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Facing Down The Silent Thief of Sight

Image is described in the body of the post.

WOMEN ON THE MOVE

I knew something was wrong, but I assumed that perhaps all I needed was a prescription of some kind. Still, I was nervous when I got to the ophthalmologist’s office. And with good reason, as it turned out. I was in my early 30’s and I was diagnosed with end-stage glaucoma.

~Helen Gentry | Woman On The Move

In early 2014, I knew something was wrong with my eyes.

A haze had appeared around fluorescent lights in public buildings. Also, my vision always seemed blurry no matter how often I blinked to try to clear it. One day while walking quickly in front of my office building, I ran into a sign and was knocked to the ground. That got my attention! “How could I have not seen that?!” I wondered.

I was busy working fulltime, attending graduate school and raising a daughter, but I finally couldn’t ignore my symptoms anymore. So I scheduled an appointment with an ophthalmologist in my small town. I knew something was wrong, but I assumed that perhaps all I needed was a prescription of some kind. Still, I was nervous when I got to the ophthalmologist’s office. And with good reason, as it turned out. I was in my early 30’s and I was diagnosed with end-stage glaucoma.

Glaucoma is one of the leading causes of blindness worldwide and it is called the “silent thief of vision” for a reason— first the peripheral vision leaves, and the patient doesn’t notice because the loss is so gradual. Once the central vision begins to be affected, alerting the patient to the fact that something is wrong, a significant loss has already occurred.

Heartbreaking News After Diagnosis

After receiving my diagnosis, I also had to digest an additional fact: My condition had resulted from medical malpractice. My optometrist had prescribed a steroid eye drop that I was instructed to use up to four times a day to treat discomfort caused by eye allergies. I now know that this medication is intended for use following cataract surgery. It is not intended to be used for more than 10 days. I used it for 13 months. I also now know that patients who are using this drug are supposed to be closely monitored by a medical professional, and if eye pressure increases, they are to discontinue use immediately.

I was not closely monitored nor was I informed of the risks of using the medication. Instead, I was assured that it was FDA approved and perfectly safe. I was told that the eye allergies could cause some blurriness, which was why I was unconcerned at first about the changes in my vision once I finally did begin to detect them. Just a short time before this medication was prescribed, North Carolina changed state law to allow optometrists to prescribe medications, although they have not been to medical school as ophthalmologists have. My optometrist failed me, and so did my state by allowing this atrocity to take place. Every time I raised the bottle to my eyes thinking that I was being responsible and helping myself, I was giving myself an incurable disease.

Chain Reaction Set In Motion

In the months that followed my diagnosis, I experienced anger and overwhelming grief. I also began to fight to retain my remaining vision. I was a patient at Duke, UNC and Johns Hopkins. At Duke, I underwent trabeculectomy surgery in which a metal shunt was placed in each eye to help drain the pressure. The two surgeries, which I was awake for, were daunting and required a lengthy recovery during which I had to try to stay off my feet.

After the second surgery, I felt pressured to return to work too soon. Once I did, my supervisor put pressure on me to give a brief speech at a large meeting of leadership, faculty, and staff at the college campus where I worked. When I took the podium (a mere week after my surgery), I began shaking uncontrollably. I couldn’t speak and I suffered what I now believe to be a nervous breakdown of sorts. I now understand that major surgery can easily lead to temporary emotional instability, but no one had told me that at the time.

A Difficult Aftermath

In addition to feeling pressured to return to work, I also experienced workplace discrimination in a variety of ways. My boss would periodically stop me on campus and jokingly ask me if I could see how many fingers he was holding up.

A different supervisor condescendingly asked me if I had any doctors’ appointments coming up. His reason being that he needed to be aware if I would be feeling emotionally unstable in the days ahead. He then informed me that he had a wife and daughters and therefore understood the emotions of women. He also said that I could talk to him if I needed to, adding that the word “panties” was a regular part of his vocabulary. It was obvious that he thought that my breakdown had not stemmed from receiving a devastating medical diagnosis and undergoing a terrifying surgery, but it was because I am a woman. No woman should ever be cornered by her male boss while alone in his office and be encouraged to talk about her undergarments.

Sometime later, I received my “TPD discharge” from the US government. This was a letter in the mail stating that I had been found by a government-contracted medical professional to be “Totally and Permanently Disabled.” (Let those three words sink in for a moment…..I can see them now, in bold font across the top of the document.) The letter continued to explain that my outstanding student loans were being discharged completely. As a totally and permanently disabled person, I was not expected to have significant work, so I was not expected to pay back my student loans.

Reclaiming A Vibrant Life

Fast forward to the present, and I am not totally and permanently disabled, nor have I ever been. I am happily self-employed as a life coach, franchise broker, and realtor. I get to partner with my clients to support them in building the life that they want to lead. Meanwhile, I am living my most vibrant adventurous life.

I love being an active mother, wife, and friend. I am currently enjoying traveling as much as possible and seeing as much of the world as I can. I enjoy hiking, taking painting classes and cooking. Soon I will be starting piano lessons. There is so much I want to do. I am filled with gratitude every day that I get to live in the gorgeous mountains of Western North Carolina. My mission through my work and volunteer service in my rural community is to see people, particularly women and families, empowered and lifted out of poverty.

Healing

I’m currently 38 years old, and my worst-case prognosis at one time was that I will be completely blind by the time I am 50. I do not accept this prognosis. (At one point I had a friend strongly encouraged me to simply accept my prognosis, and I concluded that no real friend would encourage another to voluntarily sit down, shut up and go blind without a fight.) I understand that many patients report feeling that it is helpful to them to accept their diagnosis; however, I choose to draw my strength and courage from fighting and defying mine. This is a daily journey of faith in Christ and His healing power. The distinct discrepancy between my medical records and the kind of life that I actually experience on a daily basis is nothing short of a miracle, and I want to continue to be a walking miracle all of my days.

Image Descriptions:

  • Featured image taken last summer near Helen’s home in NC shows her standing outdoors. A pretty brunette with shoulder-length wavy hair, Helen is wearing a print tank top and skirt. The waterfall behind her makes a beautiful backdrop.
  • A gallery of two black & white photos (before and after) of Helen from her surgery at Duke. In both photos, she’s on a bed in her hospital gown. In the post-surgery photo, her left eye is bandaged.
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Sword, Lightsaber Or Broomstick?

Image is described in the body of the post.

WOMEN ON THE MOVE

So indeed, there are days I choose to use my white cane like a sword. I use it to cut away at the misconceptions people have about my capabilities. I cut through the limitations as if they are coiled thick vines, which others place on my dreams.

~Catherine Harrison, Women On The Move

Fantasy To Reality

There are days I wish my white cane was a sharp sword, able to cut through the complexities of life coiled around my ankles like thick vines.

Or perhaps if it were a lightsaber that glowed in the dark and could vaporize the enemies of my greatness like fear, self-doubt, impatience and my horrible spelling.

Or better still if I could ride my cane like a magic broomstick and use its power to turn my competitors into toads.

But it’s not any of those things.

My white cane is one of the tools I use to navigate life in pursuit of my dreams.

It not only identifies my handicap but it gives me the freedom to travel alone.

Embracing Tool Crushed Fear

I will admit, I was not too happy about having to use it at first. I didn’t like how people stared at me; I didn’t like “looking blind.” It was humiliating having to re-learn how to safely cross the street using a cane. But after I ran into enough walls, stepped out in front of a car and repeatedly fell down steps I got over my pride and embraced the tool designed to help me.

Now, it takes lots of training and practice to travel by myself without getting lost or run over, and I have certainly made my fair share of mistakes. But the experience I gained through the years has taught me to pay close attention to the cues my white cane gives.

My cane is designed to go out in front of me to find the obstacles, curbs or steps I am not able to see. It is long enough to give me two steps to either stop or change direction.

The metal tip makes a noise as it strikes the ground allowing me to hear the difference between a smooth sidewalk or street pavement, carpet or tile flooring. It’s painted with white reflective material for travel at night and comes in several styles for different purposes.

My cane, however, has one drawback…it only works when I follow, letting it go ahead of my steps. It doesn’t work if I drag it along behind me, then wonder why I ran into a wall or fell down a step. I have to unfold it, put it out in front of me, trust what I hear, respond to the obstacles it finds and never take a step forward without it.

Acceptance Is My Superpower

So indeed, there are days I choose to use my white cane like a sword. I use it to cut away at the misconceptions people have about my capabilities. I cut through the limitations as if they are coiled thick vines, which others place on my dreams.

There are also days I choose to use it as a lightsaber. It is a glowing symbol of my independence, my ability to rise strong and defeat my inner enemies.

And better still are the times I use my cane like a magic broomstick. I learned early on in my training just how much power it has when you swing it in a wide arc…people WILL get out of your way! It makes me feel a little like Moses parting the Red Sea when I can clear a path through a crowded airport.

I am fearlessly equipped to walk (in high heels) with my cane in front because I learned to use the tool that will get me where I want to go.

👠Don’t let fear alter your steps.

👠Excuses will kill dreams.

👠Choose your tool and use it!

About Catherine:

Catherine was diagnosed in 1995 with Retinitis Pigmentosa (RP), only weeks after returning from serving for two years on the mission field in Nigeria, Africa. She has been a national public speaker and article writer for several magazines, sharing her story of learning to walk with strength and faith behind a white cane.

Catherine holds a Bachelor of Science degree in Nursing from Baylor University and had a wonderful career as an operating room nurse. She is a former ballerina and studied dance at Julliard’s School of American Ballet in New York. She is currently a professional commercial print and fitness model with DMG modeling agency in Dallas, Tx. She is the proud mother of 3 grown sons and wife of Plastic Surgeon, Dr. Craig Harrison. Catherine serves on several non-profit boards and regularly volunteers in her local community.

Her mission is not only to successfully work as a model, who happens to have a visual impairment but also to empower women of all ages to step into their strength, regardless of their circumstances, with poise and courage.  

You can find Catherine on:

Image Descriptions:

  • Photo credit Julia Wagner at Feather and Root Photography.
  • Featured image shows Catherine walking with her white cane wearing a white long-sleeved keyhole dress.
  • In this headshot with short blonde hair and mesmerizing green eyes, Catherine is wearing a blue halter dress. The neckline on the sleeveless top is cut to partially expose Catherine’s shoulders. 
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Becoming A Blind Photographer

A black & white image of a long stretch of railroad track taken from the caboose.

Introduction:

When I began Bold Blind Beauty my original intent was to empower others by sharing lessons I learned through my sight loss. As this site has evolved, however, many of us are beneficiaries of empowerment from the sight loss stories of others. Each of the Women On The Move (WOTM) and Blind Beauties featured here has unmatched strength and resilience. Every story is different as we walk separate paths yet the one thing we share in common is a change in our perspectives.

Experiencing losses in life is universal. How we each deal with our losses is the difference between living and thriving as Megan Sinks, today’s WOTM explains.

Becoming A Blind Photographer

There are events that draw very bold lines between your life “before” and your life “after”, in which nothing is the same on the other side. This is my story.

~Megan Sinks

The Body Battles Itself

Megan & Her Mom (#1 Supporter)
Megan & Her Mom (#1 Supporter)

My line was drawn when I was 25 years old. It was 2011; I was a newlywed and recent college grad with big dreams. What started as excruciating pain in my feet became much scarier when I could no longer see my face in the mirror. Although it’s still not well understood, I’d had an autoimmune attack. Many of my nerves had been damaged, including my optic nerves. Fortunately, after the hemorrhaging subsided, I was left with some functional vision, but I’m legally blind and in constant pain.

My first 25 years were as bright, as I had been, in terms of both grades and spirit. I was a happy person who studied abroad in Germany while getting my Bachelor’s degree in philosophy. My plans were to either go on to graduate school to teach or attend law school. Those plans—everything, really—changed when I was plunged into a disorienting, blurry world of alternating darkness and unbearable light.

My body and mind couldn’t make sense of the sheer amount and variety of pain sensations that never stopped. When I did sleep, it was during the day to avoid the harshest light. I didn’t have much of a schedule, sleeping or otherwise, for the years it took to get my pain under control. I could no longer drive, work, walk well unaided, even prepare a meal or have any semblance of a social life.

In Search Of Answers

My family and I were doing all we could to find the cause for my body’s deterioration, regularly seeing new specialists and trying increasingly dangerous treatments. Our lives were focused totally on this. My young marriage couldn’t handle the stress of this sudden and debilitating illness that made me very dependent, depressed, and… different. We all wanted “the old Megan” back.

I was no longer the bubbly, vivacious, smart young woman I had been, I was desperate and exhausted. I had become a tragic version of myself. In moments of lucidity, I recognized how bad things had gotten but had no idea how to address them.

When my husband and I separated, I felt even more physically and emotionally isolated, living on my family’s farm in rural southern Illinois. As difficult as that time was, I am so grateful for it because I had a lot of internal work to do. I had to learn how to live in this body that seems to hate me, how to appreciate what I have and define what I wanted. My primary goal was to become a contributory, functional part of society again. The only way to do that was to reframe how I saw myself and my situation. I’d been missing “the old Megan” so much, I hadn’t thought I’d appreciate my current self.

The Awakening

In my “Before,” I took everyday beauty for granted like most everyone else. That is until I lost most of my sight and identity. Sight loss caused me to see the world differently, both literally and metaphorically. I used the camera on my phone to take photos of things I wanted to see or read. Then I zoomed in to see the details I couldn’t identify without help. This was my first taste of assistive and adaptive technology which opened up a whole new world for me.

Organically I started to take more and more photos, which gave me a positive way to view my disability. I see the world differently than others and that can be positive as I can use my new perspective to become a better photographer. I’d taken photography classes in college but truly fell in love with it after becoming legally blind. I feel so much joy in rediscovering the visual world and sharing the experience with others.

After spending years going to doctors like it was my job, we were left with more questions than answers. It’s been almost 9 years since the autoimmune attack. I haven’t given up on finding the name of my disease, but I no longer see that as the key to my ability to live a good life I had to move on, somehow.

I attended a school for the blind in Chicago for a year, where I learned essential skills like using my cane properly, reading Braille and performing regular daily activities without sight. (Thank you, Illinois Center for Rehabilitation and Education/ ICRE-Wood!) From there, I was hired to work at the Base Supply Center at the Great Lakes Naval Center for the nonprofit AbilityOne agency, Beyond Vision.

Moving Onward

My husband and I decided to give our marriage another shot, so he moved with me to the northeastern Chicago suburbs. That was in the summer of 2017 and we are still here, I am still working at the Base Supply Center and I continue to explore the world around me with my camera.

I want to show people, through my art and life, that our limitations can become our strengths and there’s great beauty in disability. Disability is often thought of as simply a lack of ability, but it’s truly having different abilities and perspectives with value. Blindness and other disabilities are so badly understood, yet nearly one in five Americans is living with a disability. Widespread misconceptions are a problem that I hope to help, as no one expects a legally blind person to be a photographer (especially if they don’t realize that most blind people have some vision.) I hope to spread awareness and advocate for people with disabilities we have value and unique talents to offer if given the opportunity.

When I lost my sight, I didn’t think I’d be gaining anything, but I was wrong. The “old Megan” had more depth of field and visual acuity, but the new me has more depth of character and emotion, plus more vision than she could’ve imagined.

Connecting With Megan:

Image Descriptions:

  • Featured photo
    • A black & white image of a long stretch of railroad track taken from the caboose.
  • First Gallery (before Megan’s autoimmune attack):
    • A color wedding day photo of Megan standing with her arms around her smiling Mom and #1 supporter. Both ladies look lovely with Megan wearing a strapless white wedding dress and her mom in a sleeveless black dress.
    • Black & white wedding photo of Megan, her husband, and two adorable young nephews. The boys are being held by Megan and her husband.
    • Photo from Megan’s vision test at the beginning of her illness.
  • Second Gallery 3 Black & White Photos:
    • A bare reflection of a tree in a puddle of rainwater on asphalt. 
    • Closeup of the center of a flower.
    • Another closeup of a leaf with water droplets on it.
  • Third Gallery 7 Color Photos:
    • A partial closeup image of a bright yellow sunflower with a brown center.
    • Downward perspective closeup of the pink and white petals and filaments of type of lily.
    • The veins of a brownish leaf with water droplets.
    • Closeup of white tufts of a dandelion.
    • Reddish/brown veins on a green leaf.
    • Yellowish/brown withering leaf and the bright glow of the sun can be seen in the distance.
    • Another pale pink flower belonging to the lily family whose filaments are the focus of the photo.
  • Fourth Gallery 3 Color Photos of Megan today:
    • In the first and third photos, Megan is posing with her mom sporting a stylish cropped haircut.
    • The second photo is Megan, her husband, and adolescent nephews. The four of them are standing close together decked out in winter gear.

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Sports: A Vehicle to Disability Advocacy

Introduction

Last week I introduced you to Blind Beauty Eliana Mason. Today, in her Women On the Move article, you’ll learn more about how she became a fierce sports competitor. A Disability Advocate in the making, I can see Eliana changing perceptions about visual impairment through her love of sports.

It’s not easy living “in-between” (not fully sighted, not fully blind). Like a vast number of conditions, visual impairment/blindness is a spectrum. None of us “see” the same, even those who have the exact same condition. We all “see” differently and whatever residual sight we possess impacts day to day living.

Visual Impairment & The Public

Peru 2019 Calahan & Eliana
Peru 2019 Calahan & Eliana

When I was born the doctors thought I was completely blind. I have underdeveloped eyes along with congenital glaucoma and cataracts. At just 9 days old I underwent surgery to remove my lenses. However, because my eyes were not fully developed the doctors were unable to complete the procedure, and my lenses were not replaced. This resulted in me having very limited vision in my right eye and only light perception in the left.

People always ask me “what can you see?” I find this difficult to answer because I was born with my eyes this way. All I can see is all I have ever known, therefore it makes comparison almost impossible. One big frustration I have is that most people don’t realize what it means to be visually impaired. Our brain wants to quickly categorize things and so others typically either think you are sighted or blind.

Visual impairment is a concept that confuses a lot of people and I have been accused of “faking” my disability. Who would even want to do that?

I get anxious using my cane because people have said to me “you are looking at your phone, why are you using that cane?” What they don’t understand is my font is HUGE, I have my screen zoomed and I am holding my phone right in front of my face. I want there to be more education on what it means to be visually impaired, and that no two individuals’ eye conditions are the same.

I want to feel confident and empowered using my cane, a tool meant to help me. However, often I am nervous due to the stigma and reactions by other individuals. It is my goal to be a disability advocate and change the way disabilities and especially blindness is viewed.

Natural Born Competitor

Team USA Red Carpet 2016
Team USA Red Carpet 2016

I grew up as the middle child between two brothers. Thus, it was my mission in life to keep up with them in every way possible. They are to blame for my competitive, stubborn, determined, and assertive nature. You really have to be tough growing up with only brothers. I would get frustrated when I couldn’t keep up with them athletically due to my vision.

Growing up I led a very active lifestyle; I loved hiking, camping, skiing, and of course playing sports. I tried a variety of sports, including cheerleading, track, gymnastics, and soccer. While I loved them all my vision became a barrier to my overall success.

At 15 I was so excited to discover goalball, a sport I could excel in without having to compensate for my vision loss. It was the first time in my life that I felt like I could be an athlete first. I was able to focus solely on the sport, without making adaptations or accommodations for my visual impairment.

You may be wondering what goalball is? It is a Paralympic sport geared specifically for blind and visually impaired athletes. It was developed in WWII for blinded vets and is now played internationally around the world in over 200 countries. I highly suggest looking it up. I joke that it is a sport for blind individuals, however, the easiest way to understand it, is to watch a game. Goalball is unlike any sport you have ever heard of and has changed my life.

Taking Love Of Sports To A Higher Level

Lima 2019 Throwing Photo is described in the body of the post.
Lima 2019 Throwing Photo

Through sports, I have really developed a stronger sense of self. Competing with other athletes who share my visual limitations helps me see them as role models, not only in sports but in life. I felt like I was part of a community bigger than myself and it really improved my overall confidence and identity.

Sports have shaped me into the person I am today. Through playing a competitive team sport, I appreciate the hard work, dedication, failure, loss, success, perseverance, and extreme joy that comes with the game. These are skills I can take off the court and implement throughout the course of my life. I would be lost without the opportunity to compete in sports and am so thankful I found goalball.

At first, I enjoyed goalball because it was something new, accessible, and sports-related. However, something changed for me after competing for a year and I realized I wanted to try and make the Paralympic team. I knew this would take a lot of drive, determination, and sacrifice which I was ready to give. I made the 2016 Rio Paralympic team and helped Team USA win a bronze medal in the sport of goalball. While this was amazing I am hungry for more and am training fulltime to compete in the Tokyo 2020 Paralympics with the overall goal of winning a gold medal. Training involves strength and conditioning, on the court practice, and nutrition.

Rio 2016 medal photo
Rio 2016 medal photo

Athlete Becomes World Traveler

Goalball has expanded my world, opportunities, experiences, confidence, and ability to navigate the world as a blind individual. I first started the game at 15 and am now 24. During this period of time I have been to:

Additionally, I’ve met other Olympic and Paralympic athletes, and had the privilege and opportunity to represent the USA on a world stage in the sport I love. I am currently living in Fort Wayne Indiana to train fulltime for goalball. We have our resident training center out here where we conduct on and off the court training five days a week. Having the opportunity to train with my team daily has exponentially increased our team’s skill and ability. I am so thankful to the City of Fort Wayne and Turnstone Center for Adults and Children with Disabilities for providing us with this experience.

It has been worth it to make the move in my life, however, it was honestly really scary to do so. Moving across the country away from my friends and family to an unfamiliar location was a very hard decision. I have grown a lot from this experience in my independence and have learned a lot about myself.

My boyfriend competes on the USA Men’s Goalball team. We are blessed that we get the opportunity to travel the world together and cheer one another on. Dating someone who shares my disability has taught me to be creative in how I do a lot of things. However, it has been really empowering to navigate the world together and teach others that we can accomplish anything we put our minds to.

Furthermore, I am a graduate student at Antioch University, aiming to achieve a Master’s in clinical mental health counseling. It is a passion of mine to work with children and families and I would ultimately love to specialize in disability counseling. I want to ensure that all families understand disabilities and know how to foster growth and independence in their children. A quote I really like (not sure where it comes from, I saw it written somewhere online) is “disability does not mean inability” this is how I live my life, and this is the message I am hoping to impart on the rest of society.

Lima 2019 medal photo
Lima 2019 medal photo

Image Descriptions:

  • Featured image – an action shot of Eliana playing goalball at the Para Pan American Games in Lima 2019. In this photo, she is on the ground blocking a goal shot from the opposing team.
  • Peru 2019 Calahan & Eliana – Lovely capture of Eliana’s boyfriend, Calahan (his right arm wrapped around Eliana), while standing in the arena in Lima 2019. Both are grinning as they are about to bite into their silver medals.
  • Team USA red carpet banquet in DC after the 2016 Rio games. Eliana is standing on the carpet wearing a red dress and gold sandals. Eliana has honey blonde hair just below her shoulders. She is wearing a bronze medal around her neck and behind her is a dark gray backdrop with the Team USA logo and logos of company sponsors.  
  • Another action shot of Eliana from the Para Pan American Games in Lima 2019.
  • A team photo on the medal stand from Rio 2016.
  • Another team photo on the medal stand from Peru 2019.