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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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New VIP Community Resource

New VIP Community Resource Featured Image Description is in the body of the post.

New VIP Community Resource

I’m pleased to announce my good friend, Victoria Claire has launched a new VIP Community Resource. VIP or ‘Visually Impaired Person’ is an acronym that’s been fondly embraced by fellow VIPs. The resource,
www.victoriaclaire-beyondvision.com, is a website and community where VIPs can find inspiration, support, and advocacy-related information.

Victoria, who is losing her sight to Retinitis Pigmentosa (RP) has an extraordinary story about how she found personal freedom in acceptance. Today, as an Ambassador for Retina UK, she’s a beacon of hope to others as she shares her acceptance journey. A journey, shared through her artwork, writing, and speaking engagements.

Losing eyesight can be a lonely and scary experience but it doesn’t have to be. If you or someone you know is going through sight loss I’d like to direct you to  www.victoriaclaire-beyondvision.com.

Victoria’s Social Media Platforms:

New VIP Community Resource Featured Image Description:

The image is a screen capture of Victoria’s website landing page. It includes her photo and the site’s logo. In Victoria’s photo, she is sitting and leaning forward, with her eyes downcast. Her straight blond hair parted in the middle frames her face. She is stunning in minimal makeup and is wearing a sleeveless black dress with a keyhole neckline. The logo is on a black background with white and purple text and wings on both sides of the text. The copy reads “Victoria Claire beyond vision | Inspiring Supporting Advocating for the VI Community.” At the bottom of the image are social media icons.

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Broken Glass From Pushing Boundaries | A Dedication

Broken Glass From Pushing Boundaries Featured image description is in the body of the post.

Broken Glass From Pushing Boundaries | A Dedication

If you happened to come across my ramblings over the weekend I excitedly announced my latest project. CAPTIVATING! a new and soon to be fully accessible digital lifestyle magazine.

In case you missed it, in my attempt to be clever I did a little Coming Soon teaser post. Then later in the day, Digital Magazine Accessibility Experiment IRL went into a little more detail. I was so proud of my accomplishment of being a “cool kid” by using the IRL acronym I didn’t realize until after publication I didn’t define the acronym. You’ve probably already known IRL is “In Real Life.” The first time I saw it I Googled it.

I’m not afraid to admit that I’m seldom in the know when it comes to pop culture, never have been. Case in point, as I was streaming some music while working on the follow-up post, one song caught my ear. It sounded so good I had to play it again and again and then looked up the lyrics. Here I’m thinking “wow, I found a new song”―wrong! I shouldn’t have been surprised that the song now at over 9 million hits came out last year such is the story of my life.

Dancing On Broken Glass

Okay to the point of this post. The song “Broken Glass” by Rachel Platten really spoke to my heart in light of what our team at CAPTIVATING! accomplished. One person in particular, Victoria Claire, made us all look good by creating our sharp logo. I had no idea she was a graphic designer in another life and when she offered to create the CAPTIVATING! logo, I accepted her offer.

#1 CAPTIVATING! Logo description is in the body of the post.
#1 CAPTIVATING! Logo

Vicky has appeared on Bold Blind Beauty several times as we’ve become great friends. The thing that gets me about this lady is her talent. I mean I don’t there’s anything she can’t do. She’s a sculptress, composer, singer, speaker, and if that weren’t enough she surfs, skateboards, and boxes. And, while I don’t like doing this, in this case, I think it bears mentioning, she does all of this partially sighted. Yes, Vicky is losing her eyesight to Retinitis Pigmentosa (RP). Like many of us who experience sight loss, she had to go through some stuff before reaching the point of acceptance. To be clear Vicky isn’t phenomenal because she does these things without seeing, she’s phenomenal because of who she is.

Generally speaking, society has a hard time understanding the capabilities of people with disabilities let alone those who are blind. Like anything else in life when the desire to learn is in place there’s almost nothing we can’t accomplish. I dedicate this song to Vicky and all of my persistent, strong-willed, resolute friends who constantly push boundaries―we are survivors!! Thank you!! Enjoy!

Broken Glass From Pushing Boundaries | A Dedication Featured Image Description:

In this photo, Vicky is sitting, leaning forward, and looking directly at the camera. Her straight blond hair parted in the middle frames her face.  Wearing minimal makeup she is stunning with pink frosted lip color and intense green eyes. She is wearing a sleeveless black dress with a keyhole neckline.

Additional Image:

  1. CAPTIVATING! logo: captivating, is written in white bold All capital letters except for the ‘V’ in the magazine name is drawn with an artistic style font in bold red and looks like a big check mark. At the end of the word, ‘captivating’ is a red bold exclamation mark. Under the text is the tagline “The power and possibilities of inclusion are limitless.”

Victoria’s Social Media Platforms:

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Charise Moore | Blind Beauty 64

Charise Moore Featured image description is in the body of the post.

The following edited piece was written by Charise Moore on an Instagram post. I was thrilled at the thought of sharing this because it’s full of wisdom and really challenges us to think about how we view people/situations. Sometimes things aren’t as they might appear. Where people are concerned, let’s check our assumptions at the door and ‘listen’ for the entire story.

Charise Moore | Blind Beauty 64

#1 Charise Moore image is described in the body of the post.
#1 Charise Moore

I can’t see puddles most of the time until I’m stepping in them. But yesterday during the flooding I couldn’t see that my street turned into a river. I wanted to SEE the water so I did what most blind and visually impaired people do I FELT it.

As I was standing there deep in thought my mom snapped this picture. It looks super creepy but I loved it. My shorts are uneven, my shirt is too big and I clearly don’t match but I love how she captured just a small moment of my everyday life with RP. So raw and vulnerable. 

I was 15 when I was diagnosed with Retinitis Pigmentosa (RP). Yes, I don’t “look” blind (whatever that means) but I am and everything I do takes more effort than you will ever know. I’m also awaiting the diagnosis of my deafness as I’m now deaf/blind. It looks like I do everything with ease because I’ve had years of practice. Years of having two different levels of vision and now I’m blind with hearing loss.

Currently, my vision is 20/300 in one eye and 20/40 in the other. And here is what I deal with on a daily basis:

  • I don’t have depth perception,
  • limited peripheral vision,
  • blotchy central vision,
  • completely blind in the dark,
  • dim lights cause eye strain,
  • flashing lights cause eye pain,
  • and I can’t see street rivers but I can still see. 

Even if I need my other senses at times to fill in the gaps, and I may miss something the first and fifth time I’m not complaining. Because with or without vision I am BLESSED.

Blind Beauty 64 Featured Image Description:

Featured image is a faux fashion magazine cover titled Blind Beauty. Charise Moore’s image on the cover is black & white. Charise is standing in the street in her bare feet under an umbrella while it’s raining. 

Blocks of text superimposed on Charise’s photo are: “Bold–She Keeps Pressing Onward, Blind–She Has Deeper Insight, Beautiful–She Sees To The Heart Of Others.” “Real Beauty Transcends Barriers.” “Makeup Trends for 2019–How To Maintain A Flawless Look”

Additional Image:

This photo is a close-up three-quarter profile image of Charise. Face devoid of makeup, she’s a natural beauty with a golden honey complexion. She is wearing a white tank top and has a black wristwatch on her left hand which is resting lightly against her face.