There are risks with any major surgery. Even with minor surgery.
My neurologist wants me to get a vagus nerve stimulator implanted beneath my pectoral muscle, which is just below my breast. “A slight scar,” he says and runs his finger along the side of his arm, which would be where the side of my breast is, except on him, of course, it's just flat. Where he has no breasts. Which means that I would have yet another scar.
You see, I have had melanoma – multiple melanomas and dysplasias so that means that I have one very big scar on my shin where they took out about nine tumors, the scar by my groin where they removed the grape-like lymph nodes, the two (or is it three?) scars across my spine in parallel lines from excisions, the scars on my belly from pre-cancerous lesions, and then the puckered scars on my thighs from pre-cancerous freckles.
No more scars. Thank you. Between the already existing scars from adulthood surgery and childhood accidents, I think I have enough already; my friend Ian tells me, "Chicks dig scars," but since right now I am not into chicks (not in that way anyway), I don’t dig scars as a come hither thing anyway. And even if guys dig scars, I don’t dig scars.
Maybe they lend character, right? Yeah, come and talk to me if perhaps you have as many as I do, then we’ll talk about character. I have enough character by now to last a lifetime. After what I’ve been through to get the scars, I’ve built up plenty of character. Thanks, but no thanks. Perhaps you feel otherwise. I'm not saying by any stretch that I have the most scars, only that for me, I feel I have had enough. This isn't vanity, it is tiresome. Wait — let me revise that. To some extent it is vanity, I suppose, but not in any ordinary sense; I just do not wish to be scarred for life in any way — literally or figuratively.
As to my neurologist's vagus nerve stimulator – the electronic device with a wire that runs all the way to the brain and sends a spark when the brain misfires – I think that putting an electrical device that stimulates and regulates the brain is perhaps not such a great idea; in fact, I think it's a dangerous idea – in my book anyway. Yes, I may well be wrong. I read a great deal that tells me that I am wrong, but then again, it is, after all, my brain. You cannot electrically stimulate the brain and 'hope' that it will control seizures. What if it causes seizures? How do you know with utter certainty that it does not do the opposite of what it is supposed to do?
In my book, you can offer me, a writer, no real guarantee that it will do what it is supposed to do. I do not like screwing with my brain. I already have aphasias – is it already not ironic for the poet, the writer, to lose her words? I am terrified of losing more than I already have and perhaps I am making the wrong decision here. I may well be — maybe I am risking or increasing my odds of status epilepticus by NOT getting the vagus nerve stimulator; entirely possible. But I do not like the idea, and I do not like the idea of having a scar along the left side of my breast. This much is vanity… no, I do not want that. Sorry. I just don't. Do you blame me? And if you do, then I say, so what?
For example, my niece has a vagus nerve implant. She is in a constant state of status and has been for years even before she got a vagus nerve stimulator (though she has Lennox Gastaut epilepsy – a different form than mine, but still). She did get a vagus nerve stimulator but in her case, it was almost as if they felt they would try anything – after all, why not try anything if she was in a state of constant status, and I quite agree.
Cousin E. tells me, “It worked for a while, until the battery died and then we changed it, and then it seemed to stop working, or not work as well.”
Maybe her case is just a tough one – I know it is, but if the vagus nerve stimulator is supposed to improve her condition (or my condition) I see no evidence of this in someone that I truly love. Moreover, what if this electrical wire that fires affects my writing ability, since it will be plugged directly to my left temporal lobe, the origin – or locus – of my particular seizures and the seat of all of my creativity?
So take this and the fact that I am presently working on three books, with one already under contract and a second, Grand Mal (gee, what could Grand Mal be about, but a memoir of living with epilepsy and what it means to limn two worlds – the 'this' world and the 'that' world of the epileptic, which is entirely different), in the latter stages of progress.
Grand Mal is finished and I am editing it and have already gotten great feedback, so imagine the feedback it will get once it is edited (these publishers have asked to see it again in a linear format) but what if the vagus nerve implant impairs my ability to do this?
More, what if the implant impairs my thinking enough that I cannot write the book on Lewis Carroll that is now under contract with Continuum Books – a pretty large press – and isn’t it rather ironic that Lewis Carroll also had epilepsy? He didn’t have a vagus nerve implant, but then, they didn’t exist in his day. I wonder, would he have gotten one if he had the choice or would he have simply said "Oh nonsense!?"
I’d love to speak to him about it — I would wager he would say “No.” How could he have written Alice in Wonderland without his seizure states, for I am quite sure, as someone with temporal lobe epilepsy, that in the book there are just too many things that he writes of that mimic seizure states — the distortion of time, the shrinking and growing.
Carroll's Cheshire cat how smiles at Alice and says, "We're all mad here…" No, I am almost certain Carroll could not have written much of what he wrote without his epilepsy as the motor behind much of his work. How funny then that Carroll, after his death, was diagnosed as schizophrenic, multiple personality disorder, manic depressive, a drug user (LSD in particular) and more, when in actuality, the actual proof (in his lifetime) is right there in his very own diaries that say directly that he was actually diagnosed with temporal lobe epilepsy by his own doctor. The word epilepsy is used. He was treated for it.
Carroll had seizures which he wrote of in great detail, certain that the seizures were brought on by stress. So then why is it that so many biographers have simply overlooked this fact? It's interesting, isn't it? One looks forward to setting the record straight – the proof is there. The documentation is simple. One need only search – if I learned one thing at The Atlantic Monthly it was to check my facts and do my research, and this I have done. It amazes me to no end that of all of the books on Carroll, this simple fact has been overlooked time and again. How very odd.
My doctor can offer me no real guarantee about the vagus nerve stimulator other than he thinks it is a good idea, that it will "likely help," He thinks maybe it can, but maybe is not a guarantee. It’s still a maybe. I have real people, also epileptic, that I can point to and say, "This did not work as expected." Isn't that enough?
I have accepted the fact that I am epileptic and will have seizures for the bulk of my life. Maybe I'll have a seizure that will kill me one day. Maybe.
Who knows? Maybe I'll die of something else. That's also possible. Life is nothing but ironic. So who knows. But the point is this — I have long made my peace with epilepsy and feel that yes, many not so great things come from it, but also, many other good things have come from it – such as the way I see the world, the way I write with a different skew, how I see things differently, my passion, a certain intensity that can be problematic but can also be great at times and accounts for a real and fierce loyalty to those I love as well as an intense morality which may or may not be good, but by and large has kept me on the straight and narrow.
Maybe you disagree, maybe you are even a temporal lobe epileptic and disagree, but by and large, I think I'm doing okay and even the giant of an neuroscientist Verne Caviness, who my present neurologist studied under, agreed with my assessment – yes, there are some good things; there are certain benefits to the epileptic mind. He tells me he has read my work.
One hates the term “mad genius.” Some people do anyway. It doesn’t particularly bother me. It bothers some because they feel the line is too thin between genius and madness, but who is to say that it is not? Genius is a slippery thing – you have to be a little mad to be a true genius, I think. You have to attempt what everyone says is impossible and do and to do that, you have to be a little zany, to say the least. Ask John Nash. Hell, ask me. I ran an imprint, a book publishing house that everyone told me would “flop” because I was publishing (in America) books in translation and in paperback at that and expecting them to be widely reviewed and to sell. It would never happen, I was told. “Watch me,” I said.
Every book on my list got a full New York Times review (of which I am intensly proud and should be, for that took a lot of work). Lumen Editions was covered by some of the biggest magazines in the publishing world and I was profiled by the biggest magazines as well, earning the moniker the ‘enfant terrible’ who had ‘taken the publishing world by storm.’
Is that good or bad? Does it have to be either? Do we have to really judge it that way? I don’t think it’s either good or bad. It just was. Lumen was successful and because of that so was I, and yes, I was the enfant terrible and perhaps now I am the enfant maudite – the damned child, and perhaps epilepsy is a part of that.
I was only in my twenties when I started Lumen and was Editorial Director of this publishing house and yes, I did what I was told could not be done – so they said. I was a brat. I was mad. It was genius. It takes a certain madness to attempt the impossible, and a certain genius to pull it off. I had Saul Bellow on my board — everyone wonders how that came to be — I simply called him on the phone and asked to meet. It really was that simple. There is no genius in that. There may be gumption, but no genius. That was ‘mad.’ It was also ‘genius.’ It also, for the record, simply worked. In this way, it was pretty banal. So you tell me, maybe ‘mad genius’ means nothing. It’s just two words strung together.
These days, my neurologist’s concern is this: that if I go into status epilepticus then perhaps I may suffer more brain damage, since last time I had amnesia for so long and have suffered some permanent irreversible effects, such as now I'm dyslexic whereas before I was not. I also sometimes drool out of the left side of my mouth when I lie down, but this has tapered off. I tend to fall more to my left side only where I have some scar tissue in my brain and what they call mesia lesions, and I have nystagmus – a rapid involuntary movement of both eyes, which affects how I see things so sometimes I see blurry or worse, I see double (dipolopia or sometimes I see things like a flickering movement like in high school when a reel of film got stuck and showed over and over again – this happens a fair amount). My neurologist and I spoke a lot today about these things, and he noted all of them and they're all physically verifiable and testable, so they are there – he can see them. Who could make this shit up, right? And who would want to? That would truly be sick. Unfortunately, I am stuck with this, but again, I'm okay with that by now.
But again, I don't really have a problem with it anymore. I have made my peace with this. It is my everyday life. Like any environment or any floor that you’ve paced, you just know it.
For my husband, this is harder to accept. He, like my mother, does not want to accept that I have epilepsy. Or he has, but he is so afraid that I'll die from it – perhaps fear of abandonment – that he would do the vagus nerve thing if he had his way, though he understands as a writer why I am reluctant for he, too, is a writer. He also knows that if I go into status and I have no "meaningful recovery" that I do not wish to be kept alive if I cannot write anymore because that would not be "meaningful" to me. I don't want to live in a world where I cannot write as I do now. Writing, editing is my life. We all define meaningful differently. I cannot say what is meaningful for you. Please don't tell me what is meaningful for me.
I have a good therapist as an adjunct to my neurologist to discuss epilepsy issues with and I have gone over this with her and she understands where I'm coming from. Look: you make your peace with this.
Epilepsy, particularly temporal lobe epilepsy, is both good and bad. People with TLE tend to have pretty high IQs so are hardly mouthing idiots who cannot make an educated decision, so it is important to let the TLE patient make his or her own decision. Some doctors say they have read my work online and in print about epilepsy and other matters and found the work to be very astute and insightful. It really gives them a real clue to the epileptic mind and one that was lacking before. Good. That’s good. It bodes well for my book Grand Mal. Perhaps others, too, then will see. It’s not a technical book or a book about epilepsy per se. It’s a book about life – any life. Just a memoir seen through a different lens, that’s all. It is like the book by Kay Redfield Jamison, a memoir of what it means to see the world the way I see the world every day, which is different from how you perhaps see the world.
I also told my neurologist about my dreams in which I am trying to 'outrun my epilepsy' and about my cousin Evander who usually saves me usually but lately, nobody saves me, including Evander, and I just die, which for me isn't too bad, but what happens in the dream is that everyone around me (because I have some consciousness after my death) is absolutely devastated and I care more about them than I do about myself in the dream. Oddly, the person the most upset in the dream is Evander… not my own husband.
Clearly, this is a misperception. Mark would be the most devastated. I am almost sure of this. I must be. Yes?
I tell my neurologist about the dream in which Evander saves me time and time again. That my cousin extends his hand and voila! I am saved from my epilepsy and pulled to safety. My doctor tells me that my dream is more vivid than most. (“I am being chased down Madison by 10,000 volts of blue epileptic electricity,” I tell him, “then I see my cousin who reaches for me from a black helicopter and pulls me to sudden safety and I am both saved and absolved.”)
This dream fascinates him. He says many patients with temporal lobe epilepsy have dreams of being chased by epilepsy or trying to escape it, but my dreams are particularly vivid and interesting. But then, I am a poet. I ask him, what does it mean that my cousin is no longer rescuing me? I tell him, most recently I have this recurring dream that Evander is not there, that he is not rescuing me in any variation of the dream. He says, “It means you are having issues with your cousin. I suggest you work them out.”
He did ask if I was worried about dying, and I told him yes, of course, who wouldn't be? Walk a mile in my shoes, right? It's one thing to say, I could get hit by a car, but another thing entirely to know that the car has hit you before and may be rounding the corner again and will certainly hit you again in your lifetime. That is scary. So yes, I do live in some fear. I know that car is coming; that is the key difference here. My car is a certainty, not a maybe.
We do what we can. We upped the medicine. We added an 'emergency' medicine to help stop grand mals if we can, which my husband will hold and some of which I will have on hand and if I have any kind of aura, I must immediately pop one. The aura I know pretty well now (it changed from before — now I feel dread, and real fear, an echo, and then I smell roses – specifically Moroccan rose attar – don’t ask me why, but it’s that specific – and I have aphasia).
As soon as I smell roses, I take the pill. That is what he said to do. So I am getting that script filled tomorrow. That is important to have on hand. I doubt I'll need it often, but when I do, it is my "hired thug."
This guy is good. He studied under Verne Caviness, as I said – my first epileptologist who is the best in the country, if not the world. He's built his reputation on his research and always took a keen interest in my case. I still have his notes and papers. I was always the 'classic case'.
In a way, oddly, it's an honor (of a strange sort) to be "so" epileptic – if you have to be, hey, you may as well be the one that interests the doctor most and who is successful, which is rare for someone with classic case of TLE and intractable seizures, they tell me. I should not be so successful, they say. I didn’t know this. Maybe if I knew, I wouldn’t have been.
The doctor says that all of the tests prove that I should NOT be so successful and YET… Evander is always sort of amazed too, and I’m not sure if I should be insulted or not. Is that praise or an insult? I can’t tell. I can never tell with him. So should I be proud?
Maybe that sounds funny to you, but just think of it for a minute. Objective EEGs and MRIs say I should by rights be a 'shut-in' and yet I produce and more, I succeed a great deal – not just a but, but a fair amount – I produce books, articles, I publish, I work when I can, and I am successful in my relationships. To have my neurologist say that I have given him a keen view into the mind of a temporal lobe epileptic, well, that is the best review I've ever gotten. Imagine that. Can you? It's really quite an honor.
I hope this makes some sense to you. It may not. I am not Van Gogh. I’m not that good. But then, he never got the recognition he deserved when he was alive — things take time. People, especially epileptics, are often misunderstood. They are seen but not seen. Maybe they see without seeing. I often think that. You see but do not see. People look right through me. They see me but do not see. Maybe I do not allow them to see, as if I live behind an impenetrable glass façade as a protection or veneer of sorts between me and the outside world. While I say that, I write and I try to let you in. This then is my attempt. Please accept this as an offering. I'm trying hard to explain. I hope that in some ways I have succeeded.
Words make me brave. It’s easier this way.
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