March 1, 2023, started like any other day in our household. The sun peeked through the curtains as my younger son, full of his usual morning energy, jumped out of bed and headed straight for his favorite spot in the living room to catch up on his favorite YouTube videos. Little did we know, our world was about to change forever.
As we sat nearby, sipping our morning coffee and starting our days, a haunting, rhythmic knocking sound echoed throughout the house. Rushing to investigate, we found our son convulsing uncontrollably on the floor with his head hitting a wall. He was caught in the grip of a tonic-clonic (also known as grand mal) seizure. Panic set in, and we dialed 911, praying for help as we watched helplessly.
From Normalcy to Epilepsy
This was just the beginning of our journey into the world of epilepsy. Little did we know how much our lives would change from that moment on. That was his first seizure, but unfortunately, not his last. Sadly, it's gotten to the point that we have seen some of the same EMTs and ER staff more than once in the last year. We never imagined epilepsy would become such a significant part of our lives.
Epilepsy is a complex condition that is often not well understood by most people. Our family was unexpectedly thrown into this unfamiliar world, facing fear, confusion, and uncertainty. Every two to three months, without fail, we see our son experience another seizure, almost like clockwork. In January 2024, he endured three consecutive tonic-clonic seizures without regaining consciousness between them. This landed a very scared young man and his mom in the hospital for overnight observation. He bounced back fairly quickly, thankfully, but I still jump up and my heart skips a beat whenever he calls out for me, although it's almost always just to say, "Hi," or "What's for dinner?" The emotional toll of our child’s chronic condition on us as parents is immense, and the feeling of helplessness can be overwhelming.
The Impact of Epilepsy on Daily Life
Over the past year, we have seen more doctors, nurses, and specialists than I can count. My son has had multiple EEGs to study his brain waves, several ER visits, and enough blood draws to make a vampire happy. Nevertheless, we continue to seek answers and solutions to control his seizures. Our family's lives have changed immensely since his diagnosis. Taking a weekend getaway is too risky, and we can't just jump in the car and take a trip. We have to keep him out of swimming pools and away from any potentially dangerous situations in case he has a seizure. We set daily alarms and timers to make sure he takes his medications on time. We've also made sure to educate those around us about his condition, including writing down instructions on what to do in case he has seizures. It's a lot to think about!
Following his January 2024 episode, he began his second anti-seizure medication, which seems to be providing some relief. We recently had a glimmer of hope for some answers since he was scheduled for an inpatient EEG monitoring for his epilepsy, which was set to begin on March 11, 2024. However, we got a call at the last minute on Friday, March 8th, to say our insurance wasn't cooperating and they would need to push the test out another month. I had been desperately hoping for answers and a potential solution, so I was annoyed by the last-minute change. While I acknowledge that epilepsy is incurable, I remain hopeful that the doctors can help manage it so he can return to a semblance of normalcy.
Social Media to the Rescue
Without any close family members or friends with epilepsy, I turned to social media for understanding, education, and support. Platforms like Facebook and Reddit became more than just websites; they became lifelines, connecting me to a community of individuals facing similar challenges. Engaging in Facebook groups and Reddit threads has become a daily source of comfort, shared experiences, and valuable advice from those who have treaded this path ahead of us. Through these virtual connections, I’ve found a sense of belonging and empowerment, knowing we are not alone in this journey.
Just the Facts
I am still amazed by the sheer volume of information I have uncovered about epilepsy over the past year. For example, it may surprise you to learn that epilepsy affects approximately 65 million individuals globally, with over 3.4 million in the United States alone. Here are some other surprising statistics:
- 1 in 26 Americans will develop epilepsy in their lifetime.
- Each year, more than 150,000 people are diagnosed with epilepsy.
- Epilepsy affects more people than multiple sclerosis, cerebral palsy, Parkinson’s disease, and ALS combined.
[Source: CURE Epilepsy]
Another shocking fact I encountered was the number of different types of epilepsy. Although we're all familiar with the jerking types of seizures that are often depicted in Hollywood movies, many other types remain unnoticed or disregarded until they manifest as tonic-clonics, as was the case for us. It was eye-opening to learn about the wide range of symptoms and effects that various types of epilepsy can have on individuals.
Over to You
Our life with epilepsy is filled with challenges, but it has also been a journey of resilience, love, and unwavering determination. Each day, we cling to the hope that my son's seizures can be mostly under control and that he can start enjoying all the activities he used to — especially swimming! It will also be nice for our family to breathe a little easier every day.
Do you or someone you know live with epilepsy? I'd be interested to hear what resources you have found most helpful.
