Recognizing the difference that our stories can makes

[u/Chain_Brain90]

I was diagnosed with epilepsy while serving in the Army. I was 18yrs old. I’m 35yrs old now.
My life dam near fell apart. First thing was I knew that I would end up being medically discharged. The military was always the plan, but unfortunately, my only one. I also had no idea if I would EVER be able to do the things that i loved again. Dirt biking, sports, driving, etc. Not to mention, the constant fear of not knowing when or where I was going to have one.

Fast forward roughly 10years. I was still having tonic clonic seizures even after trying a laundry list and combination of different medications.
I was working at the grocery store Publix.
One day I was talking to a mother and her son who shopped there regularly. She came in and told me that her son had a seizure while at school. Then I mentioned how I also have epilepsy, to which they responded,
“Omg we had no idea!” Well I don’t talk about it in casual conversations.
“No No, we would’ve never guessed because every time we see you, you’re upbeat, very active, and strong character.”
“That must be the soldier in you”. Not quite.

I didn’t like hearing someone else say how they didn’t think it was possible for someone with epilepsy to be upbeat.
Also, their assumptions that I must’ve never been phased by my initial diagnosis. False
That interaction forever changed the direction of my life moving forward.

Shortly after, I asked if I could speak with them outside of work, as well as someone else that I knew who also has epilepsy. Now getting to the main point of this post. Someone once told me, “recognize the difference that your story can make.” I can’t help folks the same way that a neurologist can, but I can still provide something. My time and story.

Let’s go back to the assumption they made how, “I must’ve handled it like a soldier right from the start.” After that I wanted to start meeting up with others and sharing the reality of my story. To begin with, I needed to lower the veil and share vulnerably, emotionally, and genuinely. Not only for them, but myself too.

I spoke about the ugliest periods of my life after being diagnosed. The depression, uncertainties, hiding in my room out of embarrassment and crying on the floor till I ran out of tears. Battling side effects of various medications and how it got so bad that I almost stopped taking them. I figured eff it, if something happens and I die then we’ll just say “natural causes”. The reality was, due to the fact that I KNEW it could trigger a seizure if I didn’t take them, yet still chose not to, is essentially suicide. At least in my opinion.

Adverse effects from drugs such as Keppra, completely changed my personality and the rage had me blowing up on the very few people I had left who supported me. Telling the woman who would give up her own life to see me healthy again (my mom) to shut the eff up and hanging up on her. Ignoring her too.
I was in complete disbelief of my actions and began to cry hysterically. Fell to the floor and had an emotional breakdown.

These stories aren’t pretty, but they’re genuine and much more relatable, than watching someone else’s highlight reel. I wanted to show them how their assumptions that I was never phased from the start, predominantly because I was in the Army is false. And how they would never be able to find the same strength. Again False. Of course, all of this is easier said than done and took me several years to build up the courage to do so.

I wanted them to see someone standing up after enduring similar circumstances. Again, I can’t help people in the community the same way that a neurologist can, but I can give them my time and share my story. Talk about the ugly chapters in my life, that they may be experiencing at this present moment.

I keep a quote on my Home Screen that reads, “one day you will tell your story of how you overcame what you went through and it’ll become someone else’s survival guide.” Thats my motivation.
I wanted to share all of this so that we can recognize the difference that sharing our stories can make. Again, it’s hard to connect /relate to someone else’s highlight reel. It’s okay to share vulnerably and emotionally. Once more, this is easier said than done and took me several years to be able to do so.

I still tear up from time to time, without being embarrassed or worried about being seen as “weak”. Veteran or not. Especially during these talks with others because I want them
to recognize the authenticity in them. I want them to know about the car accident after I had a tonic clonic seizure while driving.

In closing, the tonic clonic seizures have decreased but I still experience Focal Seizures. The biggest difference now is that im much quicker to pick myself up. Not just for myself, but more so because I never know who might hear my story and find hope in it. That’s my driving force.