CISRA’s Synergy Health Newsletter

Issue 2. Alternative Sources of Books on Tape (1998)

by J. C. Waterhouse, Ph.D. 

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 driving or waiting for appointments, they entertain, when 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 reading 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 fact, I suspect that from the point of view of learning, I may look back on them as the most valuable years of my education. In a similar way, the noncommercial programming 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 most areas you can find public radio stations on the 88-92 area of the FM dial. I even find I can tape public radio programs that are played in the middle of the night by setting the VCR to the Community Access T.V. station that plays the public radio station overnight. On the whole, I suspect that from the point of view of learning, I may look back on these years of illness as the most valuable years of my education.

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 them 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. They send them to you in the mail and rental fees range from about $14.00 to $20.00 or more (e.g. Books on Tape, Inc. 800/626-3333). These tapes can be played on any regular audio cassette player.

The best way that I have found to obtain books on tape, however, is through services designed to help people with reading disabilities. One is eligible if one is too fatigued or disabled by illness to read or for some who find their chemical sensitivities to ink are too severe, and can get a physician’s signature verifying this. The first service is from Braille Institute (800/272-4553, http://brailleinstitute.org). To apply, call and ask for the number of the Braille and Talking Book Library in your area and then request the form for the physician to sign. Then send in the completed form and request your first books (do this immediately because this puts you on the waiting list for tape machines). Unfortunately, there is one drawback at present, and that is the shortage of the special tape machines necessary for playing their 4-sided, slower playing tapes. One may have to wait 1-2 months before a machine is sent to you free in the mail (see below for how to purchase a small tape player). But once you have the machine, thousands of books are available to you. You can request various catalogs for book suggestions, or just have a reader advisor fill your order or help you choose over the phone. The tapes are recorded by professionals who often do various voices, so that sometimes it seems like a radio drama. Everything is free, including the postage.

If you really want to get seriously into educational books, the best source for tapes 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. But if you have the Braille Institute machines, they play their tapes too. You can also buy a small portable, rechargeable 4-sided tape player for $100-$200. One can vary the speed on all these machines, so if the reader talks too fast, you can slow him down considerably. Their readers are not professionals, but volunteers, but the choice of books is fantastic. The service is really designed to allow the blind and dyslexic to get an education more easily. They will tape anything one requests if one donates two copies of the book. For me the service has been valuable for obtaining medical textbooks to help me research my illness. I have also found philosophy and history books I was interested in, and have also listened to several on writing. I believe some of these books will help me in pursuing a career after I am well. They also have recently developed an online catalog that makes finding the books you want much easier (www.rfbd.org)

I know that books on tape may not be as important or enjoyable for everyone as they were for me. For one thing, for some people, and at some times, the books may be hard to keep one’s attention on, or they may make one sleepy. So 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.
 
Editorial Note (2006): For an update on my current views on what I believe is likely to be the most effective approach to chronic fatigue syndrome and fibromyalgia and many other fatiguing and painful chronic inflammatory diseases, see the transcript of a talk I gave before a Support Group in 2005. I give an overview of a new approach, called the Marshall Protocol (MP), that seems to treat the underlying CWD bacterial cause.

Written by synergyhn

November 30, 1998 at 4:48 am

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