The first time I witnessed someone having an epileptic seizure I was 10 years old. Although never imagining that one day it would be me, I never forgot what I saw. Aside from the woman’s body jerking uncontrollably, what I recall the most is that no one standing around knew what to do to help her. I’m not sure why but over the years after that experience, I’d often still think about the woman. The next time I encountered a stranger having a seizure I was 29 and prepared in knowing exactly what to do; however, since then certain techniques have changed for such as what to do in preventing a person from swallowing their tongue. Since my episodes began (just before turning 40) some professionals say not to put anything in the mouth while others continue to agree with using a cushioned tongue depressor.
There are different types of seizure disorders which also have various causes. The most common form and one people are most familiar with are “grand mal” seizures. During my research and interviews I’ve learned that many are not aware of what’s known as “focal seizures” also called “aura’s”, which for me didn’t begin until about 6 years after experiencing the grand mal seizures. I was unaware of them occurring until my children began to notice and ask questions. An “aura” can best be described as a warning of a seizure approaching. It’s like an unusual sensation or feeling. In my experiences I’ve noticed my thoughts shifting and racing consistently. My senses are triggered by certain noises like a loud pop or motorcycle revving up and even certain odors such as fuel or the exhaust from a vehicle. Then at the same time I have a brief moment of Deja vu, panic or an overwhelming sense of doom. I describe it as memories of being a kid when I was in trouble and knew I was about to get a whipping, having that feeling that the world was coming to an end. These aura’s can last anywhere from a few seconds to 1-2 minutes as I go directly back into conversation or whatever I was doing previously without knowing it even happened.
I’ve been on the phone with someone, and they’ll call back to ask, “what happened”? Initially I’d be confused unsure of what they meant. Now, however I’m aware after I think for a moment and realize I have no recollection of saying “goodbye” or ending the call that it was due to me having a focal seizure. I’ve been out at gaming events and restaurant’s, thankfully with my children who recognize what transpired. I can only imagine how scary it must be for them even though they don’t show it and choose to put on a brave face. What scares me are the episodes of being in public by myself and losing consciousness. So far there have been three in the ten years since the seizures began. The first, which was about a year after they started, I walked out of my home about a half mile and only half dressed with bare feet (something I never do). I remember being at the corner of one of the busiest intersections in the city watching the light signal with the tiny silver man, not sure how long I simply stood there. I had/have no memory of going or coming and I only recall being barefoot because of the rock company between the intersection and home as my feet hurt traveling over the rocks that constantly spill over onto what hasn’t been a sidewalk in years. When I finally returned home, my children met me there in a panic due to folks in the neighborhood knowing me well enough to realize something was odd. At first glance around the house, it appeared someone had broken in. The screen was torn off the patio door, my coffee cup and a lamp were turned over on the floor, yet a break in didn’t make any sense because nothing was missing. Sadly, whenever I attempt to relay this event to my doctors, they look at me in disbelief or with a blank stare dismissing it without questions or any signs of concern. Eventually, I stopped making trips to the ER or mentioned it by the time I reached my third neurologist.
It’s disturbing that my children feel helpless and don’t realize they have been for the most part my main source of support. My son walks on eggshells around me, afraid he may say or do something to trigger a seizure. As much as I try to reassure him that leaving an empty glass on the table or walking on the carpet with his shoes on are not causes that trigger me, I clearly see it makes him nervous. Though since they’ve been doing their own research and now have a better understanding, they still worry because specialist have yet to and may never pinpoint the cause. It has ruined what I thought were friendships (see Green Eyed Monster). Some assume that because my memory isn’t what it was, they can manipulate and take advantage of certain situations. While I may not recall specific details word for word, I know what makes sense and what doesn’t. It’s not as simple as forgetting a name. The effects of my seizures are much more complex when it comes to fucus and learning new concepts. Sometimes it feels as if my head will burst like a balloon when taking in new information or struggling to remember things I’ve mastered, done hundreds of times over the years and was once extremely skilled at. Whether my lived experiences are with regards to epilepsy, mental health or trauma, it’s important for me to share because although I’m not a specialist or fully understand the science behind it all, unlike most professional, I certainly know the impact it has had in my own life which allows me to relate with others firsthand on a level they can’t. The goal is for my V.O.I.C.E. to provide hope for others who share my experiences. Aside from my children, my faith in God is what keeps me going so I’d like to share this devotional as I pray it gives you hope like it does for me.
Never Say Can’t
(Daily Devotional Feb. 21st 2022)
(Daily Devotional Feb. 21st 2022)
Jen was born without legs and abandoned at the hospital. Yet she says being put up for adoption was a blessing. “I am here because of the people who poured into me.” Her adoptive family helped her to see she was “born like this for a reason.” They raised her to “never say ‘can’t’ ” and encouraged her in all her pursuits—including becoming an accomplished acrobat and aerialist! She meets challenges with an attitude of “How can I tackle this?” and motivates others to do the same.
The Bible tells the stories of many people God used who seemed incapable or unsuited for their calling—but God used them anyway. Moses is a classic example. When God called him to lead the Israelites out of Egypt, he balked (Exodus 3:11; 4:1) and protested, “I am slow of speech and tongue.” God replied, “Who gave human beings their mouths? Who makes them deaf or mute? . . . Is it not I, the Lord? Now go; I will help you speak and will teach you what to say” (4:10–12). When Moses still protested, God provided Aaron to speak for him and assured him He would help them (vv. 13–15). Like Jen and like Moses, all of us are here for a reason—and God graciously helps us along the way. He supplies people to help us and provides what we need to live for Him.
Reflect & Pray
When have you felt incapable or ill-equipped for a task or role you felt God calling you to fill? How did God help you?
God, I’m so glad you didn’t leave me here on this earth to do it all on my own. Thank You for Your love and guidance and the people You’ve placed in my life