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.”
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.
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.
Losing Sight Helped Me FindBalance Amidst Extremes
I’d long forgotten what we were arguing about yet remembering the word he flung at me stung. Things got heated between us early one morning as my brother was driving me to work in my vehicle. Since driving had become difficult because I was losing my eyesight, I had voluntarily given it up.
As you might imagine turning over the car keys was not an easy thing to do. In Trading Car Keys For A White Cane, I talk about what it was like having to do so. Anyway, being relegated to passenger status, then ending up in a screaming match, in your own vehicle? Well, that’s just all kinds of wrong. I can laugh about it now but in the heat of the moment, I was beyond furious. So angry in fact, while the tears stung my eyes I wouldn’t cry and I didn’t say another word.
‘Judgmental,’ he said. Me, judgmental? Seething with anger and the need for a private meltdown, I lunged out of the Jeep and rushed into my office building. A lobby, elevator bank, and 11 floors later I arrived at my destination. It wasn’t until I was safely in the ladies room where I allowed myself the luxury of crying. Of all the words in the world, why would he call me judgmental? More importantly, why was I so upset about it?
If it Looks, Swims or Quacks Like a Duck
If you’re at all familiar with the Myers Briggs Type Indicator you are aware of the 16 different personality types. I’m an INTJ short for Intuitive, Introverted, Thinking, and Judging. Yup, there it is, that word ‘judging.’ At the risk of being totally transparent, I’ve always known this was a personal character trait or flaw perhaps? Being in my head is an awfully lonely place to be because I tend to operate on many ridiculous assumptions. For example:
Chaos does not compute. Structure is my friend and I wrongly assume that others will abide by my standards.
Nonsensical madness like the ‘poke’ feature on Facebook. Can someone please explain what this is for? Or chain letters or worse yet chain messages. My assumptions in these cases are baffling because. Why?
Being on time is being 30 minutes early. ‘Nuff said.
Rules that make sense (refer to the second bullet) are designed to keep us safe and efficient. Rules that don’t make sense need restructuring (refer to the first bullet). So why in the name of heaven would anyone blatantly disregard the 20 items or less in the express lane? The assumption here? Yup, you guessed it― criminal.
So I may be a teensy weensy judgy but in my defense, I:
Create order in chaos
Whatever I do, I do it to the very best of my ability
Special projects allow me to joyfully tap into my workaholic persona
I’m really good at creating a plan, a backup plan, and a contingency plan for the backup plan
The Toilet Paper Roll Test
Which do you prefer over or under?
Through the years I’ve been told I’m intense, quirky, obsessive-compulsive, and opinionated. Just a mere few years ago for any given situation, in my mind, it was either black or white. There was never an in-between or gray area. And balance? Well, balance never really fit into the equation because some of my views were distorted.
To some degree, when I began losing sight I started seeing things more clearly. Learning that blindness isn’t black and white helped me to understand that many of life’s circumstances share a similar philosophy.
Today, I’m still quirky, intense, obsessive-compulsive, and judgy, it’s who I am, however, I’m also more open-minded. Blogging and social media have enabled me to meet so many people who have such compelling stories it’s opened my eyes.
Today, I’m more mindful than ever that while we are biologically the same, each of us is unique. Even though we may share similar situations how we react to them is personal and requires patience and understanding.
Today, I purposefully seek balance and am getting better at living in the moment. So how’d I do in the toilet paper roll test? Growing up in a strictly ‘under’ household when I would happen upon a roll that was ‘over’ I was done. I mean who does this? And why?
It wasn’t until one of my sons came to live with me for a minute that I was put to the test. Apparently, he rebelled against his upbringing and became an ‘over’ person. For a while we’d battle with the toilet paper roll, then one day I just gave up. And you know what? Nothing happened. There wasn’t a meteor strike, an attack of the body snatchers or zombie apocalypse and the best thing? The toilet paper still worked!
Today, I can proudly say I’m an ‘over’ person and proud of it! Releasing, released me and allowed me to experience a freedom like none other.
It’s takes a village to raise a child. It takes a child with autism to raise the consciousness of the village.
Holly Lynn Connor, the young lady you are about to meet today, is mesmerizing. To give you an idea of what I’m talking about check out this YouTube video of her singing. While I’ve been following Holly on Instagram for some time, it was only recently that I learned her story. I knew she was blind, I knew she had autism, and I also knew she was extremely talented. What I didn’t know was her backstory and how she came to be who she is today. Today, Holly’s Mom, Katie, invites Bold Blind Beauty readers into her beautiful daughter’s life.Enjoy! ~Stephanae
On November 22, 2004, Holly Lynn Connor was born in Seattle, Washington with no complications. From day one, we noticed Holly never seemed to look at us and cried nonstop. We were assured by the pediatrician that her eyes were simply developing at a slower rate and not to worry. By four months Holly showed no improvement and was diagnosed with Septo Optic Dysplasia (“SOD”) and Panhypopituitarism (“Hypopit”).
A person with SOD has optic nerves that are small and poorly developed. Instead of having over 1 million nerve fibers from each eye to the brain, there are far fewer connections. Holly is rare in that she was affected in both eyes and could see little to nothing at birth. When Holly was diagnosed, there were minimal online resources and support groups. I felt alone in the world with no answers. To date, there are still no explanations as to what causes SOD.
Besides being blind, at an early age Holly displayed signs of autism (obsessive-compulsive behaviors, single words language, etc.). The combination of being blind and autistic really made for a difficult time, particularly the first 4 years. Until she was three-years-old, she:
wouldn’t walk outside,
eat solid foods,
go anywhere with fluorescent lighting,
sleep through the night,
wear shoes or any clothing below the knees or elbows.
And she cried pretty much nonstop.
Improvements Achieved Through Treatments
When she was four-years-old, we took her to China for seven weeks to receive stem cell treatments. The effect was miraculous. While the treatment was geared towards her vision, we saw a nearly 50% improvement in her autism almost immediately. Roughly two years later, her vision improvements also became apparent. Her vision increased from an inch or two to seeing contrast and movement up to 10 feet away.
Due to Holly’s successful treatment in China, we booked another round of stem cell treatment when she was twelve. This time it was to Panama. The trip to Panama was slightly more abbreviated at only 7 days. Since that visit, she has seen additional autism reductions. In addition, her vision, while still being blind, picks up contrast and movement up to 30 feet.
Two clear-cut examples of autism reduction are the reduction in Holly’s anxiety levels and the willingness to expand her diet. Pre-Panama her anxiety levels were nearly debilitating at times. As is common with most kids with autism, Holly would only eat about 5 things prior to Panama. Though she always objects at least once to a new food, now she eats nearly everything we give her.
Holly’s Musical Prowess
What makes Holly so unique and special is her musical talent, something we discovered at a very young age. When she was only a month old we played a Winnie The Pooh tape and she immediately stopped crying. After that, our house was filled with music 24 hours a day. It seemed to be the only thing that calmed her.
When Holly was 6 months old, she began playing the piano keys with her hands and her feet.
At age 1, she could count to 100, sing the alphabet backwards, and play simple notes on the piano. It was at this point where we realized she has instant memory.
By Age 2, Holly could play any song by ear on the piano.
At 3, we discovered she had perfect pitch, vibrato, and she could tell identify keys of songs on the radio.
When she was 4 we started piano lessons with a teacher specifically trained for kids with Autism.
By age 7, she could recognize and play complex chords on the piano. Holly also memorized and played songs on the piano after hearing them just once.
When she was 8, Holly picked up the harmonica and recorder. This was also around the time she started being ok in public. So we attended live theater and kids’ performances every weekend.
A Naturally Born Performer
Holly joined her first choir at her elementary school when she was 9 years old. She also began working with a vocal coach and attended her first vocal/piano classes. The facility worked specifically with kids with disabilities and paired them with typical kids. This year marked her first performance at a summer camp in which they highlighted her singing. The seed was planted for enrolling Holly in musical theater.
When Holly was 10, she had her first piano recital and first vocal competition. She sang opera and musical theater pieces and took 1st place for her age group. Shortly after, we moved to St. Louis for my husband’s job.
Holly started playing the cello in the school’s 5th-grade orchestra program and joined her first formal choir (STL Children’s Choirs). She also was in her first musical, Space Pirates. Being a new endeavor for everyone involved, she did her scenes sitting in a chair..
The following year, age 11, Holly started taking voice and musical theater classes. She was also cast in her second ever show, Seussical. This time she was doing limited choreography and even had a speaking line.
At age 12, Holly was cast in 8 consecutive shows with 3 named roles. The roles included Glinda in Wizard of Oz, Fairy Godmother in Cinderella, and Mama Ogre in Shrek. We also started her in ballet lessons.
Singing, Dancing & Acting
By the time Holly turned 13, it was an even busier year. She:
was cast in 10 consecutive shows with 4 named roles:
including Queen Victoria in a Little Princess,
Mrs. Darling in Peter Pan,
Bird Woman in Mary Poppins,
and Cinderella’s Mother in Into the Woods.
started taking tap lessons,
joined the school jazz band playing piano,
joined another choir, and
wrote her first original song.
That brings us to the present. At age 14, Holly is immersed in the arts 7 days a week when not in school. She is in 3 choirs, 2 jazz bands, acting and dance classes, private lessons for acting, ballet, tap, and piano.
Holly works out every morning on her spin bike. In addition, she also trains weekly with a personal trainer to help with low muscle tone. She is part of a tandem biking club half the year. At any given time she is in 2-3 musical theatre productions. Right now, she’s excited to be playing Medda Larkin in Newsies and Madame Aubert in Titanic.
Holly Continues Blossoming
The last few years of Holly’s development have been life-changing for Holly and for those around her. St. Louis musical theater community has been extremely accepting and inclusive. The directors have all been accommodating and understanding of both her visual and autistic needs. More than that though, the kids she performs with are more accepting than I could have ever imagined. They are always looking out for her and we never worry about her being in a safe space.
Now that she is fully immersed in the arts community in St. Louis and working with such a large number of kids, Holly seems to have friends everywhere she goes. For the first time ever, Holly found a best friend who’s become a huge part of her life. They talk every day, eat lunch together at school, and are in choirs and musicals together regularly. Her friend, Abby, has an effect on Holly which is hard to quantify. Through her friendship with Abby, Holly is learning more of what it means to be a typical teenager. She’s learning how to interact with others on a social level, and how to have empathy. Empathy is very difficult for someone with autism.
Being The Change
On January 1st, 2019 I began an Instagram awareness project, @365withhollyconnor, where I post Holly answering a daily question. Using the book, “Q&A a Day for Kids” by Betsy Franco, followers can learn about Holly’s life. They can also learn how she navigates the world being both blind and autistic.)
Recently, a girl from the local high school approached me. She told me that her twin brother has autism and Holly changed his life. Peers began befriending him as a direct result of Holly’s involvement at school and her social media presence. Holly is showing it’s okay to:
talk to someone who is blind and autistic
be friends with someone who is blind and autistic
be unique and different
Holly isextraordinarily talented andwe continuously keep her engaged with the world around her. Remaining involved in musical endeavors will position her for a greater opportunityfor future success in life. Through the many ways she interacts with the world, Holly continues to influence and change how people see her. Hopefully, this will translate into how they see, interact with, and accept people with all abilities.
Holly Lynn Connor Changes Viewpoints Featured Image Description:
In the featured photo Holly is outside under a white event tent playing a baby grand piano. She is wearing a light print dress and her long hair is draped down her back. Her white cane is propped up in front of the piano.
Additional Image Descriptions:
Professional headshot of Holly with long wavy red hair framing her pretty face. She is wearing an emerald green top.
Black & white photo of Holly as a toddler sitting on a piano bench with her hands and feet on the piano keys.
In this photo, little Holly is standing in front of the piano with her arms reaching up to play the keys. She is wearing a tan jumper paired with a white polo shirt and red (with white trim) Mary Jane shoes. Her blond hair is in pigtails.
A photo grid with two photos. The first one is of a theatrical performance with Holly and a number of her peers in costume on stage. Holly and two characters on either side of her are wearing southern belle type gowns. In the second photo, Holly is singing solo holding a microphone. Outdoor photo of Holly casually dressed in a black jacket, jeans, and a white graphic tee. Her hair is pulled back and she has bangs and is also wearing sunglasses.
This photo grid also contains two photos. In the first one, Holly and four friends are standing while posing for the camera. All five girls dressed for dance practice with black leotards and loose tops. Holly is in the center. The second photo is Holly with her best friend Abby. They are sitting on a pile of gym mats and Abby has her left arm around Holly’s shoulder.
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.
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.
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.
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.
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.