I Didn’t Find Out I Had Epilepsy Until I Was 28, But I’ve Likely Had It My Whole Life

As informed to Nicole Audrey Spector

November is National Epilepsy Consciousness Month.

It occurred whilst I was sleeping. I woke up to my then-spouse, Duane, sobbing about me in mattress. I snapped back again into consciousness.

“What are you performing, crying?” I asked.

Duane was not one to split down in tears.

“You ended up possessing a seizure!” he cried.

I bolted up in terror — not so considerably for me, but for my newborn. I was 20 weeks expecting with my next boy or girl.

Right away, I referred to as my OB-GYN, who in shape me in for an appointment in a handful of days.

I went again to sleep and had another (presumably grand mal) seizure afterwards that night time. Then I begun owning tiny episodes during the working day in which I would entirely blank on in which I was and what I was carrying out.

My OB-GYN did not have any solutions about my seizures or whichever else was heading on in my mind — in truth, she didn’t appear significantly curious about what was triggering them.

She was typically worried with how the infant was undertaking. She checked for a heartbeat, which was strong, instructed me I experienced epilepsy and prescribed anti-seizure medicine for me — and that was that.

The anti-seizure medicine labored for a though. But shortly the seizures returned. I was a keep-at-home mother and experienced often devoted myself to caring for my son. But now I essential my personal caregiver due to the fact I was acquiring numerous seizures a working day. Duane was not able — or even genuinely ready — to tackle the occupation, so I went to stay with my mother, who works in the medical subject and has always been a solid advocate for me.

My mom took me to see an OB-GYN who specialized in large-chance pregnancies.

When we have been there, she discovered absolutely shocking data to the doctor: I’d had a seizure through a fever as a child.

This was information to me! Did this signify I’d constantly had epilepsy? Eventually I would learn that it probably did.

But on that working day there had been far more urgent worries. The OB-GYN uncovered that I was heading toward early labor. As she spelled out it, everytime I experienced a seizure, my system expert contractions and I received nearer and nearer to delivering my little one.

I was currently 3 centimeters dilated.

My medical doctor requested rigid mattress relaxation — so demanding that I could not do it at dwelling. She had me admitted to the healthcare facility, where by I remained for a few and a 50 % excruciatingly long months, not able to do anything at all by or for myself.

The worst component was that just one of the lots of physicians who floated in my home a person working day told me that it was not the newborn they ended up attempting to help you save. It was me.

“The toddler won’t make it,” the medical professional reported in a medical, detached tone. “She will be stillborn.”

I was devastated.

It was rough for me to get by for the duration of people bedridden months. The gloom and disappointment was as thick as smog. To push through it, I relied on the like for my son, my romantic relationship with God, and making artwork, which is my job. I am lawfully blind and drawing and portray have prolonged been a way for me to seize the visible natural beauty of the world all-around me — even if I simply cannot always see it.

Stephanie Gowdy with one of her paintings.

A person of the only issues I was able to do in the healthcare facility was attract. So I sketched portraits of my pals utilizing images on social media.

When I was 38 months expecting, I was induced into labor — and lo and behold, my daughter arrived out alive and beautifully nutritious. It was a wonder.

But I was far from out of the woods.

The seizures came back again right after various months, and I have not been capable to continue to keep them at bay with any treatment, no make a difference how higher the dose.

I uncovered that I have been suffering from epilepsy auras, a variety of seizure, all my lifetime. And I however have them.

For me, an epilepsy aura is like a really terrible, ominous emotion that will take root in the pit of my belly and then branches out more than my entire becoming. It can take place everywhere and at any time, but the violent episodes — the grand mal seizures — however arise at night time, generally when I am presently asleep.

Stephanie Gowdy and her youngsters, March 2022 (Picture/Sonia Rodney)

It is been six decades considering that my daughter was born, and my epilepsy stays a force to be reckoned with. I also get horrendous migraine attacks that very last weeks at a time. I’m not able to get out of mattress on some days. My memory is fuzzy — so much so that my son has to ask his lecturers to write down any messages for me.

“Otherwise Mommy will overlook,” he suggests.

Numerous physicians have told me that they just really do not know what is completely wrong with me — that there’s practically nothing they can do. That, far more or less, I am on my possess.

There is no way to sugarcoat it: My journey with epilepsy has been hellish. And nevertheless it is not at any time without hope — not even for a next.

I not only passionately believe I will find answers as I continue to need them, but that I am likely by all this for a cause that is bigger than me.

There has now been one particular silver lining simply because of my epilepsy: Duane and I divorced. That seems unhappy, but belief me, it is a blessing. Had I not gotten unwell, we could possibly not have ever recognized that we had been incompatible.

And I never ever stop hunting for answers. I advocate tirelessly for myself, as do my mom and my pals. I know that if I really don’t explore a heal for my epilepsy, I will uncover a procedure that retains it less than regulate.

Irrespective of the frustrating ache and fatigue, artwork flows out from my hands, filling up webpages and web pages. I may well be unable to solely see, but my artistic eyesight is focused. I could tremble and ache from the seizures, but my hand is regular.

And I am self-assured that a person working day, I will be very well.

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