Shake, rattle and roll (my life with epilepsy)

I've briefly mentioned epilepsy and seizures on my blog before, but I've never really explained them. Short answer - I have seizures from time to time. They suck, but I can deal with it (usually).

The long answer is, well, long.

History
For as long as I can remember my Dad has had epilepsy. One of my earlier memories is when I was about six, and Dad had a major seizure when he was home with just me, and my then 3 yr old and infant brothers.  I remember trying to help, trying to take care of my Dad and my brothers, but feeling scared and not knowing what I should do. Seizures have always been both a normal and a terrifying part of my life.

In high school, I started having spells where I would get fuzzy headed and black out. At the time I just assumed that  they were caused by me not sleeping well or my bad habit of skipping meals. I had a few awkward moments of passing out in after school drama rehearsals, and once collapsing mid-shower, but I didn't think too much of it.

The rare blackout and even rarer collapse kept up throughout college, but I always shrugged it off as the result of poor habits. In my junior year, the black outs became more frequent. And then the shaking started. I would start to feel weak and light headed, then an arm would start to twitch and jerk about uncontrollably.  Soon it wasn't just happening to my arm.

I didn't want any of this to be real, so I just tried to ignore it. When I collapsed into a seizure in front of my public policy class at the end of a presentation, winding up in the emergency room, I couldn't ignore what was happening anymore.

I had just started dating Zach when my hospital visit occurred. He was the first person I called, the person who came and picked me up, and took care of me for the rest of the day. At that time many of our dates ended with him holding me in the back seat of his car as I convulsed, trying to dodge stray blows and singing off-key to try and keep me calm. In some ways the seizures forced us to open up and trust each other with some of our more scary and real parts early on. We've learned how to deal with them together, and I think that forced interdependence helped us to grow close in a hurry. My seizures have plateaued for the time being, but coping with and understanding them has increased dramatically.


What it's Like
Epilepsy is caused by electrical signals in the brain misfiring, which can cause seizures. Essentially, it's like your body is electrocuting itself.

When my head starts to get fuzzy, I know one is coming. Everything is a bit out of focus, off by one degree; my brain just won't work. I'll try to read something, but each word takes several tries to comprehend, let alone put a sentence together, assuming I can remember that I'm trying to read something to begin with. In some ways this is the worst part, being physically fine, but unable to think or reason or understand through the static. I almost want the seizure to just happen so I can get my head back.

Gradually the fuzzy headedness will start to get worse, to the point where I'll definitely black out if I stand, and maybe even if I sit. Usually the shaking will start then. The seizure is always a little different. On good days, it will stay contained to my right arm, just that one body part lightly twitching, almost controllable. The pain will be minimal, I'll stay coherent and able to talk. I usually joke around to try to lighten the tension, and just wait for it to pass. I'm almost annoyed by the lack of pain with the small ones, that I can feel so fine, but still be out of commission on account of a crazy arm.

Sometimes having a seizure is more terrifying.  A few weeks ago I was feeling fuzzy headed, so I went into the kitchen to eat something (eating right can often help me feel less fuzzy). As I debated between an orange and ice cream, it sucker punched me flat on my back, the force almost crushing me and leaving me gasping like a fish out of water. Zach was in the next room, behind to door, with sound-blocking headphones. I tried to scream or yell or do something, but I couldn't control my mouth enough to get sound out.  The fear of being so alone and helpless was overbearing. I couldn't do anything, not even wipe away the pain tears staining my cheeks. I could almost see the pain coming of me in red hot waves as my muscles tensed and flailed so hard I thought they would break. With the panic of it all my shaking became half epilepsy and half hyperventilating fear. I was probably only alone for a few minutes before Zach realized I had been gone too long, came in and cradled me through the last few motions and tears, as I clung to him with all the strength I had, trying to find solid ground.

When it ends I feel weak, and stay in the fuzzy stage for a while as my body gradually works its way back to normal. Usually the whole cycle only takes a few hours, but sometimes they hit me in waves, like an earthquake with aftershocks and I'm out for a few days instead of a few hours. I usually only get them about once a month, maybe every two weeks, or so. More when I'm stressed or tired, and some weeks they seem never ending. But, sometimes they don't make so much as a peep for 3 months.
Most of the time epilepsy is just annoying. For a girl with an active mental life, taking that away for a few hours seems like a low blow. I hate the days when I have plans, but cancel on account of a little tremor that makes me afraid for worse. I hate sitting there in a fog, unable to do anything until my body just gets it over with. Sometimes its not the seizures themselves I dread so much as the way they can run my life. If I could have 1,000 bad ones in one day and get them over with and have my life back, I would.

Fortunately I've gotten better at dealing with epilepsy. I can generally tell when a seizure is coming, so I'll just try to stay home and lay low until it passes, unless I'm feeling stupid and stubborn. I've even been able to suppress them when they rise up in public, though I pay for the effort latter. It's a bit like a battle of wits and will between me and my epilepsy, and I'm starting to master the strategy. It sucks, but it I'm gradually learning how to have power over it, to ride the waves it throws at me.