Living with Vision Loss and Blindness
Helpful information for people dealing with vision loss & blindness
Dear Web site reader,
After living with my vision loss for more than two decades, I find myself living my life positively and productively. I am well aware that the irony of me working at a school for blind children, is an amazing part of my story. I was fortunate to have all of the tools and information of how I was going to live my life, right at my fingertips! In order to get to where I am today, however, the healing took time and hard work. I am periodically introduced to someone who has just lost their sight, or has someone in their life whom they are worried about, because of a progressive vision loss. More frequently than not, I find that they simply do not know where to turn. Once the medical diagnosis is given, the sense of loss weaves itself into their life, and the people around them. There is SO much that you or they can do, but… you do need to have some assistance, and you need to know where to turn.
On this page I have accumulated just a few suggestions to hopefully help, and get you going in the search in your community. First, I have also asked a few very special friends to write some words of encouragement about their own experience of vision loss or blindness. I KNOW you will benefit from their insights.
There is no possible way we can give a complete and full list of centers, organizations or ‘help aides’ companies. Touching base with these contacts, however, may just lead you to the perfect fit in YOUR community. I would also suggest that it is important to remember that we ALL are individuals. One technique or type of assistance may work for one person, but not another. There certainly are ways in which living skills just seem to work better for someone who is visually impaired. It would be helpful for you, and your loved ones, to learn as much as possible about those techniques! There is nothing more exciting for the blind individual than when they learn how to continue their favorite leisure activity or professional skill, so as to be able to perform it… independently.
May you each learn and grow with the information below!
Very Sincerely, Joan
Blindness is not the same as death!
When at age 19 I was diagnosed with retinitis pigmentosis (RP) and would lose all of my sight in the next few years, I was quite excited. Why? Because, prior to then I had been told by those I trusted that I was mentally retarded. Blindness seemed like a much better deal so rather than go into depression, I began to plan my life around a totally new set of problems that I thought were not only manageable but quite challenging. I decided that I could now handle going to community college where prior to my vision diagnosis I was convinced I had no hope of ever achieving a college degree. I obtained my A.A. degree but with great difficulty. It was then that a college counselor told me about the State Department of Vocational Rehabilitation and suddenly help was available and success was a matter of time. I began digging up all the information I could find regarding assistance for the blind. Now, with an Associate of Arts Degree, Bachelor of Arts, Master of Arts, Master of Science, Master of Business Administration and a Doctor of Philosophy and 20 years of college teaching behind me I think I have mastered this blindness nuisance.
What may be holding you back from achieving your goals is lack of faith in your own ability. You do need to take risks. Do not assume that everyone you speak to about your goals will agree with you. Throughout my life, each time I had an idea for my future there was always someone saying “you can’t do that – your blind.” Such comments became fuel for my fire of desire to try it anyway. I have experienced very few failures because I carefully thought out my future plans prior to putting them into operation. Don’t let others prevent you from enjoying your life even though you are blind or losing your sight. If you like to read there are many sources of recorded books. If you like to garden continue to garden. So what if you put the plant in upside down. It won’t be long until you master the art of letting your mind and hands figure out what needs to be done. If you want an education, consider yourself the best judge of your own ability and enroll in a class and put all your energy into proving to yourself you can be a success. Our greatest barrier to life being full even though we are blind is our own inability to recognize the incredible skills and ingenuity we each have when experiencing a life changing situation.
If I had it all to do over again I probably would not chose to be blind but now that I have lived with it for many years it really is not as bad as many might think. Not only do I teach college but I build furniture, bird feeders, wishing wells and as of this writing a concrete podium to put in my backyard garden. Whatever it is you want to do – go ahead and do it. Don’t let yourself or others convince you that because you are blind you are helpless. You will make a few mistakes but so do those who are sighted.
Chuck Wall, Ph.D.
You all know how we sometimes get a “mental image” of certain things in life. Let me share one with you…….. Several years ago my friend, Gail, a fellow University of South Dakota graduate, phoned me from her home in Scottsdale and we planned her visit. She would come down to Tucson to stay for a few days and we would attend a fun Halloween event. A few days before she arrived, she phoned again to confirm it all and to ask if I would mind visiting another USD graduate who lives in Tucson; a blind author by the name of Joan Brock. I rather reluctantly said “OK” and even though Gail had provided me with the title of Joan’s book “More Than Meets The Eye” with the thought that I just might read it, I did nothing more to prepare for the meeting.
Now, in my mind’s eye, I pictured a little, gray haired lady sitting out on her back patio sipping tea with her white cane and perhaps a seeing-eye dog beside her. That was my preconceived idea of a “blind” person. So when we knocked on her door, it opened and this vivacious, tall, slim, gorgeous blond said “Hello, I’m Joan”, I must tell you that my chin dropped to the sidewalk. We entered and sat around Joan’s living room as she continued a lively conversation with Gail, Mary Ann (another USD grad) and me. Although, I must confess, for one of the few times in my life I was speechless (my chin was still on the floor, you see). Finally, Joan turned to me & asked me to tell her a bit about myself………which was difficult, because my chin….etc.
What I have come to know about Joan is that she is incredibly self sufficient. Since that first meeting, we have been to lunch on several occasions and after I pick her up, she gives me directions to the restaurant, always unerringly. My husband & I saw Joan speak to a group of insurance agents in Boca Raton, FL (as Bob describes “Not a dry eye in the house”). Once again, the first image one sees is of a very confident, tall, slim blond striding on stage, and then you hear her story.
I am eternally grateful to my friend, Gail, for introducing me to Joan. What I now have is a wonderful, lifelong friend whose company I enjoy so very much……… and oh, by the way, she just happens to be blind.
Following is a piece from another young woman whom I have recently met.
With the ongoing repeat of the Lifetime movie, the airing of the talk on Focus on the Family and people sharing the book with one another, I often receive notes and messages from those who might have heard or seen one of them. Lisa Shearin called me out of the blue, after seeing the movie. She had never done anything like this and was nervous. Upon hearing her story, her positive attitude and her sense of humor, I asked her to write a piece for this link. I know you will find my new friend as charming as I did, and I know you will again be amazed at the strength of the human spirit’s desire to go forward positively and productively!
Greetings from the easy chair. As I sit in my favorite chair with a wireless keyboard on my lap, I smile in wonder and amazement at just how far the Lord has brought me in just two years. I invite you to walk back in time with me to a beautiful Sunday afternoon in November of 2003. My husband Lee, and our three children, Jeffrey, 20, Allison 18, and Amanda 17, treated me to a wonderful surprise for my forty-third birthday. After attending church that morning, we headed to Raleigh to see the world famous Lipizzaner Stallions. Although I wasn’t feeling well, I enjoyed our time together. With Jeffrey and Allison in college, these family moments were few and far between. During the horse show, and on the forty-five minute ride home, my stomach began hurting and swelling. Upon returning home, I called the doctor and was instructed to meet him back in Raleigh at the hospital. By this time the pain and swelling were so intense, I knew I couldn’t make it back to Raleigh in such pain. I asked my husband to take me to the local hospital where I was given pain meds and loaded on an ambulance and rushed to Wake Medical Center. I was rushed into surgery where they found that my stomach had ruptured. After surgery I slipped into a coma and remained in that state until January 1, 2004. When I awoke, I realized that I was totally blind. Can you imagine going to sleep one day and waking up a month later, totally blind? It was truly an incredible life changing experience. Not only was I blind, but I also had a variety of health issues to contend with, the worst being severe pain that would remain with me for many months. My stay in the hospital lasted until February 17th.
Once at home, I realized that I had many choices to make. Was I going to throw up my hands, stay in bed, and give up on ever living a normal life, or was I going to roll up my shirt sleeves and fight for all I was worth to learn to live a productive, fulfilling, abundant, and independent life? I chose to fight. One of the first things I did in my fight to have a normal life, was to contact North Carolina Services for the Blind. Through this agency I gained entrance into the North Carolina Rehabilitation Center for the Blind. At the rehab center, I learned a myriad of skills and techniques to move me along in my adjustment to blindness. I was taught adaptive cooking, cleaning, craft, computer, Braille, orientation and mobility, and independent living skills.
Upon my graduation from the rehab center, I was offered a job as an independent living skills teacher for NC Services for the Blind. Since I had been a public school teacher at the time of my illness, this was the perfect job for me. I was thrilled to be teaching again! God had truly answered my prayers.
I have often been asked “isn’t being blind terrible?” I answer with a resounding “no”. I look at my blindness as just another great adventure on this journey we call life. Sure, I have my days when I get frustrated with the blindness, days when I would love to get behind the wheel of a car and drive, days when I long to once again see the faces of my loved ones and the beauty of the world God made, days when I want to run without falling or bumping into things, days when I want to hold my Bible and read and underline and write in the margins just like I use to, and days when it would be easier just to stay in bed. When I stop and look at all I have gained from losing my sight, it is all good. Being blind has enabled me to see things my eyes could never see. I now see people for who they are, without the physical trappings that cause us to evaluate a person. I have met the most wonderful people that, honestly, I might have ignored in the past because their appearance, material possessions, and skin color didn’t match mine. I realize now how much I have missed over the years because I only saw people with my eyes and not my heart.
I have also learned to develop my other senses. The world offers so much “more than meets the eye,” as Joan would say. It’s utterly amazing how much you can see with your hearing, smelling touching, and tasting.
Blindness doesn’t mean that we aren’t capable of doing the things we have always done; it just means we have to find new ways to do the things we love. There is an abundance of resources available but we must seek them out. We are not limited by our blindness, just by our attitudes and actions! Let me encourage you today, to roll up your sleeves and fight to live an abundant, fulfilling, and independent life. You can do it with faith, determination and perseverance. Yes, it will be difficult and you may shed many tears but your heart will rejoice when you reclaim your independence.
Many Blessings to you for a wonderful life,
The following is a letter from Nancy Shugart:
I lost my sight when I was eight years old. Doctors called it Retinitis Pigmentosa and Macular Degeneration at that time. However, today my ophthalmologist calls it a cone-rod dystrophy.
When I was eight my visual acuity went from a perfect 20/20 to 20/200 in just a couple of months.
Today there is no measurable acuity.
I have to say that, at that time, it seemed to bother everyone else a lot more than it really bothered me.
But as I grew into my teenage years I adopted everyone’s belief that blindness must be a terrible thing and so I became extremely angry about it.
I will say, though, that my parents are the greatest in the world. My dad died many years ago but my mother, now age 88, gave me a lot of strength.
To make a long story short, I finally got over my anger in my late teens and made up my mind to go after my life-long dream of becoming a teacher.
Since I had always gone to public school I wanted to teach in the public schools.
Of course, the experts all said that a blind person couldn’t teach in the public schools but I decided I would prove them wrong.
And so I did.
I earned my Bachelor of Music degree and later my Master’s degree in music and taught music at the elementary school level here in the Austin Independent School District.
I taught for 21 years before taking disability retirement three years ago.
The disability, however, wasn’t my blindness.
In 1992 I was given an even greater challenge to deal with and that is Type 1 diabetes.
I take five insulin injections a day and monitor my blood sugar about every two to three hours.
I couldn’t keep up with that regiment in my hectic teaching schedule so I feel so fortunate that I could get a good retirement.
I now focus on my speaking career. My passion is speaking at schools and teacher and parent conferences.
I received my beautiful guide dog, Luke, five years ago and he is such a blessing to me!
Anyway, I could go on but it’s getting very late.
I’ll sign off for now but hope we can keep in touch.
If you’re ever in Austin then I hope we will have an opportunity to meet!
You can get more information about Nancy Shugart on her website at www.provethemwrong.com
DO YOU WANT A WATCH OR TALKING CLOCK?
A really convenient and easy place that has talking clocks, is Radio Shack. All you need to do is have someone show you the buttons. I have several around the house. For Braille or talking watches and clocks you also can get information and catalogues from the Independent Living Aides Company out of New York. They are very helpful. Their Phone number is 1-800-537-2118 and they are online at http://www.independentliving.com You also may find some adapted equipment aides at your local Association for the Blind. Check your Yellow Pages!
ARE YOU WONDERING ABOUT NATIONAL ORGANIZATIONS? …
Most people are aware that the Lion’s service clubs assist in working with eye care and research. Their work is so valuable nationally, as well as internationally. Check out their web site to learn more…
The American Foundation for the blind is a wonderful national organization that can lead you to many answers. Visit their web site at http://www.afb.org
DO YOU WANT TO READ A BOOK? …
Library of Congress Talking Book Services
The Talking Book Topics is distributed free, to visually impaired and physically handicapped individuals who participate in the Library of Congress free reading program. It covers news of developments and activities of library services, And list recorded books and magazines available through a national network of cooperating libraries. These recorded, large print and Braille books are thousands of fiction and non-fiction titles including classics, biographies, gothic, mysteries, and how to, and self help guides.To learn more about the wide range of books in the collection, readers may order catalogues and subject bibliographies from cooperating libraries. They are on the web at http://www.loc.gov/nls/ The contact information for these services is …
Publications and Media Section
National Library Service for the Blind and Physically Handicapped
Library of Congress
Washington, D C 20542
Another source of free talking magazines and books is the American Printing House for the Blind. Their website is http://www.aph.org/ They are located in Kentucky and their contact information is 1-800-223-1839 The tape players for these cassettes are special recorders. You can either check out a free machine from a cooperating library, or you can purchase your own ‘walkman-like’ unit from several sources. Again, the Independent Living Aides company, or the American Printing House for the Blind can assist you in that purchase.
ARE YOU WANTING TO MEET WITH SOMEONE TO HELP YOU WITH YOUR DAILY LIFE SKILLS?
It often seems that when your vision is taken away, people feel that you are incapable of the simplest of tasks. From cooking a meal to walking down town and back, independently, Learning the technique is available for you! Your physical capabilities and realistic goals can all be met, but having help from those who are specialists in the field will open that door for you. Almost every community will have access to a state Association for the Blind. Try visiting them online at http://www.nfadb.org/ or looking in the Yellow Pages for that organization that can assign someone to work with you on your goals.
ARE YOU INTERESTED IN THE WORLD OF GUIDE DOGS? …
My friend Tom Sullivan is probably the best advocate for talking about guide dogs. Tom wrote a book with Ms. Betty White, with the title of “Leading Lady”. It is the story of his first dog Dina. It is a touching story that educates and fills you with love for the incredible gift that these animals give to the world of the visually impaired and blind. Do try to check out that book.Contact the National Guide Dog Foundation at http://www.guidedog.org
ARE YOU INTERESTED IN RESEARCH OF EYE DISEASES?…
For several years I was on the Board of the Ophthalmology Department at the University of Arizona. The Lions Eye center is one of the top research hospitals in the country and they have a medical staff of research scientists working on new and exciting findings every day. From Glaucoma research to Macular Degeneration, the specialists are making important strides in finding answers to eye diseases. To check out the latest of what is going on there at the research facility visit the department’s web site at www.eyes.arizona.edu
ARE YOU INTERESTED IN THE WORLD OF TALKING COMPUTERS?…
When I first returned to my home town in California, I was introduced to Dr. Wall at the local college. After reading his comments above, you can see how his enthusiasm for life is infectious! He asked me to assist in a class that was being offered at the college. It was a class in talking computers for the blind. There I began my limited capabilities of using a computer. It truly opened up a world that has taken me to places I never thought possible.
There are endless opportunities for you once you have learned the skills of using the programs and technology available. Try checking with your local association or college.
ARE YOU A STUDENT AND NEED A BOOK RECORDED? …
Recording for the Blind is located in the New Jersey area and they are an organization that does text books and educational materials. If there is a good that you need, and it is not recorded, they can do that for you! Visit them online at http://www.rfbdnj.org/ or give them a call at