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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 12 Featuring Stephanie Stephens Van

Optimism is the faith that leads to achievement. Nothing can be done without hope and confidence. ~Helen Keller

Stephanie Stephens Van, MA, CLVT
Stephanie Stephens Van, MA, CLVT

“Try another way” are the words that resonated most with me upon meeting Stephanie Stephens Van. An author, lecturer, consultant, instructor and Vision Rehabilitation Therapist (VRT), Stephanie, is one of those people with whom you are immediately at ease.

I met Stephanie a few weeks ago when she came to my apartment to assess me to determine my needs as it relates to performing personal/household tasks with vision loss. This was definitely one of those times when I wondered why it took me so long to seek some professional guidance. My first session with Stephanie was so enjoyable partly because of her sparkling personality, her passionate advocacy for those with blindness/vision loss and her wealth of knowledge on vision loss solutions.

In my teen years I fought becoming a professional in the field of blindness. I wanted to ‘break out’ of what I perceived as a stereotype. ~Stephanie Stephens Van

Even though Stephanie balked at the idea of working in the field of blindness her life’s path led her to this destination. She received her undergraduate degree in Social Work from Edinboro University and went on to obtain her graduate degree from Western Michigan University. It was upon entering graduate school that she gave up on her initial opposition and received her Master’s degree in Rehabilitation Teaching for the Blind (now known as Vision Rehabilitation Therapist in Vision Studies). Western Michigan University by the way was the first university in the country to offer such a degree.

Over the past 32 years, Stephanie has worked in direct service to those with vision loss, non-profit and state funded agencies. She has also lectured nationally other blindness professionals, community organizations and graduate students on a variety of issues on vision loss.

If I were a betting person I would bet that one of the reasons Stephanie has taken the path set before her has been a direct result of her upbringing. Some parents of children with disabilities sometimes unknowingly coddle the child thinking they need more protection. Stephanie’s parents allowed her to explore, fall down and pick herself up. In her own words she says “It wasn’t always fun, but I am grateful to them when I look back.

In addition to her work and being a passionate advocate, Stephanie also loves creativity and art as one of her vocational dreams early on was to become a full-time artist. She’s published articles and 3 versions of her book, Craft Adaptations for Adults with Vision Impairments (copyright 1998, 2008, rev. 2013).

I wish to share this creative streak with those who are blinded and believe they cannot be creative. I believe in my heart that creativity calms the senses while enhancing the mind and productivity. ~Stephanie Stephens Van

Stephanie has also written several articles posted on VisionAware including:

Stephanie, thank you for being my encourager and giving me excellent advice and tools to do those things that gave me headaches. I relish the thought of freeing up some extra brain space. You are a remarkable woman and I’m so blessed to have you in my life.

“Try another way” is one of Stephanie’s personal mottos that she lives and teaches.

“I have never had to face anything that could overwhelm the native optimism and stubborn perseverance I was blessed with.” ~Sonia Sotomayor

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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 10 Featuring Suzanne Gibson

River’s Edge

Photo of Suzanne Gibson
Suzanne Gibson

Friday’s have always been my favorite day. When I was in the corporate world it was a welcome prelude to the respite of the weekend to come. Today, I become re-energized by featuring strong, independent, influential women who happen to share a common thread of blindness or low vision.

In preparing to write these pieces I always ask the person I’m writing about for permission and request that they send me a couple of paragraphs to work from. For those with websites and social media users I can glean interesting, informative, and inspirational data that makes for a good narrative.

My advice to every young person who crosses my path, everyone actually, is to keep pursuing what it is that you love. If you are creative, create. Do not be too busy; do not tell me about your limited budget. Find a way to do something. I did not always follow this advice. I became distracted many times with life.

Suzanne Gibson, a very talented local artist who owns River’s Edge studio in New Brighton, PA, is no exception to the unbelievable fortitude of people I hold in the highest regard. Prior to contacting her, I saw some articles written about her in a few of our local newspapers.

Suzanne Gibson Painting His Majesty (a very colorful majestic bird)
Suzanne Gibson
“His Majesty”

I knew Suzanne experienced vision loss and yet she was still passionate about her art. What I didn’t know were the other extraordinary circumstances she went through that were unrelated to her loss of vision.

The tumor was growing again, and I would need radiation. The daily radiation treatments lasted 6 weeks, but recovering took much longer. To add to this challenge, the week after I finished radiation, I received the news that my visual acuity was 20/200 and that I could no longer drive.

I think for most of us, to receive a simultaneous diagnosis of vision loss and a brain tumor, would be devastatingly frightening. Just when Suzanne was beginning life anew as a painter she had to endure this inconceivable news.

After her first brain surgery, Suzanne’s inspiration to keep moving forward was found in the works of blind artist John Bramblitt. She began painting canvasses and contemplating her second chance at life. While Suzanne was considering the direction her life would take next, life dealt her another blow.

The brain tumor was back. After another brain surgery and a 6 week course of daily radiation therapy, the recovery period this time around was considerably longer than the first time. With the added complication of worsening vision, Suzanne was introduced to adaptive devices to aid her in continuing to paint and live independently.

…without Lex Luther, there is no Superman and without this ‘disability’, I would not be painting the way that I do. This vision loss that could have struck me down has, instead, led me to explore myself and dig deep into my soul to paint expression and feeling.

During the experimental painting phase, while using the adaptive devices, there were some initial disappointments but then Suzanne created a piece aptly named Enjoy the Moment.” When I look at this painting I’m reminded of an indescribably beautiful summer day. The explosion of reds, yellows, oranges, greens, blues and purples along with the curves and angles of the two flowers tickle the senses. I can even imagine feeling the warmth of the day while hearing the birds sing as I inhale the sweet scent of the flowers. It’s a beautiful moment. The success Suzanne gained by this painting gave her the confidence she needed to continue her craft.

Suzanne Gibson Enjoy the Moment
Suzanne Gibson
“Enjoy the Moment”

Suzanne sent me 3 of her paintings which I’ve included in today’s post. I like and appreciate all 3 for different reasons but ‘My Nemesis was the one that really spoke to me. As soon as I saw it, without knowing what the cause of Suzanne’s loss of vision, I thought “this reminds me of my central vision loss.” So when I looked at an essay she wrote with the same name as the painting it clicked.

Suzanne Gibson Painting "my nemesis"
Suzanne Gibson
“My Nemesis”

Suzanne was diagnosed with Stargardt Disease an inherited vision disorder with macular degeneration that typically affects younger people. The macula, located in the center of the retina is responsible for detailed central vision needed to read, drive, recognize faces, etc.

Suzanne, you are an amazing example of what a person can achieve even when faced with adversity. Your strength, determination, and courage are admirable and you are a remarkable role model.

I’d like to encourage you to visit Suzanne’s website at www.riversedgestudio.com to see some of the offerings. In ending today’s post, because I like Suzanne’s philosophy on life, I’m using one of her quotes.

“My advice remains the same: enjoy the moment- do not wait for tomorrow. You do not know what that day will bring. However, when you do reach tomorrow and it is not what you thought it would be, REVISE!” ~Suzanne Gibson