Editor’s note: “Need to Know” is a series inspired by common forum questions and comments from readers. Have a comment or question about MS? Visit our forum.
This week’s question, inspired by the forum topic “Books…” of May 4, 2018:
What are some good books that focus on MS?
Whether you’re someone with a brand-new MS diagnosis or a veteran, it’s likely you’ve sought out reading to learn more about this complex and challenging disorder.
In the original post cited above (thanks, Jacqueline!), Trevis L. Gleason’s 2015 “Chef Interrupted: Discovering Life’s Second Course in Ireland with Multiple Sclerosis” came highly recommended.
As a voracious reader and a resident in greater Seattle, where the publisher is located, I chide myself for not having already read this book (it is, however, on my “to read” list).
What I do know is this: “Chef Interrupted” is a highly rated and award-winning book. Also, I know through the local grapevine that the author’s speaking engagement at Seattle’s Swedish MS Center was widely attended and the reviews there were very favorable.
Also worth noting: In 2012, celebrity physician Dr. Mehmet Oz designated Gleason as the “#1 Social HealthMaker on Multiple Sclerosis” for his Life with MS blog and other social media efforts.
Gleason’s book keeps company with a solid list of others worth reading on the topic of MS. Because there are so many great titles out there, I’m limiting this list to 10 personal accounts that I have either read or know to be inspiring, powerful reads.
10 personal memories of living with MS
“Chasing Hope: A Patient’s Deep Dive into Stem Cells, Faith, and the Future,“ by Richard Cohen
You may recognize the author as the spouse of television journalist Meredith Vieira. His experience with living with MS for over four decades — including blindness and paralysis — led him to report on cutting-edge stem cell research that gives many people hope for relief from MS.
“Tackling Multiple Sclerosis: The Frank Hickson Story,” by William F. Hickson III
This book is not only a memoir about living with multiple sclerosis, but a devoted family history surrounding the life of a young man with professional football dreams who changed course, post-diagnosis, to become a celebrated football coach.
“Love Sick,” by Cory Martin
Want a humorous story about life with MS? This memoir features a young woman who had a budding career as a Hollywood writer until she was given an MS diagnosis. Martin shares her pursuit for true love by chronicling her dating adventures as a person with MS. Ten percent of the book’s proceeds go to support the National Multiple Sclerosis Society.
“Broken Mary,” by Kevin Matthews
Those with ties to Chicago likely know this man from his days as a radio host for “The Loop,” where he served as radio comic and sports commentator. Matthews, a former stand-up comedian, wrote this confessional after discovering a broken statue of the Virgin Mary near a dumpster.
“Misdiagnosed: One Woman’s Tour of — And Escape From — Healthcareland,” by Jody Berger
For many, it can take years of jumping through hoops, dealing with judgmental family members and healthcare providers, facing questionable test results, and enduring insurance vagaries before achieving an actual diagnosis. This book is for anyone who’s been part of that diagnostic circus.
“Simply Amor: A Mother’s Miracle — Living with Multiple Sclerosis,” by Irma Resendez
Resendez is the CEO and founder of Familia Unida, established 20 years ago in the greater Los Angeles area. The organization serves over 15,000 individuals and families living with MS and its related disabilities. This book records her personal story of diagnosis at age 28 with two toddlers in hand and the news she would probably never walk again.
“A Final Arc of Sky: A Memoir of Critical Care,” by Jennifer Culkin
This inspiring memoir by a former emergency life flight nurse is a sweeping review of the author’s life. As such, it isn’t focused only on multiple sclerosis, but on many key aspects of her life. Perhaps the greatest value of this book is not the story of Culkin’s MS diagnosis itself, but rather how she manages to live her challenging life in spite of it.
“My Story: A Photographic Essay on Life with Multiple Sclerosis,“ by Amelia Davis
This one should just be sold with a box of tissues. It’s a gorgeous book combining beautiful black-and-white images with personal essays from the author and commentaries from her family and friends. This one belongs in the “You Are Not Alone” category of inspirational reading.
“People with MS with the Courage to Give,” by Jackie Waldman, et al.
Waldman has collected 24 first-person accounts from men and women living with MS, including a physician, a corporate senior vice president, a community garden activist, and even the story of David Lander (better known as “Squiggy” in the ’70s sitcom, “Laverne and Shirley”). Great reading for commuters and short attention spans.
“Dirty Details: The Days and Nights of a Well Spouse,” by Marion Deutsche Cohen
While this is an older title, Cohen dares to tell a baldly honest narrative about living with MS from the angle of the caregiver. This is not a comfortable read, but it is considered an important book, given the number of reading lists that archive it as a key resource for MS caregivers who are also family members.
Do you have a favorite MS memoir? Post your replies on this piece’s comment section or at the original “Books...” forum entry.
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