January 31, 2020
By Lisa Petrison, Ph.D.
The mold avoidance experiences of a young Lyme patient are profiled in a new documentary film about chronic illness, called “Becoming Incurable.”
The film depicts the lives of three individuals coping with chronic illness issues.
Included is Sofia Webster – a formerly severely ill Lyme patient in her mid-twenties who has reported being helped substantially by spending time tent camping in pristine locations as well as by using her own reactions to avoid exposures to even small amounts of toxicity in her day-to-day life.
Since the filming of the movie ended, Sofia has continued to experience health improvements and finished her degree from the University of Oregon.
She now is working in a paid position as a social media specialist for Sins Invalid, a disability justice-based performance project based in the San Francisco Bay Area.
“Becoming Incurable” was released in theaters in late 2019 and now is streaming on Amazon.
I found the film to be really well-done and inspiring.
It seems that it would be well worth watching for those considering pursuing mold avoidance and also would be a very good introduction to the topic for family and friends.
Following is a summary of the material about Sofia from the “Becoming Incurable” film.
The beginning of the movie provided a brief summary of Sofia’s background.
Sofia (a light-skinned Latina woman) grew up near Sacramento, California.
She believes that she acquired Lyme disease on a camping trip while in Girl Scouts. The illness was not treated for a number of years, with doctors at first insisting to her that she could not have Lyme because it was not a problem in California.
Sofia attended the University of Oregon in Eugene, where her illness progressed to the point where she was in a wheelchair full-time. She became involved in student activism and had leadership roles in the AccessABILITY Student Union, the Multicultural Center, and the Multi-Ethnic Student Alliance.
Eventually Sofia’s illness worsened to the point that she decided to leave school and return home to live with her parents.
“I was in complete denial that it was getting worse and worse and worse,” she said in the film. “So I did go home and I had to say bye to my jobs. It was like the hardest decision to drop out. I knew it needed to happen, but that still didn’t make it any easier. It was so difficult for me.”
During the time of the filming of the movie, it had been two years since Sofia had been forced to drop out of school.
She said that her parents’ health insurance would cover her until age 26, but that she was concerned about what she would do about healthcare after that.
The next scene shows Sofia taking her morning treatment regimen, including more than 20 different supplements and drugs.
“Although Sofia is treating for Lyme, she also developed other illnesses that coincide with her condition,” the director comments. “In a nutshell, she’s taking anti-fungal medication, pharmaceutical antibiotics, vitamins, and herbal liquids.”
Lyme Support Group
During the filming of the movie, Sofia was facilitating a group for Lyme patients in Sacramento.
“With me, I tried really really hard to do Lyme treatment and be in college at the same time, and it worked for a while, until it didn’t,” she told the group.
Later, she stated about her own health condition, “You know, healing is not linear. Even though I’m doing so much better, I still have a couple of days where I’m still back in that place where I was.”
One tool that Sofia used frequently for detoxification purposes during the recovery process was an infrared sauna.
“I just got out of the sauna right now and I’m already feeling a lot better,” she said. “I can walk.
“When I walked in there, I had to use my cane to get inside the sauna, but now that I’m out, I don’t feel as much pain in my body. I feel like a little bit of joint pain in my hands, but it’s not nearly as bad as it was yesterday or even just before I went in the sauna.
“So I’m already feeling much more renewed and refreshed.”
In the film, Sofia discussed how her then-boyfriend, Esteban, responded with regard to her chronic illness issues and mold avoidance activities.
Explaining how she was dealing with a mold hit from the day before, she said:
“When I told Esteban what happened last night, he asked me, ‘How are you?’ And I said, ‘Pretty bad, I got a hit,’ and he said, ‘Where and from what?’ And I said, ‘T.J. Maxx, reusable bags.’ And he said, ‘Oh, that’s really a shame. I’m sorry that happened.’
“He said, ‘Did you take your detox drops?’ And I said, ‘Oh, I haven’t taken them! Thank you for reminding me about that, I completely forgot about it.’
“I like how he’s level-headed and calm, because that helps me stay level-headed and calm. If I’m doing absolutely garbage-terrible, they he’ll react appropriately. But if he knows this is something that I’ll come out of and will get better, then he doesn’t make that big of a fuss about it. Which I actually really appreciate.”
Sofia explains in the film that she was exposed to toxic mold in her apartment and classrooms while at college and that she now is very reactive to mold.
The director of the film stated:
“Sofia has mold illness, which is known to develop alongside Lyme disease. This means she had to eliminate the source of mold at home and stay far away from it when she’s out of the house….Sofia takes preventative measure the moment that she knows that her body is reacting to mold. But it’s an arduous process.”
In the film, Sofia is shown sniffing various pieces of clothing to see if they are problematic for her. At the end of the scene, most of the clothing has been deemed as too problematic to keep and she has very little left in her room.
“My nose – I get an instant headache when I smell it. It just goes like zing in my brain. Or I guess it’s not in my brain, but right here, in my forehead, it just radiates up my nose and into here. I wish that I could be more descriptive of what it smells like, because I don’t even know what that smell is called, which is frustrating.
“And then I just wash my hair and scrub my entire body very vigorously with soap, including my face. Especially my face, and my chest area, because that’s where I was picking up all those clothes and holding them directly to my face. Now I have to decontaminate and get all that stuff off me so I don’t contaminate my space now. And it’s really frustrating because I have to decontaminate up to five times a day depending on where I go.
“I can only do a little bit at a time because I’m reacting now from all that stuff, so my head hurts.
“I got a bunch of new stuff for Christmas, and my room was looking better, but now I’m down to not having very much stuff. It looks kind of sad in here.
“I’m winded now from doing all that stuff. It wasn’t even a lot that I did, but it was a lot to me.”
Recovering From A Mold Hit
The next section of the film features a phone video of Sofia using an ionic detox foot bath to recover from a mold hit from the day before.
Her beagle, Dante, provides emotional support.
“About 10 hours ago, I got a really bad mold hit at my friend’s house from her kitchen sink, and my whole upper body hurts really bad. Like my muscles are really achy and sore, and my joints and my hands hurt, and just like all my muscles feel very sore. And I’m feeling terrible and I have to wait to eat breakfast because I have these morning pills that I’m supposed to take 30 minutes before I eat. So I can’t even eat and I’m really hungry and I’m feeling just awful.”
Trip To The Emergency Room
Sofia experienced a much worse temporary health setback with severe chest pain later on, during a time that she was camping in a tent in her family’s backyard.
Her mother, Carol Webster, explained in the film:
“She wasn’t feeling well. She was having heart problems – heart palpitations and tachycardia. So she was trying an experiment to see if sleeping out in this tent would help. And it actually did help a lot. She was out here for a couple days.
“Then she suddenly got this intense chest pain. My husband, Hector, tried to pick her up to go to the car, and Sofia didn’t have any strength and she fell down. And he grabbed her by the midline, which was exactly where it hurt the most, and she yelled out in pain, it was just really bad.
“So at that point, her boyfriend called 911.”
After getting home from the ER, Sofia commented:
“My pain was 9.5 [on a scale of 10] last night. I never say 10, because it always could be worse. I still don’t know what happened. I was outside, hanging out with Esteban in the backyard. I don’t understand it at all. It could be pleurisy, but it really bothers me that I don’t have a straight answer as to what’s been happening. So I have to sit with this discomfort of not getting it or not knowing what to do about it.
“If I think about what is happening too much, I get very sad, confused, jaded. It’s hard to live like that, because the pain is so bad that I can’t not think about it, because I’m miserable a lot of the time.
“I thought [last night] that I might not make it. It was that scary.”
The film then shows Sofia and her mother, Carol, spending time in Death Valley National Park, with the hope that it will improve Sofia’s health.
The director commented, “In the past couple of years, Sofia has been making a slow return to nature – the place where her journey with Lyme disease began.”
Sofia explained why she decided to try camping in the desert:
“There’s a school of thought out there for dealing with mold illness called extreme mold avoidance. The protocol is you go to a pristine environment like the desert. You’re working on the assumption that everything you own is contaminated with mold.
“So you buy all new possessions for camping and then you go to the desert or wherever your pristine environment is for two weeks. And then a lot of people report that they get a ton better when they’re in the desert – like night and day.
“I was very, very skeptical that this would work before I left.”
Despite the skepticism, Sofia said that she ended up being helped significantly by her trips to the desert.
Her mother commented:
“Mold doesn’t grow in dry climates, so this environment is a lot safer for her. She’s able to do more because of this.”
The film showed Sofia and her mother hiking in some different areas in Death Valley, including the Salt Flats (pictured above).
“I hiked two miles on my second day, so I’m curious about how much I’m going to be able to do by the 14th day,” Sofia reported during her second two-week trip to the desert.
“I’m making a lot quicker progress than I did very first time. And I had some bad days the first time. I think it was like 10 good days and 4 bad days. Overall it’s been quite good.”
Sofia reported that health information obtained online from other patients had been essential for her to address her illness issues.
“I don’t think I would have gotten my diagnosis without the Internet,” she said. “There’s all this support online. And I think it’s just the best thing that any chronically ill patient can have is a support system.”
Making It Up The Mountain
By her fourth trip to the desert, Sofia was doing much better in general and was routinely experiencing additional feelings of wellness during the camping trip itself.
“Ever since we’ve been doing this, probably after the second one, she hasn’t really needed her wheelchair,” her mother commented. “It’s just amazing how it helps so much. Just staying here for two weeks gives her a huge health boost.”
Sofia said while on a hike, “I’m feeling really good, kind of sweaty but I feel really great. I’m not even tired, I don’t have any of my usual aches and pains. My feet vaguely hurt, but other than that, I’m feeling really good.
“Two years ago at this point, I mean, my whole life had fallen apart. I lost everything. I lost being able to be in school, which I had fought for really hard, and I thought that that was the end and everything was just going to be terrible. And now, here I am!”
At one point in the film, Sofia and Carol hike to the top of a mountain in Death Valley and look out at a beautiful view.
“Every single step I took, it was like, oh my gosh. I never thought that I would be able to hike again in my life,” Sofia said. “And then being up here with this view, with this spectacular view, it’s amazing. Definitely amazing.”
Carol commented later, “I was also in tears because I was just amazed that Sofia came so far and was able to make it up this mountain. And it was just like making it up the same mountain to her recovery.”
Returning To School
In the next section of the film, Sofia and Esteban paid a visit to a nearby college to see if Sofia could tolerate the buildings well enough to be able to take classes there.
“I’m here to test out a few buildings at the local community college because I feel ready to go back to school,” Sofia said. “Not a full load, but to try taking a class, try being a student again. It’s been over two years since I’ve been in school.”
Unfortunately, the classrooms that Sofia was considering had water marks on the ceilings or other visible water damage, and she did not feel good in them.
“I’m pretty disappointed that I have to drop the class,” Sofia said. “I can’t take it, I guess. Online is going to have to be the way to go.”
Later, she expressed some general frustration about the entire educational system, due to the mold situation in many university buildings.
“I still can’t access these things that I want to,” she said. “I still can’t be a regular student and get my degree. I have to do everything online, or, I mean, do this whole trying out thing every single time I want to take something. So it sucks. It sucks. I mean, I’m feeling it.”
Pursuing a Normal Life
In the next scene, Sofia and Esteban mulled over Sofia’s schooling options while her mother Carol summarized Sofia’s present health situation.
“It’s kind of like a roller coaster where she goes down and she gets very sick, but then when she starts getting better, we have a lot of hopes where this is it, she’s going to be better now,” Carol said.
“Sometimes it goes down again. So that’s hard, the ups and downs, reflecting on it. But I do have some hope that she is getting better. And I think that if we continue down this treatment path, that it’s been real helpful, and I think she will end up getting out of this, finally. Or at least finding a way to live with it, where it’s not so devastating when it hits.”
The last scenes showed Sofia meeting with the other individuals featured in the movie.
The director commented, “Chronic illness is a rising health problem in our nation. And when enduring the most unprecedented hardship such as becoming incurable, support is what many people seek. An uncalculated number of people may not always find that. But it’s up to us, as society, to include. Including stories, faces and names that need recognition in a world that may not always choose to see them.”
On December 24, 2019, Sofia provided the following update summarizing her life situation on her personal Facebook page:
In 2010, I was a senior in high school in Elk Grove, CA. I was the flute section leader of my marching band. I would either “march” in a wheelchair or ride in a golf cart up to the parade start point then hop out, do the show, then hop back in the cart.
In 2011, I moved to Eugene, OR to go to school at the University of Oregon. I chose to major in English Literature and minor in Music. I lived in the dorms and had a good roommate.
In 2012, I figured out what was making me so sick. It was Lyme disease. On literally the same day, I went on a first date with a guy who turned into an asshole boyfriend, but was also my only source of access support. I was kicked out of my apartment by my roommates. I found solace in Lyme community.
In 2013, I found the Multicultural Center (MCC) at the Univ of Oregon. I joined the Multiethnic Student Alliance and started learning about oppression, woman of color resistance. I was president of the AccessABILITY Student Union.
In 2014, I got really invested in student organizing. I was fired up and angry about ableism. I started using my wheelchair full time. I was the Co-Director of the MCC.
In 2015, I almost died. I was poisoned by toxic mold and had to drop out of school. I moved back to Elk Grove with my parents and became mostly a hermit. My Lyme doctor called me a “complicated case.” My beagle puppy Dante was a light.
In 2016, I came back from the dead. I fell in love with Death Valley and learned that it’s possible for me to feel something besides like trash. I started reading again.
In 2017, I spent a lot of time in nature. Cosumnes River Preserve, Mercey Hot Springs, Pinnacles National Park, Orr Hot Springs, Joshua Tree National Park, Yosemite National Park, Death Valley National Park. I was in a documentary film about chronic illness.
In 2018, I went back to school, and graduated, and I did it in a way that made education actually accessible for me. I got straight A’s for the first, and only time, in my life. I was an intern for the disability justice organization Sins Invalid.
In 2019, I moved out of my parents’ house. I rented a room in a house in Fremont, CA and transitioned from an intern to salaried staff at Sins Invalid. I started living on my own, independently.
What a wild, beautiful, painful, traumatic, vibrant, pleasurable, full, rich decade the 2010’s have been. May the 2020’s bring gifts of learning and transformation. May they bring me love, tenderness, and care.
Editor’s Note: Sofia asked to have it made clear that she still thinks well of Esteban, her former boyfriend who appeared with her in the movie, and that he is a different person than the boyfriend from college mentioned in her recent Facebook post.
Pursuing Mold Avoidance
The approach to mold avoidance followed by Sofia Webster was pioneered by Erik Johnson and is discussed in the book A Beginner’s Guide to Mold Avoidance.
The book was written by Lisa Petrison and Erik Johnson. It is available for free in PDF format to those signing up for occasional email newsletters from Mold Avoiders.
The book is also available from Amazon in paperback and Kindle versions.
The Mold Avoiders discussion forum is run by Lisa Petrison and designed to help those pursuing the approach to mold avoidance described in the book to get their questions answered.
While anyone can sign up to read most of the material on the forum, only those who have been approved as Mold Avoiders Participants can post or comment there.
The Mold Avoiders Facebook group is designed for more casual conversations among those who are pursuing this approach to mold avoidance. These may include discussions of new articles or videos on related topics; member polls; and participant photos/stories.
The page Mold Avoidance Resources on the Paradigm Change website provides many additional links to materials useful for those interested in pursuing mold avoidance.
Lisa Petrison is the founder of Paradigm Change and Mold Avoiders. She holds a Ph.D. in marketing and psychology from the Kellogg School of Management at Northwestern University.
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