A Q & A Interview with Stephanae McCoy
Stephanae McCoy kindly granted me this interview and spoke candidly about her journey on handling and dealing with the issues and problems that arose, prior to and following the diagnosis of being ‘legally blind.’
Stephanae also manages a website to help others with advice to not only ‘celebrate beauty, fashion and style,’ but to also empower blind or visually impaired women to lead ‘fun, fulfilling and productive lives.’ See: Bold Blind Beauty
1. Can we go to the beginning when you were diagnosed as being ‘legally blind?’ How long ago was that?
I received my legally blind designation in the summer of 2009. This was the appointment where I was told there was nothing more medically that could be done to restore my eyesight.
2. Can you define what it means to be ‘legally blind?’
Sure, the term legally blind refers to the visual measurement one needs to meet the government’s criteria to receive government benefits. It does not define the level of functional vision a person may have.
3. How did you feel? Did you accept the diagnosis with equanimity; with rage; with resignation; with fear; or with acceptance?
This isn’t an easy question to answer because, when you know there is a possibility things might take a negative turn, it’s different when faced with the actual facts. I didn’t feel anything for several days because I needed time to absorb what was said to me. After a period of time, I went through the stages of grief, sadness, anger, bargaining, etc. until I finally reached acceptance. It wasn’t a onetime type thing because my feelings evolved as I came to terms with my situation.
4. What symptoms did you have prior to diagnosis?
Unless there is an accident that causes immediate blindness, for most people being deemed legally blind isn’t typically a onetime appointment. There’s usually a process.
I began losing my sight four years prior to being told I was legally blind. The symptom began in my left eye and was only noticeable when my right eye was closed. It was a macular hole which meant I no longer had central vision in that eye until a surgical procedure later fixed the vision.
5. Have the symptoms worsened or been pretty steady in the years after?
Cleveland Clinic, the folks I went to for second and third opinions, told me that because of my high myopia (severe near-sightedness), this was more than likely the reason why I developed macular holes. The nearsighted eye is long, thus the retina at the back of the eye becomes stretched, which can cause issues.
6. What steps or preparations did you take immediately after?
When the first macular hole appeared I didn’t think there was anything wrong with my eyesight, rather, I thought it was a side-effect of my new blood pressure medicine.
When I called my doctors the next morning, they advised me to contact an ophthalmologist immediately. I was given an emergency appointment. I felt a little bad for the eye doctor because he was so concerned about not being able to repair my eye. He told me there wasn’t anything that could be done to fix it. Apparently I still hadn’t understood the gravity of the situation but he referred me to a retina specialist (Specialist in Ophthalmology and one who also sub-specializes in surgery and diseases of the eye and retina).
As far as steps or preparations go, I only took things one step at a time. So when I went to the retina specialist and he explained he would do a vitrectomy (a surgical procedure where a gas bubble is injected into the eye, and then, the head has to be kept in a downward position for several days to weeks depending on the situation). Getting through each phase as it took place, was all I was concerned about. Getting ahead of myself by thinking I’d lose my sight wasn’t my focus, just being present while I had to go through each phase.
7. Please share the adjustments you had to make and feel free to recount as little or as much as you wish to share.
My main concern at the time of course, was my job and if I’d still be able to function at the high level I was accustomed to. Having to use a large monitor took some getting used to as was the ZoomText magnification software I used to enable me to continue using the computer. When you continue to increase the magnification the less desktop real estate you have to work with. It was frustrating not being able to see the entire picture and because I needed so much magnification, whenever I moved my mouse, the entire screen would move. Some of my co-workers were amazed I could use the computer without getting dizzy from all the movement.
Reading hard copy was another tough one, because, while the gas bubble was in my left eye and I was still able to use a contact in my right, it was real hard to focus on just about anything because I had this huge black blob moving around in my eye. When I began having issues with the other eye, I threw away all my books because I was so angry that I couldn’t read the text.
‘Makeup’ was challenging because I just couldn’t get close enough to the mirror to use some of the products I used for most of my life. Liquid eyeliner was quickly discarded as was some of my foundations because I couldn’t tell if I was blending appropriately.
Reading the label on new over-the-counter medications was a challenge, because now I had to rely on magnifiers but because some of the text is so small and the magnifiers I had at the time either weren’t strong enough or they made the text blurry.
Even things as simple as taking a shower suddenly became a challenge because I had to be careful watching my step.
Giving up driving was one of the most difficult things I had to do during this entire process. I was so used to calling my own shots, going where I wanted, when I wanted and most of all not depending on anyone. I still don’t like asking for help but it’s a learning process.
8. The learning curve must have been quite steep. Can you describe the hardest problem you have had to face?
Except for work, the learning curve wasn’t too bad because my sight loss was a gradual process. Technology has always appealed to me so it was just a matter of transferring what I already knew into using different methods to complete tasks. I was more frustrated with not being able to see the faces of my co-workers, family, and even myself, it was scary just being unsure of my surroundings and learning to trust only what was immediately in front of me.
The hardest thing for me was admitting I needed to use the white cane. Not being able to see well was hard enough, but then to have to become so conspicuous was painful.
9. No doubt, you had to practice patience with yourself and with others. Do you have any sage advice in this regard?
I wish I did, but unfortunately patience is not my strong suit and that hasn’t changed. I get irritated but I keep on pushing until I get it so I guess that’s my advice, ‘to not give up.’
10. How did your children and other members of your family feel?
I felt bad for them because I think at first, we all thought this thing would just go away and I would be fully restored, but of course that didn’t happen. It sort of reminded me of the first ophthalmologist because it was out of their hands. There wasn’t anything anyone could do for me. But today they, as well as close friends of mine forget I can’t see well, mainly because I’m the same person. It does aggravate my sons when I get nervous as a passenger in the car, because my depth perception is non-existent but I can see brake lights when they come on and will be jumpy because to me it looks like we’re about to crash.
11. Have they been a help or a hindrance to you?
They forget I can’t see, so it can be a hindrance, especially, since I don’t like to ask for help. So when I do ask, it’s because it’s a last resort and sometimes, patience is stretched on both sides.
12. Can you share your difficulties in regard to your kitchen, food, layout and preparation? Are you able to cook?
I don’t really have any difficulties in this area because I’m not a fan and never have been of the kitchen. I much prefer being on my computer, but I do use these fluorescent bump-dots on my stove and Keurig (coffee) machine. These are tactile adhesive bumps that I can put on dials and the off positions to ensure I don’t burn down the house.
Most of my difficulties happen when other people are at my place and they move things or use clear glass which I’ve since gotten rid of. For example if someone were to put a glass in the sink, I could break it not knowing it’s there because there isn’t contrast. Which brings me to the point that today, there are so many devices to assist blind people or visually-impaired people who love to cook. Like, I have a cutting board that is solid white on one side and black on the other, so it provides contrast to lessen the chance of me cutting myself. There are also cutting guides to protect fingers, oven rack guards to prevent burns to the arms when reaching in to remove hot dishes. Then there are brightly colored, large print/braille measuring cups, spoons and talking cooking-thermometers, timers, etc.
There are residential, personal-adjustment to blindness programs that take people through all aspects of daily living, from self-care, house cleaning, laundry, cooking, etc.
13. If so, do you cook ‘tried and true’ meals or are you adventurous in trying out new recipes?
I’m definitely not adventurous and if I could afford it, would probably order in every day. Cooking has never been my thing, it was one of the things I told my ex-husband that I wouldn’t do and that was before I lost my vision. It worked out well though because he liked to cook.
14. How do you handle house-cleaning?
I suspect I’m not as OCD over housecleaning like I used to be, because I’ve decided to let some stuff go. Pre sight-loss, I was a germophobe and extremely fanatical about keeping my place spotless. While it might not be as spotless as I would prefer, I don’t worry about it, because my focus is on my advocacy and I realize at long last that I cannot be an expert at everything and I no longer want to be.
15. You take pride in maintaining your sense of clothing style. Has it been difficult for you?
Because I’ve always taken pride in my appearance, this hasn’t changed. The only difficulty I have is in determining shades of color, but thankfully the color-identifiers are getting better and better every day. I don’t rely on them now because I try to keep my color palette rather neutral.
16. You have been so successful that you are generously helping others with advice on mixing and matching items in their wardrobe (@ Bold Blind Beauty ). Can you expand on that?
After I lost my sight, then later had to rely on the white cane to get around, one of the things I noticed immediately is how people treated me differently when they saw the white cane. Many couldn’t understand why a person who appears to see would use a white cane. All they saw was an attractive, well dressed woman and the white cane just didn’t make sense. This is a problem! I realized I had a hidden disability that people couldn’t comprehend because to them I looked “normal.” My passion then set me on a path to change this thinking. 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. I’m saying all this to say, that helping others by sharing what I know from personal experience, in respect to style, is driven by the desire to change perceptions.
17. You are sharing your wisdom via the ‘world wide web,’ and are utilising electronic tools that many have not heard of. Can you provide some details such as: description of tools and their purpose; how much they cost approximately; where they can be purchased and your opinion on the tools?
If ever there were a time to be blind or sight impaired, today is it! With technology ever-evolving, there are so many tools at our disposal that we can do most anything that people with sight can do. I cannot get into all the specifics here, because that would be an entire post in itself. The tools I use don’t cost me anything outside of the original hardware purchase.
I use Windows built-in accessibility which consist of a narration and magnification software. My Galaxy Note 4, I’ve set up to use the largest font and it does have speech software built-in but I’ve not quite got the hang of it yet. With so many apps to choose from today I no longer needed my video magnifier because my smartphone can do everything a handheld magnifier can do. ZoomText by AiSquared is the magnification/narration program I used previously and it ranges from $400-$1,200 depending on the version.
CCTVs are monitors with cameras that magnify hard copy text.
Video magnifiers are handheld magnifiers that offer several levels of magnification, contrast and can even take photos for closer examination. The model I had was kind of clunky but the newer models are more-streamlined.
Scanners and text-to-speech, reader software such as Kurzweil allow the user to scan hard copy to the computer, to be read. This comes in handy for reading mail, articles, etc.
18. 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?
It was difficult giving up driving, but it was something I decided to do when I felt unsafe behind the wheel. Also, I wanted the decision to be mine and not a doctor’s, so I have no regrets in giving it up when I did. Sometimes, I still miss driving from time to time but it’s more of a fleeting thought, and I move on.
I do the vast majority of my shopping online because it’s so much easier and convenient. When I go grocery shopping, typically, one of my sons takes me and as long as I know the layout of the store, I’m usually fine on my own. There’s always those instances where I need something and I’m not sure where it is, but when I was fully sighted, I experienced this as well.
When I have to go to meetings or appointments, I typically use paratransit (special transportation service that can be used by people with disabilities) as I do not have a designated driver, although I’ve thought of going this route only because it would provide greater flexibility but on the other hand would be more costly. As far as losing my independence, I had to refocus 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.
19. How do you shop for outfits?
I never liked shopping at the mall or trying on clothes, so buying clothing online has been a godsend to me. For some items, I’ll buy the same thing in two different sizes, knowing that I’ll return one and keep the other. My only regret is that this option wasn’t available years ago. Shopping from the comfort of my home is the BEST!
20. What do you miss most in ‘not seeing fully?’
Initially it was frustrating because I missed seeing everything. But as time went on and I was able to adapt, I really don’t think about what I miss because I’m so grateful for what I have.
21. Akin to the adage of ‘it’s better to have loved and lost, than never to have loved at all’; do you feel it is better that you’ve seen the beauty of scenes and life prior to losing part of your sight?
I was always grateful for the eyesight I had prior to losing it, and when I put everything in perspective, my sight was always very poor. I was just fortunate enough that it was able to be corrected for many years. Each year that I received a new prescription, I would take a moment to soak up everything my eyes could clearly see and just marvel at the beauty all around me. I don’t know that I would say I feel better for having seen prior to sight loss, but I am grateful.
22. Are you still able to watch and follow a story on television or at the cinemas?
I can watch my TV if I pull a chair up next to it but even then I have difficulty so I prefer to watch TV programs or Netflix via my tablet, because I can view it closer than the television. It’s very seldom that I go to the theater but when I do, most of the time, I use the *Audio Description headsets which describes the action during the film. This device is not widely known and people may have to ask for them when they go to the theatre.
*For Australian patrons: Fortunately these devices are complimentary and also available in most Australian cinemas.
23. 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, because not only can people who are identified as legally blind or partially-sighted hold a job, this includes people who are totally blind. The myth that people who are partially sighted or totally blind cannot hold a job is a total untruth. 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.
24. Are you fearful of the future or feel prepared to face it?
No more than I was prior to my sight loss. I didn’t know what the future held then and thankfully I don’t know what’s in store, but I’m eager to continue living and doing what makes my soul shine.
25. Do you have any advice for anyone facing a ‘legally blind’ future?
Focus on the here and now! No one knows what the future brings. There is a time to mourn loss but there’s also a time to live and that time is now.
© Wendy Robinson All Rights Reserved
February 26, 2018
My sincere thanks go to Stephanae McCoy of Bold Blind Beauty for accepting my request to interview her and for giving this insight (excuse the pun) into the challenges of dealing with the onset and aftermath of being legally blind.
We are all faced with challenges at some point in our life. Challenges that happened beyond our control. The difference is how we respond to these challenges. You can adopt the attitude there is nothing you can do, or you can see the challenge as your call to action. ~ Catherine Pulsifer