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US DJ Marches Against Epilepsy (interview)

Reported by JontySkrufff on April 25, 2010

“I have only ever had one seizure IN a club. I was in the VIP room at an old Buzz party where I worked and just had one out of the blue. It sucked, but I was with friends and in good company.”

Making his name helping popularise electroclash in the States via his Washington DC party Sleaze, then later through his nationally broadcast weekly radio show Redux, Simon Pattee (aka DJ Simon) is a well known player on the US club scene, More recently, however, he’s stepped back behind the curtain somewhat, becoming the sound engineer, or bitch’ as he puts it, for an A list US DJ duo. Far too discreet to reveal artist names (at least for public consumption) he’s much less quiet about a medical condition many would keep quiet; epilepsy.

Developing the illness in 2001 (three years after he started DJing) he recently took part in the National Walk for Epilepsy, a fund-raising sponsored stroll through DC. Though one of the Walk’s key goals was to raise money to help address epilepsy’s stigma, Simon cheerfully mailed his entire mailing list for contributions, reflecting his willingness to tackle epilepsy head-on.

I don't mind speaking about it all,” he says, “I'm very open about it.”

Skrufff (Jonty Skrufff): What were the first signs you had that you were developing epilepsy? Did you have a sudden attack?

DJ Simon: “Epilepsy hit me out of the blue. In 2001 I was preparing to fly to the Philippines for the first time for work, meeting with management that I was teaching an application to and it suddenly hit me. I guess I was in a daze but when I came to (regained consciousness) I was still in my chair and there seemed to be quite a bit of commotion around me. I stood up to see what was going on and saw paramedics heading my way with a stretcher. I asked someone what was going on and they said I’d had a seizure. ‘Who had a seizure?’ I asked completely confused. Everyone was standing around me, meanwhile, telling me to sit down.”

Skrufff: What happened next?

DJ Simon: “I went to the hospital and they just took some blood and sent me back on my way a few hours later. My mother and girlfriend met me at the hospital, my boss told me to take a few days off so I went back to the office with them to gather my belongings. When I was there, I started showing them the new website for my Sleaze party, which was just being developed and while standing there flipping through the different pages, I hit the floor again. I next woke up back in the hospital. That was the start.”

Skrufff: Do you know how much- if at all- the condition was prompted by excessive partying?

DJ Simon: “I have no way to tell for sure. I’d dabbled around in my younger years with a variety of party favours but never got that in to any of it. After having a variety of friends who were playing with fire far too much, I had actually gone completely straight edge a few years prior. I didn’t even smoke pot. Lack of sleep can affect me from time to time but that is the only thing I can attribute my fits to in that regard.”

Skrufff: How much did being a DJ prompt people to treat you as if you'd brought it on yourself?

DJ Simon: “I don’t think anyone made any assumptions like that. If they did, it was never brought to my attention. Everyone around me knows me really well. My doctor was obviously cautioning me to get plenty of rest and had concerns about my clubbing career but strobe lights and the like have never effected me. EEG’s are a testing process where they put all of these wires on your head to read your brain wave activity and they try to attempt to induce a seizure using a series of strobe light techniques, but to date, they have had no luck. They have even asked me to stay up for 24 hours and run the same test, but to no avail. What is shitty about that is that I usually have one later that day or the next when I hit about the 20 plus hour mark.

Most people who are epileptic are diagnosed at a very young age. My grandfather on my mother’s side is epileptic and has been since he was five. I was the first grandchild and I remember there being some family concern when I was little that I might absorb the genetic attribute, but 21 years later it was not expected by anyone and it’s very rare for that to develop all of those years later.”

Skrufff: Did you experience any guilty feelings that you had somehow caused it yourself?

DJ Simon: “I have no regrets about anything in my life. We all have ‘what if things were different’ thoughts from time to time, and wonder where we might be in life had we made other choices. It’s just not possible to pin something like this down and I don’t blame myself for its onset. I was never a reckless or indulgent person so I’m pretty sure it’s not my fault. Just one of those freak things, ya’ know.”

Skrufff: What implications has it had on your life; on clubbing and DJing?

DJ Simon: “I’m really lucky that the lighting aspect of the syndrome doesn’t effect me more than anyone else in the world. I just need to make sure I get a good 6 or 7 hours of sleep in every day (man, I do love sleep, so no arguments from me there). And I also need to do my best to avoid getting stressed out.

One thing that has the potential to spook people in a club environment is an instant rush to assumption that I am having a drug overdose or something. I always let new promoters I play for know, so, God forbid I black out, they know not to freak out and can squash any rumours instantly about what just happened.”

Skrufff; Have you had seizures when playing?

DJ Simon: “It happened once when I was gigging in St. Louis as a driver was taking me to the gig. One of my best friends was with me and it was really small so no big deal there. The other sucked hard. I was in Miami at the Winter Music Conference about three years ago. I had stayed up all night and watched the sun rise with my girlfriend. She was flying back to Washington early that day and I was playing in the afternoon. I took a short powernap and after getting some lunch to go and walking to a gig I was playing, while in mid step- I blacked out and fell on my face on Collins Ave. My sunglasses split my forehead open, requiring 12 stitches. It’s the only time I’ve ever actually hurt myself from having one. Thank god for Miami surgeons though. I barley have a scar. I’d have to really point it out for you to actually notice.”

Skrufff: How do you actually 'fight it off'?

DJ Simon: “For the last few years, it’s just been a matter of trial and error with different medications: either increasing the dose or trying new ones. Mine has been difficult for them to pin down but it’s 10 times better than it used to be. I take two pills twice a day and it seems to be doing the job. I’m much better than ever before, though I still have a small fit here and there. Grand-mal’s have subsided about 90% over the past 12 months. It’s something to be excited about but I want this shit to go away 100% forever. It’s really quite obnoxious and makes many things (transportation for instance) a huge pain in the ass.”

I’m really looking forward to the Obama Health bill setting in. I just want the ‘Pre-Existing Conditions’ clause set up if nothing else. Having health insurance is expensive and having this condition makes it worse. Being an independent videographer and musician leaves me to fend for myself and I’d hate for something to happen and put me in to bankruptcy status. It happened to a friend of mine in a bicycle accident, he racked his head open. All I can think of is ‘you unlucky bastard.’ My heart goes out to him anytime I think about it. Shit can get rough. “

Grand mal seizures: ‘Once the convulsions begin, the seizure must simply run its course. No attempt to restrain the person should be made because of the risk of injury to either party. Instead, reduce the risk of injury by placing something soft under the person's head and try to prevent the person's limbs and body from bumping into walls or other objects . . .’)

Jonty Skrufff ( Follow Jonty on Twitter