“Ms. Free's goal in writing this book was to help the general public understand what it is like to deal with ME/CFS, a severe, common and often-overlooked chronic condition. She accomplishes her goal by sharing her personal journey in Section 1 and featuring vignettes from members of the ME/CFS community in Section 2. The book blends science, information, caring, wisdom and humour. As a fellow Canadian, I am very proud of Ms. Free's contribution to lighting up this hidden world. Everyone will find insight into ME/CFS through the tapestry of stories found in this important and informative book.”
~Margaret Parlor, President, National ME/FM Action Network (Canada)
"As we read about one thriving creative life after another, curtailed and shut down, one can only imagine what a comfort it will be to sufferers who have been discounted and ignored for years, to see their experience reflected over and over again in these pages. And it’s absolutely impossible not to feel horror and outrage at the inequities in funding for ME/CFS, with budgets that are minuscule compared to illnesses with far fewer sufferers. These personal accounts give visceral impact to the cruelty of this illness, which won’t allow its sufferers to push their limits to try to live their lives, without punishing them with debilitating crashes. For those who believe, as did Matthew Fairman that 'One only had to pull oneself together and rise above the obstacle,' the harsh reality is entirely counter-intuitive and must be devastating. It’s certainly devastating to read about it."
~Rhonda Hayter, Editor (U.S.)
"Valerie has been my close friend for 30 years. We met while court reporting for the government. We raised our children together, co-taught aerobics classes, and shared our busy lives. I shared the journey through her mysterious, baffling decline in health and well-being, and then the ultimate diagnosis. I was witness to the decades of suffering and unsuccessful treatments. I was in awe of her tenacity while writing this stellar book: No matter how grueling and demanding the process, she realized its significance, and now, so do I.
I was honoured when asked to proofread Lighting Up a Hidden World: CFS and ME. After having read the book, it became embedded in my mind that ME/CFS is so much more far-reaching than I realized, and help is sorely needed. The "How to Help" section surprised me because I did not realize there are so many opportunities to get involved. It reaches deeply into what the general public can do and is a practical guide for people with the illness as well as for their friends and family members. It contains an up-to-date list of resources and contacts to answer questions such as: Where can I find more information; how can I find good support; what professional organizations are out there; how do I become involved; and how do we increase funding for research?
I love this book! It is timely, important and comprehensive; and it definitely lights me up with hope and motivation.
~Valerie Larsen, Friend 30 years (AB, Canada)
“Valerie Free has managed the nearly impossible. She has brought together descriptions and patient stories that convey what the world has refused to believe – that ME/CFS is not only real, but it is a nightmare that rivals hell itself and continues to be dismissed as a trivial neurosis by educated physicians who should have moved beyond this twenty years ago.”
~David Bell MD, FAAP (U.S.)
Author of: A Doctor’s Guide to Chronic Fatigue Syndrome: Understanding, Treating and Living with CFIDS
“I was shocked to discover how little I knew about this devastating, widespread disease before I read Val’s story! Her story, and the others shared in this book, brought to light just how appallingly ignorant and dismissive most of us, and especially medical professionals, have been with respect to people with ME/CFS. “This book’s creative setup, blending poetry with science, is what first gained my attention. With Valerie’s encouragement, I started reading and discovered it told a story I wanted to learn more about: In 2012, during my third year of university, a healthy, vibrant, and active friend suddenly vanished. I was told by those closest to her that she had contracted CFS and could no longer participate in the things she was doing just weeks earlier. I had never even heard of CFS before, but I thought if this disease could take a young woman like her and confine her to a bed and a wheelchair, it must be truly awful. |
"When I first began my career as a Registered Massage Therapist (RMT), so little was known about ME/CFS and related illnesses, and so much of what we were told was misinformation. Most therapists shied away from treating affected individuals. I have found Valerie’s book to be a gripping narrative of her long and arduous journey with the condition. The scientific and political timelines are presented in a clear and concise manner. The personal stories lend a voice to those not often heard and too often marginalized. As a student, I would have found this work to be an invaluable resource to learn about ME/CFS; and as a therapist, I am grateful to have access to a comprehensive text that I can share with my colleagues and clients alike." “Valerie’s personal story, conveyed in the form of an engaging poem/song, along with the testimony of other ME/CFS patients and advocates, provides much-needed support and validation. It is a valuable information source for those of us who are struggling with this isolating, life-limiting illness within an indifferent medical establishment. I am encouraged by her call for meaningful change, delivered in a gentle but determined voice, infused with intelligence and hope. |
“Lighting up a Hidden World: CFS and ME is hybridized life writing that uses storytelling to blend illness narrative, a wealth of knowledge and resources about ME/CFS, with a call to action. Author Valerie Free generously shares her personal journey with a baffling illness that takes her into places of darkness and despair, including into a medical labyrinth that has yet to figure out how best to support people with ME/CFS. Free’s searingly honest and gently humourous memoir uses the insights of her personal journey, as understood through art and poetry, to speak powerfully to patients, practitioners and advocates.”
~Tara Hyland-Russell, PhD, Professor of English (Life Writing) and Vice-President Academic at St. Mary’s University (Calgary, AB, Canada)
“This book takes us on a flyover journey through the 30-year history of CFS and ME, with touchdowns along the way so readers can jump out and explore. It gathers resources that Val and her collaborators have spent years collecting, and it is full of life experiences. Lighting Up a Hidden World: CFS and ME is a “one-stop shop” for people new to this hidden world, as well as for those who have been here for a while. Every time I pick up this book, I come across something interesting that is either new to me or a rediscovery – either in Val’s story or in the amazing contributions from others.
By exposing and exploring the past and showing the possibility of a brighter future, Val’s fervent hope is that everyone, including the public and the illness community, can hold one focus – resolution for ME/CFS and other complex illnesses. It is my hope too.”
~Maureen MacQuarrie, Book collaborator, ME/CFS patient since 2001 (ON, Canada)
“Val’s book, Lighting Up a Hidden World: CFS and ME is very unique. Her poem, based on the song “My Favorite Things” from The Sound of Music is playful and yet the words to the poem are very serious and upsetting. Using this song makes her writing accessible so it’s not just a rant. A lot of books on ME/CFS are so serious that you can get sick of reading them because the subject is so depressing. Her book has not minced any words, but because of the format and some very cool illustrations, it was a little more playful. I was not expecting to like it as much as I did. I couldn’t put it down because I wanted to see what she had gleaned and how she presented it. I read it from cover to cover within a few days.
Val’s book is very accurate. She did her research. And I liked her mixture of formats – having the poem going throughout and then having the sidebar and footnotes explaining the context and meaning. Then there were the personal stories. It concludes with the appendices, which not everybody will want to read, but I read every word. With this book, Val Free has done a great job.”
Eleanor Stein MD FRCP(C), Psychiatrist in Private Practice and Assistant Clinical Professor, University of Calgary
“There is truth in this inspiring book, which shares the heroic stories of individuals with ME/CFS who have battled stigma, discrimination and persecution in their search for appropriate care. This moving account of what Valerie and others have done is a must read and ultimately provides hope for us all that the status quo can be transformed through social action.”
~Leonard A. Jason, PhD, Professor at DePaul University, Director of the Centre for Community Research, and author of Principles of Social Change, Oxford University Press (2013) (IL, U.S.)
