As said to Nicole Audrey Spector
November is National Epilepsy Awareness Month.
It happened while I was sleeping. I woke up to my then-husband Duane sobbing in bed over me. I regained consciousness.
“What are you doing, are you crying?” I asked.
Duane wasn’t one to burst into tears.
“You had a fit!” he cried.
I freaked out – not so much for me, but for my baby. I was 20 weeks pregnant with my second child.
I immediately called my gynecologist who gave me an appointment in a few days.
I went back to sleep and had another (probably Grand Mal) seizure later that night. Then I started having little episodes during the day where I was completely blank on where I was and what I was doing.
My gynecologist didn’t have any answers to my seizures or whatever was going on in my brain — in fact, she didn’t seem particularly curious as to what was causing them.
She was mainly worried about how the baby was doing. She checked for a strong heartbeat, told me I had epilepsy and prescribed me anti-seizure medication and that was it.
The anti-seizure drug worked for a while. But soon the seizures returned. I was a stay-at-home mom and I was always dedicated to taking care of my son. But now I needed my own caregiver because I had multiple seizures every day. Duane wasn’t able—or even really willing—to do the job, so I went to my mom, who works in the medical field and has always been very supportive of me.
My mother took me to a gynecologist who specialized in high-risk pregnancies.
While we were there, she gave the doctor some completely shocking information: I had had a febrile seizure as a child.
That was new to me! Did that mean I’ve always had epilepsy? Eventually I would learn that it probably was.
But that day there were more pressing concerns. The OB-GYN discovered that I was headed for early labour. As she explained, every time I had a fit, my body experienced contractions and I got closer and closer to having my baby.
I was already 3 centimeters dilated.
My doctor ordered strict bed rest – so strict that I could not keep it at home. She had me admitted to the hospital, where I stayed for three and a half excruciating months, unable to do anything by myself or for myself.
The worst part was that one of the many doctors who floated around my room one day told me that it wasn’t the baby they were trying to save. It was me.
“The baby won’t make it,” the doctor said in a clinical, distant tone. “She will be stillborn.”
I was devastated.
It was hard for me to get through those bedridden months. The gloom and sadness was as thick as smog. To achieve it, I relied on love for my son, my relationship with God, and making art, which is my profession. I am legally blind and drawing and painting has long been a way for me to capture the visual beauty of the world around me – even if I can’t always see it.
Stephanie Gowdy with one of her paintings.
One of the only things I could do in the hospital was draw. So I sketched portraits of my friends with pictures on social media.
When I was 38 weeks pregnant, I went into labor and lo and behold, my daughter came out alive and perfectly healthy. It was a miracle.
But I was far from over the mountain.
The seizures came back after several months and I couldn’t control them with any medication, no matter what the dose.
I learned that I’ve had epilepsy auras, a type of seizures, all my life. And I still have them.
For me, an epileptic aura is like a very bad, ominous feeling that settles in the pit of my stomach and then spreads throughout my being. It can happen anywhere, anytime, but the violent episodes – the grand mal seizures – still occur at night, typically when I’m already asleep.
Stephanie Gowdy and her children, March 2022 (Photo/Sonia Rodney)
It has been six years since my daughter was born and my epilepsy remains a force to be reckoned with. I also get terrible migraine attacks that last for weeks at a time. Some days I can’t get out of bed. My memory is blurry – so much so that my son has to ask his teachers to write down messages for me.
“Otherwise Mom will forget,” he says.
Numerous doctors have told me that they just don’t know what’s wrong with me – that there’s nothing they can do. That I’m more or less on my own.
There’s no way to sugarcoat it: my journey with epilepsy has been one of hell. And yet it is never without hope – not even for a second.
Not only do I passionately believe that I will find answers if I keep demanding them, but that I’m going through all of this for a reason bigger than me.
There was already a bright spot because of my epilepsy: Duane and I got divorced. That sounds sad but believe me it’s a blessing. If I hadn’t gotten sick, we might never have realized we were incompatible.
And I never stop looking for answers. I work tirelessly for myself, as do my mother and friends. I know that if I can’t find a cure for my epilepsy, I will find a treatment that will keep it under control.
Despite the overwhelming pain and weariness, art flows from my hands, filling page after page. I may not be able to see fully, but my artistic vision is focused. I may be shaking and aching from the fits, but my hand is steady.
And I’m confident that one day I’ll be fine.
Our Real Women, Real Stories are the authentic experiences of real women. The views, opinions and experiences shared in these stories are not endorsed by HealthyWomen and do not necessarily reflect official HealthyWomen policy or position.
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