Inkwell: Authors and Artists

    

as an aside, i -loved- that presentation you made at the santa fe institute
about mysterious chronic illness.

i do tend to buy the theory that ME/CFS may be a cluster of diseases that
take ppl differently. i had a friend who came down with it in the 80s; her
report was that it happened after she 'had a virus' and spend two yrs flat
on her back at her parents' house, giving up her career for those years.
what seemed to clear it up was taking antibiotics for another unrelated
respiratory infection. so not clear she was a moldie but it is clear that
she was someone stuck in a horrid neuro-immunological loop which somehow got
broken when she went on antibiotics.

one of the things i love about your work is your delineating how one must
become one's own health navigator.

i have had the opposite prob: for 40 yrs, have had to try to find my way and
try to explain to Normals (whether in the health profession or civilians
outside of it) 'no, i cant tolerate X/Y works for me/no i dont have a
medical model just am telling you how it is'. thinking of how in my 20s i
lived in a charming redwood cottage in berkeley --- which had mushrooms
growing in the shower and ivy coming through the walls. after a yr, i was
having all kinds of neuro + GI symptoms --- and all i knew is that i had to
get out of there. within a month of doing so, my symptoms subsided. but
trying to explain to Normals back in 1975 'i think i am having a systemic
reaction to mold' = fuggedaboutit. and no, there was no peceptible black
mold or other obvious signs of mold in that place.

funny, with all the homage paid to 'mindfulness' or 'centering', for decades
now --- it's amazing how many ppl are so resistant to someone who actually
says 'i know what works/what i cant tolerate'.

grr.

anyway, i celebrate that you are explaining to Normals how mostly-rational,
science-respecting sickies --- may have to follow their own path outside of
Mayo Clinic-authorized or other protocols.

to me, mold reactions feel very similar to MCS ones, fwiw...
  

    
I'm very much looking forward to reading your book, but in the
meantime wondered if you could talk a little about the mechanics of
going to the desert with none of your belongings? Did you buy new
clothes? In which state did you go to the desert?
  

    
Ah, wonderful question, <lendie>!

Frances was a godsend. A few posts up, I told the story about how
valuable it was for me to work on training her to be a service dog.
But beyond that, she was my one consistent companion during a really
lonely period of my life. And she's an especially joyful dog -- the
world is just a wonderful, wonderful place for Frances, and having
that joy around me all the time made a huge difference in connecting
me to my own joy even when the situation I was dealing with was
exceedingly difficult. She was also a source of physical comfort --
she spent many, many hours curled up next to me in bed, her solid,
warm little body a huge source of comfort.

Another aspect of her importance in my healing process is that the
process of training her taught me a whole new approach to training
brains -- an approach that I later applied to training my own brain
to reduce its reactivity to mold (once I'd given my body a good long
period of avoidance to recover). 
  

    
The lecture Paulina mentioned is online here:
<https://www.youtube.com/watch?v=LrTye7jQw2M>

And a transcript of it is here:
<http://paradigmchange.me/wp/pitfalls/>. 

That talk ended up being the thing that persuaded Jen Brea, a
filmmaker and patient, to successfully experiment with mold
avoidance for herself. Jen produced the film Unrest, which I highly
recommend, and gave this fabulous TED talk:
<https://www.ted.com/talks/jen_brea_what_happens_when_you_have_a_disease_doctor
s_can_t_diagnose>

Good for you, Paulina, for figuring out that that house in Berkeley
was a problem for you and trusting your gut enough to get out! Well
done. And yes, it can be extremely hard to explain this stuff to
people who don't have any similar experiences. That's part of the
work I'm trying to do in the book -- to lead people, step by step,
into this altered universe where things work so differently from how
one expects, and in the process, to kind of expand folks' sense of
how the world can work.
  

    
Sure, happy to talk about that, <ssabrina>. I bought a bunch of new
stuff, especially clothes, and I also borrowed a bunch of stuff from
friends. Of course, I had no way of knowing if any of the stuff I
brought was contaminated, since I couldn't detect it at that point,
but I figured that it was likely to be better than my own stuff,
since (assuming the theory was true) my own stuff was steeped in the
exact stuff that had caused me the most trouble.

I was quite frugal about it, and I managed to keep the expense to a
bit under a thousand dollars, including buying a solar panel so that
I could have a bit of power while I was out there. Having outdoorsy
friends helped a lot, because I was able to borrow almost all of the
really expensive gear, like a tent and sleeping bag and stove and
whatnot. And I really did buy ALL new stuff, down to a new
toothbrush. The only things of my own that I brought were my phone
(which I kept in a ziploc bag) and my mother's necklace (because I
wear it all the time and forgot about it).

I ended up going to Death Valley -- which seemed so poetically
perfect I had to laugh, since I felt like I was going to the desert
to die. The funny thing is that I really didn't want to go to Death
Valley, because I'd been there with my former partner and didn't
want to relive those memories. But I felt almost forced to. It was
February, and most other options were too cold. Between all the
requirements, Death Valley was the only reasonable choice. And it
turned out to be an amazing place to go for that experience. 
  

    

my enlightened self-interest wish for your book is that it can explain to
Normals --- how it really is to navigate in this parallel universe. you have
STEM cred as i do not --- so i kinda want to shriek 'listen to julie! she
will explain!'
  

    
The book does explain. Patiently and persuasively.

I'm a "normal" in this regard, and while I've known Julie for a
while, been to her wonderful house, seen her sometimes wailing at
unexpected relapses on-line, I now know much more than I did about
how it feels, probably how it happens. 

I'm just reading now about the beginning romance of Julie and John,
and it's both touching and delightful.
  

    
I'm so glad to hear that, Pamela. Because I was myself dragged into
this world, with my skeptical mind screaming all the way, it's
natural for me to describe this in a way that will keep my
skeptical-minded readers on board with me.

While I do want the book to educate people about these diseases, I
also want it to do so much more. The book also has a lot to say
about living life more generally and about the nature of science.
And even pushing all that aside, I want people to read it just
because it's a honking good story!

The "John chapter" (Chapter 17) was the single easiest chapter in
the whole book to write!
  

    
Hah! I'll bet!

Yes, beyond the personal narrative, which is gripping in its own
right, the reader sees the stubbornness of a scientific world which
doesn't want to go beyond "it's all in their heads." The struggle to
penetrate that is one of the biggest issues in the book.

Anyway, I finished it last night, Julie, and delighted in your
success, in your still-skeptical outlook ("this is probably the
source of my disorder; I don't claim it for every CFS/ME patient"). 

I'd guess that understanding is going to take a lot of slow,
incremental research. No big sudden breakthroughs likely, though
that Stanford scientist may surprise us.

And I wondered what had happened to the young woman in Spain you
were trying to help, who was up against such difficult obstacles.  
  

    
I'm so glad you enjoyed the book, Pamela.

Katie is still struggling. She's in Portugal now, and the good news
is that she's gotten a van to live in and that's been working for
her and many of her symptoms have gotten better. The bad news is
that she's got some huge problem going with her gut. This is one of
the really dangerous things that can happen for severe patients:
They become unable to eat. Katie reports that when she eats, it
feels like the food gets stuck, that she can't seem to digest it at
all. She's now less than 90 pounds. 

She's managed to find a cooperative doctor -- interestingly, the
ignorance of Portuguese doctors about ME is serving her well,
because he also doesn't have the prejudice that's totally rampant in
the UK especially. However, I just heard today that the hospital is
shockingly moldy. They were going to do a colonoscopy today, but it
was so bad they had to leave immediately. I don't know what the next
steps will be.

I'm continuing to help her however I can. Her mother just had a
conversation with Janet Dafoe, the wife of the Stanford geneticist
that you mentioned, whose son has a very severe case of the disease.
Their son had this same problem, and became similarly emaciated. He
now has a j-tube that injects pureed food into his small intestine,
and that's allowed him to get enough nutrition, though he still
struggles with constant gut pain. Janet also managed to put Katie in
contact with a specialist here who can consult on her case and
advise her doctor (he's not allowed to advise her directly without
being able to physically examine her). 

I was pleased to be able to contribute in that way, though it's
still really unclear what's going to happen. I continue to feel like
the right thing is for Katie to get to the US, where we have
pristine wilderness that's just not existent in Europe. She wants to
do that, but she feels like she needs to get this gut problem under
control first. 

She's a very special person. I just hope she makes it.

One bit of good news is that when Janet finished my book, she turned
to her husband (Ron Davis) and said, "You've got to study mold." I
think he's serious about it, though in an immediate way, he's too
tied up with his existing projects. But my bet is that within a year
or so, he'll start looking into it. That could be a game-changer,
though of course, unraveling things will take a long time.
  

    
Want to add two more things:

First, I was fascinated by how you trained Frances, first as a
service dog, and then to calm her in Lao's presence. Such a lesson
for us all.

Second, I loved your quick, fresh descriptions of the landscape I
love so well: the Sandias as a "breaching whale" I think you put it,
and O'Keeffe's Pedernal as "a pig's snout." 
  

    
Thank you, Pamela!

When I was working on the O article that's a kind of summary of the
book
(<http://www.oprah.com/inspiration/Julie-Rehmeyer-Mold-and-Chronic-Fatigue-Syndr
ome>), the editors demanded that I not repeat ANY of the language from the book, which was quite a challenge. I had to come up with new metaphors and whatnot for everything. And they ended up pointing out how many animal metaphors I used, and insisted that I stop at two. It was HARD! 
  

    
And I have a question for you guys: So many of you here have
followed my journey over the last decade here on the WELL, where
I've shared my process of figuring things out, my moments of
despair, my meditations about what to make of it all. I'd love to
hear from you about how the book compares to your expectations on
the basis of that. What surprised you about it?
  

    
Here's what surprised me: Your persistence. Even at your lowest, you
kept pushing forward not only against the physical barriers but
against the mental barriers, the difficulty of changing the whole
mindset about what might be possible.
  

    
About mold sensitivity....In the 80's I was having severe allergies
and could not even lay down to sleep. I had to stay sitting up and
continuously spit the mucus into a waste basket....months of this
went on while none of my doctors found a solution.

As it happened I managed a corporate hotel where Pfizer had an
account with us and one of their reps heard about my dilemma and
told me what to tell my doctor and what to take...a new drug they
had just put out on the market..

Fixed in a week.  Turned out to be a hyperallergic reaction to mold
spores coming thru my bedroom window from my garden....also had to
wash down the room and put hypoallegrenic covers on everything...but
it worked.

Sometimes you just get lucky!

Slippage :)
  

    
Julie, thanks for the details regarding your desert journey. It
really is pretty ironic that you went to Death Valley, though I
suppose one could say it was the beginning of the death of the
mortally ill Julie.
  

    
To answer your question, Julie, the arc of the story was much
clearer to me in your book than it has been in the day-to-day
postings. That's surely not surprising. 

And I agree with Joe Flower's point: the persistence you exhibit is
a wonder. Most people would have said, that's it, and caved. You
didn't. Even through all those take a shower and change the sheets
nights.
  

    
The book framed what you'd shown us in your articles and on the Well
in the context of your personal and spiritual history. Thanks for
your openness. This framing shows us where you developed the
strength to do this knowing that while some of us would find it
inspiring others would dismiss your work as over-emotional and
subjective.
  

    
I am amazed by the book. Like everyone else, it seems, I gulped it
down in less than a day. 

One of the big questions that came up for me (among many) is the bad
science. We all know it writ small in the weekly announcements about
how "science" has discovered that coffee is bad, coffee is good,
etc., etc., etc.

But, there are bigger examples: The study that "proved the
connection between autism and vacination--until it was retracted by
=The Lancet= (which also published the PACE study). The
decades-long, horribly wrong experiment in low fat diets, and more.
There is an intertwining of politics, ego, and money that affects
science deeply and perversely. We could say it has been with us at
least as long as Galileo's forced retractions.

What to do? Or do we simply accept that science, a human activity,
is subject to all of the imperfections we bring to it as humans?
  

    
Good questions, Ari. At least we (most of us) know that findings in
science are provisional. You wouldn't necessarily know that from
some of the nonsense that gets published, though. 

The PACE trial was particularly egregious, but I've seen other
studies where, when I actually dived into the statistics, the
findings were barely above the noise level. Or weren't even that. 
  

    
Will be back soon. Yesterday was John's 60th birthday, which was
pretty consuming. And today, I got a nasty exposure that I'm still
recovering from, so I don't yet quite have the brain function. 
  

    
Recover easily, Julie.
  

    
I have articles in my archive from the peer-reviewed medical
literature detailing hundreds of medical science papers that have
been just plain wrong, can't be duplicated, had major mistakes in
them — yet we continue to base clinical medicine on many of them.
The average medical science study is worthless. 

I remember years ago when I presented my paper on the future of
cardiology at the American Cardiology Association I attended a grand
general session where they gave a lifetime award. The award winner's
great accomplishment was the study and paper that established the
idea that what you need for cardiovascular health was 40 minutes of
aerobic exercise three times a week.

I had always assumed that somebody had tested a number of different
exercise regimens over different lengths of time with different
types of people and compared them. I was astonished to find that
this highly-lauded major study did no such thing. The good doctor
just made up the regimen, then tested it on a population of young,
healthy people who did no regular exercise. Sure enough, after a
number of months of doing this regimen, their various cardiovascular
scores improved. No clue whether they could have done it on half the
exercise, or lower intensity exercise, or if it was as good for
older people. No idea. And since then of course it has been roundly
disproven.

It is this that I hope Julie's book has the most impact on: shoddy
science politically promoted.
  

    
Yeah, in my experience it's very common for doctors to be bad at statistics,
with the notable exception of epidemiologists.
  

    
Julie, congratulations on a huge achievement. I just finished it!
What a ride.

Since Lendie beat me to the all-important Frances question...

I'm intrigued to know if you (or Rodale) have had any sense of
newspapers or other media specifically not wanting to interview you
or review Through the Shadowlands because of your robust critique of
mainstream medicine's approach to ME/CFS? I guess I'm imagining a
lot of potentially ruffled feathers.