Owhen — My Journey With Epilepsy

[ehinOWHEN]

Hey Everyone,

Honestly it’s been a genuine struggle getting to open up to you guys about my personal struggles with this condition because I was incredibly worried that I’d be stigmatized by the general ignorance of the people from my country but all I’ve received here have been love and support and I couldn’t feel more grateful and safer here. So I think I could let it out……
I was diagnosed with epilepsy in 2020. Whilst I was still in school. Honestly I have an hypothesis that the covid vaccine gave me this condition tbvh. Because I literally had my first episode weeks after I took the vaccine... But this could just be me overthinking lol
Whilst in school, my uncle was the one responsible for my fees and everything. But sadly he passed in 2021 and despite all the health challenges I had to complete my schooling(barely) with just my girlfriend’s(now my ex) support.
To be fair my father is poor. But this man would go months without even checking up on me. No calls, nothing.
In 2023 when my ex left me. I had no one to live with, and the cost of living by myself was becoming too expensive. I even tried crowdfunding. I raised some money but it wasn't as successful as I'd hoped. So I decided to go live back home with my father and stepmom(my mom d*ed when I was 8) in January of this year.
Living with him was terrible. I still was responsible for my own feeding, and buying my meds but at least I had someone to be there for me when I have any major episodes right? so I thought.

Then it happened. In May I had a Major episode, a confusion spell from the narration my father gave.
Next thing, I found myself in a church, chained in an uncompleted building alongside psychotics and schizroprenics
Apparently my father believes epilepsy is some satanic attack or manifestation and took me there for 'deliverance'....

I begged this man, that I did not give consent to this, that he should take me to a hospital. He refused. He said I have tried "english" with no cure, that let's try "deliverance "

That's how I was chained there for over six weeks.
I had cut through the chains with a razor blade and two metallic spoons. and fled and took myself to the hospital.

After getting treatment I went back to my father’s house. He refused to let me enter the house. He said since I'm claiming to know more than him, I should go deal with my problem myself that he has nothing to do with me...
I begged and begged. I even took the matter to the police, they begged him and he refused and they said there was nothing they could do since I was above 18.
Sigh
The church he took me to for deliverance was not his main church. In his main church he's even an elder. I took the matter to his main church and the bishop. Same result.
All this happened in August.
Since then I've been staying at a hotel, alone, completely funded by a friend of mine that lives in the US. they've been the one paying for literally everything. Food, hotel bills, meds and the occasional hospital visit.

In all this time, not a single call or check up from my father. Absolutely none. Sigh. I've joined a couple discord epilepsy groups, to just build connection and rapport and distract myself from how sad my life’s reality is. It's a miracle I've not even contemplated su*side. I still feel I have a lot to offer in this world.
Being part of this community has been a blessing, and I’m truly grateful for the support and connection on here.
If you were in my position what would you do?
How would you handle these challenges and what would keep you going on the hardest days? I’d really appreciate some thoughts and advice

 

[Porkette]

Hi OWHEN,

I'm so sorry for all that you have gone through, but I can relate to it a little. I started having seizures when I was 10 yrs. old
and by the time I was in 8th grade the public school kicked me out of the school saying that my seizures were disrupting
classes and one teacher belted me in the head leaving the side of my face black and blue but she got fired thank goodness.
Then I was shipped off to boarding school for 3 yrs. and my parents weren't having any connection with me except for the
holiday when they would come and see me or bring me home if I had a long vacation. My mom told me she couldn't deal
with my epilepsy and by then both of my parents cut me out of the family. I kept in touch with my grandparents but if
I wanted to see my mom I had to pay her to see her. Over time I didn't let her or my father push me around and I got a job
and took care of myself buying my own meds and paying rent then I went after my parents for child abuse and abandonment
and that's when they all of the sudden wanted me back in their life. I started writing a book titled "Echoes of Emptiness"
and that's what really got me moving and I got a good job working in public school in Special Education. It was there
that I could connect to some of the students who had neurology problems.
When it comes to church I have been reading the Bible for over 20 yrs. and in the book of Mark it talks about a son
who is having a seizure so epilepsy has been going on since Biblical times.
What you may want to do is get on your feet and take legal action against your Dad and if you aren't working try
and find a job so you can get by in life because you need to think about when you get older and how you will get by
if you don't have any retirement coming in. I wish you the best of luck and May God Bless You!

Sue

 

[ehinOWHEN]

Hi OWHEN,

I'm so sorry for all that you have gone through, but I can relate to it a little. I started having seizures when I was 10 yrs. old
and by the time I was in 8th grade the public school kicked me out of the school saying that my seizures were disrupting
classes and one teacher belted me in the head leaving the side of my face black and blue but she got fired thank goodness.
Then I was shipped off to boarding school for 3 yrs. and my parents weren't having any connection with me except for the
holiday when they would come and see me or bring me home if I had a long vacation. My mom told me she couldn't deal
with my epilepsy and by then both of my parents cut me out of the family. I kept in touch with my grandparents but if
I wanted to see my mom I had to pay her to see her. Over time I didn't let her or my father push me around and I got a job
and took care of myself buying my own meds and paying rent then I went after my parents for child abuse and abandonment
and that's when they all of the sudden wanted me back in their life. I started writing a book titled "Echoes of Emptiness"
and that's what really got me moving and I got a good job working in public school in Special Education. It was there
that I could connect to some of the students who had neurology problems.
When it comes to church I have been reading the Bible for over 20 yrs. and in the book of Mark it talks about a son
who is having a seizure so epilepsy has been going on since Biblical times.
What you may want to do is get on your feet and take legal action against your Dad and if you aren't working try
and find a job so you can get by in life because you need to think about when you get older and how you will get by
if you don't have any retirement coming in. I wish you the best of luck and May God Bless You!

Sue

Hi Sue,

Thank you for sharing your story with me. It’s incredible how you managed to pull through such difficult times on your own, especially finding the strength to go after your parents and build a stable life despite all the challenges. That truly gives me hope that maybe one day I’ll be able to do the same.

I did consider taking legal action against my father when I was especially angry about everything, and I even reached out to a couple of lawyers. But the costs were overwhelming, and I just couldn’t afford their fees. Now, I find myself exhausted—sometimes I still feel like I want him to pay for what he put me through, and other times, I just want to focus on stabilizing my own life and distancing myself from him entirely.

Unfortunately, it’s not easy to earn a living right now. I was actually studying to be a data scientist last year, but my laptop broke during a seizure, and I haven’t been able to replace it. Without disability support here, finding work or even getting the resources to study has been a huge challenge.

My friend who’s been supporting me and I are considering crowdfunding to cover basic needs and hopefully get some stability. I’d really like to set up a GoFundMe, but since it’s not available in my country, I’m hoping to find someone who could help set it up for me. I really hope I can find someone. I’ve asked a few people and they’ve not been able to help set it up.

Thank you again for your kind words, Sue. Hearing your journey has given me a little bit of renewed courage, and I hope one day I can look back and feel proud of how far I’ve come too.

Wishing you all the best,
Owhen

 

[Sabbo]

Hello. I've had epilepsy since childhood, but it wasn't diagnosed until I was 14, after I had some tonic-clonic seizures. I'd often complained of odd feelings in my head--it turned out they were simple partial seizures. They were diagnosed after one occurred during an EEG when I had the tonic clonics. About 25 years ago, I began having complex partial seizures as well. Those have been very troublesome for me. I have no aura before them, & no recollection of them, either. I depend on witnesses to tell me how long they lasted and what I did during them.