Mandy in her balloon handler outfit.

How the Macy's Parade Balloons Offered Me Hope as a Person With a Disability

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Last year, my friend took me to Universal Orlando to go check out the Christmas events they offered. As a Disney cast member who had unlimited admission to the Disney parks, I never really had the money or the desire to wander into what we jokingly referred to as “The Park That Shall Not Be Named.”

As we were wandering the park, a random person in a green jumpsuit approached us and asked if we wanted to carry a Macy’s balloon in the park’s parade that day. Apparently, every year, Macy’s sends down their balloons and floats from the Thanksgiving parade direct from New York City to us in Orlando.

As a kid, I was obsessed with the parade, and even more so with the balloons. Balloons to me meant hope. Something that big should not be “flying,” and to me, that defied all childhood logic. If something people don’t believe in can rise above and fly, then a kid who was always bullied due to physical and emotional disabilities can too, right?

Mandy with a balloon.
Mandy with a Macy’s balloon.

That day, as I was dealing with the holiday blues that come with depression, I felt free from all the pain. Although I have ocular albinism that limits my ability to see, I was able to obey my pilot’s commands and hand signals. Like the balloon that day, I flew along with it. I promised myself I would be back again one day, little did I know I would get a job from it.

Back in August, I lost my job at Disney. My depression hit hard and every interview I went on cringed when they saw I was disabled. I spent three and a half months trying to prove potential employers wrong about me. And then I came across a posting for a Balloon Handler. Although it was a seasonal gig, it holds the potential of moving forward into something else. A second chance at working again.

As I went into the interview and got the fair share of cringing upon them learning of my disability, a miracle happened.

I was hired by Universal to be part of the parade I was in as a guest the year prior.

For the first time in what seemed like forever, I found a company that valued me as a human being and not someone with a diagnosis. They gave me the opportunity for the next month to live my 5-year-old self’s dream.

Like the balloons that fly above my head everyday I step off in the parade, I am free. Free of discrimination, free of stress, free of the “You can’t” or “You’re not good enough” attitudes. Free of worrying how I will survive this tough time of year.

Each day, I go out there with all the stress left outside the gate and give it my all. And like the person who found me and my friend that day last year, I can only hope I can bring the same amount of happiness and wish granting they did for me.

Like a Macy’s Parade balloon, hope floats.

Follow this journey on Legally Blind Bagged.

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7 Insights for New Parents of Low Vision and Blind Children

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Over the past year, I have had the honor of connecting with many new parents of low vision and blind children. Across all of the different conversations I’ve had, some very common themes eventually arise in our discussions. Many of these parents, until the birth of their child, had never met a blind person, so they often feel in the dark in terms of how to move forward.

I want to share 7 insights I wish all parents of blind kids had. I hope these will be useful to readers.

Before we jump in, allow me to share a little bit of my own background with blindness. I was born with bilateral congenital cataracts and developed nystagmus, strabismus, and bilateral amblyopia. My current vision is 20/400. Or to put it more simply, I’m legally blind. I currently run a busy coaching and training company in New York City.

So let’s jump into those 7 issues.

1. Tough emotions.

Having a child is one of the happiest moments in a parent’s life, and yet when ocular conditions are discovered, that joy may be tinged with fear, sadness, anger, and the belief that “it must be my fault.” These emotions are completely normal. Don’t run away from them, and don’t let others tell you how you should feel.

However, if there are moments when those emotions are stealing your happiness, or they are taking away from time with your child and you would like to feel differently, there are some things you can do. The first is to realize that negative thoughts can generate even more negative emotions. It becomes a cycle of feel bad, think negatively, feel worse, have more thoughts, etc. Here is a simple technique to bring you back into the present moment, which can help you to feel a lot better. Bring your attention to your body, specifically the edges of your body. Allow your awareness to rest in the outline of your body, noticing where your body stops and the rest of the world starts, or where the rest of the world meets you. When you have a sense of that, shift your attention to your breathing and allow it to become comfortable and steady. Next think to yourself, “I’m present in the now.”

At first you might be tempted to engage in those thoughts again. Be patient with yourself, know the thoughts are not reality, and bring your attention back to your body. Take your time with this and practice it often. The more you practice, the more automatic it will become for you.

Take some time for yourself as well. Parenting can be overwhelming, let alone having to add on any medical necessities such as contacts, glasses, or eye drops. Schedule some time to relax and look after your well-being.

Finally, know that it is not your fault!

2. Fears for the future. Will my child have a normal life?

This is by far the most pressing issue about which parents are concerned, and understandably so, especially if you haven’t had much interaction with the blind community. But I always feel a twinge of sorrow when asked this. The sorrow is twofold — I can only imagine the concern parents have for their blind children, and it also highlights the problematic beliefs sighted people hold about being blind. I’ve never once considered my life abnormal, but I suppose in the eyes of someone who can drive everywhere and see the television from their sofa, the life of someone with low vision or blindness might, on the surface, seem abnormal.

If your child was born with or acquired low vision early in his or her life, their way of experiencing the world is perfectly normal to them. We don’t walk around thinking about how abnormal our experiences and lives are, because we do not know any other way of being.

Allow me to reassure you that the answer to your question is “yes.” Your child can have as normal or as extraordinary of a life as they want. Your child can excel in school, participate in extracurricular activities, live independently, have friendships, romance and a family, work, and achieve her or his dreams.

I would encourage you as parents to not settle for “normal” for your children. Society has a very limited view of what “normal” means for the blind, and it is usually wrapped up in either being Stevie Wonder, or more often, being completely incapable of doing well in school or living independently. Hold your blind children to high standards to help them succeed.

3. My child’s sight doesn’t seem that limited.

This one is specifically for parents of low vision children as opposed to completely blind kids. Vision loss is not predictable or always stable. Many of us experience visual fluctuations throughout the day or over a period of days. There are times when we can see better than expected, and other times we see a lot worse. This does not mean, however, that they have more vision than what the diagnosis suggests.

4. Accepting blindness.

It can be tough to accept that your child may not be able to do everything sighted kids do. There may be a temptation to downplay the sight loss or to hide it, out of denial or a sense of embarrassment due to the stigma of blindness. Please don’t do this. Your child needs exactly the opposite of denial and embarrassment.

Children learn their emotions and begin to build their self-image through the example set by their parents. If you reject that part of your child’s experience, they may reject that part of their identity. Some may even be tempted to hide their vision loss. This can set them up for a lot of hardship. Imagine a young adult who has hidden their low vision from their employer. They make a mistake on the job because of their vision, and they are subsequently dismissed for no other reason than they could not see and no one knew.

By accepting that your child has low vision/blindness, you are validating their experience of the world, and you are teaching them to love all of what makes them who they are.

5. Worrying about cane training.

The white cane can be a scary picture for parents, as it is both a public statement about disability as well as an indicator that the child really cannot see. Because, of this there can be reservations about signing off on cane training.

Please keep in mind that cane training is not given to all low vision children. It is based on an evaluation from your child’s mobility trainer and/or is in response to a strong possibility of further vision loss in the future. If training is suggested, it is because specialists believe that it will give your child greater independence and safety.

Some parents may worry about a social stigma around the cane, or that it will make travel more dangerous for their children. In terms of stigma, parents are absolutely right. It exists, and blind people can face some pretty big hurdles in terms of discrimination. However, that will happen with or without the cane. It’s is a fact of life. In my experience, however, carrying the cane tends to reveal the best in people. Strangers tend to be kinder, more helpful, and I get to speak with a lot more people than I used to before I took up the cane full time.

Canes make traveling a lot safer. They make it possible for us to see so we aren’t tripping over people or falling down steps. When my vision was better, I never used a cane, and the consequences were a broken foot, a chipped kneecap, and more bruises from falls than I can count. The white cane (and guide dogs) make travel much safer and encourage sighted people to be more helpful.

The temptation to refuse cane training is often at its core more about parents being self- conscious than it is about the child. Cane training gives your child a lifelong skill. It doesn’t mean they have to always use the cane, or even ever use it again after training — but it does give them the choice. Canes are not about fashion, they are a tool for independence and they can be lifesaving.

If you or your child happens to be fashion-conscious, there are some great fully customizable canes available through Ambutech and other companies. My suggestion is to stick with a white cane and only color accents, as white is more recognizable.

6. Learning advocacy.

At some point in your child’s life, most likely in regards to school, you are going to need to be your child’s best advocate. The state might not provide the right amount of support via qualified vision teachers and mobility instructors, the school or teachers might not allow for much needed accommodations, or something else entirely. In those moments, you’ll need to stand up for your child. Your child is protected both under the ADA and IDEA (Americans With Disabilities Act and the Individuals With Disabilities Education Act). Know your rights and don’t be afraid to advocate for your little one.

Of course advocacy doesn’t just mean standing up with things go wrong. There may be opportunities for you to help educate your young child’s classmates about their condition. This can help to create a more inclusive classroom environment and help your child to more easily build strong friendships.

7. Building connections with the blind community.

One of the best things my mother did for me was to enroll me in every blind children’s group in town. I split my summers between sleep-away camps and day camps specifically for blind and low vision children. The rest of the year we had a smattering of social outings, events, and activities. Looking back, these are some of my happiest childhood memories and also some of the most important. For those of us who do not go to schools for blind children, we spend our childhoods trying to fit into a sighted world where none of our school friends are like us. Joining groups and camps gives children the opportunity to make friends with other kids who are just like them, kids who know what it’s like to be dragged to countless ophthalmology visits; who know the struggles of learning Braille; who share in the same difficulties and accomplishments only familiar to the blind community.

These types of groups also facilitate sports and activities that are often not accessible in other areas of blind kids’ lives. These camps give children experiences camps for sighted kids and even schools cannot.

Taking part in these groups doesn’t mean your child is being limited to only blind groups or can’t join clubs or activities at school. It means they get to grow up knowing that they aren’t alone, and there are lots of kids out there just like them. It will link them into a community that they can choose to take part in or not for the rest of their life.

Finally, if you are a new parent of a low vision or blind child, please know that it does get easier. Your little one will grow up to be an amazing person. Your and their path is going to be unique, and you will grow together. Remember to be strong, and know that you have an awesome child who will have an incredible adventure in life.

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What I Gained When I Lost My Eyesight

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After an extended bout with bronchial pneumonia, my life turned upside down. I woke up one morning and found I could not see. My gift of sight was stolen from me, leaving feelings of isolation, loneliness and fear. At first I felt completely lost. Denial sets in as you first think it will simply go away like a common cold. But it didn’t. Nights are days. Days are nights. You live with it 24 hours a day. Vision loss can bring profound challenges along with moments of intense frustration and discouragement.

At first I was very sad about my loss, but then I made a decision — after going through some very dark moments (excuse the pun) — to go on with my life. When you’re faced with vision loss, you can either engulf yourself in self-pity or find ways to overcome this obstacle and continue to live. I believe as soon as you acknowledge this, work to accept new gifts, not accept limitations, and move on with your life, the better off you are. With vision loss you become a somewhat different person. How could you not? You learn to navigate by learning new skills. Eventually you adapt to living a new life.

I understand sorrow is a natural feeling, but when I first lost my vision, it was much harder for everyone else to adjust to it than it was for me. The hardest part is people treating me differently. Strangers have even asked me what’s “wrong” with me. I just say let’s talk about what’s right with me. People who don’t even know me will often start a conversation without introducing themselves. They tend to get hung up on all the wrong, personal and inappropriate questions such as, “Have you been blind since birth? What caused your vision loss? Are you completely blind? Will you ever see again? How do you use that ‘big stick’? How do you get around? Can’t glasses fix it? Isn’t there an injection for that?” And my favorite, “Gee, you don’t look blind.” Really? This is insulting and frustrating. I usually respond, “Well, you don’t look sighted.”

I now have a white cane, which I love. Although I still bang into things, I can’t imagine traveling without it. It is how I now perceive the world. My self-consciousness about it is gone in exchange for my increasing level of mobility.

I’ve been asked, “Don’t you wish you could see again?” This is a difficult question and hits me on many levels. People of course expect me to immediately exclaim “Yes!” But I’m finding it increasingly hard to answer. It’s been almost a year at this point, and I can’t do anything more about it apart from what I’m already doing. I also find the question somewhat offensive and subtly biased, coming from a sighted person who I feel is really asking me how I could possibly go on with my life while being blind.

Yes, early on I desperately wanted to see again, because that’s all I had ever known. I suspect I was dealing with some level of denial and anger. But now, I’m finding I would answer the question differently. I live in a very different world and have learned a lot. I don’t look back, feeling as the lyric in the jazz standard “Here’s to Life” says, “There’s no ‘yes’ in yesterday.” I don’t feel like a broken machine that has to be “fixed.” I guess it’s about coming to terms with my vision challenges and accepting what is.

Now that I have accepted my blindness, I’m beginning to feel joy and happiness once again as I continually learn to adapt. I do everything I did before — work as a writer, perform as a jazz musician, listen to cool books on tape, walk fast with my new longer white cane, and sail big fast boats, among many other cool activities. I’ve also met many new and wonderful friends I never would have met before.

I have new windows of perception opening up to me every day. I believe having meaningful relationships with people is what makes life worth living, not whether or not one of your senses works the same as everyone else’s. I’m the same person I was before, I just happen to not be able to see with my eyes. It’s only one aspect of who I am. My goal now is to help other people who are perceived by others to have a disability — to communicate that we just have a different ability. My gift of sight may be gone, but my gift of vision is just beginning.

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Jared Ellis Quits Job At Steak By Melissa After Being Told He'd Need to Wear Prosthetic Eye

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Many workplaces have dress codes, but most won’t ask you to hide your disability as part of the job – something Jared Ellis, a waiter in Hernando, Mississippi, claims he was asked to do.

According to WREG, Ellis said he was discriminated against by his former employer, Steak by Melissa, for not wearing a prosthetic eye or eye covering.

Ellis, lost his right eye in a bb gun accident five days before he was scheduled to join the U.S. Marine Corp five years ago. After he lost his eye, Ellis chose not to wear a prosthetic because of the headaches and discomfort it caused him.

“I finally came to a point where, this is me,” Ellis told WREG. “This is the way I look. You can love me or hate me, but this is my face. This is who I am.”

Ellis began working at Steak by Melissa about a month ago, and was interviewed without an eye patch or prosthetic eye. Then, on Friday, Ellis’s manager said the owners of the steakhouse wanted Ellis to wear either an eye patch or his prosthetic while working. Feeling discriminated against, Ellis quit on the spot.

“[W]hen he said it, it was just, I can’t explain the way it felt,” Ellis said. “It’s about everybody who’s ever looked in the mirror or had somebody tell them there’s something wrong with the way they looked. There’s nothing wrong with you. You are beautiful. Don’t let anyone ever tell you otherwise.”

The Mighty reached out to Steak by Melissa and has yet to hear back. 

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13 Questions I've Been Asked About My Eye Prosthetic

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I have micropthalmia and wear an eye prosthesis. Here is a list of the top 13 questions that I have been asked or have had to answer.

 1. Does the eye prosthesis hurt?  No, a well fitted, well made prosthesis should not hurt. From my past experience, pain usually means the prosthetic isn’t fitting properly and needs an adjustment. The eye is made by an ocularist; someone with both an artistic background as well as one in maxillofacial structure. They blend science and art together to create a one-of-a-kind product that is custom made for each patient. Each year patients can go back to the ocularist to have the eye professionally cleaned and polished and to make any adjustments to the prosthesis if necessary.

2.  Do you have a real eye or just a fake one?  In my case, I do have an eye underneath. Due to micropthalmia, it is much smaller than my other eye, so the prosthesis isn’t just for looks but also to help balance out the bone structure of the face. The type of prosthesis I wear is called a scleral shell. It sits over the real eye like a thick contact lens.  One of the advantages I have that not everyone else has is that the muscles around my eye are intact. When someone has surgery to remove an eye, those muscles are also removed.
Having these muscles allows for the prosthesis to look and act more like a real eye — it makes things more natural. I have been told that I’m pretty good at rolling my eyes.

3. Is it made out of glass
?  No. Glass eyes do exist, but mine is made out of different materials that are sturdier and more durable than glass.

4. How do you care for your eye prosthesis? I don’t take it out often, but usually once a week I will clean it with saline rinse and then put it back in.

5. Does insurance cover the cost of the prosthetic, and what is the cost?  Sadly, insurance companies see the eye prosthetic as cosmetic only, so I am lucky that my
ocularist will let me use a payment plan to cover the cost. This last prosthesis cost around $6,000. The next one will be $10,000 or more.

6. What caused you to need your eye prosthesis? I was born with micropthalmia with blindness in my left eye. Micros means small and opthalmia refers to the eye. Your eyes have a lot to do with the shape and bone structure of your face, so my eye prosthesis was necessary to help with that. Today, infants can be given a spacer or an artificial eye very early on. In my case, there was very little information available about eye prostheses where I lived. I didn’t received my first one until I was 5 years old. Because of that delay, my left eye is still somewhat smaller than the right. In my case, micropthalmia was a congenital abnormality that even today remains unexplained.

Doctors worried I would be developmentally disabled, but I sure proved them wrong. I am a community college instructor and have a graduate education. I live a typical, active life.    

7. How did it impact your vision? I’m nearsighted in my right eye, but the biggest issue is a lack of depth perception. To compensate for that, my right eye actually has a wider range of peripheral vision. I can drive a car; I just can’t ride a bike very well. I also
prefer if people walk either on my right side or slightly ahead of me on my left side so I can see them.

8. Did you get bullied in school for having a prosthetic eye?
Years ago, I was picked on. Middle school was horrible. I was called every name in the book, and really only had a few friends during those intense pre-teen years. Being called a “freak” and other names really stung. I learned to make my own jokes and turn a blind eye to the unsightly negativity of others. (See what I did there?) Jokes and sarcasm did two things: 1) If I could laugh at myself, the bullies had no power or influence over me, and 2) the jokes or comments broke down barriers and allowed people to see me for who I really am. Even today, I use humor as a means of expressing myself.

I also had to learn a hard but essential lesson — self-acceptance. By accepting myself for who I am, flaws and all, others learned to accept me as well. Today I live by the motto “My eye and prosthesis are a part of me, but they don’t define me.”

9. Have you ever lost your eye prosthesis?  One time in fifth grade, I had outgrown my prosthesis and was ready for a new one. It was loose, and it fell out. I was with my class in the library, and the librarian and the teachers were scrambling to help me find it.  Thank goodness it had only fallen down my shirt. Then in sixth grade, I rubbed my eye during class, and sure enough, out it came. The end result was some poor kid next to me climbing on top of the desk in terror.

10. What’s the funniest thing to ever happen involving your eye? When she was 4, my now 17-year-old cousin went around telling everyone she was going to poke their eye out. She had no idea about my eye, but every time she told me that, I would tell her I didn’t need her help — I could poke out my own eye. After months of hearing this, a group of relatives including myself and my mother were gathered at my grandmother’s house. The child once again started telling people she was going to poke their eyes out. I warned her, and when she said it again, I popped my prosthetic out and showed her. She high tailed it out of the room. After that, she kept saying “I don’t like it when people pop their eyes out.”  For weeks, she made sure she kept a wide berth between the two of us.

11. Have you used it for Halloween? I have my old prosthetics, and will sometimes get them out for Halloween or to show others. I have also popped it out as a practical joke
more than once. As my grandmother has told me, you have to be able to laugh or else you will cry. I choose to laugh.

12. Can you get an eye with a symbol on it or a different color?  Sure, if I had a part in a Hollywood movie or wanted to pay extra money, I could have those. But I prefer that my prosthesis match as closely as possible with my working eye. As you can see from the picture of the eye prosthesis that at the top of the page, that matching element can be kind of difficult to achieve.

13. Why would you want to write about having an eye prosthesis?
  Talking or writing about it helps educate others. We are lucky to live in a more open and accepting society that allows for us to embrace our differences. But people still want to learn so they can better understand. I’m open to talking about my eye and my prosthesis because it shows I accept myself. If someone is genuinely interested in learning about it, I am more than happy to share any information I have.

If anyone out there has a question I haven’t answered, you can post it in the comments and I will try to answer it.

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The Worst Part of My 'Bad Vision Days'

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Yesterday was a bad vision day. One of the major misconceptions about disability and
chronic illness is that the daily experience is consistent. Just like symptoms of depression or Crohn’s fluctuate, so does my vision. Within a single day, my vision predictably varies based on lighting and fatigue. With a progressive disease, my vision gradually declines over the years. A less obvious and less predictable feature of my vision is that there are good days and bad days. On bad vision days, for whatever reason, I see worse.

In one of my classes, the professor requested we break up into small groups to conduct miniature meta-analyses. He provided tables from which we were to obtain the necessary statistical values. This table – a relic from a paper published in the 1980’s – was pixelated and blurred, even to the sighted. As I tried to enlarge and convert the text to speech, it became apparent that this document was not accessible in any way. Whether I was having a bad vision day or not, I doubt I would have been able to read the minuscule font.

I cowered over my computer, holding my face a mere inch from the screen. I made jokes to
my fellow group members – a common defense of mine. Nonetheless, my self-doubt
and frustration was mounting. With my eyes vacillating in and out of focus, I could tell I was in for visual strain for the remainder of the day.

Following class, I walked into my lab space and asked, “Has anyone seen where K ran off to?” Unbeknownst to me, I was looking directly at her. She responded, “who, me?” and
I awkwardly explained “the lighting in here – the backlit window with everyone’s dark silhouettes! Sorry, blindy fail. Yes, you!” I surprised myself; normally I find I can recognize familiar faces from this mere 8-foot distance. Not today.

I was seeking help from K because I was having difficulty troubleshooting some errors in a computerized experimental task. My difficulty resulted from navigating a computer with lackluster accommodations. K came to the rescue, quickly tweaking my code and clicking between windows, between programs. I passively stared at the screen, not disclosing that what I perceived was a fuzzy gray blur. I feigned interest and intrigue.

After K fixed the bugs, I tried running through the task a handful of times. One of many challenges I encounter programming computer tasks is that my pilot testing is cursory. I
cannot actually do the task or determine if my data is collected correctly.  Following a few feeble attempts, I again asked to “borrow a pair of eyes.”

My final obligation of the day was a team lab meeting. While discussing a potential novel approach for data collection, the primary investigator (lead of the research) glanced at me,
asking why I was nodding. I of course had no idea she was talking to me. I awkwardly looked left to right, and mumbled “Uh, me?” This was followed by what I can only imagine was a look of confusion – of course, I couldn’t actually see the expression. I then fumbled through an explanation of my thinking.

The awkwardness emerging from turn taking repeated over the course of the meeting. At one point, I wanted to share my thoughts on a study design. We are a small enough group that we often opt out of hand raising in favor of a casual group discussion. Although both present challenges to those with low vision, in this case I repeatedly, inadvertently began talking over the primary investigator and other team members. My self-consciousness got the better of me. The embarrassment shut me up; I kept my comments to myself for the remainder of the meeting.

Walking from campus in the dark of night, I had my hands full with a jacket in one hand and my phone and keys in another. Rather than shoving my belongings into my bag to
free up a hand to use my cane, I decided it was a short walk, mostly well lit. I hadn’t fully pieced together the theme that I was having a bad vision day. I tripped down the stairs. I accidentally weaved on and off the sidewalk, having a hard time recognizing where the cement ended and the grass began. I used my hand to guide around a concrete wall. I walked slowly – well, slowly for me – and approached the train station.

Upon arrival at the train station, I was greeted by two of my lab mates. I hadn’t seen them.
I let them lead the way – to the train, on the train, transferring trains. I wonder if they realized I was doing this strategically. Usually it is seen as a gesture of chivalry to urge another to take the lead. For me, it was a gesture of desperation. I needed them to guide me.

When I got home, the burden of my bad vision day hit in full force. I was debilitated by
an eyestrain headache. As an absurdly busy aspiring academic, eyestrain headaches are often one of my chief complaints. When they hit, the pain is overpowering; I cannot do anything but rest my eyes. This means no more writing papers or reading articles or typing progress notes. I have to listen to my body and accept that sometimes, I cannot keep up my juggling act, in which I balance teaching, clinical work, research, and my interests in fitness and writing. In these dark times – literally, as I rest with a cool rag covering my closed eyes – I often question my abilities to persist.

A few months ago, a fellow member of the low vision community said to me that the limitations of our vision are self-imposed. He spoke to the idea that we limit ourselves, and our shame and self-stigma holds us back more than our vision ever will. I hate my bad vision days, and feel physically constrained by the limitations of my vision. And yet,
the worst part of my bad vision days is not my vision at all; it is self-doubt.

Bad vision days lend themselves to self-criticism and pessimism. This morning, after recuperating, I was reminded and relieved that like other bad days, bad vision days end.

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