This is the second portion of this story. Find part one over here.
A warning: includes depictions of chronic illness & depression.
26 years old, a May morning
I’m sitting in a bland, blue waiting room at a OBGYN’s office, feeling mysteriously but acutely hopeless.
There’s no event that would cause this hopeless. No disappoint. No pain. Nothing cataclysmic occurred. The hopelessness and disorientation came on swiftly, without a clear cause, several days ago. I’ve been crying ever since. And when you cry for days on end—or even a whole day—it turns out your eyes swell up and you get a severe headache. Who would have thought? Per the headache and subsequent nausea, I’ve been unable to eat much. I also just don’t have an appetite. I’ve been sobbing, not eating and hardly sleeping for about seventy-two hours. The final straw was chest pain that spread to my left arm. That sent me to Urgent Care.
And at Urgent Care they told me the cause was my IUD.
I’ve only just had the hormonal IUD placed recently. The hormones—a synthetic form of progesterone—seem to be tormenting my body and brain. Within a few hours of my first cycle since it was placed, I was plunged into the darkest place I’ve been mentally, and I’ve been some dark, dark places. I cannot be left alone—I begin to question whether I really exist if I am. I cannot stop crying. I consider not being here any longer. There’s nothing to explain this except the IUD.
A nurse calls me back to the exam room.
When the IUD is removed, I scream in pain. I vow that I’m done with hormonal birth control because I can’t risk something like this again. But this means I have to figure something else out.
When I’ve recovered—after a week of smoothies full of berries and maca and binging Mrs. Maisel—I start reading more about the idea my roommate mentioned years ago: that you can’t get pregnant every day of every month. Somehow, you can figure out when those times are when pregnancy simply will not happen.
A few weeks later, I’ve received no follow-up from the GYN’s office so I call them. Eventually the GYN herself does call me and is nonchalant at best, accusatory at worst. There was no way, she says, it could have been the IUD that caused my symptoms. I should have left it in and waited it out. She says nothing about the thousands of lawsuits against IUD makers, or the thousands of people who allege these devices have harmed them.
But I don’t know about any of that yet. So I tell the GYN very clearly, if I had left it in there’s a good chance I wouldn’t be here anymore.
26 year old, a July afternoon
I’m on a rocky beach in Maine, alone. It’s a quintessential coastal day: grey and foggy. Despite being so glad to be here, in my favorite place, I am…not here. I try to write in my notebook, and sketch plans for my novel (set in Maine). I try to take in the sea air. But something about me cannot settle. Something doesn’t feel safe. I can’t think straight. Something is about to fall apart and I know it without knowing it.
26 years old, a September afternoon
I’m sitting at my dining room table. It’s the afternoon and the light is like champagne. Shadows from the trees outside dance on the wood floor. This will all be burned in my memory later. I’ve just found out I have Lyme disease.
The news came in via a good ole health portal on my iPad. I didn’t even know the doctor I’d seen a week before had ordered a test for Lyme. I’d gone for other bloodwork after seeing her but I didn’t even know this was in the cards. I’d gone to see her—a new doctor—because I felt like my heart was pounding and I couldn’t breathe properly. But my heart rate was normal and my blood oxygen was good. And for some reason—perhaps because I mentioned I’d just been in Maine—this doctor quietly ordered a Lyme test.
My whole world shifts. This is the diagnosis I could feel coming on for years and years. I am actually sick. Diseased, in fact. I can suddenly feel the length of the road ahead of me. I’ve been afraid of Lyme for years—as someone who lives and visits two tick capitals of the world you hear a lot of horror stories. And now I have it.
Come evening, I take the first dose of an antibiotic that’s been prescribed to me to kill the Lyme. It’s a tiny blue pill, the same color of the vintage turquoise earrings I got at a small sale I went to this afternoon, just after getting my diagnosis. After swallowing, my husband and I take a walk around our neighborhood.
Within forty-five minutes, it feels like the pill is killing me too. It seems I have to consciously keep my heart beating and my lungs inflated. It feels like experiencing an exorcism, which I suppose isn’t far off from the truth. But what’s being purged? The Lyme or me?
27 years old, a November evening
I’m at home, on my couch. That’s where I live now: on my couch. I quit my job at the community college library because I can’t leave my house reliably. There’s always a good chance I won’t have enough energy to cope and I’ll turn into a puddle of panic. I’m still not convinced my heart isn’t about to give out and I don’t trust my cognitive skills enough to drive. And I’ve already missed several weeks of work because I was too sick (plus, the library is empty so I’m not actually needed and that hurts too…).
I finished taking the antibiotic for Lyme a few weeks ago. I should be “healed” because the Lyme is, in theory, gone. Now though I’m sicker than I was before. It all gets worse when the sun goes down. Everything constantly feels unreal, like I’m trapped in a slow moving film. When the sun goes down, I feel closed in; suffocated in a lack of hope. My mind is a prison.
When I can manage it, I search for answers because I cannot stay this way and the doctor I was seeing has nothing else to offer. She knows of nothing else that will help me. Maybe I don’t search well but I search. I find something interesting and my husband finds the scientific studies. He dissects those and will someday become well versed in them.
We try something new. Eat this way, take this, don’t eat that. I try expensive probiotics. I try milk thistle. I try 5-HTP. I try quercetin… It goes on like this for months.
27 years old, a June afternoon
I’m at home because we all are. There’s a global pandemic. Even if there wasn’t one, I would probably still be home. I’m still not employed. I’m non-functional until noon and only semi-functional after that. My health is at its lowest point so far. After what I will later realize is a mental breakdown, my husband makes an appointment with a functional medicine doctor we only barely afford.
I have just three things to hold on to:
Somehow, in the midst of all this bleakness, the idea of naturally dyeing clothes catches my attention. I get a book and begin to teach myself to dye with plants, flowers and food waste. I’ve dyed two little onesies for a friend’s baby. I post pictures of what I’m dyeing on social media and it gets more engagement than anything I’ve ever done. Figuring out natural dye techniques is often my only reason to get out of bed in the morning; I’ll literally pull garments out of overnight dye pots whilst still in my pajamas.
So of course this must become a business, I think. People love my dye work so I should monetize it. Plus, I’m not employed. I should be doing something to make money. (Though we do have the incredible privilege of being decidedly fine without my contribution.) Dyeing things at home will give me the freedom of running my own small business. The dream. What other rationale is there in 2020?
Maybe dyeing can be my “thing.” Maybe, I think, maybe this is my calling.
The second thing keeping me afloat is my therapist, Teri. I will only ever meet her through screen, but she changes my life.
Thirdly, I’m still writing online. And people are both attacking me and telling me yes, me too!
But my novel. My novel! I must write my novel! I’m taking the pandemic as a call to dive deeper with that. It’s time to just do it. It’s time to finish that manuscript! I interview people whose experiences can help me flesh out the reality of the story. I try writing the opening again and again and again.
28 years old, a November morning
I’m laying on my couch again, after a visit to the ER that turns out to be because of a panic attack and another mental breakdown. The functional medicine doctor helped in some ways and hurt in others. His approach to food sent me spiraling back into restrictive eating and I suspect he did not get to the root of my issues because the last few months have been horrible. I can function before noon but there are still so many mysterious symptoms and I’m still unable to live normally. Leading up to the ER visit, I barely slept or ate for several days and I went in for “tachycardia.” All the (incredibly expensive) bloodwork and testing says I am “fine.” What a slap in the face.
I’m told to follow up with my doctor after the ER visit, but I don’t have one anymore. So I get a new one and (because of covid) we have a phone appointment. And this new doctor who I’ve never met says, in a sweet West Virginian twang, that it sounds like I’m playing whack-a-mole with symptoms. “Let’s stop playin’ whack-a-mole here,” she tells me. Let’s get you well.
Her name is Angie and someday soon, during our appointments, we will lovingly finish each other’s sentences. We will get on like a house on fire and she will save my life.
28 years old, a February evening
I’m bathed in the blue glow of my computer monitor, having just gotten off a call with the pastor at the Presbyterian church I’ve been attending for seven years. For several months now I’ve been seeing the church and reformed theology in a different light. One of the things that made me realize something was off was that it finally occurred to me that women could not be ordained in our denomination.
In fact, women hold no official power in this church or denomination. I’m currently in one of the highest positions of leadership a woman can achieve: Head of Hospitality. I’m in charge of snacks and coffee. And I take it seriously, but that is all the power I can have. When I look deeper into the theology, I see why. And it makes no sense.
I’ve just told the pastor—who was a dear friend and confidant—that I’m done. I don’t want the position I’ve been given. I can’t stand the way the church treats women and marginalized people, who he calls “the poor.” He doesn’t understand my position. He and I will barely speak after this. I’ll lose an entire community.
I can’t ignore what I’ve had my eyes opened up to in the past few months: how oppressed women and marginalized people are within the church and the culture at large. How our individual congregation and pastor perpetuate this. This was never something I was much concerned about before. In the past few months, I’ve been woken up to inequality and activism. Now, I can’t look away.
28 years old, a May afternoon
I’m laying on a massage table in a room lit by only purple Christmas lights and star shaped lantern. Julie, a bodywork therapist trained in craniosacral therpay, cups the back of my head with her hands. I weep and start to live in my body again, instead of just my brain.
Somewhere in the midst of these past few months, two different doctors have wondered if I’m autistic. I take multiple online tests, which says I am, but I can never justify the cost of a real test. This is, however, the best explanation anyone has given me for why I experience the world they way I do.
I’ve also opened up a little shop finally, selling my dyed things. I’m giving it all I have, which is not as much as I think I should be giving it. My imposter syndrome is running wild but it feels like this is my only shot at making money right now. And not just making money—making my way in the world. I must contribute something; I must have work that is mine.
So I leave my session with Julie and go stir giant pots of dye for hours and hours until bed.
28 years old, the afternoon of June 28
I’m sitting on the front step of my house. Over the phone, a nurse from a specialist’s office gives me The Diagnosis: microbiome dysbiosis, a candida infection, and pancreatic maldigestion. I start crying and tell the nurse she has given me news I’ve been waiting years to hear. This feels like the missing piece I’ve long knew was there.
The Diagnosis: there is something wrong with me. It’s not in my head. It’s not my fault. And I can heal from it.
I never take selfies, but I take a picture with a silly Instagram filter because I know I will want to remember this moment and this joy.
28 years old, an October evening
I’m in a little Airbnb that feels like a treehouse in Brunswick, Maine. I’m on an online class because I’ve finally bit the bullet—I’m going to learn how to do fertility awareness. This has been tugging on my attention for several years—each time the teacher, Clara Bailey, offers her Moon School in the fall and spring. Now finally feels like the right time. I was able to afford the class because of my dye business and my mind feels clear enough that I can take in the information.
I start charting and fertility awareness, menstrual cycles, reproductive parts—it’ll all becomes overwhelmingly fascinating to me. It’ll make my body and the world make more sense. For the first time I find beauty in my female body and experience. This isn’t a liability. This isn’t weakness. This isn’t dirty. This is a gift.
29 years old, a December morning
I’m at a little Christmas market on a cloudy day. I’m here selling my botanically dyed wares: upcycled garments, onesies, kids t shirts, baby socks, silk ribbon, bandanas. People love them. My business is doing well.
But something doesn’t feel right. I’m not handling the stress of production well; I’m starting to understand why so many “big dyers”—folks in the botanical dyeing world who I look up to—have shifted to teaching classes rather than producing products. The massive pots of dye, the stirring, the yards and yards of wet fabric, the time it all takes… It’s a lot.
With dyeing, I constantly feel like I’m behind or rushing. I’m in panic mode. And I feel like a fraud, despite knowing what I’m doing.
I’m starting to wonder: maybe this isn’t it?
But what else can I do really? I’m still struggling to function. Sound, lighting and temperature give me constant trouble. I can’t go into a store without feeling like I might topple under the fluorescent lights. I’m never not cold. Deep, rumbling noises (which are surprisingly everywhere) make it feel like my brain is rattling in my skull. It seems my experience of the five senses is incompatible with everyday life.
29 years old, a March morning
I’m sitting on the kitchen floor of the home where I now work. A month ago, I took a very casual job as a caretaker for some acquaintances and their two small kiddos. It’s a sort of nanny-like situation but I also do housework; I’m an extra set of hands and eyes. Both this family and I needed this—they needed the help and I (after two years of a pandemic) needed to get out of my house. I’m well enough finally that I can manage this: a few days a week, fifteen minutes from home. And I’m finding so much joy in it. In several years of sickness and isolation, I’ve missed the simple acts of caring for others like I used to.
It’s still a challenge. I’m sitting on the kitchen floor, mid-cleaning, whilst the kids are in the other room and the parents are working elsewhere in the house. My heart isn’t racing but it feels like it is. I’m breathing and trying to get it under control. This is largely what I live with at this point. I get throbbing feelings, feelings of panic, chest tightness. There isn’t a day where I’m not afraid I’ll pass out or that there’s something, somehow wrong with my heart. Is this logical? No, but I can’t shake it. It impedes everything I do.
I watch my heartbeats on my AppleWatch. I’m constantly looking at my AppleWatch—it’s my only reassurance. 86bpm is ok, 78bpm is ok… I tell myself. It’s probably just acid reflux, I remind myself. (I have a lot of acid reflux.) So I take a sip of chamomile fennel tea I carry with me like a security blanket—it’s the only thing that does it for me.
And then the smallest kiddo, just two, comes into the room. We draw on the chalkboard wall and it distracts me enough to keep going.
29 years old, an April evening
I’m sitting at my desk with a candle light. I’m letting my novel go.
I’ve realized I don’t want to write a novel anymore. The world doesn’t need this novel from me; it doesn’t need all those trees cut down for paper or all those solvents and pigments used for ink. I don’t want to leave my husband and cats to travel around, promoting a book. I don’t want to promote a book on social media or anywhere else! That would be the future if I was published and I don’t it at all.
So why continue? It is not the worst thing ever to have an unfinished novel left in a drawer when you die. The worst thing is not being present in your own life. For so long, I was living for my novel and all future novels. Experiences would be mined, not lived. I was living for the life I could have as a novelist. I was leaving the present moment constantly, yearning for the life I could have as a published author of some book the world didn’t need.
So it’s done. And because I’m me, I say each characters name and I thanking them for being my companion through these years. Then I tell them: Go in peace.
A few weeks later, I close my online shop of botanically dyed goods. In the first year I made money, which I can hardly believe. But it’s become too much of the wrong things.
I’ve been getting introduced as a dyer, or people recognize me around town as the girl who does plant dyeing. Each time it feels wrong. No, no, that’s not me, I find myself thinking. Yes, that’s a thing I do. But that isn’t Who I Am. It isn’t people’s fault that they say this; it just makes me realize something isn’t right. This doesn’t fit in my life.
Who am I though? What am I doing? Why does it matter? Have I wasted too much time with these questions?
What happens next?
30 years old exactly, an evening in early October
It’s my thirtieth birthday. I know what I want now and, maybe for the first time, I write it out clearly in my journal.
For the first time in a long time—maybe in over a decade—I live peacefully in the world and in my body. My body feels good and my mind feels clear. I don’t constantly look at my AppleWatch, worrying my heart is racing. Sounds and lights don’t hinder me. After months of supplements, probiotics, garlic therapy, and a diet protocol it feels like I am ok. I breathe easier. I sleep better. I can leave the house without panic.
I’ve been working for the little family. Sometimes it’s chaos but the work feels good. It’s undervalued work, for sure: cooking, cleaning, watching kids, folding laundry, errands. But this feels like the most vital work I’ve done. I’m not recognized as I was with my dye work. No one comes up to me and says, “Are you that girl that can clean up a kitchen so it’s spotless in an hour?” But this work of caring feels more true to myself than creating tons of dyed pieces for people to buy, or trying to write a novel, or even working in a library.
As I stand in the laundry room of the big old house where I work, I find myself thinking about what feels like a mythical time when we “lived in villages.” Did we all know this work of sustaining life mattered then? Did women really slip in and out of each others houses and lives, sharing the load of keeping life going together? Did we spend the majority of our days care for each other?
Maybe. Maybe we did. So maybe that’s still possible.
For tonight, I dare to put down the words in my journal and say: This is what I want.
30 years old, a January afternoon
I’m sitting at my desk, which is actually a wardrobe with a shelf/desk in it that I painted periwinkle blue. Turns out, periwinkle blue was the color of my bedroom as a baby.
My job caring for that dear family and their home has come to an abrupt but positive end. We started doing it because we both needed it and now we’ve all gone through a year of monumental change. They moved house, traveled the world, changed jobs, lost and gained pets. I healed. We’re in different places now, with different needs. In our ways, we supported each other through this year.
So I’m now adrift. And it feels…ok? Yes, it feels ok. How can it feel ok? How can it feel spacious to not know what comes next?
Being well, finally, certainly has something to do with it. I wouldn’t say I’m 100% “healed”—I’m a sensitive soul with a sensitive system and that’ll always be the case. Now there is a peace. I’m able to function in everyday situations and I’m not constantly plagued by mysterious systems. I’m not always in panic mode. If anything comes up I know that I can figure out whatever it is with the help of my husband and Angie.
With the time I now have I decide to start a Substack, which I’ve been meaning to do since last summer. I want to talk about menstrual cycles and bodies and how having a uterus is actually amazing and how society has left us in the dust but we can hold each other up. I want to talk about how the church and other institutions ignore women and marginalized people’s experiences and oppresses us. I want to talk about healing and the wisdom of the body. I want to talk about our place in nature. I want to talk about all of this with other people. I want to feel less alone and I want others in need to be supported.
I finally make an account and write my first post under the name that popped into my head some time ago: Peace of the Whole.
This, I think, is what I will do. For now, for always? Who knows. But this feels right. This feels like a good place to grow.
Well, that was a lot. If you’ve made it this far, I really appreciate you reading. Writing this whole story wasn’t easy, but to see how far I’ve come and how I’ve made my way was a valuable lesson.
If you have anything thoughts or questions, I would love to hear them. 🌀
I feel very passionate (not in a positive sense) about the concept of how the first thing people ask in our society is, "What do you do?" As if that IS who you are. As you mention being known as the girl who dyes things...it is suffocating and also belittling to be known or identified as your job. I have lived under the title of "nurse" for over a decade and only just recently am trying to take off that title to allow myself to unveil that I AM more than what I do.
Thank you for sharing your story.