Books can provide a lot of things to readers: comfort, information, inspiration, and just plain pleasure! Cognitive dysfunction (aka brain fog) makes reading difficult or impossible for some with ME/CFS, fibromyalgia, and tick-borne infections like Lyme disease, but there are some ways around that. Whether you have given up reading due to these difficulties or can still enjoy reading, there are many ways that books can bring joy into your life.
I have been an avid reader since the days of Dr. Seuss and Nancy Drew. When I got ME/CFS 15 years ago, books became a huge comfort to me, a way to escape the constant struggles in my daily life. They were one of the few joys left for me during my darkest years.
I realized that despite all of the restrictions in my life, I could still read (and I was grateful for that, knowing some can’t). I built on that love of reading with book groups, a blog about books, and online interactions with other readers. All of that is now a big part of my life and something that brings me tremendous joy.
Here are some ways that books can bring you joy and enrich your life, too:
Try Audio Books
Many people with chronic illness who can no longer read on their own find that they can still enjoy audio books. With eyes closed and reclining comfortably, you may be able to better take in information by listening rather than trying to translate written words on a page with symptoms of cognitive dysfunction. You can also enjoy audio books with a friend, partner, or family member.
Though there are still some audio books on CDs, most are now digital downloads. Simply download a book onto your iPod, phone, or other device and start listening. Try downloading audio books from sources like Audible.com, Audiobooks.com, and Audiobookstore.com. With these services, you either purchase a monthly subscription or buy individual audio books, and many of them offer your first download(s) for free. For more free audio books, check out your library (most still offer audios on CD as well as digital downloads) or websites like Loyalbooks.com, and Librivox.org. Audiobooksync.com offers two free audiobooks each week throughout the summer every year.
Here are some outstanding audio books you might enjoy:
Lillian Boxfish Takes a Walk by Katharine Rooney – Based on a real-life woman, this novel takes place on New Year’s Eve 1984, as 85-year old Lillian walks all over Manhattan and remembers her long life there.
Celine by Peter Heller – An intriguing mystery starring 69-year old Celine, a PI specializing in reuniting families, who carries her own family secrets.
Anne Frank Remembered: The Story of the Woman Who Helped to Hide the Frank Family by Miep Gies with Alison Leslie Gold – The narrator makes you feel as if you are hearing this riveting story first-hand in this moving memoir.
Rebecca by Daphne Du Maurier – This classic Gothic novel is wonderful on audio, with the narrator bringing out the creepy, mysterious vibe that makes this story so compelling. This was one of my free audio downloads from SYNC (as was Anne Frank Remembered).
Try Young Adult or Middle-Grade Books
If cognitive dysfunction prevents you from following complex narratives, then consider books written for teens/young adults (YA) or middle-grade (MG) readers. These books are often easier to follow and shorter, but many of them are just as engaging. Some to try (all of these are excellent on audio):
Unbecoming by Jenny Downham – YA novel with incredible emotional depth, as three generations of women (a teen girl, her mother, and her grandmother who has dementia) struggle with their identities and their relationships with each other.
Pax by Sara Pennypacker – MG novel about a fox raised by a boy and how he struggles to find his friend when they are separated. Warm with plenty of suspense and adventure.
The Big Dark by Rodman Philbrick – MG novel for those who enjoy post-apocalyptic fiction. A massive power outage affects the entire world as a young boy in New Hampshire copes with his community’s fear and anger and tries to save his mother.
The Deadly Sister by Eliot Schrefer – For mystery and thriller fans, this YA novel is fast-paced with plenty of surprise twists and also looks at what it means to be family.
Chasing Lincoln’s Killer by James L. Swanson – If you prefer nonfiction, there are often MG or YA versions of popular adult nonfiction titles, like this YA version of Swanson’s best-selling Manhunt: The 12-Day Chase for Lincoln’s Killer. Shorter and simpler than the adult book, it is still a compelling, fascinating story.
Read for Inspiration
Books can also be a great source of inspiration, especially when you are struggling with the realities of chronic illness. Here are some wonderful books to turn to for inspiration, in either print or on audio:
The Anatomy of Hope: How People Prevail in the Face of Illness by Dr. Jerome Groopman – This book helped me immensely in the early days of my illness. I also gave it to my father when he was diagnosed with cancer.
How To Live Well with Chronic Pain and Illness: A Mindful Guide by Toni Bernhard – Toni, who has ME/CFS, has written three wonderful and inspirational books that apply Buddhist principles to life with chronic illness. This mix of personal experience and common-sense advice is wonderfully supportive and helpful.
Always Looking Up: The Adventures of an Incurable Optimist by Michael J. Fox – I loved this uplifting memoir about Fox’s life with Parkinson’s disease, as well as life in general: marriage, kids, loss, and more. The audio is read by the author and made me both laugh out loud and tear up. His first memoir, Lucky Man, about his diagnosis and early years with Parkinson’s, is also excellent.
The Sound of a Wild Snail Eating by Elisabeth Tova Bailey – a memoir written by a woman bedridden with severe ME/CFS, this slim book describes her daily life and the life of a small snail in a potted plant by her bedside. Sounds a bit strange but it is beautifully written, fascinating, and inspiring.
Join a Book Group, in Person or Online
About five years into my illness, I joined my neighborhood book group. I wasn’t sure I had the stamina for it, but I loved to read and was desperate for some social interaction. I later joined another book group at a local Unitarian church. I still belong to both of those groups, and the experience has enriched my life. I have enjoyed books that I never would have chosen on my own. I also love being able to discuss a book after I read it.
If you can’t manage an in-person book club, try one online. I started my own online family book group a few years ago, with my far-flung cousins and aunts. We use a Facebook group and take turns choosing the next book. It can be challenging to keep discussion going online, but it can work with a little effort. I also belong to an ME/CFS Book Club on Facebook that is very low-key – you read the books you are able to and take part in discussions when you can.
To find a local book group, check with friends, family, neighbors, and your local libraries, bookstores, and churches. If you can’t find one, start your own! Online: try searching for ‘online book group’ (or club) and ask friends and family, as well as people with your illness that you interact with online. I have seen some book discussions within chronic illness discussion forums, as well as on Facebook and Twitter.
Use Books to Connect with Others
You don’t have to belong to a book group to connect with other people through books. Visit book blogs online and leave comments. Post on Facebook “What Are You Reading?” to engage your friends and family in discussions about books. Join Goodreads or Litsy to see what others are reading. On Twitter, use the hashtag #FridayReads to post what you are reading.
In real life, ask your friends and family what they are reading and tell them about books you’ve enjoyed. Books provide a way to connect with and relate to healthy people. Read aloud to a child in your life (even if they are old enough to read on their own) to get closer and build happy memories together – or ask them to read to you!
With all the limitations in a life of chronic illness, you can still find joy in books and in talking to others about what they are reading. If you are unable to read the books you used to enjoy, try audio books and/or books written for a younger audience. Use your love of reading to connect with others, and your life will be enriched by the books themselves and the relationships you build and strengthen.
Suzan Jackson, a frequent ProHealth contributor, is a freelance writer who has had ME/CFS for 15 years and also has Lyme disease. Both of her sons also got ME/CFS 13 years ago, but one is now fully recovered after 10 years of illness and the other is in college, still with ME/CFS plus three tick-borne infections. She writes two blogs: Living with ME/CFS at http://livewithcfs.blogspot.com and Book By Book at http://bookbybook.blogspot.com. You can follow her on Twitter at @livewithmecfs.