Epilepsy Awareness Month
November is a month chock-full of awarenesses, and as much as media literacy and family reading are important causes that I can get wildly passionate about, the third “awareness” is the closest to my heart. Epilepsy, much like any other brain disorder, is only marginally understood and research is difficult.
A brief overview for those who don’t know: Epilepsy, also called seizure disorder, is a result of a cluster of neurons misfiring and causing abnormal electrical activity in the brain. In many cases, the reason for the disorder is unknown; it could be congenital, acquired, or transitory. There are multiple varieties of seizure from short, barely-noticeable ones that effect only one part of the brain to 5-minute, full-body convulsions that effect both hemispheres. Treatment can range from daily medication to surgery to implants; some (non-medical professionals) also believe it can be controlled with natural remedies like diet or marijuana. Regardless, those who suffer from epilepsy have to cope with it for the rest of their lives – there is no known cure.
And my husband has it.
Not that it’s a problem. Mr. Man’s had seizures since he was eight (he’s 27 now) and has been on twice-daily medication since then, so it’s under control. At least…as long as he takes the right dose and every day. Which hasn’t always been the case. There’ve been two incidents when he’s had a seizure because he’d been hiding the fact that he wasn’t taking his drugs (for whatever reasons). The first wasn’t much of a deal – he was on the bus, fell asleep, and woke up in the hospital with a dislocated shoulder. The second one changed me.
There was no buildup, no indication that anything was wrong. I thought he was laughing at something – we were working on different things on different computers. I turned to look at the bed and saw my baby, eyes rolling up to whites, sinking into his own lap and falling backwards onto the bed, arms and legs going rigid. I sprang out of my chair and threw myself on the bed, panicked. He kept making horrible gurgling and growling noises, all four limbs jerking in short, strong movements, his heavily-muscled, six-foot-five frame rocking the bed violently with no signs of stopping. I had no idea what to do; my brain froze and locked up, providing nothing more useful than help!. I tried to hold down his arms and or roll him onto his side so he wouldn’t accidently inhale some of the seemingly endless quantities of spit pouring from his mouth, but I wasn’t strong enough to move 250lbs of dead weight. Huge terrified tears streamed down my face as I hysterically babbled; I kept asking him to just “come back” and “stay with me”. I could see the tinge of blood in his saliva from where he’d bitten his tongue. His heels hit the ground over and over as he kicked for what seemed like an age, his fingers locked in claws beating against his sides. He just kept going. Eventually, he came out of it, but he didn’t know where he was, couldn’t tell me his birthday, didn’t know his name. His pupils were enormous. I cleaned his face with shaking hands and peeled off his pink-stained shirt while he looked around like a stunned toddler. As he slowly regained his bearings, I crumpled.
I’ve never felt so helpless. Normally, I’m great in an emergencies – my brain shifts into automatic and does everything calmly and right. But this time, I don’t know what happened. Maybe it was knowing the details of what a seizure does to your brain. Maybe it was seeing someone so strong, so weak. I couldn’t help. I couldn’t do anything but wait and clean up afterwards. That night, I couldn’t sleep – every time he would twitch, I jolted out of my doze and every muscle tensed, prepared to relive the moment. Something inside me sort of broke. I know now that there are a few warning signs, and any time Mr. Man acts even a little strange, all my flags go up and the questions start. How will I react? Will I freeze up again? What if it’s in the car; will we wreck? I’m terrified that my husband might concievably die because I won’t be able to handle it. It’s always about me and my inadequacy to handle the situation; I’m embarrassed to admit the depths of this particular hole.
So. Yeah. Epilepsy awareness is pretty close to home for me. If you’d like to know more, check out some of the links at the bottom (particularly the first aid reading). There’d be a better ending here, but I’m a bit wiped out, so give me a pass this time. Extra wit next time, promise.
Recommended Reading
- First Aid for Seizures
- Seizures and Epilepsy: Hope through Research
- The Epilepsy Foundation
- Elsevier: Scientific Articles about Epilepsy
- End Trash Talk
Edited: November 16th, 2009
