Carla Ernst.

What I Gained When I Lost My Eyesight

82
82

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.

We want to hear your story. Become a Mighty contributor here.

82
82
JOIN THE CONVERSATION

RELATED VIDEOS

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

12
12

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. 

12
12
TOPICS
JOIN THE CONVERSATION
These are several examples of scleral shell eye prosthetics I have worn over the years. Each one costs over $3,000 so why wouldn’t I keep them. The left one was my second manufactured eye prosthetic that I wore throughout elementary school. The ones beside it and the one I wear now are handmade, and fit and look better than the manufactured eyes.

13 Questions I've Been Asked About My Eye Prosthetic

42
42

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.

We want to hear your story. Become a Mighty contributor here.

42
42
JOIN THE CONVERSATION

The Worst Part of My 'Bad Vision Days'

12
12

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.

We want to hear your story. Become a Mighty contributor here.

 

12
12
JOIN THE CONVERSATION

Why I'm Thankful a Store Manager Called Police About My Guide Dog

3k
3k

It was early spring of 1998. Pantera, my first guide dog, and I had been a working team for just six months. I was enjoying the newfound freedom a guide dog had brought into my life as a young wife, mom and recent graduate with a Master’s degree in counseling.

On this evening, my husband Steve and I were on our way home from a wedding reception. We’d just seen dear friends, and I was feeling particularly confident in the relationship I’d built with Pantera. As we entered the store, we were laughing and enjoying the evening together. I was loving the ability to walk confidently with my guide dog by my side.

Steve had just grabbed the cart when the store manager approached us and said, “No dogs allowed.”

In my mind, I thought, oh this is one of those times a little education is needed. “This is my guide dog,” I explained, expecting the manager to move on. He did not seem to be listening. He pointed to a sign that read: No Pets Allowed. Steve re-emphasized that Pantera was a guide dog and I was blind. We had the right to enter the store, he reminded the manager.

The manager pointed again to the sign:  No pets allowed. Patiently, Steve said, “This isn’t a pet. She’s a guide dog.” I pulled out my access card from Guide Dogs for the Blind and showed him the summary of the laws. Perhaps he just needed further education, I thought, struck by his unwillingness to listen to us.

The manager was unmoved. “No. No dogs allowed. If you don’t leave, I’m going to call the police.”

The police? That was an unexpected turn. How did we get from entering the store with my guide dog to calling the police? Simple education had shifted to defending my right to be in the store, and it felt surreal. “We’re not breaking the law. It’s perfectly legal for us to be here,” I said.

“You stay at the front of the store,” the manager demanded. “I’m going to call the police.”

“Please do,” Steve said. We were in disbelief. What was happening? This seemed to have moved beyond discrimination into the bizarre. Our kids were waiting at home, and this quick stop was talking longer than expected. We quickly walked through the store to pick up our needed items.

“He’s watching us,” Steve told me as he spotted the manger craning around an aisle, as though we were dangerous criminals.

The cashier who checked us out was oblivious to her manager’s concerns. She was friendly and talkative, and I’m not sure she even noticed Pantera. But the manager was waiting for us as we approached the exit. He was furious. His indignation felt ridiculous, since we knew Pantera and I had every right to be in the store.

“The police are on their way,” he snarled. “I’d like you to wait for them outside.”

We complied, not because we had any obligation to obey this man, but because we needed to see this through. He had not heard anything we said. He had ignored our right to access and had been contemptuous and disdainful because of my guide dog. We’d been treated as though we didn’t deserve the same rights as others, and as we walked outside I was struck with empathy for people throughout history who have experienced discrimination. I couldn’t get my head around the pain of discrimination until we felt his blatant suspicion and mistrust that night.

It was a chilly evening as we stood outside and waited for the police to arrive. Finally, a patrol car pulled up and parked near the entrance to the store. The manger walked out to meet the officer, who got out of his car and walked straight to Pantera. He bent over and rubbed Pantera’s ears, then looked up at Steve and me.

“This is a beautiful dog,” he said, sending a clear message. He stood up and turned to the manager. “Sir, you need to understand that you can choose not to allow these people in your store. However, you would be subject to a hefty fine as a violation of the Americans with Disabilities Act.”

The wind knocked out of his sails, the manager didn’t even acknowledge us, let alone apologize. He just turned and slithered back into the store. Before the officer left, he said he was sorry about the incident and reassured us that, of course, we were welcome to come back and visit the store anytime.

Stunned at the way the manager had behaved, Steve and I talked about the experience all the way home. I’d actually been denied entry to a store because I had a guide dog. Now what? I knew I couldn’t just go home and forget about it.  I felt that something good could come from our experience, but I wasn’t sure how.

I went into work the next day and told Julia, my superviser. She was appalled. “That can’t happen!” she exclaimed.  She knew the owner of the grocery store chain and immediately called him. He was shocked and apologetic, and referred us to a woman in the Human Resources department, who was also shocked and apologetic.

We also wrote a letter expressing our concern that something like this could happen, and citing my rights under the Americans With Disabilities Act. The grocery store’s corporate office was gracious. The offending manager was required to write us a letter of apology and gave Pantera a gift card to Petco. The store also required him to take two weeks unpaid leave.

These responses soothed the sting, but I still didn’t feel at peace with the experience. I wanted to speak up and educate further, so I asked the Human Resources representative if I could train their store managers on the ADA. She agreed and in the weeks leading up to my presentation I read and studied extensively. I learned as much as I could about all aspects of the law so that I could present clearly and answer questions confidently.

Being told to leave the store because I had a guide dog became an empowering reference point for which I am grateful. I am not grateful for the sting of blatant discrimination. I do not want anyone to be denied access anywhere or at any time because they have a guide dog. However, I am grateful for the advocacy skills I gained from this experience. I have carried them with me to use, for the many times since then when I have been put in a position of speaking up for myself and other individuals. This experience shifted my mindset into one of an advocate, and for that I am grateful.

In the past 18 years, I have had many opportunities to advocate and educate about the Americans With Disabilities Act. Unfortunately, many of these times have been after being denied access — to a taxi cab, a major women’s clothing store, a major airline, and other situations where it might be easier to simply move on. But I reflect on this first experience and how it taught me the importance of assertively speaking up and educating. I could have left that store feeling frustrated, not shopped there again, and left it at that. I learned that I needed to speak up, not only for myself but for all those who may enter that store after me. I take the time to educate and advocate so others won’t have to go through the same thing.

On a chilly March evening in 1998, standing outside of the grocery store waiting for the police to arrive, I found my voice. I am thankful for how this experience taught me that lemonade can come from lemons. Through one uneducated store manager, a large group of managers were educated. My voice matters and can make a difference.

We want to hear your story. Become a Mighty contributor here.

3k
3k
JOIN THE CONVERSATION

What My Prosthetic Eye Helped Me See About Being Different

3
3

As a child, I was extremely aware of the fact that I was, well… different. I was 3 months old when the doctors diagnosed me as having micropthalmia with blindness. Micropthalmia literally means “small eye.”  In my case, my left eye was smaller than the right. Along with this, the optic nerve that branches out from the brain failed to properly form to my left eye. My mother, a nurse, knew early on that something was different. If she entered my room to wake me in the morning, she would have to sing or talk to me so she wouldn’t startle me.

When I was 5 years old, I underwent what I thought was the most traumatic experience of my life. My parents took me to our ophthalmologist, who inserted a cold object that fit like a large, thick contact lens over my left eye. This was an eye prosthetic known as a scleral shell. Five-year-old me thought the eye prosthesis would magically fix what wasn’t right and I would be able to see out of both eyes like other kids. I was horribly disappointed.

My first eye prosthesis was a manufactured one that seemed only to exacerbate my feelings of being different. I eventually outgrew it, and it would be years before my parents and I learned that patients like me would need to replace an eye prosthesis every five years until I was finished growing. To make matters worse, the iris of this eye prosthetic didn’t match the color of my right iris, making it look as if I had one smaller, different-colored eye. I was the target of brutal bullying for years.

Eventually, we met a doctor in the D.C. metro area who was an ocularist. I read an article about him in a newspaper, and my parents and I were so impressed that we made an appointment to see him. An ocularist is someone with a special knowledge of eyes and eye shape, and the bone structures of the face. They also have an artistic background, so they understand color. Instead of a manufactured eye, I got a custom-made prosthetic that matched the other eye and fit much better. It boosted my confidence immensely.

Over the years I have had quite a few eye prosthetics, and I have found means of coping with the feeling of being different from others. I have realized that we are all different, and there really is no such thing as normal. I also learned about the healing power of humor. They say laughter is the best medicine, and for me that was true. I have a knack for jokes and sarcasm, so once I started making people laugh with me instead of at me, it broke down many of the invisible barriers that had once kept me isolated. I learned to turn a blind eye (get it?) to negativity and to keep an eye on the positive things in life (pun intended.)

I try to help others see that it’s OK to be different, and I welcome questions about my eye prosthetic and being blind in one eye. By being open and honest and accepting myself, I am hopefully allowing for others to be more open as well. Knowledge is power.

We want to hear your story. Become a Mighty contributor here.

3
3
JOIN THE CONVERSATION

Real People. Real Stories.

7,000
CONTRIBUTORS
150 Million
READERS

We face disability, disease and mental illness together.