Macular Degeneration and Me

Low Vision and High Hope

Can I See What You See?

For many years I’ve felt it incumbent to help people with better vision understand the vision limits those of us with mac degen experience.  Lately, however, I’m running into a phenomena where it is suggested that I try harder to see what someone else can see.  This is a bit disconcerting since if you don’t ‘try’ it looks like you don’t want to cooperate and if you do ‘try’ you just frustrate yourself.

First a simple fact:  we all see things differently: simple things such as weather, lighting, other obstructions or more difficult things as vision issues, medical problems, and , of course, our varying perspectives on life all impact what and how we each see.  Now having stated this, why don’t people remember this when I don’t see what they are pointing out ?

I think some of this can be directed to the popular electronic media – cell phones, tablets, computers, and so on.  The new graphics are incredible and the ability to upsize print documents is great.  But, for me, this just doesn’t work.  I have to study the page from varying directions if possible, move into better lighting or perhaps have someone point out a feature or an app – and this takes time.  Directing me to try harder takes my attention away from what I’m trying to ‘see’ and refocusing takes even more time.  If there’s glare or low light forget it!

And to top it off, the discovery that I really am not seeing some of the things I used to see makes me sad and a little bit angry.  As someone who is proud of her reading ability and attention to detail this is also embarrassing.  Of course, that’s my problem to deal with.

So what to do in these situations?  Do you have some thoughts about what you do?  I’d love to hear.

Meanwhile, I’m giving up the thought that I’d be the state’s major witness in the crime of the century and, from the witness chair, point dramatically to the perpetrator announcing “It was YOU.” Unfortunately pointing directly at someone is a vision skill I lost a long time ago!!

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6 thoughts on “Can I See What You See?

  1. As a person with ‘normal’ vision, it was immensely helpful for me (besides me always being curious…) to see a bit of what you see by using that app for smart phones you told me about a while ago. Wow, what blur!! (it can show what people with different vision challenges see, including macular degeneration). Unfortunately I don’t have that phone anymore, and can’t remember what the app was called… Anyway, directing people towards an actual experience of what it’s like to see what you see might be worth 1000 words so to speak. Bet they won’t tell you to try harder after that…!! (That makes ME frustrated just hearing about it…!)

    • Hi, Cordula – good to hear from you and thanks for mentioning that Vision Simulator. It’s called VisionSim from the Braille Institute and can be downloaded onto most Smart Phones and the iPad. It’s now available through either Apple or Google Play and has been enhanced to show many different eye diseases. Also displays for Mac Degen show reduced acuity, depth perception, contrast and sensitivity to glare. Excellent. Maybe now is the time for me to buy that iPad and be able to quickly show someone what I can see (or not). Go to http://www.brailleinstitute.org and scroll down the front page to the area called Mobile Applications. This is a great app for you, your friends and family whether or not they have a low vision person in their circle. It reminds us all that learning about differences leads to better understanding. Thanks for your support Cordula. Hope to see you soon.

  2. Robert F. Kuhlmann on said:

    Dear Pepi.

    My wife has M.D. Her mother had it and about 18 months ago, we went to an Eye surgeon specializing in M.D. He has been giving her shots in her eye to stop the hemorraghing blood vessels. Also, we ordered “macula” and she has been taking it in conjunction with the short. While she still has trouble seeing, she has leveled out and is dealing with reality.

    In 1960 while in the Air Force, I was sent to Anchorage, Alaska as a radio operator. I remained there for 27 months. Due to the job description, Iused headsets (called muffs) that covered my ears, which resulted in ringing in my ears. It got progressively worse as time wore on after I was discharged in 1962.

    In 2001, I went to the VA and after wrangling with the paperwork, I received a 60% disability due to my hearing deficiency. Now, I cannot hear anything out of my right ear and I have a 20% loss in the left ear. I am relating this story to tell you how I handled my hearing loss.

    FACT: Since I have been in the VA, I routinely see Veterans who have lost at least one leg!.

    I came to accept the fact, that my hearing deficiency, was never going to improve no matter what I did. Nothing medically can make me hear any better. As difficult as it is, I have grown to accept it. I realize everyone can’t do that. But, as you have experienced, you get frustrated, angry, etc., knowing your situation is what it is and nothing at this time, can make it better. It will make your life miserable, unless you can come to terms with it.

    If you or any of your readers can accept the loss, and deal with what you have, I will promise you, your life will be much more palatable. We pray that medical technology may find a solution. But for now, think about your hearing and what it might be, if you had severe hearing loss as I have. I cannot compare hearing loss to vision loss. It doesn’t come close. Vision trumps hearing every time!

    I marvel when I watch sporting events, such as running, and the handicap those who have lost a leg, tough it out and accept they don’t have to feel handicapped, if they don’t have two normal, good legs. When I first saw the “prosthetic” leg that looks like a spring off a car, I had difficulty watching. Now, I can’t take my eyes off them, and think, what a blessing that they not only accepted the fact that they are different, but they found a way to “live with it”.

    But, at the end of the day, they must take off their “prosthetic” leg and return back to reality that they are missing something visible. However, people with M.D. and vision liabilities, as we both have, when our head hits our pillow at bedtime, we know that we are “whole”. How blessed we really are.

    There is a very old saying, “I complained about not having new shoes, until I saw someone who had no feet”. So profound.

    I am not sure what I have said helps, or not. Please accept it as “food for thought”. If it helps anyone, I am pleased that I was able to help one person, live with their unfortunate situation.

    Robert

    • Robert, what a great commentary and so insightful of you to draw these comparisons. I am thankful for readers like you who share their stories so we all can learn. I like to keep my posts real and today’s was weighing heavy on my mind because I was really embarrassed when I realized how much I was missing so I wrote about it hoping to hear from folks like you. Accepting yourself is part of the process whether with vision loss, hearing loss or anything else. Thank you from my heart.

  3. nystagmite on said:

    I was partially sighted from birth, and your entry here reminded me of one of my teachers, who no doubt thought it was big and clever to say, “If you can’t see this, open your eyes wider”. It’s sad to realise that there is still such ignorance in the world.

    But there is, and I too can’t always get across to someone else what it is like to deal with poor sight.

    My own answer to the problem of seeing what you’ve got on your technology is to use the speech functions. Not for editing photos, no, although it helps there, too, but for reading your blog, for instance, it would be very tedious and headachey to read it by sight. Now that quite cheap Android devices and very expensive Apple ones all have accessibility features, as do computers, they are, at long last, an asset, and we all have the options of using large fonts, reverse colours, speech, and vibrations. Although I still work my eyes quite hard, and look at things the way you do, from different angles, to use the best bits possible of my remaining vision, there are times when that’s the wrong approach.

    Away from the technology, things are a lot more complicated, of course. Getting on the right bus or finding out what that bright yellow object is across the street can be fairly complicated unless there’s someone around to ask. Mind you, not long ago, a bus driver said to me, “Of course it’s a number ten, it says so big enough, doesn’t it?” Well, I did wring the information out of him amongst the abuse! So much for asking someone.

    Faced with automated checkouts at the shops, I have to tell someone that I need to be served by a human. This is an example of carrying on doing the things you always have done, but going about it in a different way. I am finding that I need less and less assistance as I go on because I’ve found work-arounds for many of the frustrations of sight loss. Ther’s always more to learn, and I’m not being smug!

    I find the guide dog I now have is a great ice-breaker, and I don’t have quite so much explaining to do.

    • Thanks for commenting on this post. Some of your descriptions brought a lump to my throat but also made me chuckle because I can relate. The bus story is so typical of how we humans have lost our way when communicating – but that’s for another time. One of my favorite stories is asking someone at a department store information kiosk where pet supplies were located and having her, in a very cheery way, wave her had and say ‘over there. Of course, with florescent light glare on white walls and white flooring ‘over there’ was nothing but a sea of stuff. Explaining my low vision need for her to be more specific just got me a blank stare and another wave of her hand. I waved too as I left the store.

      I am amazed at the growing number of accessibility devices and am exploring many of them. I’d love to hear more about your guide dog. I haven’t written about the positive impact animals have on our lives but I feel a story coming soon.

      Thanks for your insight.

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