FIRST PERSON | My epileptic seizures can hurt my pregnancy. I wrote a lullaby to soothe my baby and my fears | CBC Radio

This First Person column is the expertise of Julianne Hazlewood who’s a CBC journalist and lives with epilepsy. For extra details about CBC’s First Person tales, please see the FAQ.

I’ve typically considered myself as a cat with 9 lives. There’s been so many occasions I’ve virtually died from seizures, beginning with the primary one I had after I was 14.

It occurred on the finish of the varsity 12 months on a scorching, humid evening. I fell asleep pondering I wanted to stand up early the following morning for choir observe.

Instead, I wakened in an ambulance. My mother was sitting within the nook, her eyes broad with terror.

She was practically asleep when she heard a faint noise in the home. Something in all probability fell, she thought, and it might wait till morning. But after going forwards and backwards, she lastly walked in the direction of the toilet.

My mother discovered me seizing on the ceramic ground. At first she froze, however then she lurched into motion as soon as she realized I used to be choking on my tongue. My convulsing physique had turned blue, she later instructed me.

She put me on my aspect so I might breathe and known as 911. My mother saved my life that evening. 

I might quickly be recognized with epilepsy.

The pleasure and concern by being pregnant

More than twenty years later, I’m pregnant for the primary time. I’m 37 and I really feel full pleasure and anticipation to satisfy my youngster. But I additionally stay in concern. 

I depend on an anticonvulsant remedy to keep away from seizures. The likelihood of seizures can enhance for girls with epilepsy who’re pregnant, in accordance with analysis. One of the explanations for that is the physiological adjustments throughout being pregnant, which may have an effect on how the physique responds to epilepsy remedy and makes it much less efficient. A drop in important seizure-control remedy can put mother and child in danger.

The chance of getting a seizure and that affecting the infant’s well being or dropping the infant underpins the enjoyment I really feel.– Julianne Hazlewood

The concern of collapsing and seizing has lived inside me since my first seizure and prognosis. Being pregnant brings that concern to the fore. The chance of getting a seizure and that affecting the infant’s well being or dropping the infant underpins the enjoyment I really feel. It haunts me.

So when my neurologist described The Lullaby Project, it felt like a glimmer of hope — a approach to channel my deepest fears into one thing stunning like a music for my child. 

Music as drugs

The program is run by Roy Thomson Hall and Massey Hall in Toronto. It approaches music as drugs. It’s designed to empower contributors by giving them an outlet for expressing their experiences and connecting with themselves, others and their infants by music.

My neurologist Dr. Esther Bui has collaborated with the Lullaby Project and helped adapt this system for girls with epilepsy who’re pregnant.

As a kind of girls, I labored with a musician over the span of a number of months to collaborate, write and report a music for my child.

I met artist Liz Lokre for the primary time at her jam area. Before we began enjoying with chord progressions and writing lyrics, I instructed her my story — that for years, I did not settle for my epilepsy. That as a young person, I refused to put on a medical alert bracelet as a result of I did not need anyone to know. That my seizures have been uncontrolled in my early 20s. That at first it was a seizure every week, then I began having a number of seizures a day. 

I instructed her my physique felt like a kaleidoscope of movement — the uncontrolled motions of my physique whereas seizing paired with the movement of transferring throughout the nation as a journalist. 

I described my final seizure, which occurred six years in the past within the early morning proper earlier than I used to be about to go on air at CBC in Fredericton. I felt off. Like a turntable with a scratch on the report. Like my thoughts was skipping a beat. 

I wakened within the hospital with black eyes and my physique swollen from falling towards a desk. I felt the burden of melancholy. It left me as a hollowed out model of myself for months.

I used to be inconsolable as a result of that hospital keep got here after years of just about no seizures. It was a reminder that regardless of how lengthy I’ve gone with out one, a breakthrough seizure is all the time potential. 

Lokre inspired me to include my experiences into the music. She mentioned it could not sound like a typical lullaby, however it might assist me discover my journey with epilepsy and share every thing I’ve gone by with my child.

We stored the melody easy on the keyboard in order that I might ultimately play the music myself on the piano. We based mostly the lyrics on my poetry and Lokre helped me translate these verses right into a musical narrative.

Through every word and line, we needed to ship a message of affection to my child. Even although I’m not an unimaginable songstress, it was essential I sing the music after we recorded. We known as the music The Road to You.

LISTEN | Julianne Hazlewood sings the lullaby, The Road to You

Throughout my being pregnant, I’ve been laborious on myself. I’ve thought, “your last seizure was years ago. Why are you so fearful of having another one? Why can’t you let it go?”

But as Dr. Bui jogged my memory, for a lot of girls who’ve seizures, belief of their physique feels international. The perception holds true amongst different girls I had the privilege of assembly in this system. It was the primary time I had spoken to different individuals with epilepsy about their experiences.

Dr. Bui’s group on the University Health Network is starting to measure the influence of this system. They’re launching a examine that may take a look at how the Lullaby Project impacts empowerment scores, nervousness, melancholy and the variety of seizures contributors have.

I see my previous seizures as leaving an emotional scar tissue of types. The Lullaby Project helped me wade by these layers of trauma. 

After I recorded my music, my mother and I shared a cup of tea. As she felt my stomach for kicks, she mentioned, “You look so happy.” I smiled. I instructed her I felt at peace. That the method of making music allowed me to unravel my physique of reminiscences, of my seizures, and confront my fears. As I glanced at my rising stomach, I instructed her “somehow I feel lighter.”

Now I wait. Once my child enters the world, I’ll lastly get to sing my lullaby to him. I’ll share my journey, as we start ours collectively.

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