"Do you love me?" I ask from the far side of the butcher block, a question to which I know the answer, but which I ask periodically, just to be humored.
"Yes. More than anything in the world," he replies, as he looks at me with intent.
A bit incredulously, I follow with, "Even Calvin?"
"Yes," my husband answers, "but he's catching up."
The expression I give lets him know I wonder what he means.
"He's becoming more lovable," he says.
"Like when he was a baby," I add, "when he was feeling good ... he was all happy and lovable. It's the drugs that have fucked him up."
After a pause, I go on to say:
"Some doctors are assholes," thinking about the bad ones—the one who needlessly prescribed Calvin's first benzodiazepine and the ones who prescribed extremely high doses of too many drugs—sometimes several at once—that didn't work and that fucked him up, caused him to be and remain so impossibly restless.
Michael nods his head.
"I wish we could go back in time." I say, wishing I knew—and could have employed—then what I know now.
"Yes. More than anything in the world," he replies, as he looks at me with intent.
A bit incredulously, I follow with, "Even Calvin?"
"Yes," my husband answers, "but he's catching up."
The expression I give lets him know I wonder what he means.
"He's becoming more lovable," he says.
"Like when he was a baby," I add, "when he was feeling good ... he was all happy and lovable. It's the drugs that have fucked him up."
After a pause, I go on to say:
"Some doctors are assholes," thinking about the bad ones—the one who needlessly prescribed Calvin's first benzodiazepine and the ones who prescribed extremely high doses of too many drugs—sometimes several at once—that didn't work and that fucked him up, caused him to be and remain so impossibly restless.
Michael nods his head.
"I wish we could go back in time." I say, wishing I knew—and could have employed—then what I know now.
But I can only go there in my memories and dreams.
 |
| One-year-old Calvin, March, 2005 |
Always love reading about you and Calvin. Hearing the caregiver perspective with epilepsy slays me.
ReplyDeleteYour second line/paragraph made me bawl.
The doctors are so wonton in their perscribing. Almost think it should be a requirement for them to try every drug they administer the same way law enforcement are often required to experience being tasered and pepper sprayed before they're allowed to carry them.
There but by the grace of God go i. Didn't start having seizures until well beyond the time I was able to understand what was going on. Often thinking about Calvin and other young or cognitively impaired people with epilepsy and those drugs. They are SO powerful and the range of side effects is wild. I just can't imagine going through all that without having an idea what was going on. Oof.
I'm riding the God-forsaken benzocoaster right now. Doctors have no clue. They'd *never* be so cavalier about putting *anyone* on a regular regimine of those things, especially people with seizures. It sounds like an abysmal idea to me- hey let's get them habituated to one of the only medications that works in an emergency. Not to mention, who doesn't love protracted seizures withdrawing off that stuff? The worst seizures i've had have been tapering off of benzos.
Given all that, I have a sister that takes care of me a lot and praise the Lord on the regular the tables aren't turned. I can't imagine dealing with it from that vantage. (Should be a better person and wish to take her place, but forget *that*!) Love from Idaho
dear Ajax, thank you so much for your thoughtful reply. you are tapering off benzos? if so, I hope it goes well and that you are going uber slowly. fyi, xcopri seems to be working well for Calvin, at least so far. he has been on it for a year. it is the first new drug we have tried for years (not counting epidiolex since it is cannabidiol.) that said, one of its mechanisms of action affects GABA in some way, but there are folks who have been on it for years seizure free without habituation, so I hope it can do the same for Calvin. thank you so much for your kindness and your perspective! xoxo, christy
DeleteThose cheeks. Praise lovability.
ReplyDelete