Tag: Retinitis Pigmentosa

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Auditioning for Bold, Blind, and Beautiful

Cover photo image 1 is described in the body of the article.

WOMEN ON THE MOVE

Editor’s Note:

I met Sylvia Stinson-Perez at an event in New Jersey earlier in the year and was immediately drawn to her. As I grew to learn more about her it was her authentic beauty that was so magnetic to me. When I first read Sylvia’s Women On The Move article I was deeply moved as her words resonated with me very much. After an extremely difficult past week on reading her story again this morning, parts of it felt like my own and I was reminded of my personal value. We can be so caught up in trying to be like everyone else we can fail to see our unique beauty which is considerably more than our exterior. It gives me great pleasure to introduce you to Sylvia Stinson-Perez.

Auditioning for Bold, Blind, and Beautiful

Photo 2 is described in the body of the post.
Photo 2

As a teenager in the 1980’s, I watched the soap opera The Bold and the Beautiful. I wanted to be considered bold and beautiful. Like any young woman, I struggled with seeing myself as beautiful. Now, add the fact that I was also visually impaired. I had been ostracized and bullied in school because of being considered different, which resulted in me being extremely shy. In addition, like many with low vision, I spent many years trying to pretend I was sighted. Today, as a 50-year-old woman, with many experiences, challenges, and opportunities, I now understand what it really means to be a bold, blind beauty… and I count myself as someone who is still auditioning, but closer every day to getting a leading role. 

Blind is a term many are uncomfortable with, and that includes people who are severely visually impaired. I was born legally blind. It was challenging, but I had an amazingly supportive and loving family. My parents pushed me to not let my vision impairment stop me from being a “regular kid and teen”.

Success Found In Unexpected Changes

For many years it was expected that my vision would not change and I would have the benefit of being able to navigate without a cane or guide dog, read regular print-even if really close, and be able to use my vision for almost all tasks but driving. However, in my mid-20’s, shortly after getting married to my husband of almost 27 years, I started noticing declines in my vision. Test results revealed I had Retinitis Pigmentosa (RP), which I knew meant eventual blindness. I was devastated… for a few months. But then I realized I had a whole life in front of me and that my visual impairment had not stopped me up to that point despite all of the challenges, so why would it let it now.

It took time, in fact, several years, but eventually, I became a proud blind person. Today I have very limited vision, not much more than light perception. And, I can honestly say, I have not let my declining vision ever stop me. I am a wife, a mother of a 20-year-old daughter, and I’ve had a great career in the blindness field.  

Positive Gains In Vision Loss

I came to understand and advocate that people who are blind are required to be more innovative, better problem-solvers, and smarter overall. We are not less because we cannot physically see. We have to learn to own blindness as a part of our characteristics, and one that makes us special and unique. I thought this is a persona I can certainly own. Yes, there are times when I feel pity, like when I have not been able to see my daughter, the beauty of nature, and even my own face anymore. But, a pity-party can only last for 15 minutes and it is back to life. Blindness has given me opportunities and strengths I am certain I would have never had as a sighted person. 

Bold to me represents being authentic and confident. As I said, I like many, experienced bullying as a young person in a public school setting where there were very few with disabilities. However, when it was time to go to college, I made a decision that I needed to be more outgoing or bold. I can admit that often I was pretending to be confident. I once heard a quote that has stuck with me:

“Courage is fear that has said its prayers.”

~Dorothy Bernard

Most who know me think I am an outgoing and confident woman, but the reality is that there are still moments when I just say a prayer and hope for the best. I have worked hard to ensure that I have good “blindness” skills, including orientation and mobility, technology, and social skills. These skills give me confidence in my ability to work, network, socialize, and live life to the fullest. Admittedly, I spent many years pretending to be more confident than I am, but in the past few years, I have come to understand that being authentic, with my strengths and challenges, makes me more human and real to others. I have also realized that I am much bolder as myself than as a pretend persona. 

Famous Last Words

Helen Keller said, “The most beautiful things cannot be seen or touched, but are felt with the heart.” Beauty is a term that women who are blind often struggle with, especially if we cannot see ourselves. We all want to be beautiful, and coming to the realization that beauty is way more than the outside appearance is critical.

Yes, I believe looking our best is important, and you will not likely find too many who love to get all dressed up, made up and glammed up more than me. But, I have learned that beauty is more often found in my attitude and how I treat others. I still want to be seen as beautiful, but the older I get the more I realize I want to be recognized for a beautiful person who is kind, compassionate, and wise. One of my life goals has become helping others find their beauty. 

Being bold, blind and beautiful is found in being our best selves!

Connecting With Sylvia On Social Media:

Image Descriptions:

  1. Beyond Sight Magazine Cover (Photo Credit: J. David Wright). The cover image is a headshot of Sylvia all glammed up at a formal event. The masthead is teal with “Beyond Sight Magazine” in black text. The dot on the ‘i’ in ‘sight’ is the eye used for our 2020 Year of Vision Campaign (described HERE). There are 3 lines of white text that say “Auditioning for Bold, Blind, and Beautiful.” In the bottom right corner is a teal circle with an illustration of Abby rollerblading. She has on a black crop tank top complete with her logo on the front with black shorts, and gray & teal roller blades. And of course, Abby wouldn’t be Abby without her signature explosive hairstyle, and “Women On The Move” is yellow text under the circle.
  2. Sylvia in front of a building shows her walking with her white cane in front of the building where she works at MSU
  3. Sylvia and daughter Olivia (Photo Credit: J. David Wright), shows her and her daughter all dressed up and attending/hosting a Dining in the Dark event in 2017. The event was hosted by Lighthouse for the Visually Impaired and Blind, Inc. (LVIB).
  4. Sylvia’s family pic shows Sylvia with her husband Roger and their daughter Olivia at Olivia’s high school graduation in 2017.
  5. Sylvia in Las Vegas is a recent photo (Feb. 2020) in Vegas
CREDITS:
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Monumental Moment: The Passage To Acceptance

Beyond Sight Magazine cover is described in the body of the post

CANE ENABLED

Editor’s Note:

At various points in my sight loss journey, I volleyed between acceptance and denial which are totally human and natural responses to trauma. Today’s post while written for GAAD (Global Accessibility Awareness Day), deeply touched me and is one of the reasons I created Bold Blind Beauty. When we talk about awareness a huge part of it is simply seeing us and respecting us as part of humanity. Awareness for anyone with a disability is not a trend, it’s our lives. The tools we use to live our lives represent strength, resilience, and independence.

The young woman you are about to meet today, Mady Amirah, has used her white cane for several years. What makes her post monumental is that this is the very first photo of her posing with her cane. She is a Boss! ~Steph

Monumental Moment: The Passage To Acceptance

Image is the same as the header without the cover and Mady is sitting facing the camera.
Mady Amirah

For Global Accessibility Awareness Day, I’m posting my very first white cane picture. For those of you who don’t know, I’m visually impaired and was born with a genetic condition called retinitis pigmentosa (RP). Without this white cane, I would be royally screwed after sunset, in any dimly lit area, or in novel environments. Although I don’t like to admit it, I am an independent woman because of devices such as this. I definitely hope this opens up a door for more accessibility posts in the future.

Global Accessibility Awareness Day always gets me reflecting on how I am able to be the boss I am. It’s days like these when we are reminded of the importance of raising awareness, and it’s my goal to raise awareness for visual impairment every day of my life. I’m applying for my MA in special education to do just that. I’m starting a blog to use my experiences to inspire others.

P.S. This whole outfit is a Ross & Marshall’s mash up.

Can you remember your monumental (literal or metaphorical) white cane moment?

Connecting With Mady

Image Description

  • Header: The Beyond Sight Magazine cover has a gray/white marbled background. The date & edition numbers are in the upper right corner in black ink. Mady’s photo is aligned on the right margin with the background appearing on the top, bottom, and left margin. In this photo, Mady is smiling, sunglasses atop her head, and holding her white cane while sitting on a cement wall. She is wearing a white tank top with blue jean shorts, sandals, and a mauve sweater exposing one shoulder. “Beyond Sight” is in large black text and a teal-colored circle with Mady’s name is in yellow text.
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Making A Difference In A World Of Hurt

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HEALTH & WELLNESS

Resilience

It was 25 years or so and I was a young mom sitting on our front porch. It was a summer morning and I had just learned Orientation and Mobility Training. Yet this morning, my first thought wasn’t the newfound freedom I had felt with the cane. I was experiencing the grief and needed to take a pause and experience all the feels that went with that.

~Becky Andrews

Look up, move forward

Image is described in the body of the post
Photo Credit: Rick Egan | The Salt Lake Tribune

Let me introduce myself, my name is Becky Andrews. I am blind as a result of Retinitis Pigmentosa (RP) diagnosed at age 18. I have been blessed to travel with a guide dog by my side for the past 23 years. As I type this, my third guide dog, Georgie is at my feet. My husband, Steve, and I have been married for 36 years (we are a pretty great team) and we have two adult children. I love living an active life. We love to tandem bike… more on that to come, run with a tether – have run 9 marathons with the tenth to be the NYC Marathon again in November. I also love to hike and travel. I wrote my memoir, Look up, move forward in June 2016. Currently, I am working on completing a workbook: Cultivate Resilience – one of many courses that I teach in my practice.    

On a professional level, I am a small business owner – Resilient Solutions, Inc. A licensed clinical mental health counselor myself, the practice is an individual, marriage, and family therapy, business which employs 18. Five years ago, we established a small nonprofit Oasis Center for Hope with its mission to educate, support, and empower individuals, families, and communities experiencing a loss. As a part of this nonprofit, four years ago I fulfilled a dream to establish retreats for women who are blind and low vision — The Daring to Own Your Story™ Retreats. Our 8th Retreat is scheduled to be held this July. These retreats are a combination of adventure, connection, empowerment, and truly owning and celebrating our stories.  

When Saying ‘Yes’ To Life Is Suspended

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The Journey Begins

At the time of the pandemic, Steve, and I were into a bucket list goal – cycling across the country on our tandem bike. It began on March 7, we put our back tire in the Pacific Ocean in San Diego and were scheduled to put the front tire in the Atlantic Ocean 52 days later April 27 – the day before Steve’s birthday. We put our careers on hold as much as possible for this endeavor. This time of cycling through the country was anticipated to not only be an amazing physical feat yet also further clarity on where else to put the energy of YESSS in my life.

As we began this journey our tour began to give us updates on what was happening in our world and we continued to take the necessary precautions also very aware as schools, stores, campsites, and hotels were closing around us. On March 17 which was a day of a lot of climbing, almost to the continental divide and 571 miles into the ride, we arrived in Tombstone, Arizona. It was on this evening we learned that our bucket list item was to be suspended. Although we understood, we were so disappointed. The hotel shut its doors after we checked out.

I’ve now had a month to reflect on this disappointment since being home while quickly needing to bring our office up to speed on Telehealth Therapy. Because I wasn’t scheduled to see clients until May 4 with our bike ride, I’ve also had some time to study, learn, ponder, reflect, and offer courses to individuals throughout the country on Cultivating our Resilience.  

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Climb to Tombstone, AZ 

Getting Through The Pain

This is such a unique time for us all. It is a time of uncertainty, collective grief, ambiguous losses, and anticipatory grief. I am feeling such compassion for those who are suffering at this time and experiencing such grief. As of writing this post, our family is healthy and all employed of which I am so very grateful. I also recognize that this could change.  So many are hurting. As I search to find ways to make a difference, I think of the message: Do what you can with what you have where you are.  

It is also a powerful time to take a pause and reflect on what is important to us, what we are grateful for and what we want to bring back into our lives after we return to our sense of new normal. I have found myself taking many pauses and reflecting deeply on these questions. 

Up to this point, there has been much drive, hard work, perseverance in achieving my dreams as a blind woman. I know firsthand discrimination, access denial, and the extra effort it takes to reach those goals. There have been times where a ride to the office on Lyft may entail access denial with my guide dog leading to a phone call to the corporate office and extra advocacy to follow up before summoning another ride and getting to the office or a follow up later. I also believe my journey that has occurred through RP has been one of growth, learning, resilience and so much joy. It has given me a depth and compassion that I wouldn’t trade. This quote resonates with me and I’m grateful for the beauty that has been added by this journey.  

The most beautiful people we have known are those who have known defeat, known suffering, known struggle, known loss, and have found their way out of the depths. These persons have an appreciation, a sensitivity, and an understanding of life that fills them with
compassion, gentleness, and a deep loving concern.
Beautiful people do not just happen. 

~Elisabeth Kubler Ross

The Power Of Choice

My journey in the past several years has been about movement, growth, reaching for that next goal, some pretty remarkable awards, professional expansions, and many adventures. So very grateful.  

However, in the past month since returning home from this bike ride with this significant pause in our lives, my thoughts have turned to another significant day. 

It was 25 years or so and I was a young mom sitting on our front porch. It was a summer morning and I had just learned Orientation and Mobility Training. Yet this morning, my first thought wasn’t the newfound freedom I had felt with the cane. I was experiencing the grief and needed to take a pause and experience all the feels that went with that. After some time on the porch doing some reflection and shedding a few tears and reassuring my husband, I would be okay, he could leave for work.

I took that next step that Victor Frankl describes as: “The last of all human freedoms the power to choose one’s own way given any set of circumstances.” I chose to once again feel empowered, to see RP as an opportunity to grow and have new adventures. I got up from the front porch morning of grief and went inside. I told my kids we were going on an adventure on the bus to meet dad for lunch.  

Feeling The Feelings

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During this past month, as I have returned home and resumed meeting with clients a common theme has emerged: grief and loss yet also gratitude and gains. We are experiencing grief in various ways. My words have been consistent with clients. Give yourself permission to feel. Honor the feelings you are experiencing and give them the space they need to process with self-compassion. Only then can you take that next step to action. As much as we want to we can’t bypass this step in our journey to Look up, move forward.  

In this time of pause of feeling, there is much duality of emotions — both loss and such deep gratitude. Both clarity of what matters and missing events that kept me busy. Both simplicity and comfy sweats and missing dressing up and hustling into work. Both intense compassion for those around us and uncertainty for our own situations.  

I’m having some clarity of what is next for me as I Look up and move forward. I have loved having the opportunity to speak to large and small groups, that will look different in the months to come. I just accepted my first Conference Presentation by Zoom. I have loved teaching my Cultivate Resilience Courses to people throughout the country by Zoom. Again, a unique, new experience. I dream of doing a podcast and simply asking the question tell me your story.  Let’s dare to own it and share it with others. We can learn so much from others. I look forward to continuing to manage our business, expand and plan more retreats as soon as we are once again able to travel, and continue to meet with clients individually. The journey with a client as they navigate life’s losses, traumas, and find their resilience is inspiring.  

Helping Others

All in all, my next step, I hope, is to reach back and help someone along their journey. So many have been there for me along my journey. When I was denied a position that was promised to me over the phone when he realized I was blind, a mentor picked me up and helped me navigate the private practice field. When I was denied access to a grocery store because of my guide dog, a mentor helped me navigate and taught me to advocate for myself. Others reminded me I could do it and helped me instill that in myself.  

In life, we simply keep looking up and moving forward a step at a time; perhaps a pedal at a time. Sometimes bucket lists are suspended and other insights, lessons learned, come in the pause.  

What has happened in my life since that first cover on Bold Blind Beauty Magazine where I was climbing to the top of a challenge course? Oh, so much growth, learning, expansion both externally and internally. So grateful for the power of the stretch and for the opportunities to continue to Look up and move forward.  

Connecting With Becky:

Image Descriptions

  • Header Image: Scrabble tiles spelling out the word ‘resiliency.’
  • Rick Egan | The Salt Lake Tribune L-R: Suzette Hirst, Becky Andrews, and Brenda Petersen. Hirst and Peterson ran as Becky’s guide in the Boston Marathon, and take turns guiding her, nearly everyday, as they run in their Bountiful neighborhood. Friday, July 23, 2015.
  • The Journey Begins: Becky and Steve in matching tops are standing with their tandem with back tire in the Pacific Ocean before a climb to Alpine, CA. Day one 42 miles.
  • Climb to Tombstone, AZ: Steve and Becky are on their tandem in their biking gear. A mountain range can be seen in the background.
  • Becky is sitting on outdoor steps next to her guide dog, Georgie, a gorgeous yellow lab.  
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Stopping Traffic…With My Pride

Image is described in the body of the post.

CANE ENABLED

Editor’s Note

As we continue practicing physical distancing, I hope you and your loved ones are well. I couldn’t quite sum up how I’ve been feeling lately until I saw the word “melancholy” earlier today. What’s been helping me deal with the pandemic, is being present and truly appreciating each moment as it happens. My life has been so much more than I ever anticipated and I embrace it all; the ups, downs, mistakes, heartbreaks, everything. Who knows how different my life would be had I not endured my experiences? I’ll never know the answer to this question and it’s alright because today I choose to be better than I was yesterday.

Even during a pandemic life presses onward and we can always learn new lessons to enrich our lives. In today’s post, you’ll hear from Catherine Harrison about accepting help no matter how far we’ve come. I’m also happy to announce that Catherine will be an ongoing contributor to Bold Blind Beauty. ~Steph

Blindfolded for 8 hours a day I learned to travel about totally independent using only my wits, a cell phone,
my four other senses, and my white cane.

~Catherine Harrison

Stopping Traffic…With My Pride

Image is described in the body of the post.

I’ll bet many women have imagined looking so fabulous in an outfit that heads turn and traffic stops just to watch them walk past. So, I guess it counts that in downtown Austin, Texas I brought traffic to a dead standstill at the intersection of 6th Street and North Lamar. Unfortunately, it was not because I was wearing a fabulous Oscar de La Renta dress or looked particularly on point…it was because of my white cane and my location.

With the progressive loss of my eyesight, due to RP (Retinitis Pigmentosa), I attended a school for blind adults in Austin, Tx to get the skills I needed to navigate life visually impaired. One of the daily classes I attended was mobility training. Blindfolded for 8 hours a day I learned to travel about totally independent using only my wits, a cell phone, my four other senses, and my white cane.

Near the end of my 4 months of training, I was sent downtown on an errand. Feeling very confident in my skillset I navigated public transportation like it was my job, maintained my sense of direction like a Navy SEAL, and even stood in line at the bank to complete the task. On my return, I had to cross the intersection of 6th street and North Lamar.

I listened for the flow of traffic then set off walking confidently behind my cane to what I thought was the opposite corner. After walking a bit, I stopped and waited, listening for the traffic pattern to confirm I had reached the other side.

Nothing…all around me I heard nothing. No roar of cars speeding past me, only the sound of idling engines. Several minutes passed and I heard a car door close, then a woman touched my arm and asked me if I needed help. “No, I said…I am doing great thanks”. Well clearly, I was not doing great but I was the last one to figure that out. The cars were not moving because I was standing smack dab in the middle of this busy intersection. No one was honking or yelling at me…they were just waiting as if holding their breath and cheering me on.  

Yes, I did eventually make my way out of the intersection and I could almost hear the collective clapping from those who wanted me to succeed. I learned a big lesson that day, not to let my pride get in the way of accepting help from others. I also discovered that when I let others see me fail it encourages them to know that if I can rise strong and navigate the hard times then so can they! 

Connecting With Catherine:

Image Descriptions:

  • Photo credit Julia Wagner at Feather and Root Photography.
  • The header image of the Beyond Sight Magazine cover has a gray/white marbled background. The date & edition number are in the upper right corner in black ink. Catherine’s photo is aligned on the right margin with the background appearing on the top, bottom and left margin. With short blonde hair, Catherine is on the cover wearing a white shirt. She’s sitting with her arm on a sofa and her eyes are downcast.“Beyond Sight” is in large black text and a teal-colored circle on the lower left corner of the photo has yellow text that says “Catherine Harrison.”
  • In this image of Catherine relaxed in a chair we can see her full outfit; white shirt with blue jeans and gold jewelry.