What to do when toxic mold chases you out of your home
By Jen Johnson
Anyone who has ever been faced with an unsettling ERMI test knows that when you find yourself living in mold, there are no easy options for getting into a clean environment. Older homes are moldy. Newer homes are moldy. Rentals are moldy. Even AirBNBs and hotels are often moldy.
My book, Destination Blue Sky, is the true story of how my family got out of our moldy home and into clean indoor and outdoor air. Spoiler alert – it wasn’t easy. But it was possible, and worth it, so that my kids (and I) could break free of PANS, Lyme, and mold illness, and go on to live normal healthy lives.
In this post I’ll share my main learnings and takeaways. Maybe it can help you find a safe home, too.
Step 1: Go on vacation. Listen to your body.
Yep, I’m giving you permission. Get out of your home and out of your neighborhood for a while. Go anywhere. Fly to Kona or raid the in-law’s place. Or go to REI and rent a tent and go camping in a local county park.
Chances are, wherever you go will be moldy too. Most places are. But it may be different molds than you have at home, and hopefully different outdoor air than you have at home. That’s what you’re going for.
You may have heard that you shouldn’t take any of your old stuff on a mold sabbatical. Yes, that would be ideal. But the reality is that you just can’t keep buying new stuff over and over again and hope to remain financially solvent in the long run. It’s up to you. Do what makes sense to you.
When we found out we had mold in our home, AGAIN, my brain was spinning. I just wanted to stay home and figure out what to do about it. But we had booked a non-refundable ski cabin, and the kids really needed to have some fun, so I decided just to go. It was a moldy cabin, and we had all our moldy stuff with us. Even so, I found my brain worked again. I had more energy. I was sleeping better.
And then it all came crashing down when I got home again. That trip, more than anything else, clarified to me that my body was not healthy in my home.
So go take a trip with family or friends, or by yourself if you’re an introvert like me. You may not feel any better on your trip away. The most important part of the vacation falls at the end – it’s coming home.
When you get home, pay close attention to your body and your brain. How did you feel on vacation? How do you feel at home? Did you sleep better away than you do at home? Do you find that you forget words, or forget why you came into a room, more often at home? Do you have more aches and pains at home than you did away?
Ask your body to tell you whether your home is safe. If you listen to it, it will tell you, more accurately than any mold test you could buy.
Step 2: Figure out an escape plan.
If your body either whispered or yelled at you that your home is not safe, you have to figure out what to do next. This is not easy.
Your basic choices are:
Remediate. We tried this. We took our home down to the studs and spent a lot of money rebuilding it. By the time we finally got the house mold safe, we realized we couldn’t tolerate the outdoor air, and had to sell anyway.
Find a new, safe home to rent or buy. This is difficult for those of us who have Lyme and who have become sensitized to mold. Most homes are somewhat moldy, which probably isn’t a problem for most people. But for us, we need the needle in the haystack home that isn’t moldy, that we can afford.
Move in with friends or relatives. Same problem – most homes are moldy, even those our loved ones live in.
Move to a hotel or AirBNB. Spoiler alert – most temporary housing options are moldy, too.
Go camping. Yes, this seems extreme, but it’s what my family ended up doing, for three and a half years. I tell the story in my book.
Build your own home from scratch deliberately, free of defects, so it is less likely to get water damage. My husband and I ended up doing this, after failing to find a safe rental anywhere in the western US. My husband had to build it himself because we couldn’t find a contractor to build it right. The book tells this story, too.
Make sure to take outdoor air into account. Before you make a permanent commitment to a place, get out of town, and pay attention to what your body tells you when you come back. At this point in the game, if your body tells you it’s not happy with the neighborhood, it’s not important to know why. It could be mold, EMF radiation, outdoor pollution, automobile exhaust, pesticides, the water quality at home, actinomycetes, endotoxins, glyphosate, toxic neighbors even. Whatever it is, your body doesn’t like it. So now you need to honor that and figure out what to do next.
Step 3: It’s a marathon, one stride at a time.
You just need to plan one day at a time. It will get easier as you go, and the path will become clearer. What step will you take tomorrow? And the day after that?
It can be tempting to panic when you’re faced with mold. I certainly did. But on the other side, I’m here to tell you that there’s no such thing as perfect. There’s only doing the best you can. And little by little, things get better. Here is some hard-won advice I would give to myself back then.
Sort your stuff. Sorting through all of your belongings is absolutely devastating. So here’s my advice about how to make it bearable. Go through your home and pick out the things that you absolutely cannot get rid of. These include important papers and objects with sentimental value. Put all of this in a safe place that it won’t matter if you contaminate, like a storage unit. Only store them with a friend or relative if you will be okay not being able to go back and visit once you get clear. With decisions made about the most important things, it will be easier to sort out the rest. SurvivingToxicMold.com has some excellent advice about how to navigate this daunting task.
Find incrementally better environments. Nowhere is perfect. But there are probably much better places than the one you got sick in. Find someplace that you feel better in than you do now. If there are leaks, fix them and remediate. If that place stops working for you, then find somewhere new. But that brings me to my next point…
Maintain financial solvency. As anyone who has ever dealt with mold can tell you, it is absolutely financially devastating. We lose our homes and most of our belongings. Many of us lose money trying to remediate, then lose money in lost rental deposits or equity, and have to replace everything we own at least once. Many of us move from place to place, breaking leases, as we find ourselves ever sicker. Some of us find we have to build a new custom home in order to find one that we’ll be healthy in. Many of us pay out of pocket for doctors, who acknowledge and treat chronic health issues that have no insurance codes, and thus can only accept out of pocket payments.
One of the reasons my family camped for so long is because it was a lot less expensive than renting a series of moldy rental homes. Campers aren’t exactly known for their quality construction, but we bought it new with a 1.9 ERMI score. Every time we had a leak, we fixed it, tore out water damaged materials, did a remediation clean of everything in the trailer, and rebuilt. Through a lot of elbow grease and a little luck, we were able to keep our trailer safe.
We were able to keep our cars. I had them detailed and ozoned. They started out feeling pretty moldy, but they eventually got better. Everyone’s experience with this is different. But a car is an expensive item, and if you can figure out how to avoid paying for a new one, that leaves a lot of budget for other things.
Healing isn’t linear. Some days you’re going to leap out of bed and feel like you could do absolutely anything. Some days, you’re still going to limp around, sore and brainfogged. The goal is to gradually have more good days than bad.
Give your limbic system some love. Mold panic is real. We live in a world where mold plays a critical role in the cycle of life. It is not possible to get away from it 100%. (Believe me, I tried.) But it is possible to make your world incrementally cleaner and give yourself the space to heal. There’s nothing more stressful than to be told, “Just relax” in the midst of panicking. Give yourself some grace. All you can do is your best on any given day. It’s a tough situation and you’re only human.
My family and I made it to the other side. I hope you’ll join us there.
Jen Johnson (a pen name) lives in Northern California. Getting her family into a clean environment was key to recovering her two kids, and herself, from PANS, mold toxicity, and chronic Lyme disease. For more information, or to contact Jen, please visit her website DestinationBlueSky.com.