This is a very quick piece, but it’s been on my mind as I’ve been trying to make sense of what I went through in 2024.

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Recently, two of my family members asked me if I had been following the Lindsay Clancy trial. I said no, I didn’t know who that was. She was on trial for killing her three children, they said. She’d had a postpartum mood crisis. Then she tried to kill herself, failing, but paralyzing herself in the attempt.

Oh god, I thought. I didn’t want to know about that. But, as it turned out, it bore eerie similarities to the crisis I went through with my child Esther when she was barely three months old.

Like Lindsay, I had become obsessed with my child’s sleep. And, like, Lindsay, after sleep training and a change in breastfeeding, I went insane. Also, like Lindsay, I was begging for help, but people dismissed me because I appeared coherent. But, I seemed to have a tool that Lindsay didn’t: my own mother had been hospitalized repeatedly for postpartum depression, attempting suicide many times, before her final successful attempt when I was twenty. This tool I wielded. Take me seriously, I told doctors. I have a family history. I will kill myself too if you don’t help me. Still, the people around me still thought I was exaggerating my struggles, that I was being selfish, and needed to buckle down and be a parent and mother to my child, to get out more.

Esther was and has always been very sleep-challenging. After bedsharing for the first few months, breastfeeding nearly every hour of the night, I felt the need to sleep train. I was already texting my father in the middle of the night about my intense anxiety about getting myself back to sleep when I knew the baby would wake up any moment and need me to get her back to sleep. Looking back, I was already exhibiting signs of intense anxiety. But then, a change in sleep and breastfeeding, similar to Lindsay, pushed things over the edge.

I hired a sleep coach. It was covered by my benefits and the coaches were also registered social works and clinical counsellors. I have so much to say about this, about how they harmed me, about how they didn’t offer any mental help when the sleep training and sudden partial weaning overnight almost caused my milk to dry up, which both caused me to go insane. My breasts leaked and exploded all over the bed, the spilled milk was my body experiencing intense grief, it felt like my child had died even though she was in the other room. Then, I stopped sleeping. I was awake for 72 hours, sleeping 2 hours only in those three days, thus starting the worst few months of my life. I went to the hospital after taking an accidental overdose of Gravol that third night, only to wake up an hour later, my heart pounding. I called my dad slurring, “I need help.” My sister-in-law came at midnight to take me to the hospital. I walked out of the hospital twelve hours later, after begging to be committed, begging for help, crying that I couldn’t sleep, saying I wanted to, no, I neeeded to kill myself, that I wanted to give my child up for adoption, with a measly three day prescription for trazodone. “Call your doctor for more,” the ER physician said. “You seem coherent and okay to me.” I went home, taking the trazodone, and I still didn’t sleep.

I don’t have it in me to keep writing about this terrible experience right now. I will write more one day, but I want perinatal mental health to be overhauled. And, most importantly, I want a better understanding on how weaning and stopping breastfeeding in particular can lead to or worsen postpartum mood disorders. No one warned me about this. No one knew this could happen. I know there are a lot of factors in Lindsay’s case which I don’t have time to address, but what happened with her was preventable.

Below are some scans of newspaper clippings my grandmother cut out, to understand what my mother was going through. This is part of a larger project I’m trying to put together on maternal mental health, hopefully a documentary:

For parents in BC, Canada, I’m posting a free resource I used in the early days of my crisis:

https://postpartum.org/

Pacific Post Partum Support Society is a small, non-profit charitable organization that has been providing mental health and emotional support to new parents and families since 1971. The program started as a grass roots initiative when a small group of mothers began meeting at the Vancouver Crisis Line office to share their experiences and support each other.

At the time, our peer support model of care was a new approach to addressing the issues of postpartum depression, and is one that has since influenced changes in postpartum support. Over the years, our programs have expanded and shifted based on the needs of the communities we serve.

Today, we support anyone who is experiencing isolation, distress, or a PMAD in the perinatal period or is supporting someone who is. This includes pregnant people, new parents, mothers, fathers, partners, non-gestational parents, surrogates, adoptive parents, foster parents, and people who have experienced perinatal or infant loss. We receive over 6000 calls to our support line per year, and that number continues to grow. If you are pregnant, have a child under the age of 3, have recently been pregnant, or have experienced loss, we are available to support you.

Below is an interview with our fifth(!) disabled parent of the series, Olivia de Fleuriot Perry. Olivia de Fleuriot Perry is a multidisciplinary artist based in Milton, ON. Working primarily with ceramics and painting, de Fleuriot Perry explores the connection with her local plant community through repetition and attentive care. Her process—often physical and immersive—combines written imagery, performative image-making, sculptural installations, drawing, and painting to fragment and reinterpret flora into colour, texture, and light, reflecting a deeply embodied, cyclical practice of care and observation. She is a parent to three boys.

Olivia Dreisinger: What were your pregnancy experiences like? What was hard? What was good?

Olivia de Fleuriot Perry: My first pregnancy was textbook with no complications. I was fat and happy (minus the bouts of prenatal depression towards the end of my pregnancy). My second pregnancy had some complications. I had a subchorionic hematoma identified at week 20, which led to a total of 9 ultrasounds until week 29 of gestation. This caused me a lot of anxiety and depression. In my third pregnancy, I miscarried at 10 weeks. I was excited to be having a girl (I thought I was, as I did the blood test at 6 weeks gestation - I now know she had already died and it was only my DNA reflected in the results… I still call her my little Fleur as I did for a month). I found out that she had stopped growing at 4 or 5 weeks gestation. I held her in my womb, deceased for 5 or 6 weeks. I passed her protective fleshy cushion. I could not see her, but I held her for a moment before flushing her down the toilet. In my fourth pregnancy, I did not want to be pregnant. I was still mourning the loss of my third child only 4 months after miscarrying. I did not share the news except with close family until 30 weeks pregnant. I cried a lot and had a trapped uterus at 14 weeks, which caused major urinary retention (I had to have a catheter for a week). Being pregnant the fourth time was very difficult for me. Even though it was hard, I actually loved my round belly.

Olivia Dreisinger: What were your birth experiences like?

Olivia de Fleuriot Perry: My first birthing experience was traumatic. I had J way too fast and only got to the hospital less than 2 hours before he was born. I had back labour, which I did not handle well, pain-wise. When they placed him on me after he came out of my body, I did not feel a connection with him. He was like a slimy alien crying on my chest. I was too concerned about the shock of it all and the doctor stitching up my 2nd degree tear. In my 2nd birthing experience, I was induced at 36 weeks as I was bleeding and amniotic fluid was detected. As soon as I felt back labour starting, I requested an epidural. I spent the day napping and resting as I slightly felt contractions. I was able to feel when my body wanted to bear down, and I warned the nurse that I would birth quickly, so she ran to get the doctor. E was born 10 minutes later. It was easier to connect with the slimy alien on my chest (even though I tore again) as I already had the experience of bonding with my first child. The third birthing experience, I made sure to go straight to the hospital as soon as I felt contractions and request an epidural right away (before back labour even started, as I knew it was coming). I again relaxed until I felt the need to bear down. The doctor arrived right before A was born after 5 minutes of pushing. I loved the baby on my chest even though there was a shroud of sadness remembering Fleur.

Olivia Dreisinger: What were your postpartum experiences like?

Olivia de Fleuriot Perry: In my first postpartum experience, I had postpartum anxiety (I didn't know it at the time). I was fixated on controlling everything that involved my baby, causing me to seclude myself for months. J did not want to breastfeed, so I pumped and bottle-fed him for the first two weeks. Thankfully, he eventually took to breastfeeding, and I breastfed him for 12 months until a few days before I went back to the MFA program at Emily Carr University. J went to daycare, and I went to school. During my second postpartum experience (during a lockdown in 2020), I had postpartum depression. My first child was 3 years old and needed me socially, while my premature baby breastfed every hour for 4 months (with 15-minute naps every hour). I realized I needed medical help and had therapy (online - I learnt to focus on the emotion initially and not the behaviour when parenting my firstborn child. This gave me something to focus on when difficult moments arose instead of feeling like I couldn’t escape) and started antidepressants. The medication I took helped me for 2 weeks of every month. I had major mood swings from elation to suicidal ideation on a monthly basis. This went on for 3 years. I did not make much art during this time. My third postpartum experience was after the loss of Fleur - the pain was so unbearable I was afraid to let any emotion out. This caused me to change the antidepressant I was using. During this time, we were having financial insecurity, I fell pregnant with A, and my partner lost his job (caused by post covid events). This led to us moving from BC to ON to live with my parents. They gave us three bedrooms and lots of love. We still live with them, and we are thankful every day for their support. We have made use of the space we have. My partner’s and my bedroom is also his office; A’s room is also my studio; and E and J share a room. In my fourth postpartum experience, I had postpartum anxiety and depression. A slept well from day one and had no issues breastfeeding. I only had the capacity to take care of my baby and not my older two children for the first 6 months. I slept in my baby’s bedroom for 6 months separate from my partner. When I was 8 months postpartum, I finally upped the dose for my meds to the right amount. I started painting again, and I have not stopped since Sept. 2024.

Olivia Dreisinger: How has disability and illness impacted how you approach being a parent?

Olivia de Fleuriot Perry: My children made me who I am today. If it wasn't for them, I would not have sought help. I went through that hardship to truly discover myself, and through that transformation I am now making art prolifically (in part to manage my mental illnesses but also because it makes me happy). I hope to one day transition from taking antidepressants through cognitive behavioural therapy techniques and trying ADHD medication on a regular basis. I have learnt to pivot - when I feel an episode rising, I change my environment. I go for a walk, and I communicate with my spouse if I need a minute to make art, lie face down on the bed, or read a book. We are a team now, which makes a huge difference (we have learnt how to communicate with each other over our 13 years together). My partner knows when I am slipping into depression and that I need to get out and do something. He has learnt my warning signs. I, at times, feel guilty for burdening him. It helps to remind myself to breathe and change my environment - I have agency to pivot and do something else (this has caused the problem of never stopping, always moving, which is a problem I need to address - working on it… kinda). This has led to my current art practice where I make alongside my children. We also go adventuring together at the creek near our home, which is my main source of inspiration for my creative research. I actively identify what is causing me to feel stuck, and I make a mental shift to include the barrier, often making it pivotal to my movement/making. I have a fear of sinking into depression again, being so down I can't move for days. My lethargy was crushing… thinking back, I have realized I was in a constant depressive state for 20 years since I started puberty- what I thought was my norm was not who I was. I was living with an unspecified mood disorder, compulsive OCD and ADHD without any help. My symptoms were normalized, or I was told I was too sensitive or too quiet or too aloof, or too sullen, or to smile more. Now, I look back to my childhood and see the 5-year-old girl who spent hours in the garden amongst the flowers, the trees, the birds, and the bugs. I consider that girl’s face, mind, and spirit standing before me, smiling – she knows she has been found.

Olivia Dreisinger: What advice would you give other disabled people thinking about having a family?

Olivia de Fleuriot Perry: Be kind to yourself; don’t pay attention to people who are negative, criticize, belittle you, or cause anxiety FOR NO REASON just because you are a new parent and they think they have the right to make you feel less than. Communicate!!! Communicate to your partner, your family, your children, your friends, your doctor, your therapist, psychiatrist, psychologist, etc. (I finally got properly diagnosed and medicated through persistent communication which was not natural for me to do but I was desperate to be better for my little humans) and learn what you need to pivot/train your brain to go to that place if you can’t physically move or get away from your precious triggering beings. It is incredible how secure my kids feel with my fluctuating moods because I communicate when I need space or if a particular activity is causing me to be overstimulated. I am clear and direct with my boundaries. This avoids exploding or imploding bodily responses. My kids know what I can handle and what I can’t, and they respect that because I have clearly communicated how certain noises or activities affect me. Try to shake off the guilt (easier said than done) - do what is right for YOU and your child. Don’t sacrifice your physical, mental, or emotional health for your kids. Practice methods (I suggest cognitive behavioural therapy) to cope with the times you can't escape the nightmare of raising children, and cherish the moments when they are snuggled in your arms like little angels. Write down what they say! I have running notes on my iPhone of quotes from my children with the date and time they said it. Again, listen to what people have to say, take what resonates with you, and ignore the rest if it's unhelpful. Love you all <3

Olivia Dreisinger: Anything else you’d like to say?

Olivia de Fleuriot Perry: This is my experience; remember, everyone experiences this stage of life differently. Take the nuggets that are helpful and ignore the rest! There is not one way to parent; this is how I have learnt to cope and thrive with my ongoing mental illnesses. I love being a mom, and my kids are my everything (all 4 of them).

I’ve also been commissioned to write a short story as part of an exhibit my brilliant friend, Alexandra Box, is curating at the Gardiner Museum. I’ll try to share more once there’s promo for that, but my story is sort of my first attempt at trying to sort through my terrible postpartum crisis when Esther was first born. I’m so thankful that now, two years and a bit later, with psych and family help, I am mentally stable and a happy, present mother to my child.

Which brings me to my last update, which may only be relevant to other people who have experienced or may experience a postpartum crisis—I am finally almost tapered off of one of my sleep medications. I sort of wrote a bit of a post about this crisis here, as a refresher:

Basically, I started taking trazodone 175mg for insomnia split into two doses at night (one at the start, one in the middle of the night). I also worked my way up to 100mg of sertraline (Zoloft) for debilitating anxiety, which also made a difference for my sleep anxiety. Then, I found I was still having a terrible time coping with infant feeding and sleep, and switched to taking quetiapine (Seroquel) 25mg at that middle of the night wakeup (so 100mg trazodone at start of night, followed by the quetiapine). Why am I writing this? Well, I found it SO HARD to find other people writing about being medicated while breastfeeding. I read so many posts about people with PPD/PPA (postpartum depression/postpartum anxiety) where they just “made it through the other side” without medication, which made me feel so alone. I also felt like I was going to poison my daughter nursing her on medication, which I know was just the anxiety, but she’s happy and healthy and just fine. I just needed other stories to reassure me that she would be fine, but couldn’t really find any examples. I was also so terrified of being dependent on quetiapine for sleep, but things have gotten a lot better, which is why I feel ready to come off of it. I’ve always had issues with sleep, so maybe I’ll just keep taking the trazodone ;).

Perinatal mental health has come a long way, but it still took so much advocating for myself that I was not well and needed serious help and intervention. Perinatal psychiatry saved my life and gave me the bond that I’ve always wanted and needed with my child. I feel ready to try to write a longer piece about postpartum anxiety to bring more attention to it soon <3

I’ll end this post with Octavia Butler’s affirmations that she will be a bestselling writer.

For myself: I will get an agent and be published. So be it! See to it!

Grab the PDFs here.

168 pages

Edited by Olivia Dreisinger

This 2-in-1 anthology collects writing by nine authors about disability, animals, and the environment. A werewolf with PTSD and an environmentally ill AI are featured alongside human characters living with brain injury, chronic pain, neurodivergence, and more.

Contributors: Alexandra Box, Olivia Dreisinger, Sophie Helf, Bára Hladík, Cypress Marrs, Koyote Moone, seeley quest, Vanessa Santos, and George Wu Teng.

Companions cover concept by Sasha Zamani/ Earthbound cover concept by Vanessa Santos and Sasha Zamani
Artwork by Audrey Leshay

Olivia Dreisinger calls up fellow disabled parent Amy to talk about their contrasting postpartum experiences. The two share stories about pregnancy, postpartum life, and the wild demands of breastfeeding and weaning. They talk about the chaos that is baby sleep, postpartum mood disorders, and figuring out parenting while juggling chronic illness and meds. By the end, they’re ready to start a new parenting trend: weaning cakes—because saying goodbye to breastfeeding deserves its own celebration!

Check out Olivia Dreisinger’s online exhibition “Weaning” here: https://thenewgallery.org/Weaning-Oli...


Lithium in breastfeeding sources:
A study of 16 babies in Barcelona, everyone does great: https://www.ncbi.nlm.nih.gov/pmc/arti...

The results of a small 10-baby study in the US and info on how breastfeeding with lithium is safer than we thought: https://womensmentalhealth.org/posts/...

A review of 13 studies covering a total of 39 babies; 20% experience adverse events but they are all short term. https://www.frontiersin.org/articles/...

This is a 30-baby study in Sweden and everyone does great: https://onlinelibrary.wiley.com/doi/f...

Many studies’ findings on infant lithium levels and side effects, collected: https://www.ncbi.nlm.nih.gov/books/NB...

Cripple has graciously printed off my Death Cult essay.

You can buy a copy here: https://cripple.info/things-shop

Info: Death Cult by Olivia Dreisinger is a deeply personal and critical meditation on suicide, disability, and the cultural forces that shape how we think about death. Anchored in the author’s experience of her mother’s suicide, the essay weaves memoir, cultural criticism, and historical research to examine both personal grief and the broader right-to-die movement.
• 4.25” x 6.87”
• 34 pages
• Published by cripple, 2025.
• Price in USD.

If you’re in Canada, I’ll be mailing it to you directly to circumvent the US tariffs.

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A sick person’s level of health is never static. They’re like one of those drop tower rides at amusement parks, the ones where you shoot to the top, then, suddenly and without warning, plummet, only to rise again a bit, only to, once again, drop violently. These highs-and-lows can all occur within a single day. They can also occur over lengthier periods of time: months, years, decades. One birthday, you’re cutting the cake, thinking “here’s to a new you,” the next, you’re barely able to leave the bath. Will it be a good day, or a bad day? A good June, or a bad June? A nice year, or a difficult one? And, for insomniacs: will I sleep tonight, or will I not? It’s always easy to declare, on those good days, that you’re no longer sick, that you’re “cured.” It’s also humiliating when the next day rolls around, and you’re not anymore, waking up in agony.

It really isn’t good mentally to continually go through this (getting better and then worse and then better again). I would swing from one fear—that my illness was permanent—to my other fear—that my illness had all been made up. I thought of this mental state as “health dysphoria.”

If anyone wants to sign up as a paid subscriber, it will help go towards writing my novella. Hoping to get some writing grants too, but I won’t get my hopes up there.

I’m the main artist on episode 2. I was pregnant with Esther while filming this (so I don’t look and feel my best, had to throw up during breaks lol)! Fun series featuring disabled artists in the PNW:

Inspired by a recent near-death experience, Cynthia Decore sets out to create an anthology of horror stories that turns their most painful moments into opportunities for advocacy and conversation. They meet Disabled artists across Western Canada to explore ways art and media can transform communities. Where can we find solidarity in shared struggles of overcoming access barriers, creating connections in the face of isolation, and finding the courage to start over after everything falls apart?

I’m really glad I was invited to be a part of this.

You can watch here.

I also took some pics of the host Cynthia, as well as made a custom 3D model of them!

Exhibition description:

In Weaning, Olivia Dreisinger offers an intimate exploration of the complexities of early motherhood, merging technology and a traditional aesthetic to challenge perceptions of motherhood as a “low-brow” subject in contemporary art. Dreisinger utilizes a photogrammetric technique to produce a three-dimensional, distorted, painterly quality to her images, featuring scenes of milk, diapers, and breastfeeding-approved medication.These images document her personal experience nursing her infant daughter while navigating a postpartum mood disorder triggered by sudden, partial weaning, intervening in the larger history of breastfeeding art while foregrounding something not typically considered in mainstream discussions about breastfeeding, namely the psychological toll of breastfeeding. Dreisinger’s status as a disabled new mother in part selects the process and aesthetic of her work; photogrammetry enables her to document the dynamic nature and complexity of breastfeeding and postpartum life.

Again, go check it out! I’m quite proud of the images I was able to make during one of the most difficult periods of my life. 💋

Image description: Olivia and her baby nurse in a side-lying position on a bare mattress on the bedroom floor. She cradles her nursing baby close to her chest. Olivia is white and has short brown hair with bangs. She wears a burgundy top and ripped light blue jeans. The baby, dressed in a green and red outfit, nestles against her body in a moment of quiet tenderness. The room is sparse, with wooden flooring and soft, natural lighting that gives the scene an intimate, vulnerable feel.

Below is an interview with our fourth disabled parent of the series, Emily C. R. Hill. Emily is an artist and writer based in Vancouver, Canada. Her practice is multidisciplinary with a base in performance. She holds a certificate from Helen Lefeaux School of Fashion Design, a diploma in Textile Arts from Capilano University and a BFA in visual art from Emily Carr University. She has worked as an actor, costume designer and artist. Showing in Canada and the U.S.A. Forthcoming is Pom Pom Strokes at CSA in Vancouver, June 2025.

Olivia Dreisinger: What were your pregnancy experiences like? What was hard? What was good?

Emily C. R. Hill: My first pregnancy started seven years ago. As a timeline, I do feel like I have cellularly rebuilt myself anew, from the twenty-nine-year-old person I was then. 

I remember being extremely naive, excited, and working full-time in close company as an artist assistant, through severe and secretive morning sickness. I would buy myself a liter of lemonade every morning, as it was the only thing that masked the unpleasant taste of throwing up so much for the entire first trimester. 

I was stressed, mostly about housing, and throwing up constantly. I couldn’t really move after work, to make my own artwork for an upcoming exhibition I had at a small Vancouver gallery, Duplex. I remember the day I woke up, not about to vomit, and was so excited. I had just enough time to hustle out some work for this exhibition—about two weeks left to crunch. 

I announced my pregnancy to friends and colleagues at the opening of my exhibition in September 2017, ritualistically working with some themes around making, vulnerability and pregnancy. I sang an altered lullaby of ‘Nun’s bridge is falling down’ as part of the exhibition performance. That experience set a bit of a tone to deep dive into my body as a life/art collapse.

A month before giving birth, I had an extremely uncomfortable rash break out, starting on my stomach, eventually covering most of my torso, and reaching down my arms. My midwives never called it puppp officially but it was an inescapable itching that lasted about two to three weeks. I did all the diy treatments for puppp, including ordering some ‘tar’ soap. I think it helped a bit. Thankfully, it calmed down.

My first birth kicked off at bedtime, at thirty-seven weeks, with me thinking I was leaking pee involuntarily.

The second pregnancy was more uncomfortable in a heavy way (but no barfing!). I was way too active with my almost two-year-old. I pulled a round ligament and couldn’t walk or move my legs forward at all, for two days very near the end. 

It was also a pandemic pregnancy that caused a unique calm period between March-May 2020 just after my first turned two. My family of three had those two months in the most strict lockdown to get ready for baby number two.

I was very hypervigilant with the fear of contracting Covid-19. In hindsight, I adopted a medical type of perfectionism about hand hygiene and such that started a slow burnout. My second child came in a rapid birth, in line with a term “precipitous labor,” lasting only 3.5 hours at home, 4 days before the due date. There was less time for my muscles to adjust to birth, and a slightly bigger baby/longer term. The pain levels reached new highs from my first birth and I was surprised by how different, more intense, very otherworldly it felt.

Olivia Dreisinger: What were your birth experiences like?

Emily C. R. Hill: All in all I had two very similar births: home births, squatting in the bathtub. The births took place in two different houses, luckily fairly smooth and athletic-like in feeling. My partner was very supportive of me as a birth partner. I love Vancouver B.C. Midwives who, as a team, really felt like this rare wisdom to guide my birthing person experience. They gave me a lot of confidence. I wasn’t attached to having home births if that wasn’t how my cards fell.

Olivia Dreisinger: What were your postpartum experiences like? 

Emily C. R. Hill: To quote a favourite writer, Maggie Nelson, on postpartum feelings, it felt like I had just been through:

a massive physical event that has literally rearranged her organs and stretched her parts beyond comprehension and brought her through a life-or-death portal

The body sensations hit so many new notes.

After my first birth, I was a bit stunned to find out my boobs were standby milk balloons, about to be overfilled a few days postpartum with 1980s style milk implants. My milk came in in just one boob after my first kid (latched one side only in the first 24hr! Beware!) and I lived with a D left and F right boob on and off untilI got pregnant again eighteen months later. Total vanity check. Symmetry is overrated anyway.

In the immediate postpartum, an enjoyable part was just feeling these new heights. A surreal bliss is maybe a sign/flag of mental health issues, but it was really fun!

My second birth conjures a severe warrior vigilance that was part pandemic lockdown and part newborn with a two-year-old. I have a hard time teasing out what a non-Covid backdrop would have looked like. I had to bounce back in a way that seemed unreasonable, but situationally necessary. The crash of social supports/some financial stability/health anxiety all came as a package. My partner luckily managed to stay employed and supported us, with reduced hours. He works for the local museum and there were talks of the place closing its doors completely in the early days of postpartum 2020. So just lots of loops were being thrown. 

Both experiences I was so motivated to respond to this new teeny tiny baby, and fumbling through it for a bit. I am proud of what I achieved parenting. While I can thank my partner for being the parent to muscle the most good dinners, and keeping the basics of regular life moving (i.e. laundry hero and pandemic grocery hero), I became overly invested in moving our emotional development forward, to become the best parents we can be to some enormously sensitive and energetic kids (now I understand to be neurodivergent). My memory has this early phase with my first specifically being like a kind of over-energized ballet, fuelled by pure excitement and a dash of terror at the responsibility of getting to parent.

Parenting one, then parenting two felt more like it equated to 1 x10 as in = 10 kids. Something about being outnumbered and being between the conflict of two small siblings had a unique triangle that felt intense. My joke on parenting two was that it felt like my abilities shifted from running an esteemed anxiety-fuelled ballet—perfectly timed naps and playtimes and developmental activities—to now just running a low-key dive bar with spirit more than any planned choreography. Like everyone was having an okay time, but no more impressive moves. No more staying ahead of anyone’s needs including my own. I had read a bunch on having siblings close in age, and chalked it up to playing it by ear and going with the flow. (I did take some notes on tandem nursing from the La Leche League website, that was very helpful.) However, the reality of having the two of them, left in my hands shortly after giving birth, was way more severe than I had mentally prepared for. I had been able to stay ahead of my first child’s needs too well. I didn’t like distress or conflict. And now I couldn’t stay ahead of it, and I was kind of stunned by what it did to my nervous system. I was happily co-sleeping with both babies at first, but about a month into that I needed to get my two year old to co-sleep with my partner in another room because the kids would wake each other up. That was not working out well for my brain.

This all caused me to feel like I entered some kind of survival zone. I was doing a lot of activities like an efficient robot scared to lose momentum during the day. I was also being told by my doctors and midwives I was ‘coping really well,’ but had a lingering feeling that I was creeping towards a new level of burnout I hadn’t experienced before around 6 weeks postpartum. 

Olivia Dreisinger: You disclosed to me that you received your diagnoses postpartum. What was it like getting a diagnosis after having children? Did this shift anything for you re: how you viewed your pregnancies? Being a parent?

Emily C. R. Hill: This section is probably a book, so the short answer is:

Thank you to my children, for uncovering the probable, generational thread of undiagnosed autism spectrum disorder (ASD) and ADHD (AuDHD to make it cuter). I am the first in my family to now have both of these neurodivergent conditions diagnosed. But, as it stands, they are considered very genetic mental disabilities. So, understanding this part of myself has helped tremendously to parent with the support of just knowing some of the dead ends and sensitives and having a map of my own brain type. 

Understanding my brain in terms of vulnerabilities and strengths it might hold simultaneously seems like a good starting point. It seems like a lucky era for an AuDHD parenting community, with visible storytellers, disseminating first-hand experiences. Historically role models and information from people with lived experiences was even more inaccessible and stigmatized. Mental healthcare, through social media, is a bit of a shaggy world. However, I feel lucky to have self-publishing people to learn from and I highly recommend Casey Ehrlich, Ph.D who has first-hand experience with parenting with Autism and PDA: Pathological Demand Avoidance / Persistent Drive for Autonomy. She provides a model on how to navigate the difficulties of parenting while wearing both a parent and research hat. The goal is to help bring peace to nervous systems that idle rough. 

Olivia Dreisinger: How has disability and illness impacted how you approach being a parent? 

Emily C. R. Hill: Babies are so raw and I was very drawn to all the gentle/attachment/1developmental science/parenting memes and flow of info on social media circa 2018. The digital stream of information-overload really encouraged a motivational feeling in me, that this was going to be something I did, all in, for some time. Responding to this small person and looking for more opportunities to learn how to care for them in a very AuDHD information hungry way.

It was through this looking at my kids, looking at their needs, that I could see parts of myself in a new way. I could see sensitivities I had kind of abandoned in myself, but also noticed how, when pressured (like dealing with so much screaming), I internally acted like a triggered child.

When the postpartum with two small kids came on in full pandemic mode, I felt oddly lucky. Maybe it pushed me to a breaking point of not being able to meet my kids’ needs, and my needs ‘well enough’ by my own logic. It kind of felt like I was just burning holes in my brain and I couldn’t push aside the something that felt off anymore. 

Maybe burning out is physically like intense emotions burning real holes in your brain? Metaphorically my brain was on fire with stress at some point in 2021.

When I started to be very concerned about myself, I also started reading more and came across Borderline Personality Disorder2 for the first time. If I try to describe the niche of medically recognized Borderline Personality Disorder, that is called ‘quite’ or ‘Internalized’ BDP, I would say it is a sweet and common affliction in sensitive people who have lost touch with their own basic emotions. We see a problem and quickly find a way to solve it, like a fire tries to find more to burn. It’s an efficient affliction. 

I was a child actor and was coached to make eye contact and smile as a young professional trainee. I think pathologies rub many people the wrong way, but I actually got excited when I started to understand that my drive to do well, to mask, was kind of a self-preservation trick. Technically this is a severe mental illness or personality disorder. 

Masking crosses over to an ASD coping strategy too. Once I was meeting with a psychiatrist, they brought up ADHD first and eventually ASD. I have suspected (still undiagnosed) that I'm very dyslexic since my teenage years, and knew I was compensating for things feeling more difficult than seemed reasonable in many aspects. However, I really didn’t understand the extent of this at all. I had developed very convincing masks to hide my own needs from myself and a sense of humour about my quick reflex to smile. I used to have a lot of anxiety attacks as a kid and I think at some point I cut myself off from the ability to have one, or very rarely. I feel like without knowing how anxious I was, there was just a cliff to fall down. There was no fence to notify me of my edges. I hope the next decades will untangle an old unhelpful stigma blocking mental health interventions as it is a vulnerability and human fragility that can feel so unstable (but so human). 

I hope the future of healthcare will make better ties between undiagnosed AuDHD and BPD, especially in women who internalize often, as this is now part of my personal brain map.

My lowest point postpartum, I actually wasn’t suicidal. I have a gift or a curse to hold most of my storms inside, but I felt like I was about to blackout. I was holding in an extreme amount of rage, like I was drunk, and couldn’t remember the day, time, or anything easily anymore. I was still appearing to be ‘functioning well,’ but edging so close to some new cliff I didn’t want to trip down. I have seen two of my siblings experience psychosis, so I had a pretty good idea of where I didn’t want to land. I think of psychosis as an emotional car accident. It can do a lot of damage to the brain. Pacific Post Partum Society is a wonderful organization who I highly recommend new parents to reach out to. They really encouraged me to dig my heels in, and I fought tremendously hard to talk to a psychiatrist who actually specializes in personality disorders (hard to find). That proved to me that a lot of healthcare is very old-fashioned in recognizing what personality disorders (PD) might look like. PD’s unfortunately hide standard chronic depression and anxiety really well which prevents a lot of people who seem ‘efficient’ from getting supported. The people that diagnosed me were actually able to listen to what I was saying and understand. Extremely therapeutic. 

I had previously, postpartum 2018, done some feminist narrative therapy and loved it. Post-diagnosis in 2021 I got access to a dialectical behavior therapy (DBT) group therapy that helped identify triggers and make space to process things I hadn’t let myself process I think.

I like a Susan Sontag quote on Personality:

 Personality, that is, the presence of flaws.

Personality(flaws) + disorders(flaws) are like doubling down on negatives. I like the potential that people with ‘big’ personalities work on achieving the electrical -neg + -neg = +positive, and hopefully transforming an electric human experience into something that articulates what artificial entities try and fail to achieve. Unpredictably. Creativity. Humanity.

Pathologizing human flaws has a terrible history, one that makes sense to be fearful of. I had researched a medicalized term for 'Vapours' and ‘Hysteria’ that feminist histories are tangled up in as a psychological horror genre. What is inflicted on people just for existing as femme in a patriarchal society remains a Shakespearean tangle. It distorts things. Many feminists reject the DSM entirely, but I think the goal set for me is to tease out whatever helps.

The brain, as a material, has pathways and the highways or medicalized ‘disorders’ seem like quick and dirty fixes to get things done. I do think DBT has given me many more scenic routes for my own highway thoughts, like a DBT recipe book. I like to think of therapy as a way to tend to the quality and enrichment of the soil we have access to as a person. (The soil here being our brain.) Is it paved? Dry? Or nutrient dense land for growing new thoughts? I encourage everyone to get in the dirt when it comes to the brain. 

Olivia Dreisinger: What advice would you give other disabled people thinking about having a family, or about parenting?

Emily C. R. Hill: I am very grateful for the experience of being a parent. I value, in humanity, in art, to be openly vulnerable. Being a parent makes you extremely vulnerable in new ways, that can feel like too much. I think of disability like personality, that is, the presence of flaws. It’s an honor to identify with and so very human. Any advice I would give might have to be as general as for people with just a personality too. 

When I’m really struggling personally with the demands of having a family as a person with a disability, I try to remember being a child in a family. I aspire to be an adult that I would have always felt safe with. I keep my values close to heart. I also hope to experience my flaws, disabilities, and challenges as I would want my kids to—as just human qualities, both expected and acceptable. I want to model a deep willingness to repair my relationships, with my kids and others when I do make mistakes. 

I wouldn’t want my children or anyone to feel pressured to become a parent. It would be best as a very open question, a choice. It can still feel too scripted that parenting is the aspiration of adulthood in subtle and unsubtle ways, while simultaneously rejecting the art world bias of birth not mixing well with art. 

A gift of parenthood is seeing how impossibly precious and opaque each little human life is, while also being in awe of anyone who takes on the soul-work of parenting. 

I’m writing a brief postpartum update. Things went bad about 2 months ago for me after suddenly weaning multiple breastfeeding night feeds (hormone hell I was not warned about!) and I (eventually) got diagnosed with postpartum anxiety and insomnia. I had to go to the hospital after 4 days of only 1 hour of sleep each night and was prescribed trazodone off-label for sleep for a few days. It was terrifying. Then things got worse. I still wasn’t sleeping and I began panic calling family members at odd hours of the night about not being able to sleep. Then I started really losing my ability to cope and saying I wanted to give Esther up for adoption (a truly awful intrusive thought) and becoming very suicidal. That’s when I had to accept I needed long-term medication and things have slowly gotten better, but it’s still been incredibly hard. My mother had severe postpartum depression after each child and had to be hospitalized sometimes for months at a time postpartum. (I’ve written about her health struggles and her eventual suicide here.) I’ve been waiting to do an update because I didn’t want to add even more anxiety to my days. I’m now part of a perinatal psychiatry program and will be followed for a year postpartum. I’ll write a longer essay at some point when I have more emotional space — probably titled Traz wife since I’m still taking trazodone for sleep 💁‍♀️.

If you’d like to support me in this time since I’ve been unable to take on any freelance work (and I unfortunately don’t receive any maternity pay), consider purchasing a paid substack subscription.

Below is an interview with our third disabled parent of the series, Dominic Quagliozzi. (You can read the other previous interviews here and here.) Through various media, with a focus on drawing, painting and performance, Dominic Quagliozzi's (he/him) work deconstructs his lived experience with chronic illness and disability to explore social relationships and the domestication of illness. His work aims to highlight the interdependence needed for healing and notions of longevity within personal and shared experience. 

Olivia Dreisinger: As the non-birthing parent, what was the pregnancy phase like for you? What about the birth experience?

Dominic Quagliozzi: Well first off I wanted to mention that my wife and I had to do IVF because of my genetic disease/chronic illness. And I owe everything about being a parent to my wife, who overcame a lot to give birth and I was in such awe and admiration of her the whole time. I was born with cystic fibrosis to which 97% of men with cystic fibrosis don't have vas deferens and because of that we knew when we first started getting serious that we wouldn't be able to have kids naturally. When we decided it was time for us to have kids, I wanted to be fully present, cooperative and supportive in every aspect of the IVF journey, the birth, all of that because I honestly felt like it was my fault that we weren't able to get pregnant easily and cheaply. 

We found out we were pregnant after three cycles of IVF, one that led to a miscarriage, another that led to a failed embryo transfer, and the third was a successful embryo transfer into successful pregnancy. The first two attempts left us very cautious and always on edge throughout the whole journey. I felt like I needed to be the “rock,” and handle all the medical, hospital, aspects of the IVF and birth- for my wife, because she coincidentally is/was very medical-averse and doesn’t like giving up control or power to doctors and has a fear of needles. Like a literal bodily reaction, fainting etc to needles and it was very traumatic for me. I went to every appointment with my wife, I supported her as best I could and I know there were things that I probably should have done and didn't, but I think overall I did my best to be present and to be capable of supporting her and whatever she needed. The birth experience was really interesting because we were in Los Angeles and we didn't have any family members around so it was just kind of her and I. We were getting past our due date and because of that her doctors were concerned that the baby was getting too large (due to her gestational diabetes), so they scheduled an induction pregnancy. I wanted to be strong for her and lead by example - as someone who has been very medicalized because of my chronic illness - so I tried to coach her as best as possible. When she got the epidural, I tried to be present and listen to everything the doctors and nurses were saying and, you know, obviously all of that couldn't even prepare me or her for what the actual birthing process was like. I had the music playlist all queued but forgot to play it. 

The first part of the birthing process was pretty smooth and easy. There was a lot of anxiety because we weren't necessarily sure how it was going to go obviously, but then after a few hours new people, new members of the nursing staff and the NICU came in and they were wheeling in machines we were unfamiliar with and that's when we started to get a little concerned. But I think this was were my biggest role was fulfilled- being her calming force. I am pathologically optimistic and she is a very vocal realist (don’t let her hear me say pessimist). But I think my presence in the delivery room and lifelong resilient attitude to still actually being alive helped her not go to a very dark place and continue to push and to work to get our baby out. At the start she was hitting all her benchmarks and then things started to unravel pretty quickly and they were worried that the baby was going to get stuck or have shoulder dysplasia and so they had to do a few maneuvers to help get the baby out and that was, you know, shocking in the moment and when our son was born he was very purple and wasn’t making any noise for what seemed like forever, but it was only a few seconds. We both seemed to have this sense of dread flooding through us and then all of a sudden he just started screaming and crying and the relief that we both felt, the joy and the timelessness of that whole experience was just absolutely wild. He went to my wife first on her chest and then shortly after I got to hold him shirtless and that was the most moving moment of my life. 

Olivia Dreisinger: What was your postpartum experience like? What was good, what was hard? 

Dominic Quagliozzi: The postpartum experience was actually really great for both of us. It had its challenges trying to coordinate the schedule of his feedings and his sleeping and things like that, but for the most part we both really enjoyed spending time together and with our son and I actually felt more secure than I expected to feel. I think my wife felt a little bit more cautious and careful and maybe it’s just because of my history with my own body and it’s resilience but I felt a little bit more in control than I actually thought or expected to be. We both had pretty specific roles in how we wanted to approach the care, especially with a newborn. I was taking night duty so my wife could sleep. We did breastfeeding and bottles and I would get up at the scheduled times to feed him his bottles overnight. We had a period of time where we had the bassinet in our bedroom so when he needed to be changed or fed I woke up and walked across the room and did that so my wife could sleep. I feel like we both got really lucky because right from the beginning my son was a really excellent sleeper. We did have obviously the exhaustion that new parents have but it wasn’t anything that overly lingered and we got into a pretty solid routine that we were both pretty comfortable with which I think helped a lot. 

It was hard though because, you know, you go from being two people walking around, going to work, having fun, going to the beach and then all of a sudden you have this full-time responsibility that can’t do anything for itself, but I think we both took the time to acknowledge that we wanted to slow life down and I wanted to do as much as I could for her and it was a very new experience for both of us, but our relationship was kind of built on these new experiences with a lot of unknowns especially because of my health issues. In the past, within our relationship, I had a lot of surgeries. I had a lung failure and was in a coma for 5 days. I had a double lung transplant in which we waited on the lung transplant list for three and a half years. Also all the time it took to prepare and get organized to do the IVF cycles and during that whole process my wife ended up in a coma for 4 days due to a complication from a fibroid surgery so we were both kind of actually just relieved that we had this major accomplishment together that actually was something that worked out for us. The care and the love that we felt for each other and for our son was just, you know, I feel like it was like a constant high.

One of our parenting goals we both agreed on was to raise him to have independence and flexibility, so we started going out with him after a week. We brought him to restaurants, to the park, and things like that. But when he was 3 months old the Covid pandemic started and lockdowns became the thing.

Olivia Dreisinger:  How has disability and illness impacted how you approach being a parent? 

Dominic Quagliozzi: I think my having a disability and chronic illness actually better prepared me for being a parent. I think that I’ve seen the resilience of my own body and the ability to adapt and maneuver under stress and pressure, the ability to face the unknown and have a positive outlook, contingency plans and leaning on community and family for support when needed, like, these are all survival strategies that my wife and I have gotten used to over the years through my lung transplant and through our IVF journey. So, I think we were really both prepared for that.

Me specifically, I tend to be mega-optimistic and I tend to look at the bigger picture a little bit better. I live in the moment more because I know that at any point my health could deteriorate and I could no longer be here so I really do savour the moments with my son. I feel like I pass on to him an ease of, you know, to enjoy the moments and to build upon the important things in your life. I teach him about caring for others, being empathetic and observant of your own situation and others situations, and, you know, I pass on the idea that life is about community and the relationships you have. I know he’s only four-and-a-half-years-old so obviously this is like, you know, foundational things that I hope that he grasps. During his first year and a half of preschool, where he’s been more social and meeting other kids and interacting with other adults that are not his family, a lot of people have said to my wife and I how caring he is and that he tries to talk with everyone. Things like, if someone falls or it seems upset he goes over to them and asks how they’re doing and I do think that's actually a direct correlation between having a parent with a disability.

My son has seen me have blood sugar crashes. After my transplant, I got diabetes and so he’s seen me with blood sugar crashes and laying on the floor saying I have to call 911 and you know I've called 911 and the firefighters came. We were eating breakfast one morning and I had tell him, even though my speech was slurred, that there’s going to be firefighters and some police coming to the house and if daddy falls asleep and doesn’t wake up you know they're going to help me and not to worry too much and, you know, so he’s seeing these type of scenarios firsthand and I think when he goes out into the world and sees other kids or other people he can kind of gauge how they’re doing and that registers with him and I think that's really interesting and important.

The times I’ve been in the hospital for extended treatments for rejection of my transplant, he has stayed with my mother, or stayed home with mom and we just tell him daddy is away for a few days. I’ve gone on work trips for an artist residency for a week, and to Australia for a show for 10 days, so it’s not totally out of the ordinary for me to be gone. And we will tell him about it all when he’s older.

Olivia Dreisinger: What advice would you give other disabled people thinking about having a family?

Dominic Quagliozzi: Advice I would give…? I would say … obviously parenting is very hard - there’s a lot of logistics, there’s a lot of responsibility shifts. My role for my whole life was just taking care of my own self and I put myself number one, my health, you know, trying to stay on insurance and have enough money to pay for medications and equipment that I need and things like that. That stuff doesn’t necessarily go away so you have to be very prepared, you have to be very willing to put yourself second, like take care of your own health, but know that you’re going to have to put your children first. 

I would say the most enriching experience of my life has been becoming a father and I would definitely encourage anybody to do that. I think having a supportive partner is of the utmost part of my success as a parent, for sure. She’s taking on more than double responsibility because you add in the fact that there will be times when I’m in the hospital and she’ll have to do double time as a caretaker, for me and for our son, and probably still have to go to work and so it’s a lot of logistical things trying to figure out child care and making mortgage or rent payments and having money for food and clothes and a little bit of travel and whatever there is but I think it's definitely worth it if you pace yourself. Make sure you are putting love first and being present and laughing at the mistakes and realizing the bonds that you’re building are much more important than the things you have. Yeah, I think those are some of the pieces of advice I would give. 

Olivia Dreisinger: Anything else you’d like to say?

Dominic Quagliozzi: The last thing I'll add is something that I’ve been thinking a lot about or actually more like feeling a lot often. I don’t really know how to talk about it or address it specifically in our conversation above, but this idea, I don’t even really know what I would even call it, but it’s like this notion of a kind of guilt or it’s like a survivor’s guilt for something that hasn’t happened yet. See, I can’t even articulate it. It’s a challenging state to be in.

As someone living on borrowed time, literally as a double lung transplant recipient, I’ve gained back life and ability after years and years of high levels of debility and disability. But after 5 years of being post lung transplant, the survival rate is less than 50%. So I see that as a coin flip every day, now I’m 9 years post and the survival rates go down every year. And I’ve been in chronic rejection for over 4 years, with declining lung function, diabetes, worsening kidney function… I’m not even sure how to talk about this. 

This is from my notes, just a written piece that I’m working off of to try to better articulate and understand and harness this feeling:

“Sometimes I feel guilty for enjoying my son too much, like I can’t get too overjoyed because the possibility of not being here for his whole life crushes me. I see this trade war going on, the capacity to get so high on the love for him contrasting the devastation of not being there for him. Don’t I dare tempt fate. If everything is just mid I could coast along for decades. The thought of me not being able to help shape who he is, be there to comfort him in times of dire lows, celebrate his accomplishment. It’s really hard.”

Going past your due date

I had bad menstrual-like cramps the night of my due date (April 4th), but they went away in the morning. I woke up sad and emotionally drained, thinking I was going to meet the baby that day. Then, I started getting a number of texts from friends and family asking if the baby had arrived. (Most babies don’t come on their due date FYI!) “Baby here yet?” “I need updates!” “You must be getting anxious!” The messages were well-meaning, but caused a great deal of pressure and mental stress. You have no idea or control when the baby decides to make an entrance into the world. I was also so physically uncomfortable at this point and wanted to meet baby ASAP. Also: waiting around for pain is a strange thing.

Again, a few days after my due date, I started having what I thought were contractions (well, they were contractions, called Braxton-Hicks, aka false labour). Tristan cleaned the whole house and packed a bag in case we had to head off. At night, I took some gravol and went to sleep, and woke up to nothing again. I was very upset that next day and felt emotionally drained, frustrated, and defeated. I texted my midwife asking if I could come in for a membrane sweep and to also assess if I was dilated at all: 1cm dilated. I had horrible cramping several hours later, and again at night, which I hoped was a good sign things were progressing. Things died down in the morning again and I had a cry into my bowl of cereal, then a bigger cry in the bedroom. This cycle kept repeating itself until the day before her birth.

Revising the birth plan

My original birth plan was to go into spontaneous labour and to have a vaginal birth without an epidural. Now past my due date, I had to talk to our midwife about either getting induced or getting a c-section (they don’t let you go past 42 weeks). 

I decided to book in for an elective c-section at 41+3 (April 14). I had a bad feeling about being induced. I felt my body would find the interventions invasive and that it would not tolerate it well. My midwife was very supportive and told me to go with my gut. I decided to have one more membrane sweep at 41+1 hoping spontaneous labour would occur. The next afternoon, I began having contractions. Tristan timed them on an app while we ate pizza and watched YouTube. They ramped up fast in intensity and frequency, going from 15 minutes apart to averaging around 8 minutes apart (my midwife uses a 3-1-1 rule for active labour). We decided to drive to Tristan’s parent’s house which was only a ten minute drive from the hospital and for me to labour there. The contractions definitely got more painful once we got to their house. Tristan applied counter pressure every 7 minutes which soon became exhausting. I took a bath which helped with the pain. After 8 hours of this, I needed some pain relief and we went to the hospital for a shot of morphine + gravol so I could sleep and to see if I had progressed with dilation. The results: still only 1 cm dilated. I knew something wasn’t quite right. We went home at 12:30 to get a few hours of sleep, planned to return back at 4:30 for another shot of morphine + gravol, and to remain there until our 6:30 check-in for the c-section. At around 8:30 our midwife arrived and I asked for one more cervical check before we went ahead with the surgery. 1cm dilated. I knew I wouldn’t be able to keep labouring through this way and said okay to the original c-section plan. At 9:26, Esther was pulled out of me screaming. I was so relieved. She was 9lbs 10.5 ounces, had a head almost the size of a one month old, in a sunny side up position (meaning I was having “back labour” which is a more painful type of labour), and her head was not in the right position for labour. Everyone in the operating room said I had made the right choice and that I would have had a monstrous time trying to birth her naturally, likely resulting in injury to myself. 

They dropped the curtain to show me her and I started bawling instantly. It’s a crazy feeling becoming a parent. It’s an overwhelming love and relief to finally meet her after a very long and difficult pregnancy. I spent three days in the hospital recovering from the surgery before being discharged. (See weird video below of a leg compression device I had to wear. Reminds me of something that Baron Harkonnen would wear from David Lynch’s Dune.) While in hospital, Tristan helped with latching Esther onto me for breastfeeding since I could barely move (this seemed to weird the nurses out for some reason, maybe dad’s don’t do this but they absolutely should!). This was helpful since my milk came in by day 3 and Esther was able to start gaining back the weight newborns lose in the first few days after birth. Our midwife said it was a positive thing that I was in labour, meaning that baby had signaled she was ready to be born.

We’ve been home for about a week and recovering from a c-section is hard! They say you shouldn’t lift anything heavier than your baby but my baby is quite large! Tristan has been tackling house duties, diapers, soothing her when she cries and I’ve been focused on breastfeeding and trying to rest to heal from surgery. It’s been a lot! I’m glad that she came past her due date. She had more time to develop and came out so healthy and strong. She’s also amazing at breastfeeding so that’s made things really easy on me. (She’s feisty and has gone for Tristan’s nipples a few times and his mouth). I feel very lucky to be a parent. She’s already brought us so much joy and I can’t imagine her not existing. It feels like the best thing that’s ever happened to me (tied with meeting Tristan).

PS - all the paid Expectant posts have now been unlocked for everyone to read

Note # 1

The third trimester has been physically and mentally the hardest. It’s just a big waiting game and it’s extremely boring. I’m not able to do much besides shuffle back and forth to my lazy boy chair. I’m almost entirely dependent again on Tristan to maintain the house (similar to the first trimester). He’s the sole dishwasher, cook, does most of the driving, cleaning, helps me put on my socks, and clips my toenails! Our new family feels like a Russian nesting doll—I fit into Tristan’s body, reliant on his physical abilities, and the baby fits into mine.

My mental state has also been entirely disinterested in anything that isn’t baby, baby, baby. I walk around either thinking baby thoughts or getting repetitive, never-ending songs like “99 bottles of beer on the wall” stuck in my head. I have zero interest in reading (unless it’s baby forums), going out to do activities (besides getting groceries), or working on my PhD. I’ve had to table my soul for the past nine months to become a gestating animal. I’ve become steeped in serious biological work. I’m not sure where my brain has gone, but it certainly hasn’t been the same since becoming pregnant. I’ve read in forums that it takes around two years postpartum to feel like yourself again, so I’ll keep that in mind as I move into early parenthood. 

Note # 2

Pregnancy makes you feel very physically vulnerable. There’s always a fear (if I am alone) that a man will punch me in the stomach or assault me. I think this is probably some ancient intuition to keep me and baby safe.

I’ve also become more afraid of Tristan falling ill or suddenly dying. What would I do then? How could I raise the baby? I certainly couldn’t do it alone. If he died suddenly, I think I’d plead to move into my sister and her husband’s basement so they could help raise the baby. Or I’d go to my dad’s house, but that would be less welcoming (my dad is rarely home). 

My aunt (also disabled) lived with my grandparents for most of her life and they helped raise my cousin. The takeaway: pregnancy makes you vulnerable.

Note # 3 (a parade of medical specialists)

The allergist

A few weeks ago I had an appointment with an allergist to see if I had a true allergy to penicillin. In pregnancy, there’s something called Group B strep and, if I tested positive for it, the antibiotic of choice is penicillin. I was very nauseous that day so I couldn’t do the oral challenge, but seemed to pass the skin test. The allergist had severe morning sickness for both of her pregnancies and reassured me that once the placenta is delivered, I’d no longer be nauseous and sick. “You’ll actually be hungry once the placenta is out,” she said. I couldn’t wait for that! For nine months, I’ve had to eat vicariously with my eyes, watching food shows that usually involved people overeating. 

I asked the allergist if she had waited to finish her medical studies before having children. “Yes,” she said. “I don’t think it would have been possible to be pregnant and do both.” She asked if I was able to do much in my program during my pregnancy. “Absolutely zero.” I felt less bad telling her this than telling others who have asked me this same question. Maybe things would have been different if I had had an easier pregnancy.

The anaesthesiologist 

I also met with the anaesthesiologist at the local hospital I’ll be delivering at. We went over a few of my health conditions in order to clear me for an epidural (if I wanted one). We then started discussing how pregnancy is undervalued in our society. She mentioned that the rights that pregnant people have been granted have been made by men. (i.e. you may theoretically get pregnant and work to support yourself, but you might not get paid parental leave, you might be laid off due to pregnancy, or your career will never be as serious or successful as your male counterparts). I’ve been thinking a lot about how I haven’t been around any pregnant people in my adult life. I’ve been unable to witness the slow transformation of the pregnant body.

I know about pregnancy only what everybody knows about it, which is what it looks like from the outside. I have walked past it many times. I have wondered what goes on behind its high walls.

From A Life's Work by Rachel Cusk

This invisibility would certainly be alienating for me if I didn’t have a good partner who has been a great witness to the gradual unfolding of my pregnancy. Of course, I’ve also tried to ply information from my sister-in-law and mother-in-law, but their pregnancies were so long ago that one forgets the day-to-day details. (Oh, and thank goodness for pregnancy forums or blog.)

The naturopath

Because I’ve been so sick with nausea and throwing up, I haven’t been able to keep up with oral iron supplementation and the baby takes literally all your iron so taking these supplements is important. By the start of the third trimester, my iron had tanked and I would get out of breath driving. Shoulder checking? Exhausting. Holding my arms up to use the steering wheel? Exhausting. I needed medical help! Unfortunately, to qualify for iron infusion in the public health system, I needed my iron stores and my hemoglobin to tank by a few more points. So, onto the private route! Naturopaths in British Columbia were only approved last year by Health Canada to deliver private IV iron infusions, so I’m not sure what pregnant people did before that. (Let them suffer!) I wish I didn’t have to pay out-of-pocket for this expense, but I’m trying to see it as financially equal to oral supplements which are expensive, hard on the stomach, and take a long time to rebuild iron stores. I’ve done one session (it takes five low doses during pregnancy to get your iron back to normal levels apparently), but I’ll go back postpartum for a single megadose (because money). 

Note # 4

I’ve been really bad about visually documenting my pregnancy. Here’s a collage of the times I felt motivated to document the bump throughout this pregnancy.

Next up will be the birth story! Wish me luck that both baby and me come out of it healthy!

Below is an interview with our second disabled parent of the series, Laura Lulika.1 Laura is an unprofessional working-class queer disabled artist and parent currently living in Leeds, UK. Working predominantly with video, sound and performance, their practice explores themes of care, sexuality, labour, sickness, counterculture, dirt and performativity in the everyday.

Olivia Dreisinger: What was your pregnancy experience like? What was hard? What was good?

Laura Lulika: My pregnancy experience was so varied from moment to moment it's difficult to sum it up briefly. In many ways, this constantly changing state of the body, where as soon as you get used to one state, it shifts, was excellent preparation for the experience of parenting.

It was a difficult transition in the beginning, the sickness and body changes, dysphoria and questioning of the future, as well as the annoying and invasive questions from strangers. But when I settled into my pregnancy I loved it. I morphed into a whole other creature with thicker hair, rounder shapes, like a fluffy frog and I totally immersed myself in this new form. I became the Egg King.

I was pregnant during the Covid pandemic lockdowns but I felt very unaffected by it all, I had spent so many years of my life housebound that it wasn't unusual to me to be at home. I didn'twant to listen to predisabled people's thoughts on what this experience is like because I knew that it wasn't going to be constructive or help disabled people in any way. So I lived totally in the bubble of my pregnancy and I really treasure the memories of when I really enjoyed being pregnant and present in those shifts even when they were challenging. I researched and practiced and journaled and played through the metamorphosis.

The increase of hormones seemed to improve a lot of the chronic pain I experience and there were periods where I felt better pregnant than my usual baseline state.

In general my pregnancy was undramatic and joyful until the end when everything flipped on its head.

Olivia Dreisinger: What was your birth experience like?

Laura Lulika: My birth experience was horrible. I had meticulously planned a homebirth with a pool because I hate hospitals and I hold a lot of medical trauma and anxiety. The surge in hormones caused pregnancy liver disease, cholestasis, which leads to a high risk pregnancy. The main symptom was intense itchiness, I scratched myself till I bled and I couldnt sleep. I then became 'overdue' and I was pressured into going into the hospital for an induction.

I was treated really badly by the staff who did invasive things to my body and my baby without asking such as membrane sweeps and touching her head to bring on labour. I wasn't listened to when I knew something was going wrong.

I tried to hide, naked, in a wet room and do the birth my way like I'd prepared. I remember squatting and swaying and grunting in the steam with the lingering stench of my partner's pot noodle.

It all culminated in an emergency c-section. I wasn't prepared for this situation and I didn't have any strength left to advocate for myself, I'd been in labour for 60+ hours by this point. I was trying to get myself into position for the epidural but my waters wouldn't stop breaking and I was sliding all over the table. I was huge and in pain. A midwife was shouting at me to get in position and even told me that if anything happened to my baby because I was taking too long, it would be my fault. I was in shock that instead of helping me get into position, she was stood shouting at me, then the anesthetist started arguing with the shouting midwife and it felt quite scary and chaotic in the moment.

It turned out the baby's head was at the wrong angle and they were trying to push themselves out right into my hip which is why I was having intense contractions and no dilation. I had this feeling afterwards that all the non-consensual membrane sweeping maybe made them dodge their head away. The baby and I had both become exhausted and dehydrated and then my partner noticed that the baby’s heart rate started to spike and disappear on the monitor and called over a midwife who immediately pressed the big red buzzer.

I was grateful that we all made it out of there safely after being stuck there for a week.

Olivia Dreisinger: What was your postpartum experience like?

Laura Lulika: It was double-edged. The joy of having this new human and building this connection with them, figuring out the challenge of bodyfeeding together. I was exhausted but I love a challenge and it was an incredible experience.

On the other hand, my small support network crumbled around me. The pressure of the pandemic lockdowns and the stress some people felt from our baby's arrival meant that the people who I thought would be there to support me and who had supported me through my pregnancy had run out of steam and were unravelling. I felt extremely alone. I was mistreated by the people closest to me and I didn't have anyone to care for me while I cared for our baby and while I recovered from the c-section and week long labour. I felt a level of fear and isolation that I had never experienced before, inside my bones, because I wore the weight of the responsibility of caring for and feeding our baby and I needed support to be able to do that safely and I didn't have it. I had to figure out how to do it without support and with the added stress of other people's meltdowns. I pushed myself through but I'm paying an energy debt for it. Thankfully the same support network has managed to figure out their shit over time and the sicker I've become, the more their roles and responsibilities have become unavoidable but I still think it's a shame that it happened this way. There's definitely an inequality about the birth parent having little choice but to adjust to their new roles and everyone else gets to fuck around and find out.

I still consider the post-partum transition to be continual, even now 3 years later I have slowly discovered that I have experienced birth injury and complications. I did suspect at the time that the c-section was pretty bodged and the NHS is a lottery system. I've had two pelvic surgeries since giving birth, I've been housebound again for the past two years and I'm still in need of further treatment and more surgery. The birth, and the lack of postpartum care I received, has rendered me more disabled than I've ever been.

Olivia Dreisinger: How has disability and illness impacted how you approach being a parent?

Laura Lulika: Disability has taught me that I have no control over my body, that I can't predict anything or steer anything the way I want it to go. I try to observe and feel what my body needs intuitively, which is challenging when your focus is on the care of your new little family member and you have limited energy to be present in your body. I think my approach to parenting is similar in a way though, I see myself as being there to observe, support and respond, rather than try to make them do what I want them to do. They're teaching me just as much as I'm teaching them.

Children are the largest marginalised group in the world and are completely reliant on adults to access what they need to survive and thrive and we perpetually let them down. An obvious example of this is of course the multiple genocides and atrocities we commit on children the world over. We need to start actively connecting with and listening to everyone in our local communities, especially the most marginalised, and act on what we learn.

I love sitting on my stoop and listening to all the neighbourhood kids who come and chat to me about how they experience the world and what their dreams are and I often ask myself, how can I support their dreams? How can I advocate for these kids and the world they want to see? I'm so grateful for them and their openness, I learn so much from them. I have so little social interaction so I appreciate so much that they enjoy talking to me and hanging out in my garden. Disability has taught me the importance of being active in community and the need for community to be inclusive of everyone.

Olivia Dreisinger: What advice would you give other disabled people thinking about having a family?

Laura Lulika: All disabled people deserve to have family in some form and we have to be creative to build that in ways that are accessible for us and I hope that pre-disabled people can start to be more creative about how they can be family to disabled people too.

Disabled is such a broad term and everyone's situation is so different. I have so many friends who are disabled and chronically ill who are not able to have access to the children in their lives because of the risk to their health, especially since the pandemic, or they mourn the ableism that doesn't allow them to have the experience of parenting a child.

I was always told by doctors that I wouldn't be able to safely have kids biologically and now in hindsight I can see that no matter how determined I was to do what I wanted, they were in a way right. With the healthcare available to me, I didn't safely have a child. I ended up more disabled than I was before and my kid regularly expresses their sadness and disappointment that I miss large parts of their life. They're also really understanding, caring and nurturing and have an amazing level of knowledge about access, how everyone is different and has different needs and how that should always be received with care. My kid sends voice messages and photos to a few of my friends, many of them housebound, who aren't able to access kids in real life and they understand that a lot of my friends are disabled and housebound too.

I don’t know if any of this is useful advice, I hope it doesn’t sound negative. It's all really fucking hard and beautiful at the same time.

I guess a few short practical tips are, learn how to be really clear about your expectations and needs to your co-parents and support network, don't fold baby and kid clothes, get a grabber, horizontal parent as much as you can and need to, I have spent hours playing and chatting and connecting with my kid while I'm unable to move on the bed and I know those moments have been really important for both of us and our relationship, don’t feel pressure to be organising a ton of activities all the time or feel bad if you spend a lot of days not doing much, kids need to learn about rest and listening to their body’s needs too.

Olivia Dreisinger: Anything else you’d like to say?

Laura Lulika: Thank you for inviting me to share my thoughts! I hope everyone can start listening to and prioritizing the wishes of kids and young people locally and the world over and acting to advocate and support those wishes. Stop the genocides and free Palestine.

Friends and family have been asking me if I’ll be finishing my PhD. At first, I was pretty adamant about dropping out. My priorities have changed with this pregnancy. I’ve shifted entirely from brain work to biological work, by which I mean the work of growing a baby. It’s been a full time job and the demands are only going to ramp up once the baby arrives. Academia also seems in opposition to parenthood. As a graduate student, I won’t be getting paid parental leave (already very stressed about that) and my fellowship funding runs out this fall. I’m not sure how I’d cover tuition, finish my dissertation, and parent if I return to the degree. Also, there’s the fact that I can’t work and look after a child due to my limited energy and health. (Side note: Yes, there are good childcare options provided through the university, but I’ll be finishing my degree remotely so that’s off the table for me.) Translation: I really don’t think I can have both. I would like to finish, since I’ve put so much work into the degree already, but for now I think I’ll file for a leave of health and see where I’m at once that leave is up. 

That being said, I’d much rather have a child than this degree. Having a family is more important (for me) than my professional accomplishments.1 My dad, an academic with four children, joked about childless academics clutching their manuscripts in the grave when I brought this topic up with him. My dad finished his PhD before having kids. “I finished my PhD before I even started dating!” he tells me over the phone. That’s how demanding academia is! My dad was 30 when he met my mom and got married. My brother was born the following year.

I’ve noticed a lot of moms posting online about resenting their male partners because they aren’t burdened with the task of pregnancy. One of the responses I thought was more fair in this assessment—that they don’t resent their male partner, but that they resent North American culture that does not value or support pregnancy. Parents are at risk of being fired once they take their parental leave. Childcare is really expensive or incredibly difficult to get into. Both parents need to work to survive the high cost of living. (I live in Canada for context.) Less and less people are having children, or only one child. Extended family is disappearing (very few or sometimes no cousins). There’s the rise of the DINKS (dual income no kids) where people are choosing to not have families. We will likely only have this one child although it would be nice to have a larger family (I have three siblings who I adore). On the flipside, I never want to be pregnant again.

~ Some further rambly pregnancy thoughts ~

Pregnancy has been the wildest physical experience, some good, some bad. Things I’ve experienced during this pregnancy:

• Severe morning sickness (throwing up 7 times a day at the worst of it)

• Covid (absolutely horrible, was so sick)

• Kidney stones (from severe morning sickness dehydration, 10/10 pain)

• Extremely low iron (common in pregnancy, but the healthcare system doesn’t seem to want to help you with this unless it’s absolutely dire due to financial reasons)

Things I look forward to postpartum:

• Sleeping on my back

• No more morning sickness (occasional vomiting has returned again in the third trimester . . . yay!). Being able to enjoy driving/car rides and eating whatever food I want without being in fear of how my stomach will react will be so nice

• Not having to force feed myself litres of water (well, I think I need to do this for breastfeeding but at least it will be easier without constant nausea)

I’m now spending my days reading a lot of birth stories and waiting for this baby to arrive! I think I’ll try to take some nice pregnancy photos of myself this week too ;D. (I really hate taking my picture.) I’ll post those along with a finished look at baby Esther’s room when I get around to it!

Bonus cute text from my dad:

I’m very unmotivated to do anything these days. Strange for me. I think all of my inspiration must be getting fed into the baby. A quick Google search reveals that the hormone progesterone is to blame for this lack of motivation. I’ve been chemically altered in yet another way, to take things easy and to deliver my creative resources to the baby. I am a gestating blob. I eat, drink water, attempt to exercise, and attempt to sleep. I’ve put off this blog post so many times due to creative disinterest as well.

Pregnancy sleep is also incredibly challenging. You can no longer sleep on your back, but your hips are so sore that you have to constantly shift from one side to the other. And this turning from side to side is near impossible with a big belly and ab muscles you can no longer really access. I have to hoist myself onto my elbows, then make a three point turn to flop over to my other side. Repeat a hundred times in a night.

Since I don’t have a mom, I’ve had to resort to the weird world of YouTube momfluencers to pick up baby tips (what to buy, sleep schedules, diapering, postpartum care, breastfeeding advice, and so on). I look forward to getting out of this parenting genre. It’s weird. Most of the more successful channels are affluent, able-bodied women with videos like “24 hours with a newborn,” “10 pregnancy essentials,” or “What I eat in a day while breastfeeding.” Parenting literature is also very strange. My dad hasn’t been able to offer much guidance. He seems to believe that women have an innate knowledge of how to care for a baby. (I’m sorry, just no.) This knowledge has instead been laboriously handed down by other women (pun intended?). Here’s one weird thing I learned: you have to wipe down the baby’s gums at least twice a day! Before their teeth even come in! I found some free online prenatal classes (if you’re in British Columbia, you can sign up through the Pregnancy Hub). There is so much to learn (and so much as stake!) when you bring a life into the world. Other things I’ve been trying to learn or read up on: sign language, elimination communication, and baby sleep schedules. The next big thing is to make a birth plan. I think I’m leaning towards an unmedicated birth (i.e. no epidural). My aunts and mom all had unmedicated births. I’m looking forward to meeting the baby. I hope she comes out healthy and with no complications. 

Other things to quickly note: With the baby coming soon, my health anxieties, generally at bay throughout this pregnancy, are starting to reappear. I’m worried about how my chronic fatigue syndrome will impact my ability to look after a baby. From before we even started on this pregnancy journey, I've discussed extensively with Tristan how to manage my sleep to be mentally and physically well. My specialist said to anticipate a major crash in my health postpartum. I hope this won’t be the case. I know my mother had to be repeatedly hospitalized throughout her postpartum periods. I’m trying not to focus on it so much for now. I want to write more about it at some point, but it’s too mentally triggering for me at the moment.

Motherhood memoirs I’d recommend :)

• A Life's Work, Rachel Cusk

• Splinters, Leslie Jamieson (forthcoming, you can read an excerpt here)                  

• Motherhood, Sheila Heti (on deciding not to be a parent)

• Pain Woman Takes Your Keys, and Other Essays from a Nervous System, Sonya Huber (some mentions of chronic pain and parenting)

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December 16, 2023

I woke up around 2:30am, then managed to fall asleep again at 5am. I woke up an hour later and something didn’t feel right. I was having mild cramping in my lower back and things just felt off. The cramping reminded me of my miscarriage so I got a bit worried that maybe I was going into early labour or that something was wrong with the placenta and found Tristan in the other room. I couldn’t really explain the feeling to him, I kept repeating that things didn’t feel quite right, and that maybe it’d be good to go to the hospital. We took an Uber to St. Paul’s (our car battery had died sigh) and headed to emergency who then sent us upstairs to the maternity ward since I was past 20 weeks pregnant. I wasn’t feeling too bad at this point, just felt a bit ill and still had the mild back cramps. A maternity nurse checked me in and put me in a bed so they could do a trace of the baby’s heart and also monitor if I was having contractions. I’ll just include a generic image below of what these fetal monitors look like, but they’re basically hard round discs tightly strapped across your belly.

The nurse said they needed to do the trace for at least 20 minutes to get a good reading of the baby. Then, I took a turn really fast. Less than 20 minutes later, I started screaming, sweating profusely, and vomiting. The pain in my lower back grew and I started feeling an immense pressure in my lower left abdomen. The fetal monitors increased my pain and I started begging for them to remove them, swatting away the nurse’s hands whenever they’d try to reposition me or the monitor, but the nurses said I had to endure it for a bit longer to figure out what was going on and if the baby was in distress. I kind of went totally incoherent at this point, screaming, moaning, begging for someone to help me etc since the pain was so extreme. A nurse got an IV line into me somehow and also took off some of my layers to cool me down. In my pain delirium, I told them to just cut my clothes off because them touching me was unbearable. They didn’t do this, of course, but that’s how useless the pain rendered me. I also needed to pee really badly and begged if I could have a bedpan or to just wet the bed because I couldn’t make it to the bathroom. Basically, I screamed and puked for about three hours while they ran tests and Tristan was understandably very freaked out that me and the baby were in danger. Then, thank goodness, they came back saying I wasn’t in labour and the baby was fine and gave me my first shot of pain relief (fentanyl). That provided about 10 minutes of pain relief before I started screaming and puking again. I got a few more shots of fentanyl, then they switched me over to morphine + gravol delivered intramuscularly which had a longer pain relief window (about 4 hours). The doctor suspected kidney stones and I was ordered an ultrasound. Long story short, they moved me into a private room (so nice!) so me and Tristan could rest while they monitored my pain. After the ultrasound, I had one more shot of morphine and waited for the doctor who came back saying they couldn’t find any evidence of kidney stones and was therefore stumped. They wanted to hold me overnight and have a general surgery consult if my pain came surging back. The pain did not come back, we slept, and in the morning the doctor returned to his original theory of kidney stones and that I had potentially passed them before I went in for my ultrasound. This seems most likely to me due to my severe morning sickness and being chronically dehydrated throughout pregnancy. Anyway, it was a scary experience, but the maternity nursing staff and doctor were so unbelievably kind to us and took amazing care of me. I’m very thankful I trusted that something wasn’t right and headed to the hospital when I did, otherwise Tristan probably would’ve had to call an ambulance. I’m thankful the baby is fine and now I’m trying to drink water more seriously (over 2 L a day for pregnancy). 

Other not as exciting updates (more of these please for the last few months of pregnancy). I’m going to just make bullet points here because I’m still drained from the kidney stone experience and feeling a bit overwhelmed. 

• I’ve been experiencing waves of pregnancy insomnia. I will sleep for 4 hours, be awake for 4 hours, then fall asleep for a few more hours. I’m not sure if my body is torturing me with this in order to prepare for the newborn sleepless phase. I’m already someone prone to insomnia, so maybe I’m just more sensitive to the surge of pregnancy hormones. My hips also ache horrendously at night and I’m far enough along in my pregnancy that you’re no longer allowed to sleep on your back, so this has been bothersome.

• The baby kicks a lot, which I love. The baby likes to hang out at the bottom of my uterus.

• I haven’t been emotional at all during pregnancy (maybe confirms what everyone says about me, that I don’t have emotions). One less thing to worry about!

• I find artificial sweeteners absolutely disgusting, along with other synthetic food additives. I was already pretty cautious of additives before, but now my body absolutely rejects them. 

• The mom economy is pretty amazing. We’ve managed to source 80% of our baby times from free parent groups. I’d recommend joining a facebook parent group if you’re thinking of having kids.

• I did the glucose test to rule out gestational diabetes (passed, thankfully). You have to drink a 50g sugar liquid, wait an hour, then have your blood drawn. The drink is DISGUSTING. Tristan came with me and we sat and watched the different types of people coming in for blood work while I tried not to throw up (vomiting invalidates the test and I would have had to come back).

• The day after being discharged for kidney stones I had to go back to the same hospital for a cardiac obstetrics appointment (unrelated to the kidney stones), but my heart is totally fine and handling the stress of pregnancy well.

Things I wish I knew before getting pregnant:

• That I should be doing pelvic floor exercises and just generally trying to get my health better before pregnancy. Then again, I didn’t know I was going to wind up with severe morning sickness and be bedridden for months into the pregnancy. That really didn’t help me.

Things I worry about:

• My chronic illness symptoms rushing back after birth.

• Not being strong enough to labour through a natural delivery. I’ve been considering an elective c-section, but we will see how the next few months are for me and I’ll be seeing my midwife team again soon.

  ---

And I’ll end this post with some dark pregnancy humour that made me feel better and gave me a good laugh!

The cabin room contains a single large window, and the bunk beds that are to be converted into a sofa during the day. We have asked to keep them as beds and for the train staff to leave us alone. I preferred to be in bed all day and I didn’t want my sister to be bothered by the comings and goings of strangers. There is a private toilet and a shower, which my sister can use to clean the incision on her chest. It is our first night on the train back home to Vancouver. The trip will take several days. 

My sister has just had her third heart surgery. She had come from the hospital with my father, who needed to fly off immediately for business. I was to be her chaperone. I had arrived quite early in the morning to meet them at the Toronto Union Station to take charge of my sister. She could not travel by air—the pressure would be dangerous to her lungs, one of which had collapsed during the surgery.

My sister has two heart conditions: Wolff-Parkinson-White syndrome and supraventricular tachycardia. Her heart rate accelerates, called an “episode,” and won’t slow down. Extra electrical pathways in her heart are to blame. (Anna has several.) My father would tell me that Anna had holes in her heart whenever he tried to explain her condition, but they aren’t actually holes. She takes Sotalol twice a day, a beta-blocker prescribed for life-threatening cases.

During surgery, a catheter is used to ablate, or erode the pathways. Children's hearts are smaller, and it’s therefore more difficult to locate and ablate these holes successfully. Anna had waited until she was a bit older, seventeen now, her heart bigger, beating more solidly. Her surgeon threaded a catheter through a vein in her groin, up to her heart. Then: burn, burn, burn. She had to be awake for it, too. They pumped her with adrenaline to make her heart race in order to map her heart and find the holes. It was a difficult surgery. One of the holes was 6 millimeters away from her AV node, a good electrical pathway. It was terribly hard to ablate the bad pathway and not the one you needed to live without a pacemaker. But, the surgery had failed. Worse, a new physician had inserted the chest tube to reinflate her collapsed lung, which had been incredibly painful for Anna. She probably tried to smile through it all. Anna’s like that.

My sister is tall and has deep brown hair like our father. She likes to please people, and is generally more social and cheery than me. In fact, I wasn’t social or cheery at all. I wasn’t a particularly nice older sister either. I usually got Anna to fetch me things from downstairs, while forcing my other sister to watch me play video games. When Anna was about four, I tied her to a chair, made her face up like a clown with some lipstick we had bought for our dance competitions, and fed her dinner.

I stretch and kick off my blankets into a ball at the foot of the bed, before climbing down the ladder. I wake Anna up. Then, I leave to get a table for us for lunch.

The dining car is clean: white tablecloths, white coffee cups. We are the youngest ones in the dining car. Rows of older people, retired, with money for such a trip and who wanted to sit and see Canada that way, sit around us. (It’s supposed to be a luxury travel experience.) Windows run the length of the car. Each table sits four, with tables on either side of a long, central aisle. Most people are in pairs, so this system works quite well. We are to be seated with a new pair every meal, although I would prefer to eat alone. I do not like all this chatting. I like to focus on my meal.

Our table is one at the back. Our server shows us the scar on his head, like the outline of a scythe had been burned above his ear. “Brain cancer,” he says.

An older couple is seated across from us.

“What a lovely day it is out there,” the woman says.

“Yes,” I say, glancing outside. I liked comments about the weather. It signaled neutral, polite conversation territory: they wouldn’t be inquiring about anything personal from me or my sister.

Our server pours us coffee and hands us the menus: grilled salmon pasta with a lemon cream sauce and capers; tuna melt with a little salad and minestrone soup; falafel and pita. I order the tuna. The table has an assortment of individual food items: soda crackers, single-size containers of jam and smooth peanut butter (the kind with icing sugar), sugar cubes, creamers. I want to open them all. At home, I was used to meals of boiled chemically potatoes with melted margarine, freezer burnt pork, and microwaved broccoli that sat in a few centimeters of luke-warm water at the bottom of the casserole dish. The food arrives and I tear open a packet of soda crackers and crush it into my soup.

After a few bites, the woman speaks again.

“It’s good, isn’t it?” she says.

“It’s much better than what we get at home,” I say, reaching for another packet.

She laughs, glancing slightly at her husband.

“We’ve never had train food,” I continued. 

“Either of you?” she asks, her husband examining the ingredients list on a packet of marmalade.

“Sorry,” I say. “That’s Anna, I’m Lorne. This is our first time on the train.”

“A graduation gift,” Anna says quickly. “From our dad.”

“How nice,” the woman says. “Your parents weren’t able to come along?”

I feel Anna stiffen slightly beside me.

“We wanted sister-bonding time,” Anna smiles.

I take a sip of coffee. “Yes,” I say. “We wanted to bond.”

Sometimes my sister would forget to take her heart medication, which could result in an episode. Her heart would beat over a hundred times a minute, which could result in her heart stopping altogether, which could result in death. Other people with mild cases could drink a glass of water or lay on the ground and put their legs above their head to stop an episode. This did not work for my sister. Anna had a bad case. Her heart would continue to thrash against her ribcage and she’d have to be taken to the hospital. One time an ambulance had to rescue her on a family trip. We were staying in a remote mountain location and the ambulance drove hours in a snowstorm and hours back to the hospital. With each switchback the ambulance took, I thought she would die. I sat up late listening to music and painting, my brain taking each switchback. The snow raged outside. Anna was only about nine.

For the last seven years, my grandma has called every morning at 8 to remind Anna to take her pill. If my dad was away on a trip, she would also call around dinner time. These scheduled calls allowed Anna to live a fairly normal life, episode free. Before my grandma’s calls, my sister had tried setting alarms on her wristwatch, but she never remembered to wear it. I’d often have to dig through the couch cushions or run all over the house to locate the beeping thing and turn off the alarm. And my sister never left her watch in the same location: in the drawers stuck with the old phone books or spare pencil crayons, in the bathroom beside the hair straightener, still on, or sometimes in the kitchen behind the fruit bowl.

There isn’t a lot to do on the train. After lunch, I sit in the car with the panorama dome, the glass windows continuing up to the ceiling, meeting in a curve towards the sky. I order some snacks, and watch the other guests reading or nodding off. Looking through the dome for too long is a little nauseating. The glass framed the atmosphere in motion, like a painting with nothing to focus the eye on. Anna has returned to our cabin to rest and will come find me later.

Classes start up again at the university in a week. I read as the Canadian landscape goes by. What I really wanted was to be in movement, like the train. One could not easily exercise their legs while onboard. It was impossible to walk up and down the cars for leisure. The hallway was narrow, only one person could walk through at a time, causing many guests to have to retreat back into their rooms, then peer back out to see if the way was clear. Peer, retreat, peer, walk, then quickly retreat again if someone rounded the corner unexpectedly. The staff seemed never to retreat, only to move forward to where they wanted to go. I wanted this forwardness.

This summer I had returned from working on a farm in Sweden. My days were full of drinking, smoking, and working the land. I wanted to get strong. Our mother had died in the spring from suicide and I was still in that phase where I was not sure what kind of effect it had on me. The farm gave me some routine. I’d wake early and have a breakfast of cheese, butter, Knäckebröd, and fresh coffee. Then we had the morning meeting to assign tasks. I didn’t have any skills and was usually sent out into the fields to weed with the other unskilled volunteers. I weeded every day. I hated it. I couldn’t tell the difference between a weed and a vegetable seedling and the farmer had to keep coming to my row to point out the cucumbers I had wrongly removed and I would try again, but they still all looked the same to me. There wasn’t a radio to listen to so I would talk to the other volunteers, but I also found this boring. There were a lot of Germans at the farm who seemed to work on their hours off and I got the sense that they found me lazy for not doing the same. Then, after more weeding, we would take a fika, a coffee break, and I sometimes got to eat a bit of cake from the cafe if it hadn’t been sold and was about to spoil. 

My back ached after a day in the fields, squatting over the rows of vegetables in the hot sun, and it was hard to stand back up. I found a children’s toy to sit on in the fields, a plastic turtle, but soon abandoned it as it made no difference to the pain. I’d return to the sleeping cabins that I slept in with some of the other girls and would try to lay very flat to stretch out the muscles in my back in an effort to calm the pain down. There was no heat and the mattress was a thin piece of foam and I often went to sleep in a fleece sweater I had bought for the trip. We only had to work six hours a day and had two days off. On my days off, I took the bus into Stockholm or sometimes hitch-hiked and wandered around the city and drank and smoked. I began to have a pain in my lungs and I suspected it was from all the smoking. I stopped smoking, but the pain stayed. One afternoon, while returning to the farm from the city, I felt a cramp in my stomach that forced me to stop and lay down on the side of the road for half an hour until it passed. I’d only been home for a few weeks when I got back on another plane to go get Anna.

The train speeds up at night, which terrifies me. It was just the train hurtling through the wilderness, lit by the moon, my window opening up into the dark. I had never traveled overnight on a train before. It was also quite loud. I could hear the freight trains when I slept at home, but it was always in the distance, not the hard sound of the wheels against the tracks. Maybe there will be a derailment, I think. Could the train come off the tracks if a moose or a large branch were hit? I grow afraid that I will be tossed from my bunk. There is netting near my legs to prevent this, I know. I gently kick out at the net and feel my feet make contact. I try to switch my brain off of this thought, and instead begin to wonder why my mother didn’t try to go out this way, jumping in front of a train. I fall asleep thinking about her.

“Lorne.”

I turn around. Anna’s shirt was lifted.

“Does this look okay?” My eyes come to rest on an inch-long incision on the left side of her ribcage, directly below her bra. Bruising softly spread around the cut. At the hospital, a tube had been inserted into the lung, then stitched into place, to allow her lung to drain. 

“I think so, but please don’t make me look closely at it.” I turn away. The fact that 

the incision had gone straight into her lung, into her body… Something about its deepness unsettled me. I felt that it was something that should remain private, like the small incisions below her groin. Anna turns back to the mirror and continues to check her wound. My chest starts to ache. 

“Done,” Anna says. She finishes in the bathroom, turns off the light, and we leave for breakfast.

Every morning, the doctors wanted to check if Anna’s lung had reinflated. Instead of waking her, a nurse would wheel her to the x-ray room, still fast asleep. She would come to wheeling through a hallway, not knowing where she was or what was happening. Before each x-ray, Anna was asked if she was pregnant. “What do you think I’m doing in this hospital?” Anna said to the technician. “I’ve just had heart surgery. I have a collapsed lung!”

Shortly after an early breakfast, we step off the train and into Winnipeg. There was an exhibit I had researched beforehand and we ask one of the train attendants how to get to the art gallery. We walk north through the windy, cold streets and enter into the Winnipeg walkway, a system of under and above ground covered walkways that snake through the city. We exit right at the gallery, but it is closed. I walk to the entrance to check the sign: it wouldn’t open for another hour. We decide to wait. 

I take some photos outside of the installation art: rows of lightbulbs that looked like Chinese cupping glasses were mounted to a mirrored ceiling. I look up, staring at myself in the art. I have on a little beret, a thin sweater, and some green stockings. The camera blocks my face. I take a few photos of Anna. She lies down on a concrete bench, her long brown hair flowing behind her, and I get down on the ground to take photos of the both of us in the installation. My hands start to turn blue and I notice Anna shivering, her body humming. We hadn’t packed for the chill of the middle provinces where the season turned earlier than ours. Anna only has on a flimsy long-sleeve shirt, a small jacket, and some sneakers. The morning prairie winds pick up, hitting our chests. I worry about Anna and her collapsed lung with the cold air and her heart that still has a hole in it. I make the decision that we should walk back to the train. 

Back in our bunks, under the covers, we warm ourselves up. Anna texts her friends and listens to audiobooks. An hour later, the train starts off again. I flick through the photos in bed. Anna looks small and tired. I turn the camera off and close my eyes, pulling the blankets over my head. I stay like that for a while.

In the afternoon, Anna meets me in the activity car. I shuffle two decks of cards and make two piles of twenty for us to play Spite and Malice, stacking the rest in the middle. It’s a sort of two player solitaire, but absolutely ruthless. We each flip over the top card on our piles to see who goes first. Anna reveals a three. I get a queen. Anna draws five cards from the middle deck.

“Tell me again,” I say, “about that medication.”

“Adenosine restarts your heart,” Anna says, playing an ace, two, three, before discarding. “When it stops your heart, it triggers this smell. There’s a really strong smell, but no one else can smell it,” Anna explains. “Doctors and nurses always asked me what it smelt like.” 

I draw and then place a jack in my discard pile.

“But there’s no way to describe it,” Anna says. “I was shocked that no one else in the room could smell it.”

The smell came from inside of her, I thought to myself.

“All of your bodily sensations are turned on at once. It feels like someone is sitting on your chest and you can’t breathe. You can’t move any of your limbs. You feel like puking, and then your heart restarts.”

“What you’re describing is a heart attack,” I say.

Anna is quiet. “Yes, you’re probably right. Like a heart attack.”

Anna had built up a tolerance to Adenosine. It would stop her heart, just not the episode. The second time I thought Anna was going to die, I had come home and found her near the stairs with her legs above her head, looking scared. She had forgotten to take her pill and I immediately drove her to the local hospital. Once there, I told the triage nurse my sister could die any second, listing her diagnoses, and quickly doctors and nurses descended upon her, hooking her up to monitors and tubes. Someone prepared the defibrillator in case she coded. I watched as the doctors tried to restart her heart with Adenosine. Anna kept telling them to give her Procainamide, not Adenosine, but they weren’t listening to her. They gave her Adenosine three times. I started to cry. Anna was attached to all these wires and machines and my sister was trying to be brave even though she could die at any moment. Finally, Anna was given Procainamide and she began to stabilize. I stood slightly beyond the curtain, totally drained.

My chest starts to ache again. It bothered me that illness could induce such strange, new experiences in the body that no else could ever understand or feel. It reminded me of our mother. Anna flips over the final card on her pile, an ace. I start to gather up the cards, the game over, when a train announcement comes over the speakers: we are behind schedule due to an earlier passenger delay and will be pulling over into Saskatchewan for a brief twenty minute stop, to allow guests to stretch their legs. The train slows down and Anna and I move towards the train doors, stepping out into an empty field. Several hundred meters away are some trees. Then, nothing. We stand, then sit down on the ground. It is already so much warmer than Winnipeg, just one province over. I look over at my sister, enjoying the late summer heat. I touch her shoulder.

“Maybe the next surgery will work,” I say.

“Yes, maybe,” says Anna.

The last day we eat our meals late so we can be seated alone. There is only one other person in the dining car. It is quiet. The other guests pack and the porters prepare for the guests to unload. I have the pancake breakfast. Anna has the continental: strawberry yogurt, cold cereal, and a piece of whole wheat toast. The train pulls into Vancouver. We take a taxi to our house with no one home.