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Bob Woodruff Week

February 28th, 2007 by Joyce

It seems that this week was “Bob Woodruff Week” on ABC. Remember he was the ABC anchor injured while reporting in Iraq last year. An IED shot rocks through his upper body and into his brain. Watching the recent coverage of his 13-month (and counting) recovery process, I saw a small reflection of my own recovery through his.

That’s because his TBI (traumatic brain injury) affected, among other things, his brain’s language centers. He woke up with auditory processing problems just like mine, and just like me had trouble remembering words for the most simple objects. Just like me he didn’t know if he was identifying objects correctly, or pronouncing even the simplest words in the right way. I nodded my head. “I know that feeling,” I wanted to tell him through the television. It’s as if the brain and the mouth become disconnected, operating independently, not necessarily of the same body.

Weeks after my surgery, I’m closer to normal. I still lose or misuse words, and I still have moments when I feel like my mouth and brain aren’t communicating like they’re supposed to. But those issues are small, and manageable. I was sent home with the faith that in short time, everything would be okay. Bob Woodruff’s recovery continues, over a year after the IED. He spent weeks at the hospital receiving the best care possible. Once home his care continued, supported by a large network of family and friends, and subsidized by ABC.

But I wonder about the people who experience brain injuries and don’t have large family networks to deliver humor, make mint tea at 2am, fetch groceries or feed the cat. I wonder about the people who don’t have comfortable jobs with employers who offer robust disability packages and comprehensive health insurance. What do they do?

And I think about the people who rested in the hospital alone. In the six days at the hospital, I was almost never alone. But what about the people who didn’t have someone keeping them company while they lay in the hospital bed, advocating for them and fluffing the pillows? What about the people who didn’t have a second ear listening to the doctor’s directions and advice? What do they do?

I think about those people, and even though I’m supposed to focus on recuperating and getting back to whatever normalcy I had before the AVM hemorrhaged, I make lists in my head, on my bathroom mirrors, in my recovery notebook. What do they do? And if they can’t, what can I do?

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The Ugly Chair

February 23rd, 2007 by Joyce

Carmen has a new habit. She’s taken to rocking herself to sleep in the recovery recliner (endnote below if you need it) when it’s time to take her afternoon nap. If she senses the rocking slow to a still, she rocks herself again, her eyes still closed in sleep. For a while she slept with the blanket my mom finished while she was here, but she’s found a better lovey for naps in the recliner: a remote control. As she falls asleep, and then sometimes as she sleeps, she waves the remote like a wand toward the television (off, of course). When her arm falls to her side, the remote control remains tightly in her hand.

I thought children were supposed to sleep with blankies, bears, dolls . . . but a remote control? To complicate the issue, Carmen has to sleep with HER remote control. The black remote control (which operates the television) is by her decree mine; and the grey one (for the attached DVD player) is apparently entirely Carmen’s.

I like to watch Carmen rock herself to sleep with a smile on her face. And it seems sweet, that after months of rocking her when she was wee, now she is old enough to rock herself. On the other hand, she had long ago already learned how to fall asleep without any rocking at all. Now it’s as if she’s back to her bad habits. I have an image of her as a four-year-old sleeping in the recliner, and another image of Carmen in college sleeping in the same recliner.

But I haven’t bothered to make her sleep any different. At this point I haven’t the stamina to try to persuade her to sleep any other way. And, anyway, I can’t blame her for sleeping there. It’s a comfy chair. Besides, there’s no harm in it.

Unless she wants to take it to college. I won’t let her. It’s mine!

Endnote:
Recovery recliner, aka, Mommy’s chair, the Ugly Chair (a term of endearment after its vintage orange and brown floral pattern), the Mommy-needs-to-sit-for-a-minute-in-a-quiet-dark-room-and-be-left-alone-so-she-can-rest-her-poor-brain chair. I love the Ugly Chair for its compact, femine proportions, high back, and easy spring rock. C&D like it for its rock, and because they can barely fit two across in it. Best enjoyed while watching the TV Dad brought from San Antonio, preferably with the footrest up and a blanket on your head.

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EEG Day

February 19th, 2007 by Joyce

Drs. Chen and Lopez wanted to run an EEG to make sure that the strange electrical tingling and humming I’ve been experiencing recently wasn’t seizure activity but just, as Dr. Lopez explained, my brain “settling.” What I learned today:

  • The nifty guy in Neurophysiology who ran the EEG was named John. He was the perfect person to run the EEG, because he knows something about brain injuries. The day before he turned 21, he crashed his dirt bike and broke his skull in many places, sort of like Humpty Dumpty. And he is fine. Kids, a good job, the works. I figured if he was fine, I could be fine, too.
  • John knew my head felt sore. And he knew around the scar my scalp felt weird, almost as if when I touched it, I wasn’t touching my head at all. John reminded me that when nerves heal they do so slowly, at like 1mm/year. So I guess my head will feel funny for a while longer.
  • When I agreed to the surgery, we didn’t have time to discuss the particulars. Dr. Chen told us the AVM was in the “speech area” of my brain. By the location and by something an ER nurse mentioned as I was being wheeled to the ICU, I guessed the AVM was somewhere around the Wernicke’s area and the amygdala (maybe between?). I never had a chance to really answer my questions (partially because we were in a bit of a rush to just fix the AVM and get it over with before it caused any more problems, and partially because at the hospital I wasn’t able to communicate very well, anyway). John’s paperwork seemed to have support my hunch, however. When we left the Neurophysiology Department, I punched Matt on the arm. “I told you!” I said. “Wernicke’s!” I get frustrated when I can’t find a word like, say, “washing machine,” but I was happy that I could remember a word like Wernicke’s.
  • I learned a little more about Dr. Lopez. I liked Dr. Lopez immediately because he reminded me of John Robles. John Robles was Jamie Robles’ brother, and the three of us were in a lot of the same classes in elementary and middle school. John was always teasing Jamie, and getting in trouble. When he was getting ready to play a joke or being downright naughty, he would hold his head high, and look down at us over his nose, with a twitch in his smile. Dr. Lopez standing over my hospital bed, with a hint of smile on his mouth, I would think of John Robles, and want to laugh, and feel that whoever Dr. Lopez was, this doctor that I didn’t even choose but instead chose me . . . he at least felt familiar and like an old friend. So, anyway, John (from Neurophysiology) told me that Dr. Lopez was known as an “intensivist.” His genius was in taking critically sick patients–like stroke or heart attack patients–and using novel treatments to save their lives. Now I like Dr. Lopez even more.
  • John pointed out that the healing process in the brain can create feelings of weird phenomena like this: an electrician who works on a house gets to turn off the power first. The brain can’t do that (with no electricity in your brain, you’re dead, unfortunately), so it’s very busy plugging and unplugging new connections, and a few sparks happen here and there as a result. But the weird phenomena–as yucky-feeling as it is–mean the brain’s trying to heal itself. So tingle and buzz away, little brain.

Completed 8 March 2007.

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Guest Blogger Returns!

February 19th, 2007 by Joyce

Ah, you poor folks out there in blogger land! We’ve been too busy to post much, so look at what you’ve been missing:

David: “Bear’s hungry!”
Me (looking over at teddy bear, who seems fat enough to me): “Ok!”
David walks over to his bucket of blocks, grabs a circular one, holds it upside down like a cup, and brings it over to the bear.
David: “Bear wants water.”
David gives the bear a couple of good swigs.
David: “Bear’s hungry! Bear wants banana!”
David walks over to his bookshelf and gets his toy banana – a soft, knitted one. He brings it over to the bear and holds it up to the bear’s mouth.
Me (looking back at teddy bear, and you know, now that David points it out, the bear could stand to gain a bit of weight…): “Ok!”
David gives the bear the banana, then frowns a little bit. “[he] doesn’t like it!”
David puts the banana back on the shelf and walks away.

That’s just how days go sometimes, I guess. Luckily, C&D rarely say “don’t like it!” Especially not when their mom cooks, which is fairly often these days.

We’ve been learning our alphabet, too. All those days looking at their books and the pictures in them, and a few weeks ago they finally started pointing to the little black scribbles below the pictures and tried to make sense of them. Here’s where we’re at:
A is pretty easy, except it kind of looks like a V upside down, and that makes it tricky
B is OK, except when I draw it, in which case it looks like a pair of glasses
C isn’t bad, except that it looks like a rainbow, which is one of C&D’s favorite shapes. Give them a crayon, and you will see a whole bunch of rainbows. Last night, Carmen figured out that C is for Carmen.
D isn’t for David, at least not yet. But that doesn’t stop them from at least learning the letter.
E is for Elephant, their second favorite (after Giraffe) zoo animal
F is the celebrity letter. They love to have someone draw F’s for them. Draw them some other letter, like a J or a K, and they look up and say “F! Draw F! Draw F!” – and then once you do, it’s “More F! More F!” until you have a page full of F’s and you’re out of room. Can’t figure it out.
Haven’t gotten to G yet. Looks too much like C, and thus like rainbows. Best to have just one rainbow letter for the moment, right?
We know H and I, and sometimes J and K, but think they’re kind of boring.
L is for Lion. Roarr! Carmen especially likes to roar.
M is soooo tough to distinguish from W. But we’re working on it, along with N.
O is really easy. They are so past O. Draw a picture of an O, and it’s like, come on, give me a tougher one to figure out.
P looks like a choo-choo train. No? Don’t see it? Cut one out, stick it sideways on the floor (long side down) and start pushing it around. Choo! Choo!
Haven’t done much with Q and R yet. Still working on it.
S is like a Snake! SSSSSSnake!
T is like a Tree. They both like trees.
U is for Umbrella. A big floppy hat, a blanket on your head, and so many other things are like Umbrellas too.
We know V, but don’t know what it stands for. I don’t play the violin, we don’t have any violets growing out front, and they’ve never met the vice president.
W is another celebrity letter. We like it almost as much as F.
X is for Xylophone. Yep, we like xylophones.
We like Y, too, especially David.
Z is for Zipper. We like zippers, too.

And yeah, we’re still singing. Did I tell you we were still singing? Songs from Signing Time, the Biscuit Brothers, and who knows what else. Carmen sings “Home on the range” when she’s supposed to be going to sleep. They sing to each other, they sing all by themselves, they’ll sit and beg for you to sing to them.

And somehow, our favorite pastime has become the “I See Game”, essentially just “I spy”. “I see something yellow! I see something soft! I see something big!” After two months of doing this pretty much every day, I think I see the need to dream up another game…

–Matt

Daddy, so outdated already!

As of today, both C&D know D is for David, and Carmen knows D is also for dog, “wuff wuff!” (And don’t forget to sign it!)

“Home on the Range” apparently is about screwdrivers. Don’t ask me these things, ask Carmen.

And Y, everybody knows Y is “Y like yellow!” (and sign that, too, just for emphasis).

But the best? Carmen rocked herself to sleep in the rocking chair this afternoon during naptime. Remote in hand, and my new afghan over her lap. Occasionally she would wake, realize she wasn’t moving, and give herself a few rocks before settling back to sleep. Watching that was almost as cool as the day a couple weeks ago when David learned to spit mouthfuls of water in nice, even streams. All over my floor. And on my lap. No time for being the Mommy and suggesting he don’t spit . . . I was too busy laughing into my shirt.

Thanks for the post.

8:28 PM, February 19, 2007

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D-

February 17th, 2007 by Joyce

Last night I stayed up nearly the entire with Carmen. She wanted to press her head against my neck, and rock, rock, rock.

By two in the morning, my head started to buzz. I traded babies with Matt, rested for an hour or two, and when she was finally asleep, joined her.

I woke up an hour or two later, listening to Matt and David play. I relaxed in the bed, thinking and feeling my head buzz again. Then I heard the garage door open. Where were they going so early? I slipped away from Carmen, and walked outside in time to see Matt and David ride away.

I didn’t want to be left alone, not after last night. I dialed the cell number, and heard it ring in the kitchen. Argh! Where was he going, and when would he be back? What if I had a seizure? Who would help me?

I decided I should go back to bed,  little unsettled and scared.  I lay in bed, listening, until Carmen woke up, and Matt returned home.

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Because I have a laptop

February 17th, 2007 by Joyce

. . . and can blog in bed:

You know what’s a frustrating thing? Hearing people say things like, “oh, she must be so frustrated that the world is passing you by.” No, temporarily feeling frustration (because, say, I burnt my toast) and being frustrated (because, say, I am the burnt toast) are two different things. My state of being is not frustrated. (By the way, thinking of you saying things like that, I am feeling frustrated.)

How many times can I use “frustrated” in a paragraph?

Oh, I have a story for you. Today Matt brought me a whole turkey by accident. Twenty pounds. We have to cook it tomorrow because it’s already partially thawed. Let’s have turkey for breakfast, turkey for lunch, turkey for supper. Because I cannot handle the grocery store right now (especially Kirby Whole Foods on a Saturday morning, yowza), Matt has been doing the grocery shopping. He is supposed to shop according to a list that I build after I develop a menu for the week. So today he took C&D shopping early in the morning. Going down the list he saw where I had written toward the bottom, “stuffing for turkey.” I just wanted stuffing. In the list, I even expounded on the stuffing concept, and wrote something like “not Stove Top, something like Pepperidge Farm.” I just wanted stuffing, I didn’t have hte energy to make it myself, and I didn’t want Stove Top. And I only wanted stuffing because I knew we had several pounds of chicken in the freezer. I thought C&D would like it with stuffing. (Okay, at the time I thought the chicken was turkey, but did it matter? It was bird.) So Matt read the list and said, oh, we don’t have turkey in the freezer, we have chicken, so let me buy Joyce a turkey. He says he didn’t want to call me because he thought I was sleeping. Actually, I was awake. Regardless, f you ever think you might want to bring me 20 pounds of turkey, call me to make sure I really want it. I probably don’t. I probably just want stuffing. Anyway, so Matt bought the only turkey they had, and it was gigantic, and probably like $80 because it was Diestel and organic and raised watching soap operas and eating organic turkey feed. Or whatever. It’s a lot of turkey.

And I still have to cook all that chicken in the freezer.

And I have another story, but this one isn’t funny. Right around New Year’s, I ordered a lot of clothes from someone on eBay. A few days after I ordered the clothes, the seller sent me an e-mail saying that she was late in sending her clothes because her mother had been diagnosed by a doctor with unexplained vertigo. After four days the seller took her mother, who was still feeling awful, to the ER. Her mother was diagnosed with a stroke. It just occurred to me that almost the same thing happened to me. A chill ran up my spine. I should write and see how they are doing.

Entry expanded 7 March 2007. Do you know how long it too me to write a blog post or even an e-mail back then? Forever! Now that I’m feeling even better, and a little faster, I can go back and finish the posts I started weeks ago.

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A New Fear

February 16th, 2007 by Joyce

I have a new fear. I am afraid of having a seizure in the shower.

It’s kind of silly. My likelihood of experiencing a seizure as a result of the surgery is relatively low, although looking at the big honkin’ bottle of Keppra in my dresser drawer reminds me that my neuro team knows that the risk isn’t so low it’s negligible or ignorable. And seizures increase the risk for mortality after such an operation like mine.

But the deal with a seizure isn’t so much that I’m afraid of the seizure itself; I’m afraid of falling and hitting my head. It hurts already. I don’t like it when things happen to my head. And the tub is hard.

I mean, why do you think I’m such a chicken on a road bike? Even with a helmet, my head is a good five feet above the asphalt, and there I am sailing along faster then maybe God intended, my tender little head wearing nothing but a piece of styrofoam, my road tires nothing but glorified rubber-and-Kevlar rubber bands. Over 20 mph and I get very nervous.

Anyway, like I said, it probably won’t happen. But I look at the bathtub sideways for a bit before I step in.

Off to get clean and face my fears, small and silly as they are.

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