This blog post goes out as a message to all the CRBF families about the foundation’s new Eye on the Finish Line campaign, but everyone else keep reading because you need to hear this too.
Happy holidays everyone! It’s that time of year again when everything is crazy, stressful, and there’s no time to slow down. With this season comes the end of one chapter and the beginning of another. We will say goodbye to 2021 and wait to see what the new year will bring. The resetting of that clock provides a clean slate on which we will set goals for the new year. Everyone makes their lists of what they wish to accomplish and hope they will actually stick to it this time. Well, I have a favor to ask you this year. I’d like you to add one more thing to that list before the new year comes: Join The Fight Against Blindness.
The Curing Retinal Blindness Foundation (CRBF) has been around and working hard for over a decade. We raise money and fund research projects in hopes of finding a cure for the CRB1 gene mutation. This is a rare mutation that received little attention in the medical world before CRBF was founded. This organization is a collection of families from across the world who are affected by CRB!. We all want the same thing, to find a cure and fight against blindness. It may seem like a daunting task, but we can be capable of so much when we come together and fight as one. We can fight blindness, but our success depends on all of us working together to reach our collective and attainable goal.
Guess what? A lot has already been done in this fight. The rest is the easy part that you get to join in on and relax for the rest of the journey. We’ve had hundreds of fundraisers and raised millions of dollars. All these years of work have gotten us far on our journey. We as a group have learned a lot in this fight and have been through even more. All of us have our own stories about our experiences as part of the blind world. If you would like to read some of my personal stories, you can look at a couple of my previous blog posts like My Mini Success Story and All the Little Things. We know how to fight now and have all of the information to help you fight. Visit our campaign page to learn more about our campaign and how you can help. (This information may not be published yet, but we promise to have it up soon so make sure you re-visit this link!)
We are so close to the finish line. In fact, the foundation has just launched a new campaign to help us keep our eyes on that finish line. All of our work is finally paying off. There are only a few more obstacles before we reach our ultimate victory. In other terms, a cure is in sight. We could literally see results in the next few years. We have seen quick success overnight and are more than ready for the payoff of all of our hard work. Everything is falling into place at last. All we need is for everyone to join together and give one final push to send us over the edge.
If there ever was a time to join the fight, its now. It doesn’t matter how small your contribution or how little your donations, we need all of the help we can get and as many eyes as possible on that finish line. Especially our families out there. The foundation is working to put together a Fundraising Toolkit. Email firstname.lastname@example.org for more information. The toolkit will allow you to organize your own fundraisers in your local communities Anything you can do will help, and I mean anything. As far as everyone else, DONATE. Go to our donation page and press that donate button. Every penny helps. We don’t even care if you literally donate $0.01, just PRESS THE BUTTON. (Just kidding. We would politely ask that you donate more than a penny. Though, hey, if that’s all you got, then we’ll take it.) The more we come together, the faster we will find a cure.
New year equals new possibilities. With the ending of this year’s chapter we turn the page to a new chapter with new opportunities. If we achieve our collective resolution this year of coming together to fight blindness, we will be that many steps closer to our goal. Hopefully, we can work together to keep turning pages and eventually reach the end of our book by finding a cure. Then we will be free to start a new book, and tell a different story.
You have come on adventures to the park, traveled from New Jersey to Florida, to the new walls of our house, to the zoo, to the doctors office, to the beach. You have been everywhere. Everywhere that I have been. Because “you” are a part of me, and will be just as important in my life as putting on my shoes. You will give me independence and freedom.
To explore. And venture. And live a life without depending on anyone but just you and I. So here is to you, ‘pink cane’. Thank you for being there. For being the stability in my world and giving me eyes on the ground. For allowing me to be wild and free and run after my brother. You will be my eyes, as my vision declines and I perfect your skills to come. You will be my sight. And I am forever grateful for all the things you will provide.
But one thing I ask, is to be patient with me. Patient as I build our bond. Patient as I explain to others something in which they do not understand. Patient with me on days that I may test my own boundaries and think I don’t need you. I know I do, but I will learn that for myself when the time comes. So just get ready, white cane, because I’m going to take you on crazy ride and you will take me to all corners of the world. And I cannot wait to experience the adventures the two of us will go on together.
Since I have been writing my blog, I have come to realize something. Some people have given me feedback on my blog posts and I have been noticing other things on social media, but they have brought me to the same conclusion. People without low vision don’t understand what it is like to live with it. This is completely understandable, but what I don’t understand is why they would have opinions, or in some cases pass judgements, on people with low vision.
There was a post I saw on social media of a woman with a walking cane who was texting on her phone. I didn’t think anything of it, until I saw what people were saying about it. There were negative comments about how she shouldn’t be texting if she was blind with a walking cane. What those people didn’t understand is that there is no one way to be blind or have low vision.
This was such a bizarre concept to me because I have been immersed in the blind community from a young age. I had to remember that not everyone has been exposed to the variety of ways there are to be visually impaired. Not everyone understands that there is no black and white to low vision, but a world of grays that many people in the blind community fall within.
There is a wide range of ways to be visually disabled, not just seeing and not seeing. Everyone with a vision impairment has different strengths and weaknesses in their vision. Similar to the woman in the photo, I have a friend in Australia who is legally blind and uses a walking cane, but can still do many “normal” things like texting. It is impossible to know the visual capabilities of someone with a vision impairment unless you ask them. Being visually impaired isn’t something that lies on the surface for everyone to see.
I am a perfect example to make this point. Most people wouldn’t know that I struggle at all with my vision because I show no outward signs of low vision I don’t use a cane, have a seeing eye dog, or read braille. Ever since I have started my blog, people I have known for years have read it and said they didn’t know I struggled as much as I did with my vision. There is more than one way to be blind or have low vision, and that middle area is where most of us fall, which is why others often don’t understand it.
Vision impairments can be a tricky thing to understand and figure out, especially considering that everyone who has them bears it in a different way. It is okay to not understand it. I know there are a lot of things in this world that I don’t understand. All I ask is that other people not judge something or someone for reasons that they aren’t educated enough on to fully understand. I don’t think that is too much to ask for.
On the last school camp I went on, one of the activities the class did was stand up paddle boarding. Each student received their own board and we were all instructed on how to stand up and paddle without tipping ourselves over.
Once on the river, I stood up on my board like everyone else. However, I was then approached by one of the girls in my class who told me “Congratulations, this must be such a big accomplishment for you!” I asked her why she thought it was such a “big accomplishment” for me in particular to which she replied with “you know, because you can’t see well”. I did not think much of it at the time, but much later, when I revisited the conversation in my mind it really annoyed me.
A theme I seem to be finding more and more often, as I am getting older is that people have different expectations of what it is that I can achieve purely because of my visual impairment. Being visually impaired does not impair what I can achieve; it simply changes how I achieve. I may not read a book with my eyes the same way my peers do, but I will read that same book just as well with my fingers. I may not write my school assignments with pen and paper, but I will write them just as well on my computer.
I want people to understand I am just as capable and that they should not expect less of me because I am visually impaired. I know my own limitations; if I cannot do something, I will not do it. I do just as much as everyone else does; I simply use slightly different methods to even the playing field.
Great news! This past month I got my score back from the AP exam I took this year. It turns out that I got . . . a 5!
Now, I am going to very briefly break-down AP exam scoring for those of you who aren’t familiar with it. First of all, AP stands for “advanced placement”. These are classes you can take in high school for college credit. The exams are known for being brutally hard and are scored on a scale from 1-5. A 5 is the highest score possible, but you only need a 3 to pass.
So, to sum up, I did pretty well on my exam. I mean, I got the highest possible score so I couldn’t have done much better. In all honesty though, I was really just hoping to pass. The reason being, I had some extra challenges when dealing with this exam. It was a bumpy ride, and I can’t even describe how relieved (and surprised) I am that I came out on top.
You would think that a college level class and an exam designed to challenge the students taking the advanced class would be enough stress for a high school freshman, right? Well, it turns out that I had a couple more hurdles to jump for that passing credit.
About a month before the exam date, I emailed my counselor to confirm that I would be getting a large print exam and extended time. I almost didn’t email her because it seemed a little unnecessary since I have an IEP in place that assures I receive these accommodations. The purpose was more to ease my mind and to be absolutely certain that everything was in order. You can imagine my surprise when she emailed me back and said she had yet to put a request in to College Board for the accommodations I needed.
She was referring to a process that I was completely unfamiliar with. Apparently, regardless of an IEP or any other on-record forms, all requests for accommodations must be made to College Board by school counselors at the beginning of the year. This is not what happened to me.
My counselor should have made the request months before I emailed her. It shouldn’t have ever been something that I had to worry about. She didn’t though, and I did.
It was now a week before the exam and I was busy cramming in study sessions whenever I could. Then we received the good news that College Board sent a large font test for me. It was a relief and I was able to study while being slightly less stressed. For about three days. That is when we learned that I couldn’t use any of the materials that they sent specifically for me because they hadn’t approved the accommodations.
To say the least, I was annoyed. I mean, it didn’t make any sense. I had a legitimate need for those special materials and they were right there with my name stamped on them, but because some idiot sitting in an office hadn’t hit the “APPROVE” button on their computer, I couldn’t use them.
If I was annoyed though, my mom was beyond outraged and one notch away from barreling into the school to yell at anyone who would listen. I had to avoid bringing it up and keep my anger in check to keep her from going off about it. For a little bit I was worried that she wouldn’t let me take the exam and I would have to wait until next year when my accommodations would be approved. I really wanted to get it over with so I tried to calm her down and reason with her.
To say the least, it was a stressful few days leading up to my exam. If only the stupid system was a little bit more efficient or my counselor had made the request when she was supposed to. The entire mess could have been avoided, but that isn’t how the system works.
The dreaded day had arrived. I had studied and prepared to the best of my abilities. All that there was left to do was take the test.
Let me give you a quick rundown of what I dealt with during this two hour long test. Part one was one hundred multiple choice questions in seventy minutes. These were not easy little questions either, with one sentence questions and one to two word answers. The questions that I had to tackle consisted of long paragraphs and multi-sentence answers. It was brutal and I had less than a minute for each question. I ended up running out of time and filling in the last ten questions on my answer sheet as C. The second part was much easier because it was writing and there was very little reading involved.
Overall, it was a draining experience and I walked out of the testing room questioning if I even did enough to pass. Not to mention my eyes hated me for putting them through that and had their revenge with an awful headache that lasted the rest of the day.
Surprised doesn’t even begin to describe my feelings when I found out I scored a 5 on the exam. I was preparing for the possibility of not even passing when I logged in to view my score. Looking at my screen I had one of those moments where I just stared and questioned if my eyes were playing tricks on me. I was stunned for about ten more seconds and then realized that I actually scored a five and was more relieved than anything. The horrible stress of the exam and then the waiting for the results was finally over. It was a bonus that my score was so high.
It was also nice to prove that even with the extra challenges in my path, I could still pull out a pretty decent success. In the end, it doesn’t matter what life throws at me or how my vision hinders me. I can come through for myself without help from anyone else.
My five is proof that I can create my own mini success stories with perseverance and determination. How will you write yours?