Hives

Finding my voice and my self again and again

I thought they were bug bites.

Tens of them; raised red dots patterning my forearms, begging to be scratched. I scratched them. More appeared.

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The Nightmare //Johann Heinrich Füssli

This last October, when the hurricane hadn’t yet hit land, I bought a carton of cigarettes, on a whim. The hurricane passed and there they were: unlimited packs of yellow American Spirits. A misleading name and theme for these cigarettes made by one of the most exploitative industries in the world. American Spirits are not any better than Camels or Newports (both of which I’ve smoked for periods of time). They’re all made by the same company.

In early December I told my therapist that it felt like someone else's hand was holding the cigarette. Like someone else's lungs were inhaling. Like a part of me had returned and brought this habit with them. “It’s possible,” she said. “Can you ask this someone what it is they want?”

I’ve never been a regular smoker. Not like my mom was; smoking every day, an exclusive ashtray, habitual touchstones scattered around the house and patio. She always perched near the fireplace, lighting her Duraflame logs and letting the heat suck the cigarette smoke up and away. During summertime she smoked outside, leaving the patio door halfway open so tendrils of smoke always crept in through the screen. When I was a child, she smoked inside, so all my clothes had an acrid, smoky smell. Anyone could smell me if I was around.

I started stealing her cigs when I was fourteen. Maybe thirteen. Without them, I may have never started. The little nicotine sticks unlocked doors into new social spheres. As I got older, I started and quit with the fire seasons, going months at a time without smoking. Alcohol was the perfect pairing. Whenever I quit drinking, the smoking stopped, too.

This New Year’s Eve I quit smoking. I knew I had to, because I wanted the cigarettes like I’d never wanted them before. For months it felt like they were holding me together, slowing a process of unraveling. Without them the unraveling hastened. I felt myself coming apart.

Me and my mom’s friend, Patty, who died a few years ago of breast cancer.

In my mid-thirties Patty, a friend of my mom’s who had taken me under her wing, mentioned perimenopause. “Watch out for it,” she said. “It will sneak up on you.” Now that I’m forty-three, I think it has. I can’t pinpoint a moment of unraveling. How can one, when one’s entire life has been a series of disintegrations? When solidity feels foreign? When did it begin? And what ended, when it did?

Maybe it was in the Czech Republic— that time at the train station, when I temporarily forgot everything about myself. I stood there, on the platform, and couldn’t remember where I was going or where I’d come from or what country I was in or who I was. I stood there, frozen, immersed in foreign chatter, and waited for my memory to return. When it didn’t, I ran down into the tunnel and stared at the train schedule. Nothing. I ran back to the platform. A train came, but I didn’t know if it was mine. Not until I heard a group of tourists speaking English did I remember who I was. Slowly everything came back. The train was mine, and just as it was departing I hopped on, shaken. Trembling.

Kutna Hora, a day after I temporarily lost my memory.

In 2021, two years later, back in the U.S. and after the pandemic, I was diagnosed with ADHD and rheumatoid arthritis, both nearly at the same time. No one tested my hormones. Not that I know of.

I wonder— is this what perimenopause feels like? Being in a PhD program, overwhelmed by work I don't enjoy, and unable to leave because of student loans and my precious health insurance? Does perimenopause feel like losing one’s agency? Or am I the central problem in my life?

Do my past selves follow me around like ghosts, haunting me? I keep telling myself it will get better. Things improve. I relax. Then another collision happens. My past selves crash into the present moment. They scream: EMERGENCY! My body listens, no matter how I safe I am.

After I found the bites two weeks ago, I changed my sheets. Had I gotten bedbugs from the laundromat? They didn't look like bedbug bites. I Googled hives. Rheumatoid arthritis rash. Autoimmune flare. I woke up covered in a bumpy red screaming rash covering my legs, my back, my belly, my arms, my neck. My joints hurt. My body protested every movement.

Immediately I thought: this is my fault. I didn't rest during my three week long winter break, because I wanted to work on my book revision. There was that professor who accused me of self-plagiarism and told me I deserved a zero in his class. And that writer who threatened to sue me. If only I had been better. More vigilant. Clearer. Quieter.

When school started the first week of January I was already exhausted, overwhelmed at the thought of three reading-heavy courses; two classes I had to teach and my book revisions, now past the date I had set for myself and my editor. All that and my newsletter; the only thing I enjoyed besides my revisions.

I must have eaten the wrong things. I did not rest when I should have rested. Hadn’t I learned this lesson already? My body was punishing me for my failures.

My insurance company called last Monday and told me that my doctor had not approved the biologic drug I have to take for my autoimmune disorder. I spent half a day relaying information from my insurance to my doctor’s office, like some frantic translator. Time I could have spent working, or resting.

A voice interjects: why can't you be more positive? If you were more positive, you would not have these hives. You would feel so much better.

On Wednesday I miss my therapy session because I am sick.

On Wednesday I go to the doctor. She prescribes me steroids and writes me a note excusing me from classes for a week. That night I attend my poetry workshop via Zoom, laying in my bed. The next morning, there are more bumps. No skin is spared. My immune system senses an invader. A danger.

It is me.

For the first time and as long as I can remember, I let myself sleep in.

I want to write a post about this, but then I think to myself: shouldn't I write a post about how good things are going? Shouldn't I be focusing on the positive? Isn't that what people want, things that make them feel better? Isn't there so much good in my life? I live in a house. Not quite a house. A tiny cottage with my cat (and the rat residing in the heating duct). I have enough food to eat and a theoretical book deal as long as I can finish this last revision which at this point feels like Mount Olympus or (insert other mountain). Or is it my classes that feel like mountains? Or teaching?

What do my subscribers want? What can I do to convert more subscribers to paying? So that I can have enough money to quit this PhD program? To leave this program that is exploiting my labor? To simply have the option, in a financial sense? How much money in my bank account is enough for me to tell myself I am free? To not feel like an indentured servant?

Doesn't everyone feel like an indentured servant in some way or another? Just me?

No. Definitely not just me. A lot of people, probably.

When did I start thinking that I needed to write certain things so people would like me?

Isn't that the same thing as wearing certain things so people like me, or doing certain things so people like me, or being a whole different person so that people will like me? Wouldn’t that just be me doing the thing I've been trying not to do for the last 10 to 15 years? It would just be me repeating the thing that I've been trying not to repeat since I started therapy!

Why do I feel like I need to write certain things to make other people happy?

There comes a point in every artist's life, if enough people start paying attention, where they can forget why they started creating in the first place. They orient towards “readership” and “audience” and “growth.” To me that’s soul-killing. Every time I go there, a part of me suffers. Some artists seem to understand the balance. To be able to hold both things. For me it’s impossible.

I started creating things because I wanted to understand the world and myself. I share the things I create because there's this magical thing that happens when we don't hide our wounds. This doesn't mean I reopen my wounds. It only means not listening to the ashamed part of me who says: you are bad. Not enough. Instead, I share who I am in the world at this moment and hope for the best. For freedom. It always comes, no matter if anyone hears me. The act itself is freedom.

I am, at this moment, a fragile person who may be falling apart. Why be ashamed of feeling like the fabric of my very self is coming undone? That the world keeps calling me by a name I no longer answer to?

Isn’t there something beautiful in feeling myself coming apart at the seams? What if I let go and surrender?

Every time I’ve fallen apart, something new has happened. Something in me has gotten stronger. More resilient. It never lasts. Nothing does. But the strength builds, and it carries me through.

So, here I am. Readers. Friends.

A human being, feeling my own fragility. Is this more real than stability. I know it will get better because it has gotten better before. Or could this be part of the better? Could it all be one thing?

Either way, I will disappoint people, including myself, but what can I be if not myself? And even now, in this moment, it feels better, because I’m letting the light in, and being honest about how scary it is when my immune system attacks itself. Honest about feeling trapped. Honest about entering into a phase of life that manifests differently for each of us. Honest about hating certain choices I’ve made, and losing the hopeful sense of potential I once felt. And: honest about the freedom I feel, sharing this with you.

When I was first diagnosed with my rheumatoid arthritis my entire body ached with an ever present throbbing. My joints were so swollen I could barely type, or write. I tried at least ten different medications until I found one that worked. Then there was the process of insurance approval. Then, less than a month later, my spine stopped working. Then I had to get surgery.

I had to ask for money from strangers. When they gave it to me it felt like a miracle (and still does). Now my body is freaking out again, and at one point or another I can only hope that it will return to some sort of equilibrium, but the equilibrium will be temporary, because everything is temporary. This time I do not have to ask strangers for money.

This time I know: it’s temporary. The screaming itching bumps on my skin and the lotion I slather all over myself. The bright blue cloudless sky and my windchimes at my back as I sit on my little patio. My cat. Me.

I take a breath there in that space. A space of constant change. In that space I am grateful. And then it changes.