Sunday, January 8, 2012
FOR SHAME
I do this more for my own inventory keeping than promotion, but . . . some poems/interviews came out during my blogging lag.
"Mercury" in FORKLIFT, OHIO.
"Soft-Care" and "Butterfly" in SIXTH FINCH.
"Unbelieve" and "Together" in UNSWEPT. These are English-to-English translations of "Unbelieve" by Peter Jay Shippy and When You're Not Allowed to Daydream by Rachel Simon, respectively.
An interview with Brandi Homan and Becca Klaver about their respective books BOBCAT COUNTRY and L.A. LIMINAL and an interview with Joseph P. Wood about his book I & WE in BOOKSLUT.
I'm going to try to be better about submitting this year. That's another New Year's goal. I submitted poems to approximately 0 places last year, so anything will be an improvement.
Tuesday, January 3, 2012
NEW YEAR'S RESOLUTIONS
You know you made them too.
1. Do one thing at a time and focus just on that thing while I’m doing it. This is nearly impossible for me to do. IMPOSSIBLE. I cannot seem to fix this, despite my best intentions and wishes. I’m SO distractible that the majority of the time, I don’t even realize I’m distracted/getting distracted because by the time I start thinking about how distracted I am and how this character flaw ruins my life, something else has caught my eye, and I’m thinking about/doing that.
2. Do things in the order of priority. Why? This will make me feel like a good person and will free me from worry and chronic anxiety, so that I can enjoy the stuff I enjoy when I get to it, instead of doing the stuff I enjoy first, all the time fighting off dread and fear of oncoming disaster/upcoming failure/mediocrity.
ORDER OF PRIORITIES DETOUR
Good Order of Priorities
Here is the order of priorities, as the good and right person in me sees it:
1. Things at work, things that are required for me to get a paycheck
2. Things I absolutely PROMISED other people I would do
3. Things that help my family in big ways/things are necessary for our collective health/happiness
4. Writing, in the following order
a. Revising my poetry manuscript and dividing it in two
b. Finishing my good novel
c. Revising my bad novel
d. Writing new poems
e. Writing my almost entirely unwritten book of essays
f. Finishing my translations
5. Other things to make myself feel good, e.g., surfing the web, looking at design sites, browsing stores for stuff I NEVER buy, and reading random articles blogs, emailing friends, writing blog entries, not in that order
6. Things that I didn’t technically promise other people I would do but would like to do, just because I really like those people.
*The list of priorities that the good me made might not make a lot of sense to other good people. But that’s the way I feel about it.
Current Order of Priorities
Here is the current order in which most things in my life happen the majority of the time:
1. Things at work, things that are required for me to get a paycheck
5. Other things to make myself feel good, e.g., surfing the web, looking at design sites, browsing stores for stuff I NEVER buy, reading random articles and blogs, emailing friends, daydreaming, writing blog entries, not in that order
4. Writing, in this order
d. Writing new poems
a. Revising my poetry manuscript and dividing it in two
b. Finishing my good novel
e. Writing my almost entirely unwritten book of essays
c. Revising my bad novel
f. Finishing my translations
6. Things that I didn’t promise other people I would do but would like to do, just because I really like those people.
3. Things that help my family in big ways/things are necessary for health/happiness
2. Things I promised other people I would do
The writing part isn’t too out of order. But family commitments come in just before “things I promised other people I would do but now dread doing because I’m too busy/don’t know how to do them.” Terrible!
Sometimes David watches movies on his computer late late LATE at night while taking these three-hour baths and I see the bathroom light on at 4 in the morning and I think maybe he fell asleep and drowned but I don’t want to knock on the door because if he hasn’t drowned, I’ll be disturbing him during his relaxation time, and if he has drowned, there’s nothing I can do about it anyway, so what’s a few more hours of not knowing? Still, it fills me with searing terror, the image of him floating dead in the bathtub, followed immediately after with images of me getting into bed, over and over and over, every night, at different ages, for the next forty years without him. I do NOT want him to die and have to go on forevermore without him. It’s terrible to think about. Yet, I also do NOT want to call the insurance company to ask them why they didn’t cover X, Y, or Z procedure, even though my husband has asked me nicely a billion times to do it, and I easily could, I just don’t feel like it because it seems boring.
Sometimes in the middle of the night, I wake up and I can’t go back to sleep and my head is racing with revelations about all the ways in which I’ve neglected the people I love, and all these ideas for changes I could make to be a better person, and I want to start writing letters to people and apologizing and telling them my great plans for redemption, but when I finally fall back to sleep, and I get up in the morning, I can’t call up the same intensity of feeling. I just feel like, “Whatever, they probably deserved it.” Or “Who am I, some spiritual leader? I don’t have the energy to change, I just want to write a poem.”
END OF DETOUR
3. Keep a calendar and check it.
4. Don’t promise things that have no big payback and/or I have no idea how to do so I won’t find myself later regretting that I promised to do them and so often blow them off, only to be left with anxiety and shame and regret because I broke my promises, many times to people I really like.
Current things to do, right after I finish writing this blog post.
1. Go back to sleep because I’ve been up since 2.
2. Resolve QA issues and build a Nursing course
3. Write Dolly’s grant and do Leigh’s interview
4. Get a driver’s license for social security application and call disability attorney
5. Write, in the right order
6. Surf the web, write blog entries, daydream, etc.
Things to tell myself to motivate myself to do the less exciting stuff:
1. Everybody does it. You are a person and you must.
2. It never takes that long to do it and you always feel better afterward. Have you ever once regretted getting some less desirable task out of the way first?
3. There’s a good possibility you’ll get caught up doing the less desirable tasks and find yourself enjoying them or at least able to ignore the fact that they’re boring.
4. You will be more successful and produce more artsy things, and disappoint less people. This means people will love you more because people like successful, productive, and reliable people and are less enamored with treading-water, flying-in-circles, and disappearing-into-the-mist gorillas.
I am not off to a great start, having just spent a couple hours doing number 6 on my priority list. On the bright side, this means the New Year can only get better or at least stay the same. Tune in for progress.
Happy New Year!
1. Do one thing at a time and focus just on that thing while I’m doing it. This is nearly impossible for me to do. IMPOSSIBLE. I cannot seem to fix this, despite my best intentions and wishes. I’m SO distractible that the majority of the time, I don’t even realize I’m distracted/getting distracted because by the time I start thinking about how distracted I am and how this character flaw ruins my life, something else has caught my eye, and I’m thinking about/doing that.
2. Do things in the order of priority. Why? This will make me feel like a good person and will free me from worry and chronic anxiety, so that I can enjoy the stuff I enjoy when I get to it, instead of doing the stuff I enjoy first, all the time fighting off dread and fear of oncoming disaster/upcoming failure/mediocrity.
ORDER OF PRIORITIES DETOUR
Good Order of Priorities
Here is the order of priorities, as the good and right person in me sees it:
1. Things at work, things that are required for me to get a paycheck
2. Things I absolutely PROMISED other people I would do
3. Things that help my family in big ways/things are necessary for our collective health/happiness
4. Writing, in the following order
a. Revising my poetry manuscript and dividing it in two
b. Finishing my good novel
c. Revising my bad novel
d. Writing new poems
e. Writing my almost entirely unwritten book of essays
f. Finishing my translations
5. Other things to make myself feel good, e.g., surfing the web, looking at design sites, browsing stores for stuff I NEVER buy, and reading random articles blogs, emailing friends, writing blog entries, not in that order
6. Things that I didn’t technically promise other people I would do but would like to do, just because I really like those people.
*The list of priorities that the good me made might not make a lot of sense to other good people. But that’s the way I feel about it.
Current Order of Priorities
Here is the current order in which most things in my life happen the majority of the time:
1. Things at work, things that are required for me to get a paycheck
5. Other things to make myself feel good, e.g., surfing the web, looking at design sites, browsing stores for stuff I NEVER buy, reading random articles and blogs, emailing friends, daydreaming, writing blog entries, not in that order
4. Writing, in this order
d. Writing new poems
a. Revising my poetry manuscript and dividing it in two
b. Finishing my good novel
e. Writing my almost entirely unwritten book of essays
c. Revising my bad novel
f. Finishing my translations
6. Things that I didn’t promise other people I would do but would like to do, just because I really like those people.
3. Things that help my family in big ways/things are necessary for health/happiness
2. Things I promised other people I would do
The writing part isn’t too out of order. But family commitments come in just before “things I promised other people I would do but now dread doing because I’m too busy/don’t know how to do them.” Terrible!
Sometimes David watches movies on his computer late late LATE at night while taking these three-hour baths and I see the bathroom light on at 4 in the morning and I think maybe he fell asleep and drowned but I don’t want to knock on the door because if he hasn’t drowned, I’ll be disturbing him during his relaxation time, and if he has drowned, there’s nothing I can do about it anyway, so what’s a few more hours of not knowing? Still, it fills me with searing terror, the image of him floating dead in the bathtub, followed immediately after with images of me getting into bed, over and over and over, every night, at different ages, for the next forty years without him. I do NOT want him to die and have to go on forevermore without him. It’s terrible to think about. Yet, I also do NOT want to call the insurance company to ask them why they didn’t cover X, Y, or Z procedure, even though my husband has asked me nicely a billion times to do it, and I easily could, I just don’t feel like it because it seems boring.
Sometimes in the middle of the night, I wake up and I can’t go back to sleep and my head is racing with revelations about all the ways in which I’ve neglected the people I love, and all these ideas for changes I could make to be a better person, and I want to start writing letters to people and apologizing and telling them my great plans for redemption, but when I finally fall back to sleep, and I get up in the morning, I can’t call up the same intensity of feeling. I just feel like, “Whatever, they probably deserved it.” Or “Who am I, some spiritual leader? I don’t have the energy to change, I just want to write a poem.”
END OF DETOUR
3. Keep a calendar and check it.
4. Don’t promise things that have no big payback and/or I have no idea how to do so I won’t find myself later regretting that I promised to do them and so often blow them off, only to be left with anxiety and shame and regret because I broke my promises, many times to people I really like.
Current things to do, right after I finish writing this blog post.
1. Go back to sleep because I’ve been up since 2.
2. Resolve QA issues and build a Nursing course
3. Write Dolly’s grant and do Leigh’s interview
4. Get a driver’s license for social security application and call disability attorney
5. Write, in the right order
6. Surf the web, write blog entries, daydream, etc.
Things to tell myself to motivate myself to do the less exciting stuff:
1. Everybody does it. You are a person and you must.
2. It never takes that long to do it and you always feel better afterward. Have you ever once regretted getting some less desirable task out of the way first?
3. There’s a good possibility you’ll get caught up doing the less desirable tasks and find yourself enjoying them or at least able to ignore the fact that they’re boring.
4. You will be more successful and produce more artsy things, and disappoint less people. This means people will love you more because people like successful, productive, and reliable people and are less enamored with treading-water, flying-in-circles, and disappearing-into-the-mist gorillas.
I am not off to a great start, having just spent a couple hours doing number 6 on my priority list. On the bright side, this means the New Year can only get better or at least stay the same. Tune in for progress.
Happy New Year!
Monday, July 25, 2011
THE SWIMSUIT ISSUE
Summer's my favorite season. I've been waiting for the Summer Feeling and waiting and waiting and it's just not coming. I need to get to the bottom of this. I don't know why Summer will not emotionally come.
I keep thinking if I get a better bathing suit, I might suddenly be overwhelmed with feelings of Summerness.
The problem with getting a bathing suit is bikinis are very popular, and I don't like bikinis. Probably because I don't exercise with the thought in mind, "This exercise I am doing right now is a means to an end. I am going to look so hot this summer in my bathing suit." In fact, I don't exercise ever, almost, at all.
As I've told my friends, thank god I'm just as lazy about eating as I am about exercise. It would be very bad if I were extremely ambitious in one area and not the other. Food is not my drug, thankfully. I like fudge as much as the next guy but mostly I feel about food the way I feel about gambling. I'm not that excited to do it, and when I do it, I'm not that excited. I can understand the appeal; it's just not the lever I would keep pressing until I died. I have other levers. Not judging, certainly.
I feel like wearing a bikini, having not exercised, is like showing up at class without doing your homework. You can do it. If you're not morbidly stupid, most people won't notice. Nothing awful is going to happen. But you'll be sitting there all self-conscious the entire time like, "Why didn't I just do my homework this winter? I bet everybody can tell I didn't do it. Can they? Of course they can, if they care about homework. Crap. I just wish I had done it now--even if it seemed boring and useless."
But non-bikinis seem to call even MORE attention to the fact that you haven't exercised. Because (at least if you're on a beach in Chicago--we go to Oak Street or North Ave.) NOBODY wears one-pieces. Like nobody. Maybe one person out of a 100. If you are wearing one, you are signaling: Something very extreme has happened to me and my body.
Tone-issues and fashion trends aside, I like one-pieces better. They're just so much cuter. You have more material to work with. There's not so much you can do with a two-inch triangle and strings.
I have been looking at suits for the past couple of days and Zazi is getting madder and madder saying, "Why are you looking at bathing suits on the Internet! I HATE when you look at bathing suits on the Internet!" I am done looking at bathing suits on the Internet. I swear. Here are some favorites. Would I wear these? Probably not.
Suspended Bather.
Sakura
Blue Barmaid
Yellow Blackstrap
Aloha Green Triangle
Black Honeycomb
Striped Barbie
Knotback Maillot
In the 70s, my mother used to have a bathing suit just like this one. She must have bought it when she was an especially confident mood.
White Keyhole
I would beg her--BEG her--to wear it. Sometimes to make me happy she'd put it on for three minutes and sit in the backyard, looking pained and mortified. She felt about bikinis the way I feel. But was always so tan and skinny. That white keyhole was so her. She just didn't know it! There was no convincing her.
Thinking about summer and the 70s made me think about summer songs. I think maybe if I come up with some summer songs for 2011, I'll feel more summery.
Can you help me with this? Recommend summer songs?
Here is my top summer song for each decade 70s-00.
THE 1970s
Elton John’s “Philadelphia Freedom.” This song reminds me of sitting on my bike, watching my dad wash the car and grumble about stuff.
THE 1980s
This reminds me of sitting in the quad at Ball State. It also reminds me of walking from my house on Main Street to the White Hen Pantry and buying Camel Lights and diet Mountain Dew and doughnuts.
The Sundays “Can’t Be Sure”
THE 1990s
This reminds me of sitting in my apartment in Ludlow, Kentucky. My roommate worked at a candy factory so we had reject boxes of Mentos (the European flavors, like Eucalyptus, that Americans hated) stacked against one wall. The couch was one of those two piece numbers, so if you were kissing somebody, it would come apart and you'd fall on the floor.
Galaxie 500 “Tugboat”
THE 00s
My daughter and I dance to this. A lot. Usually in the kitchen. Sometimes our moves take us into the livingroom.
Manu Chao “Clandestino”
I keep thinking if I get a better bathing suit, I might suddenly be overwhelmed with feelings of Summerness.
The problem with getting a bathing suit is bikinis are very popular, and I don't like bikinis. Probably because I don't exercise with the thought in mind, "This exercise I am doing right now is a means to an end. I am going to look so hot this summer in my bathing suit." In fact, I don't exercise ever, almost, at all.
As I've told my friends, thank god I'm just as lazy about eating as I am about exercise. It would be very bad if I were extremely ambitious in one area and not the other. Food is not my drug, thankfully. I like fudge as much as the next guy but mostly I feel about food the way I feel about gambling. I'm not that excited to do it, and when I do it, I'm not that excited. I can understand the appeal; it's just not the lever I would keep pressing until I died. I have other levers. Not judging, certainly.
I feel like wearing a bikini, having not exercised, is like showing up at class without doing your homework. You can do it. If you're not morbidly stupid, most people won't notice. Nothing awful is going to happen. But you'll be sitting there all self-conscious the entire time like, "Why didn't I just do my homework this winter? I bet everybody can tell I didn't do it. Can they? Of course they can, if they care about homework. Crap. I just wish I had done it now--even if it seemed boring and useless."
But non-bikinis seem to call even MORE attention to the fact that you haven't exercised. Because (at least if you're on a beach in Chicago--we go to Oak Street or North Ave.) NOBODY wears one-pieces. Like nobody. Maybe one person out of a 100. If you are wearing one, you are signaling: Something very extreme has happened to me and my body.
Tone-issues and fashion trends aside, I like one-pieces better. They're just so much cuter. You have more material to work with. There's not so much you can do with a two-inch triangle and strings.
I have been looking at suits for the past couple of days and Zazi is getting madder and madder saying, "Why are you looking at bathing suits on the Internet! I HATE when you look at bathing suits on the Internet!" I am done looking at bathing suits on the Internet. I swear. Here are some favorites. Would I wear these? Probably not.
Suspended Bather.
Sakura
Blue Barmaid
Yellow Blackstrap
Aloha Green Triangle
Black Honeycomb
Striped Barbie
Knotback Maillot
In the 70s, my mother used to have a bathing suit just like this one. She must have bought it when she was an especially confident mood.
White Keyhole
I would beg her--BEG her--to wear it. Sometimes to make me happy she'd put it on for three minutes and sit in the backyard, looking pained and mortified. She felt about bikinis the way I feel. But was always so tan and skinny. That white keyhole was so her. She just didn't know it! There was no convincing her.
Thinking about summer and the 70s made me think about summer songs. I think maybe if I come up with some summer songs for 2011, I'll feel more summery.
Can you help me with this? Recommend summer songs?
Here is my top summer song for each decade 70s-00.
THE 1970s
Elton John’s “Philadelphia Freedom.” This song reminds me of sitting on my bike, watching my dad wash the car and grumble about stuff.
THE 1980s
This reminds me of sitting in the quad at Ball State. It also reminds me of walking from my house on Main Street to the White Hen Pantry and buying Camel Lights and diet Mountain Dew and doughnuts.
The Sundays “Can’t Be Sure”
THE 1990s
This reminds me of sitting in my apartment in Ludlow, Kentucky. My roommate worked at a candy factory so we had reject boxes of Mentos (the European flavors, like Eucalyptus, that Americans hated) stacked against one wall. The couch was one of those two piece numbers, so if you were kissing somebody, it would come apart and you'd fall on the floor.
Galaxie 500 “Tugboat”
THE 00s
My daughter and I dance to this. A lot. Usually in the kitchen. Sometimes our moves take us into the livingroom.
Manu Chao “Clandestino”
Thursday, July 21, 2011
BLIND TO YOUR ADVANCES
I went to the Usability Conference and I learned and saw some fun things.
I learned about inattentional blindness. That's when you can't see what's clearly there because you're focused on another task.
Check out this test:
[I failed it.]
I also learned about change blindness. That's when you can't see what's clearly changed because you're focused on a task.
This video is unbelievable.
One theory behind change blindness is your mind can't perceive a change if the change hasn't had time to be stored--if it hasn't made it from short term to working memory--or if it isn't significant enough.
When I told my friends about this video, my friend Martin offered that maybe your brain just picks and chooses to remember what it needs. Like why should your brain remember if the person is a tall, white, bald dude or a teeny tiny Asian lady--as long as the mouth hole in front of you is spitting out your directions?
They didn't offer this up as a theory at the Usability conference. But I looked it up and CogSci people are starting to think that this might indeed be what's happening. Fun!
I learned about inattentional blindness. That's when you can't see what's clearly there because you're focused on another task.
Check out this test:
[I failed it.]
I also learned about change blindness. That's when you can't see what's clearly changed because you're focused on a task.
This video is unbelievable.
One theory behind change blindness is your mind can't perceive a change if the change hasn't had time to be stored--if it hasn't made it from short term to working memory--or if it isn't significant enough.
When I told my friends about this video, my friend Martin offered that maybe your brain just picks and chooses to remember what it needs. Like why should your brain remember if the person is a tall, white, bald dude or a teeny tiny Asian lady--as long as the mouth hole in front of you is spitting out your directions?
They didn't offer this up as a theory at the Usability conference. But I looked it up and CogSci people are starting to think that this might indeed be what's happening. Fun!
WHY THE HELL WOULD I EVER TELL YOU THAT STORY?
This is kind of gruesome and maybe a depressing post. But for people who are interested in grody medical stuff--I am very much so and always have been--or for people who have kids with the same kind of medical problems as my daughter it might be interesting.
Did I ever circle back around and say my daughter was diagnosed with autism? She was. It wasn't that shocking. I've been saying it since she's been born, "That girl has autism," and all the symptoms were there. She's six, so what might be shocking is that we've never had a diagnosis before. But we didn't. Why would we? Our daughter was already being treated in the same way she would have been if she had had autism anyway--physical, occupational, speech, vision therapy.
Like I said in a previous post, it didn't make any difference to us, the label--or we thought it didn't. To our minds, it was just like, "Okay, doctors, so you tell us she doesn't have "autism." She just has a collection of autistic-like symptoms--lack of eye contact, sensory integration probs, motor probs, seizures, etc.--that derive from physical problems that make her present EXACTLY AS IF SHE HAS AUTISM.
So for instance:
1. Her lack of eye contact came from having a damaged optical nerve, and from having gaze apraxia, which is the inability (without much thought and effort) to direct your gaze on something. The doctor who diagnosed her with gaze apraxia said that he often refers to gaze apraxia as "visual autism" because there's no way for people who have it to visually connect with others b/c their eyes can't land on them for any length of time.
2. Her sensory integration problems came from an IVH (interventricular hemmorhage) when she was born. It happened because the ventricles in her brain were too little and weak so they burst and blood flooded into the grey matter in her brain and blood damages everything it touches. Blood is not a brain's friend. The bleed could have kept going and damaging the whole thing but the bleed resolved itself. Still, once it happens, you can't reverse the damage.
3. The problems with her gait came from PVL (a hardening of the gray matter of the brain, which happens after IVH).. her PVL affected her motor strip in particular.
4. The seizures were from hydrocephalus, which developed after the IVH. Hydrocephalus happened in my daughters's case because her brain drainage system got all clogged up from dried blood and then the spinal fluid couldn't travel up and down, from her brain, down the spinal column and back up.
If this goes on for a long time (without putting in a shunt, a man-made reservoir, a little tube that carries the spinal fluid out of the brain and deposits it into a pocket in the abdomen), the ventricles keep getting bigger and bigger, and the more big they get, the less brain you have to work with, because it's basically just these two giant pockets of fluid taking up all the real estate.
So my daughter has a shunt. It's called a VP shunt, and it's a little square gauge on top of her head. You can feel it under her skin. It feels like she has a little lego piece under there. The gauge is magnetic, so it can be adjusted from the outside. It's sort of a new development, the magnetic part of the shut. With the magnetic gauges, the doctors can put this little square thing on the outside over the gauge and then turn a knob and adjust the shunt--to allow for more flow or less. Pretty great idea. Before, if shunts needed to be adjusted they had to do brain surgery.
The end of the shunt is like a telephone cord, all coiled up. As kids grow, the cord uncoils and uncoils and then if it gets too short, they do a tiny surgery on the stomach and just attach more coiled up cord to it.
The problem with putting shunts in is a lot of the time, they get infected. You have to do the surgery carefully (for obvious reasons), but the longer you leave the brain open, the more susceptible it is to germs, and the more susceptible the shunt is for getting germs on it. When I asked the doctor how they can prevent germs getting in there or on the shunt, he said, it's basically "witch-doctoring." Every brain surgeon has his or her own superstitions and little rituals he or she does based on completely unfounded ideas and opinions. Some keep the shunt covered until they need it, some don't cover it for fear germs will be on the cloth, some keep the room really cold, on and on.
It's interesting when doctors tell you how little they know and how they're just winging it when they're doing stuff like, say, cutting your brain open and putting a foreign object in it. This is the same doctor who told me, "We almost know nothing about the brain. We know there's a hard bone around it and it has ridges. That about wraps it up." He said, "We go in and put in shunts to drain fluid off. And we cut brains in half so seizures stop, though we don't know why that makes them stop. And we cut out masses of cancer. That's about it. That's all we can do, given what we know."
It occurred to me that it's kind of funny. Everybody says, "This isn't brain surgery," but they should probably say, "This isn't heart surgery." Heart surgeons are incredible mechanics. We know a lot about the heart and so there's a lot of very intricate fixing that needs to be done. You don't just cut a portion of it out or cut it in half or stick a straw or plug in it.
Oh, so anyway, the doctor told me, very matter of factly, that my daughter may have to have several shunt revisions. I said, "Like how many?" He said, "Maybe none, maybe a lot." I said, "Like what's a lot? What do you mean a lot? Like twenty?"
"Maybe," he nodded. "Or more."
"What do you mean more, like hundreds or something?"
He shrugged, "Possibly."
I walked away and I said to my husband, "Doctors are so full of SHIT! They always tell you the worst case scenarios but who's had a hundred surgeries? Have you ever ever EVER in your entire life heard of someone having a hundred surgeries?"
Later that day, I talked to my friend Rachel in the NICU parent's lounge. Long story but my husband knew Rachel's husband and their baby just happeend to be in the NICU with ours--her baby and my babies were incubator neighbors--and so Rachel and I got to be really close because we saw each other 24-7 for months and her son had an IVH too.
So anyway, we were talking and I said, "So are you southern or something?" Her accent didn't really sound southern. But she had this accent that was super cute and drawly.
She smiled and was like, "No. I think it's from hanging out with my sister all the time who's deaf."
I was like, "Oh, really. Was she born deaf?"
She was like, "No, my mom had shunts put in her ears so her ears could drain when she was little." [I guess sometimes little kids have trouble with ear infections because their tubes are so little and sometimes the parents get nervous that the kids might not develop speech because they can't ever hear because their ears are always infected, so instead of waiting until the tubes get bigger, they put in shunts.]
And Rachel was like, "But the shunts just kept getting infected and infected and infected, and her body kept rejecting them, and she kept having to have surgeries."
I was like, "Really, like how many?"
"I don't know. Like probably a hundred or more?" Rachel said. "Then she finally went deaf. And now she's in her thirties, but she has brain cancer from getting cancer in her ear and the cancer spreading from her ear to her brain."
I must have looked horrified because Rachel backed up, looking terribly sorry, like, "But that never happens! It's like so SO rare!!!"
I talked to Rachel about this very conversation three years ago, and we were laughing because Rachel was like, "I was so brain dead during that time. Why the HELL would I ever tell you that story? WHY THE HELL WOULD I EVER TELL YOU THAT?" I was like, "I'm kind of glad you did. I thought that neurosurgeon was a lunatic."
BTW, my daughter's only had one shunt revision. Her shunt, the gauge part, about four years ago, shifted because her head was growing. So the doc just realigned it, and while he was in there digging around, he switched it out with a new and improved.
Oh, wait, I thought this was really fascinating. This guy had a shunt, and it malfunctioned but it wasn't like it was a total blockage. It was a slow, slow build up of fluid over time and when they did an MRI or whatever, they found the guy was basically functioning normally but had NO BRAIN LEFT. Like he just had the smallest rim of a a brain. The rest was filled with fluid. But he functioned normally. Had a job. Just under average IQ.
Anyway, so what's my point? Oh, my daughter has autism. We had the diagnosis for insurance and school purposes.
And once she got diagnosed, and we had a name--once we heard the words "Autism" and saw it on paper "Amira Abed, autistic spectrum"--this huge paradigm shift happened. I was really really mad at her for a week after that. Every time she would be doing the annoying stuff that she always does, I'd be thinking, "Stop being so autistic, God! You are SO AUTISTIC, you are driving me insane. I cannot stand living with an AUTISTIC PERSON! Why do have this AUTISTIC child who is so weird and does all this weird stuff and never listens to me or anything I say and won't follow any directions because she does not care about me whatsoever!!! Don't come up to hug me. I could be a wire monkey for all you care. I know this hug is for you, not for me. You know why I know? BECAUSE YOU'RE AUTISTIC AND THAT"S HOW YOU AUTISTIC PEOPLE ARE! Huff!"
My husband and I were like, "Is it just us? Is she acting MORE autistic now that we have this diagnosis? She just seems so much more autistic now."
Of course it IS just us. Language is so powerful. One word can really change the way you think. This is good news. It was bad news for us then, but it's so great to confirm that words can punch people in the brain SO HARD. They work like that. We are in the right field! When I write something, it's possible my writing might do something to someone at some point.
So anyway, my husband and I were super bummed for a week. We weren't even talking. It hit us so much harder than we thought it would. We would just sit in the car, staring straight ahead at nothing. It was just understood. "We are so sad right now. We can't even talk about this shit."
But now it's a relief. Because before, she'd do some weird stuff at a restaurant, and my husband would be like, "Oh, I'm really sorry, she's uh . . . special." And I would look at him, all squinched up like, Don't say... 'special!' I hate when people say 'special!'" But what could you say? There wasn't any neat way to wrap it up. No easy medical term you could rattle off to a waiter. But now there is.
Now we can just be like, "Sorry she just spit on your floor, dude. Autistic. Know what I mean? I think you do."
Did I ever circle back around and say my daughter was diagnosed with autism? She was. It wasn't that shocking. I've been saying it since she's been born, "That girl has autism," and all the symptoms were there. She's six, so what might be shocking is that we've never had a diagnosis before. But we didn't. Why would we? Our daughter was already being treated in the same way she would have been if she had had autism anyway--physical, occupational, speech, vision therapy.
Like I said in a previous post, it didn't make any difference to us, the label--or we thought it didn't. To our minds, it was just like, "Okay, doctors, so you tell us she doesn't have "autism." She just has a collection of autistic-like symptoms--lack of eye contact, sensory integration probs, motor probs, seizures, etc.--that derive from physical problems that make her present EXACTLY AS IF SHE HAS AUTISM.
So for instance:
1. Her lack of eye contact came from having a damaged optical nerve, and from having gaze apraxia, which is the inability (without much thought and effort) to direct your gaze on something. The doctor who diagnosed her with gaze apraxia said that he often refers to gaze apraxia as "visual autism" because there's no way for people who have it to visually connect with others b/c their eyes can't land on them for any length of time.
2. Her sensory integration problems came from an IVH (interventricular hemmorhage) when she was born. It happened because the ventricles in her brain were too little and weak so they burst and blood flooded into the grey matter in her brain and blood damages everything it touches. Blood is not a brain's friend. The bleed could have kept going and damaging the whole thing but the bleed resolved itself. Still, once it happens, you can't reverse the damage.
3. The problems with her gait came from PVL (a hardening of the gray matter of the brain, which happens after IVH).. her PVL affected her motor strip in particular.
4. The seizures were from hydrocephalus, which developed after the IVH. Hydrocephalus happened in my daughters's case because her brain drainage system got all clogged up from dried blood and then the spinal fluid couldn't travel up and down, from her brain, down the spinal column and back up.
If this goes on for a long time (without putting in a shunt, a man-made reservoir, a little tube that carries the spinal fluid out of the brain and deposits it into a pocket in the abdomen), the ventricles keep getting bigger and bigger, and the more big they get, the less brain you have to work with, because it's basically just these two giant pockets of fluid taking up all the real estate.
So my daughter has a shunt. It's called a VP shunt, and it's a little square gauge on top of her head. You can feel it under her skin. It feels like she has a little lego piece under there. The gauge is magnetic, so it can be adjusted from the outside. It's sort of a new development, the magnetic part of the shut. With the magnetic gauges, the doctors can put this little square thing on the outside over the gauge and then turn a knob and adjust the shunt--to allow for more flow or less. Pretty great idea. Before, if shunts needed to be adjusted they had to do brain surgery.
The end of the shunt is like a telephone cord, all coiled up. As kids grow, the cord uncoils and uncoils and then if it gets too short, they do a tiny surgery on the stomach and just attach more coiled up cord to it.
The problem with putting shunts in is a lot of the time, they get infected. You have to do the surgery carefully (for obvious reasons), but the longer you leave the brain open, the more susceptible it is to germs, and the more susceptible the shunt is for getting germs on it. When I asked the doctor how they can prevent germs getting in there or on the shunt, he said, it's basically "witch-doctoring." Every brain surgeon has his or her own superstitions and little rituals he or she does based on completely unfounded ideas and opinions. Some keep the shunt covered until they need it, some don't cover it for fear germs will be on the cloth, some keep the room really cold, on and on.
It's interesting when doctors tell you how little they know and how they're just winging it when they're doing stuff like, say, cutting your brain open and putting a foreign object in it. This is the same doctor who told me, "We almost know nothing about the brain. We know there's a hard bone around it and it has ridges. That about wraps it up." He said, "We go in and put in shunts to drain fluid off. And we cut brains in half so seizures stop, though we don't know why that makes them stop. And we cut out masses of cancer. That's about it. That's all we can do, given what we know."
It occurred to me that it's kind of funny. Everybody says, "This isn't brain surgery," but they should probably say, "This isn't heart surgery." Heart surgeons are incredible mechanics. We know a lot about the heart and so there's a lot of very intricate fixing that needs to be done. You don't just cut a portion of it out or cut it in half or stick a straw or plug in it.
Oh, so anyway, the doctor told me, very matter of factly, that my daughter may have to have several shunt revisions. I said, "Like how many?" He said, "Maybe none, maybe a lot." I said, "Like what's a lot? What do you mean a lot? Like twenty?"
"Maybe," he nodded. "Or more."
"What do you mean more, like hundreds or something?"
He shrugged, "Possibly."
I walked away and I said to my husband, "Doctors are so full of SHIT! They always tell you the worst case scenarios but who's had a hundred surgeries? Have you ever ever EVER in your entire life heard of someone having a hundred surgeries?"
Later that day, I talked to my friend Rachel in the NICU parent's lounge. Long story but my husband knew Rachel's husband and their baby just happeend to be in the NICU with ours--her baby and my babies were incubator neighbors--and so Rachel and I got to be really close because we saw each other 24-7 for months and her son had an IVH too.
So anyway, we were talking and I said, "So are you southern or something?" Her accent didn't really sound southern. But she had this accent that was super cute and drawly.
She smiled and was like, "No. I think it's from hanging out with my sister all the time who's deaf."
I was like, "Oh, really. Was she born deaf?"
She was like, "No, my mom had shunts put in her ears so her ears could drain when she was little." [I guess sometimes little kids have trouble with ear infections because their tubes are so little and sometimes the parents get nervous that the kids might not develop speech because they can't ever hear because their ears are always infected, so instead of waiting until the tubes get bigger, they put in shunts.]
And Rachel was like, "But the shunts just kept getting infected and infected and infected, and her body kept rejecting them, and she kept having to have surgeries."
I was like, "Really, like how many?"
"I don't know. Like probably a hundred or more?" Rachel said. "Then she finally went deaf. And now she's in her thirties, but she has brain cancer from getting cancer in her ear and the cancer spreading from her ear to her brain."
I must have looked horrified because Rachel backed up, looking terribly sorry, like, "But that never happens! It's like so SO rare!!!"
I talked to Rachel about this very conversation three years ago, and we were laughing because Rachel was like, "I was so brain dead during that time. Why the HELL would I ever tell you that story? WHY THE HELL WOULD I EVER TELL YOU THAT?" I was like, "I'm kind of glad you did. I thought that neurosurgeon was a lunatic."
BTW, my daughter's only had one shunt revision. Her shunt, the gauge part, about four years ago, shifted because her head was growing. So the doc just realigned it, and while he was in there digging around, he switched it out with a new and improved.
Oh, wait, I thought this was really fascinating. This guy had a shunt, and it malfunctioned but it wasn't like it was a total blockage. It was a slow, slow build up of fluid over time and when they did an MRI or whatever, they found the guy was basically functioning normally but had NO BRAIN LEFT. Like he just had the smallest rim of a a brain. The rest was filled with fluid. But he functioned normally. Had a job. Just under average IQ.
Anyway, so what's my point? Oh, my daughter has autism. We had the diagnosis for insurance and school purposes.
And once she got diagnosed, and we had a name--once we heard the words "Autism" and saw it on paper "Amira Abed, autistic spectrum"--this huge paradigm shift happened. I was really really mad at her for a week after that. Every time she would be doing the annoying stuff that she always does, I'd be thinking, "Stop being so autistic, God! You are SO AUTISTIC, you are driving me insane. I cannot stand living with an AUTISTIC PERSON! Why do have this AUTISTIC child who is so weird and does all this weird stuff and never listens to me or anything I say and won't follow any directions because she does not care about me whatsoever!!! Don't come up to hug me. I could be a wire monkey for all you care. I know this hug is for you, not for me. You know why I know? BECAUSE YOU'RE AUTISTIC AND THAT"S HOW YOU AUTISTIC PEOPLE ARE! Huff!"
My husband and I were like, "Is it just us? Is she acting MORE autistic now that we have this diagnosis? She just seems so much more autistic now."
Of course it IS just us. Language is so powerful. One word can really change the way you think. This is good news. It was bad news for us then, but it's so great to confirm that words can punch people in the brain SO HARD. They work like that. We are in the right field! When I write something, it's possible my writing might do something to someone at some point.
So anyway, my husband and I were super bummed for a week. We weren't even talking. It hit us so much harder than we thought it would. We would just sit in the car, staring straight ahead at nothing. It was just understood. "We are so sad right now. We can't even talk about this shit."
But now it's a relief. Because before, she'd do some weird stuff at a restaurant, and my husband would be like, "Oh, I'm really sorry, she's uh . . . special." And I would look at him, all squinched up like, Don't say... 'special!' I hate when people say 'special!'" But what could you say? There wasn't any neat way to wrap it up. No easy medical term you could rattle off to a waiter. But now there is.
Now we can just be like, "Sorry she just spit on your floor, dude. Autistic. Know what I mean? I think you do."
JESUS LOVES ME THIS I KNOW
I've been gone so long. I shut my blog down for a second that lasted a entire month and made it private too. I thought I might be looking for a job. Then I didn't.
Then I thought I might be working with some hard-core Christian clients at my present job, and I was, but then it occurred to me that I don't care. I doubt they will either. I think my Introduction to the New Testament course I made for them is A-okay. Jesus would approve. Jesus would chip my socioconstructivist tasks onto a stone tablet and throw the tablet on top of a mountain and say, Pretty good, pretty good. Learning-by-doing, I like the concept.
I was also working on my novel every minute of the day and didn't finish it.
So something weird happened. This weekend I was indoors ALL weekend. I didn't step outside. My kids weren't with me so I was trying to get as much writing done as possible so I got up and started writing at 5:30 a.m. and did not stop until 9:30 p.m. at night. I did that both Saturday and Sunday.
Finally on Sunday, I decided to go for a walk at 10 at night. I walked outside, and it occurred to me, I hadn't seen anything "live" move in 48 hours (oh, except my fingers). So all motion struck me as so strange. Like the leaves rustling on the trees startled me, and then when I walked over the overpass, I was so scared. I thought something terrible had happened, some kind of massive city-wide disaster had occurred, and everybody was speeding to try to get off the Dan Ryan because all the cars looked like they were traveling at like--no exaggeration--120 miles an hour. I was filled with this paralyzing fear, like "Why is everybody driving like that? What is HAPPENING?" It's like the physical laws of the universe were thrown out the window while I was on my weekend writing binge.
What do you think this is? Like psychologically/physiologically speaking? Any guesses?
I asked Elisa and Kathleen and they said, no idea, but blog it. So I obeyed.
Hi! I've missed you.
I think I may post a bunch in a row to make up for my absence. Is that obnoxious?
Thursday, April 21, 2011
LISTENING TO THIS SONG IS THE OPPOSITE OF A CHORE
The song "A Chore" by Tom Vek makes me want to jump for joy.
At first I was so confused. I thought that Ziggy/Debbie girl was singing it. Why does she sound like Tom Vek?
I love everything about her. Her fangs and her size 13 pink tranny pumps and her yellow pants.
I WANT THOSE PANTS.
I want that girl to come to my birthday party next year.
UPDATE: My husband watched the video and told me, "First thought, best thought, That IS Tom Vek." I have no idea. I still want her to come to my party.
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