Epilepsy

 After I tried to post this on Facebook, I was struck with a character limit that I was not aware of. It took me a hot minute to figure out how to get into this old blog. But, lookie here, I did it. If you can’t tell, I am extremely proud of myself for it. On with the serious stuff.

Dealing with seizures is hard. Coming to terms with an epilepsy diagnosis is life changing but finding out what caused my epilepsy is devastating.

I have what is called simple partial seizures in my temporal lobe. It’s called simple partial because I do not lose consciousness. I honesty have no idea what they really look like because I don’t know I am having them. The only way to tell is the diminished memory and processing issues. As long as we have them under control (which we do), I am allowed to continue driving. My last EEG showed no seizures where prior to medication, I had several during testing.

The temporal lobe plays a key role in how I communicate with people, my ability to access memories, use language, and process emotion. Every seizure causes some damage. I take medication that controls the seizures well but it does cause me processing issues. Knowing that I have the knowledge in my brain and not being able to access it is so frustrating.

Damage has the potential to cause me to not understand spoken words, have disturbances with selective attention, difficulty with identification of objects, difficulty learning and retaining new information, impaired factual and long term memory, short term memory loss, persistent talking, trouble recognizing faces, and emotional issues (anger, crying, joy, etc). 

That stuff is extremely scary. And something no one is looking forward to. I cannot even begin to understand how hard this will be for John as we age.

So, you can see how horrible this is and why I had such a hard time when I got this diagnosis 8 years ago. Coming to terms with what life was going to look like was extremely hard. But when it was all said and done, after all the tests (EEG, MRI, CT, PET, etc) were finalized, finding out why was the hardest. Epilepsy in this area of my brain is caused by a traumatic brain injury and repeated injuries to my head.

We poured over every single  injury and were able to pinpoint the issue after many days and months of searching. An outside force in my life caused the injury. I can’t go back and fix it but I can justify how I deal with the outside force and the people who allowed it to happen. I can learn to control it, make changes in my life to mitigate some of the symptoms, and move forward. But this is about abuse. 

I won’t entertain anyone who tries to make light of this or pretends it didn’t happen or that I should let it go. This will destroy my life and I have a right to be angry. I have the right to walk away.

It explains so much about my life lately and it’s really hard to come to terms about it. I’m crying tonight because I’m just now starting to really understand the gravity of this diagnosis. 8 years later. 

Epilepsy is devastating. Please be kind.