This afternoon I was once again invited to speak at our local university's Take Back the Night March and rally. Take Back the Night is a grassroots, largely college campus based effort to bring attention to issues of rape and sexual assault, and to quite literally take back the night..and the day and claim our environments as safe spaces, free of sexual assault. And once again I prepared my remarks thoughtfully, highlighting one component of the rape culture that students can relate to and offered some direction. My remarks this year focus on institutional betrayal. I wanted to address Title IX violations on campuses that do not adequately follow through on complaints of rape, for example. Featuring the newly released list of 55 campuses who are under Federal investigation for such violations.
I wanted to bring their attention to the still missing 276 high school girls in Nigeria that were abducted from their boarding school because the terrorists that have been holding them for nearly a month are against the education of girls. I wanted them to know that there are reports that the girls are being sold for $12 to militants to be their sexual slaves and that the Nigerian Government has turned a blind eye. I added to my remarks a quote from Nicholas Kristof at the NYTimes about how many nations have mobilized in the search for the passengers of the missing Malaysian airliner, but that there has been no serious search for the abducted girls, who outnumber the missing passengers on that fateful flight.
So with speech in hand I stepped up to the microphone and, for the second year in a row, looked out over a sea of....15 students, and delivered my speech. The lack of students, at least on this day in this place, dedicated to social change got me thinking. It got me thinking about feeling powerless to change things and apathy. Now, I can't generalize in this way about my University's population of students, after all 15 of them showed up. But I'm talking about our culture in general and myself in particular.
I was thinking about the marches and the petitions etc. concerning epilepsy that I frequently bow out of. It isn't apathy that confounds me. Certainly not that, not when it is front and center in my life daily. But I do feel quite exhausted. Powerless, perhaps, but more so that I cannot imagine pulling back the lens to see the big picture.
It angers me that on any given evening our (TV) dinner will be interrupted with phone calls from Save the Children, Paralyzed Veterans, The Leukemia Foundation etc, etc, etc. But never have I answered a call from anyone raising money for or awareness about epilepsy. However you won't find me making such calls, when certainly I could.
I was thinking about what I actually do with my time. Forward motion, or dead stop. Those are my only two speeds I'm afraid. The forward motion moves me through my work and gets dinner on the table(s). It gets appointments made for Ces, drags Griffin through his Social Studies 12 class that COULD prevent him from graduating. (The kid is killing me.) Then, dead stop. I can lay back like no one you know. Weekends are lazy and non-productive. And that's just fine with me. But too frequently I look up and a month has gone by or a whole season.
I think I need to build in time to plan, to set goals, to mobilize. I would like to be more active in organizations like The Cure or attend Epilepsy Foundation functions. I'd like to bother random strangers at dinner and ask them to devote some of their energy (and dollars) to addressing an illness that affects more people than multiple sclerosis, cerebral palsy and Parkinsons combined. Just not today. I'm going to take a little nap.
Sunday, May 4, 2014
Wednesday, April 30, 2014
Different Lenses
Between my world of emotionally troubled kids at school and my world of epilepsy and its tentacles at home I think I have a skewed view of the world. That comes with years of one foot in either of those worlds...and I have 23 in the former and 17 in the latter.
My kids at school are aged 12 to 21. Most are bright and all are hurting. Some have arrest records, some are having sex at 13, some are traumatized and others are traumatizing. I counsel one young man I like very much who is cared for by a woman to whom his mom turned over custody in a grocery store when he was three. Terrance has wicked seizures, just wicked. He has two shattered hips from a tonic clonic in which he did not fall: the fractures were purely from the seizure. He doesn't take his meds, not regularly. Terrance is shoplifting and hanging out on the street. A judge attempted to "place him" but the facility wouldn't take him because it would cost them too much in medical care and supervision. My son has a cakewalk compared to Terrance.
I see a young man of 13 who is ravaged by mental illness and is the dearest boy I know. I have been counseling him for five years and he is becoming less and less functional. He yells and demands and bangs his head when he is frustrated. He cannot sustain himself for a school day or dinner out with his family.
Bri is a 17 year old alcoholic, bulimic, depressed young woman who sees the world through yearning eyes. She keeps a razor by her bed to remind her of where she does not want to go. Her parents keep the fridge locked.
My very dear friend and colleague at school, who is my teacher-hero also has a challenged daughter at home. She tells me she feels like she is teaching middle school inmates.
Social skills, social graces. Aspirations, proposals and graduations. This is the stuff of the typical world. Through my lenses though, the typical world is the world of challenges, differences and small successes. The baby steps, the one day without a seizure, a drink or an arrest. These are the kids that I love. I do, I resent my town newspaper that profiles a graduating senior every week from my sons' class. They trumpet the certifications, the athletic awards and the college acceptance letters. Not one, not one, is ever of a differently abled senior for whom one day without binging or for whom making a new friend should be the headline is ever profiled. Shame on them. For these are the kids who deserve the praise and the love. Even if it kills us.
PLEASE add your child's headline below in the comments section. Do it anonymously if you'd like. Add pictures!
My kids at school are aged 12 to 21. Most are bright and all are hurting. Some have arrest records, some are having sex at 13, some are traumatized and others are traumatizing. I counsel one young man I like very much who is cared for by a woman to whom his mom turned over custody in a grocery store when he was three. Terrance has wicked seizures, just wicked. He has two shattered hips from a tonic clonic in which he did not fall: the fractures were purely from the seizure. He doesn't take his meds, not regularly. Terrance is shoplifting and hanging out on the street. A judge attempted to "place him" but the facility wouldn't take him because it would cost them too much in medical care and supervision. My son has a cakewalk compared to Terrance.
I see a young man of 13 who is ravaged by mental illness and is the dearest boy I know. I have been counseling him for five years and he is becoming less and less functional. He yells and demands and bangs his head when he is frustrated. He cannot sustain himself for a school day or dinner out with his family.
Bri is a 17 year old alcoholic, bulimic, depressed young woman who sees the world through yearning eyes. She keeps a razor by her bed to remind her of where she does not want to go. Her parents keep the fridge locked.
My very dear friend and colleague at school, who is my teacher-hero also has a challenged daughter at home. She tells me she feels like she is teaching middle school inmates.
Social skills, social graces. Aspirations, proposals and graduations. This is the stuff of the typical world. Through my lenses though, the typical world is the world of challenges, differences and small successes. The baby steps, the one day without a seizure, a drink or an arrest. These are the kids that I love. I do, I resent my town newspaper that profiles a graduating senior every week from my sons' class. They trumpet the certifications, the athletic awards and the college acceptance letters. Not one, not one, is ever of a differently abled senior for whom one day without binging or for whom making a new friend should be the headline is ever profiled. Shame on them. For these are the kids who deserve the praise and the love. Even if it kills us.
PLEASE add your child's headline below in the comments section. Do it anonymously if you'd like. Add pictures!
Monday, April 28, 2014
Sleep
I have a lot to say about sleep. I can talk about menopausal lack of sleep, melatonin induced sleep, seizures during sleep, administering meds when I'm half asleep, sleeping alone, sleeping on my feet...I have a lot to say about sleep.
Cesare is a nocturnal seizer. That's not a word, by the way, but should be. He seizes almost 100% at night. He does not have tonic clonic seizures but he is partial to clusters. He really likes clusters. So when he gets rolling, I need to give him Ativan to stop the clusters or if really, really bad rectal Diastat..though he hasn't needed that in years. What happens when you cross a woman "of a certain age" with many nights of interrupted sleep? I don't know. What was the question?
My head is frequently scrambled. That's hard when I work with emotionally disturbed teens. They demand so much, rightly so. But my memory is just awful. With my middle schoolers, I often hide my bamboozlement behind an oft told tale that I am 104 years old. (When I recently slipped and told them about turning 50 one little cupid said "I KNEW you weren't 104!!" Thank you.)
I have a confession to make: I yearn for a cold. A rip roaring, coughing, stuffy nose, oozing cold. A fever would be icing on the top, but it isn't absolutely necessary. Know why? Nyquill Night Time Cold Reliever. It is a legitimate way to get a solid nights sleep. It is a note from a parent covering a skip day at school. It is a Federal Holiday when work is oppressive. It is a snow day, a vacation day. It is Queen for a day. I have no guilt, and let the chips fall where they may. This may be foolish, and maybe foolhardy. But once in a while, I just need to sleep. So please, cough on me, and bring on the Puffs Plus and the licorice spiked Nyquill 'cause Mr. Sandman....I'm coming your way.
Cesare is a nocturnal seizer. That's not a word, by the way, but should be. He seizes almost 100% at night. He does not have tonic clonic seizures but he is partial to clusters. He really likes clusters. So when he gets rolling, I need to give him Ativan to stop the clusters or if really, really bad rectal Diastat..though he hasn't needed that in years. What happens when you cross a woman "of a certain age" with many nights of interrupted sleep? I don't know. What was the question?
My head is frequently scrambled. That's hard when I work with emotionally disturbed teens. They demand so much, rightly so. But my memory is just awful. With my middle schoolers, I often hide my bamboozlement behind an oft told tale that I am 104 years old. (When I recently slipped and told them about turning 50 one little cupid said "I KNEW you weren't 104!!" Thank you.)
I have a confession to make: I yearn for a cold. A rip roaring, coughing, stuffy nose, oozing cold. A fever would be icing on the top, but it isn't absolutely necessary. Know why? Nyquill Night Time Cold Reliever. It is a legitimate way to get a solid nights sleep. It is a note from a parent covering a skip day at school. It is a Federal Holiday when work is oppressive. It is a snow day, a vacation day. It is Queen for a day. I have no guilt, and let the chips fall where they may. This may be foolish, and maybe foolhardy. But once in a while, I just need to sleep. So please, cough on me, and bring on the Puffs Plus and the licorice spiked Nyquill 'cause Mr. Sandman....I'm coming your way.
Friday, April 25, 2014
"Where's He Going?" Chapter II
Actually, there are any number of chapters of this particular book. Tonight, Cesare knows darn well where his twin is going: the prom.
Griffin proms: 2 Cesare proms: 0
This is Griffin's friend Zaynia's Junior Prom. Griff and Cesare are seniors and the dreaded Senior Ball has not crept up quite yet. Tonight, Ces watches Griff walk out the door for his second time around at Junior Prom fun. This isn't an intellectual process, Cesare understands that Griff was invited..that Griff has friends...that Griff will have a wonderful time. And Ces cheers him on. But none of us in this house can separate ourselves from Cesare's loss. Cesare is slow, but not developmentally delayed. He is disabled but sharp as a tack. He falls into a social crack that his cavernous. His typical friends from Kindergarten, first grade, want nothing to do with him. His peers see him as slow and always in the company of his one to one nurse at school. He has absolutely no friends. Ces is in a "social skills group" run by the local college's speech and language department but most of the kids there have Aspergers and Ces doesn't seem to relate to them, or them to him. Pariah is too strong a term, I suppose, but his peers keep their distance.
As a parent, I don't want Griff to leave the house feeling guilty (though he does). I want him to enjoy being a healthy typical kid. His survival guilt is palpable. He has been accepted to college in the fall and all I want is for him to step on to that campus and leave us behind. I hope that he can do it.
Tonight, I will try to get Cesare to dance with me in the family room. I will try to make him giggle and make sure he has ice cream for dessert. But, it will not be the evening he hopes for.
Monday, April 21, 2014
Have you done this?
- You administer your child's a.m. or p.m meds only to have your spouse walk in and say "I already gave him his meds".
or, another version...
- You're on your way to work, your child has left for school, and you frantically phone your spouse in his car and ask "did you give him his meds this morning?...No? Me either."
- Your child didn't finish his homework the night before, and you know if you hadn't had the second glass of wine you could have sat down with him and done it and you email the teacher in the morning and play the epilepsy card? "It was a rough night...I hope you understand."
- You scold your child for whatever thing you've lost patience with on that particular day and he slides to the floor and has a seizure?
- You make an excuse to skip your friend's child's bar mitzvah/ confirmation/sweet sixteen party/graduation extravaganza/school play/band performance/athletic award night/olympic trials etc... because you can't bear to be immersed in typical kids' success stories?
- You have a third glass of wine/gin and tonic/beer instead?
- You take the hairbrush away from your child, who doesn't give a rats ass about how he looks, and brush his hair over the surgery scars to try and hide them for him?
- You try to fly the "Well, honey, if we can't beat epilepsy, maybe we can make friends with it."
- You hover and linger and cajole and make a general nuisance of yourself?
You've never done any of these things? Me either.
Friday, April 18, 2014
Trigemination
It's a good news, bad news thing. We saw Dr. DeGiorgio at UCLA on Tuesday. Despite Cesare's seizures worsening over the last six months since our last check in he still found a 20% improvement over his pre-enrollment rate of seizures with the Trigeminal Stimulator. Well, that's good news. But he's still seizing virtually EVERY DAY. Dr. D is a number cruncher and an extremely affable guy. He's been on the front line testing most of the major, newer drugs. He knows the research inside and out. He was aghast that Ces was starting Fycompa. "That's a baaaad drug", he said. Bad news. I've already initiated a withdrawal.
The Trigeminal Stimulator, or as we refer to it The Gemmy, has done nicely in UCLA's trials and is now available in Europe with a script, thanks to Dr. D. In the US, new trials are starting at Cornell and NYU (our hospital) in the next six months. If Ces wants to continue receiving Gemmy support, we can easily transfer to NYU. No more rationalizing trips to California. Bad news. (Though, stay tuned for illicit trips to Colorado to smuggle Charlotte's Web out of Colorado Springs coming this summer).
Dr. D and I had a long, frankly circuitous, conversation weighing Cesare's need for autonomy and constant supervision. We talked, as we have in the past, about SUDEP, a conversation I find maddening. How does one have a rational conversation about how to stare sudden death right in the eye? We talk about it like it is a side effect. Dr. D has a simple risk assessment scale for SUDEP. It ranges from 1 to 5. Cesare is a three. A three. So, anything short of sitting up nights and staring down at Ces while he sleeps seems foolish, really. "Research says that the risk of death decreases significantly when there is a parent in the room", he says. But we both agree that I've got to get out of Ces' room, he needs privacy- normalcy. Infrared night camera monitoring, wrist watch seizure alert system, baby monitor, wireless pulse oximeter. I can string the kid up so that if he so much as rolls over I can leap out of bed and race to his room. "I'll be psychotic from sleep loss within a matter of weeks", I reason. "Hmmm" he says.
Why is no one talking about this? We come back to the illusive T word again: Transition. Ces isn't a child anymore. How do we make the leap? Close my eyes, plug my nose and jump.
Dr. D and I had a long, frankly circuitous, conversation weighing Cesare's need for autonomy and constant supervision. We talked, as we have in the past, about SUDEP, a conversation I find maddening. How does one have a rational conversation about how to stare sudden death right in the eye? We talk about it like it is a side effect. Dr. D has a simple risk assessment scale for SUDEP. It ranges from 1 to 5. Cesare is a three. A three. So, anything short of sitting up nights and staring down at Ces while he sleeps seems foolish, really. "Research says that the risk of death decreases significantly when there is a parent in the room", he says. But we both agree that I've got to get out of Ces' room, he needs privacy- normalcy. Infrared night camera monitoring, wrist watch seizure alert system, baby monitor, wireless pulse oximeter. I can string the kid up so that if he so much as rolls over I can leap out of bed and race to his room. "I'll be psychotic from sleep loss within a matter of weeks", I reason. "Hmmm" he says.
Why is no one talking about this? We come back to the illusive T word again: Transition. Ces isn't a child anymore. How do we make the leap? Close my eyes, plug my nose and jump.
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