“Shame was the reason I decided to describe myself as ‘blind’ versus ‘visually impaired’ because it was important for me to accept the word ‘blind’. Once I did this I was able to get a grip on my fear and move forward.”
I’m not sure why I felt shame when I lost my eyesight but I think it was closely tied to my personal biases and lack of understanding where blindness was concerned. In walking through the process of sight loss and facing my shame/fear head-on I was able to move forward.
Do you Face Everything And Run? Or Face Everything And Rise? Fear can motivate or repress and your response is a matter of choice.
Choosing To Rise:
The first step is doing an honest self-assessment. Like following a map, unless you know yourself, you will get lost.
The next step is to set short and long-term goals.Goals should always be written, periodically reviewed, revised and once they are met, new ones should be set.
The third and final step is to stay the course.When you get derailed, get back on track and keep pursuing your dreams. Do not let anyone, tell you that you cannot succeed.
When it gets down to it the choice is up to you. You decide how to navigate your path to success.
Image: Abigail (Abby) is in the background of the text with her white cane and handbag.
“As a person with albinism, my skin, hair, and eyes lack pigment, resulting in a fair porcelain complexion, light blonde-white hair, and light blue/grey eyes. Albinism is typically accompanied by low vision, but there is a wide spectrum for people with albinism in terms of eyesight and photophobia (sensitivity to light).” ~Nicole Schultz-Kass
Beauty Is An Alabaster Princess
When I was asked if I would write about my experiences for Bold, Blind, Beauty, I have to admit, some of the insecurities of my youth emerged. “Do I even fit with the other women who have shared their experiences?”, I thought, “Am I really a bold, blind, beautiful woman?”
The answer is, “Yes!” But, that answer doesn’t always come easily when decades of insecurity preceded finding my strength and confidence.
When I was a child, all I wanted was to be like everyone else. I would have given anything just to fit in.
I was born with a condition called Oculocutaneous Albinism, which is also the primary cause of my blindness. As a result, my experience with blindness is closely intertwined with my experience of beauty and physical appearance. I believe it is not coincidental that as I accepted my blindness, I also began to find a true appreciation for my own unique beauty.
As a person with albinism, my skin, hair, and eyes lack pigment, resulting in a fair porcelain complexion, light blonde-white hair, and light blue/grey eyes. Albinism is typically accompanied by low vision, but there is a wide spectrum for people with albinism in terms of eyesight and photophobia (sensitivity to light). My eyesight has always hovered between a measured acuity of 20/200 and 20/400 with strong photophobia. As I have aged, my photophobia and functional vision have worsened.
From Angst To Beauty
When I was young, standing out and being seen as someone so visibly different in appearance left me self-conscious. I felt shy and far less confident in myself than I would like to admit. Throughout my childhood, and into adulthood, I didn’t recognize “beauty” in myself. At least not the aesthetic “beauty” typically referred to with that word. My grandmother would say I was beautiful (I mean, she’s a bit biased). I’ve always had a beautiful heart and deep caring for others and could recognize this “inner beauty.” But, if I stood next to any other female my age, I couldn’t see physical beauty in myself. I felt so different from everyone around me.
It wasn’t until my late twenties or early thirties that I came to recognize, accept, and truly appreciate, that the features I have because of albinism: my porcelain skin, my white hair, and the unique blue-grey of my eyes, these features are rare, they are beautiful, and they are MINE.
This past summer, at the age of 36, my husband and I attended his university alumni reunion, and a friend of ours referred to me as an “Alabaster Princess.” At that moment, he managed to bring together decades of personal struggle with “beauty” in a pivotal, beautiful moment. It was one of those “aha” moments Oprah talked about throughout her career. Aha, my friends, I AM an Alabaster Princess, and I AM BEAUTIFUL!
For many years, due to a combination of lack of services offered by my school district, and my self-defeatist avoidance of anything “different”, I refused to travel with a cane. I completed schoolwork and activities with top grades but endured neck, back strain and massive headaches from eye strain. It wasn’t until I was a young adult that I came to understand and accept my blindness as part of me. I believe being blind has been as important in my development as my values, hopes, and talents, but that blindness is still JUST one part of who I am.
Around age twenty, I attended adjustment to blindness training, which may seem silly to an observer when you consider I had been blind since birth. This training allowed me to meet others blind people and helped me move toward self-acceptance. It also provided me with the tools I needed to be independent, competent, safe, and confident. I began traveling with a long, white cane, learned the basics of Braille, and learned how to go through life as a bold, blind, beautiful woman with confidence. I became a guide dog handler a decade later and experienced yet another level of confidence, poise, and grace as I traveled with a canine partner.
My blindness is one piece of the puzzle that is “me”. (If you ask my husband, that’s probably one massive, complex, 3D puzzle!) I am a daughter, wife, mother, sister, friend, advocate, counselor, speaker, writer, blogger, and crafter. I love life–enjoy this world full of color, reading, movies, travel, organizing, meeting new people, inspiring others to live their best life and lifelong learning. There are many things I’m good at, and there are things I am working to improve–just like anyone else.
Coming Full Circle
When I was a child, all I wanted to do was fit in. But as I consider the course of my life, I wanted to fit in when I was born to stand out. I wanted to be invisible in this world where, for some reason, my greater purpose involves being seen.
Today, I am a bold, blind, beautiful woman because I utilize the tools of blindness. Today, I am a bold, blind, beautiful woman. I know who I am, what I have to offer the world, and that I may be blind, but blindness will not stop me from living life fully, learning, growing, and giving, one day at a time.
WOTM 33 Featured Image Description:
Photo credit for all images in this post goes to Colleen McKinzie Photography. Nicole, her husband, two daughters, and a female yellow lab, Picassa, are posing outdoors on a sunny autumn day. They are sitting on a wooden deck surrounded by autumn colored foliage.
Nicole and her two daughters are standing together outside on grass under a golden/orange oak tree. Her right arm is wrapped around her oldest daughter while the youngest is sitting atop her shoulders.
In this photo (similar to the featured image) the family standing.
When People Say ‘You Don’t Look Like You’re Blind’
Whenever I am out & about since I still possess a residual amount of sight, I can sense people staring. But I just keep moving onward past the expectations of others and how they ‘think’ blindness should appear.
Bold Blind Beauty
Featured Article on The Mighty
Recently I became a contributor to The Mighty an online community of people who share their stories of serious health conditions, disability, disease, and mental illness. The article below is my latest entry on what caused my sight loss and life after the “there’s no more we can do for you” conversation.
It was a little over 48 years ago when I put on my first pair of eyeglasses, and the feeling of seeing clearly for the first time was indescribable. The transition was like leaving a dark movie theater and stepping outdoors on a bright sunny day. My eyes needed time to adjust to everything suddenly appearing clear and focused.
For 36 years, I enjoyed perfect vision provided I wore corrective lenses. That all changed 11 years ago with two words: macular hole. It began when I removed one of my contact lenses, and I looked in the mirror to see half of my face missing.
While I had never heard of a macular hole before, I learned the macula provides the sharp, central vision needed for reading, driving and seeing fine detail. A macular hole is a small break in the macula, which located in the retina, is the center of the eye’s light-sensitive tissue.
Though all the statistics pointed to a favorable prognosis, it didn’t work out that way for metounfortunately. I’m reduced to counting fingers, since I can no longer see the eye chart. Developing macular holes in both eyes has destroyed my central vision.
I’ll never forget the devastating news. “Ms. McCoy,” the doctor said, “I’m so sorry to tell you there is nothing more we can do for you.” Those simple words confirmed my worst fears — I was now legally blind.
The doctor told me I lived with high myopia (extreme nearsightedness) all my life. He went on to say that even though I did all the “right things,” due to the high myopia, macular holes, surgeries and glaucoma, my vision loss was irreparable.
Appearances Can Be Deceiving
Prior to losing my sight, I used to think that when a person used a white cane, it meant they were totally blind (no light perception). I was wrong. The range of sight loss is enormous and differs greatly from one person to the next. There really is an immense gray area.
To give you an idea of my sight loss, imagine yourself in a dense fog with visibility being only a couple of inches in front of your face. Your equilibrium is off and your steps unsure. You feel claustrophobic, as the fog is so heavy. Stumble, fall, repeat. It’s unending, and you wish it would just go away. You wake with it, you go to sleep with it and in between waking and sleeping you have to come to terms with the fog.
Once you acknowledge the fog is not going to dissipate, you find a way to navigate through it by learning new techniques. With time and patience, you gradually adapt until you become adept at working within the fog.
To the outside world you “look” as if all is well and you can clearly see. And since you use a white cane to safely navigate the world, many times people will say to you, “But you don’t look like you’re blind.
Bold Blind Beauty
People don’t understand how I can dress stylishly or put on my makeup. The expectation that all blind people have to appear or behave a certain way is a huge misconception. Quite simply, the people we were prior to the loss of our vision, and the things that brought us joy, are still intrinsic to who we are today.
Handling the Stigma on Sight Loss
What I’ve found since losing my sight is there are so many stylish women who are blind or have sight loss that I felt it was time for a fashionable icon to represent them. Abigail, the white cane icon and mascot on my blog Bold Blind Beauty, is a beautiful image that evokes power, independence, chicness, confidence and success — a woman on the move stepping forward with purpose.
Once, an eye doctor told me that it would be a tragedy for me to learn how to use the white cane when, in fact, I believe the real tragedy is the shame many people feel when losing their eyesight. Having a visual image that evokes beauty, confidence and purpose is one way to change the stigma surrounding blindness.