There are also patients who have tried extreme mold avoidance without success at all. Of course, because avoiding mold is so difficult, it’s impossible to be certain that mold or related environmental contaminants aren’t contributing to their illness, despite their unsuccessful efforts. This is exactly what worried me so much when I set out on my Death Valley experiment: No matter how careful I was, it was always possible that I wouldn’t manage to steer clear of the particular mold that had sickened me, hence hindering my ability to draw any conclusions. Had my experiment been unsuccessful, I certainly would not have taken well to strident assertions that I simply hadn’t done it correctly. Unsurprisingly, neither do others. Extreme mold avoidance has thus become controversial in the patient community.
The overwhelming difficulty of extreme mold avoidance is far more problematic for those who commit to it. I was lucky that when I tried, I didn’t require a caregiver or medical interventions, my health outside my ME/CFS was good, I had few responsibilities, I didn’t have kids, my mental state was solid, and I experienced upswings I could seize for my trip. Without these advantages, it can be next to impossible, even dangerous.
This was brought home for me after I befriended a British woman named Katie Steward on Facebook who was severely ill and bedbound. She went to Spain to try extreme mold avoidance—an unimaginably difficult task in that state of illness. As far as I know, she was the most ill patient to ever try it, and I was so moved by her determination that I became deeply involved in helping her, eventually doing everything I could, short of flying to Spain. She’s received clear indications that her body can come back astonishingly quickly when the conditions are right, but she’s found that she is reactive not only to mold but also to fungicides and pesticides that are in widespread use in Spain. After two years of trying to find a location in Spain that would allow her to heal and undergoing horrendous suffering along the way, she’s now trying to get to Death Valley. Every step of her journey has required a fortitude and determination that has awed me, and even so, it’s not clear whether she’ll succeed. It breaks my heart that all I’ve learned isn’t enough to make this process anything close to manageable for her.
All of this means that extreme mold avoidance is one hell of a lousy treatment, as grateful as I am for it personally. Even if mold plays a major role for all ME/CFS patients—an unlikely speculation—we’re not going to cure it by shipping millions of them to the desert.
While extreme mold avoidance doesn’t offer an effective, large-scale treatment for this illness, it does strongly suggest that serious research on the connection between mold and ME/CFS is urgent. We need to find out how big a role mold plays in the disease. We need to know the full range of health impacts that exposure to water-damaged buildings can have, since there are patients outside the ME/CFS community who are also benefiting from extreme mold avoidance. We need to find out how many people are affected. We need treatments that work without upending patients’ lives or requiring impossible feats of endurance. We need the serious risks of mold exposure to be far more widely understood so that people can avoid getting sick in the first place. And all of that is in addition, of course, to the critically needed research that can unravel the basic physiology of this disease and develop non-mold-related treatments.
Nancy Klimas, the ME/CFS doctor who treated me, has now started studying mold in ME/CFS as well as treating patients for it, and she told me that she was convinced to do that in part because of my work. That made my heart swell.
A couple of years ago, I visited Berkeley to see if the “ick” theory held up. The experience was utterly bizarre: It felt as though there were an invisible patchy fog throughout Berkeley, and when we drove into it, my nervous system got crushed. It seemed incredible to me that everyone else around was proceeding normally. I kept asking John, “You don’t feel that???” but of course, he didn’t. Then, a couple of blocks later, I’d feel fine—until the next batch of it. But I was strong enough that the exposure had no lasting consequences.
That experience sheds little light, though, on what I was reacting to, and when I’ve talked to scientists who specialize in the impact of air quality on human health, none of them have reported any special problems in Berkeley. I won’t be moving back there anytime soon, though.
Several fellow patients have gone to see Timmy the Wood Elf. All of them have reported to me that they’ve had remarkable experiences, but as far as I know, the work didn’t bring anyone else significant health improvements. That’s part of the problem with treatments that lie far outside of scientific understanding: They are rarely repeatable or reliable. Interestingly, Timmy gave varying explanations to each mold patient who came to him—his idea that the hypersensitivity was caused by childhood trauma was, apparently, individual to me.
I do continue to focus on my own psychology at times when my health is problematic, as one approach among many. “Psychology” means a lot of different things for me: thinking about my immediate experience in a way that keeps me from feeling victimized and helps me create richness and meaning in my life; revisiting old trauma to see if there are ways to shift my relationship to it and perhaps improve my physical health as a result; working to calm my nervous system’s response to exposure.
I find this work valuable, but it seems to have far less direct effect on my health than avoiding mold does. And when I can’t successfully avoid mold—for example, the skylight in our bedroom in Santa Fe developed a leak in the spring of 2016—it still has a devastating impact. I suspect that my body will always require an unusual level of care and attention.
Although I’ve certainly worked hard to improve my health as I have, I also want to be clear: I got lucky. I could have done everything I did and still be desperately ill. I think I get some credit for my improvement, but only some. A big part of it is simple good fortune.
That also means that I see my relatively good health as a blessing that might be revoked at any time. I have won no exemption from suffering, physical or emotional. This experience has honed my ability to create meaning for myself in any situation, not to resist my suffering, and to appreciate the present moment, whether I’m getting what I want or not. Those skills are ones I treasure, but I also recognize that their powers are limited. I don’t hold myself above any of the desperately ill ME/CFS patients who have been driven to take their lives, including Vanessa Li, Jodi Bassett, Tom Hennessy, Louise Ramage, Tom Jarrett, and many more. I’m terribly sorry to have lost them.
One of the costs of my illness is that it seems indeed too late for me to have a child. I haven’t given up hope completely, but I’ve accepted that if I do get pregnant, it will be a kind of miracle, something outside my control. I’m sad about it, and at times, very sad. Going for a walk up our stream with John and watching him bounce with excitement at the glowing fall aspens as we revel in Frances’s athletic leaps and dashes, I so wish we had a kid to share it all with. And perhaps a child will come into our lives another way, through adoption or just through building a strong relationship with someone else’s child. But I also know that we simply don’t always get what we want, and I’m okay with that. After all, I died out there in the desert. This is all extra, all bonus.
That sense of acceptance is far easier to attain because my life is truly wonderful. Not only do I have a husband I delight in, a dog and cat who bring me joy, a beautiful house I created with my own hands in a magical place, and pretty good health, I am also able to do work that uses my skills and talents and is impacting people’s lives.
I am wildly blessed.
* * *
epi1 Then called the Institute of Medicine.
epi2 The best information about mold avoidance is available at paradigmchange.me. Be sure to check out Lisa Petrison’s book A Beginner’s Guide to Mold Avoidance, which is currently available for free if you sign up for the Rabbit Hole mailing list at paradigmchange.me. In addition, I recommend Sara Riley Mattson’s Camp Like a Girl.
epi3 The Mold Avoiders g
roup
A NOTE ON ACCURACY
The standards for accuracy in memoir are hotly debated, so I wanted to tell you about the standards I applied in writing this book.
I made it as factual as I could. There are no composite characters, no changes in timeline, no intentional embellishments. I was also scrupulous to report my emotions accurately, even when they seemed inappropriate or strange.
At the same time, memory is a soft material from which to sculpt a book. The shocking unreliability of memory has been thoroughly scientifically documented. So I have little doubt but that there are errors of many kinds, large and small, in this book. All I can say is that I’ve done my best.
Also, memory is a fundamentally different thing from a story. For one thing, memory is often indefinite where stories need specificity. I was willing, when necessary, to accept minor details that were likely but not certain. For example, I cannot swear that there were two large brown circles on my white T-shirt the day of the plaster party in Chapter 1, though I can say with confidence that I often had such circles at the end of a day of plastering.
Furthermore, turning memories into a story requires selection. I’ve had to omit many experiences that were important to me but that I decided didn’t serve the book.
I used pseudonyms for a number of people in the book and changed some identifying details. In one case, I obscured the role of an individual at that person’s request.
I relied on both documents and the memories of others to prop up my memories. Although I’ve never managed to sustain a journal for more than a few weeks, I very much enjoy writing long, detailed e-mails to friends, and I relied extensively on such correspondence as the raw material for the book. I checked financial records for dates when I could. I also interviewed friends about their memories of events in the book.
ACKNOWLEDGMENTS
An army of people and institutions have stood behind me in creating this book, and I can hardly describe my gratitude.
Two online communities played a huge role in the development of the book: the WELL and the Posse. The WELL is one of the oldest online communities, and the smart, deep, thoughtful people there have been following my life for nearly a decade, supporting me, brainstorming, commiserating, you name it. The Posse is a small science-writers’ group I started with some friends.
Both groups helped me develop the book starting when it was a distant dream in my Berkeley days and the huge hurdle of daily survival stood in its way. I felt as though I had a cadre of invisible friends behind me all the time, ones that occasionally manifested themselves in the three-dimensional world. My e-mails and posts to them formed the backbone of a large part of this book.
Specific Posse members gave me particular support. George Johnson wrote me an e-mail in 2011 that essentially outlined my book for me. Siri Carpenter was my personal cheerleader through the project, offering incredibly skillful editing of chapter after chapter, listening to me whine, reminding me of my authority at times I felt small and powerless, and just all-around being an amazing friend. Jennie Dusheck read and commented on many drafts and offered her wise, compassionate presence over and over again. Mason Inman was an extraordinarily careful, dedicated, and thoughtful reader, and Jeanne Erdmann offered boundless encouragement and support.
From the WELL, Erin Bow offered clarity and direction at a moment of despair. David Kline helpfully and aggravatingly demanded that I rewrite the stuff about my mother over and over and over, and Tiffany Lee Brown offered me a high vision for my work.
I also received great support from fellow patients and advocates. Tom Kindlon, Simon McGrath, and their crew of merry PACE-destroying men and women were fantastically helpful with the chapter on PACE. Jennifer Spotila and Mary Dimmock offered expertise on the history and politics of the disease along with general wisdom. Eva Fisher’s exclamations and all-caps enthusiasms brought me both smiles and comfort, and Jennifer Lunden was a comrade-in-arms.
The Mapleton Hill book group read the book when it was a not-quite-complete manuscript, and for the first time, I could see the book come to life in the minds of readers who barely knew me. It was a huge thrill that powered me through the rest of the book-writing process. They also gave very useful guidance in polishing the book.
Naomi Lubick patiently read many chapters at the early, “vomit” stage and helped me figure out what the heck to do with them. Lynda Myers helped me reckon with deficiencies in the manuscript. Geoff’s sister made suggestions that deepened my portrayal of Geoff. David Tuller fact-checked the PACE chapter, helped on others, and offered camaraderie. Helge Dascher assured me at a late stage that the book could stand up to an astute reader.
I of course owe a huge debt to the ME/CFS and moldie communities, without whom I wouldn’t have had this book to write. One patient played an especially big role in introducing me to mold avoidance and helping me learn how to do it. I have respected her request not to be included in the book, but my gratitude to her is overwhelming.
My thanks to Erik Johnson, who was an awfully good sport. As much as he annoyed the hell out of me when I visited him in Reno, he also pretty well saved my life—plus, as I got to know him better, I discovered that at heart, he’s a very sweet human being. I promised him that I’d let him read the manuscript before publication, and when I did, he corrected some minor errors but didn’t object to a thing. “I WAS annoying,” he told me. “Knew it at the time.”
I also owe a debt to Ritchie Shoemaker. Though I didn’t pursue his treatments or rely on his scientific claims, he did a tremendous amount to raise public awareness that mold could cause serious, non-respiratory health problems like mine. I also know many patients who have benefited from his treatments.
I couldn’t have sorted out the science without the generous help of many, many scientists. I’m especially grateful to Harriet Ammann, who proved an invaluable guide to the science of mold and was unstintingly generous with her time and knowledge. In addition, Jonathan Lee Wright and Sharon Noonan Kramer provided invaluable guidance as I worked to unravel the history of mold research. Wright made a tremendous effort to bring the issue of mold’s health dangers to congressional attention, and Kramer has worked tirelessly for many, many years to expose the fraud in how the science of mold has been marketed, at great personal expense.
Through the Shadowlands is also the title of a beautiful biography of C. S. Lewis written by Brian Sibley. The story of Lewis’s love for his wife and his spiritual maturation following her death was an inspiration for me in writing this book.
I wrote much of the book while I was a Ted Scripps Environmental Journalism Fellow at the University of Colorado, Boulder. That gave me the time and financial support to write and put the riches of the university at my disposal. Tom Yulsman and Michael Kodas offered tremendous support, ideas, and resources.
My agent, David Doerrer, ably guided me through the whole process, and my editor, Marisa Vigilante, gave sharp, thorough, and thoughtful edits that greatly improved the book.
Portions of the book appeared previously in High Country News, Slate, Aeon, and STAT News, in altered form.
I describe in the book how I felt both orphaned and abandoned during much of my illness, but many people stepped up to support me in all kinds of ways, far beyond obligation. Leonard Miller and Geoff’s parents supported me financially when I needed it. My dear friend Dan eased some of the most difficult moments of my illness and enriched my life for two decades. William loved me during hard times. Patients offered wise counsel, friendship, and critical practical advice. Nancy Klimas and Erica Elliott gave me skillful medical care. William’s brother Gary was remarkably generous and kind. I don’t know how I would have gotten home to Santa Fe when I was at my sickest without my friend Sheila. My former tenant and current friend Bruce heard my groans and helped me into the kitchen trailer many times, among other ways that he supported me.
And then there were all the people who weren’t so close but nonetheless stepped up in moments I needed them: the
neighbor in Berkeley who gave me a ride home when I was stuck; the passersby who helped me up the stairs to the YMCA so I could swim when I’d gotten crippled; the employees at the Fort Marcy gym who would bring a wheelchair out to my car; the neighbor in Santa Fe who got me groceries; and many more.
I thank Llewellyn Vaughan-Lee for his wisdom, inspiration, and energy.
My mother’s love during my childhood has provided a kind of rocket fuel that has powered me throughout my life and has been key to finding my way through my illness. I’m grateful for the support I feel from her—and from my father, though I didn’t know him—to this day.
In telling my story, I inevitably had to tell a tiny bit of my siblings’ stories too. Similarly, I had to describe some of the worst, most vulnerable moments of my ex-husband Geoff’s life. I revealed all kinds of stuff about John. I’m grateful to all of them for their gracious acceptance of this.
My biggest debt of all, of course, is to John, who tirelessly read draft after draft, cheer-led throughout the entire process, cared for me in every way he could, created the most wonderful part of the story, and gives me joy that animates my life. This book is one of the fruits of our love.
ENDNOTES
CHAPTER 3
27 “yuppie flu”: “Chronic Fatigue Syndrome,” Newsweek, November 11, 1990, www.newsweek.com/chronic-fatigue-syndrome-205712.
CHAPTER 5
58 “I would rather have HIV”: “Readers Ask: A Virus Linked to Chronic Fatigue Syndrome,” New York Times, October 15, 2009, http://consults.blogs.nytimes.com/2009/10/15/readers-ask-a-virus-linked-to-chronic-fatigue-syndrome/.
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