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Guest Post: 8 Things I Wish People Knew…

About Going Blind from a Degenerative Eye Condition

Originally Posted on February 2, 2016 by

  1. Phoropter (ophthalmic testing device)
    Phoropter (ophthalmic testing device)

    It usually occurs slowly.
    While there are some people who go blind overnight or in a matter of days, such as with detached retinas, following eye surgeries, or with certain types of Glaucoma, the vast majority of people with degenerative diseases such as Retinitis Pigmentosa and Macular Degeneration, lose their sight gradually, over a period of many years.

  2. Just because our vision changes doesn’t mean our interests do.
    Some people assume that certain hobbies that are sight-related, such as sports, fashion, makeup, woodworking, etc are no longer interesting or feasible after vision loss.  This simply isn’t true.  There’s nothing worse than a group of friends assuming that you no longer want to go on your annual bike-riding trip, aren’t interested in watching a football game together, or don’t enjoy shopping with them anymore.  Yes, some things may change, such as needing to use a tandem bicycle or a tether for running side-by-side or audio descriptions for movies, but these activities can still be very fun.  There are always ways to compensate and adapt when it comes to the activities we love.  I have a friend who is completely blind from RP and recently refinished his basement alongside his son, even handcrafting a beautiful wet bar, all without sight.  I’ve heard of auto mechanics who can no longer drive but still find ways to work on cars.  When someone has a talent or interest, they find  a way to continue doing it.
  3. Silhouette of a solitary woman facing the sunset.It can feel socially isolating.
    Think of all the social interactions that you use your vision for, from greeting your neighbor across the way to commenting on someone’s clothing.  From college students bonding over late night activities around campus to parents observing their kids’ soccer games, some of these experiences can feel a bit awkward for people losing their vision.  While we can still participate in many of the same activities, some of the commentary involved in a shared visual experience is missed.  Sometimes we feel like we have to fake “ooh-ing” and “aw-ing” over that cute or funny scene everyone is pointing at, lest we feel out of the loop.  We can’t dart from person to person at a party, spotting friends across the room.  Some of this is unavoidable, but friends and family who go out of their way in social settings can make a huge difference.  Even when we can’t spot you in public, we still appreciate being acknowledged and greeted.  For example.  I love it when a parent of someone in my daughter’s kindergarten class comes up to me in the grocery store and tells me who they are, even if I’ve met them before, and starts a conversation.  I can’t stand it when someone tells me, after the fact, that they were near me in a public setting, “Oh, I saw you at the movie theater last week,” but didn’t make their presence known at the time. It’s a weird feeling when people can spot you but you’re not able to see them.  It can leave you feeling self-conscious and awkward. When someone passes me and just says, “Hi Joy!” without identifying themselves, I sometimes spend the next 10 minutes trying to figure out who it was.  On the flip side, when someone says, “Hi Joy, it’s Lindsay!” I can ask how her daughter is or spout off a relevant comment, which is what people who are fully sighted do regularly in their social lives without even thinking about it.
  4. Image of a Penrose Rectangle - known as an impossible object, an optical illusion that is drawn to look like a three-dimensional object.
    Penrose Rectangle

    The things we can and cannot see are sometimes confusing, even for us.
    I can’t always explain why I can’t figure out what a picture that someone texts me is of but can read the print caption that goes along with the photo.  Perhaps it has something to do with visual memory of letters and how my brain fills in the gaps, even when parts of those letters are missing.  Or maybe it’s the contrast or the size and color of the photo that makes a difference.  Whatever it is, it can be difficult to explain to people and could even appear phony, like I have “selective sight”, but anyone who knows me well understands and doesn’t give it a second thought.  My younger sister, who works on a cruise ship, overheard one of her coworkers complaining about a passenger who had requested vision-related assistance but then appeared to be looking at something.  The co-worker assumed the person was lying about their poor eyesight, but my sister grew up watching her 2 older twin sisters struggle with vision loss and quickly told her co-worker that the passenger might need help seeing some things but not others.   Vision loss is not always a concrete, black-and-white picture for people losing their sight.  Take colors, for example, I can identify most colors in a general sense but often can’t distinguish between blue and green, red and orange, purple and brown, or even between yellow and white.

  5. Blurred image of cars on the highway from passenger's perspective.We can have “bad” and “good” vision days.
    Sometimes it depends on how sunny or cloudy it is outside.  Other times it depends on eye strain, the time of day, lighting inside vs. outside, and even how many trees or landscaping are around casting shadows, causing my eyes to play lots and lots of tricks on me.
  6. It’s not something most of us dwell on daily.
    Gradual degeneration is a lot like aging.  You don’t look in the mirror every single day, inspecting every new wrinkle, exclaiming, “I’m getting older!” just like I don’t stare at eye charts constantly, noticing every little change.  Also similar to aging, most people don’t just wake up one day and realize that they’re a senior citizen….you realize that you’re aging at various points in your life, sometimes because of an event such as a milestone birthday, but other times you just notice yourself looking or feeling older from time to time.  Typically, vision loss is similar. There are times I’ve gone to the eye doctor and been surprised at my change in vision because I hadn’t noticed it happening to the extent that it dropped, despite the fact that I could tell it was worsening.  Other times, I notice the drop and am not surprised in the least when the Ophthalmologist shows me my test results.
  7. White cane with a cork handle from Ambutech
    Ambutech

    Some of us use mobility aids like canes and dogs and some of us don’t.
    There are people who have the exact same vision who move about the world completely differently. There can be 2 people who both have 19 degrees of vision, deeming them both “legally” blind, and one of them uses a white cane while the other walks around without any mobility tool.  If there is someone in your life who you feel like should be using a mobility assistance but doesn’t, it’s usually a realization they need to come to on their own, something through a few bumps, bruises and embarrassing moments.  No one can be persuaded through guilt or fear to get assistance.  Even among those who are completely blind, not everyone uses a cane or dog.  Some, for example, use echolocation.  It’s a personal preference.  A common misconception when someone begins using a cane is that they just had a major drop in their vision.  Sometimes this is the case, but many times the person is just sick of tripping over things and is ready for some help.

  8. Solitary white rose Most of us lead regular, happy lives.
    After doing a presentation about my vision at my niece’s school recently, a couple of her classmates came up to her at recess and said, “We feel so bad for your aunt!  It’s so sad, and we almost cried during her talk!”  Hearing this made me feel like I didn’t really do a great job conveying how much I love my life during my presentation.  It made me decide to start my school presentations by telling the kids to smile and laugh because my story is not a sad one.  Yes, I have dealt with my share of sadness over having RP.  No one likes the idea of losing one of the 5 senses, especially the one that society places the most importance on, but sadness is definitely not the word that comes up for me when thinking about my life. Challenge? Sure.  Adventure? Yep. Fringe benefits? Yes please. Joy? Absolutely.

When you’re done crying over RP, there are so many things to laugh at. (i.e. On a recent trip to Chicago, I reached out to press the crosswalk signal button and began pressing on a man’s arm instead, much to his surprise.  You can’t tell me that’s not laugh-out-loud funny!)  While studies show that people who are blind or visually impaired do tend to have more nightmares, due to anxieties that sighted people don’t face, apparently these added anxieties do not have bearing on a happy, fulfilling life, as happiness studies find that blind people are just as happy as sighted folks.  Helen Keller sums this up best, “I can see, and that is why I can be happy, in what you call the dark, but which to me is golden.”

31 thoughts on “Guest Post: 8 Things I Wish People Knew…

  1. At 66 with RP, this brings back memories. It’s only been in the last few years that I can no longer see the difference between white and black slacks under my brightest light, so I’ve had a lifetime of dealing with the confusion about being blind or not. It was especially hard in school, when the teachers thought I was faking, and no one – including me – understood loss of visual field. Great list, Joy:)

  2. Beautiful and Enligthening. Thanks so much for sharing this.

    1. My pleasure Joel, I will let Joy know of your comment and thank you so much for coming by to read.

      1. You’re welcome Stephanie.

  3. Thanks for sharing. So many important things to know!

    1. You’re welcome Lynz I’m glad you found the information useful.

  4. Thanks for sharing this post. I remember when I was low vision and was dealing with some of the very things you mentioned. I don’t have RP but my vision did decrease over time. I use to wear thick glasses like the coke bottle type and used a white cane because I couldn’t see on the sides of me or down a flight of stairs when I approached them. The cane was good for stuff like that. People always thought something was mentally wrong because I wore glasses and used a cane. I would try and explain what I could see and what I couldn’t but people didn’t always get it. It can be hard to explain low vision sometimes. People just assume either you are totally sighted or totally blind. They don’t understand there are variations of vision loss.

    1. I know exactly what you mean Empish. Even some of my friends who have been blind since birth have said that they would imagine that low vision has its own set of issues especially for those of us who lose sight later in life.

  5. Ditto to what others have said, this is a great post Stephanie, very well summarised and explained by Joy. Even for someone with a relatively minor visual impairment like myself, those points are still very relevant and important for people to understand. Thank you for sharing it. 🙂

    1. I’m glad you liked it Glen. Yes, I felt Joy was so eloquent in this piece and so much of it resonated with me. Thankfully I’ve been blessed with a very supportive community here that includes both sighted and people who have sight loss. We’re all learning and that’s a good thing. Also, I try to encourage an open forum so that people aren’t afraid to ask the difficult questions.

    2. Thanks Glen! Glad you found it helpful!

  6. Blindness like any other ailment is just a condition that someone has and not the person. It doesn’t take away their inspiration, desires and living a fulfilling life. Great post.
    Let me use the opportunity to invite you to the Bloggers brunch that I am hosting over the weekend Saturday – Sunday. I believe it will be fun to mingle with others. The invitation is titled, It’s Brunch Party Time. I will send one out again tomorrow. My regards.

    1. Hi Jacqueline, I’d love to take part in the Bloggers brunch. I have my grandson during the afternoon on Saturday but I’ll join after he leaves. If I may ask what is your timezone? I’d like to be timely however I know we are in different timezones. I’m located in the US eastern time zone.

  7. Thank you for an excellent post!

    1. Thank you Charles for your kind comment. I’ll let Joy know. 😀

    2. Glad you liked it!

  8. Wonderful post, Stephanae! I wonder if you realize what an inspiration you are…not just to the ones losing or having lost their sight…but to sighted people as well.
    You make us stop and consider things that many of us may not have ever considered.
    I told you about my grandma H***. She, like you, was so unassuming about her eyesight. She, like you, never complained. 🙂

    1. Laurel, as always thank you so very much for your kind comment. I had to laugh though when I got to the part of me never complaining ;( I’ve had some serious Oscar worthy hissy fits, I just try to be my professional best on here 😉

      1. Hissy fits are okay…they let us know that we still feel. 🙂

      2. Yes, they do indeed. <3

      3. Ha! Stephanie, we have all had our Oscar-worthy moments!

      4. Hahaha, mine were so bad at times I could have easily been mistaken for a small child having a temper tantrum.

  9. Thanks for sharing this. My mom is almost blind now from macular degeneration and there was useful info here that I didn’t understand. Excellent post.

    1. Thank you so much for this comment. I’ll be sure to let Joy know as this is what all of us going through similar circumstances are trying to achieve. It is different for those of us who lose our vision later in life. While I don’t consider myself advanced in years, I began having sight issues in my mid 40s and my particular situation was one that should have occurred in my 60s or 70s. If you don’t mind my asking how is your mom handling her sight loss?

      1. My grandfather also had macular degeneration, so she knew what to expect to some extent. She’s doing well though managing a house is becoming more difficult (she’s in her 80’s and complains more about her balance than her vision). She has a reader and still reads my books though I’ve offered to record them for her – she’s a trooper. She’d like to move to senior housing while she can still see a little, but my dad refuses to live with “old” people. The Peach family drama. Thanks for asking. I’ll definitely stay tuned to your blog. I can use all the advice I can get! 🙂

      2. Bless her heart. I had to chuckle at your dad’s response to moving in a senior housing facility. As another resource, visionaware.org has a pretty comprehensive packet of information for people new to vision loss as well as quite a bit of additional helpful tips from peer advisers.

      3. Thank you! I will definitely visit. 🙂

    2. Thanks Wallace! Glad you found it helpful! Feel free to send your mom this article or have her visit us at doublevisionblog.com! 🙂

      1. Hey Joy, sometimes I amaze myself with my hindsight brilliance. Going forward I will place a notation for people to link up with all of my guest’s specific blogs. Thank you for replying to these comments. 😀

Comments Are Always Welcome