The Road Taken

Master of the Osservanza Triptych - St. Anthony Abbot Tempted by a Heap of Gold

I've written before about drugs, about new drugs in particular, about the drugs that are supposed to stop the seizures. I've said that after eighteen trials of drugs, I wouldn't give Sophie another unless Jesus Himself offered one to me.

Sigh.

We've given Sophie yet another drug. When I open my eyes each morning, I steel myself for the morning bouts of seizures, and they really ARE bouts. I have to literally protect myself from her flying limbs and protect those flying limbs from hitting furniture. Sometimes I have to lie across her to prevent her from throwing herself off of the bed. Do these seizures hurt? I hope not but can't be sure. I do know that when they subside, sometimes after forty-five minutes, we are both exhausted and I'm usually in tears. And this is partly because I've done a fine job of cursing the universe, yelling at God, berating myself for the yelling and otherwise acting like a desperate woman on the edge. I look at my daughter, her brown eyes like pools and I stroke her cheek and whisper that I'm sorry, I'm sorry, this must be better.

This one is called Clobazam and it's a benzodiazepine. For those of you who don't know your drugs, benzos are drugs like Valium, formulated to sedate, calm down, make comatose. The tricky thing about them is that one builds up a tolerance and then one must increase the dose and then increase again and then before you know it, seizures are coming through, breaking through and the side effects are taking over and  then one must wean the drug from the body. And as anyone knows who has given antiepileptic medications unsuccessfully to one's child, the wean is sometimes worse than the seizures themselves.

I remember long ago thinking this is my choice? when faced with the decision of which drug to try next for my baby Sophie. One drug could cause aplastic anemia and the other vision loss. There were the side effects of a suppressed immune system and terrible thrush or regression in development. These were our choices?, I'd laugh, darkly to my husband in the dead of night.

Roll forward almost fifteen years.

Jesus didn't give me Clobazam.  I actually got the prescription from The Neurologist about six months ago, who faxed it to the drugstore in New York City on the Upper West Side who got it from Canada who then mailed it to me. Throw in there, too, the transaction itself, the transfer of monies through credit cards because the insurance company doesn't cover it because it's not FDA-approved because it's probably not worthwhile economically for the FDA to approve it because there are other FDA-approved benzos but they don't work, so never mind (and any of you laggards out there who think that 1. medical decisions are being made between you and your doctor and 2. the USA has the best healthcare system in the world and 3. you fought against reform like a good Republican should or are settling for the measly compromises that are being crafted, well, wake up because this is how many of your fellow citizens with children with chronic diseases have to live). And when I received it in the mail, the little innocuous white box of one hundred pills, each pill a startling white in an indented plastic container with a bit of foil on the top, I put it, promptly, into my medicine cabinet in my bathroom, far away from the girl.

I was waiting for a sign, I suppose, and didn't mean to cave. Because that's how I look on it, actually, trying a drug that Jesus, Himself, didn't offer me. There was no sign, really, only a cry of enough! that came out of me one morning, and it's a very dark cave that I crawl into when we try these things, a cave that beckons me, separate from my instinct, all my bones and thinking brain and aching heart but nothing else of me. I crawl down that dark passageway each time I take the white pill and split it in half along the indented line, toss it into the back of her mouth and quickly give her the cup of juice to wash it down.

I never, never get used to it.