BOOK REVIEW AND INTERVIEW WITH RIK CARLSON
THE FOUNDER OF THE VERMONT CFIDS ASSOCIATION
by Cort Johnson (10/07)
was a successful small businessman for many years before being
struck by a severe case of CFS following a flu-like illness on
New Years Day in 1995. Two years later he had lost his business.
He founded the first state Vermont CFS group, the Vermont CFIDS
Association. In 2003, after six years of work he published a blunt,
articulate, darkly humorous biography "We’re Not in
Kansas Anymore" that chronicled his (fascinating) life before
and after CFS. In 2006 the VT CFIDS Associations efforts culminated
in the Vermont legislature’s passing a bill with the object
of providing an ME/CFS Manual to every physician in the state.
In 2007 his DVD won the PANDORA CFS/ME DVD contest.
First a review of his book and then the interview.
photo by Lainey
Not in Kansas Anymore: Chronic Fatigue Syndrome and the Politics of
by Rik Carlson.
BOOK REVIEW by Cort Johnson
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.
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.
“We’re Not in Kansas Anymore” can be bought
directly (and signed) from Rik, from bookstores in Vermont or
in a very affordable .pdf format from the Vermont
CFIDS Association Website.
Interview With Rik Carlson
(1) Stress and CFS is a touchy subject. On the one
hand you seemed to thrive on the stress that comes with running
a small business writing "I’d have phone lines backed
up and people waiting to see me and with each person I was up
to speed in a heartbeat and ready for more. I loved it! I was
a player! I always wanted more". Your last month of work
was your best ever –but you also wrote that "I ran
myself ragged and felt it". On New Years day you got sick,
worked through it as you usually did, but a week after a good
friend unexpectedly died it felt like you were hit, as you put
it ‘with a sledgehammer’ and like ‘an anvil
sat on my chest’. You’ve talked to a lot of ME/CFS
patients. There is some research evidence suggesting that some
sort of stress may somehow trigger ME/CFS. Do you hear this kind
of story from the ME/CFS patients you’ve talked to?
"All the time, the type A personality
and a trigger. Divorce, bankruptcy, car accidents, just last week
we met someone whose trigger was a severe dog bite, but it’s
not always so intensely dramatic. Laura Hillenbrand in her New
Yorker article about CFIDS describes riding in a car and almost
hitting a deer, an event more startling than severe.
As a note, people with CFIDS are always trying to describe it.
It’s such an intense and bizarre disease that explanation
is constantly warranted. While I talked about the anvil on my
chest, or my body being made of lead, the woman who was bitten
by the dog was being "crushed by an elephant "and one
of my favorites (if you can have a favorite) was the woman who
wrote me about "her head being stuck in a bottle of glue."
(2). You’ve seen quite a few doctors. Have they
come to an agreement on what happened to you. Do they think it
was a virus? If so do they think they know which one?
"Ironically, my first physician
had it right when he called it a post-viral syndrome. I asked
if we should test for Epstein Barr and he said that even if they
did, there was nothing to do, so why bother? Ooops. Then he left
the medical practice and I began the search for primary care.
I was told that I fabricated it, and that it was depression (repeatedly),
but then got some very good insight from an ND, when he found
non-active natural killer cells and high titers for HHV -6. I
soon understood the need for antioxidants and minerals to, at
the very least, keep my body from getting something else. Sound
pharmaceutical grade nutritional supplements are essential. I
did find an understanding MD and added the "Meyers Cocktail",
to my protocol. He retired and I continue this treatment with
the physician who bought his practice. She’s terrific and
we’re back to Epstein Barr.
Recently I saw a cardiologist and being in the presence of a new
physician I was afraid to say the words (CFS). Many of us know
what it’s like to be filling out a new-patient form, and
when we get to the part about Chronic Fatigue Syndrome, seeing
the eyes roll at the other end. Nobody ever said it would be easy
and nobody ever said it would be fair."
(3). You stated something of a turning point in your
health occurred when you accepted that CFS had basically won.
"After fifteen months I accepted the illness and threw in
the towel. That was the day I started to heal. It was in defiance
of human nature, of my own nature and a terribly humbling moment.
I remember like it was yesterday. I gave in to it. I lost."
What did accepting CFS do for you?
"It allowed me to accept the
long term severity of this hideous disease and to make recovery
a full time job and the whole of my object."
(4). You provide several almost blow by blow encounters
with the insurance industry doctors or other personnel. I’ve
never seen the ugly underbelly of the insurance industry so vividly
portrayed. It’s a dark side of the medical experience, yet
its one that ME/CFS patients need to negotiate as well as they
can. As difficult as your case was you negotiated it quite well.
What steps do you recommend that ME/CFS patient take to enhance
their chances with insurance companies?
* Secure a trusted advocate.
* Establish a relationship with
a trusted physician.
* Keep a paper trail.
* Beware of physicians that are
in cahoots with the insurance companies. Some choose business
(5) You found that using breathing exercises and a
method of hypnosis called Silva Mind Control, helped, at least
temporarily, to slow down your thoughts and clear your mind. You
also found that you needed genuine relaxation time; watching CNN
didn’t cut it (!) but listening to Mozart did. In his new
book Dr. Friedberg, a CFS patient and psychologist, talks about
how effective these kind of relaxation techniques can be. Are
you still doing these type of activities? How important are they
"Breath is life. Little things always
get me wound up and I need to slow down. The answers are yes I
do, and it’s very important."
(6). You had an interesting experience with cribbage.
You said "Early on…I was obviously retarded. I struggled
like a bastard with the rules and with adding the numbers. It
was like weight training for my brain" Over time, however,
it seemed to work as you go on to state "It was indeed physical
training for my brain and it worked. My mental clarity improved."
Do you continue to find this kind of activity to be helpful?
"It’s amazing how mathematical
skills become remedial, I struggle with simple arithmetic. How
many with CFS lose control of their checkbook? Lately my course
of study has been with computer programs, but once the snow flies,
the cribbage board will resurface. Just imagining the combinations
of fifteen boggles my brain."
(7). Are there any treatments you want to pass on
that have been particularly effective for you?
"I had one very effective treatment
with acupuncture, but only one. Also a very positive experience
with hypnosis. Bottom line however, is that I hang my hat on sound
pharmaceutical grade nutrition in conjunction with diet and life
style adjustments. I seek rhythm to my daily activities. I take
advantage of the "windows", and do my best to not cross
that "invisible line". CFIDS people know what I’m
(8) You described several small events that upset
you terribly. I’ve noticed since I’ve got ME/CFS that
I’m more likely to be bothered by small incidents and that
if I do blow up it takes me longer to recover. I was intrigued
reading old accounts of myalgic encephalomyelitis to hear ME patients
report that a new kind of ‘nervous tension’ pervaded
their lives. Does this ring true with you? Are you more on edge
since getting ME/CFS?
"In the early days, I was just so God
awful sick, that I was angry. In traffic, I was angry, but especially
when someone did me wrong, I’d lose it. Once at a pharmacy
I had my arms full of stuff and was in line at the register, when
the clerk closed the line and told everyone to go to another register
at the back of the store. I flipped, mostly because I didn’t
have it in me to walk that distance and start all over again.
I dropped everything in my arms, used foul language, left the
store and came home with nothing. I was so embarrassed and it
hurt and my sickness exacerbated rapidly. It was no fun.
On another occasion I was being ripped-off for close to $300 dollars
at a car dealer and made a scene in the waiting room, warning
the service customers to beware. I drew a crowd. Again, I worsened
dramatically. I have since learned to control my anger.
I have learned to recognize when the cards are against me and
when to walk away. I know when the vibes aren’t in my favor
at the grocery store and I just leave and work it out later. Like
I said, I don’t know if I’m getting better or getting
better at living with it."
(9) You had a very alarming incident at the end of
a long winter when you couldn’t sit up and your blood pressure
skyrocketed. A trip to the hospital revealed nothing dire and
a cardiologist diagnosed a high heart rate due to inactivity.
You got a pedometer, some (very small) hand weights and started
a small exercise program. How has this gone for you? Did it clear
up this problem?
"The rapid heart beat has happened
again and now I’m on medication and I own a blood pressure
cuff. It’s easy for a physician to prescribe exercise but
many of them don’t understand how just a little too much
can worsen us dramatically. It’s being stuck between a rock
and a hard place.
I recently hosted an art show that was literally years in development,
and while I hired others to do most of the work, and I prioritized
every activity, in the end, I still tried to act like a well person
and it took me down, quite dramatically and it was frightening.
Nobody ever said it would be easy. I struggle for balance."
(10) At the end of your book you talk about the silver
linings CFS can bring. You note that CFS made you slow down and
that has lead you to get in touch with experiences you might not
otherwise have had. In her book ‘Encounters with the Invisible’
Dorothy Wall talks about how important the simple beauty of things
became for her. I’m not in any way trying to turn CFS into
a positive experience but in a few ways it sounds like this struggle
has perhaps turned you in some directions you might not overwise
have taken and some of them have been positive?
"Dr. Andrew Weil wrote seven strategies
for successful patients. The seventh one was 'Find the silver
lining. Many see illness as a gift because it forces change for
the better.' When I first read that, I was fully embroiled in
the malaise of disease and it infuriated me. There was nothing
I could find that could even remotely be seen as a gift. How could
he be so stupid?
As we know, CFIDS is a long term disease. I often say that I don’t
know if I’m getting better, or if I’m getting better
at living with it. It’s actually a little of both. I am
at a stage now where I have made the major adjustments and my
days are not filled with profound debilitation. For that I am
CFIDS has allowed me to be closer to my family and that’s
as it should be. "Recovery" is a matter of priorities
and family is #1. I have readjusted my skill sets to focus on
computer generated art and that has become very rewarding, so
what I once found unimaginable I now find to be true. Dr Weil
was right, but my anger was justified."
(11) You ended your book the same Dorothy Walls did
hers; eyeing a trip for the first time in a long time. In your
case it was to be to an island. You’d made some real progress
but your health still couldn’t be described as anything
other than awful. Did you make the trip? Have you made any more
in the four years since the book was published? How are you doing
"We did, and it was lovely. We went
to Hornby Island in British Columbia and it was beautiful and
remote and our friends understood my limitations and nurtured
me. Other than the travel time, we relaxed on a bluff overlooking
the ocean where the eagles soared. It was magnificent.
I did better than I expected. However, if I never travel in an
airplane again, that would be o.k. too. Missed flights and time
delays took their toll. Now, I do my best to stay at home. I live
in a healing environment. I’m one with my cats and heat
with wood. I have setbacks and fear of relapse looms as a companion.
Again, I seek rhythm. I consciously try not to get upset over
things I don’t control."
CFS/ME in VERMONT
(12) In your 2006 letter
to the CFSAC you talk about how you’ve seen people with
CFS ‘just disappear’. It often starts with a string
of fruitless, sometimes humiliating physician’s visits.
The next step is usually the loss of job, career and financial
security, along the way relationships often break under the strain,
there’s the fall through societies frayed safety net and
finally a disappearance. For those who are not fortunate to have
family or some other support they can fall back, this disease,
as difficult as it is already, can get incredibly grim. Do you
hear this kind of story much?
day, and it breaks my heart."
(13) After two years of providing little more than
sympathy, your primary doctor finally decided to tell you that
your insurance plan covered a local ‘CFS expert’.
That, of course, got you quite excited but not only was he not
taking new patients but he wouldn’t even give you a referral
(!).The last thing he wanted was another CFS patient – they
were too difficult and just took up too much time. What is the
situation in Vermont with regard to CFS knowledgeable physicians?
Has it gotten any better over the past 10 years?
of what’s happening in Vermont will be made clear in our
soon to be released film."
THE VERMONT CFIDS ASSOCIATION
(14) You started the Vermont CFIDS Association in
(1996). How did this come about?? What did you want to accomplish?
"I attended a
support group meeting for Fibromyalgia, and learned of a previous
group for CFIDS. They had stopped meeting, so with a few phone
calls I established a meeting place in the Congregational Church
in Essex Junction and then put a phone call in to the television
station. Barbara took me to the first meeting and when we arrived,
there were 30 people! At that time, I just wanted to know how
many others were sick like this and what they were doing about
it. I couldn’t see beyond how very sick I was. The reward
was to learn I wasn’t alone."
(15) The Vermont CFIDS Associations closed in 2000.
It seemed like once the group ran out of doctors to speak before
it or potential cures to explore that that the interest faded.
It seems to be up and running now. What has happened with the
VCFSA and what is its status now?
"We meet again
once a month in a new location in a much less formal manner, but
with the emphasis on support. Our secretary, Lainey Rappaport,
is a tireless promoter and with a core group we always find new
people. She maintains small public service ads and through word
of mouth, we find each other. Our last May 12th event was to a
full house and one member commented that with everyone all dressed
up she felt like she was in church. Amen."
(16). Organizations need at least some money to run
on. Does the VCFSA take much money to run? What are your major
expenses? Where do you get your funds from?
"We are an all
volunteer group and no longer do fundraising or maintain a checking
account. We are always in search of a healthy person who would
want to restore our nonprofit status."
(17). In order to have an organization you have to
have members and in order to get those you have to advertise yourself
in some way. How do you find your members?
"We operate through the web
site, public service ads, and word of mouth. New people find us
all the time."
(18). We keep hearing about how poorly the local support
groups are doing across the country. What’s the situation
with local support groups in Vermont? Are there any? How have
they have they fared over the past 10 years?
who are desperately ill and whose personal lives are in distress,
the additional challenge of an active organization is usually
too much to handle. We are in the northern part of Vermont and
the most populated part of the state (more people than cows).
Years ago there were a couple of groups in southern Vermont but
I hear nothing from them anymore. Activity is limited to individual
(19). Looking at your biography I was struck by the
thought that you were almost a group leader waiting to happen.
As a small businessman you’re used to starting up enterprises.
You obviously have a flair for advertising and you’re outgoing
and comfortable with the public. Do you think that your background
helped you in your support/advocacy group work?
"Yes, but what
has been more important is my gender. The way women are treated
in the medical community as well as in the business world is abhorrent".
(20). In 2006, after years of work the VCFSA got Vermont
legislature passed a bill to provide money to educate Vermont
physicians about CFS using the New Jersey Consensus Manual on
CFS Diagnosis and Management. How did this project evolve?
did this twice. The first time we were trapped behind an outdated
CDC definition and a medical establishment that thought we didn’t
exist. The second time I started by meeting with a single legislator,
then put him together with our group and Dr. Friedman, and the
Consensus Manual. He arranged for testimony before a house committee
and through an e-mail network we solicited the support of other
legislators. We passed as part of the Department of Health budget."
(20). You got nine representatives to sign onto this
bill. What did this entail? Was it a matter of CFS patients and/or
supporters meeting legislator after legislator until you got enough
of them? How receptive were the legislators overall to this proposal?
"Be it known,
that the most powerful political document is the hand written
letter from a constituent to a legislator. E-mail, while convenient,
runs a distant second. A true politician thrives on personal contact
and our support was genuine."
(21). You used a CFS Treatment Manual produced by
the New Jersey Dept. of Health in association with the New Jersey
CFS Association as the basis for your packet. Other than using
their Manual did you interact with the NJCFSA in any way?
"Our common denominator
is Dr. Ken Friedman. We share support with New Jersey on our web
pages and are extremely grateful for their Consensus Manual as
a foundation tool. Without either Dr. Friedman or the Manual,
we would be lost"
(22). What is the status of the Manual now in Vermont?
Has the state done what it said it would - has it distributed
it to the physicians in the state?
"Half. They built
a web page for us and have made the link available to physicians.
They will print copies for residents by request and also offer
it as a .pdf file. We had the disability chapter rewritten by
a Vermont attorney with the agreement that they would put Vermont
on the cover, but that has failed to materialize. We do, however,
maintain a courteous relationship."
(23). You had the backing of the Vermont Dept. of
Health five years ago and passed similar legislation. But when
the Dept. looked to the CDC for their regarding treatment it didn’t
extend much further than assessing the patient for psychiatric
disorders. Now the CDC has an updated website, a training program
designed to educate primary care physicians, one of the program’s
trainers, Dr. Friedman, played a big role in your effort, you
have a Consensus Manual...Is it easier for advocacy groups to
be effective now?
"Yes and No.
While we have support from the Department of Health, we have yet
to establish any significant recognition from the main stream
medical community. To really be of help to anyone with CFIDS in
Vermont, that’s what we need. We need CFIDS to be taught
in medical school’s, we need CFIDS brought to the hospital’s
in educational training programs and we need the respect and attention
deserving of a debilitating long term disease. People with CFIDS
in Vermont are dismissed. Many struggle to find understanding
and support within the traditional medical community and repeatedly
come up empty. Doctor’s need to be taught. Recovery programs
need to be developed. I hear stories of misdiagnoses and outright
ridicule with regularity, events that fracture spirits and destroy
families, and it breaks my heart. When we change that, we’ll
start to understand success."
(24). What does a support group need to carry something
like this through? Is there any reason you can see that this type
of effort shouldn’t work in other states?
and the New Jersey Association have been very generous with their
time and with the Consensus Manual. It’s a matter of finding
a supportive legislator and doing the same thing."
(25). What advice can you give groups contemplating
similar efforts? What would you have done differently? What did
you do right?
"The only way
you won’t experience a modicum of success is if you quit.
I’d have done nothing differently. Persistence is the key."
(26). In 2003 it sounded like you had a couple of
hours of work a day available to you. Being an advocate obviously
has its energy costs. On the other hand you’re trying to
make a difference in an issue that’s very important to you
and that in itself can be quite energizing. Have your advocacy
efforts affected your overall health in any way?
support group was a selfish thing. All I wanted to do was get
better. When you run out of doctors, the next step is to find
others with the same problem and find out what they’re doing.
Restoring my health is my full time job. I’ve learned and
bettered myself as much or more from the group than any physician.
We were a temporary 501(c)3 and when I learned how much work was
required to be a full time nonprofit, I couldn’t do it and
no one in the group had the strength or energy required and it
lapsed. True recovery insists that you know when to say no."
(27). What’s next for the Vermont CFIDS Association?
Are there any more initiatives planned?
"We meet once
a month and our last meeting was very good. We support each other,
and that’s what it’s all about. Of course we also
recognize May 12. I am working with a close friend and associate
and we are producing a film called "Invisible in Vermont"
which is a compilation of interviews with some of our support
group members as well as Dr. Friedman and medical professionals.
The purpose of the film is to provide a tool so that someone with
CFIDS can show it to a spouse or relative, or neighbor, employer,
or physician. Our goal is to provide credibility. The longest
journey begins with a single step."
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