Thinking about health

January 27, 2015

When I posted my Top 10 Influential Books a few weeks ago, a book I heavily considered putting on the list, but ultimately got bumped down to slot 11, was Incarceron (well, Incarceron and Sapphique, which I guess are two books, even though my mind usually merges them into one) by Catherine Fisher (have you noticed that she’s my favorite author?).

There are lots of things to love about that series (the soul-devastating ships are a big one), but the thing that has really stuck out in my mind, especially over the last year, are Finn’s seizures.

(NOTE: Major spoilers for the Incarceron series below!)

If you’ve read the books, you may remember that Finn has some kind of Mystery Seizure Disorder that he associates with his damaged memories and the fact that he doesn’t know his real identity. A sort of running mystery throughout the books is whether Finn is or is not the missing Prince Giles.

In Sapphique (and I might be remembering the exact details wrong, it’s been a few years), Finn gets his memories as Giles back, and, now knowing his identity, believes that that’s the end of his problems. He knows who he is now, so no more seizures.

Then he has another seizure.

This gives Finn a crippling sense of doubt—I thought I was Giles, but the seizures didn’t stop, so maybe I’m not? When I read the books for the first time, this is what I had to say about that:

I hate to break this to him, but the real world doesn’t work that way. Obviously, whatever drug they gave him to erase his memories had the side effect of giving him seizures. It’s like if you had a head injury that caused both memory loss and nerve damage—even if you manage to recover all or part of your memories, the act of regaining your memory is not going to make the nerve damage go away. They may have been caused by the same thing, but they’re not mutually exclusive. They’re separate problems now, needing separate treatment, and even if one gets cured, the other may be incurable.

That sounds awfully harsh, doesn’t it? Well, maybe it was karma biting me in the butt, since I wound up living that exact same lesson myself, two years after reading the books.

Today I went in to the doctor for a post-surgery follow-up. Last month, I had a brain tumor removed. The tumor was small and it wasn’t cancerous. It might never have been discovered at all if I hadn’t gone in for testing thanks to a number of severe, non-epileptic seizures.

Some of the doctors think they (the seizures and the tumor) were related. Some of them think they were incidental. My case was bizarre, and none of the specialists I’ve seen over the last year had ever seen anything like it. The result of that is that there aren’t any straightforward answers.

I had to try to explain this to my dad today, and he was very dissatisfied with that. “Can’t they tell you whether or not you’re cured? What do you mean, you have to stay on the medication awhile longer—didn’t the surgery fix the problem? Don’t they know? Why don’t they know?”

Being told that something isn’t as cut-and-dry as, “Hey, you know you’re Giles, so now you’re better,” is not the answer people want to hear. People want everything to have a solution. But when you’re dealing with something as complicated as the human body, with so many interconnected parts tangled up together, and no instruction manual handed down from the Makerbot, oftentimes there is no concrete answer. There’s just guesses. And sometimes guesses are wrong.

Since my surgery, there’s been a marked improvement in my symptoms, but they haven’t disappeared entirely. Cutting off that tumor wasn’t the wonder cure. Maybe it was the first step I needed to heal, and my body will get better in time. Maybe it won’t. There’s no way to know.

For now, I’m content with the fact that I’ve been feeling a lot better since my surgery. No, I’m not 100% off my medication, and I might not ever be able to completely stop taking it. I’m okay with that. I might have to live with having minor seizures every now and then. I’m okay with that, too. After living with this for over a year, I’m happy with the strides my body has made. I went from having at least one violent, long-lasting seizure every single day, to only having them occasionally after I started on my medication, to having just one (mild and short!) in the six weeks since I’ve been out of the hospital.

I want to be optimistic and hope that—as I recover not only from the surgery, but from the damage the tumor did to my bodily processes for however many months or years it was there before detection—I will get better and better, until the seizures are just a memory of the past. But if they never go away, I’ll be fine with that. They’ve become a part of my life, and I’ve learned to work around them. That’s all anyone can do.

So whenever I find myself wondering why don’t we know the answer, I’ll think back to Finn. Maybe we’ll never know for absolute certain whether he actually is Giles (IMO, he totally is), but that doesn’t matter. What’s important is taking the answers we do have, and making the most of them.

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