As I drove away from Wyoming on my way to North Carolina, I wondered if I maybe I had lost my mind. But at the same time, I felt a strong desire to risk it, to try, to test how big my buffer against the harmful effects of mold was – or, in Moldie terms, how far above the power curve I was. I wanted to be there for the birth of my brother’s baby. For him, for my sister-in-law, for me, and for the baby.
Was it a wise move? Probably not. When I’d talked about it with my dad in April, I’d admitted it made much more sense for me to come in winter. But it was my brother’s baby, the first baby in that generation, and I didn’t want to miss it.
Had I really learned how to manage my mold/biotoxin illness enough to drive all the way to North Carolina by myself, through the humid Midwest and into the humid South? I didn’t know. I thought there was a pretty good chance that I wasn’t well enough at all and somewhere around eastern Nebraska I’d have to turn around.
I hoped because I live at such a high elevation, I would have an additional buffer against mold thanks to all the extra red blood cells I have now. I also regularly hike and snowshoe at 10,000+ feet, and Dr. Shoemaker – one of the most gifted mold-illness clinicians – has mentioned that when we exercise at higher altitudes than we live, our bodies naturally make erythropoietin, a performance-enhancing, healthy chemical.
But I just wasn’t sure. So I kept the trip a surprise from everyone except my husband and the friends I would be staying with just in case I had to turn around.
I was in the middle of some work projects I could do from anywhere. So my plan was to drive down to North Carolina in small stints, staying with my friends along the way, sleeping in my van in their driveways. I figured I could work every other day and in the evenings.
When I got to eastern Nebraska, my eyes starting watering, and that continued all through rural Iowa. The outdoor air in rural Iowa was incredibly tough. Fusarium mold growing like gangbusters in the wake of glyphosate application is not a good thing for me, but my friend Amy’s house in Des Moines felt great! Yay!
My friend Bob in Chicago – who was my husband’s best man and had come to visit us in both Las Vegas and Phoenix when I was still pretty sick – couldn’t believe how different I looked. He even had a copy of Camp Like a Girl all ready for me to sign. He kept saying, “This is so amazing!” about my recovery. He also said, “I’d had sympathy before, but I didn’t have empathy when I visited. Your book helped me understand. And it is SO obvious how much better you feel. It was like you bounced out of your van!”
When I made it down to Nashville with no problems and did really well at my husband’s aunt and uncle’s house, I thought, “Wow. Wow. Wow! I can’t believe this! I really might be able to travel again!”
Driving over the Smoky Mountains, I felt some signature symptoms of one of my most problematic biotoxins, but it passed pretty quickly. At that point I had been traveling for six days. It was June 1st, the due date of the baby, but my brother had texted that there was no news.
That evening, I pulled into my brother’s driveway and immediately knew that his house and neighborhood were going to be tough for me. Darn. I’d really lucked out on the way down there, but his house was no good for me. In fact, the whole town felt much harder. Although, I also worried that maybe I was just losing my resistance to mold and that the drive back home was going to be torture.
So I knew I wasn’t going to be able to stay long, but I hadn’t driven all the way there just to leave.
I knocked on the door, and my sister-in-law Ashley answered.
She said, “Oh, my gosh! I knew you were coming! I just had this feeling!”
She called for my brother, and he came down the stairs, saw me at his front door, and said rather matter-of-factly, “Hey!” He said it as if I were there all the time and had just popped over for a quick second.
Then he said, “HEEEEY! Oh, my God, my sister is in my living room! You’re so tall! You look great! You’re so tall! How did this happen? My sister is here. I need a second to process this.”
(Everyone thought I was taller, so I wonder if my spine has stretched out a little bit from my back no longer being in a state of partial seizing all the time. I really should measure myself.)
My brother’s neighborhood was wearing down my immune system fast, so I had to bolt. Just before I did, I washed my head and changed my shirt for the drive to my parents’ house, two hours away.
But my parents’ house, which is situated on a tidal creek that constantly floods, was not good either. Even sleeping in my van, I really struggled. When I woke up, my brain was mush, and I was in a lot of pain. Another day would have been unbearable, so I had to find another option.
Family came to the rescue! My cousin has a condo an hour away from my parents’ place and it turned out to be great mold-wise! The experts I trust say that about 5% of homes work really well for people who have become severely ill from mold/biotoxin illness. The home has to have good outdoor air and toxic mold can’t have gotten a foothold in the house. Homes like this are hard to find, but my cousin had found one! It didn’t feel as good as our cabin, but it felt really good.
So I spent the next week there. I was grateful for the condo, and it was so lovely to go for walks on the beach a few times a day. But I was heartbroken, too. I’d come all that way, and I couldn’t be with my family. What a bummer.
Luckily, I had lots of work to do. I did one to two mold-coaching consulations a day. I taught Pilates over Skype. I worked on Julie Rehymeyer‘s audio book – a huge project I’m spearheading with about a dozen other patients across the country – in an effort to give everyone a chance to hear Julie read her beautiful memoir, Through the Shadowlands, herself. A few times a day, I took a break from my work to go swimming in the ocean and walk on the beach.
And every morning I sent my brother the message: “Baby?”
He’d reply: “No baby.”
The Baby Comes
My brother emailed me on June 6th that Ashley’s physician had decided to begin the process of inducing her on the next evening, June 7th. By that time I had been away from my cabin in Wyoming for a week-and-a-half. I was feeling it. The day before, I’d gotten slammed at the grocery store, and I was starting to get symptoms that showed I was dipping too far down in the power curve. I was losing my ability to be around mold without reacting. My fingertips kept going numb. I was getting rashes on neck and legs.
I worried that if the hospital were terribly moldy, I wouldn’t be able to be there. I steeled myself up for having to walk straight back out of the hospital, decontaminate, and begin driving back to Wyoming.
When you have this illness, however you manage it, if you do a full crash it can take months to recover. There is no cure yet, but to successfully manage it means to manage your inflammation, keep an eye on where you are in the power curve, and avoid a crash. You want to stay “aloft.”
Erik Johnson came up with the ‘power curve’ imagery from his years teaching hang-gliding. When a hang-glider is high enough on the power curve, it doesn’t take a lot a effort to stay aloft. When the hang-glider starts to get lower and lower on the power curve, it takes a lot of work to climb back up. That is how mold illness is. When you are high on the power curve, your inflammation is down, your neurological system is happy, and you can handle quite a bit of mold. (Although getting to a place where you are high on the power curve in the first part takes a lot of effort.)
I also – because I love birds – like to think about this idea using the imagery of birds. Sometimes being aloft feels easy. You’re like an eagle riding thermals, flapping once every ten minutes. Sometimes it is harder, kind of like an awkward duck flapping a hundred times a minute. But if you crash – oomph! – it is hard to get back in the air. (This is the aspect of managing mold/biotoxin illness that requires fierce discipline…to know when you cannot do anymore and must retreat.)
So I wanted to be there, but I couldn’t afford a to let myself get completely tanked. I just couldn’t.
Tears welled in my eyes as I asked my brother, “If I can’t do this, will you tell your child how hard I tried?”
He said, “Of course.”
I spent that afternoon at or in the ocean, trying to climb a little more up the power curve so I would be able to handle the hospital. At one point, a pelican came and hovered above me for just a moment, eyeing the water below.
I watched it gracefully dive into the water again and again, occasionally coming up with a fish. And this thought came to mind:
No one blames the pelican that it can’t stay under the water permanently. It is just a visitor in the ocean. And so am I, in this place I so want to be, with these people I so want to be near. But for me, this moldy air is like trying to breath water instead of air. If I stay too long, I won’t be able to fly away.
Sometimes I think I am the last one in my inner circle to really accept this.
On the morning of June 8th, I drove three hours to Raleigh, and the hospital felt okay. It was a decidedly okay-ish place. The carpet in the waiting room was a little moldy, but I felt like I could probably pull this off. I really could probably (I hope?) do this! I knew I would need to keep decontaminating to wash away the mold particles. I’d need to keep taking breaks to get fresh air. But I could pull this off!
My mom and dad, my sister-in-law’s parents, and her brother and his wife were all there. As we waited for news, we talked and laughed and told stories about how incredibly strong and full-of-gumption my sister-in-law is.
As the day wore on, whenever I felt my inflammatory response rising, I’d run to my van, shower, and change my clothes. My mom said she almost always noticed that just before I’d say, “Be right back,” she could see my face reddening and a little rash forming on my neck. (I wasn’t aware that my skin did that, actually, but it has been a long time since I was around that much mold.)
So I’d come back to the hospital after washing my hair and changing into a new Hanes shirt with my wet hair tied up in a pony tail, and after I felt like my inflammation had calmed down. I still felt kind of stupid that I had to keep washing away the mold particles to keep from getting too sick. I kind of chuckled about how many pharmaceuticals I used to have to take and how they never even came close to the ability of quick decontamination in their ability to keep me well.
Ashley’s brother smiled at me and said, “It doesn’t make any more sense that a pharmaceutical would work better than what you are doing, actually.”
Yeah. I guess that is true. Still, I was embarrassed. I just couldn’t help it. (I wasn’t embarrassed enough to not do it, but still….)
After two hours of Ashley pushing, her physician finally decided that they needed to do a C-section to get the baby out. Less than an hour later, with my brother standing there by Ashley’s side, the surgeon pulled my baby niece out into the world. They named her Laurel Rose.
Laurel. I have a niece named Laurel.
My sister-in-law had to recovery from surgery before we could go up and see the baby, and the grandparents went up first. Then at 2:30 in the morning, the aunts and uncle were invited up.
We walked into room 314, and there she was – the most beautiful baby in the world. Laurel.
I was still there! I’d driven over 2000 miles. It had taken five showers and five changes of clothes to make it through the day, but I was there.
As I held her in my arms, I couldn’t believe how in love with her I already was. We’d just met, and I was over the moon for this tiny little person. I wondered who she was and who she would grow up to be. What will she see in this world and where will she go? I thought about all the amazing things she would do and learn.
I couldn’t help but selfishly worry: Will she get me? Will she understand why I live the way I do? Will she be in my life even though I live so far away?
Will she love me?
I made a wish that in her hardest days Laurel would remember this story, the story of how we all gathered in Raleigh on the day she was born to celebrate her arrival. Her Aunt Sara had driven all the way from Wyoming to be there. That was how much she was loved by me even before she was born. I hoped she’d understand if I didn’t get to be around very much because I had a serious chronic illness.
And then it was time to go. We all needed to sleep. I leaned down to smell her head, and it was the best smell in the universe.
My throat caught. This baby is the closest I will ever get to having a child, I thought.
I’d been too sick for too long for it to be a possibility for me to have my own child. I am not cured of this wretched illness. I’d only learned how to manage it really well. I thought about everything Ashley had been through to bring Laurel into the world and knew it was a risk I could not take. The last time I took antibiotics, I ended up in a 67-day status migraine.
As I walked back out to the van, my legs ached and my gait was a little bit off. My back was starting to hurt. Nothing too serious symptom-wise (all things considered), but I couldn’t ignore it either.
Runaway inflammation with this illness – sometimes quite aptly called Chronic Inflammatory Response Syndrome (CIRS) is like flipping a switch. Well, I think it is like flipping several switches, actually. And when the switch flips that turns all the anaphylactic allergies, MCS and EHS back to nightmare levels, getting your inflammation back down – and the illness back into remission – is a Herculean task.
So I showered one more time, took two Benedryl, and crawled into my bed in my van that was parked on the top level of the parking ramp of the hospital. I was hurting. I’d stayed too long in the hospital, I knew. It was worth it, though. It was so worth it.
I woke up in my van to the morning traffic bouncing the parking ramp and my bed. I sat up and groaned. Oh man. I pulled up my pant legs and looked at my lower legs. Oof, that is a nice rash.
Sliding off the bed, I groaned. My back and calves ached. I felt tired. And my fingertips were getting a little numb. Still not devastating symptoms yet, but they were a warning. I knew from experience that I was sliding down into a scary place. My inflammation levels were rising. As much as I wanted to stay all day near my brother, Ashley, and Laurel, it was time to go back to my cousin’s beach condo.
So I went back in the hospital, said goodbye, and decontaminated one more time. Then I drove back to the ocean, tears flowing down my cheeks as I pulled onto the highway.
Alone again in my cousin’s condo, I felt a trapped in a state of magnificent agony. I had done it! I’d made it here. I’d made it through the day. I’d gotten to hold Laurel on the day she was born. It was an experience that would feed my soul for the rest of my days.
And wrapped up in that was this realization that I was getting worse. My cousin’s condo wasn’t going to cut it. I needed to get back to Wyoming, and I felt wretchedly angry with Life that this was as close I had been able to get to normal.
Weeping, and knowing I really needed to decontaminate again, I put on my swimsuit, walked out into the ocean, and dove under the waves. Again and again and again.
I started walking, splashing my feet through the surf. I just kept walking and walking. For hours I walked. Every twenty minutes or so, I would dive into the water. Then I’d walk for awhile more.
I thought about my life, about how much of my waking life I’d spent in bed, about losing my ability to read or play music, about the depression, PTSD, the emotional numbness. I thought about how I’d been in pain almost every day for 25 years. I thought about my seizure disorder, about how many times I’d vomited because of this stupid illness. I thought about how terrified I’d become of eating because my throat kept closing from anaphylactic reactions. I thought about being hospitalized and catatonic and waking up after four days to discover I was in a diaper. I thought about how I’d have remissions and I’d burst into the world able to hide almost all my suffering. And then I’d get sick again and retreat, pull back, showing the best facade I could manage, revealing only to a few how much agony I was in. I thought about what it had felt like to be stuck in the dark for nearly 2 months because of that interminable migraine, the one that had made it impossible to hide the illness anymore. I thought about how mold had nearly ended my marriage and how it almost certainly killed my kitten.
I thought about how much my husband and I had given up in order to give me a chance: our homes, everything we owned, our jobs, our city. And how finally – when I’d found the book Erik on Avoidance and decided to give everything I had to doing what Erik Johnson had done – I’d come back to life. Real life. Real happiness. Real contentment. Not the pretend version of all those things that I’d presented to the world – not out of dishonesty – but just because I thought the pretend version was as close I as was ever going to get.
I thought about how I now lived in a cabin I had built myself in a place that supported my health. In that life I’d built there, I no longer was in physical or emotional pain. I no longer needed any medication. I could shop and go to movies and spend all day sitting in a chair in a coffee shop. I could hike and bike and snowshoe and ski. I didn’t worry much about my throat closing when I ate. I never had migraines. I thought about how even though I was tired and a little bit slammed at that moment, I’d actually done this trip. I’d made it here.
Then, with bitterness, I thought: Yeah. That’s just great.
These are things that I shouldn’t even have to worry about! Being grateful that your throat doesn’t swell shut when you eat? That you are no longer stuck interminably in the darkness in agonizing pain? Oh, why don’t you just bite me, life!
I collapsed down into the sand and the water crashed around my knees.
A deep primal scream burst forth from within me.
It was just a scream, but within it was this: I have asked for so little: to be able to breathe, to be able to think clearly, to have a safe place to lay my head, to move through the world without debilitating pain, to feel safe in my own mind. And I am so grateful, finally, to be living a life in which those things all exist. But I cannot deny that I have lost so, so much, and that for so many other people in the world, these things have been as natural to their lives as breathing. Surely, I deserved that too, did I not?
And then I just cried. And cried and cried.
When I could cry no more, I waded back out into the ocean for one last swim, then stumbled back inside. I took a shower, crawled into my cousin’s bed, and went to sleep.
At 3:30 in the morning, I awoke. My fingers were totally numb. So were my toes. The bottoms of my feet were itching like mad. Oh no, that stupid infection clearly got reactivated. My chin just under my lip on the right side was also numb. (But more of a pins and needles kind of numb.) I got out of bed. Oh no, my back!
Crap. Crap. Crap.
I’m running out of time and I still have to drive back to Wyoming!
I wondered if I made it to Nashville – but couldn’t continue – if my husband could fly out and help me. Well, I have to try.
Oh my god, I’m so tired. My legs feel like lead.
At 5:30 AM, I texted my dad. “Hey. Are you up?”
He texted back: “I am now. Are you okay?”
“I need to get back to Wyoming. I’m running out of time. Do you and Mom want to come over and have coffee this morning? And then maybe you could help me close up the condo so I can drive to Nashville? I just have to go. If I let myself fully crash it could take a couple months for me to recover.”
He said, “We’ll be there as soon as possible.”
Then a second text came through. “Here is another idea: I could fly you back home today. And then I’ll drive your van to Wyoming. Happy to do it.”
I read his text and sobbed. Yes. I need to get home. Yes, yes, yes.
I texted back: “Oh my gosh, that would be so amazing. Are you sure? You’d have to get new clothes so you don’t contaminate my van.”
He texted back: “I got you a flight at 4:30 this afternoon. I’ll get some new clothes, come over, shower, and then we can drive to Charlotte so you can catch your plane. You can sleep in your own bed tonight. Do I need to get new shoes, too?”
Three hours later we were on our way to Charlotte. I’d started driving but couldn’t keep my eyes open, so my dad had taken over after an hour. It was hot because I had decided not to use the vents or air conditioner in such a humid and moldy place. I’d actually placed a band-aid over the vent to remind myself not to use it.
I looked over at my dad in his new clothes from Target: a red hipster t-shirt and blue shorts with bright red chiles all over them. On his feet were new flip-flops. When he’d come out of the shower in these non-contaminated clothes, I’d finally been able to hug him. He’d said, “I will always be here for you, Sara. As long as I am on this earthly domain, you can count on me.”
I’d cried and cried and cried.
My mom had said just as we left in the van, “You’re doing so well, honey. You’ve come so far! I’m so proud of you. It’s okay now to say you need to go home.”
All I’d been able to say through my tears was, “But I just want to be cured. I don’t want any of this sickness anymore. I want to be cured.”
She said, “I know. I know. But you are better than you’ve been for so, so long. And you did this, Sara. You were here. It is an amazing thing that you did.”
I took three charcoal on the way to the airport, and when I got there, I took two Benedryl. I told myself that whatever happened, I was only eight hours away from home. Eight hours away from my amazing husband and sweet, beautiful cabin. Eight hours away from safe.
No matter what happened between now and then, all I had to do was pass through time as the pilots flew me through space. I did my loving-kindness meditation: for myself, for everyone and everything on the plane, and for the whole world. When the plane took off and the biotoxins did their huge poof from everyone’s contaminated clothes, I tilted my head down into my shirt to breathe the air around my uncontaminated shirt and fell sound asleep.
I awoke to the pilot announcing that we were expecting lot of turbulence on our way into Denver.
The sweet old lady next to me said, “You slept for three hours, dear.”
She and I talked a little bit, and then the turbulence started. She was terrified. I thought about offering her my hand, but thought that might be weird.
I wasn’t afraid though. I felt calm.
A peaceful – though perhaps odd – thought went through my head. If the plane crashes, don’t push away the experience. Just feel it. Even if it is awful or painful. You don’t want to miss your death, for even to feel something that hard is the gift of this life. It’s not the moments between the pain that make it special. It’s all of it. The pain, the release from pain, the apartness, the togetherness, the connection, the disconnection, the confusion, the understanding, the knowing that one day this will all be over.
It’s all magnificent agony, this life. What a gift it is to know that – to feel it in your bones – before it is over.
My husband was waiting for me at the gate. As we drove out of our tiny airport, five antelope ran in front of our truck.
“The welcoming commitee,” my husband joked.
I stripped down out of my clothes and showered in front of our cabin.
Ahhhh, filtered water. That’s the stuff.
My husband had washed for me some new pajamas, and I put them on.
Ahhhh, clothes dried in the Wyoming sun.
I crawled into our bed.
Wow, this is a nice bed.
Just before I fell sound asleep, I knew I was going to be okay. I hadn’t suffered a full crash. My bed and cabin and beautiful land would pull me up the power curve as I slept.
I’d done a hard thing. I’d walked a brave line. I’d reached out for help when I’d needed it.
The people who loved me now really understood my illness. I finally knew it to be true. To be understood in such a way had relaxed me, had eased my feeling of shame for being the rebel that I am. They knew I was a rebel out of necessity, not because I was a malcontent. They were proud of me for finding my way.
Everything is okay again. Everything is okay.
And then I thought:
Laurel is here.
And I got to meet her on the day she was born.
I got to meet her on the day she was born.
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