BOOK REVIEW :
We're Not in Kansas Anymore:
CFS & the Politics of Disease
by Rik Carlson,
Source: CF-Alliance Newsletter, Summer 2005 Issue, ©Copyright 2005
Rik Carlson created We're Not in Kansas Anymore over the course of a lifetime and we are honored to be guests on his literary ride. His thought provoking combination of personal Chronic Fatigue Syndrome (CFS) experiences and his candid look into the NIH and CDC's history with legitimizing CFS
as a genuine illness as well as CFS funding and research is a wake-up call to all CFS sufferers.
"The CDC could not be budged from its harsh misunderstanding of CFIDS. For years on end they stalled on projects, only
dabbled at others, and were reticent to acknowledge this new disease."
Carlson paints the CFS experience with words that revel in humor and candor. He even includes eight pages of photographs from his life, which seals the connection between reader and author.
In addition to this `must read' book, Rik Carlson is a CFS support group leader in Vermont.
"This is amazing!"
(Overheard from someone reading the book in a waiting room. 7/25/05)
"I have been meaning to tell you a thousand times that, although you don't know it, you have been helping me through difficult days on many occasions. It is through your book, which I pick up and read when I need "understanding, validation," etc., that I have been able to "pick myself up and go again." You did an excellent job with it and I often quote from it to (my husband). Thanks for making the effort to educate the masses! Now, if we could only get the skeptics to read it.....
Who knows...I think it will make a difference."
"I read the first two chapters of your book on Tuesday pm. One of the strangest experiences I've ever had. I think because your biography touches me on several levels. I know the characters, the geography and the times. It really moved me. I also think it is extremely well written. I didn't know if it read so well because of my familiarity with the subject matter or what so I photocopied the first chapter and Fax'd it to my oldest daughter, Karolyn, because she is very bright and an excellent writer. She confirmed...you've got talent.
It also reads a lot like "On the Road" by Jack Kerouac...not as far out, but with that irreverent tone.
I'm going to make all my kids read it so you will be famous in the Rancourt family!"
Timothy Rancourt RPh.
"(Your book) was an awesome read. I stayed up really late to finish it.
You rock, man."
"You are a gifted writer (perhaps in a body cursed with too many T-cells) ...but...blessed none the less!
Your writing is an oasis in the desert of misdiagonses."
"I want to especially thank you for your book - not only was it a fantastic form of validation for me, it confirmed that I am already on the right track treating with a naturopath, and also it convinced me to finally adopt a couple cats that were loooong overdue in my formerly busy life. Luckily I too am blessed with a wonderful spouse who understands and supports me in all that I am going through. I just wish I had the energy to help fight this Invisible Blight on the health care system and do battle for others that have no advocate."
Lissa August 2011 C
"I can't wait to read your book. I got it, and skimmed bits and started it, and left it on the table. Then my husband picked it up, and he is so gripped by it, I really can't take it away until he's finished."
"I could identify with your wonderful, wonderful book. Your stories about the pets and creatures in your life made me laugh at times and cry at times. Your book deserves a lot of attention. It is emotionally very powerful, enjoyable to read and inspirational. It reads like a novel."
"I just finished reading your book and wanted to send you an email to tell you how much I appreciate your taking the time to write it. I've recommended it to a number of people already as it paints such a clear picture of what life really is like after CFIDS moves in. I've had this illness and Fibromyalgia since 1986, although wasn't diagnosed until 1992, so I've lived through much of the history you describe and remember it all too well. I've travelled the same paths that many of us seem to but am more fortunate than most because I live in Miami and am a patient of Dr. Nancy Klimas whom I'm sure you're familiar with as she is one of the pioneers in this area and is currently on her second term as President of the International Association of Chronic Fatigue Syndrome.
While I remain ill after 21 years, I am more encouraged now than I have ever been because I was able to attend the IACFS conference in January and witnessed the reports of all the incredible research that is being done all over the world. With the amount of information that's being brought to light now, any doctor who still says he doesn't believe that CFIDS is a legitimate illness is just plain ignorant and too lazy to keep up with the research! We have a long way to go but at least it's not completely up hill at this point.
I hope today turns out to be a day that you're smarter than your sweat socks! Thanks again for putting into words the world of CFIDS.
"I don't envision any patient that would be disappointed with his riveting style of writing and his brash honesty. ... It's a book about nature, about love, about life. ... that will both entertain and enlighten, and one that you will want to pass on to your friends and relatives."
National CFIDS Foundation
"I just finished your book that Mike Tveras sent me. I am very impressed! Your style of writing really turns a dull topic into an enjoyable experience. It certainly is the best piece on CFS that I have read and I would like to send some copies to family and friends, especially those who just don't get it. Since I'm part of the Medical-Industrial Complex I was prepared to be more offended. I wasn't. Probably because my experiences with Drs. and insurance companies has been identical to yours. I am embarrassed to be a part of it at the same time I'm being victimized by it. When I revealed to my colleagues that I had CFS it was like telling some of them that I had seen a UFO. I immediately lost stature and respect. Many of these colleagues know very little about CFS and even less about caring for someone with it. These are the same doctors that pride themselves on their breadth and depth of knowledge of cancer, heart disease and diabetes. It's as if by remaining ignorant about this illness they are somehow preserving the dignified objectivity of the science of medicine by not giving in to the make believe symptoms of of these difficult patients. Perhaps I knew that would happen and that's why I did not tell anyone for 6 years and just put up with the pain and limitations. I am fortunate to not have the cognitive problems that many do. I remember going out to San Diego to see an "expert" on CFS, Dr Jay Goldstein. I sat in his waiting room for 8 hours a day with other CFS patients while we were waiting our turns to try different drugs. We all talked, of course. When they found out that I was an MD, they crucified me. I tried to defend myself and point out that one is not guilty by association but I think it would be easier to defend a terrorist. I do hope that I will have the opportunity to take care of CFS patients again in an office practice someday. I think I would have more to offer than most of my collegues.
Please tell me how much I should send for the books and mailings and I'll send a check or whatever. Thanks again for what you have done with your publication.And for what you have done for CFS patients. Someday when I have made more recovery than I have so far, I would like to be involved with actively helping you help patients. I cannot publically speak now or committ time to much else than my family. I'm still in bed 18 hours per day and have 3 young children and a wife who gets stuck with everything who needs support. If you have some ideas of something I could do now, run it by me and I'll see. I would enjoy a dialogue with you at anytime."
"We have been going through all our files in preparation of selling the main house. Today we found the file on my daughter, regarding the horrific 2 years she was bed confined with severe CFIDS.
Her descriptions were graphic & frankly I had forgotten how much she suffered in 96 & 97. In the file was a letter describing a meeting she attended on CFIDS. In it she makes reference to the "Carlson's", of whom she was very impressed & liked very much.
It may be a bit late, but I want to thank you for all you did for her, and all you continue to do for the unsung sufferers of this insidious condition. You are a hero in the true sense of the word, rising above & beyond the call. I admire & respect your efforts & your personality. I personally could not persevere in the endeavor you have so eagerly embraced.
(Right now I am just thankful I can get out of bed in the late morning). Keep up the good work. Do not expect anyone to care, or render support, unless they have been through what you have been through. That way you will not get discouraged or disappointed."
Your Friend, Mike.
"Thank you for your prompt response. I received the book today. Thanks also for your efforts on behalf of all of us suffering with this disease. I listened to your press release and radio broadcast and congratulate you on your success in Vermont. I've read many accounts of people's experiences with CFS, but none that describe the experience as well as you do. I also appreciated your comment that real healing begins with acceptance, and that such acceptance is not a sign of failure (it took me a very long time to learn that lesson)."
Edwina Hartshorn Flynn
Review by Pat Fero, Wisconsin ME/CFS Association:
The Association received a flyer about this book and I contacted Rik to acquire a copy for review. I give this book a 10. Rik writes about the details of his journey through chronic fatigue syndrome. He had an "Ozzie and Harriet" family, was a campus activist during the Viet Nam war era, and created a non-traditional, but highly successful business venture. Then... January 1, 1995, he got the flu. Happy New Year.
Within a short time, Rik was back running a business - working sick, just as many people di while they wait to recover. Rik says that one peaceful Sunday morning. at 11:30 AM, "in a heartbeat, I was unbelievably sick. It came out of nowhere in a wave that slapped me into a chair, took my breath away and knocked me senseless."
Do you remember the first few years of illness - the stupor, the anger and sadness like a lingering nightmare? I will wake up. I will wake up. Remember the insurance company hassles, the doctor shop and your dismay, outrage or disbelief that anyone could think this illness transformed you into what you use to call a nut case? How about those pills? Rik describes all the firsts. What? Antioxiwhats?
I liked Yuppie Flu. Matter of fact, I started to read the book after 10 PM one evening. What was I thinking? I finished up at 1 AM and tried to sleep. Not. So I got up to e-mail Rik a few comments. Uh huh...
Rik writes well, has a voice for detail, side humor, and is good at conveying truth without sounding pitiful.
"It is truly THE best book on CFS I have ever read." Keryn Dawer
“I just finished "We're Not In Kansas Anymore."
It was exquisite. A gem. I have so much trouble reading and comprehending, but your book was truly a joy to read and a comfort to me.
You are a fantastic writer. Amazing, twisted sense of humor. And incredibly accurate in your portrayal of what the medical community has done to patients like us. I felt like I knew you after reading the book
I really want ... the world (to) know about your book and movie. Both are such important works.
For me, the book was a blanket of healing.”
“Just wanted to say I REALLY loved your book ‘You're Not in Kansas Anymore.’...
Some of it should be front-page news, like the doctor you wrote about who was an axe man for the insurance industry...
I love your writing style. ...
It did my heart good to read your story and about what you've gone through. It helped me feel not so alone (I've had this disease for 25 years), but even better, it got me totally riled up and boiling mad, (again) and more determined to fight this awful system we are mired in.
Bless you for hanging in there...
Good work you've done, with movie and book.
"I purchased your book as a Kindle ebook several months ago. I have wanted desperately to email you to tell you just how completely blown away (in the best possible way) I was by YOU and your book. It is truly THE best book on CFS I have ever read. I was deeply affected and moved by everything you wrote--your idyllic 1950s childhood, your adolescence and early adulthood in the tumultuous 60's (better than any history lesson, book or movie!), your oh so 70s waterbed business (I was a kid in the 70's and boy do I remember waterbeds!), your life-long adoration of the feline species, the acute onset of your illness, its mercurial/variant/transformable/hideous nature, trying to heal thyself (with every imaginable hodge-podge), the astonishingly awful name that has haunted us all, the insane belief that we are all "faking it" and are, thereby, all quite insane and in need of mental health services, and finally your description of the Great Battle with Goliath! I laughed so hard at your way with words. Not, of course, because the topic is in any way light, but because YOU are astonishingly funny and your insightful yet benevolent and poignant humor speaks the truth more accurately than any other form of communication. You are eminently gifted and I thank you for the feeling of "connectedness" I felt when I read your book."
"Hi there Rik -
Just had to let you know I read your book. Yep in one sitting! It was great!! My birth-year is also 1947 so there was more in it for me than CFIDS, it was a great walk down memory lane in so many ways. It was amazing to me that I was able to read your book today. You have such a great style of writing and story-telling, ... I haven't been able to read a book for some time now - it had to be your writing."
"I just finished your book and it was fantastic. You have caught the true essence of what this disease feels like and what we go thru. I am not as fortunate as you in having an understanding family---thank you for pointing out that many of us do not have the means that you do. I am 60 and live alone...well, not alone...I have my Kitty and she is so precious to me. I have a large family----mother and 6 siblings. None of them "get it" and there is only one sister that I have tried in vain to educate. But she is so BLONDE, very very BLONDE. I am going to give her a copy of your book for Christmas and make it mandatory that she read it by my birthday and tell her it is the only birthday present I want from her---to read your book!"
"I really enjoyed your book. I particularly enjoyed your love of animals and the way you
expressed it with such abandoned vulnerablity. and oh, yes, you are so right, I will
never forget that poor little new born squirrel and it's haunting cries."
"Once I started reading, I couldn't put it down. You explain how this FEELS better than anything I have ever read. You are blessed with an amazing lively writing style that puts into words what everyone with CFIDS wants to say but often can't. Thank-you, thank-you, thank-you, from the bottom of my heart! I am so grateful that this story has been told."
Julia Alzofon, PhD.
"I really had fun reading this book and I learned a lot. Perhaps "fun" is an odd reaction to so serious a subject, but We're Not in Kansas Anymore is highly entertaining. Everybody in America should read this book. It's about us all. Truly a wonderful read."
"Physicians should read this book. The unique sense of humor that prevails makes it enjoyable, almost fun reading. A landmark Guide."
Charles Anderson, M.D. FAAFP
"Your book was wonderful. Read it in one sitting. Couldn't put it down. You are a fine writer and must do more. You come across as a warm, caring, and funny human being. Plus so honest.
Ginny Flynn, Burlington, VT
P.S. I hope and pray for your recovery."
"I give it a 10. This book is superbly written, fun and steaming as the author questions the ethics of US public health agency research funding, big business insurance, and our health care system, issues faced by all who experience chronic disease." Pat Fero, Wisconsin CFS Association, Inc."(I) loved it and thanks for writing it. You are a talented writer, you pull no punches, and I appreciate you."
Eileen Sheehan, Hendersonville, NC
"We’re Not in Kansas Anymore:
Chronic Fatigue Syndrome and the Politics of Disease”
by Rik Carlson.
A BOOK REVIEW by Cort Johnson, Phoenix CFS
A self-made businessman who’d seen both the top and the bottom of the business cycle Rik Carlson looked like he’d really made it when on New Years day of 2005 he came down with a case of the flu. He got over it – it came back, he got over it – it came back, and then not long after a close friend unexpectedly died it hit him like a sledgehammer and he didn’t get over it.
I just swallowed this book up. It wasn’t hard to do. It’s a great story and Rik is a natural story teller.
With a foot in the sixties and another in the business world he is an intriguing blend of romantic and realist. He doesn’t beat around the bush, he doesn’t try to pretty things up, he’s blunt and he’s sincere.
More than anything else this is a personal account of ME/CFS. The tension he felt as he waited for his disability appointment was palpable. His almost blow by blow account of his monumental and appalling battles with his insurance company should be required reading not only for ME/CFS patients but for everyone faced with a controversial disease. Throughout the book Rik guides us through his difficulties and his successes with an honesty that’s engaging and compelling.
The few chapters on the history of ME/CFS didn’t grab me – they’ve been told before - and they aren't his forte. Rik’s gift is in his personal essays and those pop with an energy, indignation and dark humor which makes his frequent softer asides such as his enchantment with his cats and his new found love of nature all the more appealing.
Rik was not a writer before he got ME/CFS but he digs deep into his experience and his prose shines with a forceful rhythm of its own. ‘We’re Not in Kansas Anymore” is a compelling account of one mans struggle with ME/CFS.
The following is a review by Gail Kansky who is the Editor of The National Forum and is President of the National CFIDS Foundation, Inc. in Needham, Massachusetts.
It appears in The National Forum,Vol. 6, No. 3, Winter 2002-2003.
Most books we review in the Forum are sent to us by the publisher in hopes for a good review. Sometimes they're severely disappointed when the reviewer trounces on their free review copy harshly. This time I requested a review copy. The author was the head of a support group that went on valiantly for a decade before recently disbanding. I had spoken to him, briefly, a few times over the years. I was curious and prepared to be disappointed. I wasn't. Yuppie Flu is a great book about the author, his life pre-CFIDS, and the life he now lives. It's an honest, down to earth book that pulls no punches. Rik isn't a journalist, but he writes from his heart. He pulls no punches, but his book is one you won't soon forget.
From Mouseketeers to Vietnam and beyond, Rik lived his life with gusto and relished success. The first chapters introduce you to Woodstock and his baby-boomer history. Then he got the flu, but it was the yuppie flu and recovery wasn't to be. "In England and Japan it's called the Myalgic Encephalomyelitis, or M.E. There are dozens of names. My favorite is Yuppie Flu. Some bristle at that name because it's demeaning. I like it because it's not nearly as offensive as the name chosen (chronic fatigue syndrome) and because it sports cultural charm."
Rik had a classic and devastating abrupt onset of ME yet he writes with a quirky sense of humor that actually makes this tale of suffering entertaining and highly educational. It took him six years to write the book and it was truly self published as Rik put it together in the basement of his home. Yet I don't envision any patient that would be disappointed with his riveting style of writing and his brash honesty. I certainly don't agree with Rik on all fronts. For instance, he truly believes, as I once did, that the CFIDS Association (CAA) is a beacon of hope. I found out differently and the rest has been history, but I can understand why he would feel this way. There is so much that a patient will understand and so much a non-patient would learn, that it's a shame this book can't be required reading for a host of people. When Michelle Akers becomes the CAA's poster child, he writes, "This isn't a vacation. Long rides in the country and jogging at leisure aren't in any CFIDS profile I know. When you're crawling on your bloody stumps just to get to the bathroom, when you can't carry on a conversation because you're no smarter than your sweat socks, and when you're always about to vomit because a hatchet is buried in your forehead, you're hardly prepared to 'savor life in general.' " Rik is able to write what he couldn't, for years, articulate, and it is a wonderful read that no patient should miss. I felt good when I finished this book because I knew that Rik was one of those who will benefit from our research and one of those who deserves to! He was and remains a fighter that all the abuse ME/CFIDS has to dish hasn't dulled.
With a Forward by one of Rik's physicians, this is a book that touches upon the political history of ME/CFIDS and how the insurance companies are out to deceive at all costs. It's a book about nature, about love, about life. If you're in the mood for a book that will both entertain and enlighten, this is one that you will want to pass on to your friends and relatives. It's nothing short of delightful despite the severity of the subject matter!"