I don't know if there is a way to write about one's pain without seeming to invite sympathy. I've been writing this blog for a year and in that time I've shared the experience of jumping hurdles and I've written about stumbling. Many of you have generously written back. When I am sorrowful, however, I have a difficult time writing. I don't want to be a victim, or sound like a victim. I don't want sympathy. I don't want to be that person. It is one reason I write here thinly anonymously: I want to purge without being identifiable. As I read back through the last year of my blog entries I grow weary listening to this mother who writes of nothing but epilepsy and its choke hold.
I'm a memoir junkie. I've read dozens and dozens of stories of struggle. Jeanette Walls, Augusten Burroughs, Mary Karr, Tobias Wolf, Charles Blow, Ishamael Baeh. In Left to Tell, Immaculee Ilibagiza writes of being hidden for ninety one days in a bathroom with seven other women to survive the Hutu's machetes in Rwanda. Martin Pistorius, in Ghost Boy, describes being locked in his body but fully conscious, dismissed by doctors as terminal and unreachable. Amanda Lindhout endured 460 days held captive in Somalia. I have no patience for the melodramatic writer. A clean dispassionate yet earnest account is what keeps me glued to the pages. Not all of the authors have "triumphed": some are slightly broken living slightly off-kilter lives.
I am not those writers. I haven't lived a life of abuse. I haven't been buried in my brain or underground or hid from terrorists. I feel as though after a year of writing about epilepsy, I should be moving on. Coping, surviving or whatever it is that people do when they resist sliding into a hole. More than driving a truck through our lives, these pages seem to reveal lives seated firmly in the truck. We occupy all of the available spaces but for the driver's seat where epilepsy is obtrusively maneuvering our course. I feel like epilepsy owns me, or at least a controlling share of me.
I haven't written in a few months. I've been in a dark place. Cesare hit another rough patch. I hit his seizures with everything we had. I drained our emergency supply of midazolam and slept with one hand on Cesare's chest. He ended up back in the hospital. They added a fourth anti-epileptic drug and a VNS. And though he is now more stable, I was drained. I felt like a victim and knew I'd sound like one if I wrote.
I've not completely shaken this feeling. I too often feel sorry for myself though I know I shouldn't or certainly shouldn't admit to it. Of course the irony is that I don't have epilepsy. I am healthy and privileged in many ways. I am, however, entangled in caregiver-itis and parent-itis. It's too blurry where I sit right now: where Cesare begins and I end.
Thank you, Beth and Paola, for reaching out recently and for being supportive and kind listeners. I hope to keep wrtiting but I want to write of more than epilepsy. I want to drain its power and find a way to distance myself from this persona. Perhaps I need a new blog for that.
Monday, May 11, 2015
Tuesday, February 24, 2015
Postictal
The postictal phase of a seizure is the period of recovery after the electrical event has ended. I've never had a seizure, but I feel like I'm in the postictal phase of one now.
Cesare's case went before the surgical board at NYU. They considered his candidacy for the RNS implant. They said no. The build up, let's call it an aura, lasted about five months and included a smorgasbord of tests: VEEG, MEG, neurophychological, MRI. The event itself was simply a brief email. For a moment, I lost my breath and couldn't hear anything around me.
The after effects of a seizure can include "both psychiatric and cognitive symptoms". I have both. I feel angry and I think I could wail on someone. This isn't a rational anger. The surgical team did not "set up" my son, nor did they come by this decision casually. But postictal behavior isn't rational. Or is it?
I just want treatment: every last established or experimental treatment that exists. Anywhere. That's all any of us want. The inequity of the CBD oil phenomenon, for example, is cruel. Those of us outside the small windows of places like Colorado Springs are like empty pocketed children who may only put our noses to the glass and wish we were allowed in to the sweet shoppe. Today I read three articles about parents whose unimaginable loss could conceivably have been prevented with access to CBD oil for their children with epilepsy.
I understand controlled studies. I understand risk analysis. But I'm a parent and you probably are too. That supercedes patience and tolerence for regulated health care. Shirley...
Perhaps a different but no less exacting role is the epilepsy doc or surgeon who has to say "no". Hundreds of patients and managed medicine that demands docs squeeze caring into just minutes for each appointment. An inbox that's never empty. Failed treatments. Patients who succomb. Two of Cesare's docs over the years left their jobs because it was just too much: one I still miss, the other had no heart. But those that see it through are quite simply remarkable. The doc who perfomed numerous surgeries on Cesare, and is responsible for eliminating Ces' most severe seizures, still rides his white horse into the operating room at NYU after 25 years in practice..even though he declined to mount-up this time.
I'm sure with time I'll shake off the impulse to smash something or to picket the hospital and I'll allow rational thought to reign.
What comes after the postictal phase? Life.
Cesare's case went before the surgical board at NYU. They considered his candidacy for the RNS implant. They said no. The build up, let's call it an aura, lasted about five months and included a smorgasbord of tests: VEEG, MEG, neurophychological, MRI. The event itself was simply a brief email. For a moment, I lost my breath and couldn't hear anything around me.
The after effects of a seizure can include "both psychiatric and cognitive symptoms". I have both. I feel angry and I think I could wail on someone. This isn't a rational anger. The surgical team did not "set up" my son, nor did they come by this decision casually. But postictal behavior isn't rational. Or is it?
I just want treatment: every last established or experimental treatment that exists. Anywhere. That's all any of us want. The inequity of the CBD oil phenomenon, for example, is cruel. Those of us outside the small windows of places like Colorado Springs are like empty pocketed children who may only put our noses to the glass and wish we were allowed in to the sweet shoppe. Today I read three articles about parents whose unimaginable loss could conceivably have been prevented with access to CBD oil for their children with epilepsy.
I understand controlled studies. I understand risk analysis. But I'm a parent and you probably are too. That supercedes patience and tolerence for regulated health care. Shirley...
Perhaps a different but no less exacting role is the epilepsy doc or surgeon who has to say "no". Hundreds of patients and managed medicine that demands docs squeeze caring into just minutes for each appointment. An inbox that's never empty. Failed treatments. Patients who succomb. Two of Cesare's docs over the years left their jobs because it was just too much: one I still miss, the other had no heart. But those that see it through are quite simply remarkable. The doc who perfomed numerous surgeries on Cesare, and is responsible for eliminating Ces' most severe seizures, still rides his white horse into the operating room at NYU after 25 years in practice..even though he declined to mount-up this time.
I'm sure with time I'll shake off the impulse to smash something or to picket the hospital and I'll allow rational thought to reign.
What comes after the postictal phase? Life.
Monday, January 19, 2015
Separation Anxiety
As I am writing this post I need to stop every few minutes to comfort Ces who is lying next to me. He's in day three of completely unexplained batches of seizures: as many as ten back to back more than once in a day. I've already administered Ativan to calm his system...but he keeps rolling- 30 to 40 seconds each time. He freezes, gasps, trembles, sighs, and then says, "over". Last weekend he seized sitting in the bathroom and tumbled into the vanity lacerating his scalp pretty colorfully. He is scheduled to have the staples removed this afternoon.
And each one of these suckers, as they always have, start with a fear aura. What must that be like? Undefined terror grips Cesare that can't be explained, and can't be quelled with any of the conventions the rest of us use to confront our fears: a light in the dark, or safety in numbers.
Cesare has already topped out each of his anti-epileptic drugs. There is nothing left to increase, and virtually nothing on the market he hasn't tried. His safety intervention med is a nasal spray, called Medazolam, which has thus far proved worthless. So I pile on the Ativan which makes him sleepy and dopey. (He's just had his eleventh seizure and I've just handed him his second Ativan).
The last time this strange cycle occurred was early November. After increasing his Fycompa, his old pattern returned: averaging two or three seizures daily, usually around bedtime. (My apologies, Fycompa, to anything I have said in the past about your potential side effects that may have offended you).
With the confidence that that strange anomaly had passed and with the advent of the new year we spent some of our Winter Holiday moving me out of Cesare's bedroom. New paint, some new furniture and the plan to order a nifty kind of new pulse-ox that is worn like a wrist watch.
This has been a difficult move for me... a whole different kind of letting go from the tearful goodbye I had just said to Griffin in the fall as he headed for college. And wouldn't you know, Griffin leaves this afternoon to return to college after a month home. Two very different kinds of separation. Two very different kinds of anxiety. I am preoccupied with both.
Last week, Griffin engineered making good on a challenge he had with his brother: when they turned 18 they would get tattoos. They agreed on the Celtic symbol for Brother. They are both quite proud of themselves, and I am quite teary.
Cesare is gearing up for his own loss as his twin packs up to leave today. We've talked about coping and what forms that can take. Cesare says he needs to wipe Griffin from his memory to make the transition. He told me yesterday that he wouldn't be wearing T-shirts for a while. He wants long sleeves to cover up the symbol that represents what he will soon be without.
Cesare has stopped seizing now, and we'll go on with our day. Tonight, I'll be in my bed with my ear close to the baby monitor and wishing I had a life line to Griff as well. Cesare will close a door in his mind that keeps his longing for his brother just a little further than arm's distance away.
And each one of these suckers, as they always have, start with a fear aura. What must that be like? Undefined terror grips Cesare that can't be explained, and can't be quelled with any of the conventions the rest of us use to confront our fears: a light in the dark, or safety in numbers.
Cesare has already topped out each of his anti-epileptic drugs. There is nothing left to increase, and virtually nothing on the market he hasn't tried. His safety intervention med is a nasal spray, called Medazolam, which has thus far proved worthless. So I pile on the Ativan which makes him sleepy and dopey. (He's just had his eleventh seizure and I've just handed him his second Ativan).
The last time this strange cycle occurred was early November. After increasing his Fycompa, his old pattern returned: averaging two or three seizures daily, usually around bedtime. (My apologies, Fycompa, to anything I have said in the past about your potential side effects that may have offended you).
With the confidence that that strange anomaly had passed and with the advent of the new year we spent some of our Winter Holiday moving me out of Cesare's bedroom. New paint, some new furniture and the plan to order a nifty kind of new pulse-ox that is worn like a wrist watch.
This has been a difficult move for me... a whole different kind of letting go from the tearful goodbye I had just said to Griffin in the fall as he headed for college. And wouldn't you know, Griffin leaves this afternoon to return to college after a month home. Two very different kinds of separation. Two very different kinds of anxiety. I am preoccupied with both.
Last week, Griffin engineered making good on a challenge he had with his brother: when they turned 18 they would get tattoos. They agreed on the Celtic symbol for Brother. They are both quite proud of themselves, and I am quite teary.
Cesare is gearing up for his own loss as his twin packs up to leave today. We've talked about coping and what forms that can take. Cesare says he needs to wipe Griffin from his memory to make the transition. He told me yesterday that he wouldn't be wearing T-shirts for a while. He wants long sleeves to cover up the symbol that represents what he will soon be without.
Cesare has stopped seizing now, and we'll go on with our day. Tonight, I'll be in my bed with my ear close to the baby monitor and wishing I had a life line to Griff as well. Cesare will close a door in his mind that keeps his longing for his brother just a little further than arm's distance away.
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