Meet the Blind Month: Stephanae’s Journey

by Stephanae McCoy

It was 2005 and as long as I live I’ll never forget the moment it happened. I took out my right contact lens and while still looking in the mirror—my face vanished. 

 

Hi my name is Stephanae McCoy, abilities crusader and founder of www.boldblindbeauty.com a website designed to empower blind and visually impaired women while connecting sighted and non-sighted communities. Thank you Chelsey for inviting me to participate in your Meet The Blind Project for October.

 

My sight loss journey spanned four years and began with one macular hole in my left eye. There were no warning signs and the best I can surmise is that it happened sometime during the day it appeared or the night before. 

 

As a high myope (extremely nearsighted) all of my life, my contact lenses brought everything into clear focus. Since my prescription was so strong when I took out the right contactrendering my right eye almost sightlessthe remaining vision in my left eye couldn’t detect my face because of the macular hole. 

 

At the time of the first macular hole, I could still detect light and colors but everything I looked at with my left eye was distorted. It was like looking in a funhouse mirror where the jumbled reflection was similar to looking through a kaleidoscope.

 

Due to a number of factors my prognosis was extremely good and I was assured by my retina specialist that my sight would be restored. The restoration process included a number of surgical procedures which worked of a time, then failed. Fast forward four years with issues in both eyes including: a macular pucker, epiretinal membrane, retinal detachment, glaucoma, cataracts, broken blood vessels, and uveitis I was declared legally blind.

 

I have no usable eyesight in my right eye and rely heavily on the residual sight in my left. Since I can no longer see the eye chart my doctors measure my vision with finger counting and hand waving. 

 

When I was declared legally blind this was the moment where I was told nothing more could be done. While it was true nothing more medically could be done I’m so thankful that wasn’t the end of my story. There are many tools and trainings available to help people who’ve lost their sight regain and sustain their independence.

 

Today I run Bold Blind Beauty sharing with the world the capabilities of blind and visually impaired people. The idea here is to dispel misconceptions and build awareness and appreciation for our unique attributes. Bold Blind Beauty believes Real Beauty Transcends Barriers.

 

You can connect with me on the following social media platforms:

 

Website: www.boldblindbeauty.com

Facebook: @BoldBlindBeauty

Twitter: @BoldBlindBeauty

Instagram: @BoldBlindBeauty

Meet the Blind Month: Amanda’s Life.

By Amanda Gene 

I was asked by Chelsey, who runs the blog, VIBlindResources, to join in her project meet the blind month.

Let me introduce myself, my name is Amanda Gene. I’m 30 years old, I have a Bachelors of Arts in Print Journalism with a minor in Professional Education. My blog, www.amandagene.com has been going strong for nine years and it covers a variety of disability topics, day in the life, ect.

I have an eye condition called Congenital Nystagmus which I have had since birth. My vision is like looking through a piece of Saran Wrap. My vision is at its strongest in the morning, and it deteriorates through the day. I have Night Blindness and was diagnosed with it in 2011. I noticed my Night Blindness in the spring on 2008 on my senior trip to Disney World, but I was not sure if it was stress or something else. So, the next time I saw my eye doctor I asked about my symptoms and was told I had Night Blindness. My Night Blindness has been fluctuating recently. Sometimes I can see just fine, sometimes I can see just light and shadows and on really bad night’s I can’t see anything at all. 

I use some assistive technology aids to help me live as a normal life as I possibly can. I use a screen reader called ZoomText to help me see my computer. Kurzweil 3000, to help read books, emails, and other printed material. I have a talking book player and I’m signed up with BookShare.org to access books in audio format. I have my Apple Iphone 6 S plus with voice over and speak tool to access my emails, text messages, ect. Lastly, I have the Amazon Echo to help me with looking up recipes, to check the time, to check my spelling of words when I am writing, and the list to keep up with my To-Do lists and my shopping lists.

In the kitchen I have a talking thermometer, a black/white cutting board and long oven mittens. 

 

Places you can find me:

www.AmandaGene.com  Blog

https://www.youtube.com/channel/UCt7ecLXRimvYFUZJ9WYYXXw/featured?view_as=subscriber -YouTube

https://www.pinterest.com/amandagenenelso/ Pinterest  

https://twitter.com/AmandaGeneN Twitter 

https://www.instagram.com/amandanelson88/ Instagram 

amanda@amandagene.com Email 

https://www.facebook.com/AmandaGeneN/ Facebook 

If you would like to be apart of meet the blind month, please email either a blog post of five minute video to Chelsey by October 13.

Email:

 viblindresources@gmail.com

 

 

 

My True Story Growing Up Being Visionally Impaired

By Chelsey Zumpano

This post is in response to an article that was supposedly talking about 15 amazing facts about blind people, but it was very negative and generalized us! I hate when people generalize a group of people! Just because we are blind or visually impaired doesn’t mean we are all the same! Instead of going off on a rant on how bad this article was, I’m going to tell you about my experience being visually impaired

Chelsey and Clint in the hospital hooked up to IVs and breathing tubes.

My eye condition is called retinopathy of prematurity, (ROP). Me and my twin brother, (Clint), were born at 25 weeks, so we were micro preemies. I was 1 lb. 6 oz. and my brother was 1 lb. 12 oz. ROP has to do with your Retina and I have a fully detached retina in my right eye and a partially detached retina in my left eye. This means I have low vision in my left eye and zero vision in my right. To learn more about my vision watch my video ‘WHAT CAN I SEE/WHY DO I WEAR GLASSES?‘ I also have a fake eye that is on top of my right eye because it is tiny and didn’t develop, so the eye is there that way my eye stays open, it’s also there to keep my face from drooping and so I can still use my facial muscles on that side.

Chelsey is on the left and Clint is on the right. They are both bald.(Picture when we first came home from the hospital).

Clint came home at three months, while I came home at six months because I had more health problems.

Chelsey and Clint wearing birthday hats and sitting in high chairs.

(pictures from our first birthday).

I grew up and went to school like everyone else because that’s the thing I am like everyone else, but I just happen to have a disability. I never felt like I stood out or was invisible because of my visual impairment and I was never bullied. I learned how to ride a bike, a dirt bike, how to drive a go cart, and skateboard just like my twin brother Clint. I made friends, although I was never the most social person around.

Clint and Chelsey wearing tiny graduation hats.

(Picture from preschool graduation).

I went to mainstream school through my entire schooling: I had aids to help me out in class where I needed it. I started to learned braille when I was in first grade, so when the other students were learning grammar and writing I got taken out to learn Braille. I took regular classes like everyone else, I just had extra time on tests, shortened math assignments because I read that in large print and that straines my eyes, I took tests in another room that way could be read aloud to me because I learned better this way. I was able to do all this because I had an IEP, (individualized education plan), which helps kids with disabilities get accommodations for school.

I started learning how to use a cane when I was in fourth or fifth grade and first I only used it when I went on orientation and mobility, (which is when I went out into the community to learn how to find my way around, learn walking routes, learn how to ask for shopping asistants), It wasn’t until six grade when I started at a new school that I started using my cane at school, then it wasn’t until I was in high school that I started using my cane all the time.

I was embarrassed because I felt like everybody was staring at me, but my aid helped me realize that the cane was there to help me and that most people recognized a cane for what it is.

I was able to navigate school by practicing the route to my classes on the brakes before the semester’s begin again. I knew of certain landmarks, I counted the doors, and I always went the same way to my class.

In fifth grade I ran for student council, I made a speech and presented it in front of our school. I was pretty good at memorizing it, (still am). Talking in front of people was nerve-racking. But I did it and became Vice President.

In seventh grade my lens ahered to my iris, it actually happend twice… The first time it happen: we had just gone to the eye doctor before and the next day, I woke up with extreamly fuzzy vision and we went to the eye doctor and she dilated my eye and it was back to my normal. We thought it was because we use different drops to dilate my eye.

Fast forward to a month later and it happend again! This time my vision was fuzzy, blurry, and dim. It was sort of how my vision is now at twilight, (the time following sunset), where I can see silhouettes, but more defined because that day it was more like shadows. I was able to see more laying down and less when I sat up. We went to the eye doctor and again she dilated my eye back to my normal. Then she told us my lens ahered to my iris and I’d have to have surgery to correct it.

In the weeks leading up to the surgery, I had my eye dilated all the time and had to have the pressure in my eye checked. I didn’t go to school during this time, so me and my mom started reading ‘Twilight’ by Stephanie Meyer because books are a great way to get out of your head and into someone else’s for a while. I’ve mentioned in my video ‘Tips to Help Manage Anxiety‘ that reading is one my coping skills for my anxiety and this probly when it became a thing.

I had the surgery and everything went great. Afterwords I had to get use to a new normal: like my eye have trouble adjusting to light when I go inside and this is when twilight became my worst time a day.

In eighth grade I went to my eighth grade dance and danced with some friends, even though the lighting was dim.

In high school I took art classes all four years and was able to take the art AP test. At first I had my aid help me out in the class and then as the years went on I was able to work in that class independently and this was because I had one amazing art teacher!

In 11th grade we went to the ‘Crocker Art Museum’ and I was able to touch some of the statues and get up closer to look at the artwork. This was all thanks to my amazing art teacher!

Back then my favorite medium was acrylic paint, but now it’s a tie between oil pastels or graphite.

A collage of three pictures: on the left Chelsey and Clint are together and then there a picture of each of them by themselves. They are wearing a cap and gown.

I graduated high school in 2014 and since then I have created this website, YouTube channel and various social media’s for VIBlindResources. I want to one day become a guide dog trainer, but for the moment I’m going to take creative writing classes and take classes to become an occupational therapist.

I want you to know that you are never alone and that you can do anything you set your mind to! Don’t let negative people stop you from doing what you want to do in life!

If you would like to tell us your story email: viblindresourcesgmail.com