INDEPENDENCE

As America celebrates its 243th birthday, I find myself thinking about what it means to be independent.  Because I was born blind, I was told early on that I would quite likely spend my life as a dependent person. I suppose it’s fair to say that I’ve proved I can be independent, and for that, I am very grateful.

I came to learn about the world as a blind person, and so I never thought very much about what I was missing without having the ability to see. In my role as the Ambassador of Vision for the Discovery Eye Foundation, I spend a lot of time talking to people who are losing or have lost their sight later in life. I am amazed to learn how truly dependent they are as they work to rehabilitate their lives after the loss of vision. They tell me that even the smallest tasks in daily life become major obstacles.

A woman recently told me, “there is a constant fear of falling, even in a familiar place like my own house.  I am just not sure of where the steps are.  I hate to have to ask people to put my clothes together in the right color combinations and learn to cook and be comfortable in my own kitchen.  It feels impossible to get anything done.”

The most touching thing I ever heard was when a loving grandfather told me that he was having trouble remembering what his grandchildren’s faces looked like.

Let me hasten to say that many people who lose their vision do make extraordinary adjustments, but for all of them, the road back to independence is difficult, arduous, and sometimes impossible. At the Discovery Eye Foundation, we remain committed to funding the research that will hopefully preserve vision and provide the independence that all of us wish for and deserve.

 

Tom Sullivan
DEF’s Ambassador of Vision

sullivanvision.com

Too Much Screen Time:  Is it bad for kids?

Children and their phones, iPads and gaming devices are inseparable today. Most are growing up with a wide selection of electronic devices at their fingertips. They can’t imagine a world without the internet, smartphones and tablets.  Although, all that reading and playing games on their handheld devices may be harmful.  But it’s not just kids who are getting too much screen time. Many parents struggle with over use of screen time themselves.  So it’s important to understand how too much screen time could be harming everyone in the family.

Children can experience at least one of the following symptoms after being exposed to more than two hours of screen time per day:

  • Headaches
  • Neck/shoulder pain
  • Eye strain, dry or irritated eyes
  • Reduced attention span
  • Poor behavior
  • Irritability

Any of these symptoms could potentially affect academic performance and social interactions.

The worldwide rapid rise of nearsightedness has been linked to increased use of and exposure to electronic devices. However, spending more time outdoors, especially in early childhood, can decrease the progression of nearsightedness.

Blue Light can be harmful

The LED screens of computers and portable digital devices emit a broad spectrum of visible light. Most of these light rays are harmless, but a portion of the light emitted by these screens is relatively high-energy visible light called “blue light.”

Blue light has shorter wavelengths and higher energy than other visible light rays. Some laboratory research suggests certain bands of blue light may be harmful to the light-sensitive retina of the eye over time.

Blue light also plays an important role in regulating our body’s circadian rhythm. This basically is an internal clock that’s running in our brain and cycles between alertness and sleepiness at regular intervals over a 24-hour period.

Too much exposure to blue light at the wrong time of day can disrupt a person’s normal sleep/wake cycle, which can have serious health consequences.  Sleep disruption can be especially problematic for children, leading to daytime drowsiness and poor performance in school. Some authorities feel that disruption of the sleep/wake cycle also can eventually lead to weight gain and obesity-related health problems.

Research has shown that people who experience disrupted 24-hour cycles of sleep and activity also are more likely to have mood disorders, lower levels of happiness and greater feelings of loneliness.

How to cut back on screen time

  • Set a limit on daily screen time. Make it clear to your kids and stick to it.
  • Encourage your child to spend some of that screen-free time outdoors while it is still light.
  • Establish screen-free zones: For example, no smartphone use for anyone in the family in the car,  at restaurants, or at the dinner table.
  • No screens in the bedroom when it is time for bed. No exceptions.
  • As parents you can be a model for moderate screen use. Show your children, with your own behavior, how to live a rich, varied and healthy life where all habits are practiced in moderation.

It is also very important to teach your child good eye habits, below are few tips from experts:

  • You can set a kitchen timer or a smart device timer to remind them.
  • Alternate reading an e-book with a real book and encourage kids to look up and out the window every two chapters.
  • After completing a level in a video game, look out the window for 20 seconds.
  • Pre-mark books with a paperclip every few chapters to remind your child to look up. On an e-book, use the “bookmark” function for the same effect.
  • Avoid using a computer outside or in brightly lit areas, as the glare on the screen can create eye strain.
  • Adjust the brightness and contrast of your computer screen so that it feels comfortable to you.
  • Use good posture when using a computer and when reading.
  • Encourage your child to hold digital media farther away, 18 to 24 inches is ideal.
  • Create a distraction that causes your child to look up every now and then.
  • Remind them to blink when watching a screen.

Finally, it is very important to make sure your child gets a regular eye exam by a pediatric ophthalmologist or optometrist.  This will help monitor your child’s vision and eye health.

I Can Only Imagine

I can only imagine my wife’s beautiful face.  Oh sure, I’ve touched it and kissed it many times.  I’ve felt the lines with the tips of my fingers, tracing our lives together, and I’ve heard her smile.  I understand that’s not really seeing it.  It’s not seeing her eyes as they sparkle with something funny I said; or, when she looks at me with love reserved only for those who are truly in love.

She’s often tried to explain the flash and colors of a sunset and the cotton softness of clouds as they drift across the sky.  And, what about a rainbow made up of all the colors that somehow promise all of us that things in the world will get better. 

How amazing it would be to see my daughter Blythe skiing her favorite Colorado Mountain trail or my son Tom riding a California wave, both so secure and happy enjoying the sports they love. 

There is so much more I wish I could see, but it’s not going to happen because I am blind.  I am left with only imagining what it’s like to have the gift of sight.

I can only empathize with how a person feels when their vision is threatened by glaucoma or diabetic retinopathy, retinitis pigmentosa, and the most devastating of all, macular degeneration.

At the Discovery Eye Foundation (DEF) our researchers are working every day to overcome the loss of vision and preserve your ability to treasure all the beauty that surrounds you.  I’ve heard it said that the eyes are the windows to the soul.  I don’t know if that’s true, but I am sure that they are the single most important sense in the group of five, and that saving vision is a cause that must be supported.

DEF is committed to that mission, and with your help, answers to all forms of eye disease will be discovered.  It’s up to all of us to support the research that’s bringing us ever closer to those solutions.

If you want to help, please click the button below or download donation form to donate by mail, click here: DEF donation form

DonateNow 

 

 

Tom Sullivan
DEF’s Ambassador of Vision
sullivanvision.com

The Human Drama

All of us are players in the human drama, and there are moments when we get to observe it up close and very personal. I was in Chicago, preparing to speak in an ophthalmology practice. As I often do, I arrived early to sit in the waiting area and work to get a feel for the energy and style of the practice. I didn’t mean to overhear their conversation, but as I listened, I was deeply touched by their love and in that moment, their fear.

I learned that Charlie was 88 and Rose was 86. I am sure they were holding hands as Rose was saying “Oh, Charlie, I am so sorry about the falls I have had. I just can’t see the step from the kitchen into the family room.”

Charlie tried to comfort her. “It’s alright Dear, the Doctor will give us the answers, and I am sure you’ll be better.”

I didn’t speak to Charlie over the next 40 minutes believing that I would be intruding but sure that he was living every second of the exam going on just a few steps away.

When Rose exited the Doctor’s office, she was supported by the Doctor and a Tech who must have been holding her up because she collapsed into her husband’s arms.

“I’m sorry,” she kept saying.  “I am sorry Charlie. It’s Macular Degeneration.  And, the Doctor says there’s very little he can do for me.”

I could hear Charlie rubbing his wife’s shoulders and telling her that everything would be alright. But, Rose kept saying “I know we’ll have to sell the house and move into something smaller, and I am going to be blind Charlie. Blind.”

Moments like this are happening across the country in ophthalmology and optometry practices every day. 30% of adults, age 60 and older, suffer from this horrible disease, and only through research will answers be found.

The Discovery Eye Foundation is committed to finding those difficult answers and making it possible for people like Rose to see the faces of loved ones for many years to come.

 

Tom Sullivan
DEF’s Ambassador of Vision
sullivanvision.com

 

A New Commitment to Vision

Meet Tom Sullivan – DEF’s Ambassador of Vision

Over the last 40 years, I’ve been committed to working on behalf of blind children and their families.  My involvement has spanned the entire gamut of participation – from direct involvement in the classroom and counseling parents to hosting organized 10K races and celebrity golf tournaments that carried my name.  In that time, my wife and I raised just over $8 million thanks to the generosity of so many people.  Though my commitment to this cause has not changed, I’ve chosen to take on a new challenge that has in every way re-energized my passion. 

I’ve recently become the Ambassador of Vision for the Discovery Eye Foundation (DEF), a remarkable organization that funds cutting edge research that I believe someday will eliminate many forms of blindness.  The principle reason for my enthusiastic commitment is largely due to the fact that DEF directly funds researchers and avoids institutional restrictions.

As of this blog, DEF is engaged in ongoing efforts to understand 5 main eye diseases – Retinitis Pigmentosa, Macular Degeneration, Keratoconus, Diabetic Retinopathy, and Glaucoma.  I can honestly tell you that breakthroughs are not only on the horizon, but in many cases they are imminent.  Over the weeks and months I’ll be telling you much more, specifically about our individual research projects.  

Any help you may choose to give on behalf of people struggling with vision loss will be deeply appreciated. I look forward to having many of you join my fight for sight. Your help can make a difference! Click here to donate.

 

Tom Sullivan
DEF’s Ambassador of Vision
sullivanvision.com

 

 

A Second Vision

Kristin McDonald

For the last few years Kristin McDonald, a former actress and television spokeswoman, has been applying her make-up without the aid of her eyes due to retinitis pigmentosa, a condition that reduces a person’s peripheral vision until all that is left is a pinpoint of sight.

Today, she is in a first stage study that is offering her and others hope that the injection of stem cells might be the mechanism that could slow, and maybe even halt the effects of this horrible disease. Discovery Eye Foundation helped support many of the preliminary translational studies necessary to bring the clinical trial to the FDA and get this exciting, novel approach to the patients.

I am Tom Sullivan, Ambassador of Vision for the Discovery Eye Foundation, and I was rocked when my phone rang recently and I heard the sound of my friend Kristin crying.

“What’s the matter?” I asked with real concern.

Her tears were quickly replaced by laughter, joyous laughter.

“It might be working,” she said, “I mean, the cells just might be having an impact.”

“Meaning your feeling change in your vision?” I asked. 

“Tom,” she went on, “you won’t believe it. This morning when I was getting dressed and putting on my make-up, I saw my mascara in the mirror. Listen, I am not trying to tell you I can see, but since the cells were injected, I can focus on a light and even begin to notice shadows.”

“And, now,” she laughed again, “maybe I can put my mascara on straight!”

Kristin has no illusions about how far the injection of cells will take her; but, she is encouraged, as are many of the other patients who are part of Dr. Henry Klassen’s clinical study helped by DEF’s early stage funding.  Maybe the old phrase really does apply – you probably know the one I mean – “hope springs eternal in the human breast.” That goes for the researchers, the patients, and all of us who treasure the gift of sight.

To read more about Kristin McDonald, visit her website at secondvision.net

 

Tom Sullivan
DEF’s Ambassador of Vision
sullivanvision.com

Walk In My Shoes

Walk In My ShoesDiscovery 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.