What Do You See?

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A Question That is Difficult to Answer

As a person with a visual impairment, I am asked this question many times and it is difficult to answer. Often, I do not know what I see…for what I am looking at does not declare itself readily. The world through my eyes is a shadowy, ill-defined place with uncertain shapes and colors. I am losing the ability to detect light and color in increments as if the world around me is a watercolor scene fading into the canvas.

Monet painting of sunrise impression credited to claudemonetgallery.org

At times, I see nothing, only darkness and danger; other times the world is brilliantly washed in diffuse light and a soft blurriness which is almost beautiful… like a Monet… Almost…

Life Through a Small Aperture

A scene as it might be viewed by a person with retinitis pigmentosa.

Currently, I see life through a very small aperture. This creates lots of challenges as anyone with Retinitis Pigmentosa (RP) can attest. I cannot see above, below or to the sides of my field of view. It is as if I am looking through a keyhole or straw. And the view is very blurry in addition. My level of vision varies depending on lighting and glare, time of day and fatigue to name just a few factors. I recall once that I was riding in a car with a friend and she wore a black dress. I casually reached over and plucked a white string off the fabric. In the next moment, she said "Oh look at that beautiful old house," directing my attention out the window. I turned and saw nothing but a hazy white-out. "I cannot see it," I replied.

Perplexed, she asked me "How is it you can see the white thread on my lap but you cannot see a big old house?" "I don't know," I replied, "it is confusing to me too." I can see some things some of the time. Many times, I run into doors, tables, windows, trees and other things in my path. I have walked off curbs and fallen down stairs due to a lack of peripheral vision and depth perception. I have sustained a variety of wounds and injuries, including a broken ankle requiring surgery, bloody knees and shins, cuts and bruises to my face, and a dislocated shoulder.

I Cannot Rely on My Vision

The thing is I cannot rely on my vision. It is faulty in the way it presents a scene to my brain. It cannot handle darkness…or too much light. I can only see bits and pieces at a time and my brain has to put the puzzle together. So my world has become constricted, unsafe, unknowable and inaccurate through my eyes. It is a confusing place to be…almost blind but not quite. And I realize it is confusing for others to understand this landscape in which I move and live.

Color, Contrast, and Light

But there are other ways to know the world in which one lives. And a little bit of vision does make a difference sometimes. Color and contrast, and light can help orient and clarify objects. In the same way, smell, taste, sound and texture can tell us about our environment. We only need to learn how to use these senses to gather information and clues that will keep us connected to the world. And what a kaleidoscope of sensory experiences awaits us if only we will gather our courage to learn, explore, and do things in a new way.

The Power of the White Cane

picture of person walking with long white cane extended

Yes, the world is an uncertain and confusing maze for someone with RP. As I was getting older, the falls were getting uglier and scarier. I began moving slowly and shuffling my feet with my eyes on the ground all the time, concentrating so hard on trying not to trip, fall or run into an obstacle. I became afraid to go out. Learning to use a cane and a dog guide gave me back a sense of confidence, freedom, and safety which I had gradually lost. Now I can walk with my head up and enjoy the surrounding environment. The world does not seem as dangerous now and I have learned to accept what I see as my reality without questioning it all the time. I am on-the-go once again!

Healthy Aging Month

doctor and patient at an eye exam

Now that I have your attention, I thought I would add in some valuable information from the National Eye Institute about taking care of your eyes.

Take Care of Your Eyes As They Age

In addition to making comprehensive dilated eye exams part of your routine health care, follow these tips to maintain healthy vision now and as you age:

  • Eat a healthy, balanced diet. Dark, leafy greens such as spinach, kale, and collard greens are especially good for eye health. Eye health benefits also come from eating fish that are high in omega-3 fatty acids, such as salmon, tuna, and halibut.
  • Maintain a healthy weight. Being overweight increases your risk for diabetes. Diabetes complications, such as diabetic retinopathy or glaucoma, can eventually lead to vision loss.
  • Don’t smoke. Smoking is as bad for your eyes as it is for the rest of your body. Smoking increases your risk for many eye diseases and conditions.
  • Wear sunglasses and a brimmed hat when outdoors. Protect your eyes from the sun’s ultraviolet rays when you are outdoors. Choose sunglasses that block 99 to 100 percent of both UV-A and UV-B radiation.
  • Wear protective eyewear. Wear protective eyewear when playing sports or doing activities around the home. Protective eyewear includes safety glasses and goggles, safety shields, and eye guards specially designed to provide the correct protection for a certain activity.

The National Eye Institute (NEI), one of the National Institutes of Health and the federal government’s principal agency for vision research, offers additional eye health information and tips for people to protect their vision as they age. Visit NEI online.

Resources

Risk Factors for Macular Degeneration

Nutrition and Dry Macular Degeneration

Questions to Ask Your Doctor


Topics:
Low Vision
Personal Reflections
Retinitis Pigmentosa
There are currently 3 comments

Re: What Do You See?



Audrey, the way you have described seeing with Retinitis Pigmentosa is so spot on - thank you for describing it so clearly...it is how I see too, or not, depending on the day, the light etc. I went 'ouch' hearing about all your mishaps knowing how those knocks to ones body can strike at any time, one minute you think you know where you are going and the next, you have fallen down or knocked your head or in one instance, I fell off a verandah and hit the back of my head. We are brave to keep walking into the unknown of each day because...there's too many other things in life waiting for us to enjoy...health and happpiness to you as you journey on with RP.


Re: What Do You See?



I have RP too, but when I could see, I could only see out of the corners of my eyes. I did not have the tunnel vision that you described, which is typical, so it took ten years before the eye doctors recognized RP. My teachers noticed it when I'd turn my head to look at something. This kind of vision is very confusing for sighted helpers, because most people think you can either see or you can't. This article explained it very well. Nice job.


Re: What Do You See?



What an excellent article, Audrey! I especially liked this line, "I don't know. It's confusing to me, too." SO many people have asked me what I can see over the years and I used to think: how can I not know? I didn't know what I wasn't seeing, let alone what I could! As you said, it varied from day to day and situation. Yesterday, I got disoriented in the ropes at the bank. Another customer started guiding me. I had a good laugh and left. Out in the parking lot, I saw the man again. He had an enormous dog with him--so big he looked like a horse! So I commented on this. The man said, "How can you see him now and not before?" Before? He went on to clarify, "You almost tripped over him. You were so close to him. If I hadn't guided you, you would have been on the floor!" I have no idea how I missed that enormous dog and yet could see him in the parking lot!! Very unreliable vision! I LOVED your article, Audrey! Will share it with others!!


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