Discovery Eye Foundation is pleased to present the following excerpt from a just-released inspirational book called Walk in My Shoes. It is the result of two years of collaborative effort and is a unique collection of 27 powerful stories by individuals who are experiencing or witnessing the challenges of losing not one, but two senses: hearing and sight. The writers of Walk in My Shoes offer a glimpse into living with Usher syndrome, a progressive disease leading to blindness and deafness. Walk in My Shoes speaks to the more than 400,000 people worldwide dealing with Usher syndrome, to their families, to the professionals working with them, and to the rest of the world.
All proceeds from book sales will be donated to the Usher Syndrome Coalition to help fund scholarships to its annual conferences and to support research for a cure. The writers inspire hope for anyone dealing with difficult life challenges.
MY USHER’S LIFE LESSONS
By Mary Dignan
I remember how I wanted to die, or at least for the Earth to open up and swallow me forever, when I read that memo telling me how I’d been asking questions that had already been asked and answered, and how I’d said things that were irrelevant and inappropriate at our meeting earlier that day. I had always known that the hearing problem was more of an issue than the visual field loss associated with Usher syndrome. Now, this memo was the proof that I never should have tried being a lawyer, that I had no business in this profession, and should just go home.
Instead of going home, I got up to close the door to my office, sat back down at my desk, and picked up the memo from Tom to read it again. Tom was my supervising attorney, and we had both been looking forward to that meeting with a potential new client. The work would be on an issue that no one at the firm knew better than I and we were sure we’d close the meeting with the retainer agreement in hand.
But the meeting just didn’t go well. It started off well enough, but there were some odd pauses in the conversation, moments of uncertainty and careful courtesy, and I didn’t feel good about it when it was over even though we did, in fact, end up with the retainer agreement. I was still thinking about the meeting a couple hours later when Tom’s secretary came into my office and handed me an envelope, sealed and marked “confidential.”
It was a memo from Tom. “Mary, I need to make you aware of some things I observed during our meeting today.” He listed specific things I’d said and described how I’d asked questions that had just been discussed, and how I’d said things that were irrelevant to the actual conversation. He said he and the client both knew I wore hearing aids and assumed I simply hadn’t heard things accurately. He said that because I had an excellent reputation as a truly competent professional, and because he and the client knew how well I knew the issue, they made allowances for me, and we got the account. Still, Tom was concerned. “Mary, I’m wondering if you’re not hearing as well as you used to, and if there is anything we can do to help.”
My hands were trembling as I put the memo back down on my desk, and I felt a hot flush rise up from my toes to my face. God, what an incompetent idiot I must have sounded like. I was even more embarrassed by the courteous smiles and patient repetitions, the polite allowances they had made for the incompetent idiot. It would have been better if someone had just growled at me to go put in some fresh hearing aid batteries.
But, when I read the memo yet again, I began to appreciate the inherent respect and sincere consideration Tom was showing me. Instead of confronting me with the painful truth, Tom could have just stopped working with me. He could have started whispering behind my back: ”Uh, best not give that assignment to Mary, she can’t handle it.” Or, “No, Mary’s not the best one to attend that meeting, she can’t handle it well.” And I would have slipped into miserable mediocrity.
He didn’t and, instead, he came to me and told me exactly how I wasn’t cutting it, and gave me the chance to find a way to measure up. I decided that before I handed in my resignation letter, I’d at least find out if there was a better hearing aid out there. I called my audiologist and told him what had happened. He told me I was already using the best and most powerful hearing aids available, but there might be one other thing I could do, “It’s time for you to get an FM system. Come on down this afternoon and we’ll get you set up.” This was an assistive hearing device that would enhance the use of hearing aids and therefore allow me to hear better.
I was in my early 40s then, down to less than 5 degrees of tunnel vision and wearing two high-power hearing aids. I still had good precision vision within my little tunnel. For the last 20 years of slow but steady vision and hearing losses, I had always figured out ways to work harder and smarter. It was the hearing losses that troubled me most. I’d been wearing the best high-power hearing aids for years, and was so good at reading lips and body language that it was easy to forget I had a hearing problem. But as my vision started to go and I could no longer read lips and body language well, we all began to comprehend just how deaf I really was. It didn’t matter so much that I was mowing down my colleagues in our office hallways, but responding inappropriately to clients and judges was a huge problem.
It took practice and patience to develop the skill to use my new FM system effectively, but the effort paid off. My FM system worked well because I made it work, and I made it comfortable for everyone around me to work with me.
There were several lessons, or rather reminders, for me out of that whole incident, including the fact that it’s just about impossible to die of humiliation, no matter how much you may want to. More importantly, I was reminded that everyone around me took their cues from me—if I was uncomfortable with the fact that I had to use an FM system to hear, everyone else would be uncomfortable with it too. So I not only learned to use the FM system well, I also learned to introduce myself and my tools with candor and humor.
”Hi, I’m Mary Dignan from Kronick, Moskovitz, Tiedemann and Girard, representing the State Water Contractors, and that’s my FM system in the middle of the table there. It helps me hear, and I would appreciate it if you would not touch the mike or the wires because it sends a lot of irritating static directly to my hearing aids.” I’d pull my aids slightly out from behind my ears to make them obvious and then I’d put them back, and go on. “The other thing you need to know about me is that I only see through a little keyhole,“ and here I would make a keyhole tunnel of my fist and peek through it, “which means I can see you.” Then I would point at someone else, “But I don’t see Tom sitting next to you,” and pointing at Tom I would continue, “This is a good thing because I don’t like looking at Tom anyway.”
That would generate a few chuckles. “This is my cane,” I would add, picking up my telescoping white cane from the table and opening it. “I use this to find the stuff that doesn’t show up in my keyhole when I’m walking around and it’s also highly useful for whacking people in the ankles and patooties.” More chuckles, and then we’d move on and get down to business.
I learned not to waste energy on trying to cover up my vision and hearing challenges. That meant I had more energy to focus on doing my job, and doing it well. I didn’t worry about attending conferences or night meetings, because I learned how to use my white cane to get around on my own safely and gracefully. I also learned to ask for and accept a helping arm with grace. I learned that if you are good at your work, and especially if you are a good team player, your colleagues will be willing to make any reasonable accommodations you need. Even before the Americans with Disabilities Act (ADA) and the term “reasonable accommodation” joined our vocabulary, I had no problem getting hearing-aid-compatible phones, lighting and other low-vision aids, adaptive computer technologies, and even cab rides when I had to stop driving.
I learned that when my colleagues knew I was putting my best effort into making things work, most of them were willing to put in a little extra effort themselves to help me out. Sometimes it was as simple as giving me an extra few seconds to get my FM system set up before they started the meeting, or steering me around pillars, potted plants and people that seem to always get in one’s way at a crowded conference, or giving me a ride home. Sometimes it was sending me a memo telling me honestly about some problems I needed to be aware of in order to figure out ways to solve them.
The FM system was a good solution for a few years. It turned out that, apart from the Usher Syndrome, one of the reasons I kept losing more of my hearing was an acoustic neuroma brain tumor that grew out of the cochlear nerve to my right ear. The surgery to remove the tumor saved my life but exacerbated my hearing and vision challenges so much that I had to give up my legal career.
Ten years after the brain tumor surgery I received a cochlear implant, which greatly improved my hearing. I still have trouble with background noise, and I can only hear out of one ear, but I hear better than I ever could before. It is the one thing in my life that has gotten easier. I am 60 now, with almost no vision left except some high-contrast shapes in a world of murky shadows spiked with glare.
Those lessons I learned years ago still apply today and I have come to realize that this is because they are Life Lessons, not merely issues particular to Usher Syndrome or any other disability. I have also come to realize that part of learning and developing one’s abilities is as much a lesson of disability as it is ability. One such lesson came from my friend Brian, an extraordinarily competent computer wizard who was born blind.
Brian can listen the way I used to be able to read a thousand words a minute, and his orientation and mobility skills are awesome. We often talked about the differences between being totally blind from birth, and going blind later in life. Apart from the life adaptation and grieving issues, the main differences we noted involved the ways we perceived and comprehended the world around us. I told him about a totally blind guy who had a hard time wrapping his mind around the concept of transparency. He just couldn’t make out how a hard cold pane of glass that he could rap his knuckles on was something you could “see” through.
“Oh, I don’t have a problem with that concept,” Brian said. “My problem is pictures.”
“Pictures?” I questioned.
“Yeah, pictures,” Brian said. “How can you put a three-dimensional world onto a flat piece of paper?”
I remember my jaw dropping as I stared at him and began to comprehend how rich and real the world is to Brian. He can’t see any of it, but he knows it intimately. He moves in a world that he perceives physically and kinesthetically through all his other senses. He is always aware of how his surroundings feel, smell and sound. In a lot of ways, he is much more aware of and intimate with his world than most sighted people who superficially see their worlds from a distance and from a flat piece of paper.
Brian taught me that even though I am losing all my sight, I still have a rich world to perceive through touch, taste, sound, feeling, smell and experience. This, too, is a Life Lesson, not just an Usher thing, but it is a lesson sweeter because of Usher syndrome. It does not lessen the pain of losing my vision, and it doesn’t even necessarily make my life easier. But it does give me hope and joy. It is the reason I’m still doing my mosaics (with a little sighted help here and there), the reason I’m still in my kitchen baking from scratch and making up new recipes, the reason I can tell when I’m on the beach or in the redwood forest, or even just out on my patio enjoying the evening breeze and garden scents. And it is the reason I know I still have a good life to live.
ABOUT THE AUTHOR
Mary Dignan was diagnosed as mentally retarded before the moderate-severe deafness was diagnosed close to age five. She was then fitted with hearing aids and attended public schools. At the age of 20 she was diagnosed with Retinitis Pigmentosa and, years later, was told she had Usher syndrome, type 2.
Ms Dignan earned a B.A. in English/written communication from Santa Clara University in 1976. Her 21 year career in agriculture and water resources management issues includes work as a news reporter, legislative aide to the U.S. House of Representatives in Washington, D.C., and the California State Assembly Committee on Agriculture in Sacramento. She earned her juris doctorate with distinction from the University of Pacific-McGeorge School of Law in 1994 and practiced law until 1997. She now creates and teaches mosaic art and her work has been shown in several public venues including: Sacramento Society for the Blind and the Canadian Helen Keller Centre in Toronto, Canada. Her community service includes serving on the Sacramento Board of Supervisors’ Disability Advisory Committee, and on the Board of Directors of the FFB, Sacramento Chapter. She is a present member of the Sacramento Embarcadero Lions Club. Ms Dignan lives in Sacramento with her husband, Andy Rosten.
Vision loss is feared more than the loss of any other sense and is considered to affect the quality of life more than most other issues. When it comes to children, even partial vision loss can be damaging because it can affect the way that your child learns and develops. There are several different types of issues that may affect your child’s vision. Awareness is key to prevention and treatment.
Refractive errors such as nearsightedness, farsightedness, and astigmatism are the most common types of issues that affect children’s vision. Since children are working to constantly adapt to their surroundings, they may not realize that they have a vision problem and the issue may manifest as an inability to focus, chronic headaches, or poor eye-hand coordination. In most cases, these issues can be corrected with glasses or contacts, but extreme cases may require surgery.
Alignment disorders are generally more obvious than other types of issues. One eye may drift to the side, an eyelid may droop, or the surface of an eye may appear cloudy, affecting the vision. In some cases, however, the condition may be intermittent, so it is important to continually look for these symptoms and alert an eye doctor to any concerns. Alignment disorders may be corrected with surgery, an eye patch, eye drops, or a combination depending on the cause.
Pediatric retinoblastoma is a type of kid’s eye cancer that usually affects children under six years of age. About 95 percent of children diagnosed in the US are able to be treated successfully and a majority of these children retain most or all of their sight. The prognosis for retinoblastoma improves greatly with early diagnosis and treatment. One of the most common warning signs that you can look for is a white glare on the pupil when it is directly exposed to light.
Diseases and Infections
Diseases and infections such as conjunctivitis, styes, and blocked tear ducts are usually minor problems that are easily resolved. However, these issues may develop into larger problems that affect the vision if care is not taken. Conjunctivitis may resolve on its own depending on the cause, but the child should be kept away from others during the healing process to avoid infecting others or being exposed to other contaminants while the eye is sensitive.
Blocked tear ducts may be opened up using massage techniques recommended by a pediatrician or ophthalalmogist. Allowing the eyes to dry out may be dangerous for the vision, so drops may be needed to keep the eye moist while the tear ducts are blocked. Styes are caused by an infection in the eyelash follicle, so it is important to keep the area clean so that the infection can clear without causing damage.
By working to spot potential issues, you can help to preserve your child’s eye health and vision.
Your eyes are your window to the world – but your eyes get a lot of extra strain thanks to the advent of new technology. Especially at work, we’re looking at screens of all different sizes and types all the time. And what happens to our eyes can be more than just a case of tired muscles; in fact, it’s got a name – computer vision syndrome.
The cause of that is obvious – lots of screens, as we said, and often multiple screens. In addition to computer vision syndrome, sufferers can feel headaches and eye fatigue among other symptoms. Luckily there are steps you can take to reduce or mitigate the chance of eye strain. Setting up a work station properly can help, as can anti-glare screens or placement of technology in relationship to sources of natural light.
If you’re focused on the health of your eyes, this graphic is an absolute must-read.
Program Manager at Quill.com
Lens manufacturer and eyewear giant Essilor has produced the short video below to explain the complexity behind the human eye and how your eye may have evolved. Explore the components that make-up a human eye, from light sensitive stigma used by single-celled organisms to the lens you’re using to read this article. They have also written an article about the “Top Modern Eye Dangers and How to Prevent Them” to help you take care of your remarkable eyes.
Eye strain is a very common condition, and though annoying, is rarely a serious condition. However, the symptoms of eye strain, or eye fatigue may lead to other vision issues if not remedied. Itching, burning, and tired eyes are all common symptoms of eye strain.
Eye strain can be easily avoided if precautions are taken at home, outside, and especially at work. Taking the proper precautions will significantly reduce your risk of developing eye strain or fatigue.
Nearly every part of your daily life involves the use of your eyes. This makes avoiding common eye strain activities difficult to do. The usual culprits behind uncomfortable eyes include reading, writing, and driving for long periods.
However, the innovative tech devices attached to us at home, work, or even walking have become the most common cause of eye strain. Staring at your laptop, smartphone, tablet, or playing video games for long periods will most certainly result in eye fatigue.
In fact, approximately 50 to 90 percent of people who work on a computer suffer from computer vision syndrome. Researchers suggest up to 10 million eye doctor visits per year are the result of computer related vision issues. Let’s focus on a few ways you can prevent eye strain at work, especially if you stare at a screen.
1. First Things First, Get an Eye Exam for a Professional Diagnosis
Your eye strain or vision issues could be the result of computer vision syndrome. However, it may be a warning sign for something more serious. This emphasizes the importance of getting an eye exam before your vision problems get out of control.
If you are experiencing discomfort, double vision, and/or a significant change in vision, an underlying medical condition could be the cause. The Mayo Clinic notes that multiple factors play a role in how often you should get an eye exam. Age and your vision all have an impact.
2. Take Control of Your Computer Settings for Better Eye Health
One simple solution to eye strain issues is to adjust your work computer’s settings. This easy first step in fatigue proofing your workplace will only take you a few minutes. However, the long-term benefits are clear.
• Make your computer’s display brightness the same as your work environments.
• Make your text size and contrast easy to read, because if you’re leaning in or squinting to write or read, it’s time for a change.
• Decrease your computer’s color temperature. This will emit less blue light to fry your eyes.
You can apply these simple device adjustments to your tablet and smartphone at home as well. This will keep blue light to a minimum, which has been identified as the cause for many vision related issues, such as eye strain.
3. Take Breaks and Blink More Often to Reduce Eye Strain
Taking breaks from your tech devices, such as your work computer may seem like an obvious prevention tip. However, it is actually startling how few breaks people actually take. Frequent breaks also do wonders for your overall physical and mental health, according to Stanford University researchers.
Giving your eyes a break from the intense gaze you have locked on your computer is essential. Blinking more often will also decrease the likelihood of your eye’s becoming strained. In fact, people working on a computer blink a third less than normal.
4. Make Your Work Area as Seamless as Possible for Your Eyes
Looking back and forth from your work computer and documents spread all over your desk is an eye strain problem. A very common scenario in offices everywhere, however, a simple solution exists.
By employing the help of a document stand, you can easily fight eye fatigue. Your document stand should be properly lit and aligned with your computer screen. This will keep your eyes from constantly making adjustments.
The numerous solutions you can use to prevent and/or sooth eye strain at work are easy to put into action. It simply takes a bit of discipline on your part, and you should always consult your optometrist if your eye strain continues to be a daily nuisance. Because, focusing on your eye health is an important part of your overall health and happiness.
It is never planned. You could be putting on makeup, gardening, or even just running errands on a windy day, but all of a sudden you have something in your eye and it hurts. What do you do?
Small Foreign Objects
First and foremost – DON’T RUB your eye!! This could scratch your cornea and make things much worse.
- Wash your hands thoroughly with soap and water.
- In a well-lighted area, look in a mirror to try and find the object in your eye.
- If you wear contacts, remove them before trying to remove the object or flushing your eye.
- Try blinking and letting your natural tearing flush out the object.
- If the object is on the colored part of the eye or under the upper lid you can try to flush it out gently with clean cool or lukewarm water in one of three ways:
- Completely fill an eyecup or small juice glass with water and put your open eye into the container to flush out the object. Do this standing over a sink as the water will overflow.
- Use a clean eyedropper and fill with water. Be careful to not touch the tip of the eyedropper to the eye.
- Turn your head so your eye is down and to the side, then hold your open eye under a faucet.
- If the object is in the corner or on the white part of the eye you can try flushing the eye using one of the methods listed above or a using wet cotton swab or twisted piece of tissue to lightly touch the foreign object. Make sure to not apply pressure to the eye.
- If it is under the lower lid you can use any of the methods above by gently pulling down on your lower lid to access the object, but be careful to not push the object further down.
- A scratchy feeling of slight discomfort may continue for a short time after removing a small object. I discomfort continues after 24-48 hours, your eye becomes red or your vision becomes blurred, immediately seek medical attention.
- Never use tweezers, toothpicks or other hard objects to remove an object as these could damage your eye.
Never try to remove a piece of metal, anything that has punctured your eye or an object that will not come out after flushing with water. Cover both eyes to help prevent eye movement and there is no pressure on the eyes. Have a friend drive you to eye doctor immediately.
Do not touch your eye, but IMMEDIATELY flush your eye with clean running water from a faucet.
- Flush your eye for a minimum of 15 minutes holding your eye open and at an angle so the runoff water does not run into the other eye. If both eyes are affected or the chemicals are on other parts of the face or body, you need to do the flushing in a shower.
- If you wear contact lenses, leave them in and start flushing immediately. If they do not fall out from the flushing process you can try to remove them. Then repeat the entire flushing process.
- Seek medical attention immediately upon completing the flushing process, regardless of how your eyes feel.
The best way to protect yourself from getting anything into your eyes is to protect them.
- Never use chemicals without wearing goggles that completely surround and protect the eyes.
- Wear specially designed goggles when swimming.
- Wear goggles when participating in sports where you could get hit with any flying object like a ball or bat. Also in any sport where you could get an opponent’s elbow or hand in your eye.
- Wear protective eyewear when using power tools or striking tools like hammers.
- When you are cycling, in dusty areas or it is windy, also protect your eyes with sunglasses or other protective eyewear.
Discovery Eye Foundation
You know to slather on lots of sunblock before going out in the sun, and to keep applying it throughout the day. What about your eyes? Do you always wear a brimmed hat and sunglasses? Even on cloudy days? Can your eyes get sunburned?
The short answer is yes, you can get sunburned eyes, and just like you skin, it could come back and haunt you in the future.
Severely sunburned eyes, known as photokeratitis, is a result of prolonged exposure to the sun’s ultraviolet rays and can cause a burning sensation and blurred vision. Realize that these damaging UV rays do not just come directly from the sun, but also from the reflection of these rays from water and sand.
Symptoms of sunburned eyes include:
- Eye pain
- A gritty feeling
- Burning sensation
- Red eyes
- Swollen eyes and/or lids
- Watery eyes
- Blurred vision
- Sensitivity to light
- Glare and halos around lights
These symptoms are temporary and should resolve on their own within 24 to 48 hours. If the symptoms last longer, see your eye doctor immediately.
While waiting for your eyes to recover you might want to:
- Stay indoors and wear sunglasses to help with your increased light sensitivity.
- Keep your eyes moist with preservative-free artificial tears.
- Use OTC pain relievers to help with the pain and follow the recommended dosage.
- DO NOT rub your eyes.
- If you wear contact lenses, remove them immediately and stop wearing them until your eyes have returned to normal.
- You may find that placing a cool, damp cloth over your closed eyes is soothing.
Just like with your skin, the UV rays do have a long-term effect on your eyes. Sunlight can cause a slow deterioration of the cells in your eyes that could lead to eye diseases such as age-related macular degeneration and cataracts. Therefore it is best to limit you exposure to both direct and reflected UV rays.
The best ways to protect your eyes include wearing sunglasses that block 100% of the UV rays and a hat. Not all sunglasses have UV protection, so make sure the ones you select do, and wear them whenever outdoors. Even on a cloudy day as UV rays penetrate clouds. For maximum protection consider wrap-around glasses to protect you from direct and indirect sunlight. If you are participating in sports, goggles or glasses designed for your specific sport might be the best option. And don’t forget to wear a brimmed hat. It will not only protect you from indirect sunlight, it will also protect your face from sunburn.
Discovery Eye Foundation
When you think of a vacation, you think of having fun, relaxing and trying new experiences. This is not so easy if your are visually impaired, especially if it is a new vacation location. It can become stressful, scary and a big ordeal, even if you have someone who is sighted going with you. What follows are a few tips and strategies for planning a vacation with vision loss. Hopefully they will help you enjoy your trip.
Susan DeRemer, CFRE
Discovery Eye Foundation