I Lost My Sight at 15 but Came Out on Top

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I often find myself replaying everything I have been through in the past four years. I used to have low vision in my right eye, 20/200, and was fully blind in my left eye. I read large print and didn’t use a white cane. I managed very well that way. My twin sister and I were born three months early but I have no other medical issues besides my eyes. Of course, it had its struggles, but I had never known any different so it was the way of life for me — until my retina detached in my good eye when I was 14 years old. That was the most heartbreaking moment of my life! It was never a risk, so when we found out that it had in fact detached and that was why my vision had become blurry, it was the most shocking moment I had ever been through.

I had eight surgeries in the span of six months to reattach my retina, including cataract surgery. I lost all of my sight a month after my and my twin sister’s 15th birthday. I had to learn how to use a white cane, how to use specialized technology, and had to adapt my entire way of life. There was so much going on at once — I went back and forth to the city where I had the surgeries every two weeks, then every four weeks, back to two, then every six and then back to two. It seemed like it would never end. It was a six-hour drive from my small town, and every trip was so exhausting. I never knew if it was just going to be a check-up or another surgery.

I can’t even begin to describe the emotions that were running through me — fear, hurt, sadness, anger, shock, hope, worry and so many more. Going from low vision to fully and permanently blind might not seem like that big of a jump, but trust me, it was by far the hardest thing I had ever ever had to cope with. It wasn’t just having to learn a completely new way of life. It was having to deal with the emotions that go through you every day. It was trying to figure out just how you were going to deal with it day to day. It was having to carry the burden of pity. It was seeing your family learn to deal with how to help you and their own sense of hurt at not being able to stop it.

Somehow I came out on top. I learned how to deal with everything that had been thrown at me with no warning. I sometimes can’t believe how I came through it all the way that I did. I came out stronger, braver and proud! The help and support from my family and friends is something I will be forever grateful for. They all helped me in ways I will never ever forget, whether it was showing me how to do things in new ways, standing by my side through it all, or the simple words that helped me get through the day. I will always remember my big brother saying to me, “If you ever need anything, you know I am always here for you.” He meant every single word and those few words will forever stay with me.

Yes, there are days when I don’t want to leave my bed because I can’t bear having to deal with it, but I somehow keep pushing on. Perhaps it’s my stubborn, spitfire personality that makes me keep pushing on; I dont know. There are also days when I am so proud of what I have accomplished and nothing is going to get in the way of what I want. Even though what I have been through is life-changing, there are other people who have it much worse then I do. Yes, what I have been through was beyond difficult, but I made it through, and that is something I will always smile about because if I can go through that and come out perfectly fine, I can do anything!

For others who have gone through similar situations, I would like them to know that, yes this was by far the hardest thing I have ever had to go through, but there are still other people who have it worse. You can make it through whatever losing your sight decides to throw at you. Just take all the check-ups, surgeries, eye drops, eye pressure tests, bright lights, the pain — take it all in stride because you can get through this and you will come out a stronger, braver, happier person. Yes, happier, because when you look back at what you have gone through you will learn that coming out of it made you realize all the little  things in your life are the things that will always make you happy.

Also, I encourage everyone who has gone through something like this to not fight the white cane or the specialized technology. Embrace it because as scary as it seems, it is such a huge relief in the end because it makes you so much more independent. I hated having to depend  on my friends and family all the time, so learning how to use those things made me feel better and gave me that confidence I needed to move on with my life. I know that anyone who goes through this will be able to do that, too.

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To My Mom, Whose Life Changed as Much As Mine From My Ill Health

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There are no pictures of my mother and me up on the walls of our house. The truth is, my father’s life and death can be condensed into a story in my mind, but my mother’s presence and influence in my life is much more complicated.

My mother is a poetic intellectual who believes in choices and who has supported me endlessly through, oftentimes, seemingly strange decisions. To give an example, some years ago I asked to go back to university in the U.K. newly blind, living alone in a new house and on monthly chemotherapy pulses. My mother did not even blink. She flew with me to the U.K. and left me crying and petrified on a train platform, unsure I even knew how to get home. She must have been terrified when she got on that train. I knew that then, too, but now as a parent myself I get chills even thinking about it. But she respected my choice and loved me enough to allow me the freedom of it.

By the end of that year I was confident and knowledgeable enough to be able to take a train and boat by myself and cross Europe, blind and on chemo. The following year I couldn’t walk and was in a wheelchair. She drove me, a cane, a wheelchair and my dog single-handedly through Europe to take me back to my house in the UK. Then she drove back home.

Five years ago I confessed to her I wouldn’t be able to live by myself anymore, that my medical reality was such that I needed help to live a semi-independent life. In response, she packed up all her things, a lifetime of things, left the only country she’s ever known and all her friends and life, and moved across the continent so I could have a shot at the life I chose.

The day I found out I was pregnant with my daughter Dot, my mother was in the house with me. When the test turned positive I screamed for her, frozen about all the unknowns and risks a pregnancy would bring. She was outside the room with a good friend of ours when I was giving birth, through those five days and nights that went so very wrong. She was next to me in the operating room and while I hemorrhaged, my blood pressure crashed and doctors were panicking, she was the first person to hold my daughter. In that operating room, when the doctor handed Dot to her, she sang a lullaby while she held her so the first sound in Dot’s life would be joyous.

I can never undo the deep sorrow she feels for my medical situation and for Dot’s. The only thing I can do is try as hard as I can to honor her, her love and her sacrifice. And love her. And learn from her and the complexities of her character and spirit.

So today and every day, I am so deeply grateful for my mother’s presence and example in my life.

mom hugging young daughter

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What I’ll Say the Next Time Someone Asks If I Know Stevie Wonder Because I’m Blind

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The 58th Annual Grammy Awards was held in Los Angeles on February 15, 2016. Artists representing every genre of music packed the Staples Center as fans from all over the country watched for performances and fashion alike.

With so many losses felt within the music community since the beginning of the year, Stevie Wonder and Penatonix honored Earth, Wind & Fire’s Maurice White with an emotional performance of “That’s the Way of the World.” Wonder, who became blind shortly after birth, then preceded to remain on stage as Penatonix members read the Grammy nominees for “Song of the Year.”

After video played, the camera cut back to Stevie Wonder, who was holding the winner’s card. As he began to fumble with the card, attempting to open its seal, Wonder murmured, “So, I’m gonna break this open, pop it open… you know, what the hell?” The audience laughed while Penatonix members awkwardly looked on, seemingly wondering if they should intervene or let the music icon continue to open the envelope.

Wonder quickly attained success and upon turning the card towards the audience, it appeared to be blank.

“OK, so you all can’t read this huh? You can’t read it; you can’t read Braille. Nah, Nah, Nah, Nah Nah.”

The audience erupted with laughter. Stevie, glided his fingers over the dots adding, “I just want to say before saying the winner, that we need to make every single thing accessible to every single person with a disability.” The audience applauded Wonder as Ed Sheeran took home the win for his song, “Thinking Out Loud.”

As a blind woman, I’ve had a love-hate relationship with Stevie Wonder since losing my vision in 2012. As one of the most famous blind people in the entertainment world, people often say say to me, “Oh, I can name a blind person, (pause) Stevie Wonder.”

I also get asked, “Do ‘you’ know Stevie Wonder?”

Know him? Of course I know who he is. I’ve heard his music. Are we going out to dinner or texting each other daily? In a word… no.

Surprising as it may sound, not all blind people hang out together. We exist in this world. We participate in our communities, and if we do happen to encounter a fellow individual with a visual impairment, then yeah, we compare notes. Maybe we swap numbers, similar to sighted people when they meet someone who shares a similar interest.

I know enough about Stevie Wonder to expect a great performance, but I was equally surprised by the Grammys’ choice to have him hold the winner’s card. Even as a blind woman, I was thinking, “Man, is somebody going to help him with that envelope?” and “How is he going to read that thing?”

Well, Stevie showed me. Hell, he showed the entire musical community. A blind man read and announced a Grammy winner.

He didn’t need assistance. He didn’t require a sighted person to do the job. He just did it. Elegantly. Professionally. Perfectly.

But beyond that, Stevie Wonder lightheartedly used the opportunity, perhaps even unbeknownst to him, to educate the world about “inclusion.”

We need to make every singe thing accessible to every single person with a disability.”

Inclusion for all, whether it’s the blind celebrity announcing the Grammy winner or the autistic child looking for matriculated classes in their school. The disabled community craves accessibility. We sometimes require accommodation. But we all, disabled or not, want inclusion.

The next time someone asks me if I “know” Stevie Wonder, I won’t be frustrated by their innocent ignorance.  Instead, I will proudly say, “Yes, he’s the guy who killed it at the 2016 Grammys by showing the world how accessibility for the disabled community is so empowering.”

Related Story: Stevie Wonder Calls for Disability Accessibility in Grammys Speech

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To the Girl With a Visual Impairment Who Is Self-Conscious About Using Her Cane

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“Excuse me, are you training that dog, or is she yours?” came a woman’s voice from my right side, a few seats over in the crowded airport terminal.

“No, she’s mine,” I replied, “I’m legally blind.”

“Oh, well you look so confident that I just assumed you were a trainer.”

I sat up straighter and smiled. I liked this woman. “Oh, thanks!” I said.

“I have my daughter sitting here next to me. She just turned 18 and has been talking to Guide Dogs for the Blind about applying for a guide.”

“Oh, wow, that’s great!” I beamed. “You will love working with GDB!”

The mother’s voice dropped a notch.

“Admissions at GDB told her she needs to be using her cane more often in order to get a guide dog, and she really hates using it despite all her mobility training and the fact that glaucoma is causing her vision to get worse and worse.”

I turned my attention to the young woman sitting next to her mom. I couldn’t tell if she was very small for her age or if she was just crouched so low in her seat that it created the illusion of a very small person.

“I used to have a love-hate relationship with my cane as well. Can I ask why you don’t like using yours?”

She lifted up her head and a small voice replied. “I feel like everyone is watching me. I don’t like people looking at me.”

Our boarding call suddenly came over the speaker, and my husband nudged me. I knew we needed to get on the plane if we wanted any chance of getting bulkhead seating.

“I know you need to be going,” the mother said hurriedly, “but can you just tell us if you like having a dog and if she’s made a difference for you?”

“Definitely. I feel like I can walk so quickly and confidently, and my trainers at GDB were amazing. You should definitely go for it!”

As our plane took off, I couldn’t stop thinking about this teenage girl and everything I didn’t have time to say to her, and how I wished I would have responded to her comment about everyone watching her when she uses her cane. Why hadn’t I thought to give her my email address or phone number?

That flight was months ago, and I still can’t stop thinking about this 18-year-old. Maybe it was her timid voice. Maybe it was the way she seemed to make herself smaller. Maybe it was the worry in her voice about what others think of her. Maybe it was the familiarity of it all, a reminder of an old way of thinking that once shrunk my world.

Whatever it was, it prompted me to compose this letter to her, and to anyone in similar shoes.

Dear beautiful young woman, crouched low in your seat,

I know it can sometimes feel like everyone is watching you, especially when you’re holding a long white cane in front of you. And with limited sight, I know it’s easy to imagine that all eyes are on you.

After years of worrying about the exact same thing, here’s what I’ve discovered: No one is looking at you as much as you imagine they are.

It is true that some people may give you an extra glance, but in reality most bystanders are so consumed with their own thoughts and plans they aren’t even giving you and your cane a second thought (and the few that are have far too much time on their hands).

Whether you realize it or not, beyond your self-conscious exterior is a human being who is strong and confident. The one thing I wish I’d learned sooner in my life is it’s OK to allow this strong, confident person to show up in the world.

The world needs you. It needs your presence. It needs your strength. It needs your story. It needs the uniqueness that only you can bring.

The time and energy that is freed up when you are not preoccupied with what others think of you is astounding. I am not going to lie and say I never worry about what people think of me anymore, and I admit I occasionally get treated differently when using my cane or guide dog. But these are now secondary thoughts in my mind. My primary thoughts are concerned with what I can offer in this life.

And the beautiful thing about offering up yourself to the world is the world gives back. It gives back beauty. It gives back grace. It gives back strength.  Whatever you give, you will receive in some form.

So go out into the world with your head held high today, my young friend, and show us what you have to offer — because your disability does not define you. It is a mere shadow, cast gently by your side from the light that illuminates from a beautiful human being. You have more to offer than you can possibly imagine.  So go. The world is waiting.

Sincerely,

Someone who has been there

joy thomas and dog
Joy and her dog, Roja.

Follow this journey on Double Vision Blog.

The Mighty is asking the following: Share a conversation you’ve had that changed the way you think about disability, disease or mental illness. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

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7 Awkward Situations I've Been Put Into as a Legally Blind Person

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When people learn I’m legally blind, assumptions are made — for example, that I’m completely/totally blind, which I’m not. Then I have to explain the situation to a complete stranger in the line at Starbucks or something like that. So here are the seven most awkward situations I can recall:

1. “What does she want?”

Oh, this question. It has been asked to my grandma, friends, boyfriends, everyone. Picture this: I’m sitting in a casual restaurant, glancing over the menu. I’m holding it probably less than three inches from my face. The waiter/waitress walks over to my table and looks at me pityingly. Then, they look over to whoever I’m currently dining with and asks, “What does she want?” as if I cannot speak. Then my grandma responds with the grand ol’, “I don’t know, why don’t you ask her?” and I have to reply with “Oh, sorry. I have a vision problem, but I can order for myself. Oh, and I’d like the filet mignon, please.”

2. “Do you know sign language?”

A boy from my school bus asked me this. “Did you mean Braille? In that case, no. I can read print if it’s large enough,” I reply. At this point, I receive the most confused look ever. “But I thought you were blind.” I spend the next five minutes explaining that I am not blind, but I have a visual impairment. This means I can see. I also had to explain the difference between sign language and Braille to him.

woman with a single braid wearing a white t-shirt and sunglasses

3. “Betcha don’t know how many fingers I’m holding up!”

I hate this question, and you would never believe how many times it’s been asked to me. I was just minding my own business, using my video magnifier to enlarge my notes in an American Lit class, when a fellow classmate walks over. Oh gosh, it’s the class clown. Keep walking, keep walking, I think. But nope, he stops right in front of my desk, sneers and holds two fingers so close to my face, I could tell you what he ate for lunch two days beforehand. “Betcha don’t know how many fingers I’m holding up!” When everyone starts staring, he felt the need to say, “Well, she’s blind so…” Then I had to explain once again that I’m not blind, and that he was in fact holding up two fingers.

4. “Here, _______. Do this for her.”

I’m right here, and I can hear everything you’re saying. Maybe instead of asking my friend to fill out a paper for me or cut something out for a project, quietly ask me if I am able to see well enough to complete the task myself. I’ll usually say yes. However, if I don’t say yes, I’ll politely ask you for help. Then, it is completely acceptable to get a friend or someone else I trust to assist me. Or you can ask how you could make the task easier for me. I could always give a suggestion. I like to be independent, and it really hurts my feelings when people make the assumption that I cannot do things for myself. Also, it’s quite embarrassing when you ask a random person to do something for me. Therefore, just ask me. I don’t bite most of the time!

5. “Stop, you’ll hurt yourself!”

I have a visual impairment (which is a disability), but I don’t recall taping a “fragile: please handle with care” sticker to my forehead. I will not break, I promise. I am comfortable with my abilities, or lack thereof, and I know my limits better than anyone else. Accidents can happen to anyone, including me. But please don’t make a mountain out of a molehill regarding my visual impairment.

6. “If you hold that phone so close, you’re gonna go blind!”

I was in the line at Starbucks, glancing over the menu on my phone so I could be fully prepared when the barista asked for my order (darn you, social anxiety). The woman behind me snickers. I turned around, hoping to see something pretty funny, but she was looking my way. I turned back behind me, completely confused. She then said, “If you hold that phone so close, you’re gonna go blind!” Then she went back to looking at the pastries, as if nothing happened. I didn’t want to say anything, but something in me began talking anyway. “I have a problem seeing things far away, so I do hold my phone a bit closer. Sorry if it’s bothering you.” Then we had to stand in line silently for the next three minutes until I could order my Grande White Chocolate Mocha Frappuccino and leave. Can we say awkward?

7. “I’m pretty sure that’s $10.”

This was possibly the most uncomfortable situation ever when it happened, but it’s funny to me now. I walked into the Dollar Store to buy a birthday card for my cousin, and I was just getting ready to pay when the cashier saw me having a hard time with my money, struggling to read the numbers on the bills. I finally handed him a $20 bill. I waited for my $17 and change back when he hands me $7 instead. “Excuse me, but I gave you a 20.” He looks absolutely disgusted. “I’m pretty sure that’s $10,” he says. I had no idea what to say.

Thank goodness a lady I knew from church was behind me in line. She proceeded to tell him how rude it was to take advantage of someone who couldn’t see. She literally made me cry, right there in the checkout line, because I was so happy someone had stuck up for me.

As you can see, many misconceptions and generalizations are made about someone with a visual impairment — or any disability for that matter. However, I believe you have to make the best of the bad situations and see the humor in it. The moral of this story is: (a) things aren’t always as they seem, and (b) don’t buy birthday cards from the Dollar Store.

The Mighty is asking the following: Create a list-style story of your choice in regards to disability, disease or illness. It can be lighthearted and funny or more serious — whatever inspires you. Be sure to include at least one intro paragraph for your list. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

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To My 13-Year-Old Self After Losing Sight in One Eye

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Dear 13-year-old self,

Hi, Olivia. I know you are not going through an easy time right now. You were just discharged from the hospital after a devastating car accident. Right now you are adjusting to living with vision in only one eye, still waiting for the medication to do its job and optimistic that the doctors will come back with the news you are hoping for: that the vision will come back.

I am sorry to tell you this, but it won’t. It is gone forever. I know that is devastating to hear. I know how much it hurt to learn that. I know the anger that is growing inside you to mask your grief at the realization that you may never feel “whole” again.

To the rest of the world, you have rebounded spectacularly. You left the hospital and jumped right back into life, as if nothing even happened — as if the moment that will define the rest of your life never happened. And yes, I am sure you are shaking your head right now, but I promise you that accident has set a new course for your entire life.

I am not surprised you are coping so well. That is the undeniable positivity in you, that resilience I am so proud of. I know what’s going to happen now. You are going to continue on like nothing ever happened. “So I lost my vision in one eye. I still have another one,” you will say to yourself over and over again. “I will not allow this to affect my life in any way. I will never let it stop me from becoming who I want to be” will become your mantra.

As the next few years pass, you are going to attract more attention than you would like.
People are going to ask you uncomfortable questions; some are going to say hurtful things. I want you to know they are not intending to upset you, they just don’t understand, but I know they still will.

You want to be strong, so you are going to bury the growing pain you feel deep inside yourself. You are going to think if you push it down far enough, then it won’t affect you. It will be like the accident never happened. Even though it seems like the perfect plan, unfortunately, I have to tell you it is going to fail. 

By burying the accident, the trauma and the pain, you will unintentionally bury
the other feelings you possess — joy, hope, love, passion and enthusiasm. Even that positive attitude will slowly fade away. That anger you felt when you first heard the news your vision will never return will dominate your mind. Soon it will become the only emotion you will be able to express.

I don’t want to give away too much about what is to come, because there are mistakes
you are going to make. There are people you are going to hurt. You are going to make decisions you will regret, but all of these will bring you to where I am now. That is who I am: you, 11 years later. These choices and mistakes are things that need to happen in order for you to learn and grow. However, there are a few things I do want to tell you, just things to keep in mind and be aware of.

I know you don’t want to talk to Mom and Dad about the accident, and trust me, I understand. You don’t want to upset them. You don’t think they want to talk about it, but they do. They don’t know anything is wrong. They don’t know the pain you are experiencing, because on the outside you still look remarkably fine. I know this isn’t an easy request, but try to talk to them. They want to hear what you have to say. They want to know what you are feeling. They want to help. No one is ever going to know anything is wrong if you don’t ask for help.

But you need to ask for help.

In doing so, you will start a personal transformation that will leave you a better person
and a more complete person than you could ever imagine being.

Life isn’t going to be a breeze for you. The next decade is going to be hard. You are going to feel like no one else on this planet understands your suffering.

But you have to keep fighting. There are days you are going to feel weak, but you need to know you are strong. There are going to be days you feel worthless, but I promise you matter to so many people. There are going to be days when you feel hopeless, but even though it might seem far off in the distance, I promise you there is a silver lining and you will reach it because that’s what you do — you survive.

But the most important thing you need to know is that surviving is not enough. You
need to live. Surviving is merely existing. It gets you along but it doesn’t quench your determination or fuel your passion. That is what living does, and I promise you will learn to do that, too. Just give it some time.

You are going to be OK.

Sincerely,

You at 24

The Mighty is asking the following: Write a letter to yourself on the day of the diagnosis. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

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