Books on tape have been my one bright spot and saving grace through 14 years of being ill and often bedridden with CFIDS/fibromyalgia. With all that this illness has taken away, it has been wonderful to find a way in which the illness can give something back to my life—that is, the opportunity to spend time with books while not expending any of my limited energy.
Books on tape have been a marvelous coping tool, which I have used in a variety of ways for different moods and different purposes. At times of anxiety and stress, they have helped me keep calm and distracted from my worries. By concentrating on a soothing, less stimulating book, I can focus my thoughts and drift more easily into sleep. When I’m driving or waiting for appointments, they entertain; when I’m feeling low, spiritual books uplift me and put things into perspective. When I need more stimulation and my concentration is poor, I choose books with an absorbing story and simpler language. I can avoid thinking about how tired I feel when I am doing minor daily chores, by listening while I work. At times, I can become so absorbed that I feel like I have been on an adventure, like the days I spent, in a sense, in the South Pacific, while listening to two of Herman Melville’s classics, Typee and Oomoo.
As often as I can, I choose a book that I can learn from, like a biography, travel book, literary classics, or historical novels. I have largely filled in numerous gaps in my education in this way. I make up for the fact that my memory and concentration are not great by listening to some of the more valuable books twice. On the whole, these books have kept me from feeling that my years of being ill were a total waste of my time. In a similar way, the programs on public radio stations have helped entertain and inform me with news, culture and books, since I don’t have the energy to read newspapers or magazines. In fact, I suspect that from the point of view of learning, I may look back on my years of illness as the most valuable years of my education.
Try the library first
For several years I borrowed the books on tape from the main library in Knoxville, where I lived. Some libraries have good collections and they will probably send your selections to a local branch where it is more convenient for you to pick them up. There are also a number of companies that rent them (for example, Books on Tape, 800/626-3333). They send them to you in the mail for a fee of $14.00 to $20.00 or more. These tapes can be played on any regular audio cassette player.
The best way I have found to obtain books on tape, however, is through services designed to help people with reading disabilities. You are eligible if your doctor signs a form to verify that you are too fatigued or disabled by illness to read.
The Braille Institute (800/808-2555) will loan you a special machine to play their four-track, slower playing tapes, but there may be a waiting list. Thousands of books are available and can be ordered through a catalog or by phone. The tapes are recorded by professionals who often do various voices, so sometimes it seems like a radio drama.
Educational books available
If you want educational books, the best source is Recording for the Blind and Dyslexic (800/221-4792). They require a fee of $50.00 to enroll, plus $25.00 per year, and do not loan you free tape machines. You can also buy a small, portable, rechargeable four-track tape player for $100–$200. (The Braille Institute machines will play these tapes, too.) One can vary the speed on all these machines, so if the reader talks too fast, you can slow him or her down considerably.
This service is really designed to allow the blind and dyslexic to get an education more easily, and they have extensive libraries for children and adolescents (available on-line at www.rfbd.org). Their volunteers will record anything one requests with a donation of two copies of the book. Perhaps CFIDS authors and support groups could collaborate to expand the availability of books on CFIDS. For me the service has been valuable for obtaining medical textbooks to help me research my illness. I believe some of these books will help me pursue a career after I am well.
I know books on tape may not be as important or enjoyable for everyone as they have been for me. I would suggest first trying some from the library or renting a few to see if they suit you, perhaps for even just an hour or two a day. But if you are like me, you may find that they allow you a respite from and even a sense of victory over your illness that is hard to find elsewhere.
Joyce Waterhouse has been living with CFIDS for 14 years. She resides in Pasadena, Calif.