My Brain is a Bitch

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I came to consciousness on the floor Sunday.  I’m not sure how long it took me to figure out what was going on.  Everything was hazy.  It felt like I was coming out of a deep dream.  I couldn’t remember what had happened.  I couldn’t tell what was real and what was not.  It felt like I had been listening to someone talk underwater.  All I really knew was that I was sitting in a pile of clothes, on the floor.  Being on the floor is usually a huge clue that something went wrong.  It’s an ominous sign that I’ve had a seizure.  I don’t generally lie on the floor.  But I needed someone else to confirm it.  My brain just shorted out.  When you don’t remember, you don’t remember…  I never remember.   It wasn’t so bad this time.  I guess.  You learn to live with it.  Seizures are a part of my daily life.  I didn’t bite my tongue or injure myself.  I feel cloudy but not in pain.  I’m just so tired.  I’ll need to sleep it off for several days.  I’ll be in a deeply gray mood for longer than I can tell.  It takes a lot out of me, my brain who hates me.  I’m so glad that so many epileptics are creative.  What a price to pay!

I remember parts of it now.  The last thing I remember is the beginning of a simple partial seizure, what some people would call an aura, or déjà vu.  It swells within me, a sick feeling.  I went in the other room to take my medicine.  It was the morning, I hadn’t missed my meds.  It was the normal time I take them.  I was following the rules.  There was no water; I felt myself losing molecular stability.  I thought I should lie down in case I had another, progressively worse seizure.  I think I chose the floor.  My body doesn’t hurt like I fell.  There was a pile of blankets on the floor.  I believe I decided to aim for the floor before I ended up there anyway.  I remember that didn’t want to get into bed only to fall out.  Then— confusion.  I have no idea how much time I lost.  I “woke up” nauseous and gagging.  My husband reports the rest, the screaming and the things I said and did while I was out of it.  I certainly don’t remember screaming.  I don’t really feel too bad considering.  I didn’t bite the hell out of my tongue.  That is always a win.  I had a seizure, but not a convulsion.  Those are the worst.  This was just medium terrible.

I’m trying really hard to write, to capture it while it’s still freshly confusing.  It’s very hard to write.  It’s very hard to think.  My brain is tired.  The thunderstorm is over but the thick gray clouds remain.  I cannot do much of anything for many days after having a seizure.  I don’t want to.  My son had a soccer game but I stayed home.  I wasn’t about to go out and have another seizure in the middle of a 7-8 year old soccer league.  I hope that I did not have one while the rest of my family was gone, but I don’t know.  I can never tell really when I’m “Gone Again.”   So, that’s why I don’t drive, even though I desperately want to.   There are no rules to seizures.   I am a hazard to myself.   I have to choose the floor some days.  It’s not going to come crashing up to meet me if I’m already there.  Sitting down isn’t enough.  I gave myself a concussion once when I sat down and then I promptly fell out of the chair face first.  I’ve fallen out of bed many, many times.  Falling is, in fact, one of my worst fears.  Is that any surprise?

May the road not rise up to meet me, but stay very, very, far away, on the ground where it belongs!

23 Comments

Filed under Living w/ Epilepsy

23 responses to “My Brain is a Bitch

  1. Nikki

    You know sometimes I wonder why I am so tired during the day…….maybe I am having more seizures at night than I realize?????

  2. That is always my fear. I went undiagnosed for so long because the majority of my seizures were nocturnal when I was a child. It’s so easy to miss seizures. I hope you aren’t having any Nikki. XOXO

  3. You captured it what it’s like to have a seizure really well. Good for you for pushing yourself to do it so soon after one. I know that post seizures fog well. I also know the feeling of needing to sleep, being angry that your brain has failed you, and feeling disappointed that you’re missing things like children’s soccer games. I’ve been there. You’re right. It is a bitch. Thank you for sharing.

  4. Thanks for reading!

  5. Evette

    Thank you for Sharing! My son has seizures, is autistic and non verbal. So he unable to tell us how he feels or what is going on. So he is always being watched. So reading what you feel and helps us to understand what he feels! Thanks again!

  6. Thank you for reading, I’m so glad that you found my blog to be helpful!

  7. Dougie

    Your words describe the horror that is my life. Only those who go through it can fully understand it. Seizures and epilepsy have cost me my career as a police officer and my daily drive as a person. I hope one day we are all free from this God bless you all!

  8. Thank you Dougie. It feels great to get feed back from others that understand my suffering. And yes, hopefully someday we will have “Not one more second lost to seizures.” Hang in there! Thanks for reading.

  9. 7of77x7

    Thank you for sharing. I’ve discovered your blog through Twitter. I’ve volunteered in the school for special needs children for about six months. The ones I’ve worked with have various forms of epilepsy. Then, a number of years later, I began volunteering in The Special Gathering where they have members who also have the same malady. I hope you are doing okay. Looking forward to reading more of your blog entries.

  10. Mary-Ellen

    I really enjoy reading your blog. Sharing your experiences will help remove the mysteries of the disease to others. My father had epilepsy and it was kept very secret from us. We were told all kinds of bizarre things about his seizures when we were kids.

  11. When I was first diagnosed in 1997 I only knew one person with epilepsy. I was terrified. When I finally found epilepsy.com YEARS later, I was so relieved to find other ppl like me. I’m sorry your dad felt the need to keep it secret from his kids. It’s such a scary thing. Hopefully things are changing now. I hope the stigma will be completely gone somday. Thanks for reading Mary-Ellen!

  12. Angela

    Keep writing Kat! You have something special going on here! It looks like this medium can help many people, in real time.

  13. Mary Summers

    thank you so much for sharing your story with me. I myself have epilepsy, mine was caused from a brain tumor in my left temporal lobe it was a grade 2 malignant tumor. of course there is a lot to my story I’ve had seizures for over half my life and I’m 34 years old. and I’m still not seizure free. I have never met anyone personally with epilepsy, twitter is helping me and Facebook is helping me very much with social support. thank you!!

  14. Thanks for reading! I’m glad to meet more people living with epilepsy! Tweet at me!

  15. Elanor Wainscott

    Thank you for writing this. Life is a bitch right now. I have been diagnosed with Epilepsy since last May. I have been taking Keppra. I did have a grand-mal seizure while I was at the park with my dog last July. That was my last confirmed seizure. I suspect I may have had one in my sleep back in March, but I don’t have someone who shares my room so I don’t know for sure. Then, this past Wednesday evening I had one while I was out to dinner at Outback Steakhouse. I’ve been living in Richmond for the past seven months, but now more than likely I’ll have to move back in with my parents. Gone is the freedom of the last seven months. The worst part of it is that our house is a cluttered mess, so I’d be better off in Richmond. For another thing, my dad is retired, so I’m lucky that he is around most of the time to drive me places. However, he is 74 years old and doesn’t pay as much attention as he used to. On Wednesday night I had to inform him he had turned the wrong way onto a street and this was two hours after having my seizure! Then, on Friday I accompanied him on some errands and he gets into a minor fender bender. This next 90 day driving restriction is not off to a great start. It is going to a long 90 days.

  16. Yes, epilepsy really is a bitch. I’m sorry to hear about your recent seizures. I hope you feel better soon. Stay strong!! KT

  17. It is a curse, a burden on my friends, family, and co-workers. As you said, it’s a bitch! I’m not sure if I’ve ever seen a better description of that feeling, or aura. I suffer from simple partial sz as a result of a head injury. There is nothing more unsettling than knowing it’s coming, trying to talk yourself into thinking you can push through it and fight off, while knowing that you cannot stop it. You have provided me a way to finally describe to my family what it feels like before and after an episode occurs. You all have a situation worse than mine and I appreciate you sharing you experiences.

  18. Thanks for reading, I’m glad it helped you. Hang in there.

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