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RP Diagnosis Develops the WHY & Leads to Entrepreneurship

RP Diagnosis Develops the "Why" featured image description is in the body of the post.

RP Diagnosis Develops the “Why” & Leads to Entrepreneurship

“I felt so ashamed and stupid that I was visually impaired. That somehow people would think it was an inconvenience or a hassle that I couldn’t see in the dark.” 

~Hannah Steininger

RP (Retinitis Pigmentosa) was the diagnosis. I got into the car at the eye clinic and sat in silence with the devastating news I’d just received. It was a cold, blustery October day in 2008. I even remember how cloudy it was as the trees stood bare. We were parked directly in front of the window of the clinic. My eyes were fixed ahead on people sitting in the waiting room.

“Am I going to go blind?” I asked my mom after what felt like hours.

I felt my face get hot, as the tears welled up in my eyes. Dumbfounded, confused, and scared, I didn’t know what to think. You can never go back once you find out something like that. Immediately I felt so different. Everything started to make sense:

  • how cautious I was at night,
  • why I had always wanted to sleep with the hall light on,
  • why I hated movie theaters.

The list goes on and on. I was glad that it was all making sense, but at the same time, I wished I hadn’t found out.

Up until age 15, I thought everyone saw the way I did. Why think anything else? I felt so ashamed and stupid that I was visually impaired. That somehow people would think it was an inconvenience or a hassle that I couldn’t see in the dark. 

For about 8 years I decided nothing was wrong with me. I ignored the diagnosis of RP and I refused to take my pills regularly or tell anyone about my vision.

College Changed Things

Once I got to college, I would get into risky situations. Scenarios, like going out and drinking with my friends or walking home in dark, were commonplace. I fell and injured myself too many times to count. Crying
because I couldn’t see on the dance floor like everyone else, I’d leave, alone and in the dark. Why couldn’t I be like everyone else dancing so lighthearted. Going out became so taxing and so painful that I isolated myself my senior year of college.

After I graduated college and moved back to Minneapolis something in me shifted. I was sick and tired of feeling sorry and bad for myself. So much hope I had placed in research and retina specialists. When they told me there was nothing I could do and that my vision was getting worse, I was crushed. I began looking up alternative ways to help heal vision loss. That’s when I found micro-acupuncture.

For the past two years, I have been taking a more holistic approach in the way I manage my RP. I began eating a diet of anti-inflammatory foods, educating myself about how the systems in the body work together, and started going to micro-acupuncture.

As I have been opening up to others about my vision and started to advocate for the modifications I need, I noticed a lack of awareness about vision loss and people who struggle with it. So many people are affected by loss of vision at some point in their lives, why is it not more well-known and talked about in society?

The “Why” Turns Into Entrepreneurship

One year ago, I quit my corporate job and decided to pursue my passion. On February 16th, 2019, I launched Watson & Wilma, a line of ethically made intimates. I designed each piece and enlisted the help of local pattern makers to bring it to life. Each item is made-to-order and sewn in Minneapolis from 70% sustainable and organic fabrics.

Vision loss is an invisible disability but a major part of everyday, as intimates are a similarly hidden but important part of every outfit. A portion of each sale will be donated to the Penny George Foundation, to help provide holistic care and treatments to those with vision loss. My mission is to spread awareness about vision loss and for the visually impaired community. 

As expected, there are still hard days and days that I become discouraged about my vision, but my “why” keeps me going. I am doing my best to turn my pain into empowerment and allowing it to navigate my path instead of fear.

RP Diagnosis Develops the “Why” Featured Image Description:

A scenic outdoor shot of Hannah smiling while standing outside with a mountain range in the background. She is dressed casually in jeans, striped top, with hiking boots and a long warm-looking sweater. Hannah also has a black knitted hat on her head and her long brunette hair is draped over her outfit.

Additional Images:

  • Bamboo Bra: A black bra called Pick Me Up Around 8
  • Models: Two women (one brunette, one blonde) are wearing all of the pieces in Hannah’s current collection. The photo shows them hanging out in a living room. One of the models is sitting on a sofa while the other one is kneeling on the floor looking through music albums.

Connecting With Hannah:

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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