I was able to meet virtually with Jacob (and his mom Lisa) so I could tell you all about this interesting kid.

Fast Facts About Jacob’s Vision

• He has trouble distinguishing between the colors red, orange, and pink
• He sees better out of his left eye (and barely used his right)
• He sees better out of the sides of his eyes
• His vision acuity is 160/20
• He may get tripped up by a curb here or there, but he will keep on walking

The Beginning

Jacob’s journey started at two years old when he was diagnosed with LCA-CRB1. However, like most CRB1patients, the path to said diagnosis was a journey in itself.

Jacob began experiencing symptoms around nine months of age that were noticed by his parents. They went through many obstacles before finally discovering his true diagnosis. This included following all possible leads to the root of the problem, one of which had been a potential brain tumor. Even once other causes had been ruled out, it still took six months of testing and waiting to get his formal diagnosis: a rare gene mutation that results in a progressive eye disease with no cure.

Since the diagnosis, Jacob has attended yearly doctor visits to monitor his eye disease. He also wears glasses to optimize his visual abilities, though he has admitted he would prefer contacts (only if his room is clean, of course). Additionally, somewhere along the way in those early years Jacob’s family stumbled upon the foundation. While the glasses help Jacob to see, the foundation provides an emotional support system for him and his family that they, and the rest of the families involved, greatly appreciate.

Middle School

Jacob ic currently thirteen years of and is completing his first year in middle school. However, before he was a big, bad middle schooler, he lived in the safe and comfortable world of elementary school.

Leaving Elementary

Jacob faced some struggles in his early years of education. Because of this, he used some accommodations in class. These included a Macbook to do all his work on and extended time on teats. However, as the years passed, he no longer needed extra time on tests because, as his mom said, he became “Such a wiz on the MacBook.”

His mom also said that they lucked out by living in such a great school district. The teachers were all well aware of Jacob’s situation and followed his IEP exactly. Jacob wasn’t really thrilled about this. He would get aggravated at his teachers for trying to tell him what his IEP said he needed when he didn’t actually need it.

The Transition

Jacob faced very different challenges when he entered seventh grade this year. None of the teachers were familiar with his situation and he was essentially starting from square one in his new school. Because of this, he has had a bit of a stressful year, but he appears to have dealt with the punches as they’ve been thrown.

His MacBook is now his only accommodation is school and otherwise he blends right in with all his classmates. Rarely does he need extra help in school, but when he does, he is not afraid to speak up. Overall, Jacob is an independent student who doesn’t let his low vision get in his way.

Adaptions

From two years old to thirteen, Jacob has had a long time to adapt to the world around him that wasn’t built for those of us with low vision.

Adapting to the World

Jacob has become very resourceful in his day to day life. He uses his phone quite a lot to help him see the world. The camera lets him enlarge things that are too small and the flashlights  brings lights when his surroundings are too dark. He also seems to have great friends who help him out in crowded public places. And we already covered his amazing MacBook skills at school. Jacob has definitely figured out how to adapt to this crazy world.

Adapting Himself

Having low vision has had an effect on Jacob’s personality. He said that he had noticed that he is more outgoing due to his need to speak up when he can’t see. The truth is, most people are effected personally by their low vision since it is such a big part of their lives. I think Jacob’s mom put it best when she said, “You have other skills that none of us would ever have.”

Thank you to Jacob (and his mom) for participating in this interview!

The post Seeing You Interview: Jacob Billingsley appeared first on Curing Retinal Blindness Foundation.

Everett, 7, CRB1 Blindness

Picture this: a seven-year-old whirlwind of joy and fearlessness named Everett, whose vibrant spirit and unyielding courage are rewriting the narrative of life with CRB1 blindness. Join this journey into the extraordinary world of a young dreamer who, despite facing the challenges of vision loss, is soaring to new heights and dreaming of becoming a race car driver.

Fearless Explorer and Future Race Car Driver:

Everett, a happy-go-lucky seven-year-old, is not letting CRB1 define his world. With an infectious enthusiasm for life, he dives headfirst into new activities and dreams big. One dream, in particular, shines brightly in his young heart – to be a race car driver when he grows up. His zest for life and aspirations mirror the incredible Erik Weihenmayer, a blind mountain climber who conquered the highest peaks on all seven continents.

Watch Everett’s Daring Climb:

We invite you to witness Everett’s recent feat, a fearless ascent up an incredibly tall pole, captured in this YouTube video. His determination and courage echo the indomitable human spirit, reminiscent of heroes like Erik Weihenmayer. [Watch Everett’s Daring Climb here.]

A Message of Hope:

Everett and his family navigate their journey with hope and optimism. They eagerly anticipate the day when treatments for CRB1 blindness will open doors previously thought impossible. It’s this hope that propels them forward, driven by the belief that opportunities for sight will soon become a reality.

Thriving, Not Just Surviving:

While Everett faces unique challenges, his story is not one of victimhood but of empowerment. In the CRBF community, families are not merely enduring; they are empowering their children to thrive. The strength and determination of Everett and his family reflect the collective spirit that propels our community forward.

Looking to the Future:

Everett’s journey exemplifies the unwavering spirit of those living with CRB1 blindness. As we work tirelessly towards treatments and cures, let Everett’s story inspire us all. Let it remind us that we are not just working towards treatment options; we are fighting for a future where every child has the opportunity to explore, dream, and thrive.

Together, we march forward, fueled by hope, strength, and the unwavering belief that an even brighter future awaits.

The post Fearless, Fun, & Future Race Car Driver: Meet Everett (7, CRB1) appeared first on Curing Retinal Blindness Foundation.

What will my education look like?

I am currently a senior in high school. As I have been applying to college, I can’t help but wonder about a few things. 

Will my professors understand my situation?

Will it be hard to get around campus?

Will I be able to complete all my assignments/tests on time?

For some background info, I’m planning on double majoring in psychology and dance. Then that will be followed up by med school and a residency to be a pediatric psychiatrist. I realize these goals are a little ambitious, which is why I am nervous. I don’t want my eye disease to hold me back from going after what I want in life. 

Also, I want to go out of state for college. For context, I live in Ohio so I need to get out asap. But my mom is worried about me living on my own. She thinks I’ll struggle because of my eye disease and won’t have anyone to turn to. I always tell her that I’ll be fine, but it’s still a little scary (don’t tell her I said that!). 

Are my options limited?

More than anything, I want to help kids to work through any problems they might have so that they can go on to do whatever they want to do. I figured that the best way to do this is to be a pediatric psychiatrist. I am so excited to pursue this career because I think I could help a lot of kids in meaningful ways. 

But sometimes I think about how lucky I am that this is my passion because other careers may be more difficult to pursue. There are many jobs that require 20/20 vision, which I will never have. What if I wanted to be a pediatric surgeon? I couldn’t because of the limits my vision puts on me. I am lucky that I’ll likely be able to pursue my goals, but other kids in my situation may not be able to. 

How will my future look?

I am also very aware of the fact that I may not know how my future will look when I get there. Why? Because I may lose more of my vision. 

Right now, I am fortunate enough to have kept most of my vision with the help of my extra-strength contacts. But five years down the line? Ten? I don’t know what, or if, I will be able to see. It’s a scary thought that haunts my mind. Will I forget what my family looks like? Will I be able to see the faces of any children I may have? Will I still be able to dance? It’s all unknown to me. I don’t like not knowing things. I really, REALLY, don’t like it. But that’s the reality of living with a progressive eye disease. Everything is unknown, and when we try and squint to lol for the answers, all we see are a bunch of blurry spots. 

If you like this post, check out one of my previous posts that goes into more depth on my experiences with education: Back to School

The post Looking Into My Future appeared first on Curing Retinal Blindness Foundation.

In the world of rare diseases, every step forward is monumental, every achievement a beacon of hope. One such beacon in our CRB1 retinal disease community is none other than Dr. Pete Quinn. A couple of years ago, Dr. Quinn received the prestigious Uplifting Athletes Young Investigator award—a pivotal moment that marked the beginning of an extraordinary journey. (Dr. Quinn is pictured above with his white football jersey that bears his name and #21, a gift from Uplifting Athletes.) Today, we are thrilled to announce that this journey has led us to a significant milestone: the NIH’s $1.25 million grant.

Why is funding critical?

Here are three reasons why funding, like the grant Dr. Quinn has helped secure, is critical for advancing CRB1 retinal disease research:

1. Paving the Way for Rare Disease Research: CRB1 retinal disease is classified as a rare disease, which presents its own unique set of challenges. Funding is the key to unlocking the doors of research and innovation. It allows us to bridge the gap between limited resources and the enormous potential for progress. Without adequate funding, the journey to finding treatments and cures for rare diseases can be exponentially more challenging.

2. Accelerating Research: Dr. Pete Quinn’s recognition as a Young Investigator was a pivotal moment because it not only acknowledged his dedication but also signified the promise of his work. Research breakthroughs are not instantaneous; they require resources, time, and sustained effort. Funding accelerates the pace of research, allowing us to move closer to finding treatments and improving the lives of those affected by CRB1 retinal disease.

3. Attracting Top Talent: Securing funding also plays a significant role in attracting top talent to our cause. Dr. Quinn is just one example of the passionate individuals who have joined our mission to #CureCRB1. With resources in hand, we can draw more brilliant minds, researchers, and scientists to our community, all working tirelessly to unravel the mysteries of CRB1 retinal disease.

What lies ahead for CRB1 research?

Our journey is challenging, but it’s a journey we’re navigating together. We’ve been blessed to have a multitude of dedicated individuals like Dr. Pete Quinn who have stepped up to make a difference. Their efforts have led us to where we are today, on the cusp of new discoveries and breakthroughs that hold the promise of a brighter future.

As we celebrate this milestone, let’s remember that our work is far from over. With the NIH grant and the collective dedication of our community, we are poised to make significant strides toward finding treatments and, ultimately, a cure for CRB1 retinal disease. Together, we will continue to inspire hope and drive progress. Together, we will #CureCRB1.

Stay tuned for more updates on our journey, and thank you for being a part of the CRB1 retinal disease community.

The post Dr. Pete Quinn: A Beacon of Hope in the CRB1 Retinal Disease Journey appeared first on Curing Retinal Blindness Foundation.

I want everyone to understand that using a cane is nothing to be ashamed of, and I highly encourage anyone who needs one to use it, I refused to use mine for a very long time, and it lead to a few accidents that could have easily avoided. It is already so hard to deal with the challenges posed by vision loss, without the addition of people’s rude comments or disrespectful way of asking questions. Although it can feel embarrassing to need a cane to get around sometimes because of people staring or because of what they might think, other people’s opinions aren’t worth worth worrying about.  It can be  far more frustrating and even unsafe to walk into people who don’t pay attention, or to constantly walk into chairs  tables because they are outside your field of vision, or to struggle find a safe way to get where you want to go. 

As my vision loss has progressed over time, using my cane to keep myself safe has become increasingly important. However, i’m now finally old enough to be able to take on the great responsibility of having my own furry companion. Dispite having its own challenges, I’m really looking forward to training and later transitioning to receiving help navigating the world from a guide dog as opposed to a cane. I hope this new member of my family sill  be someone that helps me to maintain my independence while keeping me safe and help connect me with others. 

I know a guide dog will not replace the freedom a functioning pair of eyes would give me. But until the time comes that my eyes are free of disease, I will be very excited to explore the world with a cute, fluffy companion. 

iif you want to read more by Ale, here is one of her previous posts What I am Grateful For

The post Navigating appeared first on Curing Retinal Blindness Foundation.

For this first interview, I was able to meet virtually with Jacob Billingsley (and his mom Lissa) to learn all about his story.

Fast Facts About Jacob’s Vision

• He has trouble distinguishing between the colors red, orange, and pink
• He sees better out of his left eye (and barely used his right)
• He sees better out of the sides of his eyes
• His vision acuity is 160/20
• He may get tripped up by a curb here or there, but he will keep on walking

The Beginning

Jacob’s journey started at two years old when he was diagnosed with LCA-CRB1. However, like most CRB1patients, the path to said diagnosis was a journey in itself.

Jacob began experiencing symptoms around nine months of age that were noticed by his parents. They went through many obstacles before finally discovering his true diagnosis. This included following all possible leads to the root of the problem, one of which had been a potential brain tumor. Even once other causes had been ruled out, it still took six months of testing and waiting to get his formal diagnosis: a rare gene mutation that results in a progressive eye disease with no cure.

Since the diagnosis, Jacob has attended yearly doctor visits to monitor his eye disease. He also wears glasses to optimize his visual abilities, though he has admitted he would prefer contacts (only if his room is clean, of course). Additionally, somewhere along the way in those early years Jacob’s family stumbled upon the foundation. While the glasses help Jacob to see, the foundation provides an emotional support system for him and his family that they, and the rest of the families involved, greatly appreciate.

Middle School

Jacob ic currently thirteen years of and is completing his first year in middle school. However, before he was a big, bad middle schooler, he lived in the safe and comfortable world of elementary school.

Leaving Elementary

Jacob faced some struggles in his early years of education. Because of this, he used some accommodations in class. These included a Macbook to do all his work on and extended time on teats. However, as the years passed, he no longer needed extra time on tests because, as his mom said, he became “Such a wiz on the MacBook.”

His mom also said that they lucked out by living in such a great school district. The teachers were all well aware of Jacob’s situation and followed his IEP exactly. Jacob wasn’t really thrilled about this. He would get aggravated at his teachers for trying to tell him what his IEP said he needed when he didn’t actually need it.

The Transition

Jacob faced very different challenges when he entered seventh grade this year. None of the teachers were familiar with his situation and he was essentially starting from square one in his new school. Because of this, he has had a bit of a stressful year, but he appears to have dealt with the punches as they’ve been thrown.

His MacBook is now his only accommodation is school and otherwise he blends right in with all his classmates. Rarely does he need extra help in school, but when he does, he is not afraid to speak up. Overall, Jacob is an independent student who doesn’t let his low vision get in his way.

Adaptions

From two years old to thirteen, Jacob has had a long time to adapt to the world around him that wasn’t built for those of us with low vision.

Adapting to the World

Jacob has become very resourceful in his day to day life. He uses his phone quite a lot to help him see the world. The camera lets him enlarge things that are too small and the flashlights  brings lights when his surroundings are too dark. He also seems to have great friends who help him out in crowded public places. And we already covered his amazing MacBook skills at school. Jacob has definitely figured out how to adapt to this crazy world.

Adapting Himself

Having low vision has had an effect on Jacob’s personality. He said that he had noticed that he is more outgoing due to his need to speak up when he can’t see. The truth is, most people are effected personally by their low vision since it is such a big part of their lives. I think Jacob’s mom put it best when she said, “You have other skills that none of us would ever have.”

Thank you to Jacob (and his mom) for participating in this interview!

The post Seeing You Interview: Jacob Billingsley appeared first on Curing Retinal Blindness Foundation.

How I Have Explained My Eye Disease in the Past

Simple answer: I haven’t. 

What’s even the point, anyway? There are so many individual differences from one person’s eye disease to another: peripheral vision, color blindness, night blindness, etc.  Acuity isn’t the only method of measuring a person’s vision, though that is important, too. Most people hear “eye disease” and think “blindness.” How am I supposed to explain all the little parts and how they apply to me individually to every person in my life? I can’t. 

So I didn’t. I kept everything to myself and pretended like it wasn’t an issue. Whenever there was a problem where I couldn’t see something, I didn’t try to tell anyone about my situation. If anyone asked, I would always tell them “I’m fine” and move on without saying more. I pretended that my eye disease didn’t exist around everyone else, so much so that even  forgot about it sometimes.

It was nice, forgetting the one thing that was so obviously wrong with me. Maybe that’s another reason why I never wanted to explain my low vision to anyone else, because the more I talked about it, the more I had to think about it. It’s easier to forget your own faults when you hide them from everyone else, fooling yourself right along with the rest of the masses. 

How I Explain Now

I realized that I couldn’t hide in the dark forever. Forcing everyone around me to forget about my eye disease only made my life more difficult. I had to start speaking up for myself and letting everyone know about my glaring imperfection before it was forgotten entirely. 

One aspect of explaining something this personal and complex to other people that I recently discovered is that I can’t explain it to everyone is the same way. There are different types of people in my life, and I have to explain it to them in different ways.

Adults/Authority Figures

This group might just be the most difficult to explain to, which is unfortunate because they are also the largest group. I never know what to tell them or how much. Especially with people I have never met before. Its difficult to predict when my low vision will become an issue, so I’m not sure who needs to know and who doesn’t. I don’t want to yell from the rooftops that I have low vision because not everyone needs—or cares—to know about it. However, I also don’t want to hold back and wait until it becomes an issue to explain my situation. 

I try to be more formal when explaining to adults, especially teachers. Depending on the situation or who they are, I will only give them certain facts about my low vision and limitations. For example, I wouldn’t tell my dance teacher that I can’t read smaller than twelve point font, but this is necessary information for any of my teachers in school. I also try to avoid any personal aspects of my low vision, simply divulging the cold, hard facts. 

Young Kids

I can’t say that I deal with a lot of young children in my daily life, so this may seem like a weird category. However, I had an incident a few weeks ago with this little girl that I know, and I thought it was worth mentioning. She is six years old and her mom brings her over once a week so that I can show her a few ballet moves.  She really wanted to learn ballet, and my mom and I were friends with her grandmother who asked one day if I would be willing to teach her granddaughter a few things. 

Anyway, we were having one of our lessons when she asked me to check if her tooth had fallen out.  I tried to look, but I couldn’t see a thing.  I didn’t know what to tell her, so I attempted to explain that I couldn’t see all that well. She dropped the subject pretty quickly and got distracted by something else, which happens quite a lot during her lessons, but I thought it was an exchange worth noting.

I had never been in that type of situation before, where I have had to explain to a little kid about my eye disease. Its hard, because something as complex as an eye disease is difficult to simplify into little kid speak. I doubt it is something I will have to deal with a lot in the near future, but its been bouncing around my mind lately. I thought it was a realization worth sharing. 

My Family

These guys are much easier to talk to and the most comforting. I get to tell them all of the personal and emotional parts of my eye disease. My extended family always wants to know the state of my vision. They might not understand all of the complicated facts that go along with my eye disease.  Sometimes I don’t understand all of it either, but they care about my well-being, which is what’s most important. 

My mom and dad know everything. I swear, they know more about what’s going on inside my eyes than I do. They come with me to my eye doctor visits and sit in on research meetings while I’m at school. I don’t have to explain what my eye disease is to them, but that doesn’t mean they know exactly how it affects me. They can’t see through my eyes to know the shapes of the floaters that block my vision. They can’t live my life to experience how I deal with certain obstacles. I have to tell them all of this stuff, which can be hard sometimes because I don’t want them to worry about me. Nevertheless, I usually tell them everything, even the hard stuff, because they’re my parents and the closest thing to therapists I’ve got. 

The Importance of Explaining

It took me a while to get there, but I finally caught on. I realized how important it is to tell others about my eye disease, and I can’t hide from it anymore. It exists and keeping it inside won’t make it go away. I told myself that i was protecting my loved ones from worry and saving everyone else the hassle of having to deal with me. All I was really doing was protecting myself from having to face the truth. My eye disease is a flaw that can only hurt me the more I try to conceal it from the world. We have to own our flaws and realize that they are a vital part of who we are, or they may just consume us from the inside out.

For more on how I talk about my eye disease, read my post titled Suffering In Silence

The post Explaining My Eye Disease appeared first on Curing Retinal Blindness Foundation.

Not to sound negative, but I despise high school as a whole for countless reasons. Mostly, I find it hard to coexist with other people-social anxiety. Especially when those other people are high schoolers. Add to that my low vision and I have the perfect storm for what is guaranteed to be the worst day of the year. 

There are tons of situations and circumstances that complicate my first day of school because of my low vision. They all played a part in making today especially difficult and stressful.  

Finding My Way Through School

Figuring out where all my classes are and maneuvering through the halls on the first day is possibly the hardest part of starting any school year with low vision. 

New schools

This is the most concerning when going to a new school. I’ve had it easier the past few years since I have been in the same building since seventh grade. I truly sympathize with anyone who has low vision and is starting at a new school building this year. It’s beyond stressful and there’s not much to be done to counteract that. 

I remember my first day at SHS, and it was much worse than what I dealt with today. Everything was new and scary. The hallways were crowded and I couldn’t tell where I was, let alone where I needed to go. The only reason I made it through the day was the orientation all seventh graders had to go to before school started. This gave me a chance to see how the building was laid out and where some of my classes were. Of course, it was much harder on my first day without my parents. Plus there were hundreds of kids pushing and shoving in the hallways. 

The orientation still helped to some degree. Without it, I probably would have been late to every class that day. If you have issues with navigating because of low vision, I highly recommend finding a way to preview a new school building before the first dau. Even if your school doesn’t offer an orientation of some sort, I would guess that most school systems would let you walk the halls before school starts anyways. 

New classes

Even though my school building didn’t change this year, my classes did. Finding my new classes presented a challenge of its own, despite my being familiar with my school. It helped that the building isn’t too big so I pretty much knew the general area of all my new classes

I only had a couple of classes today that were in rooms I wasn’t familiar with. I wasn’t exactly sure where they were, but I had at least memorized the room numbers. You would think it would be easy, or at least doable, to find a classroom once you know the room number. It’s not, at least not for me. 

The room numbers are on the tops of the door frames and are insanely small. I am short and have an eye disease. The numbers and I don’t get along all that well. It takes more than a brief glance for me to read them and others aren’t exactly polite enough the walk around me as I squint upwards in the hallway. I was pushed around more than once in the crowded hallways of SHS today. I found all my classes eventually, and everything turned out fine. 

New classes still aren’t nearly as terrifying as a new school, but they’re nothing to laugh at, either. 

Telling The Teachers

It’s hard to tell anyone about my low vision, but teachers are the worst. My biggest worry when telling someone about my situation is how they’ll react or if they’ll understand. When telling teachers it’s even worse because I need them to understand, or I’ll have a long school year ahead of me. 

It would probably be best if I had this discussion in person, face-to-face. Maybe find time on the first day to pull my teachers aside and explain my situation. This way we could get a better sense of each other and what will work best for dealing with problems throughout the year. I am way too scared to do that, so I just send them all emails. I make sure to be extra polite, formal, and detailed about my situation. So far, I have always received positive responses. This may change when I go to college in a couple of years, but I hope not.

For any other visually impaired teens who are as socially stunted as I am, I want to share a general draft of my emails. You can feel free to use it as a guide to write your own back to school teacher emails. It is a tested and fool-proof resource. You can find the draft here. 

Overall, the first day of school is hard, especially for kids with low vision, or any type of disability. No matter how much you prepare, it’s an unpredictable mess of a day. I would love to say that after the first day, things start to calm down, and life is easy. That’s kind of true, but also not. It may get a little easier to navigate my days, but other problems will always pop up, big and small. The best thing that I or anyone else can do is take it one day at a time. 

For another school related story about my struggles with low vision, check out my previous blog post My Mini Success Story.

The post Back to School appeared first on Curing Retinal Blindness Foundation.

Counting stairs makes life easier. It’s a fact I apply in my daily life. Every time I walk up or down a staircase, whether it be new or old, I count under my breath. Then I remember those numbers and hold on to them for dear life. 

Why Count Stairs?

Walking up or down stairs may be no big deal for others. They do it without a second thought. Sometimes they don’t even watch what they are doing. They can actually rely on their peripheral vision to tell them when to step and how many times to step. 

I can’t. Staircases are a much more terrifying climb for me. When I can’t see where the stairs start or end, it is a very real threat that I may fall. And the more uniform the staircase, the harder it is to see the separation between stairs. Don’t even get me started about climbing stairs in the dark. 

That’s why I count. So I can know for sure when to start and stop climbing. Peripheral vision works great, but when you don’t have much of that, numbers are the next best thing. 

So I don’t look down or fumble on staircases that I know, but it’s not because I can rely on my vision. It’s because I can rely on my counting. 

Staircases: Up vs. Down 

There is a difference. A big one. And it all has to do with shadows. It can be hard to describe, so I am going to use some pictures to help. 

Climbing Upwards

Up is way easier. I don’t need to count for up at all. I can clearly see the separation between steps because of the shadows from the steps above. There is contrast, and contrast makes it doable. 

Climbing Downwards

Down is a different story. There are no shadows. No contrast. Everything looks like a flat slab with no ledges whatsoever. I have to count to know how many ledges are hiding in the seemingly flat expanse. 

The Flaws With Counting Stairs

Finding stairs

Counting isn’t a perfect end-all solution. It helps to know how many steps lie before me, but remember that endless expanse that I face when I go down stairs? Counting isn’t going to help me find those hidden ledges. It only lets me know how many there are to find. 

Finding the first few is the hardest. I have to feel with the toe of my shoe until I find the drop and then step down. Once I get past those first few, I find the rhythm of the staircase and can figure the rest of the way down. 

New Stairs

Counting is completely helpless when I come across a new set of stairs. I’m obviously not able to count new stairs until I climb them, so that first climb has to be done without the counting method. 

Other Habits

Counting stairs is a unique habit that has a direct tie to my vision. It’s a part of my everyday life that helps me get through a challenging normalcy in an easier way. This isn’t the only trick I use to make life work for me. 

I have a few other habits that help me deal with my low vision:

• Giving objects a “spot” in drawers or bags. This allows me to just grab something without looking rather than searching around in a dark drawer. 
• Using my peripheral vision. When I find myself in the dark, I use my peripheral vision to figure out my surroundings. There is a scientific reason why this works that has to do with the location of rods vs. cones in the eye. All that really matters, though, is that it works, and it comes in handy. Trust me. 
• Using touch over sight. The sense of touch is a trick in itself. There are so many times daily when I catch myself feeling my way through a task that others would use their eyes for. I do it even when I don’t have to. It’s habit. Things like buckling a seatbelt, tying my shoes, or cutting veggies (this one scares my mom). There are a thousand more examples of things I feel my way through, but I made my point. 

My low vision lands me doing many things like counting stairs to aid in every day life. Little tweaks I make to normal tasks to modify them for my use. It’s something I have learned over years of experience dealing with a vision impairment in a seeing world. It’s called adapting and everyone has to do it in their own way. I found mine and I hope that all of you can find yours. 

To read about one of my vision related staircase struggles, check out my previous blog post Annoying Kindnesses.

The post Counting Stairs appeared first on Curing Retinal Blindness Foundation.

I have felt this way many times over again in various scenarios towards various people. It’s okay to get annoyed by kindness sometimes. You have every right to those feelings that hit you like a rock when you’re handed a flashlight or someone grabs your arm. It may in reflection seem wrong to hold resentment against kindness, but it comes with the territory of vision impairments. Just one more thing to grin and bear. 

Here’s an account of one of my more recent run-ins with double-edged kindness. 

The Initiating Event

I walked into my seventh period class on the last week of school. It was one of those classes that wasn’t really a class anymore as it was so close to summer. Somehow the decision had been made to go sit outside until class was over. I didn’t care either way. We all walked down the stairs and out the door. 

Then there were two concrete steps right outside the door. You know, the kind where you can’t tell where the ledge of the first one drops off so you have to feel with your foot for the edge. I was rushed because of the people behind me so I almost tripped down the step when the teacher grabbed my elbow and helped me the rest of the way down. I was grateful for her help and we continued farther outside. 

The Annoying Kindness

After class that same day when we went back inside, my teacher asked if I needed help up the stairs. I could clearly see the separation now from the ground angle and politely declined her offer. Still, I couldn’t help but feel a little annoyed. 

Later that week, we went outside again. This time, my teacher asked if I needed help on the stairs in the building. I shook my head no and kept walking. I felt vastly more annoyed that the day before and a little incompetent. It’s not like I had walked up and down those stairs every day of the school to get to her class or anything. 

Then when we reached the concrete stairs this time, my teacher helped again.I appreciated it, but less this time. 

Then my teacher asked if I was okay walking up a slight incline in the grass. I mean, what is that? It was just grass.

Needless to say,m I was annoyed

In My Mind

I felt pathetic. Weak. Helpless. 

I was annoyed. But I was annoyed at myself. 

Everything I was feeling combined into this annoyed frustration with my own limitations and how pathetic I thought I must look to other people. I hated myself for what I couldn’t do. Hated that I needed my teacher to step up and help me down those stairs. Couldn’t stand that she was so careful around me whenever she thought I might be struggling. It’s hard to need help with an action as trivial as walking down a few stairs. Those overpowering emotions consumed me and I felt like I wanted to scream at my teacher to leave me alone. 

But it wasn’t her fault. I wasn’t annoyed with her at all. She was kind enough to help me when I needed it, even if I didn’t want it. I projected my anger with myself onto her because it’s easier to blame another person’s kindness than to own up to your own weakness. I greatly appreciated her help because I needed it, but that didn’t erase the frustration I had with myself.

More About Annoying Kindnesses

Annoying kindnesses can be a common occurrence for all of us visually impaired individuals, and that’s okay. We have every right to our annoyance, as long as we don’t take it out on the person offering the kindness. They are only trying to help and we have to respect them for that. 

It is also okay to refuse kindness, even if it would be helpful. Sometimes it’s easier to struggle through the dark than pretend that the dim flashlight being held by the person next to you is actually helpful. It’s also important to accept help when you need it. We don’t always want that person next to us to grab our elbow and lead the way, but it can be a necessary aid when you are working with less than perfect vision. 

The two-faced nature of annoying kindnesses can be difficult to handle. We have to appreciate the kindness while we combat the rising annoyance. It’s hard, there’s no way around it. Sometimes it helps me to remember all the different things that I’m good at, so maybe it’s okay if I need a little help with this one aspect of my life. Everyone needs help sometimes and who knows when it will be my turn to help someone else. Maybe if we all helped each other more then it wouldn’t be so hard to accept help when it is given to you. 

Anyway, kindness it a good thing, whether it is found annoying or not. We all need to learn how to give and take kindness a little bit better. Then that dull flashlight in the middle of a dark parking lot might bring a smile to our faces instead of a scowl.

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