Reflections on 3 Years of Mold Avoidance

Three years ago on Valentine’s day, I was sitting in a wheelchair at the Elmira airport, waiting to board a flight to Albuquerque. I was battling a serious case of chronic Lyme Disease and wearing an industrial respirator mask because I had developed life-threatening reactions to many foods, fragrances, beauty products and cleaners. 

Through the blessed internet, I discovered the stories of patients in similar situations who had found relief though mold avoidance. It was a crazy sounding experiment but I was rapidly declining and getting desperate. My specialist was running out of ideas and the new doctor I believed might be able help me didn’t have a new patient appointment available for months. 

I needed some hope to reach towards. We decided to try mold avoidance. What was there to lose? Maybe it would buy us some time and keep me alive until I could get an appointment with the new specialist.

This desperate grasp at life turned out to be one of the best decisions I’ve ever made. It’s right up there with deciding to follow Jesus and saying yes to marrying Brett. I’m not joking. I’m not even exaggerating.

There was no way we could have predicted just how challenging and how wildly successful this journey would be. While I never could have known that I’d become comfortable sleeping in the car and hopping from place to place, I have absolutely no regrets. It’s been 100% worth it. 

Others who have also experienced healing through this bizarre quest for better air feel the same. It can be difficult for people on the outside to understand this when mold avoidance tends to create such visible external challenges. Moving repeatedly, facing homelessness, losing possessions, and lacking stability doesn’t sound very hopeful.

But to those of us who have experienced the torment of living in a body ravaged by chronic illness, these things are just inconveniences. All the logistical challenges and ordinary discomforts, are nothing compared to the joy of getting a second chance at life

For the first time in years, I feel safe in my own mind. I’m not afraid to be alone with my thoughts. I know who the real me is. Where there was once turmoil, even agony, there is now peace. I am secure.

For the first time in years, I feel safe in my own body. It’s no longer a torture chamber I long to fly away from. It’s my home. It’s me! The constant overwhelming screams of painful sensations have finally been silenced. I am free to be. My body can once again connect and experience the world around me. 

I doubt words can ever convey the deep gratitude I have for the healing I’ve experienced these last 3 years. I could not even have imagined what it would be like to feel this way. So safe, so free, so alive, so connected. It’s unreal. It’s like finding out you were 75% dead and only 25% human for most of your existence.

Sometimes I just want to skip across the parking lot, do cartwheels on the pavement, sing at the top of my lungs and jump up and down for no apparent reason. And I do it with gusto! 🙂

I feel like this song captures a tiny sliver of my experience these last 3 years. And isn’t it wonderful that I can listen to music again?!

Sunlight
Ain’t it good to feel alright
Ain’t it good to know that you’re not alone
Yeah ain’t it good to know
Cause I lived my whole life
Looking for the light with closed eyes
Ain’t it funny how you fight what you need the most
Yeah, but I can finally feel my soul tonight

I’ve got this wonderful feeling
I’ve got my hopes set high
And after all this time spent chasing my shadow
Let Your light be mine
Let Your light be mine

Come on sunlight prove the darkness wrong
Ain’t it funny how the fears we had last night
Don’t look so scary in the morning light
Come on flowers open up your arms
Ain’t it good to finally step into that light
Yeah and I can feel it in my soul tonight