8 Things I Wish People Understood About My Vision Loss

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1. It usually occurs slowly. 

While some people can go blind overnight or in a matter of days, many people with degenerative diseases, such as retinitis pigmentosa (RP) and macular degeneration, lose their sight gradually over a period of many years.

2. Just because our vision changes doesn’t necessarily mean our interests do.

Some people may assume that certain hobbies that are sight-related, such as sports, fashion, makeup and woodworking, might no longer be interesting or feasible after vision loss. This often simply isn’t true.

I feel there’s nothing worse than a group of friends assuming you no longer want to go on your annual bike-riding trip, aren’t interested in watching a football game together or don’t enjoy shopping with them anymore. Yes, some things may change, such as needing to use a tandem bicycle, a tether for running side-by-side or audio descriptions for movies, but these activities can still be very fun.

There are most always ways to compensate and adapt when it comes to the activities we love. I have a friend who is completely blind from RP and recently refinished his basement alongside his son, even handcrafting a beautiful wet bar, all without sight. I’ve heard of auto mechanics who can no longer drive but still find ways to work on cars. When someone has a talent or an interest, they often find a way to continue doing it.

3. It can feel socially isolating.

Think of all the social interactions you use your vision for, from greeting your neighbor across the way to commenting on someone’s clothing. From college students bonding over late-night activities around campus to parents observing their kids’ soccer games, some of these experiences can feel a bit awkward for people losing their vision.

While we can still participate in many of the same activities, some of the commentary involved in a shared visual experience can be missed. Sometimes I feel like I have to fake “ooh-ing” and “aw-ing” over that cute or funny scene everyone is pointing at, lest I feel out of the loop. We often can’t dart from person to person at a party, spotting friends across the room.

Some of this is unavoidable, but friends and family who go out of their way in social settings can make a huge difference. Even when I can’t spot you in public, I still appreciate being acknowledged and greeted.

For example, I love it when a parent of someone in my daughter’s kindergarten class comes up to me in the grocery store and tells me who they are, even if I’ve met them before, and starts a conversation. I can’t stand it when someone tells me, after the fact, that they were near me in a public setting — “Oh, I saw you at the movie theater last week!” — but didn’t make their presence known at the time.

It’s a weird feeling when people can spot you, but you’re not able to see them. It can leave you feeling self-conscious and awkward. When someone passes me and just says, “Hi, Joy!” without identifying themselves, I sometimes spend the next 10 minutes trying to figure out who it was.

On the flip side, when someone says, “Hi, Joy, it’s Lindsay!” I can ask how her daughter is or spout off a relevant comment.

4. The things we can and can’t see can sometimes be confusing, even for us.

I can’t always explain why I can’t figure out what a picture that someone texts me is, but I can read the print caption that goes along with the photo. Perhaps it has something to do with the visual memory of letters and how my brain fills in the gaps, even when parts of those letters are missing. Or maybe it’s the contrast or the size and color of the photo that makes a difference. Whatever it is, it can be difficult to explain to people and could even appear phony, like I have “selective sight,” but anyone who knows me well understands and doesn’t give it a second thought.

My younger sister, who works on a cruise ship, overheard one of her co-workers complaining about a passenger who had requested vision-related assistance but then appeared to be looking at something. The co-worker assumed the person was lying about their poor eyesight, but my sister grew up watching her two older twin sisters with vision loss and quickly told her co-worker the passenger might need help seeing some things but not others.

Vision loss isn’t always a concrete, black and white picture for people losing their sight. Take colors for example. I can identify most colors in a general sense but often can’t distinguish between blue and green, red and orange, purple and brown or even between yellow and white.

5. We can have “bad” and “good” vision days.

Sometimes it depends on how sunny or cloudy it is outside. Other times it depends on eye strain, the time of day, lighting inside versus outside and even how many trees or landscaping are around casting shadows, causing my eyes to play lots of tricks on me.

6. It’s not something I dwell on daily.

Gradual degeneration is a lot like aging. You don’t look in the mirror every single day, inspecting every new wrinkle, exclaiming, “I’m getting older!” — just like I don’t stare at eye charts constantly, noticing every little change.

Also similar to aging, most people don’t just wake up one day and realize they’re a senior citizen. You realize you’re aging at various points in your life, sometimes because of an event such as a milestone birthday, but other times you just notice yourself looking or feeling older from time to time.

Typically, vision loss is similar for me. There are times I’ve gone to the eye doctor and have been surprised at my change in vision because I hadn’t noticed it happening to the extent that it dropped, despite the fact that I could tell it was worsening. Other times, I notice the drop and am not surprised in the least when the ophthalmologist shows me my test results.

7. Some of us use mobility aids like canes and dogs, and some of us don’t.

There can be people who have the exact same vision who move about the world completely differently. There can be two people who both have 19 degrees of vision, deeming them both “legally” blind, and one of them uses a white cane while the other walks around without any mobility tool. If there is someone in your life who you feel should be using a mobility assistance but doesn’t, it’s usually a realization they need to come to on their own.

Even among those who are completely blind, not everyone uses a cane or dog. Some, for example, use echolocation. It’s a personal preference. A common misconception when someone begins using a cane is that they just had a major drop in their vision. Sometimes this is the case, but sometimes the person may just be sick of tripping over things and is ready for some help.

8. Most of us lead regular, happy lives.

After doing a presentation about my vision at my niece’s school recently, a couple of her classmates came up to her at recess and said, “We feel so bad for your aunt! It’s so sad, and we almost cried during her talk!”

Hearing this made me feel like I didn’t really do a great job conveying how much I love my life during my presentation. It made me decide to start my school presentations by telling the kids to smile and laugh because my story is not a sad one. Yes, I have dealt with my share of sadness over having RP, but sadness is definitely not the word that comes up for me when thinking about my life. Challenge? Sure. Adventure? Yep. Fringe benefits? Yes, please. Joy? Absolutely.

When you’re done crying over RP, there are so many things to laugh at. For example, on a recent trip to Chicago, I reached out to press the crosswalk signal button and began pressing on a man’s arm instead, much to his surprise. You can’t tell me that’s not funny!

I think Helen Keller sums it up best: “I can see, and that is why I can be happy, in what you call the dark, but which to me is golden.”

Editor’s note: Any medical information included is based on a personal experience. For questions or concerns regarding health, please consult a doctor or medical professional.

Follow this journey on Double Vision Blog.

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.

Lead photo source: Thinkstock Images

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When a Helper Becomes an Over-Helper for Your Disability

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If you or a loved one has a disability, you’ve probably encountered many wonderful, helpful people. You’ve probably also encountered some, shall we say, overly helpful folks?

Being legally blind, I usually have no shortage of helpers while out in public with my cane or guide dog. “Can I get that door for you?” “Can I grab some silverware from the buffet for you?” “May I assist you with reading that menu?” 

Most of these are what I’d consider helpful gestures, and I sometimes take people up on their offers if my hands are full juggling children and leashes, and other times I politely decline the offer, and all is well. But once in awhile, I find myself in a code red situation.

Like a couple weeks ago at yoga. I was attending a class with an absolutely amazing teacher at a studio I practice at regularly. I arrived two minutes before class was starting, which really isn’t ideal when you have a guide dog to get situated, a mat to roll out and yoga props to gather. To make matters more challenging, the tiny room was packed with people.

woman doing yoga next to her service dog
Joy and her guide dog, Roja.

Upon our arrival, everyone began maneuvering themselves around to make room for us, and a couple of my classmates who know me well offered to grab my props while I got situated.

“Oh my gosh, thank you!” I breathed a sigh of relief. Just then a voice popped up next to me.

“Hi, I’m Marcy and I went ahead and folded your blanket and put your water bottle at 2 o’clock. I also took your dog’s leash and tucked it behind her because I didn’t want it to get in your way.”

“Oh, thanks. Nice to meet you,” I stammered, slightly taken aback that she had touched my things without asking. I try to give people the benefit of the doubt, however, so maybe she just saw others being helpful and thought she’d do the same. I got into child’s pose and hoped for the best.

“Today, we’re going to start with a gentle twist,” stated Greg, our instructor, “Begin by crossing your right leg over…”

“Here, like this!” Marcy interrupted loudly, touching my right leg. “Put that leg over the other one and wrap it around.”

Twists usually are confusing for me, but I eventually figure it out. Apparently I wasn’t getting into the pose fast enough for Marcy.

I quickly got into the correct twist position, but then missed Greg’s next pose while Marcy was loudly instructing me, and I couldn’t see what pose Greg was moving into.

“We are on all fours now!” Marcy didn’t excel at whispering.

Oh, table pose. I knew that one. “Now we’re going to go into a gentle downward dog,” Greg continued. Oh good, I know how to do that well, but I usually like to do a cat/cow or two before getting into my down dog. Greg always encourages his students to listen to what their bodies are telling them to do, so I make slight variations and add in poses at times.

“Downward dog is where you…” Marcy began. She was not OK with variations.

“Yeah, I know,” I whispered, trying to get back into my yoga zone as I moved fluidly into my down dog. There, now Marcy could see that I knew what I was doing.

But her little “helpful” interjections continued. I found myself trying to speed quickly into each pose for fear that Marcy would loudly offer her assistance if I didn’t high-tail it into warrior I. Occasionally, instructors come around and readjust students, and I really don’t mind when they adjust me or give reminders. They are, after all, the instructors, and most do it in a way that still honors the individual practice. But Marcy was not only not honoring my practice, she was missing out on her own.

“Remember to play with these poses and have fun,” Greg told our class gently. “It’s your own, individual practice, so try to go inward and sense what your body needs.”

Yo, Marcy, he’s talking to you.

But Marcy was too busy observing my wounded warrior to listen to Greg’s gentle reminder.

I, too, was having trouble focusing. All I could think about was how pushy Marcy was with her help. And the feelings it brought up were very familiar to me. It didn’t feel like Marcy’s help was about me at all. The whole thing felt like it was very much about her need to be a helper.

Marcy had a need to be needed, and it seemed I was filling that need perfectly.

I’d like to say I came up with some catch-all, perfect phrase to get Marcy off my case (or, more specifically, off my mat), but I couldn’t quite stop in the middle of class to hold an intervention. If I was going to enjoy the rest of my yoga class, I knew I needed to do what the mighty yogis teach: Be mindful and ignore the chatter. Not just Marcy’s outward chatter, but the conversation going on in my mind about Marcy and her need to help.

I began to listen only to the calming music playing through Greg’s iPod. I closed my eyes and listened to his instructions, and when Marcy would start doing her thing, I simply focused entirely on my breath and tuned her out. I didn’t whisper thank you. I just inhaled and exhaled. And you know what? After awhile, I didn’t have to ignore anything because Marcy had ceased her chatter.

I think there is a time to confront and be straightforward with people. But I also think there is a time to be quiet and remember that their issue with over-helping has nothing to do with you. It may be about them, and sometimes you need to allow them the space to figure it out on their own. After all, isn’t that what you want from them?

Thank you, Marcy, for teaching me an important lesson. Namasté.

Follow this journey on Double Vision Blog.

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When My Blind Son Turned 16 But Couldn’t Get a Driver’s License

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Two of my three kids, my boys, are blind. They read Braille and use white canes. My oldest son, Michael, just turned 16 and all of his friends are turning 16 as well… and all of their birthday celebrations include trips to the DMV for their learner’s permits and eventually — cue the dramatic celebratory music — the driver’s license.

But not Michael. Although this isn’t the first time his blindness has interfered with something other kids get do, it is the first time I can’t find a way to adapt the situation. I can’t find a creative solution to get him (safely) behind the wheel. I can’t tap into my arsenal of resources I have gathered in the 16 years I have been a parent of blind children that would connect him to driving. Nope, I cannot change the fact that his sixteenth birthday will not include posting a picture on Facebook of him with a big smile sitting in the driver’s seat. And I can’t change the fact that he is really bummed about it.

However, what I can do is create a lasting memory of his sixteenth birthday that will be so epic, so very meaningful to Michael, that he’ll hopefully forget all about this birthday’s connection to driving. And that’s just what I did — with quite a bit of help.

My son is a musician — the kind of musician who cannot go a day without banging out a few tunes on the keyboard and can’t walk past a piano without tickling the ivories. He is the keyboardist for his band, Casual Friday, and he mentors younger kids on performing rock music. If there is a piano in a building, Michael will find it, and when he starts playing, people are drawn to him. Lucky for me, Michael’s favorite music genre is classic rock (it’s my favorite, too!), and while he loves to play and sing his favorite tunes, he really loves experiencing live music performed by his favorite bands. He loves going to different concert venues and performance halls. He loves to take in the sound and feel the energy of the crowd, and sometimes he can even see some of the light shows the bands put on if the seats are just right.

One of Michael’s all-time favorite artists is Billy Joel. Back in November, I found out that Madison Square Garden was adding a Billy Joel show in February (New York City is easily accessible from our home). When I heard that, I immediately wrote to a wonderful foundation I learned about when I attended the National Organization for Rare Disorders summit back in the fall. This organization, Do It For The Love Foundation (DIFTL), connects kids living with challenges to their dream concert experiences, so I applied to have them connect Michael to Billy Joel. A few weeks ago, I got the great news: DIFTL was sending Michael to the concert — and they had backstage passes for him as well!

No sooner was that dream experience confirmed, another favorite artist of Michael’s, Bruce Springsteen, announced that he was adding a Philadelphia show to his tour. The Springsteen concert was at the Wells Fargo Center on the Friday night before Billy Joel. Wait, there’s more. Another one of Michael’s favorite artists is Bryan Adams — and he was performing at a new venue in Philly, The Fillmore, on Monday right after the Billy Joel date! In a four-day stretch, all three would be in or near our hometown. To top it all off, that weekend was also a four-day weekend for our school district, so Michael was off school on Friday and Monday.

three boys under giant balloons
Michael (center) showing off his birthday gift.

The epic plan: Take Michael to all three concerts! Instead of shopping for cars and comparing auto insurance plans, my husband and I worked out the logistics of getting him to three different venues in four days’ time. It wasn’t easy, but it was so worth it — you can imagine how overwhelmingly excited he was to find out the great news on the eve of his sixteenth birthday. He was blasting all three artists’ albums for days with a nonstop, ear-to-ear smile.

Michael still cannot get his driver’s license. However, instead of focusing on the lack of opportunity for him to drive or fixating on how blindness just sucks sometimes, I did what I have learned to do, what being Michael’s mom has taught me to do: Find a different way to make something memorable and meaningful for him. Music is a huge part of what makes Michael Michael. His heart beats in tempo with his positive, fun-natured attitude. He might not be able to have a license to drive, but he certainly has a license to rock — and rock is what he will do!

Follow this journey at Eye Believe in Miracles.

The Mighty is asking the following: Tell a story about a time someone helped you and/or your child when you needed it most. 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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My Ride With an Uber Driver Who Was Hard of Hearing

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Today was like any day at work. Busy and eventful, not to mention exhausting.

Typically, I have to take buses everywhere I go, and being legally blind turns a 20-minute drive home into a three-hour bus ride most days, even more so with the local highway under construction.

So when I have extra money, I Uber it.

I went to an area where I could hail myself a ride, and when I went to request one on my phone, I came across this pop up that informed me my driver was hard of hearing. It thanked me for putting in my destination so he could get step-by-step written directions.

Needless to say, I was impressed.

My driver’s name was Scott and he was extremely helpful. He was able to read lips and had a phone charger, water and candy all set up in between the seats for his passengers. Our conversation was great. We joked around about the irony that one of us was hard of hearing, while the other one had a visual impairment.

I am amazed that a company such as Uber went out of their way to accommodate its drivers in a way I have never seen before.

Thank you, Uber, for the safe ride home. And thank you, Scott, for everything.

Diversity is awesome.

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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.

The Mighty is asking its readers the following: Share with us the moment, if you’ve had it, where you knew everything was going to be OK. 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.

Lead photo source: Thinkstock Images

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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

The Mighty is asking its readers the following: Write a thank you letter to someone you realize you don’t thank enough. 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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