WHY I AM SO THANKFUL TODAY

Sometimes having low vision takes me to dark places in my mind. Why did this happen to me?  What is my future? Is life with a major disability worth living?

LINDA CARTER & KEN MILLS

I’ve learned that such periodic pity parties will always be part of my life. These moods will pass. To me the glass of life is half full and each day brings renewal and hope.

A big reason for my positive spirit is the companionship of my wife and soul mate Linda Carter.  She is my rock, my best friend and my guide as my vision has deteriorated.

 A few weeks ago Linda surprised me with a short story she had written about when she first noticed the impact low vision was having on my life. I appreciate her point of view (pun intended) because I spent ten years denying my vision problems.

Linda’s story is about our trip to Hawaii in March 2004, approximately a year after the eye surgeon burned the retina in my right eye. She is kindly letting me share her thoughts today:

Hawaii. God the air smelled good. I remember that. Ken and I popped off the plane at the Honolulu airport in March 2004. We got our stuff and headed to the Marriott Waikiki hotel. We checked in. We were hungry, so we went looking for something unique to eat.

We didn’t have to go far.  Across the street from the hotel there was a café that was filled with people. I welcomed the scent of My Tai’s.

We were descending a staircase into the café.  I noticed Ken was having trouble negotiating the stairs.  He seemed hesitant and off balance. This was the first time I noticed how Ken’s sight was affecting his life.

The bottom line is when you are full sighted, like me, you can easily miss the clues of your partner’s disability. It would be a couple of years before I truly understood what was happening with Ken’s vision. After all he still has crystal blue eyes that I have always adored.

 I learned to take our time when we walk together. I learned that streets, hallways and rooms have obstacles that could create a problem for Ken. I made him aware of cracks in the pavement, oncoming traffic and what to expect from the next staircase. I see how his hands do not always meet my hands when he is trying to pass an object, like a glass or maybe a picture.

I became Ken’s chauffeur whenever I could, lessening our worry over traffic and busy streets. I drove him to his surgeries and waited patiently but anxiously for the report. I took him to his follow up appointments at the University of Minnesota Eye Clinic. I got to know his brilliant surgeon Dr. Martha Wright. I bought him flashlights and read all I could about coping with low vision.

I am doing everything I can to meet Ken’s needs, but I told him early on that I would never understand what he was seeing or not seeing.

What I can do is listen and learn and remember to laugh in the face of adversity. Together, we are sight and light.

Linda Carter

Linda, I am so thankful for your love and support.  It literally means the world to me. I love you and I believe in you.

My advice to you, dear reader, is tell the helpers in your life that you love them. Do it today.  Don’t take them granted. Cherish these moments and be grateful for the blessings your helpers provide every day.

WAYS TO HELP PEOPLE HELP YOU

Sometimes when I tell people about my vision challenges, they are ask if there is anything they can do to help me. Though I am tempted to say Yes, please rotate the tires on my car, I usually can’t think of anything specific.

Most people who ask are gracious and sincere but sometimes helpers can overdue it.  The key is to practice low vision etiquette. 

A friend recently recommended an article [link] called Blind Etiquette: Six Ways to Be Gracious Around People with Visual Impairments. 

The article, written by Stefanie Clouter, has tips that also apply to people like me who experience low vision. 

Clouter begins with this advice:

There’s no ‘secret’ to interacting with people who are blind. They just want to be treated like everybody else, with courtesy and respect. So relax and act naturally.

Clouter’s etiquette tips for the blind (shown in the image on the right) are adaptable to low vision situations. 

 Here is my version of Clouter’s list:

KEN’S ETIQUETTE TIPS TO ASSIST FOLKS WITH LOW VISION

1.) If you think someone who has low vision may need help navigating the route from here-to-there, ask first.

Folks with low vision often don’t see a person approaching them. Touching or bold offers of help can be jarring. So, it is best to be calm and polite.  Ask the person with low vision if they need help. That way the person has a chance to say “yes please” or “no thank you.”

• If your help is accepted, tell this person to grasp your arm just above the elbow and then lead the way.

It is easy to guide the person because they feel your movements. Walk at a comfortable pace as you get the person on the road to their destination.

• If you see someone who is visually impaired about to encounter a dangerous situation, be calm and clear when you warn the person.

Don’t yell Hey you, watch out!

Use clear descriptive language such as “You are approaching a curb. It is right in front of you.”  Use directional language that is specific such as “to your left” or “directly behind you” rather than “it’s over there.”

• Even if you know the person, identify yourself when you are approaching someone with impaired vision.

The person may not recognize you by your voice.  In a group setting, address people by name.  Announce when you are leaving the area so the low vision person doesn’t continue talking to an empty room.

• Use respectful language and avoid terminology that stereotypes the person with low vision. Like you, they are people who want a human connection.

It is better to say "a person who is blind" rather than "a blind person." If you are in doubt, ask the person.

THE TROUBLE WITH FLOATERS

Eye floaters - technically muscae volitantes (Latin for “hovering flies") - are tiny, oddly shaped objects that sometimes appear in your vision, often on a sunny day. They look like black spots, cobwebs, threads or a squishy little amoeba. They seem to drift aimlessly in your field of view. If you try to catch one, it disappears.

Simulation of Floaters

The trouble with eye floaters is that you don’t know if they are real or an illusion. They might annoy you, but they usually do no harm.

Floaters are actually small bits of matter inside the vitreous, the gel-like substance that fills about 80 percent of the eye. When the vitreous shrinks, small bits of waste are created. The particles cast tiny shadows on the retina. These are floaters.

Most people have experienced floaters, even The Family Guy:

MY FLOATERS

I can’t recall experiencing eye floaters until after the botched surgery on my right eye. After the surgeon’s light burned my retina, little pieces of the damage began showing up frequently in my sight.

The first time I remember a posse of floaters arriving was a couple of weeks after my “eye jab.” I was reading a newspaper. All of a sudden I was attacked by flies. At least that was what I was seeing.  I batted at the flies and they vanished. Then they reappeared. Did I leave a window open?

I got up to check the windows and noticed that the flies had reappeared all around the room.  Then I realized the flies were an illusion.  What was going on was going on inside my eye.

I told a friend about this experience and he had his own floater story to tell. He said a few years ago he got stoned on a sunny afternoon and drifted off to sleep. He suddenly woke up and saw what he thought were locusts all over his body. Holy glaucoma!

SOMETIMES FLOATERS MEAN THERE ARE PROBLEMS

Most of the time floaters are part of the natural process of aging. However, there are more serious causes of eye floaters. If they appear in large numbers and/or all of a sudden, get professional help. Floaters might be a warning of infection, hemorrhaging, retinal tears, and (in my case) injury to the eye.

LEARN BY PARTICIPATING IN LOW VISION RESEARCH

I am always looking for new ways to learn about low vision and how it affects folks like me. A couple of weeks ago I had the chance to participate in a research project being conducted by the Minnesota Laboratory for Low-Vision Research at the University of Minnesota. The topic is Visual Reading Technology. So I registered to become a “test subject.”

Visual Reading Technology is an important and growing area of interest because new devices and techniques have been found to be very helpful to people with vision loss. In this type of research the “test subject” is more than a mouse in a Skinner Box.  Participants like me get to express themselves and contribute to a body of knowledge that helps people cope with the challenges of low vision.

I contacted Christina Granquist, the research coordinator, and she told me how to get started. (Complete contact info is provided at the bottom of this article.)

Christina first checked to make certain I was qualified to participate. The Minnesota Laboratory for Low-Vision Research is looking for adults with low vision who read with the assistance of reading aids. The goal of the research are to improve understanding of the use of reading technologies and learn which devices and systems people prefer.  Think of it as a “baseline” for future research and product development.

Christina told me the study involves filling out an online survey. The task may take as long as an hour to complete it. Christine provided me with the web address for the survey and I was off and running.

TAKING THE SURVEY

On Saturday morning (10/29/16) I went to the survey page while sitting in an easy chair working on my laptop. Participants can take the survey

on any device Including computers, smartphones and tablets. 

The first part of the survey asks questions about the causes, circumstances and degree of my low vision.  Then it goes through a list of reading technologies and devices.  This is followed by a series of questions based on my ability to see and use sample text (an example is on the right) with various levels of magnification and fields of view. Over all, I found the survey to be easy to navigate. I completed it in around 40 minutes.

Survey participants are compensated with $20 gift cards for Target Amazon, iTunes or Starbucks. I chose Starbucks.

If you are interest in participating or want more information please contact Christina Granquist, the research coordinator, at lowvis@umn.edu.

The study is being conducted at the Minnesota Laboratory for Low-Vision Research at the University of Minnesota [link]. The project director is Dr. Gordon E. Legge.