Joy standing on a boat, leaning against a rail facing out towards the ocean.

What to Do With Feelings of Disappointment Over Disability

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There is a movement of positivity sweeping the disability community, and I love it. I think it’s empowering and life changing for those of us who have found ourselves stuck in cycles of denial, loneliness and even despair.  I love how people within communities like The Mighty can write about negative experiences and find the positive lessons within them. I am constantly learning something new and feeling encouraged.

But there are moments when I feel the gravity of my disability’s effects, and am flooded with disappointment. Like three months ago on Disneyland’s “Soaring Over the World” ride, in which I saw very little of the world over which we were soaring.

Having grown up legally blind, I am accustomed to not seeing the things other people see. I am used to smiling politely as people “ooh” and “ah” over stars in the sky, an adorable puppy wearing a sweater, the winning touchdown in a football game, etc. These missed sightings usually result in very little disappointment, but there are occasions when I feel side-swiped by disappointment, like at Disney.

We had waited in line for over two hours to experience the legendary “Soaring,” and I was excited to see what all the hype was about. I strapped my seatbelt on and squeezed my 6-year-old daughter’s hand with shared anticipation. But as the ride began, my excitement dwindled. There were no voice descriptions, and everything was extremely visual. Plus my husband, usually my extra set of eyes, was two seats away.  My neighbor leaned over occasionally, saying “African jungles!” or “Paris!” and tried to briefly describe them, but she was also trying to take in and enjoy the ride. And I realized with surprised sadness that I didn’t even want it described. I just wanted to see it.

The multisensory experience did include scents from each place, realistic breezes and sound effects, but the 3D effect that made everyone feel like they were actually flying was lost to me. The spread out images and colors that zipped toward my fellow riders like magic appeared to me as pixelated puzzle pieces that didn’t seem to form any recognizable picture. Something about the lighting and speed with which the images came made it impossible for me to see anything at all.

My two daughters, husband and neighbor exited the ride in awe, saying it was incredible.  I experienced portions of it, and still felt it was a neat experience, but nothing close to what everyone else raved about.

I was in the “happiest place on earth” and felt completely sad. But my sadness was followed by something worse: guilt.

Because I am a writer who loves to share insights about what living with vision loss has taught me, I felt guilty for feeling such sadness. I felt guilty for feeling something other than brave and grateful and positive. This feeling of disappointment in myself and my emotions seemed to increase my negative feelings exponentially. My sadness and guilt quickly turned into shame because of one searing thought: “There must be something wrong with me if I can’t look on the bright side all the time.”

I held that feeling in after Disney, not knowing what to do with it, and it squelched my desire to blog or write anything for The Mighty over the past couple months because I felt like a hypocrite. But then I came across a book that talked a lot about the benefits of negative emotion. Harvard psychologist Susan David talks about how our culture overvalues positivity in her book, “Emotional Agility,” stating “Research shows that attempting to minimize or ignore thoughts and emotions only serves to amplify them.”

In a recent podcast interview, Susan explains “Emotions have evolved to help us in the world, and with these emotions — even negative emotions — come gifts.” She goes on to explain that spending lots of energy trying to be positive can take away our ability to be authentic in our difficulty. “Sometimes when we’re spending so much time and energy trying to be positive, it takes away from having the real conversations we need to have with our family and friends.”

So when I felt that same feeling of disappointment resurface on a recent whale watching tour, I was a bit more prepared.  As the vessel rocked, and the other passengers skittered to one side of the boat to view a family of dolphins, I again felt an isolating disappointment over not seeing the sea life others raved about.

Fortunately my friend Mandy, who is also a trained therapist and extremely intuitive, was on the tour with us and sensed my disappointment. “How much of that were you able to see?” she asked as the boat pulled back into the dock.

“A shadow and change in the water here and there, but not much,” I admitted.

“Thank you for going,” she said simply, and her underlying intention was felt. She recognized that I came along to be with her and my family, to accompany them on an activity I wasn’t able to fully experience. She didn’t speak any further or try to add anything trite, such as “well, at least it’s sunny out!” or “at least you can hear the waves!” There was no trying to “make me feel better.” I sensed permission from her to feel whatever I needed to feel. And no judgment.

And so I let myself feel. I felt sad and disappointed. But I didn’t feel guilt over it, or shame.

I want to encourage my Mighty friends to sit with negative emotion from time to time without trying to stuff it or change it. Some things in life are disappointing, and so it’s OK —  refreshingly so — when someone in my community says, “this is hard.” It leaves room for me to connect and say “For me, too.”

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My Blindness Doesn't Make Me Inspirational

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I was diagnosed with retinitis pigmentosa at 14, but didn’t really start acknowledging the diagnosis and visual impairment until around age 20. That’s also when I started to hear that I was an inspiration. At that time and for a few years after, I didn’t really care; in fact, I thought it was sweet and a compliment to my ability to persevere and keep moving. But after learning about inspiration porn and getting told I was an inspiration many times when I was just doing average joe activities, I started looking at things a little differently.

Inspiration porn is when a person without a disability thinks a person with a disability is inspirational just because they live with a disability. That’s it… just them living is the sole reason they are called an inspiration.

Living as a blind person with retinitis pigmentosa is not inspirational. Most people would continue to live if they were diagnosed with such. Going through what I have had to go through to continue to live the life I want to live, taking orientation and mobility lessons and using adaptive technology is not inspirational. I did what I had to do to survive.

I am OK with you thinking the perspective I have taken on disability, the advocacy work I do related to disability, and the amazing opportunities I have been given and embrace are inspirational. But just because I continue to keep on trekking through this thing called life with a disability — that’s not inspirational.

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Photo via Thinkstock.

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6 Funny Things I Do as a Visually Impaired Person

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Living with a visual impairment can oftentimes be uncomfortable and embarrassing in social situations. What can I do? Well, I can laugh. Finding humor in these experiences makes the seemingly unbearable discomfort bearable and funny to think back on.

Everyone has something that limits them, right? I have never met a superhuman. Not yet anyway. With that said, I don’t think of my low vision as a debilitating disease. I have my brains. I have a sense of humor. I have people who love me, thank goodness. What more do I need? I can’t ask for more. I think what limits me can be cause for laughter. What other choice do I have? For this reason, I have made the list below. I hope you read this candid list and laugh with me. Or at me. Don’t cry over ranch-flavored fingers. Here goes.

1. Reaching for a solid object that turns out to be a liquid. Yuck.

I love ranch. I like milk. Wet glue comes in handy from time to time. These things, however, are not paper. I have on more than one occasion reached for a piece of paper or a sock on the ground to find it’s some sort of liquid instead. Nope. This is awesomely funny when it happens at home on a Sunday at the dinner table. Not so funny when it happens at a restaurant with acquaintances, but I laugh anyway. It’s especially unfunny when it’s runny chicken poop.

2. Is it a bug, dog poop, or yarn?

Yes, you read that right. A candy bar wrapper looks the same as a tarantula, which looks the same as poop, which looks like a piece of yarn. In essence, a dark or black thing on the floor could be anything. Do I reach down and pick it up? Usually no. Not until another human being confirms what it actually is. And yes. It could be yarn.

3. Having underwear hanging around the house when unexpected company comes over.

Oh my gosh. Yes, this has happened. The company was not even an acquaintance. Our dryer was on the blink for a time so my husband had hung his skivvies around the living room one night, because that’s what we were doing at the time, until the contraption was fixed. We had a lost dog show up at our door. A vet read the dog’s microchip so the owner was located. That lovely gentleman came by to pick up his dog immediately. Sure enough, I invited the man in before relinquishing his pooch. We had to say our goodbyes to the cute doggy, of course. The man seemed rather uncomfortable and anxious to leave as soon as he stepped inside my place. We hurried our doggy goodbyes and he was on his way. His demeanor changed instantly after entering my home.

That night, my husband returned from work and began collecting his under things that were hanging about the living room. I knew at that moment why the man was in such a hurry! We still laugh about that one.

4. Having a conversation with someone, that isn’t that someone.

Oh, this one is fun. I’ve done this on more than one occasion, but the most recent occurrence still causes a slight cringe. My husband has a really cool job, and from time to time, I get to accompany him to events and shindigs where he rubs shoulders with important and interesting people. It’s fun.

The last shindig I attended with him I managed to embarrass myself pretty good. I outdid myself, for sure. My guy went to the restroom, and of course, the event ended while he was gone. I had to get up from my seat and begin walking to the lobby of the venue. I began gushing about the organization we were there to support to whom I was sure was the guy who organized the event. I went on about my husband. The agency. How much Steve enjoyed working with him. Etcetera.

Two minutes into my babble, my husband and the man I thought I was talking to walked up behind me. I abruptly stopped talking. I wanted to hide under something. A rock. A shoe. Anything. Sigh. You can’t take this girl anywhere.

5. Asking a mannequin for directions.

This one is my favorite. I was in a mall with my father one day. I must’ve been about 10. He told me to go “ask that lady over there” where such-and-such was. I walked up to this person and asked for directions. When she didn’t move or respond, I knew I had been duped. Good one, dad. Good one. Thankfully mannequins are mostly headless these days.

6. Walking into a glass door… full force.

My husband and I bought our first home in May 2005. What an exciting time and one we’ll never forget. While looking at properties, I walked straight into a glass door. It’s a miracle the glass didn’t break. Embarrassing? Yes. Funny? Absolutely.

So there you have it. A short list of things I’ve done as a person living with legal blindness that keep me laughing. I am grateful to have some vision for sure. I certainly can’t complain. I have a loving husband who does not care a bit that I’m different. My two daughters are beautiful, smart, and funny. I have friends and pets and dreams and laughter. Everything is the way it is meant to be. Embrace what makes you different! Keep on laughing, loving, and living my friends.

Follow this journey on My Low Vision Journey.

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Thinkstock photo by Design Pics

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What I Wish the Doctors Who Said I Would 'Never' Could See

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I didn’t know this until a few years ago, but when I was 3 months old, doctors told my parents to prepare for what my life would be like. I had been diagnosed with several congenital abnormalities including micropthalmia with blindness in one eye. Doctors stated that I would never develop intellectually beyond where I was. I would never walk or talk or go to school or drive or have a job. Never. That is such a finite word, never.

Well, I certainly proved those doctors wrong. With prayers and love I blossomed. I was able to walk and talk. I not only went to school, but I have several degrees including a graduate level education. I have been recognized for my intellect and creativity. I learned to drive and am an independent adult. I have never let myself be held back by anyone.

I believe obstacles are only roadblocks in life if you let them be. You can choose to overcome them. That’s my attitude. I wish I could find those doctors who over 30 years ago told my parents “never” because well, I certainly proved them wrong.

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Image via Thinkstock.

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Why We Must Save Bookshare for People With Disabilities

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Author’s note: Bookshare, a service that provides large print and Braille digital books for people with print disabilities worldwide, is currently in danger of losing federal funding. As a student with low vision, I have been using Bookshare since 2011 and it has dramatically changed the way I read. Below, I have written a sample letter for my local congressmen and senators so they can see how important this service really is. Feel free to use my letter as a template to send to your local representatives.

Dear (Representative),

My name is Veronica, and I am a college student here in Virginia studying software engineering and assistive technology, to develop tools for people with disabilities. I graduated from Virginia public schools in 2015 with an advanced diploma and a 3.8 GPA. In addition, I run my own blog about assistive technology and disability life at www.veroniiiica.com. This wouldn’t have been possible if I didn’t have Bookshare, an accessible media library that’s in danger of losing federal funding in fiscal year 2017.

I have low vision, which means I can’t access standard print materials and require large print. Large print books can be very expensive and hard to find, and sometimes the font size isn’t big enough. Bookshare digitally scans in books so users can access them in whatever format suits them best — large print, Braille, or audio. Almost any book that can be found in the local library can be found on Bookshare, and I can read the same books my peers are reading. I’m not just limited to the small large print selection at my library or the even smaller selection at the local bookstore.

I have been using Bookshare since 2011, and it has helped me tremendously both inside and outside of the classroom. Before I had Bookshare, I would have to order large print books that would take weeks to come in, and then I would have to catch up with the rest of the class on the reading. My classmates would talk about books they had read for hours on end, and I would often be excluded from the conversation because large print wasn’t available for the book they were talking about, or the book would be too heavy for me to carry around, like in the case of the Harry Potter series. Once I got Bookshare, I could carry my books around on an e-reader or tablet, and download a book almost instantly to read in class. I started reading more and more, and was able to join more discussions in class.

Education is invaluable, and with accessible materials, more students are able to learn and go on to pursue higher-level education, enter the workforce, and contribute to society. By making these materials accessible, students can thrive in the educational environment, as opposed to failing because they can’t see the materials and believe they just can’t learn.

People with disabilities are the largest minority, with about 1 in 5 people having some type of disability. Disability affects all economic classes, races, nationalities, and other demographics. By funding Bookshare, it ensures that more than 400,000 people with print disabilities are able to access materials. Without it, the responsibility would fall on state and local governments to provide for their students, and the selection wouldn’t be as large, easy to access, or as inexpensive as Bookshare. Bookshare is able to create materials at a cost 15 times less than the previous national program.

I hope you will advocate to restore the Technology and Media FY2017 budget line to $30 million, the same as it was in 2016. Bookshare is extremely important to me and so many other students, and we don’t want to imagine life without it.

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Thinkstock photo by MaskaRad.
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Josh Sundquist's First Novel Explores Blindness, Identity, 'Love and First Sight'

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The following is an excerpt from Josh Sundquist’s debut novel, “Love and First Sight.”

Vice Principal Larry Johnston extends his hand.

To clarify: I don’t see this. I hear the swish of his shirtsleeve.

“Nice to meet you, William.” The fabric sound plays again—the hand retracting. “I’m sorry, I guess you can’t do that now, can you? You probably want to feel my face?” He grabs my arm and smacks my palm against his cheek, knocking me off balance so I have to step into the musk of his aftershave. “Where do you normally start? Eyes? Nose? Mouth?” He shifts my fingers across the front of his face with each suggestion. His skin is rough and pockmarked, like the outside of an orange.

“No, actually, I don’t do that,” I say, pulling my hand away. “I identify people based on their voices.”

“And…also…” I add. I can’t resist.

“Yes?” he asks, all eager to please.

“Well, I don’t usually touch faces, but I am gifted with a heightened sense of smell that allows me to recognize a person’s pheromones, which are concentrated just below the ear, so if you wouldn’t mind…?” I touch my pointer finger to my nose.

Love and First Sight book cover.
“Love and First Sight” book cover.

His excitement drops. “Oh… you want to… smell… my ear?”

“Pheromones are like faces to me. Only if it’s not too much trouble, sir.”

“Oh, no, no trouble at all. I just…No trouble, certainly I would like to accommodate you.” He steps close enough that I can feel the heat of his body, which is a signal that (a) he is falling for it — sighted people always do, the suckers — and (b) I’ve taken the joke far enough. I don’t actually want my nose anywhere near his old-guy earwax, after all.

“Mr. Johnston, I’m kidding.” I hold a hand up to stop him. It sinks deep into fat rolls, presumably around his midsection. I hope. “A joke, sir. I don’t want to smell your ear.” When I pull my hand away, I wonder if it leaves a visible handprint or even fingerprints in his squishy flesh. I’ve heard that happens when you press an open palm against a soft surface like sand, dough, or wet paint.

“Oh, right, yes.” He lets out a forced chuckle that sounds like a wheezy smoker’s cough. “A joke. Yes. Very funny.” Mr. Johnston’s voice is deep and grizzly. If you listen carefully, you learn that a particular set of vocal cords produces audio vibrations unlike any other in the world. Voices are the fingerprints of sound.

“Shall we head to your first class?” he asks. He grabs my arm from behind and starts to push me out of the front office. I’m sure he thinks it’s helpful to lead me like that, but I instinctively swap our positions so I am holding his arm instead.

“I’d prefer we walk like this,” I say. Now I’m in control. I can let go at any time.

“Yes, all right, that’s fine,” he says.

I’ve spent most of my sixteen years around other blind and visually impaired people, so this is the first time I’ve actually had to execute a Hines Break in real life. Fortunately, Mrs. Chin made me practice so many times I could do it automatically with Mr. Johnston. The main purpose of this little arm reversal is that it puts me in charge. To put it in dating terms, I can now be the dumper rather than the dumpee. I’ve heard the horror stories: Blind people standing on street corners waiting for a crosswalk light to change, only to have a well-meaning but annoying stranger come up from behind, grab their arm, and say (overly loud, of course, because they always assume we are all deaf, too) “LET ME HELP YOU!” and shove them across a street they were not intending to cross. And then the stranger lets go and disappears into the void (“YOU’RE WELCOME!”), leaving the blind person stranded on an unknown street corner.

I feel the floor change from the carpet of Mr. Johnston’s office to the hard tile of the hallway as I follow him through the doorway. “Can we start at the front door?” I ask. “That’s where I’ll be coming in each morning, I assume.”

“Isn’t that where you came in today?” he asks.

“Yes, but my mom took me from there to your office.”

“Well, then, simply imagine that instead of turning into the office, you walked in this direction toward the stairwell, and you’ll be on your way to first period.” He starts to walk, presumably toward said stairwell. But I stand still, gripping his arm tightly so he is forced to stop. (Behold the mighty power of the Hines Break!)

“It doesn’t work like that. I can’t…” I drift off. I hate sentences that start with “I can’t.” But as it happens, I was born completely blind, so one thing I truly can’t do is imagine an overhead map and then make up different routes or shortcuts. I can walk from A to B, yes, but only if I memorize a list of actions: How many steps to take and when to turn and then how many more steps to take before I’m there. I can sniff odors like a bloodhound and echolocate sounds like a bat, but it is simply impossible for me to infer a new route using my imagination. “Look, Mr. Johnston, can we just start at the front door, please? That would be much easier for me.”

“Are you sure you don’t want us to assign you a full-time aide? The state would gladly pay…”

“I know, I know, but that’s not why I transferred here. Having a babysitter walk me around school every day is not going to help my street cred.” Honestly, it’s not just about my street cred. I transferred because I want to prove that I can live independently in the sighted world. No dependence on charity. No neediness. My parents sent me off to the school for the blind back when I was little. Right after the Incident. It was “for my own good,” to “protect me,” and blah, blah, blah. But if I want to eventually land my dream job, to make a name for myself as the Stevie Wonder of journalism, it’s not going to happen within the confines of the blind bubble — excuse me, the visually impaired community. I have to go mainstream.

I hear Mr. Johnston sigh. But when he speaks, there’s a hint of sympathy in his voice, as if maybe he was once young enough to care about his own street cred. Or maybe he still does. “Very well, William, to the front door we shall go.”

He guides me there. “First I need to get my bearings,” I say.

“Well, the door is in front of you, the wall is beside…”

“No,” I say, pulling my iPhone out of my pocket. “I literally need compass bearings.” My compass app tells me I will enter the building facing west. Got it: west. (Seriously, how did anyone get by before talking smartphones?) “Mr. Johnston, let’s head to English. If possible,” I say, “please walk in a straight line and tell me when we are going to change directions.”

“Very well.”

We walk twelve steps west, twenty-three steps south, and then turn west again. Mr. Johnston tells me we are at the base of a stairwell. I hear footsteps rushing by on both sides of us, students in a hurry to get to first period. Up to this point, I’ve kept my white cane folded in my back pocket. No use drawing attention to myself if I don’t have to. But I’ll feel safer using the cane on stairs than relying on a vice principal with a lifetime total of three minutes’ experience guiding a blind person.

I pull it out and, with a quick flick of my wrist, snap the whole thing open. People have told me this looks like a Star Wars lightsaber turning on. That’s not a particularly helpful description for me, though. Which also makes me wonder why it’s called a “white cane” in the first place, since the people who use them can’t see its color. Anyway, I reach out for the handrail, but my fingers grab something soft instead. A body part. Chest level. Boob alert.

“Oh, my God, I am SO sorry, I tooootally didn’t see you there,” says a female voice. That’s what a white cane will do for you: Not only can you get away with copping a feel, the girl assumes it was her fault and apologizes for it. Let me assure you, random girl, you have nothing to be sorry about. Completely my fault. And my pleasure.

“No problem,” I tell her. “I didn’t see you, either.”

She doesn’t laugh. She is already gone before I say it, the sound of her footsteps lost in the shuffle. I hate that. When I discover I’m talking to someone who has already walked away. Feels like when you tell some long story into your cell phone and you wonder why the person has been silent for a while and then you realize the call was dropped at some point.

At the top of this flight of stairs, Mr. Johnston tells me we are going to turn 180 degrees and go up another. I continue to climb with one hand on the rail and the other pencil-gripping my cane as it surveys the next step. Once we’ve reached the second floor, I fold the cane and return it to my right back pocket. I can feel how the fabric of my jeans has stretched around that shape, the form of my folded cane. For the first time, I wonder if this distortion is visible.

Footsteps drop all around us like a heavy rainstorm. As Mr. Johnston guides me eighteen steps east through the crowded hallway, he shouts, “Clear a path, people! Blind student coming through! Blind student coming through!”  Wow, thanks, Mr. Johnston. I’m sure this is gaining me so many popularity points at my new school. My election as Prom King is now all but assured.

We pause at the door to my classroom so I can dictate the directions into my phone. (“Enter building, walk twelve steps west, turn south, walk twenty-three steps…”) I’ll have Siri read them back to me after school until I’ve got the route memorized.

“Attention, everyone!” Mr. Johnston says as soon as we cross the threshold. His voice sounds pleased, maybe even surprised, by its ability to silence the chattering room. “This is Will, a student who has transferred to our school this year. He’s blind.” Perhaps because this is English class, he adds a helpful definition of the word: “He can’t see anything… nothing at all.” He pauses to allow the gravity of my tragic situation to sink in. “Life is very difficult for him. Please offer him your assistance whenever you can, because…”

“You know I’m still standing right beside you, right?” I interrupt. There’s a snort of laughter from the students, and Mr. Johnston’s arm stiffens against my fingers. It’s probably unwise to make fun of your guide, the guy who has the capacity to lead you, say, directly into a brick wall. But come on, I don’t need eyesight to know his speech was making the entire room squirm.

“Yes, William, I—I…” he stammers.

“Listen, sorry, I appreciate your help,” I say. “Can you guide me to the teacher?”

“I’m right here, William. Or do you prefer Will?” asks a female voice standing maybe two arm lengths away.

“Most people call me Will,” I say.

“I’m Mrs. Everbrook. I’ll take it from here, Larry.”

“Very well,” says Mr. Johnston. “William…er, Will, I will meet you at the end of this period to escort you to your next class.” He shuffles out.

“The bell hasn’t rung yet, boys and girls,” says Mrs. Everbrook. “Until it does, you can go back to texting underneath your desks and I’ll go back to pretending I don’t notice you have your cell phones out of your lockers.” Unlike Mr. Johnston’s, hers sounds like a voice people listen to. “Will, there’s a desk open immediately to your right,” she says. I sit. She continues, “I was told you’d be in my class, so I’ve already talked to the library, and they can get you all the books we’ll be reading this term. Do you prefer braille or audiobooks?”

“Braille, please. And thank you. For talking to the library, I mean.”

“No problem. Whatever else you need, just ask. I’m happy to help. Otherwise, you get the same treatment as everyone else. This is Honors English, and I expect honors-level work from you.”

“Thank you,” I say. “That’s very nice.”

“You may change that opinion after I grade your first paper. No one has ever accused me of being nice. But I try to be fair.”

“Then I hope this request appeals to your sense of fairness: I type notes into my phone during class so that it can read them back to me later. Is that all right?”

“Fine by me. Just don’t let me catch you texting your girlfriend during class.”

If I had a girlfriend, I think. I dated several girls back at the school for the blind. But it would be different here. Dating a girl without a visual impairment, I couldn’t help but be beholden to her. Dependent. Needy.

“Oh, no girlfriend, huh?” she asks.

“How can you tell?”

“Your inability to see doesn’t stop your face from speaking what’s on your mind.”

“Hmmm. Well, I did meet a girl downstairs this morning. She seemed nice.”

“Anything else?”

“She was also very apologetic.”

“I don’t care about the personality of your crush, Will. I mean any other accommodations you need?”

“I wear one earbud in my ear.”

“Because?”

“My phone reads everything on-screen to me — the names of apps, the selections on menus, all that. The earbud will let me hear the phone without disturbing the class.”

“How about that? Anyway, it’s fine. You can use your headphones. Just don’t—”

“Let you catch me listening to music in class? Got it.”

“I was actually going to say anything other than country.”

“What?”

“Don’t let me catch you listening to anything other than country music during my class.”

“I’m not into country, so I guess I’ll just be listening to you teach.”

“I like you, Will. I think we’re going to get along just fine.”

Which is good, because it turns out I have her again for third period. And that class begins with a major social disaster.

If you enjoyed Chapter 1 of “Love and First Sight,” you can purchase via Amazon or learn more on Josh’s website.

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