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Kay Haines | Me Myself and Eyes

Kay Haines Featured Image description is in the body of the post.

Kay Haines | Me Myself and Eyes

Kay Haines Guide Dog Training image description is in the body of the post.
Guide Dog Training

In August 2014, I was driving through some country lanes when I almost hit a tree that was in the middle of the road. I just didn’t see it until the last minute and luckily, managed to avoid hitting it. After this incident, I knew I needed to have my eyes tested again. While previous eye examinations indicated that my eyesight was fine, for some time I felt I couldn’t see things clearly.

With the expectation of being told I’d need to wear glasses full time, I got my eyes examined at Specsavers. Instead, the optician showed me an image of my eye and pointed to black areas at the back of my eye. I was scared at this point as I didn’t understand exactly what he was showing me.

He explained that from what he could see I had a disease called Stargardt’s. Coincidentally, his mother also had this disease. I asked him if glasses would help me to see properly, however, he said they wouldn’t help with my vision. He told me I needed to be referred to Moorfields Eye Hospital in London to receive an official diagnosis. I asked him outright if I was going to go blind; my heart sank when he said yes, I would! He told me that I would have to stop driving immediately.

Diagnosis Confirmation

I can’t even describe what I felt when I was told that I was going to lose my sight. My emotions were everywhere, I rang my mum and husband, I couldn’t stop crying! They thought I misunderstood but I told them to look up Stargardt’s disease online.

Over the next few days, I don’t think I stopped crying but I couldn’t just sit there any longer. Needing to know what I was facing, we contacted Moorfields and asked for a private consultation. I was seen by the doctor and it was confirmed that I had Stargardt’s disease. He couldn’t tell me much more until I underwent more tests to know what stage it was at.

I went through all the necessary tests over the next few weeks and within that time my sight deteriorated further. By September 2014, I was registered severely sight impaired (blind). My sight was measured at 6/60 in both eyes meaning I was 6 times over the legal driving limit. I was in total disbelief about how much my whole life had changed within such a short space of time. As a mother of two, one of whom was autistic, and I felt terrified for our future.

Since we were living in army quarters in Surrey at the time of my diagnosis, we decided to relocate. We would move back home to Wales to have the support from our family and friends.

Moving On

By December I started cane training. This difficult to accept as it made my loss of vision seem so much more real. It felt that everyone else would also be aware of my struggles. I hated feeling so vulnerable, however, I knew I couldn’t let this beat me and change the person I was. One way of coping that worked for me was to basically make fun of myself. We would joke that I was like Moses with my cane as crowds would part for me to walk through. Finding humor in these things helped me get through them.

Cane training was hard; I just never thought this would happen to me. In public, I would get odd looks from strangers if I got my phone out. At a music concert, I was harassed because the security guard let me skip the huge queue. Even with massive text on my phone, I was too scared to look at it in case people thought I was faking! I constantly worried about what people would think of me.

When my doctors told me about a charity called RP Fighting Blindness (Retina UK) it was the positive outlet I needed. I organized a successful music event where we raised £1200. After the fundraiser, I wanted to continue being positive and not let this disease define me as a person.

What It Means To Be Blind

Back home in Wales, I continued my cane training. I was terrified when I used my white cane because of the stigma attached to it. So I asked my support worker about the possibility of a cane in a different color. She ordered one for me from Canada and I now own a nice pink one! The fear was still there but it made me smile a little more.

As I continued to struggle with my sight loss, my support worker suggested I consider using a guide dog. I was approved and had few trial runs with different dogs to see how it felt using one. My fear of being out in public disappeared and I didn’t feel so vulnerable. It just felt that I was out walking a dog and I felt better supported. However, I decided to wait until my youngest is a bit older before getting one.

My main goal now is to raise awareness of what it means to be blind. I want people to realize that not everyone is in complete darkness. We can use our phones even if you see us also using a cane.

Often people say, “You don’t look blind?” or “But you can see?” These sorts of comments are why I want to share my story. Yes, I have lost my central vision, but I do still have my peripheral vision. I am not in complete darkness, but I am blind.

Kay Haines collage description is in the body of the post.
Kay After Bike Accident

Falling Down & Getting Back Up

There have been a lot of low points throughout my journey. I’ve fallen down the stairs a few times and was knocked over by a professional bike when crossing the road. But one thing I won’t do is let it get me down.

Four months after we moved back to Wales my Mum got ill and passed away from a brain tumor. She died 4 weeks and 5 days after she was diagnosed. My mum is the reason I want to carry on being positive and why I want to raise more awareness. I know it’s what she would have wanted me to do. She motivates me every day to get up and just deal with it. I want to help others in my situation to understand what it is to be blind. And most importantly to never give up!

I’m hoping my new blog Me Myself and Eyes will help others, not just with blindness but living with a disability. Surrounding myself with my amazing family and friends makes handling the bad days so much easier. I’m hoping that I can be the support that someone needs who may not have the support network to get through day to day.

Kay Haines Featured Image Description:

Closeup photo of Woman On The Move, Kay Haines, with gorgeous blue eyes and coral lip color. She has long dark hair framing the left side of her face.

Additional Images:

  • Kay is outside with her support worker doing guide dog training with a yellow lab.
  • This collage contains two images of Kay after she was hit by a bike. The first image shows her blackened right eye following the accident. In the second image, the eye is healing but still discolored.

You can follow Kay on:

Instagram: me.myself_and_eyes

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Facing Sight Loss With Hope & Grace

Facing Sight Loss With Hope & Grace featured image description is in the body of the post.

Facing Sight Loss With Hope & Grace

My sight loss journey has been long and sometimes painful; however, it has also been full of hope and grace.

Rebecca In Front Of
A Historic Building

I was born with cataracts on both of my eyes (bilateral congenital cataracts). Before I was a year old, I had nine eye surgeries to remove my cataracts and secondary membranes that grew in their place. I also had muscle surgery to keep my eyes from crossing.

When I was four, I developed glaucoma as a complication of surgery. Since my right eye had issues focusing, my doctor recommended eye patching. As a result, I wore an eye patch over my dominant eye for an entire year.

I’ve had fifteen eye surgeries as an adult. The scar tissue from all of these surgeries sometimes causes pain and discomfort.

I can only see colors and shapes out of my right eye and the field of vision in my left eye is severely limited. In addition to having no peripheral vision or depth perception, I also have severe migraines that center around my eyes. My vision fluctuates. On a good day, I can see 20/30 in my good eye with best correction. On a bad day, all I can see are clouds and shapes.

A New Dream & A New Purpose

In college, I suffered a crushing loss. My dream was to become a music teacher; however, an important music professor refused to teach me because he “didn’t teach students with disabilities.” His ableism caused me to need to change my major.

At the time, I was crushed by the loss of my dream. Eventually, I changed my major to English Education because I have always loved words. Sadly, I met resistance there as well. When I was student teaching, I was told, “We’re afraid to leave the students alone with a blind teacher.”

I believe that God put a new dream on my heart and helped to form a beautiful mosaic from the broken pieces of my life. I attended seminary in Washington D.C. and I am blessed to be able to say that I have now completed five years of effective ministry.

In May, my church covenanted with me to always provide me with a job and a congregation to serve. We call this “ordination.” It was one of the most special days of my life. I couldn’t stop smiling. At last, it seemed that I had found my place in the world and that my life had a purpose.

Glaucoma: The Silent Thief of Sight

Although I have been blessed to have benefitted from some of the best medical care in the country at Will’s Eye Institute in Philadelphia, my vision continues to wane. I take five eye drops four times a day and a pill three times a day in order to maintain my eye pressure.

Each year, I lose a little more vision. At thirty years of age, I’m unable to read a book with a regular sized font for any extended period of time. As a person who loves books, this loss is the most painful loss of all.

Beauty from Brokenness

Like many people who are disabled, I have a complicated relationship with my disability. I still have a long journey ahead of me to achieve full acceptance of my sight loss. For example, I only use my white cane when I travel because I need it for safety.

I don’t know what the future holds for me. I don’t know if I will someday become more comfortable using my white cane or if I will ever learn to read Braille; nevertheless, my heart is full of hope. The essence of my job is to share hope with a dark and broken world.

I am blessed to serve a congregation that I love dearly and a church that is striving to become a more inclusive place for people with disabilities. I am also blessed to have wonderfully supportive friends and a spouse who loves me very much.

One thing is for certain: Even with my blurry vision, I can see that the future is bright.

Rebecca Holland blogs about faith, diverse books, and disability awareness at BeckieWrites.com. She has written a chapbook entitled, Through My Good Eye: A Memoir in Verse.

Facing Sight Loss With Hope & Grace Featured Image Description:

Rebecca grins broadly with her hand on her hip as she stands on the Millennium Bridge in London. St. Paul’s Cathedral can be seen behind her. She wears a bright green coat.

Rebecca In Front Of A Historic Building

Rebecca smiles while standing on the stone steps of a historic building. She is framed by a large wooden door. She wears a blue and green A-line dress. 

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Adapting | The Key To Conquering Challenges | A Case For Accessibility

Adapting The Key To Conquering Challenges Featured image description is in the body of the post.

“I have plans for my life and I will adapt until I achieve my goals, even when things get tough. I know I have challenges just like everyone else, but I will conquer those challenges in a different way.”

~Rachel Carver

Today’s Woman On The Move, Rachel Carver shares real life examples of workarounds when accessibility is lacking. As people with disabilities, creative thinking is required to accomplish many nominal tasks. We are so used to figuring out ways to do what we have to achieve, we do it without thinking. This is our real life.

Adapting | The Key To Conquering Challenges | A Case For Accessibility

Blind since birth, I learned early that the sighted world is not going to adapt to you, so you better figure out how to adapt to it – whether you want to or not.

Like most 17-year-olds, I was stubborn. But being the only blind student in my small town high school made me different, and I wanted to blend in.

I used Braille for everything until my senior year of high school. My teachers told me to start listening to my books. Blind college students did not use Braille. I resisted. I was angry. Normal students carried books, not a weird tape player from the 1990s. I was in government class with the tape player. We had our homework, and this was my first time listening to the text. I hated every minute of it. My classmates flipped pages and chatted while I attempted to operate a clunky machine.

Just as my anger was subsiding, I dropped my tape player. It was dead. My sociology book report needed citations from the text. I was furious. A Braille book would not do this to me. In tears, I asked my teacher for an extension. I did not have time to order a Braille book, but I received the extension while the tape player was fixed. Then I grimly set about reading the book with the machine I came to despise and taking notes for my book report.

Out of all my college prep work, learning to do my school work by listening instead of reading was the hardest part. But without this ability, the first semester of college would have been a nightmare.

Creating a Way Out of No Way

My teachers were right; Braille college textbooks did not exist. I developed multiple tools for accessing my books. Sometimes, I bought the print book and scanned the chapters I needed to my computer. I used electronic books. Other students did not care about me using my laptop for tests and studying. It was normal to be different.

College further taught me to adapt to succeed. During my first semester, I signed up for a trip to Mexico. When asked if I needed a companion, I responded with a firm no. Then a special meeting called by my Spanish professor ruined my excitement.

I learned the university ignored my answer and hired a trip companion for me – without my knowledge and against my wishes. My jaw dropped. I could not speak.

In tears, I told my friends I was not going. This trip companion probably thought I was a clueless girl that needed help in the shower. My friends sympathized but pointed out the trip was paid for. My parents agreed with them and told me to make the best of my situation.

When we arrived in Mexico, we spent two weeks at a school studying Spanish, and the trip companion served as my reader. In her hometown, we rode in her boyfriend’s jeep and went to a restaurant off the beaten path. My hired companion became a friend. She learned about the capabilities of a blind person. I took my negative situation and made it a great experience for both of us. I have great memories of Mexico.

The Most Difficult Challenge

My most recent adaptation has been the hardest. I sat in the hospital waiting room, focusing on work to stop my brain from thinking about the surgery results. The doctor confirmed my fears; my husband’s left retina had detached. I cried because diabetes had started taking his eyesight and the life we knew was gone. I wiped my eyes and put on a brave face to tell my husband. We remained optimistic about the right eye, hoping the laser treatments would keep it stable. Three months later, I was back in that same waiting room, praying the retina in this eye was still in place.

I will never forget the last time my husband drove. It was snowing, and we took our son to the park. After arriving home, we put a pizza in the oven. Before the pizza was done, his right eye was a blurry fog. I was nervous but optimistic. Maybe he would drive again.

My heart ached watching him struggle to read our son printed stories he could barely see. I stood strong through four surgeries, trying my best to take care of a house and adjust to not having a driver. I could not step into our van because I would feel sadness. And I did not have time for sadness. I had to keep going.

Surgery improved my husband’s eye sight in one eye but did not give him back his keys. He is employed after deteriorating sight and four surgeries resulted in three months without work. We found other transportation methods. We grew closer as a family. I processed my emotions. I adapted to another change.

Continuing To Conquer

I have plans for my life and I will adapt until I achieve my goals, even when things get tough. I know I have challenges just like everyone else, but I will conquer those challenges in a different way.

Adapting | The Key To Conquering Challenges | A Case For Accessibility Featured Image Description:

Photo of Woman On The Move Rachel Carver is in boldblindbeauty.com’s WOTM template. The entire template contains the photo and a transparent gray overlay with the opening quote in white text is near the bottom. Rachel is positively beaming in the photo as she smiles broadly for the camera. Her cropped hair is pulled back from her face revealing a dewy fresh face with minimal makeup. She’s wearing a royal blue jacket over a black and white print top.

Connecting With Rachel Carver:

LinkedIn: @Rachel-Carver-APR

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Second Chance After Despair & Devastation

Grabbing Second Chances With Both Hands Feature image is described in the body of the post.

Second Chance After Despair & Devastation

“When Life Gives You A Second Chance, Grab It with Both Hands”

The lovely Nasreen Bhutta, my friend and CEO of Project Starfish America, was recently featured on Bold Blind Beauty. In today’s Women On The Move article, she shares a deeply personal account of love, loss, and second chances. Enjoy!

#1 Nasreen on a porch. Image is described in the body of the post.
#1 Nasreen On A Porch

I never thought I would be a recipient of a second chance even though it’s often said that life gives them out every now and then! Despair and devastation were my constant companions after going through an unexpected divorce and developing a progressive degenerative eye disease. Because of my diagnosis of Retinitis Pigmentosa (RP), I was literally staring blindness in the face. The added stress of becoming a single parent increased my struggles. My thought of the day (really every day) had become, “Why me?”

Trust, loyalty, honesty, affection, and love―all the building blocks of a healthy relationship―seemed broken and forever meaningless. Men lost their charm and were no longer relevant in my life. I was heartbroken, and the awareness I had of my involuntary singlehood permeated my soul.

When a relationship crumbles, it leaves behind a trail of sorrow, bitterness, and emptiness. I hated all of these feelings which were very hard for me to overcome! I was done with relationships especially after everything I went through.  Good-bye, forever!

My focus shifted from my needs to my daughter’s and giving her the best I could under the circumstances. I became a Super Mom. Pouring all of my energy into skate meets, swimming tournaments, Girl Guides, and other meaningful activities to keep her engaged. 

Long Buried Emotions Breathe New Life  

#2 CN Tower at night
#2 CN Tower at night

I never thought a second chance would ever come my way. But it did, many years later, in the form of someone special during a networking opportunity. This individual had an alluring voice, a boyish charm, and a gentle but firm demeanor. He believed in me, cared for me, and respected me. I will never forget the question he asked me that kindled a spark, “Would you like to be friends?” A simple question, but for me, a beacon of hope! “Wow, I can’t believe this…” I thought.

He was persistent with his encouragement and constantly challenged me in different ways. It was not only unnerving, but empowering and thrilling. “Wow, was this really me?”

As our friendship progressed, I found myself opening up more and more. I felt I was regaining the ability to care and trust again. There was something special about him that made it seamless and easy to bond. What I found amazing was my desire to invest my time and energy into this budding new relationship. When my emotions started getting the best of me, I found it to be the most extraordinary outcome. Emotions buried so deep, I thought they would never resurface again! “What’s happening to me?”

The Undeniable Impact Of Acceptance

#3 Nasreen On A Tandem Bike image is described in the body of the post.
#3 Nasreen On A Tandem Bike

Often, the feeling of being “understood” in relationships becomes the main foundation upon which two people form their bond. “We are on the same page, and we understand each other” are the words and emotions most desired. However, in my case, “understanding” and being “understood” wasn’t always the case. At times I just didn’t “understand” him at all. Sometimes I’d just roll my eyes and think “men are so crazy” as his actions, words, and behavior was so puzzling.  

“I accept you as you are” were the words that resonated deep in my soul, the first time I heard them spoken by him! “Acceptance” is a simple word, but it had a profound impact on me. My quirks and idiosyncrasies, my zest for life and overzealousness, and the main one, my disability, were all accepted! “Wow, could this really be?”

This pivotal moment made me realize that love is acceptance and is unconditional. Disability or not, the dawning of a new day had begun. I felt as though the warm sun had shone upon me and all my senses were awakened. I felt positive, and life has purpose once again!

No matter how late in life it happens, lucky are those who get a second chance. It is finally here for me, and I’m ready. If it comes for you, go for it! Don’t think! Just grab it with both hands and never look back. Let’s raise a cup of cheer for second chances. They are priceless!

Connecting With Nasreen:

Second Chance After Despair & Devastation Featured Image:

In this image Nasreen is standing on a patio deck on the shore of a lake in India. Her shoulder length brown hair is softly blowing in the wind. She is wearing a bright orange top with blue jeans and sunglasses. The lake can be seen in the background along with trees, a table and some chairs.

Additional Images:

  1. Nasreen is standing on a partially shaded porch. She is wearing sunglasses, a black skirt with a pretty black & white print top.
  2. As a Canadian resident, Nasreen shares this pretty night shot of the CN Tower illuminated in blue light.
  3. In Nasreen’s third photo she is riding shotgun on a tandem bike statue. This statue is complete with a statue passenger on the rear seat.