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Vision Loss With A Vision Gained

Vision Loss With A Vision Gained Featured image description is in the body of the post.

Vision Loss With A Vision Gained

“I experienced repeated hospital visits, 21 spinal taps, two eye surgeries, and one temporary shunt in my head. With my current level of vision I can see hand-motion in my left eye and light in my right eye.” 

~Krystle Allen

Woman On The Move 55 Featuring Krystle Allen

Image 1 description is in the body of the post.
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I became legally blind 18 years ago to an acquired condition called Pseudotumor Cerebri due to malpractice. Pseudotumor Cerebri is a false brain tumor. It mimics all the symptoms of a brain tumor except for the actual growth of a tumor.

In lieu of a tumor, excessive fluid is produced around the brain, spinal cord, and optic nerves. It manipulates the brain to shift forward placing pressure on the optic nerves. This lead to inflammation of the eyes and nerves rupture as well as dangerous head pressure levels. If left untreated it can lead to total blindness in some cases and brain aneurysm.

My condition is in conjunction with Papilledema which is the rupture of the optic nerves and bilateral optic atrophy. At the start of my vision loss, I did not know how to respond because it was a foreign circumstance to me.

There were repeated hospital visits, 21 spinal taps, two eyes surgeries, and one temporary shunt in my head. I am able to see hand-motion in my left eye and light in my right eye. Out of my peripheral view, I see blurriness, floating red dots, and most objects.

When I developed this condition I was expecting to enter my junior year of high school in Passaic, NJ. I believe there was a different plan in store for my life. What many might view as a set back I now know was a set up for greatness!

Adjustment, Transition, and Adaptation

I was declared legally blind due to my incurable condition and vision restrictions. However, my vision loss was my vision gained to pursue visionary experiences for the rest of my life.

I will not pretend that losing my vision was not difficult and will not be difficult. However, where there are difficulties there is an adjustment, transition, and adaptation.

At the beginning stage of my vision loss, I adjusted to the good and bad one day at a time. Before my vision loss, I had never met a person with a vision impairment. I had no knowledge of the resources and broad community of people who happen to be vision impaired. People such as students, advocates, employees, employers, entrepreneurs, and movers and shakers.

Transition meant taking advantage of every opportunity that came my way to regain and build my independence. Beginning with being proactive in using the services available from training centers for the blind. I re-enrolled in high school and went on to study social science once I entered college. In addition, while pursuing my studies I also worked part-time jobs.

I became a self-advocate due to lack of access to adaptive technology in my learning institutions and my places of employment. My day-to-day challenges inspire my drive to be a better person and leave a lasting impression.

Living Life On My Terms

There are so many stereotypes which challenge my efforts to live life and not just exist. Things like:

  • people approaching me to ask who dresses me,
  • employers doubting my skill sets before experiencing my talents,
  • or even when passersby critique my independence

It’s as if I should always have someone helping me because of my disability. How does the phrase go? “I can show you better than I can tell you.”

My experiences have taken me as far as Tokyo, Japan to advocate for residents with disabilities. For starters, I blaze trails of innovation to share resources and uplift people who I encounter daily. I’m a founder of a non-profit organization Eyes Like Mine Inc. Our mission is to share awareness about the capabilities of individuals with vision loss through:

  • community service initiatives
  • comprehensive empowerment workshops, and
  • innovative social change awareness events

Along with my past and current ambitions, I’m a plus-size model and competed in the 2018 Face of Kurvacious competition in New York. I am the creator of the Ms. Blind Diva Empowerment Pageant on a mission to empower women with vision loss by providing tools to encourage and cultivate their daily life experiences.

“The sky is the limit for me and I do not allow my doubts to be bigger than my dreams. I don’t party in pity; I party in heels. And I am not the blind chick but the original blind diva and Ms. Blind Diva if you’re nasty!” 

~Krystle Allen

Krystle Allen Bio:

Krystle Allen is a Newark, New Jersey native. She is a millennial entrepreneur and non-profiteer. Krystle is no stranger to work that involves community development, social change, and grassroots efforts. Krystle presently serves as an AmeriCorps Vista member with a non-profit organization known as the Jewish Renaissance Medical Center located in Newark and Perth Amboy, New Jersey.

Vision Loss Featured Image Description:

Krystle looks stunning in a royal blue one-shoulder form-fitting dress as she stands to pose with her blinged-out white cane. Shiny crystals adorn the single strap on her right shoulder and she is wearing a pink wrist corsage. Her long dark hair flows gently over her right shoulder.

Image 1:

Headshot of Krystle in a mauve off-shoulder sparkly top. Her dark hair is draped over her left shoulder and she is wearing a gold statement necklace.

Social Media Channels:

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WOTM 54 Featuring Naomie Inas

WOTM 54 Featured image description is in the body of the post.

WOTM 54 Featuring Naomie Inas

“Having a visual impairment can be very limiting. Your vulnerability can make you feel timid and afraid to try new things or go to new places. But I’ve learned to channel my vulnerability into my music and just be real about my sight loss.” ~Naomie Inas

I have an anecdote for you…

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The best job for you if you can’t see well is a fitness instructor. That’s what I did for ten years and it was great not focusing on small details but rather people’s form. One of the best things about being legally blind for me is the increase in all my other senses especially intuition. This intuition boosts helps me to adapt to my surroundings.

Always an independent person who loves to rise to the challenge, I’m a natural-born risk-taker. I didn’t grow up in a positive environment and due to my visual impairment, felt I had to excel at everything I did. As a young person filled with pain, it was easy for me to connect to music and express myself constructively.

Having a visual impairment can be very limiting. Your vulnerability can make you feel timid and afraid to try new things or go to new places. But I’ve learned to channel my vulnerability into my music and just be real about my sight loss.

Since I was born with poor eyesight and adapted accordingly, I didn’t realize my view of the world was limited. It was when people asked why I held my book inches from my face that I realized I don’t see the same as others. My visual impairment is Ocular Albinism and I also was born with Oculocutaneous Albinism. So my appearance is different from the rest of my family and ethnic peer group.

You Don’t Look Visually Impaired

The challenging part for me is many people can’t tell that I am in fact visually impaired by looking at me. Some come to notice when we sit down in a dim restaurant to order food, lol. When they see how I function, then they get an idea that I can’t see too well. So it’s been a mixed bag of tricks when it comes to getting assistance from service workers I encounter day-to-day. I take it in stride.  

The most significant thing for me is my ability in music production. While I trained as a vocalist for many years, I’ve never trained to use the keyboard. First, I have to spend time learning all the functions on any instrument or equipment I acquire. This enables me to work from memory and decrease visual strain which then increases my creative flow.

I’m not going to lie and say being a visually impaired musician is easy. For the passion of it all, it bears many disappointments. Some hiring bands won’t hire you when they find out you can’t drive yourself to rehearsals and gigs. I’ve personally experienced being passed over for many opportunities. Since I have such a determined spirit about my craft, being left out of those opportunities only propelled me forward. There’s nothing like the feeling of doing my thing and crafting what I feel as an artist. That’s what I am here to do.

A little about me the recording artist:

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My stage name is Naomie Inas. Inas is my Arabic middle name given at birth. I was born Naomie Hamilton to Rita and John Hamilton in Philadelphia, Pennsylvania. I grew up in the middle suburb of Bensalem and became emancipated at age fifteen and left home.

My heritage is a bit mixed since my father is a second-generation Haitian-American and his mother was Hispanic. Though my mother’s heritage is unknown it is believed to be also West Indian. I have a unique sound which appeals to my urban roots. Relaxed funky grooves and sensitive lyrics with a bit of an edge, telling my story, mainly of love.

At age six I began singing and made my solo debut in my high school talent show. I won first prize for singing “I Don’t Wanna Cry” by Mariah Carey. After my first debut, I went on to perform for various open mics and local talent showcases. I trained in formal jazz technique and classical over a span of three years. Then I branched out into more mature singing by performing covers with live bands. I also sang in an a cappella ensemble for several years then started recording demos and writing my own lyrics. The skill of writing lyrics was one of which, I had always done since I was a child.

My Artistic Process

I write all of my music from inception to production. “I usually have a melody in my head and I work the music out the best I can. I’m a self-taught music arranger. I’ve always made music though, even as a girl. It was a matter of figuring out how to use the equipment to get the grooves in melodies living in my head out and into an audio picture I could share with the world.”

I use my music as personal therapy before putting it out into the world. My hope is for my music to reach and inspire as many people as possible. Especially those with visual and other challenges to encourage them to be anything they desire. Because sight is mostly internal, having limited or no vision will cause you to adapt to your world to accomplish things.

As an independent recording artist; I’m working very hard on my album. This album will be my second effort in the last ten years and will be released digitally in the coming months. I have recently launched my publishing for my music writing and production with my new page www.naomieinasmusic.com. You can go on my page and listen to my new tracks, join my mailing list and support me by buying songs which are available on all online distributors like iTunes, Amazon Music, CD Baby Spotify, Tidal and more…

WOTM 54 Featured Image Description:

In this photo, Naomie has a certain je né sais quoi that makes her look like a star. Fashionably elegant and sporting a blond bob, she is wearing an open cropped jacket with a fur-trimmed collar. In muted shades of brown, her outfit includes a bra with a coordinating skirt and a long pendant necklace. She is standing with her left hand against a red brick wall.

Additional Images: 

  1. Three-quarter profile of Naomie with one shoulder exposed. A pop art filter (sort of overexposed effect) creates hues in red, blue, white, pink, purple, green, and orange. In this photo, Naomie’s hair is upswept and looks black.
  2. Naomie is performing in this photo. She is wearing a gray tank top and gray skirt. The neckline and straps on Naomie’s tank are trimmed in black. Her arms are raised as she dances to the rhythm of the music. A set of drums are behind her and to her right is a man playing the keyboard against a backdrop of red drapes & spotlights.

www.naomieinasmusic.com

 

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WOTM 53 Featuring Ashley Neybert

Ashley Neybert Featured Image description is in the body of the post.

WOTM 53 Featuring Ashley Neybert

“Since I have discovered myself in my blindness things have been the very opposite of dark. I have made friends all over while working towards making science more accessible for the blind.” ~Ashley Neybert

Women On The Move | Ashley Neybert

#1 Ashley holding her white cane description is in the body of the post.
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When I was little I had nystagmus and amblyopia. I wore thick “coke bottle” glasses but my family never referred to me as blind. As a result, I would run into a wall, look confused, and potentially hit the same wall again. I just “couldn’t see well.” At least that’s what the adults whispered. This, as they quietly debated the likely cuteness factor of a toddler with big glasses running into walls.

At around 4 years old I had eye surgery that supposedly fixed my problems. Sure, I periodically had to wear eye patches while reading or playing a computer game. This was more pleasant as my grandmother made me beautiful fabric ones to wear, but it hurt though. I never liked this because trying to read like that always hurt and I was so sleepy afterward. However, my parents said this would help so I could maybe someday do things like driving or getting a job.

The eye patching was only supposed to last so long. My sight was supposed to stabilize and become permanent but it never did. I went to an eye specialist who said it was a long shot as patching was usually effective up to age 8. But, in my case, as long as it still seemed to help that was good. Apparently, my brain was special so it became a typical cycle:

  • I’d get a maximum vision level that lasted a little while
  • then I would notice my vision decreasing,
  • do the patching thing,
  • and repeat the process.

Eye Issues & Chemistry

Eventually, the longer I did this cycle, the shorter it became between times I’d have to wear eye patches again. Then the light sensitivity I had started increasing as well after my surgery.

Pretty soon I was wearing sunglasses and hats most of the time and having to use patches pretty often. By this time, I was in college and studying to be a chemist. The sunglasses caused some issues with goggles as everything polarized and I lived in a world full of rainbows. I learned ways of coping with a portfolio of colored papers to put behind things. I’d shuffle through them until I found the perfect one for that experiment but it was slow and ineffective.

#2 Ashley in black and white flower print shirt image description is in the body of the post.
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My advisor suggested I talk to Dr. Cary Supalo, a blind chemist, to learn adaptations to help me become more effective. I learned some non-visual techniques which greatly helped my productivity.

Over time, after my transfer to Rockhurst University in Kansas City, Missouri I relied more on non-visual techniques. Everything looked strange to me. I noticed more issues until I ended up walking straight into the family car because I didn’t see it. At this point, for lack of better words, it hit me: I was going blind.

I started walking with a long white cane and learning braille. Then I joined the National Federation of the Blind and for the first time, it didn’t matter how much or little vision I had. There was no need to pretend I could see more than I could. I was accepted even though my doctors didn’t know what was going on.

An Answer And A Way Forward

Eventually, we learned I had a cortical visual impairmentMy doctor’s best guess was that when my eyes were physically fixed my brain didn’t fully get the message. Because of this, it was as if I never had surgery and my original conditions were left to progress. Despite this, I graduated with my Chemistry degree, then went to the Colorado Center for the Blind to learn more blindness skills. I am currently in graduate school working towards a PhD in Chemistry Education.

Since I have discovered myself in my blindness things have been the very opposite of dark. While working towards making science more accessible for the blind, I have made friends all over. In an effort to help others find confidence in themselves regardless of their situation, I have had the opportunity to do speaking engagements. I am also striving to do research to help the blind make their mark in science. In working towards my goals no matter what I have never been one to back down. I may do things differently, but as it turns out, different is not so bad.

Ashley Neybert Featured Image Description:

Ashley wears a cute black and white floral dress with a black cloche hat, sunglasses, and black ballet flats proudly holding her white cane. She is standing between two mole animals dressed as Chemists wearing lab coats and goggles. A pun on the Chemistry unit mols.

The photo of Ashley is in boldblindbeauty.com’s WOTM template. The entire template contains the photo and a transparent gray overlay with the quote in white text is near the bottom.

Additional Images:

  1. A headshot of Ashley holding her white cane. She wears a purple shirt, sunglasses, and a black cloche hat. Her cane is visible and she is sitting on a bench in Hawaii with tropical foliage behind her.
  2. Ashley in black and white flower print shirt and black cloche hat and shades feeling a tactile graph of voltage over time made from her Talking LabQuest equipment.
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WOTM 52 Featuring Suzanne Clarke

Suzanne Clarke Featured Image Description

Women On The Move Featuring Suzanne Clarke

“For me, my biggest fear was being seen. Not just on the outside, but on the inside… like really being seen. For as long as I can remember, I’d always kept myself small, blending in and not really wanting to stand out. 

Image 1 Suzanne Clarke image description is in the body of the text
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I’ve continually dimmed my light and played the wallflower. So much more comfortable than standing in the spotlight. Even though deep down, I knew there was something much bigger I could be doing. I didn’t know what it was, it was just an inner knowing that I’d been put on this earth for a much greater purpose.” ~Suzanne Clarke

Today we are pleased to share Suzanne’s story of grit and determination on receiving her devastating blinding eye disease diagnosis. Throughout this article are some of Suzanne’s favorite quotes that help to keep her grounded.

A Dream Fulfilled

I’d wanted to be a nurse since I was 4 years old. I achieved that dream and completed my Nurse training in 1987. I later found my niche in Hospice and community palliative care nursing. It wasn’t a job to me, I loved what I was doing. Yes, it was hard at times, but oh so rewarding.

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In 2016 I relocated to Dorset. Another dream of mine to live near the sea. A year later, I had a job all lined up in a hospice there, and all was going great. Then I broke my ankle, so I was out of action for a good few weeks.

“There’s no need to be perfect to inspire others. Let people get inspired by how you deal with your imperfections.” ~Ziad K. Abdelnour 

Later I had a diagnosis of osteoporosis confirmed. During that time I was under the hospital ophthalmic team. The opticians had picked up something on my retinas. My Dad has RP (retinitis pigmentosa) and there was concern over whether I had inherited it. I was in denial, so put it to the back of my mind to deal with when the time came.

A Diagnosis Confirmed

That time came way too quickly! A series of tests confirmed that yes, I had RP. Shortly after that, the DVLA (Driver and Vehicle Licensing Agency) asked for my license back. I was emotionally crushed for quite a long time and turned into a hermit. I didn’t leave the house much, because what if I fell over again and broke something? Additionally, I couldn’t see in the dark without a torch. If I could fall over in daylight and break my ankle, what damage could I do at night? That made it an incredibly long and dark winter – and not just the long evenings, my emotions were in a dark space too…

“Don’t lose hope. When it gets dark the stars come out.”

I couldn’t take the job at the Hospice. It was ok to drive to, about 45 minutes away. It was too far and difficult by public transport – which doesn’t mix well with shift work!

Image 4 quote and description is in the body of the post.
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I didn’t know about the RNIB Access to Work scheme back then. So I moved back to Hertfordshire where I’d lived previously for 40 years. I was looking for security and familiarity. If I was going to lose my sight, I wanted to be somewhere I knew well.

A Destined Calling

Fast forwarding a few months, I found help and support where I least expected it. An RP Facebook group and an awesome poet, Dave Steele!

I’d also been doing some intense internal healing work, in groups and one to one— thanks to Denise Barbi and Anna Hunt. I’d reached my rock bottom—the only way back was up! Along with that returned the niggle of serving my purpose, of getting my story out there to help others. I’d suppressed this for so long, but I couldn’t keep it or me hidden anymore. It was fit to burst.

“However difficult life may seem, there is always something you can do and succeed at.” ~Stephen Hawking

The urge to help, guide, support, mentor and teach others was too strong. I knew I had to be seen to do this, but it just had to be done. It started with social media and has gone on from there.

I am now working as a volunteer for the RNIB (Royal National Institute of Blind People). One of my many roles is to co-facilitate confidence building and living with sight loss courses. Also, a community connect role bringing people together and meeting up, so they feel part of a wider community and less isolated. I’m also going to be a roaming technical volunteer. Visiting blind/visually impaired people in their homes. Helping them with their technical equipment, which again helps them feel a sense of connection and belonging.

The Guest House

This being human is a guest house.
Every morning a new arrival.
A joy, a depression, a meanness,
some momentary awareness comes
as an unexpected visitor.
Welcome and entertain them all!
Even if they are a crowd of sorrows,
who violently sweep your house
empty of its furniture,
still, treat each guest honorably.
He may be clearing you out
for some new delight.
The dark thought, the shame, the malice.
meet them at the door laughing and invite them in.
Be grateful for whatever comes.
because each has been sent
as a guide from beyond. ~Jellaludin Rumi

So I have now made friends with my RP. I had to in order to move on with my life. What at first felt like the end of my world, was actually a wake-up call that broke me open at the core. It showed me that, for me, my life had to be shaken up from my foundations and rebuilt on more solid ground. It’s actually been a beautiful transformation. As painful as it was at the time. After all, you can’t make an omelette without breaking eggs!

Suzanne Clarke Featured Image:

Suzanne smiles brightly for the camera wearing dark-framed eyeglasses and sporting her sassy short silver hairstyle. She is wearing a red and black floral v-neck top.

Additional Images:

  1. A selfie of Suzanne wearing eyeglasses and a white v-neck top.
  2. “An arrow can only be shot by pulling it backward. So when life is dragging you back with difficulties, it means that it’s going to launch you into something great.” The image is an arrow above the quote on a yellow background.
  3. “True confidence doesn’t come from your not having any fear it comes from hurling yourself to act in spite of your fear.” ~Dr. Barbara De Angelis In this image the quote is above sand dunes against a dark purplish night sky.

Connecting With Suzanne Clarke On Social Media: