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WOTM 13 Featuring Stephanae McCoy

You don’t know what you can’t see when you can’t see it…

Steph McCoy
Steph McCoy

The first time I put on eyeglasses was a little over 44 years ago. The feeling of seeing clearly for the first time stole my breath away. The transition was like leaving a dark movie theatre and stepping outdoors on a bright sunny day. It took time for my eyes to adjust because suddenly everything was so clear and focused as if all my senses were reborn; sound was keener, flavors more savory, smells more aromatic, touch more sensitive and sight — well, sight was indescribable. Depth perception was strange, crossing streets and walking down stairs was a little precarious as I acclimated to what is considered 20/20 vision.

For 37 years I was blessed with perfect vision provided I wore corrective lenses. That all changed 9 years ago with two words, “macular hole.” It began when I removed one of my contact lenses, looked in the mirror, and to my horror, half of my face was missing.

The diagnosis, while grim, in my situation all the statistics pointed to a favorable prognosis; One, I was considered very young to experience a macular hole, two, odds were it would not occur in my other eye and three; I had a 95% to 99% probability of having my vision completely restored in my affected eye.

What a relief to know that this unfortunate incident was only a minor inconvenience. When my retina specialist explained to me that he would perform a vitrectomy I jumped at the opportunity.

Vitrectomy is an outpatient surgery done under local anesthesia where the surgeon inserts these tiny instruments into the eye, suctions out the eye fluid, repairs the damage at the back of the eye, then inserts a gas bubble. It was kind of eerie being able to discern light and see the shadows of the instruments moving within my eye while at the same time talking with the surgical team. Afterwards I had to keep my head in a constant downward position for 3 weeks to enable the gas bubble to seal the hole in my macula. This first vitrectomy was not successful and a second surgery was repeated 5 months later.

Fast forward 4 more years with trips to my retina specialist, regular ophthalmologist, low vision specialist and Cleveland Clinic I had a total of 6 procedures/diagnosis:

  1. Detached retina with laser surgery repair in the left eye.
  2. Epiretinal membrane that developed into a small macular hole in my right eye, experimental gas bubble injection during the office visit (I never imagined that I would have a needle literally stuck in my eye while completely conscious – mental note I will not EVER do this again).
  3. Vitrectomy in my right eye to repair the reopened macular hole.
  4. Cataracts
  5. Glaucoma
  6. Ruptured blood vessel which occurred after the last vitrectomy required an injection of medication to stop the bleeding.

Though exhausted from all the procedures and diagnoses when my brother suggested returning to Cleveland Clinic one last time I agreed.

The news was devastating. “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 and violently shoved me into the dark abyss of despair. I am now legally blind.

After all I’d been through, I was numb, like an out-of-body experience, I could hear the echo of my heartbeat and I had a difficult time focusing on the doctor’s next words. After what seemed like an eternity, he continued, “Ms. McCoy, you have lived with this condition (high myopia also known as severe nearsightedness) all your life and you have done everything you should do by regularly visiting the eye doctor but you have reached the point where your vision can no longer be corrected.”

By the way, high myopia is a severe form of myopia where my eyeball stretched and became too long. This can lead to holes or tears in the retina and can also cause retinal detachment. Abnormal blood vessels may also grow under the retina and cause changes in vision.

Today, after the removal of the cataracts the left eye is now the good eye with vision measuring 20/600. The vision in the right eye is “finger counting” a measurement used when standard methods no longer work. Out of curiosity I asked my eye doctor what follows after finger counting and was told “hand waving” and “light perception.” Even with these different means of measuring vision because of the vast spectrum of vision loss what one person sees with a specific condition, may not necessarily be the same for another person with the same diagnosis.

Losing my vision feels like being enveloped in a thick, never-ending fog. I sometimes dream that I can see only to awaken with the knowledge that it was only a dream. Throughout the past 9 years, as my eyesight has deteriorated to legal blindness, I’ve learned so much about visual impairments, coping strategies, and advocacy.

Through this experience I have met and worked with the most exceptional people and organizations. Some of which include the Checkered Eye Project, Foundation Fighting Blindness, American Council of the Blind, Pennsylvania Council of the Blind, Golden Triangle Council of the Blind, Blind and Vision Rehabilitation Services of Pittsburgh and VisionAware. I am so honored to be able to serve on the various committees that are part of some of these organizations.

Have a great weekend!!

“Although the world is full of suffering, it is full also of the overcoming of it.” ~Helen Keller

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WOTM 11 Featuring Fatmatta Wurie

Fatmatta Wurie of Maono Ya Chini featured image description is in the body of the post.

WOTM Featuring Fatmatta Wurie

“I want to change the face of Information Technology for the Blind and Visually Impaired community. And once I do that, it is nothing to change the views and ideas of society.” ~Fatmatta Wurie

Maono Ya Chini

Maono Ya Chini is a blog created by Fatmatta Wurie, a young woman, who was one of the first bloggers I interacted with when I began blogging. Sharing a mutual understanding of sight loss, brought Fatmatta and me together. A college student majoring in Information Technology (IT), when she received her diagnosis she was embarking on young adulthood. 

When I first saw the words Maono Ya Chini, which means low vision in Swahili, I really liked their exotic sound. At the same time, I admired Fatmatta’s personal story and her approach to handling sight loss. “Seeing life through different eyes,” the tagline of Maono Ya Chini, seems to be the path Fatmatta has chosen to pursue her dreams.

Like many others who lose sight, Fatmatta went from grief to acceptance and finally the desire to help others. Her diagnosis of hereditary macular dystrophy caused her to make significant adjustments in her life.

Diseases of the eye affecting the macula, impact central vision which interferes with a person’s ability to perform daily activities. Activities like identifying faces, grocery shopping, reading newspapers, menus, ATMs, currency, and watching TV, are just a few. Safety concerns like falling risks, disorientation, medication-related errors, crossing the street, cooking, and bathing are real issues. Issues seldom considered until one has to face the prospect of living with vision loss. Add to it coping with the emotional impact of losing sight and independence it is a truly life-altering experience.

After researching her diagnosis and following up with a retina specialist Fatmatta found that she had Stargardt disease. Imagine receiving this type of news as a 19-years-old, at the beginning of your professional career.

“Being an Information Technology student, I am immediately drawn to being innovative, inventive, imaginative and creative.” ~Fatmatta Wurie

It’s impressive that is it’s only been three years since her diagnosis and Fatmatta yet is an advocate. She’s volunteering and connected with other people experiencing vision loss to build a community of like-minded go-getters.

On her blog, Fatmatta shares lots of low vision and disability awareness resource information. She also documents personal thoughts from her journaling and re-blogs articles of interest. Due to the demanding nature of being a full-time college student and blogging she manages her time well.

Fatmatta you are an inspiration and I am hopeful that you will indeed change the world!! Your youthful zeal and enthusiasm are contagious. Keep up the good work my friend.

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WOTM 7 Featuring Karen Rowie

“Friendship is unnecessary, like philosophy, like art… It has no survival value; rather it is one of those things that give value to survival.” ~C. S. Lewis

Today I felt moved to talk about a friend of mine who probably doesn’t even know how she’s affected my life. When I think of the paradox of how fearful I was of blindness, then enduring my vision loss, I sometimes wonder if becoming friends with a blind girl somehow prepared me for what was yet to come.

My very first personal foray into the world of blindness was when I introduced myself to Karen Rowie. Karen was a couple of years younger than I and I remember when the neighborhood kids would be playing outside Karen would sit alone on her porch.

I would love to be able to say that it was on my initiative that I met Karen when in fact my mother instructed me to do so. My mother and I always had somewhat of a strained relationship but this one simple act of kindness, she demanded I do, would change my life in such a way that even today I still feel the impact.

It was with trepidation that I approached the steps to Karen’s porch and I was seething with anger that my mother was making me do something that felt so uncomfortable. Fear of saying or doing the wrong thing enveloped me like a cloak because the only prior exposure I had to blindness was what I learned in school about Helen Keller.

“When we honestly ask ourselves which person in our lives means the most to us, we often find that it is those who, instead of giving advice, solutions, or cures, have chosen rather to share our pain and touch our wounds with a warm and tender hand.” Henri Nouwen

One of the things I didn’t understand about Karen, and until recently didn’t know there was even a word for it, was that she exhibited blindisms. Blindisms are behaviors sometimes found in blind children such as body rocking, head swaying and eye rubbing. I don’t know why Karen moved like she did and after I got to know her it really didn’t matter.

After I got over my initial awkwardness of meeting Karen, I enjoyed hanging out with her. We would go to the movies (I would narrate), take the bus into the city (Pittsburgh) and go to what is now called the Western Pennsylvania School for Blind Children.

Karen’s parents were very protective of her and because of this she was not allowed to leave the porch. So I would sit with her while she would read to me one of her Braille books or I would do likewise with a printed version. At times some of the other neighborhood kids would come by as well and Karen would get so excited to have attention lavished upon her.

“One of the most beautiful qualities of true friendship is to understand and to be understood.” Lucius Annaeus Seneca

Karen was such a sweet person and I may not have known it then but I realize that having her come into my life was a defining moment. What I learned from my friendship with her was that she was like any other kid who wanted to laugh, play, go to the movies and be accepted by her peers. I also learned that Karen’s blindness was only one of many characteristics which added to her uniqueness.

It’s been many years since I’ve last seen Karen and wherever you are I just want to thank you for being my friend. If by chance you see this post please contact me by email at boldblindbeauty@gmail.com.

Thank you

Steph

“Walking with a friend in the dark is better than walking alone in the light.” ~Helen Keller

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WOTM 6 Featuring Libby Thaw

WOTM Featuring Libby Thaw

Libby The Visionary

Collage of Libby Thaw (one picture of Libby performing at the microphone and two headshots of her)
Libby Thaw

In December, 2009 it had been 6 months since I was declared legally blind and it felt as if everything in my life was spiraling out of control. Since my vision loss is a hidden disability this was one of the most challenging aspects of the ordeal. It was right around this time that I met Libby Thaw who offered me a lifeline.

The feeling of isolation one can experience when they lose their vision can leave you with a paralyzing fear that you can never make it out of the dark abyss. Because I knew I wasn’t emotionally ready to use the white cane Libby’s Checkered Eye Project (CEP), an international low vision awareness effort, was the perfect solution for me.

“Everybody, including people with disabilities, makes assumptions. Problems arise when we are not open to learning our assumption was wrong.” ~Libby

Libby Thaw, a wife and stay at home mother who resides in Port Elgin, Ontario Canada founded the CEP in 2000. I remember during one of our many conversations Libby told me the CEP idea evolved out of a chat with a couple of like-minded individuals. The concept was simple and revolved around a discreet hands-free option for people with low vision to self-identify to let others know of their disability.

Libby, who also happens to be legally blind, understands the difficulties one encounters with loss of vision. On one hand, people with low-vision can be challenged with day-to-day tasks yet on the other hand, to the general public, their disability is not apparent. It’s because of this hidden disability that Libby designed an emblem representative of, and for those impacted with, significant vision loss.

The CE is a pin, patch, or button, which may be worn to subtly indicate its wearer has partial blindness, also known as low vision. In addition, the CE creates a unique opportunity for open dialogue to build awareness on low vision and what the symbol represents.

Personally, I can attest to the sense of empowerment I gained when using the CE. Since I had no control over the loss of my vision at least I could control who I chose to make aware of my situation. And even though I do need to use the white cane now I still wear my pin to increase its visibility.

Libby who has Stargardt disease, the most common form of inherited juvenile macular degeneration, is a motivational speaker, writer, and entertainer (you really should hear her sing). I had the chance to host Libby as my guest when she came to Pittsburgh to attend the Foundation Fighting Blindness’ Pittsburgh VisionWalk back in 2011.

Music gives me a great feeling of oneness. I like to take in the sense that we are all in it together; the musicians are obviously in on the cooperation, but the crowd has lots to do with it too. I’m so glad my eyesight doesn’t hinder that. In fact it probably augments it. Since I can’t see people’s facial expressions I project my own ideas of what their movements and body language are saying. ~Libby

Upon meeting her at the airport I was immediately struck by Libby’s energy and enthusiasm. The weekend was a flurry of activities that included a stop at Pittsburgh Blind and Vision Rehabilitation Services for a tour of the low vision facility and an opportunity for Libby to talk about the CEP.

To each eating establishment we went during Libby’s 2-day stay she would ask the host/hostess if they had large print menus and this opened the door for further discussion about the CEP. It was refreshing to see someone actively self-advocating while at the same time bringing attention to an issue impacting many people across the U.S. and worldwide.

In October of 2013, Libby was invited by the California Council of the Blind (CCB) in San Diego, California to attend their annual state convention. Not one to pass up an opportunity to spread the word on the CEP Libby packed her bags and traveled to the CCB’s convention. She wrote a very insightful blog on the trip which you can peruse at your leisure by clicking HERE.

I would be remiss if I didn’t mention that the CE is not a mobility or safety device, rather it is a tool for face-to-face interaction only and its use is a matter of personal choice which gives the wearer the option of determining with whom to share their vision loss. If you or someone you know would be interested in learning more about the CEP Libby can be contacted directly by email at info@checkeredeye.com or you can visit her website at www.checkeredeye.com.

If you have any questions or would like additional information from me please leave a comment below or email me at smccoy@boldblindbeauty.com.

I think the following quote accurately sums up today’s bold blind beauty. Libby, I want to thank you for being you and in so doing being a positive role model and a ray of hope for people impacted by vision loss.

“We should be taught not to wait for inspiration to start a thing. Action always generates inspiration. Inspiration seldom generates action.” ~Frank Tibolt