epilepsy

#594: St. Anger

GETTING MORE TALE #594: St. Anger

As a half-Italian, part-German, part Scottish guy, I was born with a fuse.  Sometimes that fuse can go off.  Nothing makes me angrier than when my wife, who has epilepsy, is told to “fuck off” because of her need to be away from flashing lights.  We’ve written extensively about epilepsy and our experiences, good and bad.  We are very open about it, happy to answer questions and eager to educate.   So when I hear that my wife had a seizure at the mall because of flashing lights and a guy who told her to “fuck off” and “stay indoors”, I feel like I could explode!

Here’s what happened.  Our wedding anniversary is August 31.  We had a nice dinner booked at Borealis, our favourite local eatery.  Jennifer went out to the mall that afternoon to get some things we needed for the weekend.  At the Walmart checkout, there was a child with those shoes that have flashing lights in the heels.  I don’t understand the need for those shoes.  At night, sure, I get it.  In a brightly lit Walmart, they’re a hazard to people prone to seizures.  An actual hazard as real as a slippery floor.

My wife asked the closest lady if that was her child.  She said “No.”  But it actually was her child.  Jen covered her eyes as the kid danced around the checkout aisle with the flashing heels.  She asked the lady to tell her when the flashing stopped so she could uncover her eyes.  The lady said it stopped.  She opened her eyes and the kid was still dancing and the shoes were still flashing.  She covered her eyes again.  She was getting upset.  Suddenly the lady’s husband showed up out of nowhere and began berating my wife.  He told her to “mind your own business”, that she should “fuck off”, and “stay indoors” if she had a problem with the shoes.

And so, she had a seizure in the checkout.  She doesn’t remember anything after paying for her things.  She remembers telling the cashier that she was probably going to have a seizure.  The next thing she knew is that the paramedics were there and she was in an ambulance.  I will give Walmart and the mall credit for being proactive about this.  They know my wife (unfortunately from past seizures) and they have my phone number on file.  They called me immediately.

I took Jen home and she had a good rest.   We didn’t have our dinner out that night.  But we had a great dinner in, and a lovely anniversary at home.  We went out the following night instead.

Here’s the kick in the nuts.  At the exact time I got that phone call from the mall about my wife, I read the story about how our friend Kenner Fee, who has autism, will not be allowed to bring his service dog to school. It was a painful one-two punch.

The anger simmered in me.  I came home and keyboard-warriored my way around Facebook, to the ignorant trolls on the Kenner Fee threads.  I wrote a few zingers, and before I knew it, two hours had gone by.  But by the end, I wasn’t angry anymore.  It might not have been the healthiest method of anger management.

I think there are two really healthy ways to let the anger out.  They are music, and being physically active.

I like to kill two birds with one stone.  My favourite thing is to put on something fast and heavy.  Metallica works as a go-to.  Testament, even Sabbath, they all work.  Hit play, turn up the volume.  Then I just fucking thrash.  Air drums, air guitar, headbanging, whatever.  Just physically moving with the tunes.  Air drums work fantastic for this.  Lipsynching helps.  Or, sing along if you’re not too self-conscious.

“And I want my anger to be healthy” — Metallica

I remember when I was younger, there was this one girl named Tracy that I really liked.  But she just kept me hanging along for months.  One night she had a friend of hers crank call me, pretending to be somebody from my history class that liked me.  I fell for it and got crushed.  And I was pissed off.

The music that came in handy that time was Motley Crue.  “Primal Scream” might have been their heaviest tune at the time.  The lyrics were in sync too.  “You just got to scream!  And shout!  Let that mother out!”  And I believed that.  Sometimes you do have to let that mother out.

Whatever you do, do it healthy!  I recommend a solid soundtrack of heavy metal to go with it.

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#571.5: Aaron Lebold BMR – Diagnosis

New guest Aaron Lebold has launched his own site on Medium!  His site, much like Record Store Tales/Getting More Tale, is his memoirs.  Aaron will still be back here doing guest shots — he’s already sent me his newest one.  I wanted to post his most recent story from his own site here because it has personal meaning to me.  Regular readers here know that my wife has epilepsy.  It has been the biggest challenge ever thrown at us.  His story reminds me of ours.  Aaron was also the first person I ever knew to have seizures, although I never saw him have one.  

Diagnosis

As I had mentioned, the teacher I had for Grade six was the same teacher I had earlier in school. This was also the same teacher that went to my mother to express concerns about my attention in class. I held a pretty big resentment towards her back then, as I felt she was saying that something was wrong with me.

One day in school, my mother came and picked me up. I didn’t know where we were going, she just told me I was going to have some tests done. We ended up at a doctors office where they attached a lot of wires to me, and put me under a pretty intense strobe light for a few minutes.

The whole process, even though at the time I really didn’t understand it, already was solidifying in my head that I was different, and that something was wrong with me. No other kids that I knew of had to go and get this type of examination.


…read more at medium.com/@aaronleboldbmr

#560: Seize the Day

GETTING MORE TALE #560: Seize the Day

It started in early 2008.  It probably really began much earlier than that, but January 2008 was when I knew something was very wrong.

Jen and I were looking forward to getting married in August.  She was still living in Brampton, and coming to visit me in Kitchener on weekends.  Things seemed fine, until they weren’t.  She seemed tired a lot.  She slept a lot of the days and was up until late in the night.  She seemed depressed.  Then one day I noticed something really, really odd.

We used to enjoy playing Nintendo Wii all the time.  Her favourite game was called Find Mii.  It was a simple “Where’s Waldo” style of game.  You had to find certain people in crowds.  Jen was the master of Find Mii.  I saw her finish the game a few times.  She was unbeatable and had several winning strategies.  There was one level where you had to choose a particular Wii character, and then a few levels later, you would have to identify that person in a crowd scene.  It made sense to pick a character who stands out in a crowd, like one with a colourful hat.  When Jen hit that level she picked the most generic character to find later.  I thought that was odd.

Find Mii

“Why did you pick that one?” I asked.  “That will be hard to find in a crowd.”

She didn’t answer.  She didn’t even notice I was speaking.  I just sat and watched her.  She continued playing.

When she got to the level where she had to pick out the character she had chosen earlier, she was very confused.

“What?” she said.  “I didn’t pick anybody yet.”

“Yes you did,” I answered.  “Don’t you remember?  I thought it was strange that you picked such an ordinary looking character.”

“No I didn’t…” she answered but there was worry in her voice.

I had my suspicions.  I got with her parents and we eventually talked her into going to see the doctor.  She was very resistant.  I can understand this.  Nobody likes finding out there is something wrong with them.  It’s frightening.  But so is watching someone you love suffering.

Nobody was particularly surprised when she was diagnosed with epilepsy.  It fit what we were seeing.  What I had witnessed was what the doctor called an “absence seizure”.  I call it “zoning out” because that’s how it looks to an outsider.  It looks like someone has completely spaced out, staring at nothing.

I thought, optimistically, that a neurologist would put Jen on some medication and she would be OK.  Most people are.  I had a friend who also had “zone out” seizures, but when he took his medication he was fine.  When it comes to Jen’s health I always try to be optimistic.  It could, after all, have been a whole lot worse.  Unfortunately my optimism was misplaced.  This was not going to be an easy fix.

There have been so many ups and downs since that day in 2008.  From the happiness at finding a neurologist, to the despair of side effects and pills just flat-out not working.  From people who don’t understand and mock epilepsy, to accidents and injury.  There have been so many.  These incidents have taken their toll not only on Jen, but on me.  People forget that the role of the supporter is no easy task.

As 2008 went on, the wedding loomed closer.  Jen prepared to move to Kitchener and start her new life with me.  One of her former co-workers at Brampton Transit thought epilepsy was terribly amusing.  “Wouldn’t it be funny if she had a seizure at her wedding!” one said, not knowing she was overheard.  As if getting married and moving wasn’t stressful enough!

But we made it.  We had an awesome wedding, and no seizures.  We were very fortunate to be surrounded by the best of family and friends.

Jen moved to Kitchener and three months later had full time employment with Research in Motion, aka Blackberry (before they went tits up).  She worked really hard and was very proud to get that job, and rightfully so.  One of the perks to working there (of many including a custom R.I.M. Monopoly board that we treasure) were their company concerts.  They had thrown private parties featuring Aerosmith one year, and the Tragically Hip another.

Their next employee concert wasn’t a private one, but still free:  U2.  U2 had signed a big endorsement deal and were on TV every night advertising Blackberry phones.  Jen was very much looking forward to seeing U2, but with their light show, could she even go at all?  Imagine her heartbreak when her doctor told her it was very unwise to go and see U2 in concert.

Concerts in general were a problem.  She hasn’t been able to go and see one since we saw Russell Peters early in our marriage.  We tried to see the Trailer Park Boys too.  As soon as cameras started flashing, she had a seizure.  She was taken out in a wheelchair and we didn’t see the rest of the show.  Movies were also impossible.  We had to leave The Muppets before the show even started.  It has been difficult getting used to what we can and cannot do with her epilepsy.

She cannot drive.  But she has to get out and have a life.  Staying inside all day is a sure recipe for depression.  She does her best.  She takes busses, taxis and Uber.  Unfortunately seizures can happen anywhere.  Over the last few years I have received dozens upon dozens of phone calls telling me that my wife had a seizure on a bus.  Off to the hospital we go, where we’d wait several hours for a discharge.  Now, if she is able, she tries to insist on not being taken to the hospital.  They cannot do anything for her there.  We know this from experience.

Unfortunately seizures on a bus sometimes mean falling on a bus.  Jen has had so many injuries from seizure related falls over the years:  concussions, twisted ankles and knees, and a fractured knee.  She’s no longer able to walk without assistance.  When on a bus, she has to fight for a disabled seat.  If she’s not seated on a bus, it’s not safe.  And too many entitled children (and adults) refuse to move for her.  A couple weeks ago she was told to move from the accessible seat to make room for a bloody shopping cart.  An inanimate object.  It is frustrating.  When she falls, it is heartbreaking.

One evening (December 11 2011) after a bus seizure, one of those entitled kids (old enough to know better) thought he needed to take pictures of my wife on the stretcher for his friends.  He is lucky that I don’t believe in physical confrontation.  If I did, there would have been two people on stretchers.  Jen’s mom said, “What is that kid doing?”  I went over to speak with him as he was walking away.

“Hey!  What are you doing?” I shouted.  He ignored me and continued to walk away.  “Hey you!  What do you think you’re doing!” I repeated as I followed.  For a second time he ignored me.  Once again I shouted, “You, taking the picture!  What do you think you’re doing?”

“Taking a picture for my friend,” he answered.

“Why, because it’s really funny?” I asked.

“What do you care?” he retorted.

“That’s my wife!” I said.

“I didn’t take a picture of her face, why are you being rude?”

Rude?  Seriously?   “I don’t care!” I yelled.

“Fuck you,” the little disrespectful dink said, and walked away.  I returned the sentiment, but I could not believe it.  I’m the rude one?

When she’s taking public transit now, we have a routine.  When she is out on her own, she texts me every 30 minutes to check in so I don’t have to worry.  When she can’t get somewhere because of an emergency vehicle with flashing lights, she can text me and we can figure out what to do.  Aside from the falls and injuries, we have had some scares.  I once witnessed her almost wandering straight out into traffic while picking her up from work.  She’s had her shopping bags ripped off at the mall.  She’s had people point and laugh because they think she’s walking around dazed from drinking too much.  We have had to develop thicker skins.

What about all the doctors and specialists?  Her first neurologist couldn’t figure out what was wrong with her and dropped her as a patient.  Finding a neurologist is hard. There are no neurologists here in Kitchener.  You have to go to Mississauga, London, or Toronto.  Eventually we did the only thing we had left to try:  Go to an emergency room in Mississauga where they have neurologists, tell them this girl keeps having seizures, and she needs to see one.  It was her family doctor who instructed us to do this.  Of course emergency didn’t want to deal with that, but that was the only option we had left.  They changed their tune when we told them that she had a seizure right there in their waiting room.  Now we have a new neurologist, and he is in the process of putting her through a battery of tests.  Surgery is the option on the table, but there is a medication we haven’t tried yet that we are going to ask for:  medical cannabis.  That might be the miracle cure we are still hoping for.

In the meantime, we continue to fight on.  We take inspiration from figures like Prince and Neil Young, both epileptics who overcame their illness to perform for millions on stage.  We try to find the humour in life.  We have to.  We don’t have a choice in the matter.  With that in mind, I’ll leave you with some of the epilepsy moments we have been able to laugh at.


When Jen comes out of a seizure, her senses all seem enhanced.  Her vision can be like looking at the world through binoculars.  She can see incredible detail and very vivid colours.  After a seizure the world seems vibrantly bright.  And unfortunately for her, sometimes the first thing she sees after a seizure is my face.  So I can’t help but laugh by some of those post-seizure observations she’s made:

  1. “Wow, your beard is WHITE!”
  2. “Your nose is pointy…and triangle shaped!”
  3. A variation of the above, “Your nose is pointy…and tear-drop shaped!”

I have a glow-in-the-dark Albert Einstein T-shirt that I love.  One night after a seizure, it was glowing away in the dark.  That’s when she observed, “Your tummy is glass…on fire!”  I guess that’s what glowing Albert looked like in the dark!

We will continue to fight this disease, and we will continue to try and see the light side of things.  It’s the only way.  If we didn’t try to laugh at it, it would have beaten both of us by now.  That’s not going to happen.  We have worked and fought way too hard since 2008.

In the meantime, we will continue to raise awareness.  Do you or your kids have any articles of clothing with flashing lights?  Do you take flash photographs in public?  These things can, and will, trigger a seizure.  Try to be mindful of your surroundings and the people around you.  And please, if an epileptic asks you to stop taking flash photos, just turn off your flash.  Don’t tell them to “fuck off” because “that’s not my problem”, as we have been told recently.  Be a good person, and do your good deed for the day.  Do your part to stop a seizure before it happens.

http://epilepsyontario.org/

#555.5: A Short Visit to Sonic Boom

GETTING MORE TALE #555.5: A Short Visit to Sonic Boom

Yesterday I took Mrs. LeBrain to Toronto to see a neurosurgeon.  It was a great meeting; very positive, but we will get more into that in a future tale.   (Look for an upcoming Getting More Tale story called “Seize the Day” if you want to know more.)   After the meeting with the doctor, she had some tests.  I didn’t need to be around for the those, so with a couple hours to kill, I went down to Sonic Boom on Spadina.  I was accompanied by Mrs. LeBrain’s Mom, who insisted we cab to the store.  It was a rainy miserable day outside.  Wet, cold, windy and unpleasant.  The cab ride wasn’t unwelcome.

I’m glad I shaved my beard down to a goatee the other day, because almost every dude in that store looked the same.  Bearded hipsters buying vinyl, left right and center, lookalikes all!  I tuned out the background noise and focused on the cool.  Upstairs they had two colouring books I almost considered getting.  Do you know anyone who is a huge fan of either James Franco or Benedict Cumberbatch?  If so, I am happy to report that Sonic Boom had colouring books of both.  (They also had Star Trek and Star Trek: The Next Generation.)  I spied the new Mastodon among the new releases, but headed downstairs where the real treasures usually lay.

Although I put in a Herculean effort, there was little to be found.  Maybe I have too many CDs, because everywhere I flipped it seemed to be “got it, got it, got it, got it…”  Aaron asked me to look for Danny Michel and a few other titles.  Nothing to be found.  I was struck by how just about everything seems to be reissued on vinyl today.  The Spice Girls’ first album, Spice.  I fail to comprehend.  It doesn’t compute.  I considered buying some Kiss reissues, but I didn’t really want to come home with something I already owned.

With some persistence I did liberate three titles:

  1. The Sword – High Country (CD, used, $9.99)
  2. Queen – The Game (2 CD remaster, used, $9.99)
  3. Rush – Agora Ballroom, Cleveland Ohio, May 1975 (vinyl, new, $32.99)

The Queen set was in the recent arrivals, and that is a nice score.  I’m nowhere near complete with my Queen remasters, but when I can pick them off one by one, used?  That’s the best way.  The Rush on the other hand is something of a chance I’m taking.  This is a radio broadcast vinyl, and I’ve never bought one of those before.  They had several available.  I don’t have anything live from Rush in 1975, so that was the key factor.  Also a non-album track:  “Bad Boy”, a Larry Williams cover.  180 gram coloured vinyl to boot.  Should be good times.

Not a knockout shopping excursion, but not a waste of time either.  We walked back to the hospital (although Mrs. LeBrain’s Mom would have preferred a cab) and got soaked, but it’s good to stretch the legs when it’s a long day of driving and sitting.  Besides, we enjoyed looking at the Toronto scenery.  The fruit and vegetable markets smelled great.  They even had bonsai trees.

Back in the hospital waiting room, I was able to do a little research for my Kiss Re-Review series in progress.  Guess which album I have to write up next.

I don’t want to use the word “disappointing” for this Sonic Boom trip, because I am very pleased with my new albums.  I told Uncle Meat I wanted some more The Sword, and Sonic Boom delivered.  I’m more surprised than disappointed that I was only able to scrounge up three finds this time.  Every visit is different, and I’m sure that next time I return (either in the fall with Aaron, or sooner for more tests) it will be another story.  Sonic Boom is still an absolute must for any music fan visiting Toronto.  Don’t miss out, and be sure to check out the new arrival bins.  They are often the key to many great finds.

As always Sonic Boom gets 5/5 stars.  And so does Mrs. LeBrain for being a tough-as-nails trooper.

 

#359.5: Adrift

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RECORD STORE TALES MkII: Getting More Tale
#359.5: Adrift

I woke up this morning thinking it was Thursday. I was convinced of it. Wishful thinking only. It’s only Wednesday and Mrs. LeBrain’s still got a long stay in the hospital ahead. Bachelor living isn’t as fun as I remember it from my single days.

I haven’t been able to get motivated to write music reviews. I managed to do an EP review last night, barely. I had disc 2 of  Queen Forever on in the car, still. Disc 2 is almost done but I think I’ll stick with Queen for a while. Freddie really helps brighten the mood.  In particular, 80’s Queen.  Perhaps tomorrow I’ll listen to The Game.

As far as the hospital goes, Jen realized yesterday that she forgot her USB cable for her mp3 player, so she currently has no way to charge it. She can still get her rock on with Youtube on her laptop, or by streaming 107.5 Dave FM with the Corus app on her BlackBerry. Forgetting the cable is just one of those annoying things that serve to make her hospital stay a little more aggravating. It appears likely she’ll be there another week.

I’m heading back to Toronto this weekend, and I’m planning a record store shopping trip to go with it.  If life gives you lemons, make lemonade!  It’s too bad Jen has to stay in, but she’ll be home soon and pestering me to do laundry again before I know it!

*FYI, I did know that The Thing AKA Ben Grimm was Jewish.  I didn’t know any of the others though!

#358.5: On the Road Again

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RECORD STORE TALES MkII: Getting More Tale
#358.5: On the Road Again

Today was another day on the highway, on the road to another hospital!  We’re making progress on Jen’s epilepsy and she is currently staying at a hospital in Toronto for a few days as they try to figure out just what’s causing these seizures.  It will be the longest we’ve been apart since we’ve been married, six years ago.

You don’t come here to read mushy stuff, you come for funny stories and to read about the rock!  The drive itself was uneventful.  The eastbound lanes are clear, but a jackknifed tractor trailer on the westbound side left just one lane open to traffic.  It was backed up as far as the eye could see, and I was grateful I was not one of the commuters stuck in it.

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We had Zeppelin on the ride into Toronto.  With your morning traffic jams that just happen, we listened to all of Led Zeppelin I, the deluxe edition with bonus concert CD, Live at the Olympia in Paris.  As good as this set is — and it is good — it didn’t suit the mood this morning.  I should have started with Queen instead.  I drove home to disc one of the new Queen Forever, and the pop sound and bright melodies of Queen were  better suited to lift the mood.  On the way there, Plant’s anguished screams only heightened my own tension.  On the way back, Freddie’s smooth crooning was just what the doctor ordered.  It was a bright sunny afternoon drive home.

As is par for the course this time of year, my car came home covered in a thick gray coating of sludge and salt.  I almost went through almost half a tank of windshield washer fluid today!

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If she’s there a while and I have to hang around there, I will definitely be checking out some record stores.  When we passed the Honest Ed’s building, I realized that we were right in the vicinity of Mike and Aaron’s Annual Taranna Record Store Excursion!  It would be weird to be so close and not check out Sonic Boom.

I’m looking forward to video chatting with Jen tonight on our laptops.  She’s got a few days ahead that will be a mixture of boredom, homesickness, and tedious testing.  Me, I’m back to bachelor living for the week.  I’m already bored.

Today’s musical lesson: Queen lifts the mood!

#342: All in a Day’s Drive

RECORD STORE TALES Mk II: Getting More Tale
#342: All in a Day’s Drive

Friday November 21, 2014 was a pretty nice day weather wise. There was no precipitation and the skies were clear. If you’re going to pick a day to make a drive down the 401, you couldn’t have picked a better one. Jen needed to see a doctor at the hospital in Mississauga, so off we went. [Note: don’t worry, she’s fine. This is regarding her epilepsy.]  I brought music and reading materials, and kept a log of the rock:

9 am: Depart Kitchener for Brampton. Playing in the car: Deep Purple – Smoke on my Mega-Mixa bootleg compilation CD of remixes and live tracks.

10 am: Pick up Jen’s mom in Brampton [she spent the weekend with us]. Depart for Mississauga. Playing on car stereo: Van Halen – 5150.  As a “bonus track”, I tacked on the live version of “Why Can’t This Be Love” (from the music video) to the end of the playlist.  Jen’s comment: “The singing on this is… (pause)…really not as good as the regular version.”  She’s right.

11 am: Arrive at hospital. Playing on mp3 player: Kiss – Love Gun (deluxe). Reading material: Martin Popoff – Live Magnetic Air: The Unlikely Saga of the Superlative Max Webster

4 pm: Depart hospital with mission accomplished.

6:30 pm: Finally arrive home after 2 1/2 hour crawl along Highway 401!  The whole way was brake light city. Just a tedious, slow drive. There was no reason for it.  From what I could tell, it was all caused by commuters that didn’t know how to properly merge.  When somebody leaves you 5 or 6 car lengths space to merge in, take it.  Don’t race further ahead to see if you can get in front of that transport truck and that guy in the Hyundai.  Car music: Van Halen – Fair Warning, Diver Down, and A Different Kind of Truth. Yes, that means Jen and her mom heard a LOT of Van Halen today. And that’s fucking cool.

For more information on epilepsy, please visit epilepsyontario.org.

Part 43: Shake Your Foundations (Epilepsy Sucks!)

In 2008, the year we got married, Jen was diagnosed with epilepsy.  Some people with epilepsy never have a seizure, once diagnosed and medicated.  Unfortunately for us, Jen is not one of those people.

It’s been a long hard struggle, but we have made it through so far with humour and a positive attitude.  One part of having a positive attitude came from my research on the illness. While researching epilepsy online, I discovered that numerous rock stars have it, but still function!  Knowing this was a huge boost to our attitudes, because being on stage involves lots of lights, and lights can be a trigger for many people with epilepsy.

I constructed a 4 O’Clock 4-Play for Craig at 107.5 Dave FM, involving this theme.  My goal was simply to raise awareness.  I told Craig, “If just one person hears this and learns something about epilepsy then my work is done, because so many people have no idea what it is.”  Judging by the feedback I got, it did succeed in getting people thinking!

1. Prince.  The royal single-monikered one was born epileptic and suffered a lot of taunting at school.  He’s obviously come a long way since!  I submitted “Let’s Go Crazy” in my 4-play but Craig subbed in a collaboration with Stevie Nicks which was fine by me!

2. Lindsay Buckingham.  He was born with a mild form of the disease, but still manages to tour with Fleetwood Mac.  Good on him!  I chose “Go Your Own Way”.

3. Adam Horovitz.  This Beastie Boy is sensitive to flashing lights, which I am sure they use in their stage show.  It certainly didn’t seem to hold him back from massive success.  For this 4-play I chose “Sabotage”.

4. Neil Young.  He was medicated for epilepsy as a child, but didn’t like the side effects of the meds, which can go all over the spectrum depending on you and your meds.  Neil chose to make lifestyle changes instead, and has lived without medication since!  And, obviously, rocked the world.  Good on you Neil.  I used “Rockin’ in the Free World”.

Epilepsy scares a lot of people when they see a seizure happen.  Don’t be scared, but if you want to learn more, check out some of these links.

http://www.epilepsyontario.org/

http://www.epilepsy.ca/en-CA/Epilepsy-Canada.html

http://twitter.com/#!/EpilepsyOntario