(For those wanting background on my health journey, this is a post from mid-2018. The post after this one, "Healing I Wasn't Looking For," is the follow-up.)
After a long summer… I’ve finally decided to share my story.
I’ve avoided posting on social media. Partly because it’s been hard, and partly because I struggled to believe that what was happening to me was real. My story is long, but I felt I had to share it in full.
A few days after going on medical leave, Ben and I finished putting together our apartment. It took us a year, but our home was finally perfect! That day felt like my life was finally on track. I had a plan for each day: everything was set for me to rest, heal, and get my health back in the months ahead.
Literally one day later, my world turned upside down. Everything I had dealt with previously came back in a wave that week: mysterious stabbing pains, dizziness, heart palpitations, chest pain, infections, breathing problems, memory and recall issues, and more. With every wheezing breath, it felt like my body was crumbling and my mind was breaking down.
One morning, after being jolted awake by excruciating pain, I had what can only be described as a stroke-like episode: veins were bulging, heart was struggling, mind disoriented, and the left side of my face and body were going numb. But that medical emergency ended up being a godsend: it landed us in the office of the first doctor to help me. After going over my symptoms and noticing a tremor in my hands, I’ll never forget that one simple question: “Have you ever tested your apartment for mold?”
Friends, if it weren’t for that ONE question by that ONE doctor, I’m not sure where I’d be right now. He connected all my symptoms to severe biotoxin illness, and he had us immediately order a mold test on our apartment.
It was two weeks until we could get the results, so we decided to purchase a respirator — just in case. It didn’t take long to figure out that having it on made a difference! One night, after trying to take off the respirator to sleep, another particularly severe reaction set in. We left our apartment in the middle of the night that night, found a hotel, and knew there was no turning back.
The mold test results came back to confirm everything: On a scale of 1-20 (1 = safe, 20 = “drop everything and leave now”) our apartment came back as a 23. We had literally OFF THE CHARTS levels of nearly every toxic mold you can name — most of it living out of sight. It put our apartment in the bottom .7% of buildings in the US.
We spent a good two weeks living out of hotels, trying to come to terms with the reality of losing everything.
Precious wedding gifts had to be tossed. Many of our clothes thrown away. Upholstered furniture, paper, books, and anything porous had to go. I kept thinking of my boxes of postcards and letters. My books. My ART. A studio full of two years worth of art I had never found the time to show or sell in Richmond.
God worked on my heart a lot during that time. Most of us would never consider ourselves materialistic, but the idea of losing everything really exposes just how bound to possessions we really are. What I never expected, though, was the feeling of freedom that followed. Like nothing had a hold on us anymore. Like the things I thought mattered suddenly didn’t.
Shortly after coming to terms with losing everything, our families helped us save a huge chunk of our things. And — like a gift straight from God — my father was able to save and restore much of my art. We found a new apartment and thought the worst was over.
Shortly after moving in, though, things took yet another turn.
We learned I had developed a severe case of MCS (Multiple Chemical Sensitivity). I also had CIRS (Chronic Inflammatory Response Syndrome), POTS, Mast Cell issues, CFS, and more gut infections. And this is on top of PCOS, IBS, and other hormonal and intestinal illness. I was suddenly reacting to not just everything I ate… but everything I touched or breathed in. And just like that, my world closed in further.
I couldn’t spend more than 20 minutes in a store without my body going into shock. Everything — from “natural” soap to new sheets from the store — was causing unbearable systemic reactions. Not just “allergic” reactions like rashes… but whole-body weakness and swelling and chest pain and vertigo. Unable to sleep on our new mattress or even triple-washed new blankets, I spent two nights curled up on a hardwood floor. Suddenly everything I touched, ate, or breathed in became a trigger.
I spent most of my summer sitting in a dustless room next to a $500 air purifier, chained to the apartment. One day I even had spells of vertigo so severe that I couldn’t tilt my head more than a few degrees. I couldn’t read or write without confusion, work on my art without reacting to the materials, or carry a conversation without feeling sick. My husband, on the other hand, like a champ, spent every moment he could triple washing everything we brought into the apartment. When he wasn't cleaning, or cooking, or working, he was holding me — as I sat holding clumps of my hair, weeping… as I cried and shouted and asked God to help me… as I battled waves of symptoms on the floor, fighting to stay conscious.
It felt like I was stripped of everything this summer.
Stripped of my work — the job I loved and had made my identity. Stripped of my home — the place I had made my refuge. Stripped of my ability to eat. My ability to go out. My ability to turn to natural remedies, food, and medicine for healing. My ability to spend time with others. To do anything productive, or creative, or fun. Even to go to church.
Everything normal I never thought twice about… was suddenly gone.
But I can’t tell you the amount of grace we’ve felt during that time. I didn’t feel particularly close to God — actually, I felt far away. But Ben and I kept seeing things happen. We still do. Every time we pray for something specific and small… God is coming through. I think He’s building our faith. And all I can do is give glory to Him for the way He’s taking care of us. He’s not taking away the fire, but He’s not letting us be burned by it.
I don’t have a story of miraculous healing. I don’t have a story of a mysterious check in the mail that covered all our medical expenses. I don’t even have the story of a lawsuit that won us compensation for our losses. But I do have a story of God’s presence. Of God’s just-enough-for-today provision. I’ve come to know Him more intimately as Immanuel, “God with us” — present in the fire, the flood, and the pain. I was hoping to write this post from a place of healing and strength, but I realize that place is a fantasy for many. Our pain will always be a reality, but God will never be a fantasy.
He is here, in the brokenness. Meeting us. Exposing us. Remaking us.
He is breaking our dependance on things that aren’t dependable. Freeing us from the chains of distraction. Trying to get us still enough to hear his tender words of love. And He’s holding us close, even as we try to break free from His embrace.
So where am I now?
I’m still mostly homebound, and every day is still like a game to avoid triggers, but I’m finally under the care of an amazing doctor here in Richmond. We’ve confirmed the mold triggered all the above auto-immune issues. My blood tests also confirmed reactivity to most food (gluten, dairy, beans, nuts, seeds, vegetables and fruits with seeds, beef, eggs, citrus…. and even things like celery, avocado, apples, bananas, garlic, chocolate, and spices!). Yes, all thanks to toxic mold poisoning. But we expect my symptoms to lessen over the course of the next year of treatment.
If anyone has any questions about the specifics of my story (like why I reacted while my husband didn’t) or has been dealing with mold or autoimmune issues, I’d love to talk. Just shoot me a private message.
To everyone who has been lifting up Ben and I in prayer: Thank you, from both our hearts! To God: Thank you for being with us, for helping us, and holding us. You truly are good.