Lived Experience (Part 2)

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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)

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

Published by 5thgenerationgirl

Tammy Wynette is a mother of three and a “G-MA” (grandma). Born in Warren, Arkansas, she currently resides in Sacramento, CA and is pursuing an AA degree in English at American River College, with plans to transfer to California State University, Sacramento (Sac State). She is an active leader and role model in her community, she works with teens sharing and teaching poetry, as well as providing insight for young parents to prosper. She has certificate from NAMI (The National Alliance on Mental Illness) and is a trailblazer & Griot, keeper of stories/traditions passed down from her ancestors. As an Author and motivational speaker it’d be an honor to present at your events to inspire, encourage & let our VOICES be heard! She has short stories and poems published in Our Black Mothers Brave, Bold and Beautiful!

39 thoughts on “Lived Experience (Part 2)”

  1. When I was younger, my mom used to suffer from seizures. She didn’t get them very often but the fear of her having one was always lurking, that helpless feeling is terrible. Thank you for sharing this, Tammy. Love your prayer, my friend .💕

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  2. I have to admit that I would be one of those people who wouldn’t know what to do. It must be worrisome to know that you could have an event at any time. And frustrating that the doctors don’t seem to believe you. This frustration is something I am very familiar with. I have had health issues in the past where I wasn’t believed and even told I was making things up. There have been studies that prove there is a general bias in healthcare where women are given less credibility and believed less than men. These studies also indicated that women of colour have an even harder time being believed and receiving proper healthcare. You, my dear, are amazing to be able to navigate your condition with little or no help. All the best to you and your children.

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    1. Thanks, this is a small example of why I left the Healthcare field in my twenties. I didn’t like how certain people were being treated & at that age I was ignorant in not knowing what to do about it. I’ve had no choice but to tackle this on my own & also the reason I keep a detailed health/medical journal.

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  3. I’m so sorry you have had to struggle with your seizures and their effects but also with the incompetent doctors who haven’t been able to help you. I long ago gave up on regular AMA types for my sole health care needs. I’ve been lucky to find holistic MD’s, naturapaths and other alternative healers who were able to pinpoint the source of things and diagnosis and treat what was going on much better than the AMA doctors. Take care of yourself 🙂

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  4. Beautiful post- welcome back. I grew up with a neighbor girl who had epilepsy and it was so hard for her. You feel so powerless as an observer when seizures happen – especially as a kid.

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  5. I’ve only encountered someone once having a seizure. It was in a public place right outside the subway entrance. Thankfully there were others around who knew how to respond and to help this poor young lady but it did look absolutely terrifying.
    I can’t imagine how hard it must be for you to live with this constant anxiety and stress and for your kids to feel that way too. But it is reassuring to know that you have informed yourself and your kids. That’s half the battle.
    Best wishes and take care.

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  6. Tammy, I had to sit down and allow your message to sink in, in between my sobs. I know that you have discussed this condition with me, but it’s still emotional and I respect and appreciate you sharing this experience, your experience, with others who may have or have not experienced such occurrences. While I have never seen someone (that I know of) experiencing a violent seizure as you first did, what should you put in their mouth to suppress their tongue? I see where you said some professionals do not agree to put anything in their mouths, and you mentioned a cushioned tongue depressor. What would be considered a cushioned tongue depressor?

    Typically, we don’t walk around prepared for or expecting to encounter someone having a seizure, but at least knowledge and know-how are the best powers that we can have. I truly appreciate you sharing such intimate experiences with us. But God bless you for the awareness you have presented to us so that we can remain empowered. Love ya girlfriend and take care!!! 🙏🏼🤗💖💐🤔🤜🏼🤛🏼😉

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    1. I appreciate you Kym, but please no need to be emotional, I got this & I promise you 🤪. My main concern & what bothers me are those going through anything similar. Not necessarily epilepsy, but anything where you can’t even depend on the professionals for help. That’s when we have to trust God & rely on one another. In your words Booyahh, lol. Is that how you be saying it?.
      Ps. I’m going to see if I have any more tongue depressions & send you a pic.

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  10. Thank you for teaching us about what it’s like to experience this first hand so that we can be better equipped to lend a helping hand. My sister suffered from seizures throughout her entire childhood.
    When I was in college I cleaned houses and one of our regular clients begin to jump up and down in her kitchen while holding a butcher knife. I ran for my life and called 911 while I was running out the house. I didn’t know what was happening and all I saw was a butcher knife. When helped arrived we all eased back to the property and learned that she was having a seizure. She later gave us each a a$20.00 tip for calling for help but I felt so bad for running and I still do.

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    1. You shouldn’t feel bad for what you didn’t know and now that you do that experience has turned into a positive because of valuable growth. You’ve evolved my dear, be proud. I appreciate you sharing a perspective from the other side because I never know what people see, think or feel during my seizures.🥰

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      1. Thank you! Yes it’s very scary to see someone going through something that they can’t control and you can’t help them. So I can not even imagine what it’s like to actually have it happen. Sending you nothing but prayers and positivity 🙏🏽

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  12. When I was in college in the 1960s I had a friend who experienced the auras you talked about just before her seizures. She hid the word epilepsy in her life as I hid the word homosexual in mine. We were good friends. I’m glad you have family and friends who want to support you.

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  13. You’ve faced tough times with seizures, but I’m glad you’re positive and recognise it as an existing issue in you and even willing to create awareness about it. I have a younger brother who looses himself terribly when scared, say when he has done a mistake and knows he’ll be punished. He feels extremely scared and even seem out of his mind. I’m afraid to even begin to think it might be mental illness. But whatever the case, I’d be very willing stand by him and help him through it. I really love him. 😌❤

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  14. Thank you so much for sharing this candid personal account of your experiences. I have a close cousin and also grew up close to a little boy next door that had epilepsy. Since I always was exposed to it, I did feel fearful like some people do, but it’s still hard to understand from the outside looking in. Because my cousin and friend felt different because of it, they almost never talked about it, and by way of honoring their seeming preferences, I didn’t usually talk about it either. I can see now that it may have been better if all of us had talked, so we all could have come together with full ease knowing we shared understanding.

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      1. Yes, and with the separation due to the pandemic it seems people are talking to each other less instead of more. Hopefully your words will encourage more and better communication and sharing. Thanks again!

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