A riveting new book by science journalist, patient and ME/CFS champion, Julie Rehmeyer, has just hit the stands. “Through the Shadowlands: A Science Writer’s Odyssey into an Illness Science Doesn’t Understand” details Julie’s illness and its impact on her life.
Her story is likely to parallel yours, the descent into illness; the search for answers in the sacred science and medicine; coming up empty; feeling abandoned to the ravages of disease; coming to terms with new realities; letting go of paradigms that don’t help; venturing into crazy treatment areas despite the logic challenges, fear and embarrassment; asking for help with mixed results; and working to grow emotionally, psychologically and spiritually.
The good news for Julie Rehmeyer is that she found things that help her to feel and function better. The good news for you is that she is well enough to write about it compellingly, in beautiful prose, and with brutal introspective honesty.
Mold avoidance is a key part of her story. She gives a full accounting of her thoughts, experiences and efforts to make sense of it all in her book.
Julie journalistically covers the history and politics of ME/CFS, including the PACE trial and the efforts of patients, including Phoenix Rising regulars, scientists, reporters and herself, in debunking its claims. This both elevates ME/CFS awareness and illustrates the problems caused by bad science dictating patient care.
It is a good read on many levels. I highly recommend it.
I was lucky enough to have the opportunity to ask Julie some questions.
OK, first things first. When you were referring to the forum geeks, were you talking about Phoenix Rising forum geeks?
I was! Phoenix Rising is an amazing resource.
After your Chronic Fatigue Syndrome diagnosis you peeked into and then backed away from “the Chronic Fatigue Syndrome forum.” Can you tell us more about that?
My early response to the Phoenix Rising forum was … not so positive. At the time, I would have blamed my response on what I viewed as unscientific thinking among patients on the forum. But later, when I became frighteningly ill myself and I realized both how little science there was on the illness and how bad much of that science was, my attitude changed.
I realized that patients were forced to explore ideas that hadn’t been scientifically investigated yet. I also realized that initial negative response was driven by something far less noble than high scientific ideals: I was simply frightened by the suffering of my fellow patients, and I allowed myself to sneer at them to avoid acknowledging my own fear. I think I had also absorbed the prejudice of society at large toward ME/CFS patients.
Ultimately, I was ashamed of my own initial response. And at this point, ME/CFS patients are my people. Many patients are such incredibly impressive human beings, finding ways to carve meaningful lives within incredibly strict limitations and with enormous suffering.
At one point, you describe a moment after taking a walk in Death Valley as:
“feeling as will-less as a sack of potatoes, listening to the wind drum the sides of the tent and ring the zipper pulls like prayer bells.”
You studied math at MIT. Mathematical minds aren’t usually prone to writing delicate nuanced descriptions of non mathematical things. How did you become a writer?
I always loved writing, and I’d been dreaming up books I wanted to write since I was a kid. But I also loved math, and I saw many more career opportunities in mathematics than I did in writing. I became a professor of math and the classics, and I adored teaching, but I got to a point where I wanted to do something different.
I spent a lot of time looking at the patterns of what had drawn my energy and excitement over my life, and writing was a strong thread throughout it. So I decided to become a science writer, and I spent a year in a graduate program for science writing at the University of California, Santa Cruz.
Some find science and spiritual beliefs to be at odds. How do you reconcile that for yourself?
I think science and spirituality are only at odds if you have a limited understanding of spirituality — or a limited understanding of science.
To me, spirituality encompasses the aspects of the world that are vastly bigger than humans, things we can faintly perceive but can’t encompass, that which evokes reverence in us. It’s the hidden structure that underlies the world. I think that at its best, science is driven by that reverence, and enhances our understanding of it.
I felt an enormous connection between spirituality and mathematics. Math, too, is a hidden structure that underlies the world. And the process of doing math is surprisingly closely related to the process of thinking about spirituality. I think most people would never guess this, but intuition is perhaps the central tool in making a new discovery in mathematics.
Sure, when you write your proof out after you’re done, you describe the whole thing in strictly logical terms, but you don’t discover new things that way. Instead, you feel your way to a new idea, using a highly-trained, muscular intuition. You spend years working examples, developing a sense of how particular mathematical objects tend to behave. In the process you get a feeling for what should be true.
It’s as if you learn to perceive an invisible structure within mathematics itself, and then you feel your way along these great beams and columns to enter rooms that no one has ever been in before. In a similar way, spirituality is about getting a feeling for a different kind of structure in the world, and using that intuitive sense to guide your actions.
Both spirituality and science became enormous resources for me in dealing with my illness. I describe it this way in my book, talking about the time when I was so sick that I often couldn’t turn over in bed and was out of ideas for ways to get better:
I … felt much as I had back in my math days when I was stumped on a problem and had set it aside, leaving my subconscious to keep nibbling at it as I absently ordered a latte or walked down Mass Ave to class. Then I’d notice a whisper of an idea tugging at my mind, an approach or possibility I hadn’t considered, appearing as if by magic. I rarely felt like Archimedes leaping from his bathtub to run naked through the streets of Syracuse yelling “Eureka!” It was more like some subconscious part of me was trapped in a locked room in a hidden world, inspecting the cracks in the walls and prying at the doors, and it had just discovered the slight jiggle of a loose window. Then I’d return to actively working on the problem, seeing if I could use that slight looseness to break the lock.
Lying in my trailer, out of ideas about what to do, I felt as though I were waiting for that little jiggle. In the meantime, I was mostly just staying out of the way, letting my subconscious prowl around that hidden locked room as I listened to my stream and cuddled with my dog.
My experiences in mathematics were part of what reassured me then, allowing me to occupy the formless moment I was in without terror.
Your dog Frances with her boundless energy served both as a nice contrast to your own energy level and as an element of continuity in your story. How long had you been sick when you got her? How old is she now? Can you talk about what she has meant to you on your journey?
Frances is one of the heroes of the book! I got her four years after I first got really seriously sick with ME/CFS. (I had a gradual onset, so something wasn’t quite right with my body for about seven years before that.) She’s now 7 years old — going on six months! She’s still full of puppy energy and enthusiasm — the world is a very, very wonderful place for Frances.
She was an enormous source of joy and inspiration for me. When I was at my sickest, she spent hour after hour curled up beside me in bed, a tight brown ball of warmth and comfort. And then her puppy energy would take over, and she’d go running around the house, full of flapping ears and pig grunts, making me laugh as she spun out on the turns, her claws scrabbling for purchase on the slippery floors.
Then I had this vision of how she could help me on a practical level, too. One of my most dramatic and frightening symptoms was that I could suddenly get semi-paralyzed. I could be out in public, doing fine, and then find that one leg was dragging, then that both were, then that I could barely move either one. I’d end up as stuck as a mouse in a glue trap, unable to move at all.
So I had this ridiculous but exciting image of training Frances to pull me on a scooter — essentially a skateboard with a brake and a folding handle. I found online resources to teach me how to train her, and it was a fascinating and tremendously satisfying project that I could work on even while so terribly sick.
Here’s a passage where I describe why I found it so meaningful:
I spent so much time training her that I occasionally felt guilty, wondering if that time would be better spent on my work, or on doing something to get myself better (not that I knew what that might be). The image of a skeptical William [my former boyfriend] easily came to mind.
But working with Frances fit my abilities at that time perfectly. She needed short bursts of training, which were all I could manage. When I was too ill to leave home for a week, her training in public could pause without harm. I could think up new strategies even when I couldn’t move. And my fascination with the project made my brain function better.
Plus, working with Frances was the single most satisfying thing in my life. It connected me to myself, gave me something to think about other than my dismal health, provided an outlet for my maternal energies, and gave me hope that I could continue to respond to this illness creatively, even if I never managed to get better. Every time I felt her soft, wet tongue licking a piece of cheese from my fingers, I felt grateful to her.
Training her also felt downright profound, like the process was reworking my brain and my fundamental relationship to the world. The most basic tenet of the dog-training approach I was learning was that the process always had to be fun for the dog. When I’d trained dogs in the past, the word “no!” had always been a fundamental training tool, but I almost never said that to Frances. It was my job to set situations up for Frances so that she’d naturally do what I wanted her to do. I could see the impact this had on her, the deep trust she had for the world, her basic expectation that the world was a wonderful place filled with games and treats and joy and love.
Was it possible that all of life could flow out of easy play? Could I approach my own life that way? Could I train my brain the way I was training Frances’s? Could I, like her, come to feel that the world was a wonderful, gentle place and that challenges were games to be enjoyed that always ended in a treat?
I wasn’t sure what the answers were to those questions, but I did feel the gratitude that I felt working with Frances suffusing my life. Despite my fear about the future, the immediate present had a lot to offer. Even when I was too weak to move—often—I could take comfort in a peculiar feeling of rightness about my life, right there, in bed, in my trailers, on my land, with my dog. I could fling the door open and look out from my bed toward the stream, I could catch wafts of butterscotch scent from the ponderosas, I could listen to the chatter of the birds.
When I thought of everything I wished I could be doing—the stories I longed to write, the hikes I longed to take, the people I longed to be with, the children I longed to have—I grieved. But I found that I could control how hard I pressed against those griefs, allowing them to wash in and out like the tide without drawing too much of my concern or energy.
All my life, an ambition had driven me, a feeling that I needed to accomplish things, to find my place in the world, to make use of all the gifts I’d been given. But those goals and dreams were currently so impossible that their prick had dulled. And I was astonished to find that a gentle gratitude lay underneath, all the time, like a drum beat, like my own heartbeat.
The story of your wedding dress was deeply moving while simultaneously weaving your entire history into the present. How did you come up with the idea to use that specific dress as your wedding dress?
A major thread in the book has to do with how I worked through a sense of abandonment that had dogged me all my adult life. My mother died when I was 18, and I had little family to turn to after that, so I had long felt quite alone in the world.
And of course, the world pretty well abandons ME/CFS patients, treating us with scorn, failing to research our illnesses, often refusing to provide decent medical care or disability benefits. So that aspect of the illness — which is challenging for all of us, I think — hit squarely on my personal psychological vulnerabilities.
Of course, that was extremely painful, but it’s also true that by hitting on those vulnerabilities so profoundly, my illness also forced me to confront them and come to a very different relationship to them internally.
At the end of the book, that issue also shifts because I meet John, the man I ended up marrying, and the book ends in the style of a good Shakespearean comedy, with our wedding. And here’s the story of my wedding dress:
When I was 15, my mother and I were out shopping together, and I was looking at a beautiful white lace dress. My mother came over and admired it, but I said, “Oh, it’s way too expensive,” showing her the price tag for $262 (a lot, since it was about 1987). And my mother said, “Oh, but you can try it on! It doesn’t cost anything to try it on!” And then it was so beautiful that she bought it for me, even though I had no place to wear it and it was far too pricey for a 15-year-old girl.
Then, amazingly, it sat unworn in my closet for 25 years — until my wedding day.
It’s funny, because I’d been married previously, and the first time, wearing it just didn’t feel right. But the second time, it was the obviously right thing to do. It made me feel wrapped in my mother’s love on my wedding day.
What are your highest hopes for this book?
I have high hopes on so many levels for this book!
One thing is that I hope it will change public attitudes toward this illness. I hope that zillions of people will read it, especially including people without any particular interest in this disease. The book really puts the reader squarely inside my head and heart, effectively giving them the experience of being sick themselves. I think that’s got to be one of the very most effective ways to make people sympathetic.
I also hope that it will prick the curiosity of researchers, both about ME/CFS as a whole and about the role of mold in the disease, and the health effects of mold more generally. I think it’s an absolutely fascinating disease, and I hope others will find it so, too.
A third hope is that it will help people think about science in more nuanced and sophisticated ways. I think science-minded people tend to both trust scientific findings too much (not understanding all the ways that science can go wrong) and to be overly suspicious of things that haven’t yet been scientifically investigated (confusing absence of evidence with evidence of absence).
And, on other hand, people who aren’t particularly science-minded can be overly dismissive of scientific findings, or fail to think about their own experiences in rigorous, careful ways, when that would really help them.
And a fourth hope has nothing to do with the illness or with science: I hope that people of all stripes find it wise and inspiring, that it will create a kind of internal spaciousness for them that opens up new possibilities, allowing them to act more calmly and bravely in this world.
What response has the book gotten so far?
So far, it’s been great! I’ve heard from many patients who have found it extremely helpful. I’ve also heard from a lot of folks saying, “I can’t put it down!”
A healthy friend of mine who is in her 70’s said to me, “Your book is stirring me up! My life is OK, but reading your book, I feel like I want to do more with it.” That really made me smile. Another person said he was planning to stay up all night and skip work the next day to finish the book.
I know you are working on an audio version of your book. Why is that important to you and when do you expect it to be available for purchase?
I’m working hard on it! It should be available by mid-June, and I’m really sorry I didn’t have it ready for sale when the book was. It’s extremely important to me to have an audio version, partly because I love audiobooks myself, but mostly because I know that many patients have trouble with reading, and I want the book to be in a form that they can absorb it. I’m recording it now, and because it’s such a hugely personal book, it’s really meaningful to be reading it myself.
Have you experienced any negative repercussions to your work on the PACE trial?
Well, of course, the PACE researchers don’t like it! The main negative impact, I suppose, is that it’s extremely hard work to place stories about the PACE trial, so almost everything I’ve written on it has been the result of enormous, enormous effort.
And of course, I have to be exceedingly careful to be rigorously accurate, which is also time-consuming. So it’s the kind of work that’s personally rewarding and feels like an important contribution, but it’s hard on the wallet, since my time and effort are the only things that pay my bills.
Do you consider yourself to be an ME/CFS patient, or have you moved on from that and consider yourself a mold/environmental illness patient?
I fundamentally consider myself an ME/CFS patient. My illness was primarily triggered by mold, but I used to meet the Canadian Consensus Criteria. I’m also an environmental illness patient, but I feel much more strongly part of the ME/CFS community.
What symptoms are you left with now that you successfully practice mold avoidance?
When I’m successful with mold avoidance, the main thing that is left are some cognitive limitations. Phone interviews, a staple of my work, are hard on my brain, and if I let the conversation go on more than 45 minutes to an hour, I end up with that unpleasant feeling that my brain has swollen and is trying to push my eyeballs out of their sockets.
It can take hours of dark, still quiet to recover if I really do a number on myself. Oh, and I can’t go into really bad buildings, but for short periods, I can tolerate all but the worst.
Lately, though, I haven’t been so successful with mold avoidance, because my neighbor’s house flooded and she made some unfortunate decisions in her remediation process that caused my house and land to get essentially fumigated with mold many, many, many times.
That’s had two really tough impacts: One is that I can’t live in my house right now, and the other is that these repeated exposures have sent my reactivity way back up again. So right now, I’m living in a van, and I have to be very, very careful.
Things are getting better next door, though, and my heightened avoidance efforts are starting to ramp my reactivity back down. Plus, with the book out, I should have a bit more time and space in my life to just take care of myself. So I’m optimistic that all will be well again before long.
Dr. Klimas wrote a recommendation that wound up on the back of your book, saying:
“Julie Rehmeyer’s self-taught journey through the murky world of mycotoxins, which she shares so eloquently in this book, has helped our whole clinical team change our protocols. With the help of the expert training of the American Academy of Environmental Medicine, we are now testing and treating people with mycotoxin poisoning. It is wonderful to see people getting better!”
How did you come to share your experiences with her?
Really just through my writing. I initially saw her as a patient back in 2011, before i figured out that mold was a major trigger for me. We’ve stayed in touch a bit since, and she’s followed my writing. I think she’s also heard about it from other patients, and she’s a good enough clinician to actually pay attention to what her patients are telling her!
Have you tried the mast cell activation syndrome treatments yet? How did that turn out?
I’ve really only dabbled, and so far, nothing seems to have made much difference for me. I’m a little doubtful that mast cells are my issue — it seems more like a toxicity issue than an allergic one — but I’m not certain. The book has been so consuming that I haven’t had much brain-space for experimenting with treatments, plus I’ve felt cautious since treatments can, of course, make things worse. But I’ll explore it some more.
What advice would you give anyone considering trying the extreme mold avoidance approach?
The first two things that come to mind are kind of opposite. The first is: Be really careful and cautious, because mold avoidance is super difficult, and once you start, there may be no going back. The second is: Man oh man, can it yield fabulous results!
The third thing is, learn from your fellow mold avoiders. Lisa Petrison has a lot of super useful information up on her website, ParadigmChange.me. Also, Sara Riley Mattson is an incredible health coach who is a mold avoider herself. Working with her would save a new mold avoider from a thousand missteps.
Are there any resources you would recommend to anyone wanting to explore this topic further?
Phoenix Rising, of course! And ParadigmChange.me. And Sara Riley Mattson, for coaching in mold avoidance. Corinne Segura, if anyone is considering building a low-mold or low-chemical house.
Also, though I never pursued Ritchie Shoemaker’s protocols, many patients affected by mold have benefited from them. I found his books very confusing, but some patients put together an excellent Mold 101 guide that’s available here.