My epileptic seizures can hurt my pregnancy. I wrote a lullaby to soothe my baby and my fears

This first-person column is the experience of CBC journalist Julianne Hazlewood, who lives with epilepsy. For more information on CBC First Person Stories, please see our FAQ.

I have thought of myself as a cat with nine lives. Beginning with my first seizure when I was 14, I almost died from multiple seizures.

It happened on a hot, muggy night at the end of the school year. I fell asleep knowing that I had to get up early the next morning for choir practice.

Instead, I was woken up by an ambulance. Mother was sitting in the corner, her eyes widening in fear.

She was almost asleep when she heard a faint sound in the house. She thought something had fallen. But after her back and forth she finally walked towards the bathroom.

My mother found me holding on to the ceramic floor. She froze at first, but as soon as she noticed that I was choking with her tongue, she took action, my body was turning blue as she convulsed, she told me later. rice field.

She laid me down so I could breathe and called 911. Her mother saved my life that night.

I will soon be diagnosed with epilepsy.

joys and fears of pregnancy

Now, more than 20 years later, I am pregnant for the first time. I am her 37 and feel joy and anticipation to meet the child. But I also live in fear.

I rely on anticonvulsants to avoid seizures. Studies show that pregnant women with epilepsy may be more likely to have seizures. One reason for this is physiological changes during pregnancy. This can affect how the body responds to epilepsy drugs, making them less effective. Mandatory seizure control drug drops can put mother and baby at risk.

The possibility of having a seizure and affecting or losing the baby’s health underpins the joy I feel.– Julian Hazelwood

Ever since my first seizure and diagnosis, the fear of collapse and seizures has been in me. Pregnancy brings that fear to the fore. The possibility of having a seizure and affecting or losing the baby’s health sustains the joy I feel.

So when my neurologist described the lullaby project, it felt like a glimmer of hope — a way to turn my deepest fears into something beautiful, like a song for a baby.

music as medicine

The program will take place at Roy Thomson Hall and Massey Hall in Toronto. I approach music as a medicine. It is designed to empower participants by giving them the means to express their experiences and connect with themselves, others and their babies through music.

My neurologist, Dr. Esther Bui, worked with the Lullaby Project to help adapt the program for women with epilepsy during pregnancy.

As one such woman, I spent months working with musicians to write and record songs for my baby.

We met for the first time at artist Liz Roque’s jam space. Before I messed around with her chord progressions or wrote her lyrics, I told her her own story. As a teenager, I refused to wear a medical warning bracelet because I didn’t want anyone to find out about my seizures getting out of control in my early twenties. At first, I had one seizure a week, but then I had several seizures a day.

I told her that I felt like my body was moving like a kaleidoscope.

I described my last seizure, which occurred early in the morning six years ago, just before it aired on CBC in Fredericton. I felt sick. Like a turntable with scratches on the record. Like my heart was skipping a beat.

When I woke up in the hospital, my eyes were black and my body was swollen from falling on my desk. She felt the weight of her depression. It left me as a hollowed-out version of myself for months.

I was inconsolable as that hospitalization came after years of few seizures. It was a reminder that breakthrough seizures are always possible, no matter how long they last.

Lokre encouraged me to incorporate my experiences into the songs. She says it may not sound like a typical lullaby, but it might help explore her journey with epilepsy and share everything she’s been through with her baby. I was.

I kept the melody simple on the keyboard so that I could eventually play the song myself on the piano. We based the lyrics on my poems and Lokre helped translate those poems into musical narratives.

Through each note and line, we wanted to send a message of love to my baby.we called a song way to you.

Listen | Julianne Hazlewood sings Lullaby The Road to You

Throughout my pregnancy, I have been giving myself a hard time. “It’s been years since you last had a seizure. Why are you so afraid of having another one? Why can’t you let go?”

But as Dr. Bui reminded me, trusting one’s body feels alien to many women with seizures. The same is true for women. It was my first time talking to other people with epilepsy about their experiences.

Dr. Bui’s team at the University Health Network has begun measuring the program’s impact. They are beginning a study to examine how the Lullaby Project affects participants’ empowerment scores, anxiety, depression, and seizure counts.

Past seizures seem to leave some sort of emotional scar tissue behind. The Lullaby Project helped me work through layers of trauma.

After recording the song, I had tea with my mother. “You look so happy,” she said, feeling like she was kicking me in the stomach. I smiled. I told her I felt her peace. In the process of making her music, she was able to untangle her own memories and seizure bodies and confront her own fears. As she glanced at her growing belly, she told me that she was “somewhat lighter.”

Now I’m waiting When your baby is born, you can finally sing lullabies. I will share my journey as we begin our journey together.

---

Do you have a compelling personal story that can bring understanding or help others? We would love to hear from you. Find out more about how you can propose to us here.