I guess on Christmas Eve of all days, I permit myself to believe that perhaps Schuyler's strange words aren't necessarily broken, but from some other world that I'll never be able to visit but which, through her, I get to glimpse.There's a poem that I like to quote, one that speaks of an agnostic's dilemma at Christmas, and how he doesn't have faith, but sometimes wishes he did.
In 1 Corinthians, St. Paul describes the tongues of angels, unintelligible to us. Maybe, just maybe, this is what he meant. On today of all days, even in my deeply held agnosticism, I'm like Thomas Hardy in his poem "The Oxen". I'm not inclined to believe in miracles, but that doesn't mean I don't pay attention to the things around me, like Schuyler, that sometimes seem miraculous.
I don't necessarily believe, but sometimes I hope, and that might just be enough.
I love that poem. I'll probably quote it at the end here, too.
Today, however, my thoughts are of Schuyler, and what she calls "the little monster in my head". There are two reasons for this. The first is that as we continue to observe Schuyler and read more about what might be happening to her, we start to figure things out. We're tracking the probable relationship between her menstrual cycle and the onset of seizures, for example.
And we believe we have a better idea of what they are. Not the absence seizures that we originally thought, at least not now. As they become more pronounced, and especially since we observed one of them first-hand recently, we believe that she is having partial complex seizures.
From the epilepsy.com site:
How long do they last?
They usually last between 30 seconds and 2 minutes. Afterward, the person may be tired or confused for about 15 minutes and may not be fully normal for hours.
Tell me more
These seizures usually start in a small area of the temporal lobe or frontal lobe of the brain. They quickly involve other areas of the brain that affect alertness and awareness. So even though the person's eyes are open and they may make movements that seem to have a purpose, in reality "nobody's home." If the symptoms are subtle, other people may think the person is just daydreaming.
Some people can have seizures of this kind without realizing that anything has happened. Because the seizure can wipe out memories of events just before or after it, however, memory lapses can be a problem.
Some of these seizures (usually ones beginning in the temporal lobe) start with a simple partial seizure. Also called an aura, this warning seizure often includes an odd feeling in the stomach. Then the person loses awareness and stares blankly. Most people move their mouth, pick at the air or their clothing, or perform other purposeless actions. These movements are called "automatisms" (aw-TOM-ah-TIZ-ums). Less often, people may repeat words or phrases, laugh, scream, or cry. Some people do things during these seizures that can be dangerous or embarrassing, such as walking into traffic or taking their clothes off. These people need to take precautions in advance.
Complex partial seizures starting in the frontal lobe tend to be shorter than the ones from the temporal lobe. The seizures that start in the frontal lobe are also more likely to include automatisms like bicycling movements of the legs or pelvic thrusting.
Some complex partial seizures turn into secondarily generalized seizures.
What else could it be?
Complex partial seizures sometimes resemble daydreaming or absence seizures.
That describes Schuyler's episodes perfectly. Last spring, we observed her making tiny movements with her mouth while she was "out"; the last time a few weeks ago, she simply slouched down in the back seat of the car and opened her mouth. None of this is terribly new information, just a matter of us putting pieces together and making the connections. I'm also not sure if partial complex seizures are any worse than absence seizures. Just a slightly different monster, and perhaps a slightly better understanding.
The other reason I've been thinking about her seizures today is that I'm pretty sure she had one yesterday, while we were at the mall doing the last of our holiday shopping. It would certainly be a good time for one, as far as stimulus goes. The mall isn't the best place to go on Christmas Eve Eve, after all. I felt a little like I was trapped in an episode of The Walking Dead, not running from the zombies but just scooting along with them.
Schuyler alerted me to this one, telling me that she felt dizzy. This is how she's described it in the past. As soon as we could break free of the "Every day I'm shufflin'" crowd, we grabbed something to drink and took a seat. I took out my phone, hoping to catch this one on video, but it had already happened, probably before she said anything to me about it. What I caught instead was a photo of Schuyler's expression, beautiful and sad. She was probably in what I've learned is called the postictal state, in which she's basically rebooting. A little crabby and a lot disoriented. Another parent of a child with seizures wrote to me and said she knew that look.
And like before, after ten or twenty minutes, Schuyler was back to her old self, although a little fatigued.
The thing about yesterday, however, is this: I think that at the end of the day, when she crawled into bed with Jasper and kissed me goodnight, she was happy. We'd mostly had a good day. And I keep coming back to this in my mind, the fact that we've reached a point where she can tell us that a seizure is either coming or has just happened, and we can deal with it and move forward. We adapt, we recognize that there's a monster in the room, and then we readjust our seating and carry on.
This Christmas Eve, I'm as far away as ever from embracing the Christian faith, and now Schuyler is old enough to express that she doesn't buy it, either. I'm sure that's as much about fitting in with her parents as anything else, but it means that she's aware that this choice sets her apart from most of her peers, and she's making it anyway. She's used to being different, and I believe that she's too strong to put her faith in fairy tales.
And yet, on this Christmas Eve like so many others, I find myself looking at the comfort of big-f Faith and envying that comfort, silly though I may find its underpinnings to be. Thomas Hardy understood that, I think.
The Oxen
Christmas Eve, and twelve of the clock,
"Now they are all on their knees",
An elder said as we sat in a flock
By the embers in hearthside ease.
We pictured the meek mild creatures where
They dwelt in their strawy pen,
Nor did it occur to one of us there
To doubt they were kneeling then.
So fair a fancy few would weave
In these years! Yet, I feel,
If someone said on Christmas Eve,
"Come; see the oxen kneel
"In the lonely barton by yonder coomb
Our childhood used to know",
I should go with him in the gloom,
Hoping it might be so.
-- Thomas Hardy
9 comments:
Agnostics believe in the "there may be more in heaven and earth". It's true atheists that don't believe at all. My issues have to do with formal religious practises of any kind.
Hope you and yours have a good Christmas weekend.
The poem made me cry, as did much of your post. It explains exactly how I feel at Christmastime in terms of faith or lack thereof, and I know what you mean about knowledge and the possible seizures. There's something about knowing and understanding that makes everything more bearable and manageable. The two themes tie together, in a way.
. . .Rob, does Schuyler take any anti-seizure meds yet?
Schuyler's seizures sound very much like Hannah's were at the beginning. . .and like Schuyler, hers were tied to her menstrual cycle. She started having the big ones about 6 months after she started her period. That started a science experiment of trying to find a med that would control them. It took three years until we found one, but she has been seizure free now for over 4 years. (She is 22)
Problem is, the anti-seizure meds are all powerful drugs with a lot of side affects. We resisted the one that we were told would more than likely work the best because of it's adverse side affects. . .but the older she got, the potential of secondary injury became too great. When the onset of a seizure happened while she was in a swimming pool (fortunately her sister and dad were right there). . .and then near the top of the stairs on the second floor at her high school. . .and then the scariest one I witnessed. . .standing in the kitchen with a knife in her hand making a peanut butter sandwich and all of a sudden her hand (with the knife) started flailing around. . .we knew what she was taking wasn't working.
Sometimes she would have that "aura". . other times not, they would just hit and we would get her to the floor or couch as fast as we could before she would fall. She was always disoriented, irritated and tired afterwards. In the early days, she would sleep for several hours after one hit.
If she does start taking a med. . .one of the most important things to watch for are mood changes. On most of the ones we tried that was always a component. Each med has a list of side effects as long as your arm. . .but you never know which side effects are going to affect your child. One time they added a second med to what Hannah was already taking in hopes that it would do the trick. Within several weeks she was headed into a depression. We got her off that med and that was when we decided to try the med the doctor recommended. In Hannah's case, Depakote is the one that has worked for her and we have dealt with the side effects. But every child is different. It really is a science experiment.
Take care. . .
Rob, I wish I didn't know that post-ictal facial expression so well. You are smart to be watching for patterns and documenting things which may seem unrelated. Like snowflakes, every person's response to medications, triggers for seizures, etcetera will differ so I wouldn't dream of suggesting any particular medication or treatment approach. Instead, I will offer a sincere hope that you have a good working relationship with Schuyler's neurologist or that you find a doctor who treats you and Julie as a vital part of Schuyler's team. It can make all the difference in the world; other than Schuyler herself, no one knows her better.
I wish you, Julie and Schuyler all the wonders of the holiday season and a very Happy New Year.
I've been following your blog for a while and this post hit me - the monsters in our kids brains that make it difficult for them to express their thoughts kills me inside. My son doesn't have the seizures like your precious daughter has, but I know too well about not knowing what's going on inside my little guy's head. Thank you for posting your excerpt from 2008 - it explains my thoughts almost exactly. Thank you.
I don't have any first (or second or third) hand experience with seizures, but you reminded me of a quote from a book that was written by a dad whose child died of cystic fibrosis. he was writing about how when she started laughing, towards the end of her life, it would bring on terrible coughing fits. he said (and i'm paraphrasing), "it seemed cruel to me that the things that had the power to make alex happiest could also bring out the worst in her."
i know that stress, busy-ness, and strong emotions can be contributing factors to seizures. hopefully schuyler will continue to not allow the worst to destroy the best.
You guys seem to hammer out adjustments, my experience with the E-Monster is perfecting this very art. I'm mire of a festivus for the rest of us girl, I hope you enjoyed your winter celebrations!
for me, at least, the big "f" Faith, it isn't easy. i spent years struggling to find it. i was raised academic (4 parents with phd's, working at a university). at 11 i was "born again".. then i tried the episcopal church during college, then wiccan, buddhist, unitarian universalist (10 years), then Mormon!, presbyterian, and i've settled into the episcopal church with buddhist and wiccan spiritual influences and mormon practicality influences.
i love being episcopalian. i feel at home in the rituals. it's the church my father was raised in, and is buried in the graveyard of one. i love the liberal politics. i love discovering God.
but still, it isn't easy. my practical, leaning towards scientific, brain has to accept the thing that isn't researchable (i'm on the cusp of a phd in education) as the foundation of my life. and my self that struggles with depression has to be able to find the arms of He who can't be seen to wrap myself in on lonely depression filled nights. finally, my enculturated towards violence self has to find forgiveness for people i'd rather lash out at because that is what Christ has challenged me to do. it's not easy, no. this is one place where i do fit in, but it's not easy. (i have to admit, though, that i don't fit in culturally to church communities due to my being 38 (nearly 39), single and childless.) the challenges, at least for me, that God has put before me, go against my inclinations and sometimes i'd just rather that He would have left me alone.
-brooke r, from rivervision
This is my first visit to your blog. My daughter has many neurological and mental issues. She suffers from mental illness, sprinkled with strange neurological disturbances (that can't be explained), and tremendous learning disabilities. I should not forget ANXIETY. Every day, sometimes month, a piece of the puzzle falls into place. There is no name for all that plagues her, but we have a better understanding of her. I am only now (she is 10 1/2) starting to understand what she needs in terms of a proper education for her needs. I am tired of the school district pushing the "much needed socialization" button. No one talks to her - they talk ABOUT her and she is aware. She hasn't a friend in the world. I am accepting that she is a solitary person who lives within her imagination (out of necessity). I appreciate your comments on religion. We have a hard time with the fairy tale thing, too. However, my daughter loves fairy tales, and church would probably be a place that would be comforting to her. She needs to believe there is a "plan," someone watching over her, angels, and heaven. Thanks for posting your blog. It is helpful for those of us who struggle each day with diseases of the brain in our children. It can be a lonely place.
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