them at all for having their doubts. God knows I’ve had all the same ones.”

“That’s fantastic, Dean,” Suzanne says. “You’re doing some great self-realization and you’re very brave for understanding your faults and growing from them. That’s all any of us can do. Thank you for sharing,” she pauses. “Anyone else want to discuss their week or want to share any difficult feelings they’re working through?”

A minute goes by.

“Jordan! Lay it on us,” Suzanne says.

I hear Jordan clear his throat. “Uh, yeah. Hi everyone,” he says timidly, almost like he doesn’t know why he’s decided to share and is now realizing he can’t back out.

Jordan Milano.

He’s fourteen and has the worst attitude about his vision issues out of all of us. Ironically enough, he can actually see while others in this circle cannot.

Jordan is a newer member, but I joined after him. He’s been coming to therapy for a couple of years now per request of his older brother and parents. Jordan has Achromatopsia. It’s a very rare condition that strips all colors from the eye, meaning he physically sees the world only in black and white. He was younger when his parents started noticing a problem. Jordan would complain of his eyes “roving”. He experienced blurred vision which became worse when in bright light. He often laid around in dark rooms because it was the only thing that helped him to see. After months of this, the doctors who assessed him explained that he had severe Achromatopsia. The lenses with which he’s been seeing have always been different from others around him. It wasn’t until that moment that Jordan realized that other people could see colors. He just assumed his vision was normal because he had nothing else to compare it to.

However, Jordan can still see fairly well. He is the only one in these sessions that can actually describe what Suzanne looks like. Yes, Jordan has issues reading facial expressions which has made him socially awkward and he always wears a blue baseball cap to shade himself from the lights and the sun, but if we’re being technical, he is much better off than the rest of us.

I can tell by the atmosphere in the room that my fellow group members think “how can someone, who is surrounded by people who have less than him, still find a way to complain?”

The kid isn’t mean, or at least I don’t think he’s trying to be, but the mood changes when he talks. It’s like some freaky sixth-sense that the other members share that just screams “ENTITLEMENT ALERT; JORDAN NEEDS A REALITY CHECK”. It’s often a struggle between feeling like he has no right to be here and feeling like he has a condition that the rest of us know nothing about; a condition that deserves sympathy, even if it’s less serious than others.

That’s what makes me different, I guess. He’s just a kid. He shouldn’t have to go to therapy sessions to make living his life more bearable.

“Don’t be shy. Tell us what you’re feeling,” Suzanne says. I can hear the amusement in her voice.

Jordan huffs. “Well, the other day I was at school and I embarrassed myself big time in front of this girl I really like.”

“How so?”

“We were in the cafeteria together, but we were sitting at different tables. I got up to throw my tray away and when I looked over, I swore I saw her looking at me. She started waving and, of course, I waved back in a super excited, super embarrassing way. But, since the cafeteria is bright and she was too far away for me to really see her face…” he trails off.

It takes me all of two seconds to fill in the blank.

I chuckle, as do the others. It’s not a way that says we’re making fun of him. It’s more like a “how cute is young love?” kind of chuckle.

Jordan doesn’t care. “It was really embarrassing and I blamed my stupid condition for it. If I were normal, I clearly would have noticed that she was waving to her friend sitting at the table behind me. She was never looking at me the way my eyes wanted me to believe. It’s stupid, but it’s the little things that make living with my condition that much harder.”

He says it in such a dejected way, making my heart wither. It’s hard to be young and experiencing first love in general. Yet, Jordan has double the problem since he has trouble seeing her face, knowing whether she’s blond or brunette, or understanding the concept of her favorite color.

Jordan’s experiences aren’t always better than mine or the others; they’re just a different kind of struggle; a struggle that hurts the same and consumes us at times we wish it didn’t.

“I’m sorry,” another member, Janelle, cuts in. “Maybe this is just my opinion, but you’re telling me you’re blaming your condition for something embarrassing that happens to everyone at some point in their lives? Seeing people go through that too. It just seems like you’re looking for reasons to hate your condition when in reality, there really isn’t anything wrong with you.”

I’m stunned at her demeaning response. Everyone is. I want to believe that I merely imagined it, but the suffocating silence in the room makes it obvious I didn’t.

It’s obvious that the rest of us don’t know what to make of Jordan. We have difficulty deciding whether or not he has a right to be angry or not when the rest of us can barely walk two feet without seeing what we might run into.

Clearly, some people believe the latter option more than others.

Since I can’t seem to keep my mouth shut today, I do what nobody else around this circle has done for Jordan yet; defend him.

“Are you serious?” I ask, avoiding even looking in the direction of her voice. “Are you really going to pick on him?” I pause, half expecting her to answer.

She doesn’t.

“Jordan is only fourteen and can’t tell us the color of the shirt he’s wearing. He can’t drive because he can’t tell the difference between red, yellow, and green,” I say. I’m going overboard a bit, but I won’t stop. “Tell me that you could wake up every day with an empty coloring book for eyes and no markers to fill in the blanks.”

I pause. “You don’t know what he feels inside, what he deals with on a daily basis. So I’m sure he’d appreciate it if you didn’t act like you did.”

I stop before I can do any more damage. I take a deep breath and stay quiet, hoping Suzanne won’t kill me. I start to sink in my chair, but I know I’m doing it for nothing. I can’t see Suzanne, but she can see me.

If she didn’t before, she most definitely can now.

It’s in moments like these that I’m thankful for my vision problems. Now I have an excuse for avoiding Janelle’s and Jordan’s reactions.

Maybe two minutes of silence goes by before I register Suzanne’s voice. “While I appreciate your fierce determination to defend Jordan here, I don’t approve of how you handled it, Simone,” she chastises. Her tone of voice is cool, yet controlled. I imagine she’s trying her best to put into words her reminder of “be kind, be caring, be open-minded”; three things I definitely was not just now. “Janelle,” she says, addressing her, “we never assume anything about another person’s life, whether it be their experiences, their feelings, or their traumas. I tell this group every week to be open-minded, which is something I feel you may need to work on,” she finishes.

I hold my breath. The room is filled with so much tension, I’m afraid any sudden jerk of a leg or clearing of the throat will set Suzanne off.

Then, the unexpected happens.

I’m sorry, okay?” Janelle speaks up. “I still don’t see you on the same level as the others here, but I don’t really know your condition, so…” she trails off. It’s obvious that Suzanne’s words affected her. She often is the one to challenge other members, but this is the first time I’ve heard her apologize and mean it.

“It’s fine,” Jordan responds, his voice barely above a whisper. “I get it.”

The sound of Semisonic’s “Closing Time” blasts from Suzanne’s phone. She considers it her alarm to keep our sessions within an hour. She thinks the song is fitting. I don’t think I’ve ever heard that song play without hearing her amused chuckle follow it. It always makes me smile.

However, I feel uneasy this time. The song plays, but I don’t hear Suzanne’s laugh. I may have really messed things up this time.

The sound of chairs scraping across the floor and the ruffle of book bags and pocketbooks signal the end of our discussion. I follow everyone else as I reach for my bag and stand, waiting for my brother to come get me.

This is the norm. There’s usually people coming in and out of the session room, guiding their loved ones out the main doors and towards home, wherever that is.

Alex is usually one of the last people to show up; he says it’s because of traffic, but I say it’s because he cares more about video games than his blind little sister.

Just as I’m about to make the journey to the door, I feel a tap on my shoulder.

“Thank you,” Jordan says once I turn around. “You didn’t have to defend me like that and get in trouble, but thanks anyways,” he continues.

I instinctively smile. “Don’t mention it. I don’t take back what I said, either. You still live your life differently than other, more fortunate people. That’s something all of us here can relate to,” I say, gesturing towards the other stragglers still packing up.

I can hear the smile in his voice when he jokes, “You’re right. Thanks for being my bodyguard.”

His words warm me up inside. The kid is usually so sad and depressed when he’s here. After a while, I figured that was just Jordan’s personality. Hearing him joke and loosen up a bit makes me wonder why nobody stood up for him sooner.

I think he really just wanted someone to say they understood, even if they didn’t.

“JJ!” a guy’s voice calls from the other side of the room. “Are you using your illness to pick up girls, now? Smart guy,” he says, coming closer. I hear Jordan let out a grunt, like he just got the wind knocked out of him along with saying the occasional “stop” and “let go of me”.

This has to be his brother.

“Who’s this?” he asks, most likely addressing me. His voice is deep and warm.

“This is Simone. She’s blind,” Jordan replies. He says this in the same way one would describe a math problem; matter-of-factly, like my blindness is just as much of a defining quality of mine as is an arm or leg.

“Thanks for that introduction, Jordan,” I say, trying to hide my embarrassment. I know I shouldn’t be, but I’m still getting used to the fact that my blindness is a part of me now. I think I always will.

“You’re waiting to be picked up from a therapy session for ‘the visually impaired’”, I can tell from his tone that he’s using air quotes, “it’s not really a secret,” he finishes.

The kid is a brat, but he’s a correct brat.

“Excuse my douchebag little brother,” the other one says. I’m caught off guard by his use of “douchebag” in relation to someone fourteen years old. The thought makes me laugh. “Apparently, Jordan lost the ability to have a filter once he couldn’t see color.”

I crack a smile, actually enjoying their brotherly banter. I can tell this is just their shtick, it’s obvious how much they love each other. They remind me of how Alex and I are; we’re annoying, but we’re close enough not to care.

“I’m Peter,” he finishes.

I smile and nod, but as I’m about to reintroduce myself, Jordan whispers up to him, “put your hand down. She can’t tell you want to shake hands, doofus.”

I try to hold in my laughter. I think it’s sweet how polite Peter is being. I can tell he doesn’t know how to act around me and usually that would annoy me, but with him, it’s more endearing than ignorant.

To help him save face, I reach my hand out in front of me, waiting for him to take it. “It’s fine. It’s nice to meet you, Peter.”

“It’s, uh, Pete actually,” he cuts in, awkwardly. “Just Pete.”

I then feel a soft and warm hand take mine. He shakes my hand firmly, yet securely, in an odd way that makes me feel protected. I can feel my face heating up into a furious blush.

Pete and I hold onto each other about three seconds too long for a standard handshake. I pull away first once I realize how awkward this situation is rapidly becoming.

The second I do, the escaping warmth of him renders me cold and I realize two things: I don’t understand what this exchange is doing to me and I’m annoyed with myself for finding meaning in a gesture as small as a handshake.

I place my hands down at my sides and squeeze them into fists. I won’t let my mind go where it wants to go. I can’t. Is it even possible to be attracted to someone I can’t see? I just met Pete, but as certain as I am that I like his personality, his voice, and his relationship with his brother, I’m just as certain that even entertaining this idea would be for nothing.

Why is that? Simple: he can see and I can’t.

This fact is what stops me every time. I stop because I’m reminded that you can’t fall in love with a voice. You can’t fall for a laugh. They are just tiny fragments of a person that I will never truly get to see. I’ve realized that I don’t want fragments. I don’t want to have to add up all the pieces of a person and still not see them in the way I should.

I don’t want to wonder.

I want to see faces and I want to see what those faces are telling me even when the people wearing them want to hide it. I want to see eyes. I want to get lost in the color of them like people do in movies and I want to truly believe them when they tell me everything will be okay.

Being a hopeless romantic and blind really isn’t the best combination.

Before I was blind, guys came easy. I guess it was because I could control how I looked and what I wore; the only two things that I thought boys cared about. With my eyesight gone, I can’t be sure anymore if I have pieces of hair falling out of my braid or if my makeup is too dark. I’m forced to navigate with only personality, something that may not always be enough.

I am equal parts confident and scared these days. It’s like there’s this dissonance between who I was before I was blind and who I am now. Simone back then had confidence and went for what she wanted. Simone now no longer feels confident enough to go after anything if she can’t be in control.

I know this isn’t fair to me or any potential guy I could fall for.

So I’m working on fixing that.

“Simone!” I hear my brother’s voice call from across the room, knocking the senseless anxiety from my brain. He’s actually early this time and I couldn’t be happier with his decision to be responsible for once.

“I gotta go,” I say to the boys. “I’ll see you next week, Jordan. Keep your head up,” I finish, hoping he’ll take my advice from earlier. I hold out my fist for a fist bump and I smile once I feel his hand bump me back.

“It was nice meeting you too, Pete,” I say, remembering to drop the ‘r’.

“You too, Simone,” he responds.