My Personal Seizure Story

As you know this month is important to me because it's epilepsy awareness month. I've taken the time this month to post very little about my business and more about my epilepsy life. My goal is to raise awareness about epilepsy, but not only to be able to do seizure first aid. I want people to begin to look beyond seizure first aid and know what it means to befriend someone who has epilepsy. 

Every story I've posted has been near and dear to my heart and I'm going to try my best to create a post that will explain every one of them in brief detail. 

In my first post on Facebook I left my seizure profile up for anyone to read so they can learn about my epilepsy story. My posts gradually grew from there. I'd like to share the most pivotal posts that I can only hope changed the way people think of epilepsy, and people living with it. 

My Epilepsy Profile

The purpose of my epilepsy profile was to give people a small view of what epilepsy is in my life. My goal in this post was to show people that even though I live with this condition, I still accomplished many things in my life. I also made them somewhat aware that I developed Major Depressive disorder after having epilepsy for so long. Here's what I posted: 

Age: 30

First Seizure: 9 months old

Official Diagnosis: 12 months old. 

Types of Seizures: Generalized seizures, and focal or simple partial seizures aware and unaware. Electro graphic seizures. With an Aura. 

Seizure Triggers: Stress, Illness (infection), Poor diet, Lack of Sleep, Inconsistent Work/ Life Schedule otherwise known as swing shifts, Strong Smells, Intense Emotions, Too much Caffeine, Too much Screen time.

Hobbies: Anything involving theater and creative arts. 🤷🏾‍♀️

Accomplishments: BFA(2020)and AA(2012) in Fashion Design, Certificate of Project Management(2016), Teenage Entrepreneur in 2 magazine's (2005). 

Family: Husband Victor Michael Borders Jr. , Kids- Anya 8yrs 💜, Victor 5yrs 💜, Faith 3yrs 💜, Nerissa 1yr 💜 (💜=has had epilepsy or 1 seizure) 🤰🏾David 21week womb child.

Other Diagnosis Epilepsy Related: Major Depressive Disorder

How would you say epilepsy has impacted your life? 

🤷🏾‍♀️ I grew up with it, and every milestone I faced transformed my seizures over the years. I've had both generalized (grandmal) and focal (petite mal) seizures. Although it's common people still don't know much about it. They just recently linked mood disorders to epilepsy, and I remember being rebuked heavily for depressive thoughts by most adults and told that I really had very little to worry about as a teenager in a harsh tone simply because I did not have to pay bills. I was a teen with epilepsy which set me apart by default, and made things complicated like getting a driver's license, being able to move around as I please. Location having to be considered each time I move for public transportation. How I work and make money had to be considered because I didn't want work to cause a seizure spike. The worst was the religious folks(I did not say Believers in Christ, cause they weren't acting very Christ like) telling me that I just didn't have faith, didn't want to work hard and I was making an excuse for myself, that I was disobedient because I could not do things the way they were suggesting because I was watching my triggers so I could stay healed. 

I never had a rescue medication at home because that was not developed when I was a kid. I probably needed it more as a kid because I stayed in the hospital for epilepsy a majority of the time. I still don't have rescue medicine as an adult. I just take my usual dose and a boost as needed per my doctors treatment plan and I also have biweekly therapy sessions to further reduce seizure activity. 

Any advice for a new diagnosed person?

Don't give up. You'll have to live a life of constantly finding alternatives but it doesn't mean what you want to achieve is impossible. It just means you had to find a different way to get to the solution. Get therapy because that will also be helpful in dealing with and watching triggers. It will also come in handy once you are recovering in the postictal phase after a seizure. Get around better support and make choices that are best for your health even if people disagree they don't have to live with your brain, you do.

After posting this mini profile, I had one comment from a friend on Facebook that my post was eye opening to her. She said it would make her a better caregiver of people with epilepsy forever. She said I gave her better insight, and I'm glad she felt that way because that was my objective. 

Being Pregnant with Epilepsy

In another post I talked about being pregnant with epilepsy. I am currently pregnant, and I'm on my 5th cold even though I'm a High Risk pregnancy. I've always wanted a huge family but k never thought it would be this difficult in my life. Here's what I posted:

I have my Neurologist, My OB/GYN, and then I have a Specialist that monitors the babies health from treatment of epilepsy, and then I have a Neurologist that specifically deals with Pregnant women who have epilepsy for my own treatment. I'm considered a High Risk pregnancy. 

One time when we were homeless in 2018 I was trying to fight for my kids childcare because the program I was in said I had to find a job to keep the care. It didn't work out but basically it was understood by staff and myself that it wasn't my fault and that I'd been searching, but that I couldn't find a job that would hire me since I was the one picking up the kids on time, and dropping them off after I had our daughter Faith. This literally left 3.5 or 4 hours total that I could work and still get kids on time. One of the women on that board asked me "What, did you have a high risk pregnancy and that's why you didn't go find a job!?! ME TOO THAT DOESN'T MEAN ANYTHING!"

Long story short I reported her to the CEO, cause that lady crossed me on ALL levels. I'm not telling yall this stuff to make yall mad or because I'm mad. I've already been through it, I've prayed and God has shown up on my behalf. I'm telling you so you won't make the same mistake with someone with epilepsy. At the end of the day I could have had a case with a lawyer and that's why I reported it to the CEO first. That lady was out of control. So much so that other staff in the meeting were alarmed at how she spoke to me. One lady had her hands up over her face in almost a defensive position (she was a minister and Dr.) and she felt every spiritual hit I took from that lady. 

Just want to tell you Epilepsy isn't easy, we get discriminated against all the time, and people don't care. My goal is to get people to see beyone seizure first aid. We need support overall, cause we get attacked almost EVERY day in every way, on a lifestyle basis. Seeing a doctor is literally one portion of our life. Literally. That helps with the treatment but it's only a little support and it doesn't stretch that far.

 

I didn't include in this post my current life being pregnant. Usually if I'm not pregnant maintaining my Phenobarbital levels is not as hard. However, when I'm pregnant it's possible that I have to increase my regular dose because of the wear and tear on my body. This is something that I kind of always knew but it became extreme in this pregnancy. Every morning I've been feeling as if I had a seizure while I was asleep. I had a Neurology appointment that confirmed this and we are going to do some blood work this coming weekend to prove this theory. If it's proven then we're going to raise the dose of my medication to a bearable limit and see how things go from there. There was even a suggestion to do an EEG and I think that would help significantly to see if this is true. 

SUDEP In My Family

WARNING: This part of ther blog might cause tears!

In the picture below is my Uncle Anthony Cheeseboro and my Great Grandmother Naomi Scott. They both died of epilepsy. 

I don't know when Doctors and scientists started calling it SUDEP (Sudden unexplained death from epilepsy) but I know I heard it for the first time way after Uncle Anthony's death in 2009. I think of these two all the time when I hear of SUDEP and every November. Stats on SUDEP is that every year 1 or 2 of 1000 people die from it. This is why I walk the way I do in my life. 

I already mentioned that intense unhinged emotion can be a seizure trigger for me. This has been since childhood, and I've learned to be incredibly self aware because of it. You're looking at a girl who had a seizure at Disney World because of over excitement! (You can read about that below)

Imagine what negative emotions do to me? I've been told on several occasions that I'm holding a grudge or that I'm bitter for walking through life with a filter by setting healthy boundaries and learning to say no sometimes. Once again I can't hold a grudge too long (not because I'm righteous either) because it's a seizure trigger. If I've cut you off for a season or ended a phone conversation that was unproductive, understand that I'm protecting my mental and physical health. Epilepsy Lives Matter to me especially as it pertains to my own. I have a husband and 4.5 children so understand that I'm trying to enjoy my life to the best of my ability and not miss anything. The last thing I wanna do is die from a seizure caused by negative emotions or high stress levels. That's why I do go to therapy and learn the tools I need to set healthy boundaries with others and learn to say no. I don't care if anyone likes me for it either, because it's not their health at risk!

You know how people say they see life differently after they experience a death in the family, and that they think life is too short? Well you're preaching to the epilepsy choir honey. 🤷🏾‍♀️ Try living with the threat of death all your life. Now try to imagine your life ending from a simple negative phone conversation or a bad 15 minute encounter with someone who crosses your boundaries? For a person like me that's life threatening. To someone else, it was something I should probably get over in a matter of days maybe even hours. I get tons of criticism from family and friends about being too sensitive or what not, but they don't have to live in this body. They don't have my brain, and since I'm the only one that has to live with it. I have to do everything I must in order to live a healthy life. All I want is peace in my life so I can be seizure free. So far I'm not, but I'm praying some day that I will be. 

I already have 2 relatives who died from epilepsy. This is proof to me that it can actually happen and that I'm not over exaggerating or just walking in paranoia about having epilepsy. There's nothing wrong with wanting to live life to the fullest without all the drama and issues. If I've been offended by anyone I try my best to forgive them quickly and to communicate with them about it, but this is why. This goes beyond seizure first aid, beyond my belief in Christ and trying to be holier than thou. I MUST be self aware on an EXTREME level because it will catch up with me if I don't. 

In ending remarks I miss my Uncle. He also had a form of autism, but he was the coolest dude on the face of the planet. Sometimes I wish my kids had met him because all he did is sing and laugh, and tell you how much he loved you. It may have seemed to be a bit much but hearing his voice in my head sometimes makes me cry, because I don't know anyone who would tell you at the drop of a hat that they love you like that. My womb child is going to be named David Anthony... if you didn't know now you know. 

My Seizure at Disney World

I said I'd talk about having a seizure at Disney World after experiencing intense excitement and anticipation. I wish I had taken more photos there to be honest because this happened so many years ago that I don't remember all the great stuff that I did there outside of getting the characters autographs. I do however remember having a grandmal seizure. I don't know how long it was. All I remember is walking into the most beautiful resort hotel. The kids room was amazing it was decorated with an outer space mural all over the walls. It was incredible. There was a bunk bed and I remember saying that I was going to sleep on the top bunk because my older cousin would also be sharing the room with me. I climbed up to the top bunk looked around and my heart was racing from just being there after weeks of looking forward to this. Then suddenly everything went black. When I woke up I was lying on the bed on the pull out couch next to my mom. My head was pounding and she asked me if I was okay. Mom said she didn't want to take me to the hospital and ruin my vacation because she knew they'd want to keep me there for observation. Like I said earlier, I didn't have rescue meds so being kept for days at a time just for observation over one seizure was something they did back then no matter what the length of the seizure was. This was a risk on my mom's part to opt out of calling 9-1-1. I was still postictal during the vacation and I loved it staying there but all I can really remember is walking around and seeing the sites more than riding anything interesting. I was only 9 years old so I mostly rode kiddie rides which was typical of me to do at the state fair. Thank God we took pictures or I wouldn't remember anything positive about this trip.  

I'm huge about taking pictures and creating memories today as an adult. The thing about epilepsy is that I can remember long term things but not short term. Pictures help with remembering things and I want to start making Photo albums and scrap books to remember. I can remember traumatic things in detail with no photo album or reminder which is torture. I used to be told I had a selective memory, but I have an epilepsy memory. On top of this having major depressive disorder causes me to forget things more often in high tense situations. I download apps and make notes to remember things all the time. I have at least 3-5 notifications to remember a doctor's appointment. One to schedule my ride for the appointment a month or week in advance,  one to tell me when to get up and start getting ready to go to my appointment, another to remind me the night before that I have an appointment, and 2 more alarms 30 minutes and 10 minutes before my appointment so I can try to get there on time. If I don't get it down in a calendar right away, the thought leaves me as soon as it comes and I end up in a loop of rescheduling and having to wait all over again for availability. 

If you follow me you see that I take pictures for everything. I'm not taking pictures to show people all the time. I'm literally doing it for me, and to be in the moment so I can remember them. I know people are sharing their seizure this month which I think is very brave. This may be looked at as a negative thing but I think it's heroic of these epilepsy warriors to post their seizure for epilepsy awareness. I even posted a video of my son having a seizure so that people can be aware of what it looks like to have an absence seizure, because there are different types of seizures. However, I would like to encourage you whether you have epilepsy or not to learn to be in the moment or you'll be in danger of making your life out to be a catastrophe. I have pictures I took of myself smiling on the train while I was homeless. I was usually headed to school with a sketch pad and my mp3 player on. You would never think I was struggling, but that's because I learned to enjoy the ride to school, to use that time to sketch (something I love to do), and meditate on what's positive so I can stay motivated and focused to get on my feet. You don't have to let epilepsy defeat you or anything in life for that matter. I've grown up with this and every milestone caused a seizure spike. You can still enjoy life, even if you are having a few seizures and issues related to that here and there. 

This month is important to me not because of Thanksgiving but because it's Epilepsy Awareness month. I hope my story has truly proved just how short life is as well as how precious life is and why it's important to work on yourself and set healthy boundaries so you can be in good health. At the end of the day I think that's something we should all strive for. I don't go to anybody's house for the holidays if I feel like I'm doing more tolerating than having true love and support. It would put me in a bad head space and defeat the purpose of all the hard work I put in to being healthy. I usually encourage people to confront the problems and to admit there's tension sho the cam be a stress free holiday. Most people ignore their feelings for the holidays and stomach somuch hurt and betrayal this time of year, but I can't because I'm striving for peace so I can ultimately live a seizure free life. I'm not saying I'm just not ready for those hiccups life gives me. I'm saying I'm prepared to do what I can to live to ther best of my ability and that's what this life is really about.