For those of you that may have been following along on Facebook, you know I had a really rough week. In the past 9 years of being epileptic, this is the worst it’s ever been. ‘Round the clock auras (feels a bit like falling, mixed with anxiety, and other things I can’t describe due to lack of actual definition). Up to 9 seizures a day. I have spent many days this week sleeping for 18 hours on average. Get up. Have a seizure. Lay down. Wake Up. Eat. Facebook. Have a seizure. Lay down. Wake Up. Get ready to pick up the kid from school. Have a seizure. Power through the postictal state. Get him started on homework. Snooze. Wake Up. Have a seizure. Take the kid to MMA. Have a seizure. Try really hard to keep it together. Go home. Crash on the couch. The rest of the night is much of the same as the morning once the husband gets home.
Living this…half life…is hard. I am sure there are people out there that have it worse than I do, but that doesn’t mean that my epilepsy impacts me in any less of devastating way on an emotional level.
My seizures live in the part of the brain that deals with “fight or flight” – I bet they light up that area like Christmas. When I come out of a seizure, I have heightened anxiety. Later, once I’ve calmed down, I have an aura and my anxiety spikes in anticipation. More often than not, the elevated stress seems to trigger a seizure. It’s a big old circular mess.
I stand still like a deer in the headlights. Everyone around me can see my demeanor has changed. I may have stopped mid-sentence. Or maybe I stood still suddenly while walking to the kitchen to get a drink. When this happens, my husband and son are keyed in. They are waiting like I am waiting. Will this aura turn into a seizure?
But my thoughts continue past that…
Will this be the time that something really goes wrong?
Crap, look at my husband’s face…he’s already stressed.
Oh, kidlett…don’t look at me that way. I already feel guilty that you have to worry.
Here we go…
I hate this.
Did my husband just ask me a question?
I hate this so much. Just breathe.
Please, someone get the pets away from me.
Close your eyes. Everything won’t look weird if you can’t see it.
I wasn’t sitting here a few minutes ago…yay seizures.
As much as my seizures affect my anxiety, it affects my mood in other ways, too.
When I think of the amount of responsibilities I put on my husband’s shoulder, it breaks my heart.
When I see my 9 year old son jump to attention every time I sigh or make a small gesture that in most cases would be normal…but I’ve perhaps performed these gestures or movements during a seizure. He’s hyper vigilant. We all are. But it hurts me to see my son on edge. He is mine to worry for. He is my satellite heart, living outside my body but always attached. He’s not supposed to worry about me. At least not this much.
When I can’t help out with my share of the housework, I feel guilty and worried. It’s not fair to my husband that he should work full time and come home to cook dinner and clean up a bit because I’m out of commission.
When I have seizure after seizure, I feel so helpless and lost. Will this be my life forever?
Before I know it I am stuck in a metaphorical pit. It’s dark. It’s lonely. It’s scary. All I have are my thoughts that like to drag me down until I have no hope left at all.
I want to stop existing. But I can’t choose that option, because for better or for worse, I have to try for my husband that is trying so hard for me. I have to try for my son, so that he can see that his mother was strong and persevered. So he can see that he doesn’t have to worry anymore.
But how can I climb out of this pit? I can see light when I look up, but I don’t know how to get there. I can hear my family calling me, but I can’t reach them. I try jumping. Screaming. Anything. The depression has caught hold of me.
I realized some time along the way that the first thing I needed to do is stop punishing myself for things I cannot control. I can’t control my seizures. I can’t control that I can’t always carry my fair share of the responsibilities. I can’t control that I struggle staying awake and functional after a seizure.
It’s hard. When you carry around such a burden of guilt for those who are caring for you, it’s hard not to punish yourself and fall deeper into depression. I still have my moments, but I realized I needed to get out of the pit, no matter how.
I build ladders.
In order to get out of the pit, I build myself a ladder everyday.
Get out of bed – one rung.
Get the kid dressed and ready for school – another rung.
Get out of the house – third rung.
Do a chore – fourth rung.
And so on.
Some days I only make it to one rung. Most days I can at least get three rungs on my ladder. And there are some days when I lay at the bottom of that pit, simply too exhausted to summon the courage to build my ladder at all.
I haven’t climbed out of the pit yet. And I don’t know when I will. But I know that some days I’m able to build my ladder half way. I can feel the sun on my face and see my family clearly.
So long as I keep building my ladder, I’ll be okay. And so long as I have my supportive family, I’ll have a reason to keep building until the pit is far behind me.
When you’re down and out – build a ladder. One step at a time. Slowly and gently. You will climb out of whatever pit you may stumble into so long as you keep building.