Medicating epilepsy is sort of a tricky business—you can’t really tell if a medication is working until it’s not. There are no signs of improvement other than a lack of seizures, so it’s a total crapshoot. It’s “working” as long as you don’t have a seizure. You just kind of pop the pills and hope for the best.
No medication is without side effects; I know that. When I was first diagnosed, my doctor presented me with a number of treatment options with a heavy recommendation for Keppra, as it is the “drug of choice” for partial epileptics. But I shied away from it for one reason: it had the potential to alter my personality.
It had the power to change me, not just my epilepsy. And not in a good way, either—we’re talking hostility, anger, aggression, irritability, mood swings, anxiety, and hallucinations. (As if I need any more of those things in my life…)
Those words, that risk, terrified me, so I said no. No, no, NO.
So I picked another drug from the list, a rather innocuous-sounding one called Lamictal, whose worst side effect was a fatal, skin-eating rash (among others, all of which sounded better than being something other than myself).
I played it safe and took Lamictal.
You can’t just start and stop taking epilepsy meds. That can really mess you up, so you have to ease into them—you start at a super low dose, one that won’t even control epilepsy, and you work your way up to what you need. (This is yet another complicated piece of the guessing game that is epilepsy management…)
I knew as soon as I started taking Lamictal that I’d made a mistake.
Not only did it make me super tired, but it destroyed my skin (I still bear those damn acne scars), it made my vision weird, and it made me want to kill myself.
There are countless commercials for medications that cause “suicidal thoughts,” which is a phrase that gets thrown around so much that it loses meaning, but let me tell you—they are no joke. They are the most irrational, bizarre ideas. They just pop into your head with their casual poison: Hey, what if you committed suicide today, okay? Okay! Put it on your to-do list!
Killing myself: It seemed as rational and mundane as buying milk.
I had the meta-awareness to prevent myself from following through with these crazy plans, so I called my doctor, and we began the slow process of stopping this drug.
When I started the next drug, my doctor once again recommended Keppra, but after my last nightmare drug, I was loath to try it. After all, it could turn me into a raging super bitch.
So we tried another. Its side effects were annoying (tiredness, dizziness, vision problems, coordination problems, dry mouth/eyes/nose), but I didn’t want to kill myself, so I was willing to put up with the other stuff. And it seemed to work.
Until it didn’t.
I had that super seizure while I was driving, and then I knew I had to try something else.
My doctor brought up Keppra again (and brain surgery, which also sounded terrifying), and its risk weighed heavy in my mind, but after surviving suicidal thoughts, a year of medical leave, and a seizure-induced car accident, I figured I didn’t have much else left to lose…except my personality.
So, I took the Keppra prescription, and my hands trembled as I took that first dose, that yellowish horse pill almost bouncing out of my palm on its way to my mouth, but I sucked it up and swallowed it down.
You know what happened next?
Nothing, nothing, nothing.
None of my fears about taking this medication came to pass. I didn’t turn into a bitch. (Well, not any worse than usual.) I didn’t have any suicidal thoughts. I didn’t get any more zits than usual. I didn’t get super tired. And I didn’t lose myself.
I’m still me. Maybe even more than I’ve been since my diagnosis. Time will tell. I still don’t know how well it’s working to control my seizures (since I can only assume it’s working until it’s not), but I am learning to take one day at a time. It’s all I can do.
There’s a lesson here: I let all that damn fear about what might happen keep me from enjoying and anticipating the good that willhappen.
Ohhhh, what a powerful metaphor that one was.
Fear and worry are powerful motivators, but only if we allow them to be. We really don’t have any idea about what’s going to happen, and a lot of the things we worry about don’t even come to pass. Worry is a waste of the imagination, and it just feeds our fears. It’s a vicious cycle, and it’s one that we are responsible for instigating.
It’s best to just admit that—it’s a hard pill to swallow (pun completely intended), I know, but it’s impossible to live a full life if worry and fear keep you from doing so.
So face your fears.
Imagine something more beautiful than worry.
And take your meds. Your doctor really does know best.
I was paging through my prayer journal this week, which always proves an interesting perusal. I do it every once in awhile, and it’s always fascinating and painful and bittersweet and wonderful and just…good. It’s good to see where I was, to see how my needs have been met, to be reminded that I am being cared for, that my prayers are important, and that they are heard.
But they are reminders, too, of my pain. Those prayers are some of my most raw and honest writing, words I hope no one will ever see. They are so personal and so ugly and so desperate, and they are so often born of sheer hopelessness. They are, I admit, often a last resort, because I hate feeling weak enough to need to pray.
In one of my weaker moments, when the decision to quit teaching seemed less, Yes, this is clearly the path I must take and more,What the hell have I just done?!, when I was frantic about losing my adulthood identity and feeling all sorts of pressure to do what everyone else wanted me to do, I opened up my prayer journal and poured my heart out to God.
I felt like quitting teaching was right. Even though I loved doing it and I think I was pretty good at it (read: bossy), I felt like it was time to move on. But move on to…what? We didn’t have a family that I could focus on like our other 30-something-year-old friends did. (We cannot have children of our own—I’ve written many an angry prayer to God about that one.) I couldn’t (and still can’t) drive myself anywhere. So my prospects seemed rather dim. And yet…quitting just felt right. Confusing, but right.
Like going through a door.
So, in my desperation, I just…wrote. I wrote, and I wrote, and I wrote—I wrote four pages that night, all of them full of confused, desperate, jumbled words. I didn’t even really know what I was praying for, to be honest. It was as if my very soul were praying. (My mind had nothing to do with it, save the task of controlling my pen.) The words just fell out of me. I asked for an outlet for my bossy love. I asked for true connection. And I asked for love reciprocated.
And I reread those this week, and I was shocked and amazed, because that confused, desperate, jumbled prayer had been answered, because I became a foster mom mere days after I prayed those words.
True connection. Love reciprocated. An outlet for my bossy love.
And I got all three.
God is good.