I never realized the lengths I’d have to go

All the darkest corners of a sense I didn’t know.

Just for one moment, I heard somebody call,

Looked beyond the day in hand, there’s nothing at all

Now that I’ve realized how it’s all gone wrong,

Gotta find some therapy, this treatment takes too long

—-“Twenty Four Hours”, Closer, Joy Division (1980)

I know that it is largely frowned upon in academic and professional communities to get “too personal” within the realm of online writing, but sometimes I feel it is important to drop our guard, let people in, and give readers access. Sometimes, the more personal the better.

I was asked by someone today, “Have you come out as an epileptic?”

It was a strange question. I have never considered myself  particularly “closeted” nor have I ever felt that it was something that I have had to necessarily hide. On that same token, hearing that question, I have also never placed it on the same level as the struggles that people have had with their sexuality and coming “Out of The Closet” in that context. However, after giving it some thought, I came to a striking conclusion: the process of dealing with life as an epileptic can bear remarkable similarities to the process of dealing with living life as a person of alternative sexuality in a heteronormative culture such as ours.

Please do not mistake what I am trying to say- I am in no way trying to say that what epileptics go through is on par with Matthew Shepard, per se. But I live this life every day. It’s no party. It’s the first thing I think of when I wake up, the last thing I consider when I go to bed. It affects everything I do and everything I am. It makes me entirely different from the average person walking down the street. I cannot imagine that this experience is that far from the queer experience. You may be surprised to hear it, but my entire world and life has had to be reorganized due to epilepsy and not everyone is open to it. I never really sat down and thought about it at all. Until today. Then it really blew me away.

Would you be surprised to find out that the reaction that I get from many people when I tell them that I’m epileptic mirrors homophobic reactions? Let’s face it- aside from politics, religious nonsense, and plain old-fashioned stubbornness, homophobia is really just a bad case of not being educated about the LGBT community. Well, when people squirm around me, and refuse to meet my eyes, begin to treat me with kid gloves, or, in some cases, take me off the “date-able” list immediately after finding out about my seizures (it has happened), it’s simply due to not being educated about the disease. In 2012, that makes me really depressed. It certainly doesn’t make it any easier.

OK, I don’t get to live everyone else’s life. And at the end of the day- am I unhappy about this? Not really. I enjoy my life every single day. I have an full and astonishingly brilliant life! I’m training to become a film archivist (my dream!), my film calendar is always full, and my social world is rarely lacking. I’m an exceptionally lucky individual. But being epileptic is difficult and exhausting, both mentally and exhausting. And as my life continues to get more exciting and wonderful, my mind returns again and again to Ian Curtis and my heart aches for him. I wrote about my relationship with Joy Division once before, and said I would return to the subject, so due to the earlier prompt, it looks like I now am.

People like you find it easy,

Naked to see,

Walking on air,

Hunting by the rivers,

Through the streets,

Every corner abandoned too soon

Every time I hear “Atmosphere”, I hear Ian’s pain, so loud, so biting. And to be perfectly honest? I recognize it. I feel it. It reflects my experience. To an extent, it irritates me that I use this song to synthesize my own poorly functioning neurology, but the kinship I feel with Ian Curtis goes a long way. In general, I try not to personalize things but with Curtis…it’s remarkably difficult. Additionally, not knowing about any other public figures with seizure disorders until I began doing research (as it turns out, Prince had epilepsy as a child), he was the one person that I could identify with. Joy Division’s songs, while clearly appealing to a mass audience, really had very specific meaning to me. I believe that Ian Curtis put a good amount of his experience with epilepsy into his music. It’s too present and I can read it too plainly. Indeed, the fact that Curtis was Joy Division’s only lyricist supports that thesis.

At times, even song titles read like the feelings that I have felt since my first diagnosis at 13 and since my condition has worsened after age 30. Tunes like “Atrocity Exhibition,” “I Remember Nothing,” “She’s Lost Control,” and, especially, “Isolation” have all played large parts in the make-up of my epilepsy-marriage to Ian and his own possible lyrical catharsis.

“Isolation” is a really tough song for me. Released a few months after Ian’s death on the album Closer, this song really cuts into what some of the bigger chunks of epilepsy can be, psychologically. When he sings

Mother I tried please believe me

I’m doing the best that I can

I’m ashamed of the things I’ve been put through

I’m ashamed of the person I am 

it always hits me in my gut; knocks the wind right out of me. Whether it makes sense to anyone else or not, the most embarrassing thing I have ever dealt with in my life has been my seizure disorder. It has taken me years to overcome the shame and embarrassment that I used to feel in regards to my disease. Not only did that shame create even more problems for me, but it also blanketed me in the very thing that Curtis sang about: isolation.

Ian Curtis was only 23 years old when he hung himself. People have been arguing for years about what the “real” catalyst for his suicide was. If you listen to his lyrics, it’s all right there, plain as day. But that’s just from my perspective.

I realize that Ian many other problems: depression, familial discord, the lot. However, it would be dense and ignorant not to recognize that brain function is linked to both depression and seizure disorders. Ian’s former band members have come forward in the last few years talking about his epilepsy and painful struggles. Stephen Morris told NME magazine, “Looking back, I wish I’d helped him more. I think that all the time… But we were having such a good time, and you’re very selfish when you’re young. Epilepsy wasn’t understood then. People would just say, ‘He’s a bit of a loony – he has fits.””  According to an article in The Guardian, Bernard Sumner says that, amidst the plethora of problems raging in Ian’s world, it really was the epilepsy that did him in.

“Ian’s problems were insurmountable.Not only did he have this hideous relationship problem, he also had this illness that he contracted at 22. And it wasn’t a mild form. It was really, really bad and it occurred frequently…The epilepsy must have cast a shadow over his future, particularly his future with the band, and his relationships cast another giant shadow. Plus, he felt extremely guilty about his daughter Natalie… I remember him telling me he couldn’t pick Natalie up in case he had a fit and dropped her..Sometimes a drumbeat would set him off. He’d go off in a trance for a bit, then he’d lose it and have a fit. We’d have to stop the show and carry him off to the dressing-room where he’d cry his eyes out because this appalling thing had just happened to him. The heavy barbiturates he was on seemed to compound the situation; they made him very, very sad. I just don’t think there was a solution to Ian’s problems.”

Every bit of that makes perfect sense to me. I can’t begin to tell you how many tears I have shed due to being epileptic. Out of frustration, embarrassment, anger and resentment at my “lot.”

I have had seizures at the movie theater in front of my friends and perfect strangers. I have had seizures at the gym and fallen off exercise equipment. I have had them alone on the street and then tried to get a taxi but found that I was literally unable to speak because my brain was not in working order yet. I attempted to tell the cab driver where I wanted to go and all I could get out were the words for the mall that was near my house. I cried a good amount that evening. Can you imagine not being able to speak? The words were in my head, I could imagine a picture of my house, my street, but I could not tell him where I lived nor could I get words, simple WORDS, out of my MOUTH. I have seized getting ready to go somewhere and had to call someone to ask them if they knew what I was supposed to be doing that night because I couldn’t remember.

Mind you, I have a graduate degree. I am working on a second one. I can have an incredibly detailed conversation about the glories of pre-Code cinema or Sam Fuller with you. I can do a great many things. My epilepsy in no way affects my intelligence level on the whole. But the minute my brain short-circuits, I don’t remember my own name and I become a semi-functional vegetable.

I remember watching Anton Corbijn’s Control (2007) for the first time, and I was overwhelmed.

I had read Deborah Curtis’ book Touching From a Distance a long time previous and had been so hungry for some sort of media engagement that featured an epileptic that I don’t think I ever looked at the book critically. I still haven’t. To tell you the truth, I am uncertain if I could separate myself from Ian Curtis long enough to look at the book critically due to my connections with him. And Corbijn’s movie only tightened the grip.

Ian was on Tegretol. I’ve been on Tegretol (or the generic form, Carbemazepine) for a little under 20 years. They put Ian on Phenobarbitol. They put me on Phenobarbitol as a teenager. It was probably one of the worst levels of hell-drugs I have ever experienced. Phenobarbitol turned me into LINDA BLAIR in The Exorcist. If I wasn’t crying, I was yelling at my baby brother. If I wasn’t crying or yelling, I was sleeping. If I wasn’t crying, yelling or sleeping I was completely and totally irrational and unpredictable. So, being a teenager and irrational and unpredictable anyway, phenobarbitol took me up to 11+. Ian Curtis was in his early 20’s. That’s not far from where I was. When his bandmates talk about his mood swings and his depressions and his unreliability, I cannot help but wonder: was this actual depression or was this the hardcore barbiturate that they had this young kid pumping through his slender frame, multiple times a day? Phenobarbitol ain’t nothin’ to fuck with.

Thirty years ago, they really didn’t know much about epilepsy, let alone the medications for it. They learn all the time. I remember that they had me on a medication at one point when I was 15 years old that I thought was great! It was a hunger suppressant, so I lost an incredible amount of weight really quickly, which I thought was fantastic! Unfortunately, the side effect of this medication for other people was a red blood cell count so low that they died. Nice, right? Needless to say, they’re still working out the kinks in MANY of the medications that deal with these issues. But I think it’s essential when thinking about Ian Curtis to recall the surrounding medical conditions of epilepsy and seizure disorders, because no one knows about them and no one talks about them.

For example- did you know that many of the very same medications that they prescribe  as antidepressants are also used as anticonvulsants or can be used for people with seizure disorders? Most people I talk to don’t know that. But it makes sense, right? It’s all brain chemistry; mixed up in that crazy web of electricity and wackiness between the ears.

I guess the question still remains for me today: how much of Ian’s depression came from a depression disorder and how much of it stemmed from the anti-seizure drugs and simply being epileptic? It’s a reasonable inquiry since I have on the receiving end of both. Who’s to say that if Ian hadn’t suffered from epilepsy he wouldn’t have been completely normal? From what we know, he had been having seizures for far longer than he had been letting on, and from personal experience, that is usually the case. I had little petit mal seizures for an entire year in junior high and never said ONE word to anyone about them. Nothing at all.

Peter Hook says of Ian’s suicide, “The police described it as a textbook case: suicide brought on by depression, well-documented by his cries for help…Unfortunately, we were all too young to understand.” While most of this is true, I would have to disagree about his death being a textbook case. Ian Curtis suffered from a variety of outside stressors, but he was a very young man who had absolutely no one to turn to about being stigmatized by an illness that he never asked for and yet was put upon him. He was involved in a music scene that catalyzed and worsened the condition and yet it was his life. How do you manage this? The pills are supposed to make you better, but they are, quite literally, making you see double, causing mental confusion, possible nausea, and mood swings like you never even knew were possible.

My memory of the drugs they gave Ian were that they made me feel like the girl that I once was had shrunk up inside me and was in the fetal position, looking out, and the world was really really fuzzy. Yet, in that condition, I was still physically functioning. It was a living nightmare. I was lucky: my parents saw my misery and got me off that medication straight away. Our boy was not in that position. Maybe that’s also why I feel for him.

Joy Division speaks to me because I know it, I live it, I am those songs. The themes that he would write about- ideas of atmosphere, memory, time, control– these are all things that an epileptic has in limited doses. I never know whether or not I’m going to be on my way to school and will have to pull my bike over to avoid having a seizure while I’m riding. My memory? Well, seizures control that. And one of the medications I’m on makes my memory not as sharp as it used to be. And time- I have no idea how long my seizures last. No idea at all. I have to ask people. As Ian’s epilepsy worsened, his songs got progressively darker and more tied into all of these themes. They became his only outlet.

Additionally, I don’t believe that Deborah or Annik Honore (the woman with whom he was carrying on an affair just before his death) were able to understand his feelings about having a seizure disorder anymore than he was able to express them. I have only been able to come to grips with and express my own feelings about my seizures in the last few years and I am 10 years older than Ian was when he died. To this day, this is the first time I have written out anything having to do with my seizures or what I go through. Why is epilepsy private, personal, intimate? I don’t know. It’s a stigma. Ian didn’t feel that it was socially acceptable to have it 30+ years ago. I don’t feel like it’s socially acceptable to have it now. It’s certainly not the topic to discuss at parties. Wanna clear a room or stop a conversation? Talk about the seizures.

Some people call epilepsy a disability. I haven’t let it rule or ruin my life. As I said above, I love my life and I’m living my dream. And I consider Ian Curtis to be a strong, talented and gifted icon that was dealt a really rough hand. I believe in my heart that if he had not had seizures, things would have gone differently. I cannot guarantee that he would not have OD’d or something of that ilk, but I am fairly confident that the kind of pain that he suffered in his life would have been much less.

Ian Curtis’ suicide was tragic, unnecessary, and entirely preventable. I wish I could travel back to England circa 1980 and say, “Ian, it does get better.” As cheesy as that current anti-bullying campaign and its ads are, I believe that they’re the truth. Especially in this case. Since 1980, the medications for depression, seizures and all kinds of neurologic therapies have improved by leaps and bounds.

I can only hope that within the next 30 years it gets even better. Not unlike the gay community, people with seizures hurt, feel pain, feel isolated, embarrassed by the fact that out of nowhere our neurology will suddenly control us instead of the other way around. Our lifestyles are different and we have different ways of doing things, but, at the end of the day we’re not different people. Ian Curtis was more talented than a large percentage of the non-seizure-having folks I know, and has been inspirational on the music that has been made since his passing. He was creative, unusual, and gifted. The brain misfirings never changed that.

My biggest fear is that one day I will not be able to write anymore. There. You have it. I have admitted to the larger reading public and strangers everywhere my biggest fear. I am deathly afraid that one day I will have a seizure that is so big that it affects my brain to the point that I am no longer able to function on a writerly or intellectual/academic level. These are the things I think about every day when I take my pills in the morning, afternoon and night. “Please let me be ok today, and let the pills continue to work.”

I used to think that the seizures were gone, then I got older and they came back, and my relationship with Joy Division took on a new meaning. So this is permanence means something totally different to me now. I will be an epileptic for the rest of my life, but it is not a death sentence and it does not in any way shape or form mean that I am a lesser person. If Ian Curtis could be so incredible and fire up that stage, I can do whatever I want to do. He did not have the resources that I have. That shatters me. But I am not Ian. So for now, what it means is that I should move forward with my dreams, keep doing all the amazing film work I’m doing and just dance, dance, dance, dance, dance to the radio…