Vision Loss: Strategies for Living with Hope and Independence

By Peggy R. Wolfe

Filled with compelling ideas and practical tips, the updated third edition of this book—formerly titled Macular Disease—broadens its scope to offer a positive, take-charge approach to living with declining sight, regardless of the cause. Featuring photos of special lighting and other aids and insight from the author's own personal experience with impaired vision, this oversized handbook is ideally formatted for readers with vision loss by employing the use of large print on glare-resistant paper. Offering reassurance, hope, and personal insight, this revised edition contains practical tips for performing daily tasks, descriptions of adaptive strategies, and an expanded section on high-tech assistive technologies. With strong endorsements from medical communities, the book includes an invaluable index and resource list for readers.

• Language: English
• Publisher: Park Publishing, Inc.
• Release date: Mar 1, 2014
• ISBN: 9780996261203

Book preview

form

Introduction

Hope and Independence Intertwined

VISION LOSS: Strategies for Living with Hope and Independence is the 3rd edition of the book formerly named Macular Disease: Practical Strategies for Living with Vision Loss. The new title reflects my expanded understanding of the world of vision loss. I’ve learned from the people I’ve met that, no matter the cause or extent of our vision loss, we want to live with hope and maintain maximum independence.

WE CAN DO IT is the message of this book. Vision loss need not deter us. Maintaining a hopeful outlook nurtures our natural resilience and inspires us to find ways to live with as much independence as we can safely handle. Hope and independence are intertwined partners—each reinforces the other. The key to preserving our independence, even in the face of the challenges presented by declining vision, is to cultivate our resilience and the ability to sustain a hopeful spirit.

This book is written for all affected by vision loss, including families and friends who can gain insight and an understanding of the challenges faced by their loved ones, and doctors and other clinicians who can learn how their patients must cope from day to day.

My expertise comes from having lived with vision loss from macular degeneration since 1999. I do not attempt to address medical aspects of vision loss; rather, the book is a personal guide to dealing with actual situations and challenges.

I’m again writing in real time as I continue to adjust to the progressive decline of my own vision. When diagnosed with macular degeneration at the relatively young age of sixty-nine, I wasn’t too surprised, as my mother and my uncle lived with macular disease for many years. They provided me with gutsy examples of how to live with vision loss.

Longtime exposure to their stalwart optimism left me with an accepting spirit—one filled not with fear, but with the will to do battle. At eighty-three, I’m still fighting my vision loss by finding strategies to make my life easier and by preparing for the day when I may have to rely solely on my peripheral vision.

Your life, after receiving a diagnosis of a vision disease, will likely take a different course than you expected. However, the information offered in this book demonstrates that the picture is not a hopeless one. You can still do the things you have been doing—though you may need to do them in different ways.

Those of us living with vision loss experience both trials and triumphs, and some of mine are illustrated here in the form of personal stories. Each chapter in this book also offers practical strategies for everyday life. You can use ideas in this book that have worked for others to find solutions that work for you.

Parents of a child with vision loss can gain insight and learn about vision rehabilitation and a variety of resources. I direct you especially to the National Association for Parents of Children with Visual Impairments (NAPVI). See description in Appendix B.

My goal in writing this book is to share what I have learned from my experience and from others in the same situation. By finding tactics to deal with the realities of declining vision and embarking on a strategic game plan—we need not be victims of our vision loss. We can be victors and have an independent and fulfilling life. There is hope, and there is help.

1

Nourish the Spirit

WHAT DO WE MEAN BY SPIRIT? People think of spirit in many different ways. One definition is life force. Helpful qualities within that concept include backbone, boldness, character, dauntlessness, energy, enterprise, enthusiasm, grit, guts, heart, humor, morale, motivation, resolve, soul, vitality, warmth, and will. Developing these inner resources will help you sustain a rewarding and independent life full of hope, courage, resilience, and purpose.

Develop positive attitudes and resilience

Consider the following qualities as gifts to help you develop the strong spirit that leads to a positive hopeful outlook: acceptance and patience, powerfulness, enthusiasm and enjoyment, and most important—gratitude. Think of how you can use these qualities to enhance your day-to-day life and develop resilience. I think of resilience as the ability to adjust to the changes and challenges we meet with vision loss by using our inner strength and outer resources.

Acceptance and patience

Realize that life involves change, and living with vision loss will include limitations you didn’t expect. You may need to allow yourself to grieve your losses as you move toward acceptance. Understand that you are dealing not only with the loss of vision, but also the loss of what you thought the rest of your life might be like. As with any other grief, you may feel shock or disbelief, or even find yourself in denial that this is happening to you. Anger, fear, and questions of Why me? are common reactions. Certain everyday things may take longer to accomplish. You will be able to meet such new challenges more effectively if you can nurture a sense of calm and patience.

MY STORY

Spillovers and Knockovers

As my vision declined, I found it more and more difficult to see the level of coffee in the cup as I was pouring. I had frequent spillovers, which made me frustrated, impatient, and mad at myself. I also knocked over my glass more often, spilling milk all over the table—and sometimes my chair and the floor.

I finally decided to allow myself one spillover or knockover per day. Now I’ve accepted that I will have these incidents. When I have a day with no such accident, I feel elated at having such a good day. When I do spill or knock something over, it’s fine with me, because that’s my expected allotment for the day. So I don’t feel angry or impatient with myself anymore. On the rare occasion that I have two accidents—I just assign one to the next day!

Powerfulness

Many things in life are, and always have been, beyond our control—from the forces of nature to the behavior of others. Being confronted with some new limitations does not mean you are suddenly less powerful. Know that you still have control over how you live your life. There are still many parts of life that you can control. The most important thing you have a choice about is your attitude. When you are discouraged, counter that feeling with a determination to rule your own life. Since diseases affecting vision often have a slow progression, you may well have years of quite functional, albeit declining, vision. Consider such a diagnosis an advance notice—a gift of time to gradually prepare for the day that could come when you might have to rely only on limited peripheral or central vision. This book serves as a guide to things you can do in various areas of your life to bolster your confidence, sense of power, and ability to maintain your independence.

Enthusiasm and enjoyment

Be good to yourself, and do what is most important to you. At first, most people who receive a diagnosis of a vision disease feel confused, frightened, and depressed. I suggest that the first thing to do in that uncertain time is to figure out what things in your life bring you the most contentment and joy. Then immediately make plans to do one of these things as a special treat to yourself. Choose something that fills your heart with great joy. Practical activities required for daily living don’t qualify. What you pick need not involve a financial expenditure, but rather the investment and the reward of love and time well spent. Take a walk with a friend in a beautiful park, or visit someone you haven’t seen in a long time. Enjoy a museum, or go to a concert, or play with a friend.

You can save most of your ideas for later times, but this first one should be something really special. Then make a decision to find ways to be good to yourself on a continuing basis. Find ways to relax and have fun. If you want to meet people and learn new things, check out activities offered in your local area, such as community and senior centers—sign up for their newsletters and monthly calendars. Local low vision agencies offer classes and group excursions.

Maybe your idea of fun and relaxation is simply a slower pace to your life, so you can savor each day. Keep in touch with friends and relatives, play games on the Internet. Most important, be good to yourself.

Gratitude

Perhaps the most important quality of all is gratitude. Think of things in your life for which you are thankful.

I am thankful for—

living for seventy years before the diagnosis of early macular disease.

the gift of time to find ways to remain as independent as possible.

willingness to ask for help when needed (still hard for me).

family and friends who graciously help with tasks and transportation.

injections in my right good eye that stopped bleeding.

continued research into the treatments and cures for eye diseases.

the inspiring people I’ve met in my local chapter of the Foundation Fighting Blindness.

Coping with grief and stress from loss of vision

Emotional reactions upon diagnosis may include a profound sadness. Many people have trouble dealing with anxiety about the future. These are normal and understandable emotions, and allowing yourself to feel them can help you to accept what is happening and then let go of your fears. If vision loss—which perhaps comes on top of other losses—causes you significant depression, it may help you, as it has helped many others, to seek counseling or join a vision loss support group. Be patient and gentle with yourself as you strive for acceptance every new day—it will bring both peace and the will to move forward to your new normal life.

Stress is a common reaction to vision loss. Taking twice as long to perform a simple task or beginning to acknowledge that you should stop driving are typical stressors. The body frequently expresses stress in the form of headaches, stomachaches, or trouble sleeping. When you feel particularly harried or frustrated or sad, try these stress-reducing methods:

Take a break.

Talk about it. If you are alone, call a family member or friend. The important thing is to talk about it.

Tell someone if you are overwhelmed or need help, rather than wonder why others can’t or don’t see that you need help.

Recognize that a grief expressed is a grief diminished.

Know that it’s okay to yell or cry.

Realize that stress is contagious—if you feel stressed, chances are good that those around you will begin to feel stressed. Trying to ignore, deny, or bottle up feelings can result in a group of inwardly seething, frustrated people.

Help someone else.

The best way to prevent stress from building up is, of course, to prevent it from taking hold in the first place. Here are some ways to ward off stress.

Know your limits. Set realistic goals when planning your day.

Be patient and accepting of yourself.

Take frequent breaks by stretching and deep breathing.

Refuse to hold grudges or feel sorry for yourself.

Get enough sleep.

Exercise regularly.

Meditate or engage regularly in spiritual practices consistent with