CDE: "Jesus, why are you so snappy today? You're like 'hisssss, grrrrr.'"
S.: "What's today?"
CDE:"Oh, yeah. I keep forgetting."
S: "So yeah, that."
(Curtain.)
Tuesday, May 26, 2009
Seizure (word) salad.
Thank you for the words of support and concern for S. For those of you who follow her blog (much easier, since she updates with orders of magnitude more regularly than I), I know she's thinking about how to write about it, and she appreciates it.
As near as we can tell, she's fine. She was fine all weekend, she's fine today, and even though her doctor hasn't cleared her to drive yet (sort of hard when the soonest he can see her is tomorrow grrr fuck argh), she went ahead and kept her appointments today. But it got me thinking.
We're both on meds. We were both on meds before we lost the boys. Her for depression, me for anxiety (we complement each other in that regard). Hers got ramped up after we lost the boys and it was clear that she was experiencing severe depression. Lots and lots of pills. And I reaped the benefits, since she had bottles of stuff she could no longer take on her new regimen (hello, Ativan - so nice to see you). And after some fiddling (Abilify = 8 double espressos, all the time), she stabilized and was doing well again. Until the seizure, which whoops, side effect of Wellbutrin. It was just to get her over a hump that she's mostly over already, so no worries. She's doing fine so far without it.
But I'd been thinking about reevaluating my own medication. I'm not anxious (in fact, I'm surprised at how coolly I handled her seizure - half of my brain was saying "oh fuck my wife why is my wife seizing oh holy fuck", and the other half was saying "check her fingernails - okay, she's not cyanotic, eyes are dilated, but not to different degrees, they aren't pointing in different directions either, no asymmetry so it's probably not stroke..."), but I am depressed. And like I've said, I'm feeling it. Anhedonia. Lack of energy. Lack of motivation. So we were talking about me seeing a psychiatrist to see if I should take anything with an energizing effect as well.
You know, like the stuff that gave S. dyskinesia and seizures. So, like, hold on one fucking minute.
Is this the trade-off, then? I am a big fan of better living through chemistry (spent a decent chunk of college, ahem, self-medicating for my anxiety), but is this the price to pay? Shit, two of my favorite vices are alcohol and video games, neither one of which mix well with seizures. Is this the price, then? Trade the things I enjoy for things that allow me to enjoy more the things I can no longer enjoy? Fuck that.
Yes, I know, different people, different medications, different neurochemistry, yadda yadda yadda. It just all continues to be too fucking complicated by half. A year-plus out, and we're still feelings the collateral damage. Not just emotionally, but physically. Medically.
As near as we can tell, she's fine. She was fine all weekend, she's fine today, and even though her doctor hasn't cleared her to drive yet (sort of hard when the soonest he can see her is tomorrow grrr fuck argh), she went ahead and kept her appointments today. But it got me thinking.
We're both on meds. We were both on meds before we lost the boys. Her for depression, me for anxiety (we complement each other in that regard). Hers got ramped up after we lost the boys and it was clear that she was experiencing severe depression. Lots and lots of pills. And I reaped the benefits, since she had bottles of stuff she could no longer take on her new regimen (hello, Ativan - so nice to see you). And after some fiddling (Abilify = 8 double espressos, all the time), she stabilized and was doing well again. Until the seizure, which whoops, side effect of Wellbutrin. It was just to get her over a hump that she's mostly over already, so no worries. She's doing fine so far without it.
But I'd been thinking about reevaluating my own medication. I'm not anxious (in fact, I'm surprised at how coolly I handled her seizure - half of my brain was saying "oh fuck my wife why is my wife seizing oh holy fuck", and the other half was saying "check her fingernails - okay, she's not cyanotic, eyes are dilated, but not to different degrees, they aren't pointing in different directions either, no asymmetry so it's probably not stroke..."), but I am depressed. And like I've said, I'm feeling it. Anhedonia. Lack of energy. Lack of motivation. So we were talking about me seeing a psychiatrist to see if I should take anything with an energizing effect as well.
You know, like the stuff that gave S. dyskinesia and seizures. So, like, hold on one fucking minute.
Is this the trade-off, then? I am a big fan of better living through chemistry (spent a decent chunk of college, ahem, self-medicating for my anxiety), but is this the price to pay? Shit, two of my favorite vices are alcohol and video games, neither one of which mix well with seizures. Is this the price, then? Trade the things I enjoy for things that allow me to enjoy more the things I can no longer enjoy? Fuck that.
Yes, I know, different people, different medications, different neurochemistry, yadda yadda yadda. It just all continues to be too fucking complicated by half. A year-plus out, and we're still feelings the collateral damage. Not just emotionally, but physically. Medically.
Monday, May 25, 2009
If it isn't one thing, it's another.
Things have been going pretty well for us lately. Like I said, S. is doing much better, and we were looking forward to a nice, quiet Memorial Day weekend. I got some work done at school on Wednesday and Thursday, didn't make it in on Friday because S. and I had a much-needed air-clearing talk about me and my feelings and her and her feelings and our relationship. One of the things I love about our relationship is that we rarely full-on fight - we're usually pretty good about arguing about one thing and one thing only, though the loss of the boys has tested that considerably. So anyway, long weekend coming up, chance to relax, all is more or less well...
...and then Friday night, S. has a seizure.
I don't know when it started, I was dozing off on the loveseat in front of an episode of "Mythbusters" when an odd noise woke me up. It sounded like S. was hurt, like when one of the cats gets stuck and digs their claws in, but there were no cats near her, and her arms were drawn up close to her chest, her legs straight out in front of her, head to the side and her eyes closed. I knew this wasn't good - all the color had drained from her face, and her pupils were almost completely dilated. She didn't register anything I was saying or even that I was in front of her. As soon as it started, it stopped, and she fell immediately into a deep sleep. When she finally came to, she had no idea of what had just happened, wasn't sure of the year, and when I told her she'd had a seizure, it took 5 or 6 times of me saying it for it to sink in. Once it did, she got really upset and afraid. I told her we had to go to the hospital and she didn't want to go - it took a lot of insisting to get her off the couch and into the car. The whole time she just kept saying "make it stop, make it stop..."
I knew how she felt. No more hospitals. No more doubt, no more wondering what the tests are going to reveal. No more lives in the balance. We've had enough of that for a lifetime. No more crises, no more emergencies. When do we get to just take a fucking rest?
Long story short, there was no sign of stroke, her head and chest scans and x-rays were clear, so no masses or aneurysms or anything. Consensus is that her dose of Wellbutrin lowered her seizure threshold (apparently an established side effect for her dose range) and what were just myclonic jerks turned into a full-on tonic-clonic seizure. Prescription? Stop taking the Wellbutrin. Simple enough. We finally got home around 4am on Saturday and did a lot of sleeping.
Make it stop. No more emergencies. No more of me walking from the hospital back to our house to take care of the animals at 3am (and take my own meds while I'm at it), wondering what the scans are going to reveal - is it going to be a mass? Will it be malignant? Are our days numbered even shorter than all days always are? Am I going to be rattling around our place by myself, alone here, surrounded by the accumulation of our life together? Am I, in the end, going to lose my wife and my sons to whatever this is?
No, no I'm not. Not this time, at least. But haven't we earned some karmic right to a little peace and quiet? Haven't we earned the right to no more emergencies for a little while? Just that? Just some room to breathe and be?
...and then Friday night, S. has a seizure.
I don't know when it started, I was dozing off on the loveseat in front of an episode of "Mythbusters" when an odd noise woke me up. It sounded like S. was hurt, like when one of the cats gets stuck and digs their claws in, but there were no cats near her, and her arms were drawn up close to her chest, her legs straight out in front of her, head to the side and her eyes closed. I knew this wasn't good - all the color had drained from her face, and her pupils were almost completely dilated. She didn't register anything I was saying or even that I was in front of her. As soon as it started, it stopped, and she fell immediately into a deep sleep. When she finally came to, she had no idea of what had just happened, wasn't sure of the year, and when I told her she'd had a seizure, it took 5 or 6 times of me saying it for it to sink in. Once it did, she got really upset and afraid. I told her we had to go to the hospital and she didn't want to go - it took a lot of insisting to get her off the couch and into the car. The whole time she just kept saying "make it stop, make it stop..."
I knew how she felt. No more hospitals. No more doubt, no more wondering what the tests are going to reveal. No more lives in the balance. We've had enough of that for a lifetime. No more crises, no more emergencies. When do we get to just take a fucking rest?
Long story short, there was no sign of stroke, her head and chest scans and x-rays were clear, so no masses or aneurysms or anything. Consensus is that her dose of Wellbutrin lowered her seizure threshold (apparently an established side effect for her dose range) and what were just myclonic jerks turned into a full-on tonic-clonic seizure. Prescription? Stop taking the Wellbutrin. Simple enough. We finally got home around 4am on Saturday and did a lot of sleeping.
Make it stop. No more emergencies. No more of me walking from the hospital back to our house to take care of the animals at 3am (and take my own meds while I'm at it), wondering what the scans are going to reveal - is it going to be a mass? Will it be malignant? Are our days numbered even shorter than all days always are? Am I going to be rattling around our place by myself, alone here, surrounded by the accumulation of our life together? Am I, in the end, going to lose my wife and my sons to whatever this is?
No, no I'm not. Not this time, at least. But haven't we earned some karmic right to a little peace and quiet? Haven't we earned the right to no more emergencies for a little while? Just that? Just some room to breathe and be?
Monday, May 18, 2009
Seven minutes' hate.
Lately, I've been thinking a lot about rage.
I've finished my first year as an honest-to-goodness professor, and S. is doing a lot better. Not perfect by any means, but better. Between effective meds, our wonderful new dog, and some much-needed validation and vindication, she's much much closer to the woman she was before we lost our sons. I'm spending a lot less time and energy taking care of her as a result. Don't need to worry about her as much, or drag her out of bed, or wonder if today's the day I'm going to find her body.
So it's summer, and I've got room to move, room to breathe, room to think.
And I'm thinking about rage. About anger.
Anymore, I cannot stand depictions of motherhood in the media. At all. I talk back to the TV, and say cruel, hurtful things about Kate Gosselin, about the proliferation of large-family or parent-of-multiple shows. I'm sick of children, sick of people talking about their children, sick of pregnancy, sick of all of it. I have so much anger and frustration inside of me at having this wonderful thing withheld. I have so much in my life. I have so much. I have a wonderful wife and a healthy marriage. I have, for the first time in my life, however delayed, a career. I go to work and do what I love. But I don't have children, and may never have children. And I can study it, intellectualize it, I can examine it and talk about it in therapy, but at the end of the day is the truth of it. The hate that comes out of my mouth and out of my heart for the blithe simplicity of pregnancy. The smug assurance that it's "all worth it." The assumption that all it takes to have kids is to want kids. The privilege of it, the entitlement of it. It offends a sense of justice that by all rights I shouldn't still have. I have so little tolerance for it, for parenthood as a replacement for adult identity. For parenthood as a replacement for all other achievement. For the very real possibility that I will never, ever have children and the blank stares and hollow platitudes offered to me.
I am just now at a point in my life where I have space to take care of me, to think of me and my own needs. I have voices to listen to besides those of my wife. I have my own voices to listen to.
And they are all screaming with rage and hate for what was not meant to be.
I've finished my first year as an honest-to-goodness professor, and S. is doing a lot better. Not perfect by any means, but better. Between effective meds, our wonderful new dog, and some much-needed validation and vindication, she's much much closer to the woman she was before we lost our sons. I'm spending a lot less time and energy taking care of her as a result. Don't need to worry about her as much, or drag her out of bed, or wonder if today's the day I'm going to find her body.
So it's summer, and I've got room to move, room to breathe, room to think.
And I'm thinking about rage. About anger.
Anymore, I cannot stand depictions of motherhood in the media. At all. I talk back to the TV, and say cruel, hurtful things about Kate Gosselin, about the proliferation of large-family or parent-of-multiple shows. I'm sick of children, sick of people talking about their children, sick of pregnancy, sick of all of it. I have so much anger and frustration inside of me at having this wonderful thing withheld. I have so much in my life. I have so much. I have a wonderful wife and a healthy marriage. I have, for the first time in my life, however delayed, a career. I go to work and do what I love. But I don't have children, and may never have children. And I can study it, intellectualize it, I can examine it and talk about it in therapy, but at the end of the day is the truth of it. The hate that comes out of my mouth and out of my heart for the blithe simplicity of pregnancy. The smug assurance that it's "all worth it." The assumption that all it takes to have kids is to want kids. The privilege of it, the entitlement of it. It offends a sense of justice that by all rights I shouldn't still have. I have so little tolerance for it, for parenthood as a replacement for adult identity. For parenthood as a replacement for all other achievement. For the very real possibility that I will never, ever have children and the blank stares and hollow platitudes offered to me.
I am just now at a point in my life where I have space to take care of me, to think of me and my own needs. I have voices to listen to besides those of my wife. I have my own voices to listen to.
And they are all screaming with rage and hate for what was not meant to be.
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