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Uncertainty, Imperfection & Sight Loss

Uncertainty Featured Image Description is in the bodyof the post.

Uncertainty, Imperfection & Sight Loss

“I think it’s important to remember things aren’t always as they seem but rather how we want them to appear.”

Have you ever felt like you don’t know what the heck you’re doing? Confession, most of my days are filled with anxiety and quiet as it’s kept, a good portion of it is centered around my lack of eyesight.

Sometimes I feel so out of my depth and overwhelmed I can hardly breathe. It begins deep in the pit of my stomach and rises to my chest. My neck and shoulders are tense and hurting. Thoughts are racing through my head and I can’t focus. Again, for the umpteenth time, I wonder am I losing my mind?

Feeling small, unimportant, unworthy, and afraid, I continue to push through because god forbid I don’t meet my unrealistic expectations. The negative self-talk is a never-ending loop that I try to combat with positive affirmations. Sometimes this technique works but when it doesn’t I end up drained, depressed, and defeated.

Limitations, Struggles & Competency

For most of my life confidence seemed elusive to me. As a shy introvert, insecurity and fear of not being accepted ruled the day. Being so socially awkward is one of the reasons why I worked so hard to achieve perfection even though I also believe perfection’s unattainable.

At the height of my career, working in a profession I loved, I finally achieved the confidence I sought. I enjoyed working (maybe a little too much) and loved challenging myself to improve. Constantly going beyond my comfort zone was scary yet welcome and helped me grow as a professional.

Then along the way, I lost my eyesight and uncertainty began to take center stage. No longer being able to trust anything I can see wreaks havoc on my life day-to-day. To compensate for my lack of eyesight I try to cover my fear by wearing a cloak of confidence.

What’s so frustrating to me is straddling the fine line between being competent while living with a disability. I find it ironic that while I had limitations before I lost my sight, they weren’t so much of an issue. However, if I admit certain aspects of life are harder because of my disability this isn’t understood. To some degree, I feel like I have to be superhuman when I didn’t feel this way before sight loss.

Silly as it may seem, one of my hardest struggles is asking for help. “Asking for help” is my kryptonite which plays right into the whole “superhuman” thing.

Throwing Change Into The Mix

Early in my sight loss journey, I was fond of saying I was the same person I was before. This isn’t true. Oh, sure I still share some commonalities as I did before losing my sight but I am different.

For one I’m considerably older and there are new obstacles in my path. My body and mind don’t work like they used to and I have to constantly improve my problem-solving skills.

Sight loss has forced me to let some things go. Perfection has truly left the building. No longer can I be overly concerned about those things I can’t see because frankly, it’s too tiring. Yet at the same time, it’s weird because I’ll swat at what looks like a bug, bird or some other flying unidentifiable object only to find it’s a floater in my eye.

Depth perception is an issue especially when I’m riding in the front seat of a car. Since I can’t judge distance but can see moving vehicles I’m a nervous wreck. Not to mention the driver is on edge while I shriek and jump at the thought of an impending accident.

The truth is no matter how hard I try not to focus on my sight loss there is nowhere I can hide from it. It is always there and with it is the constant uncertainty of what’s going on around me.

Frequently on Bold Blind Beauty, I talk about perceptions and how we look at others. I think it’s important to remember things aren’t always as they seem but rather how we want them to appear. Just because it looks like I have it all together doesn’t mean I do. Since losing my sight most everything I do takes considerable time, effort and it’s certainly not easy.

While the tone of this post isn’t my typically upbeat tone it is real. Transparency is and always has been very important to me and this also means being vulnerable.

Have a nice weekend everyone!!

Featured Image Description:

Mirror selfie wearing a serious expression. I’m wearing white faux leather moto jacket over a black off-the-shoulder top with attached choker, thin long necklace.

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Christie Smith | Blind Beauty Issue 34

Blind Beauty Issue 34 Featured Image Description is in the body of the post.

Christie Smith | Blind Beauty Issue 34

Retinitis Pigmentosa (RP) is the cause of Christie’s declining eyesight. “Retinitis pigmentosa is a group of eye problems that affect the retina.~American Academy of Ophthalmology

Freedom From Other’s Perceptions

“I “came out” on Instagram and openly shared my story for the world to see and join me in navigating the murky waters of RP. This was such a tremendous step for me because I never let people in on my secret shame and feelings of inadequacy due to my visual impairment and also because I worried so much about what people would think. Never again will I underestimate the greatness inside of me because of the limited thinking inside of others.” ~Christie Smith

Regardless of the reasons behind our sight loss coming terms with it can be a difficult process. Even though intellectually we know we did not cause our eye conditions many of us experience feelings of shame. In addition to adjusting to our fear of blindness and grief from loss, how we are perceived wreaks havoc on our psyche.

While I am thrilled people are opening up about sight loss we still have a long way to go. Since many don’t understand the spectrum of blindness, too many individuals living with sight loss are harassed. When seen using smartphones or reading a book people say we’re faking because we use a white cane. Imagine how it must feel to lose your sight then become a target for bullying because of incorrect assumptions?

It’s no wonder so many of us feel we need to hide our disability. We’d rather people think there is any number of things going on with us rather than sight loss. Just something to think about.

Blind Beauty Issue 34 Featured Image Description:

Featured image is a mock magazine cover titled Blind Beauty. Christie’s cover photo is a stunning black and white image. Always smiling, in this photo, Christie’s hair is swept up from the right leaving the left side curly. She is also wearing large hoop earrings.

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On Being Legally Blind

On Being Legally Blind image description is in the body of the post.

Are those who are ‘legally blind’ able to hold a job? And if so, what fields would you advise them to enter?  

On Being Legally Blind Q&A 

Recently I was interviewed by my friend and fellow blogger Wendy Robinson of Wendy’s Written WordsIt’s so nice to take trips down memory lane to see how far we’ve progressed. Following are a couple of snippets from the post. You can access the entire article here: On Being Legally Blind A Q&A

Are those who are ‘legally blind’ able to hold a job? And if so, what fields would you advise them to enter? 

This is a question I’m deeply passionate about. Yes, people who legally blind or partially-sighted can hold a job, so can people who are totally blind. The idea that people who are partially sighted or totally blind cannot hold a job is a myth. In answer to what fields? I don’t feel qualified to give advice in this area except to say, ‘find your passion and pursue it’. No one is an expert at everything! With the exception of being a driver or pilot, sight or lack of sight has nothing to do with being able to hold a job.

You have been so successful that you are generously helping others with advice on mixing and matching items in their wardrobe. Can you expand on that? 

We cannot simply look at a person and think we know their story. We are complex creatures and there is so much more to us than mere appearance. My desire to change perceptions is why I share what I know, with respect to style, from personal experience.

No doubt you need help to get to appointments, social functions, and gatherings, shopping et al. Do you have designated drivers? How do you feel in losing your independence and having to depend on others?   

As far as independence, I refocused my thinking to what I am able to do vs. what I could do prior to my sight loss. For me, this boils down to choice and I choose not to view myself as dependent. Everyone is skilled or deficient in some manner and I choose to promote my strengths.

On Being Legally Blind Q&A Image Description:

White Q&A text and white question marks sprinkled throughout are on a multi-shaded navy blue background.

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Reflecting Back Can Help Forge The Path Ahead

Golden hour glass. sitting atop sand with a with background. The sand is filtering through.

Back Down Memory Lane

Reflecting back really helps to put life in perspective. Like many people in my age group, my memory is fading and I struggle daily. Because Alzheimer’s runs in my family, it’s important to me to get as much done as possible. Looking back helps me to see how far I’ve come and confirms the path I’ve chosen.

The following lightly edited article was originally published to VisionAware a few years back when I became a Peer Advisor. If memory serves it was probably around the time I began Bold Blind Beauty. While many things have changed since this article was published, overall I’m pleased with the progress to date.

Stephanae (Steph) McCoy

A Look Back Selfie description is in the body of the post

Eight years ago, going blind was not on Stephanae (Steph) McCoy’s bucket list. Since life threw her this curveball, however, how was she to continue her plan to change the world? Life produced the formula: Obsessive Compulsive Disorder (OCD) + Life-Altering Event = World Changed!

Steph, always a little quirky, began with picky eating and excessive hand washing. Her behaviors progressed to extreme cleaning and a driven purposefulness that would make the TV character, Monk, weep. After losing most of her eyesight, Steph credits OCD for making the situation bearable thanks to many regimented routines. After developing macular holes, cataractsglaucoma, and becoming legally blind, Steph is still striving to change the world by:

  • Serving on the Board of Directors of Blind & Vision Rehabilitation Services of Pittsburgh
  • Serving as a Low Vision Committee Member and Chair of the Publicity Committee of the Pennsylvania Council of the Blind
  • Member of the Committee for Accessible Transportation (paratransit service)
  • Fundraising Committee Member of the Golden Triangle Council of the Blind (GTCB)
  • Led a team in raising over $10,000 in donations to finance research for Foundation Fighting Blindness
  • Campaigning for an international low vision awareness effort
  • Publicly speaking at various organizations on a range of vision loss issues

Because Steph is a single-minded, determined, advocate, and conqueror, it made sense that she would find a way to face losing her vision head-on by promoting low vision awareness and creating an open dialog to dispel societal myths on blindness and visual impairment. Helen Keller once said, “The only thing worse than being blind is having sight but no vision.” Steph’s vision is to educate and alter the mindset of how people view others with disabilities, and to that end, she is changing the world, one conversation at a time.

A Look Back Image Description: 

A selfie of me wearing a long-sleeve white tee with a gray vest and a Low Vision pin. I’m also sporting one of my favorite black asymmetrical wigs, the hair slightly covers my left eye. My makeup in this photo is mainly eyeliner and lip balm. A small section of my red couch is behind me as is a standing floor lamp.

For additional information:

 Visit Steph’s LinkedIn profile.

Read blog posts by Steph McCoy on the Visually Impaired: Now What? blog.