Guess what? We’ve been living indoors for 7 months! I made it through the winter and I’m doing really well. My Pilates coach recently commented on how much stronger I’ve gotten. “You look stronger and you seem like you have a lot more energy!” I beamed because I knew she was right.
I’m not 100% percent yet and we are planning to start sleeping outside in the van just to help me keep healing as fast as possible. I still have occasional bad days but I am pretty close to symptom-free most of the time. I’m hiking, reading, writing, meeting new people, and re-learning how to cook. I’m living life again, all because of a crazy experiment called mold avoidance.
Mold avoidance hasn’t worked this well for everyone and I think there are some key factors that helped me to succeed. I wanted to share them with you in case you’re considering embarking on a similar journey.
1. I learned from the winners.
Brett and I decided early on that if we were going to do something as absurd as mold avoidance we were going to give it our absolute best. This meant that we chose to learn from the winners. We sought out the knowledge of people who had actually gotten results and tuned everyone else out. This affected what blogs I chose to read and how I engaged with the Mold Avoiders Facebook group. Instead of getting overwhelmed by all the conflicting advice, I looked for answers from people like Erik Johnson and Lisa Petrison, who I knew were recovered or mostly recovered. I kindly ignored everyone else. Even more importantly, we hired Sara Mattson to coach us through the process. Her support and guidance was pivotal. We made the commitment to just follow her instructions even if they didn’t make sense to us. After all, she was the one who was well and I was still sick. We wanted to repeat the experiment exactly, to see if we could get the same results. We were willing to do some things that might not have been necessary in order to ensure that I was getting the best shot at recovery.
2. I avoided getting caught up in fear.
Sara’s coaching really helped me avoid developing a strong fear response around mold exposures. Sara believed strongly that panic about biotoxins could play a role in someone getting stuck in hyper-reactivity. Because of her help and Erik’s story of calm experimentation, I was able to approach mold avoidance with the expectation that my reactivity would eventually begin to subside. I wouldn’t always have to be so careful about small exposures and cross-contamination. I would eventually be able to go into a moldy building without suffering life-threatening consequences. That’s not to say that I don’t believe toxic molds are actually harmful. I never want to live in a moldy building again. I wouldn’t want to move back to Portland either. But I’m well on my way to being able to live a normal life in South Dakota.
3. I didn’t try to avoid mold while I was still in a bad location.
We didn’t try to do mold avoidance in Portland or Ithaca. We decided to, at least temporarily, believe the more experienced mold avoiders when they said that certain locations were particularly problematic. They said that certain cities seemed to have a micro-biome that was so out of balance that toxic molds and cyanobacteria were thriving in sewer systems and buildings all throughout the area. They thought maybe it had to do with man made chemicals altering the microbial-balance of entire regions. I don’t know if the theory is correct but it definitely seems plausible. My experiences certainly convinced me that location matters and that it’s a lot easier to recover from chronic illness in certain places. If you are living in a bad location, extreme mold avoidance with consistent decontamination will seem almost impossible. Indeed, it might drive you crazy. Mold avoidance is much easier when you’re willing to leave civilazation behind for a while. We chose to camp in pristine air and I give the clean air the majority of the credit for my healing.
4. I let go of my possessions.
Our situation was desperate enough that we didn’t think twice about leaving our stuff behind. I didn’t bring anything from the moldy apartment except my glasses, our phones, and Brett’s computer. Even though our phones were in plastic bags and Brett only used his computer outdoors we eventually had to replace those too. We replaced them when it became clear that they were a problem for me. I think a lot of people shoot themselves in the foot when they start trying to save things. Losing your belongings is painful. It’s okay to grieve over that. One helpful idea is to leave the things you just can’t part with in storage. It’s financially scary to toss furniture and small kitchen appliances but it gets easier when you realize you don’t have to replace everything (at least not right away.) We don’t have a table or a couch right now but I have restored health. I sometimes miss the Vitamix, the makeup, the yarn, the crochet hooks and hair styling tools but I’ve gained so much more than what I’ve lost.
5. I avoided buildings altogether for a few months.
This was only possible because I had the loving support of my husband Brett who did all the shopping for us. I was also willing to dig holes to use the bathroom. I don’t think avoiding buildings was necessary to my healing but I think it played a role in speeding it up and preventing me from getting stuck in the extreme reactivity. I wasn’t getting exposed as often which meant my body had more energy to detox and heal. It also meant that I wasn’t having severe allergic reactions as often as I would have, which meant I wasn’t giving my body as many opportunities to develop a fear response to mold exposure.
6. I didn’t go it alone.
I had the emotional and financial support of friends and family. Most of all, I had the unconditional love and care of my husband Brett. I didn’t have to go out into the wilderness all by myself. I had a caregiver. I know not everyone is as blessed as I was and that saddens me deeply. A support system is important but be encouraged that you don’t need one that looks just like mine in order to succeed (Erik Johnson went out to the desert by himself!). So don’t be afraid to reach out for the support you need and remember that people don’t need to understand perfectly in order to care. Perhaps sharing my story will help friends and family to see why mold avoidance might be worth trying. Maybe posts like Explaining Chronic Illness to Healthy People and Why I Chose Mold Avoidance can do some of the talking for you.
Those first few months of mold avoidance were extremely difficult but I’m so glad I stuck with it. I never could have imagined what it would feel like to regain so much health, strength and freedom. I know not everyone is able to pursue extreme mold avoidance but I think many would be surprised what a difference it would make to just start over in a new location without bringing any belongings.
By the way, Brett and I made a beautiful PDF of my favorite resources for suffering souls. I created the content and he made it look fancy with his superduper graphic design skills. It’s available for free to my email subscribers. Click here to sign up and receive 5 Resources for the Suffering Soul.
A note for for my especially observant readers… yes, this post was first drafted almost three months ago. 🙂May 31, 2018 at 1:16 pm
Ana, so fantastic to hear your progress and that these 6 steps/protocols made the difference in your healing. It’s so important for others to see and hear what has worked.May 31, 2018 at 4:27 pm
Thanks Ellen!June 1, 2018 at 1:01 pm
How do you think things would have turned out if you had to do it alone?
I often think about this when I see people who recovered and had a strong support system. I don’t really know of anyone who recovered greatly who didn’t have at least some kind of support from friends and family who helped them out when they were too ill to take care of themselves. I confess sometimes I feel envy of how much easier it seems for them.
I feel the feelings of social isolation many of us experience and the fact that we constantly have to fight for our basic rights and survival alone, often against the very people who were supposed to care for us, take a heavy toll on our healing, apart from the sheer difficulty of trying to avoid mycotoxins without any practical help from someone else.
It has been two years since I started avoiding mycotoxins to improve my health. I have come a long way, but I know I could be much more healed right now if only I had had the necessary support. The intense stress I experience from this immense abandonment from those who were supposed to be closest to me damages my body daily.
Is there anything you can say to those of us in this situation about how you think we could lessen the challenges it brings and we could help our bodies heal faster?June 1, 2018 at 3:50 am
Thank you for sharing your thoughts and experience Sara. It is so heartbreaking and infuriating that so many have to suffer abandonment on top of everything else. It grieves me deeply and I don’t really feel like I have a good answer. In all honesty, I think I probably would have died a long time ago without the support. What you and many others have done to go alone has taken vast amounts of courage. Courage I don’t think I would have had (though when our lives are in danger we may surprise ourselves). If a person has money or can get financial help, I would definitely consider hiring someone to help with caregiving and practical things. But I think that is out of the question for the majority of mold avoiders who already spent all their money on other treatments and need the rest for food and lodging. I don’t think there is an easy solution to the problem and the stress that it creates. 😢 But I would always encourage everyone to keep asking for help from friends and even strangers. There are a lot of cruel people in the world but there are many good ones too. I pray you will continue to heal. 💕June 1, 2018 at 1:00 pm
Thank you for your answer Ana.
I also thought I would die without help, that is why I stayed so long in an abusive relationship because I didn’t know how I could keep surviving otherwise.
But when the violence in that relationship escalated so much that that in itself was threatening to kill me I knew I had to get out one way or the other or I would not live.
If I hadn’t found out about the role mycotoxins were playing in my illness I probably would have died because I was too ill to even cook or digest the food I was trying to eat.
But once I found the path to healing I was able to keep myself functional enough to survive by myself and I discovered that the human body can endure a lot more hardship than I previously thought possible.
I hope that the work you do will help spread the word about mold illness and about how people can heal so that family members and friends can become more supportive of their loved ones.
Thank you for sharing your story with the world <3June 1, 2018 at 2:18 pm
YAY, I was sure missing you. What a joy to hear from you.June 1, 2018 at 8:19 am
😊June 1, 2018 at 1:04 pm
Thank you for sharing your insights! So happy that you’ve improved so much in the past year!June 1, 2018 at 10:37 am
Thank you so much Jen!June 1, 2018 at 1:04 pm
Yes, so encouraging to hear your story and know that it is at least possible to heal! Thank you for sharing.June 2, 2018 at 1:21 am
Its great to see a new post from you Ana. Your blog has given me some great insight into mold avoidance, and I certainly agree that fresh air is like medicine:) Thanks for sharing your journey.June 4, 2018 at 10:41 am
Ana, I agree that having the support of family members can be the difference between life and death. I was not blessed to have a caregiver husband like yours. I was abandoned by my husband after I got sick from mold. I have been on my own like Sara Tamames. However, I am blessed to still have a job, so I was able to move to a clean environment and continue to work at home. I think that is why I have survived this far.June 5, 2018 at 10:21 pm
While I do not struggle with Lyme or adhere to mold avoidance, I do struggle with chronic pain (Fibromyalgia) so I enjoyed reading through your blog. It’s nice to know we are not alone in our struggles. Hope you have a great day. 🙂July 12, 2018 at 2:51 pm
Ana, this is so awesome!! I loved reading this! It was challenging to me, especially the part about “letting go of possessions.” Thank you Ana!! I’m continually praying for you guys! Love you bunches!!August 20, 2018 at 2:27 pm