ANOTHER VIEW: Seven tips for living with macular degeneration

Editor’s note: Mary Beth Twining, formerly of Buford, now lives in Durham, N.C. She originally wrote this for a  friend who was diagnosed with macular degeneration, which she also suffers from. Besides providing these tips for others with the malady, she keeps up his spirit, remembering Wendell Berry’s advice, “Be joyful, though you have considered all the facts.”—eeb.

By Mary Beth Twining

DURHAM, N.C.  |  Here are seven tips for living with macular degeneration.

  1. Twining

    Ask for help. This has been hard for me to learn, but it turns out most people really like to help. And if you can ask for help, you can do a lot more things. People have read me menus, street signs, labels on medicine bottles, prices in grocery stores, which carousel my baggage will be on, to name a few.  If you hate to ask a friend for a ride to take you somewhere, and if you feel it’s appropriate, you can try giving  your driver some money for gas (keep an envelope handy with five, ten, twenty dollar-bills).

  1. Keep a chair by a window and use daylight whenever possible. It’s better than any lamp I have for seeing print and sewing on buttons.
  2. Be outside as much as you can. It helps you feel not so sad. You can hear birds and neighbors, and feel the air on your skin. 
  3. Explore the large-print section of your public library. They are stocking more good books in larger print.  And you might easily search the library on the Internet.
  4. Mark items in your house with marking pen or colored tape. I have written “FRONT” by the front-burner controls on my stove, for example. 
  5. Computer tips: these seem daunting at first, but you do gradually learn – best to get a computer-savvy friend to help you get set up, and just learn one thing at a time:
  • Enlarge the print on your computer/laptop. There are several ways to do this, which is demonstrated on youtube. 
  • Learn how to use voice commands and to dictate your messages and emails. Yes, computers can do that. This can sometimes produce strange mistakes because of the technology misunderstanding your human voice. You can either painstakingly proofread and correct using a magnifying glass (or larger type)  or just let people figure out what you mean. People are getting pretty laid back and forgiving about typos and such.
  • Audiobooks. You can listen to them on almost any device, laptop, iPad, phone. You might also get a Kindle, where the type can be bigger. Again, ask for help. 
  • Learn to use podcasts. There are thousands of them. Here are a few of my favorites: A History of the World in 100 Objects; Story Corps; Poetry Unbound; Letters From An American; The Conversation (on BBC); The Science Of Happiness; Pandora (make your own music library); BBC Radio. I like BBC 4 and BBC World Service; and magazines and newspapers. Many can now be subscribed to digitally, where they are easier to read because you can enlarge your print. 
  1. Try doing nothing. It’s veryhard; I never even used to eat breakfast without reading something. I never have figured out how to meditate but maybe this is a sort of meditating. Try to eschew the guilty feeling of not being busy. You might even fall asleep in your chair. Good! 

My instructions for how to sleep sitting up: 1.Be old. 2.Sit in a chair.

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