In a World Full of Cruelty and Injustice, Becoming a Mother Anyway

Eliza Margarita Bates | Longreads | July 2019 | 26 minutes (6,506 words)

“How are you doing, emotionally?” the nurse asks. Her name is Yanna and she has given me her cell phone number so I can call her any time I need anything. Her voice is young and gentle. She knows everything about me — my illnesses, physical and psychiatric, my dosages of prednisone and Paxil, my weight. It’s all in my chart.

“I’m OK,” I say, not really knowing.

I’m in a drugged haze. I can’t stand up all the way, so I am leaning on Jacob, hunchbacked, as Yanna guides us to the elevator. I swipe my wristband to make the elevator come and we ride it down one floor. I follow the procedure outlined in a video that plays on loop for washing my hands, up to the elbow, slowly, slowly, before going through the double doors. When I walk into the room, I am confused. Glass boxes are scattered about, beeping, arranged seemingly without order or symmetry, but with enough space in between to allow for privacy. It takes me a moment to I realize that in each of the boxes, under wires and flashing monitors, is a baby. I start sobbing. Jacob holds my elbow to keep me upright. Yanna rushes over with a tissue, and then leads us to our own glass box.

***

At Auschwitz there is a snack bar, a vending machine, and sort of bookstore/gift shop where they sell postcards. It is a total mindfuck.

Here, you can see tourists taking photos of the former gas chambers; here, a mountain of eye glasses removed from the faces of children, mothers, grandparents, and the jerk who lived down the street before one and all were sent to die together in the gas chambers. And, here, a little way away, you can purchase a candy bar or a stale, shrink-wrapped pastry to munch on while you browse books on Nazi doctors performing experiments on disabled children.

Or you can buy a postcard. “Hey, Ma. Thought you might like this picture of a death camp. It made me think of you and, you know, being Jewish.”

Of course, I buy a postcard. How could I not? I buy three, actually. I don’t send them. I tuck them into the spine of a notebook and misplace them after my return. I buy the one with a photo of the arch that says, “Arbeit macht frei,” work will set you free. The other two, I don’t remember. I think one is of gas barrels, and another may be of starving survivors after the camp is liberated.

I hadn’t planned on going to Auschwitz. Too dark and depressing. And there so many other genocides and atrocities to learn about closer to home. But then the election happens just a couple weeks before we leave for the trip and, like buying the postcards, it seems like something I can’t not do while in Poland. I have to see where all of this could be headed.

My husband Jacob is performing at a jazz festival in a town called Bielsko-Biala. I join him there so we can take advantage of the free hotel and free ticket to Europe. I don’t see much of the town because our hotel is on the outskirts and the bone-chilling November air doesn’t inspire exploration. We are less than 45 minutes from Auschwitz.

The hotel has a casino on the second floor, a glass elevator, and a mirrored lobby. To the left of the elevator there is a restaurant and bar. In the restaurant, along with the rest of the band Jacob is touring with, we drink vodka and eat borsch on our first day in Poland. We can’t stop nervously making Nazi jokes. We all feel a little on edge being here, where the largest population of Ashkenazi Jews once lived, the site of Hitler’s most efficient genocide.

“Excuse me, waiter,” one of the Jewish band members says, after a couple rounds of vodka, raising his arm up in a mock Nazi solute, then pulling it down with his other hand. We titter and drink. The Polish waiter has his back to us and thankfully doesn’t see.

Jacob is in rehearsal all the next day. I am left alone with nothing to do. So I go to Auschwitz.

It’s the hair that gets me. Shaved off the heads of prisoners. The Nazis used it for rope and textiles. Divided it by color. Behind a glass window is a mountain of hair the same grey brown color as mine.

My mom has always told me I have a shiksa nose, and no one ever guesses that I’m Jewish, with my father’s Anglo last name. I was raised by broke hippie Atheists in California, an ordinary white person with a little bit of Mexican mixed in. We celebrated Christmas by eating lox and bagels while unwrapping presents under the tree.

I hadn’t planned on going to Auschwitz. But then the election happens just a couple weeks before we leave for the trip and it seems like something I can’t not do while in Poland.

But here, alone at Auschwitz, I feel more Jewish than I ever have, looking piles of hair the same color as mine, and at photos of prisoners with my face. That round Eastern European face with high cheek bones — the same features as my own. Or, at least how my face looks now in this moment I am visiting Auschwitz. Later, it will puff up and my cheekbones will disappear from two years of high-dose steroids.

I think about how I wouldn’t have even made it to the final solution. My broken body would have been deemed useless for forced labor. I would have died long before the horrors of the concentration camps turned into the horrors of the death camps.

In the taxi back to the hotel I count the houses. One, two, three, four, five, six, seven, eight, nine, and ten. That one. Poof. Gone. Ten percent of the population of Poland was Jewish before the war. And over 90 percent of the Jews in Poland were wiped out. Gone. Poof.

It’s here, in the taxi, counting the houses, that I decide it’s really okay for me to have kids of my own. We’ve been sort of, kind of trying on and off for almost a year. More off than on because Jacob always seemed to be on tour when I was ovulating. But before the trip, after the election, I decided we should stop trying, that I should overcome my selfish desire to procreate in a world so full of horrors. But now, in this moment, after seeing the worst of what it means to be human, I set my mind to it; I’m going to make a baby. Despite the fact that I’ll be a disabled mom. Despite the horrors. These murdered cousins of mine (according to science, all us Ashkenazi Jews are related, at least 30th cousins or closer; that’s why we’re supposed to do genetic testing before having kids together), who didn’t get to continue their own family lines, they give me permission to bring a baby into this world.

***

In purple text, my handwriting on the first page of a notebook:

Injection project: January 2, 2014

Jacob

Before:

2 mins — how do you feel about illness? What feelings come up when you think of illness?

Then in Jacob’s wiry scrawl:

I’m frightened by illness. I always took it for granted that I was healthy. Losing control of being healthy is terrifying. I desperately want my wife to recover as quickly as possible. It is difficult to see her in pain.

It is the beginning of an art project. I was going to invite different loved ones over every week to inject me with the biologic medication I had started taking to treat rheumatoid arthritis. Then I’d make them write down answers to questions I’d concoct for before and after. I think I did the exercise, too, that one time, writing my answers in a separate notebook, long lost. I remember feeling vaguely disappointed that nothing profound came out of it.

Here is Jacob, after:

That was a bit scary. I didn’t want to botch the injection process. I am relieved that the process seemed to go smoothly. I am happy that I was able to contribute in a small way to my wife’s recovery. I’m sympathetic toward her pain. It seemed to be very uncomfortable and I feel bad for her. Hopefully the discomfort will lessen over time.

There were once photos from this unfinished project, too. Lost to the dust. I put on makeup and piled my hair up high. A timer was set to capture the moment Jacob injected me.

I injected myself from that point forward. And there was no recovery. There will be no recovery. I have an incurable progressive illness, something we didn’t quite understand at the beginning.

***

I go alone to the follow-up appointment. It’s a Saturday. I’ve picked this doctor because he has weekend hours and I don’t want to miss too much work, and because he is the only one that comes up in my Google search for “holistic rheumatologist in NYC.” My hippie upbringing has made me skeptical of doctors who don’t use crystals or non-FDA-approved herbal remedies.

Most Saturdays I work, too, but not a full day if I can help it. It’s early September, 2013, two weeks before my 35th birthday. I have recently been promoted to lead the communications department at a labor union, where I work around the clock with no days off, ironically, fighting to improve labor conditions for other workers. My body has begun to fall apart. I’ve been waking up every day with swollen fists, hanging limply by my side, too painful raise up against the bosses. And I’m so tired some days that I feel like I might die. But, as a friend tells me, “there are no sick days in the revolution.”

I wake up early to account for weekend subway service, and make the trek from Brooklyn to the doctor’s office on the Upper East Side.

“I want to spend a little more time with you today, so let me take those acupuncture needles out of my other patient,” the doctor says as he walks me into the exam room. Holistic, see.

He doesn’t take me into his office, but tells me right there in the exam room.

I sit up high on the exam table, my thighs pressed against the crinkly paper lining as my feet dangle awkwardly without purchase. The top of the doctor’s head is at least two feet below mine as he sits low to the ground on a black leather stool.

“It used to be a death sentence,” he says. “Your hips, your knees, your shoulders, we can replace. There’s nothing we can do when it goes to the neck.”

I begin to cry. “I’m sorry,” I say. “It’s not like I have cancer. There are worse things to have.”

He leaves the room to get me a tissue then comes back and talks to me about medication options. He says it depends on whether I want to try to have kids right away, considering I’m in my mid-30s, because a lot of the medications are not allowed during pregnancy. But because my case is aggressive, I could be risking irreversible damage to my body if I wait to start on the stronger medications, the ones that I can’t take if I’m trying to get pregnant.

My body has begun to fall apart. I’ve been waking up every day with swollen fists, hanging limply by my side. And I’m so tired some days that I feel like I might die.

When I leave the doctor’s office, I walk west along 86th Street to Central Park instead of going back to the subway. It’s beautiful outside. The air is refreshingly dry and cool. It’s a sunny day, but the weighted humidity of summer is gone.

I walk through the park crying.

The colors seem more vibrant. Everything is vivid and crisp. I pass a family having a birthday party in the grass. A little girl with long black hair squeals as she bats at a pink and white paper-frilled piñata. I’m still crying, but am momentarily delighted.

I walk all the way to 59th street, past the rows of horses in blinders harnessed to white carriages, before I call Jacob. He tells me to come home.

At home, Jacob’s friend is shooting a film in our living room. At some point later she sends us the link to the completed movie, but I never watch it, fearing it will remind me of that excruciating day. I spend the evening barricaded in the bedroom, afraid to go into the hallway, because someone might see my face and ask what’s wrong. Jacob comes in and out of the room to comfort me. He makes jokes about how my fingers will be permanently cemented into obscene gestures and that I’ll start a trend and be so bad ass. I make him promise me that we can get a puppy since I can’t have a baby now.

He brings me water as I hide from the film crew, who now seem like invaders in our home even though we had cheerfully agreed to allow them to do the shoot, thinking it would be fun for our living room to show up in a movie. I want them gone more than I’ve ever wanted anything in my life. But the shoot goes overtime, late into the night, while I remain trapped in my bedroom.

***

Autoimmune diseases arise when the body has trouble distinguishing self from other. White blood cells amass battalions to attack outside invaders like the flu virus or the common cold. But sometimes those battalions get confused and attack cells that are part of the self.

In the case of rheumatoid arthritis, the body primarily attacks the synovial fluid that cushions the joints, causing the joints to disintegrate. This sometimes shows up as gnarled fingers and toes, permanent disfigurement.

That’s why the word “arthritis” is in the name of the disease. But when most people hear it, they tune out the “rheumatoid” part and just think of osteoarthritis and old people. Rheumatoid arthritis is a stupid name for an incurable progressive illness that impacts other parts of the body as well as joints, that can kill you, and that you can develop as a child or at any age. It makes people, as if puppeted by some shrill higher force, talk about their grandmother’s aching hips or bad knees. Look, don’t get me wrong, aging in an ageist world is hard. I should be so lucky as to live long enough to develop osteoarthritis, and I’m sorry about your fucking grandmother. I’m sure it sucks to be her sometimes. But it’s not the same thing. Other autoimmune diseases have sexier names. Lupus, for example, conjures werewolves and full moons. That is a disease where the body attacks the soft tissues. In Multiple Sclerosis, which sounds sophisticated and scientific, the body attacks the central nervous system. A friend with rheumatoid arthritis (or as those of us with it abbreviate it, RA) — who walks with a cane, tells people she has MS so she doesn’t have to listen to reports on grandma. (Us chronically ill folks, both visibly and invisibly disabled, like to use acronyms for our diseases.)

Once the body turns on itself, there’s no telling what it will attack. Rheumatoid arthritis isn’t limited to the synovial fluids. It can damage the lungs, the kidneys, the liver, the eyes, the skin.

The chronic inflammation associated with autoimmune diseases also causes fatigue and brain fog. It feels like looking out at the world through a long dark tunnel, the edges fuzzy in the distance, nothing crisp or close up.

And that’s just the disease itself. Then there are the treatments. The primary course of treatment for moderate to severe RA is a chemotherapy drug called methotrexate, which slows down the immune system. It’s the drug of choice for insurance companies because it’s cheap to produce in pill form, unlike biologic medications that must be injected.

When I’m on methotrexate, my hair falls out. I am too queasy to eat more than a few bites of food most days, so my cheeks hollow. A friend tells me, trying to encourage me to eat more, that I look like I’ve just been liberated from the camps. My pants sag. I try to eat a little bit of ice cream every day to stop my body from disappearing. I force myself to drink milkshakes.

After several months of disappearing, I finally get the okay to switch medications. (This is called step therapy. Insurance companies require patients to first “fail” on the cheaper medications before trying the more expensive, possibly safer, and more effective ones.)

Each subsequent medication comes with its own long list of possible side effects, almost all including cancer and death. New blood tests are required to make sure the medications aren’t brewing death. For one medication, I have to get my eyes checked to establish a baseline, and then follow up every six months, so we’ll know if the drugs are causing irreversible damage to my retinas. The ophthalmologist dilates my pupils and has me look into a lens with a white box outlined in black. The lines in the box, she tells me, will start to look wavy in subsequent check ups if my eyes are going. I don’t make it to the next check up because the medication gives me explosive diarrhea, so I stop taking it.

Some members of my hippie family are horrified that I am taking the man’s toxic drugs. But I haven’t let go of my roots entirely. I also try every herb, holistic diet, and practice I hear about that doesn’t seem like it will kill me.

I go gluten free. I go paleo. I take turmeric and sour cherry supplements. I do acupuncture. I get a book by a doctor who claims to have cured her MS by “eating for her mitochondria.” Mitochondria are the energy centers that make our cells do whatever it is that they do. According to this doctor, vegetables, lots and lots of vegetables, are what our mitochondria want. I measure out 9 cups of vegetables to eat each and every day. For about two weeks. Maybe 3. All of the chopping and chewing is exhausting and makes my hands and jaw hurt even more. I go back to pasta and cheese.

***

The first time I faint, I’m in the middle of a conversation with my boss about our campaign to stop a hospital from being shuttered and turned into condos. When I come to, she is standing over me screaming for someone to dial 911. We are in her glass-walled office where everyone can see. I begin to cry and apologize, red-faced with shame.

I faint once at home, too, in my living room. I come close to fainting on the subway, on the sidewalk, in line at the coffee shop. I’m constantly looking around for things to grab hold of in case the world starts going blank. Each time it happens, I think: this is it, I’m going to die right here, right now. The edges of the world get fuzzy and then darkness spreads inward until there is nothing. With the darkness comes heart-choking terror. Then nothingness.

I go see my new rheumatologist, who gives me an EKG and refers me to a cardiologist. The cardiologist tells me my heart is fine but recommends further testing, just in case. My therapist (of course, I have a therapist. See: insecure childhood/broke hippie parents) refers me to a psychiatrist, who diagnoses me with panic disorder.

I never find out whether the dizzy spells are a symptom of the panic or if the panic is a reaction to dizziness caused by my illness, or one of my medications — eventually the spells stop happening. What I do know is that being sick has made me very unwell.

***

I sign up for a meditation class for people with chronic pain called, “You Are Not Your Pain.” There is a textbook by the same name and there are weekly homework assignments that I don’t do.

The point of the class isn’t that we can make our pain go away, but that it doesn’t hurt quite so much if we learn to experience it differently, if we can allow it to become a little less solid and heavy.

Solid pain feels like lead weights crushing my bones, weighing me down, making me sink to the bottom of an ocean whose surface gets farther and farther away, impossible to breach. I cannot come up for air. I am suffocating with pain in every endless moment.

The teacher of the meditation class, from whom I’ve taken several other classes (I keep coming back, thinking the next time will be different, that I’ll be a good student, a good meditator, I’ll do the work, I’ll make some progress toward enlightenment this time), is kind, but firm.

In class, he has us do very, very slow movements and gentle guided meditation. Sometimes people cry. There are students with back injuries, who have been in car crashes, people with undiagnosed chronic pain, a man in a backwards baseball cap who has chronic pelvic pain, a couple of other women with autoimmune diseases.

I find out I’m pregnant just a few days before the class ends. On the last day of class, as instructed, I write myself a letter. The teacher mails our letters to us nearly 10 months later. I read mine in bed shortly after coming home from the hospital. Here’s what it says:

By the time you read this letter you will probably be very pregnant. You probably haven’t been meditating. That’s OK. Be kind and gentle with yourself. Today is a new day. It’s a chance to begin again. It’s OK that you haven’t been practicing. Start now.

I am inspired. I commit to begin again. Today, I start again, I say to myself, folding the letter and placing it on the bedside table, intending to save it to read again later, but from there it will disappear into the void of my messy apartment and never be found again. I haven’t meditated since.

***

When I discover I am pregnant, Jacob is in Graz, Austria, so I am home alone. We’ve been trying, seriously and scientifically, with plenty of tests but no medical intervention, for my two ovulation cycles since our return from Poland, since the onset of my post-death-camp determination to have a baby. I’ve been screened for Tay-Sachs and I’ve once again updated my RA medication regimen.

Graz is in the South-Eastern part of Austria, the second largest city after Vienna. Austria is a land of rolling green hills, the setting for The Sound of Music, and the birthplace of croissants and Hitler.

There is nothing rational whatsoever about becoming a parent. It means bringing someone into the world whose cells you’ll carry in your body for upwards of 30 years, whose pain becomes your pain, and who you know will suffer and die.

Jacob is there interviewing for a professor of trombone position. He is a finalist for a rare unicorn job, fully funded, with good health insurance. When he is invited to apply for the job, I am enthusiastic. Why not live in Austria for a few years? It would be such an adventure. Something I would never do on my own. I obsessively look at housing in Graz. I research all the best restaurants, the farmers’ markets, the expat groups, the playgrounds, the politics.

It’s the beginning of February when Jacob goes for the interview, the coldest, darkest month in New York City, when winter feels like it will never end. I’ve been working too much again, forgetting my body. I’m consulting now, supposedly part-time so I can rest and do “self care.” But I get swept up in the excitement of the taxi workers’ strike against the Muslim ban, so I’ve been working around the clock for weeks, emailing reporters and tweeting in the middle of the night, editing press statements at 3 AM. I want so badly to do my part, to support these workers on the frontlines, confronting evil and fighting back, without my fragile body getting in the way.

On the day my period is due, before Jacob leaves for Austria, I take a pregnancy test. It’s negative. So we will be unburdened; free to do what we will. It’s all fine, I tell myself. Maybe I’ll try to get pregnant after we move there. I search online for international preschools in Graz.

I wake up two weeks later unable to bend my fingers. Pain in my palm pulls my fingers down into fists. Jacob is gone. My period hasn’t come yet.

I take my first dose of steroids.

That night I feel as if I’m in an absurdist circus performance as I struggle to make the bed. The sheet has slipped from the foot of the mattress onto the ground. Our pitbull, Mona, my RA-diagnosis consolation gift, no longer a puppy, watches me, waiting to take her place on the bed, as I bend down and grab the sheet with my elbows. It slips back to the ground. I try it again, this time with my teeth. The sheet is dry and the fabric squeaks against my teeth as I pull it up to the top of the bed. I switch off the light with my elbow and climb into bed. Mona jumps up and carves a circle with her body to create a spot for herself.

By the next morning, the steroids have kicked in. My fingers uncurl. I am famished.

No one believes me later when I tell this story, but it really happens exactly like this: When I wake up, I go to the kitchen and open the fridge, searching for something, anything, to eat. There is a full jar of McClure’s spicy dill spears. I eat all the pickles, one at a time, putting the jar back in the fridge between each one. I have never tasted anything more delicious. Then I drink all of the spicy pickle juice straight from the jar, standing with the fridge door open. Then I throw up a little bit in my mouth.

Huh, I think. That was weird. It occurs to me that I should take another pregnancy test.

This time it’s positive. Jacob comes home.

***

Seventy percent of women with Rheumatoid Arthritis go into remission while pregnant. I am not one of them. Instead, my immune system rages. My body thinks it is under attack, occupied by a hostile invader. I want this baby more than I’ve ever wanted anything. But my body disagrees.

I increase the dosage of steroids and blow up. I try going off the steroids and my feet stop working. My fingers won’t straighten. One night I sleep with chopsticks squeezed into the fingers of my compression gloves, making DIY splints so that my fingers won’t curl in the night. When I wake up my fingers are straight but won’t bend. I’m like Edward Scissorhands but with blades too dull to be of any use.

I go back on the steroids. I gain 60 pounds. I am famished and cranky all the time.

High doses of prednisone, the kind of steroids I’m on, can cause something called Cushing’s Syndrome. Symptoms include a bloated abdomen, stretch marks, and what those in the know call “moon face.” Cheek bones disappear behind puffy flesh and the face becomes round like a full moon.

Pregnancy also results in a large abdomen and stretch marks, so go figure. I mourn my face. I walk around complaining all the time. It’s the first time in my life that I have felt free to complain, and the complaining is wonderful. I’m not pretending to be OK. I am miserable. But I am also very happy.

***

“With your health, do you really want to risk carrying a child to term that doesn’t have a chance at viability?”

The high-risk obstetrician asks me this in her office when I tell her I don’t want to do the 12-week tests to find out if I’m carrying some sort of mutant baby, or perhaps one with Down Syndrome, or another disability.

Don’t get me wrong. Free, on-demand abortions for all, no exceptions. But I want this baby. I have chosen this baby. We have chosen each other. No one is going to take this baby away from me by telling me there is something terribly wrong with it and I should terminate. I know that I will love this baby if it lives for one day or a hundred years. If it goes to Harvard or never learns to read or speak. I am fiercely in love with this baby and no medical test or diagnosis of disability will change that.

And who am I to say what kind of body is worth living in. Look at mine.

We refer to the baby as “it” throughout the pregnancy because I don’t want to find out the sex. I want the baby to have this brief time floating inside of me without any gendered expectations to be tough or sweet.

Jacob is wise enough to go along with all of my choices without putting up a fight.

I switch to a hospital-based midwifery practice after this appointment. On my first visit to the midwives, they make a note in my chart that I turned down the 12-week screenings, but don’t bring it up again after that.

***

Jacob and I argue over names. We have to pick out two sets of them since we don’t know the sex. I want to use the name of one of the women whose photo I saw at Auschwitz. Jirina Pickova, born on April 11, 1912, member of a leftist group associated with the Teachers’ Union. Executed November 16, 1943, 70 years and two days before I visit the death camp. But Jacob says Jirina sounds like urine and won’t compromise on this. So we agree to Roza, the Russian spelling of Rosa, if it’s a girl. And Zev, which means wolf in Hebrew, if it’s a boy.

***

My water breaks at 7:30 in the morning, five days after my due date. I wake up to a gush of fluid flecked with white mucus on the sheets. The midwife on duty gives me a deadline of 7 PM to come into the hospital. I text the doula.

By the early afternoon, I’m still not having any contractions and I know I’ll have to be induced if I’m not in active labor when I get to the hospital. After discussing with both the midwife and the doula, I force down a nasty milkshake of castor oil and vanilla ice cream. Then I take a nap.

At 4 PM I wake up. I go to the bathroom and as soon as my bladder is empty I have a contraction, then another one, and another. The contractions are coming on top of each other. I can’t feel the baby moving. I crawl back into the bed moaning, and make Jacob call the doula to tell her to come right away. When she arrives she makes me eat some apple with honey to wake the baby up. The baby moves a little, just a slight shift, and then goes still again. I am panicked.

In my head, over and over, I can’t stop myself from repeating in a loop: It’s a boy, and he’s going to die. It’s a boy. And he’s going to die. The voice only quiets at the height of my contractions. In between contractions, I poke the baby’s feet, or where I think the feet are, trying to coax it into moving. But I can’t shake the fear that the baby is not OK.

Jacob and the doula chomp on the slices of apple that I have abandoned while I alternate between whimpering and screaming on the bed. They won’t stop eating apples. It feels like they are eating inside my head. Crunch, crunch. It’s a boy. He’s going to die. Crunch, crunch. It’s a boy. He’s going to die.

They feed me a piece of toast, which I projectile vomit all over the floor. I see the vomit seeping into the cracks in the floorboards and think about how hard this will be to clean up later.

I practice my breathing exercises, in and out. In and out. Inhale. Exhale. For one contraction, just one, I become my breath, in and out. The panicked voice goes silent. The molecules of pain begin to separate and I can finally rest in that distance. The pain is still there, but no longer solid. There is space in between the dispersed particles of pain.

The doula, watching me breathe, says, “Good. Was that contraction different, or are you getting the hang of it?”

I don’t answer. The pain becomes solid again.

A few hours later, Jacob and the doula march me into the hospital, one on either side of me, like I’m the friend who drank too much and needs help getting home, while I scream at the top of my lungs. A security guard knowingly runs ahead of us and holds the elevator doors open.

Seventy percent of women with Rheumatoid Arthritis go into remission while pregnant. I am not one of them. Instead, my immune system rages.

Upstairs, I forget that I’m here to deliver a baby. I forget about the baby altogether. The voice goes quiet in my head. There are no more thoughts. I’m not human anymore. I’m a wild animal, trapped, looking for escape. I refuse to put on a hospital gown. I pace the room, bottomless. I go into the shower, I come out of the shower. I bend over the bed; I demand that the nurse bring the birthing ball. Jacob and the doula try to put hands on my lower back, comfort me, cover me with sheets, but I can’t stand being touched. I want to be alone in a dark cave.

By midnight, I’m exhausted. I can’t stay still. But I can’t stop moving. “Fuck this,” I say. “Give me the fucking epidural.”

Jacob doesn’t believe me at first. “You didn’t say the safe word,” he says.

“Cacao. Cacao. Cacao. Drugs. Now. Motherfucker.”

The midwife laughs and tells us she loves us and tries to explain Portlandia to the doula before rushing to get the anesthesiologist.

The first ten minutes after the epidural kicks in are the most blissful of my entire life. Then the baby goes into distress.

***

There is nothing rational whatsoever about becoming a parent. It means bringing someone into the world whose cells you’ll carry in your body for upwards of 30 years, whose pain becomes your pain, and who you know will suffer and die. It means entering into a state of permanent vulnerability where the best possible outcome is dying before your child.

***

Zev is born by emergency C-section in the wee hours of an October morning. After he is released from his glowing glass box, perfectly perfect, as I knew he would be, but also apparently healthy and able bodied, with just a little fluid in his lungs, he latches onto my boob and doesn’t let go for the next year.

***

On Zev’s first birthday I keep him home from daycare so we can spend the day together. He doesn’t know what a birthday is yet, so it’s more for me, really; a chance to celebrate surviving a whole year of parenthood.

Being a chronically ill parent in this ableist dystopia is harder than I could ever have imagined. Some days I am so tired that I go back to bed after Zev leaves for daycare, and I stay there until it’s time to pick him up. Other days I let him crawl all over me while I lie on the floor because I don’t have the energy, or I’m in too much pain to move. I do most of my work now from the couch or bed, my laptop heating pillows as I write in other people’s voices and wage battle against the bosses.

I spent the first six months of his life popping prednisone, fighting with my dirt-bag insurance company to get them to pay for a breast-feeding safe medication that will help me function without making my bones turn to dust like the steroids will eventually.

My face is still unrecognizable. I am trying to ignore all the “get your body back after having a baby” messages and learn to love this new bigger body of mine with its mystery folds and curves. My belly is so scarred with stretch marks that I can no longer use it as an injection site. Did I mention that I am exhausted? But I’ve finally gotten my new biologic medication, the breast-feeding safe one, which is a good thing because this child loves to nurse. And making milk is the first thing I can remember my body doing willingly, without struggle (besides getting knocked up) since I got sick, and in amounts so copious I could probably get a second job as a wet nurse if anyone wanted to give their child milk laced with every possible baby-safe medication on the market. I’m tapering on the steroids, at long last. My fingers bend willingly enough most days to stroke Zev’s perfect cheeks.

I am in love with this child. He is the most magical, wonderful creature I have ever met. More than anything, I want him to grow up to be kind and loving in a world full of cruelty and hate; to never turn away from suffering or injustice. So I try to do my imperfect best to model that for him. And today I have enough energy to savor the day with him.

I make him banana pancakes for breakfast and keep my phone put away so we can play together uninterrupted. He feeds the pancakes to the dog, calling out “ah, ah, ahhh” to get Mona’s attention before dropping each lovingly mixed, heart shaped, and grilled pancake into her upturned jaw. Then he hands me toys strewn about our chaotic living room, squealing with delight when I say, “Thank you. Thank you. Thank you so much. This is the nicest thing anyone has ever given me.”

On the way to the playground that afternoon, we pass two swastikas spray painted onto the sidewalk. Later that night, I’ll remember to call 311 to report them, and in another week I’ll be filled again with dread after a massacre in a Pittsburg Synagogue. Still later, the shocking horror of concentration camps imprisoning people here and now will become apparent. I’ll leak milk reading about ICE agents tearing children, some younger than Zev, from the arms of their parents — my boobs can’t tell the difference between the suffering of my child and someone else’s. And in between resting, and baby care, and doing my teeniest, tiniest part to fight back, I’ll think about how this fucked up body I inhabit is a microcosm of this fucked up world; capable of creating and nurturing, but trying to kill itself for no good reason. My fucked up and confused cells imagining enemies where there are none, attacking and destroying the good ones. But all that is later.

For now we continue onto the park where Zev flies through the air in a bucket swing, laughing, utterly delighted to be alive.

* * *

Eliza Margarita Bates is a writer and a communications consultant to the Left.

Editor: Sari Botton