epilepsy

#1241: Time To Talk

RECORD STORE TALES #1241:  Time To Talk

For the first time in…well, perhaps ever…I have been unable to write about my life.  This entire site started because I wanted to write about my life…and I have been paralyzed, frozen, unable to put fingers to keys and just pound out some words.

Even when Jen had cancer…even when her mum was dying…I was still able to write some words.  I might have taken breaks, but I was still documenting and logging my thoughts and feelings.  These days, I haven’t been able.  Ever since December 2025, I’ve been clamming up and keeping things private.  The reasons for this are multiple, so let’s see if we can’t crack this open and talk about life changes.

It would be a lie to suggest that the political changes of the last two years have not affected me and my life.  I have spent many nights in existential dread mode.  (Check out Kumail Nanjiani’s comedy special Night Thoughts for some humour on this subject.)  It’s not just wondering about the end of the world, but also the real-world impact of tariffs on my job.  Times are hard everywhere, and now with gas going up, summer just got a lot more expensive.

Summer means we made it through winter!  It was an uneventful winter here, except for a couple major upheavals that we’ll get to momentarily.  Winter used to be my nemesis, my Kryptonite.  It used to be the element that could be counted on to bring spirits down and destroy hope.  Winter 2025-26 was nothing.  At least as far as seasonal affective disorder goes.

What has become more difficult is that Jen’s seizures have become more severe and frequent as of late.  We saw the neurologist and there’s nothing more he can prescribe.  We’ve been through every medication there is.  In 20 years of dealing with this bullshit disease, we’ve never hit a point where there was no hope left.  We have to live with it.  There are no options available.  Oh sure, they’re talking about sending her back to Toronto again for weeks and weeks of observation.  That didn’t do anything last time.  I guess it’s something.  We’ll be separated for that time, while she is stuck in observation and I toil away at home.

That is where we get to the biggest change, one which I have been reluctant to speak about.  Work changes are scary, and due to a variety of reasons, I no longer have an office to work out of.  The physical building in which I worked for 19 years was sold, and eventually came the decision that we’d been semi-expecting for years:  the office was closing.  This was the biggest life change I’ve experienced since getting married in 2008.  Working from home!  I’d done it on a tiny laptop before, but now I had to set up my own home office.  This all coincided with my unfortunate accidental dumpster dive, and subsequent injury.   This only added to my stress, as I had a timeline for moving into a home office that I wanted to adhere to.   Everyone had to help with the office closure, but my rib injury made my participation extremely painful.  This news was not what the others wanted to hear, (as was made clear to me) but I did my part, probably setting back my healing timeline by a couple weeks.  I bought a desk; one of those fancy electric ones that raise and lower, which helped me deal with the rib pain by changing positions when uncomfortable.  I set up a home office.  It is small.  It is cozy.  It is all mine and I am surrounded by my things, and all the toys and music that makes me happy.  I settled in quickly and fell in love with my home office.

I don’t want to jinx it.  I don’t think everything lasts forever, so I am going to enjoy the home office to my fullest extent while I can.

I make my own home cooked meals for lunch.  I go out to the convenience store on my breaks.  I have lunch with my mom and dad once a week.  I don’t have to drive anywhere.  I saved a ton on gas.  I have only fueled up four times in 2026, and it’s mid-April.

The difficulty here was probably more on Jen’s side.  She was used to having the house to herself almost every day.  Now she has me to deal with, but she’s made the adjustment and has a healthy schedule of getting out daily.

I don’t want to talk about working from home and further than that.  It has been a privilege and I feel like if everyone knew how comfortable, how efficient, and how great I feel working from home, it’ll all go away.  So enough of that.

I have continued to buy new music, but have not felt motivated to write about it very much.  I’ve gone through periods like this before, and now I understand that it’s just a phase.  It doesn’t mean I’m all done or won’t be able to come back from this.  I used to think that.  Experience has taught me that these creative waves can end, but return when the time is right.  It’s still cold, it’s still dark, but spring is here and that always changes my creative life.  Soon it will be time to charge up the drone, and fire up the barbecue at the cottage.  Summer at the cottage always offers its own creative opportunities, and is the best setting for listening to new music.  Perhaps this summer, it was be the Van Halen 5150 anniversary box set.  Live Without A Net on the front porch in the sun?  Sounds great to me.

One of the most unusual things about this past winter was that it was my first winter in 52 years without my Grandma.  Even as she grew older and weakened, we still tried to go and see her every other weekend.  That part of our routine was gone, and it was strange for a while.  There were times when I thought I’d pick up the phone and tell her something.  One thing Grandma used to love was when we’d come over and show her my drone videos.  She loved seeing what the cottages looked like from the air.  This spring, when I take my new drone up in the sky, I wish Grandma could see my videos.

Spring and summer always offer surprises.  I never know what my next creative project will be, but something always comes up.

Let’s find out.

Let’s keep going.  Onwards.  Allons-y!

#1236: Zombie Seizures

RECORD STORE TALES #1236: Zombie Seizures

 

I am a full time caregiver.  It is my blessing, but it is also undeniably a taxing role.  I love my beautiful epileptic, and I have come to know the signs when it comes to her health better than my own.  I would not trade this role with anyone else, because I would not trust this role to anyone else.  There was only ever one other person I trusted to take care of Jen, and that was her mom.  Now the job falls solely upon me.

Seizures come in a variety of flavours.  Some are simple “zone outs” or absence seizures.  Some involve the more stereotypical convulsions.  The worst ones involve serious falls and injuries.  The ones I have grown to hate the most are what I call “wandering seizures” or “zombie seizures”.  In a trance-like state, Jen will wander around the apartment, trying to find an exit.  Sometimes she collides with furniture or tries to walk through a wall.  In these cases I find myself trying to keep her from injury and guide her back to the bed.  This is often impossible.  When Jen is in one of these seizure states, she can be all but unstoppable.  Even if I am physically blocking her path, she can still manage to unlock and partially open doors in an attempt to get out.  She is very strong.  In one of those seizure states, she is also very determined.  It can take an hour for her to come out of it.  That is a long time to keep watch, keep guard, and try to physically keep someone safe.

This week was a bad one.  On Saturday, as usual, I struggled with sleep.  I wanted to wake up early and get to work on my many creative projects.  And so, I did.  I was up before 5:00 AM.  By 2:00 PM, I needed to crash for a nap.  Jen snuggled me to sleep for a bit and then went to go watch the sports coverage on TV.  About an hour later, I groggily woke, not fully rested but at least better than before.  I heard a banging on the bedroom window and I knew immediately what it was.  Most people would be scared shitless.  “Who is banging maniacally on my bedroom window?”  For me, experience told me what had happened, and a look out the blinds confirmed it.  Jen was stuck outside, in the mud and snow wearing just socks on her feet.  Her hair was a mess and it was clear she had a zombie seizure.  It took what seemed like forever to find a pair of pants and my keys.  (I need the keys to get back in.)  I threw on some Crocs and ran outside.  Jen had already wandered the full length of the parking lot, all the way to the road.  A few neighbors were watching – I ignored them, ran to Jen and spun her around 180 degrees.

“What’s going on?” she asked, but I didn’t say much.

“Getting you back inside.”

“To the car?” she asked as we walked past our vehicle.

“No, to bed.  Come on, let’s go,” I nudged.

We even have bells attached to our door, so that if Jen walks out unexpectedly, I can hear the door open.  Unfortunately this doesn’t help if I am asleep.  You can only prepare so much.  You can only safeguard so much.

We slowly got ourselves inside, got the socks off, and got her into bed.  It felt like forever.  I have no idea how long it really took.

I was physically exhausted and sore after only those few minutes of activity.  A neighbor knocked on the door to return a blanket that Jen had dropped in the snow.  I spotted two cop cars outside, so I knew someone had called 911.  Strange that it was two cops and no ambulance.

It often takes me a solid 24 hours to recover from a zombie seizure experience.  It takes Jen about the same.  Sometimes I feel like a zombie at work, when it happens on a work night.

She’s OK.  I can’t imagine what it’s like to be in that state.  She won’t remember any of it.  I will remember it all.  Someone has to.  Someone has to accurately tell the neurologist what happened when we see him again.  It’s my job to make sure.

I am a full time caregiver.  It is my blessing.

On This Day: June 16 2023 & 2024

On this day in 2023, June 16 fell on a Friday.  As usual, Grab A Stack of Rock was scheduled to go live that night with our very first Iron Maiden episode (which I shall re-edit and re-broadcast in 2025).  It was Iron Maiden rarities with Harrison, Aaron and a cameo by Jex Russell.

It almost got cancelled at the last minute.  Why?  See below.

I’m glad we re-ran the Adventures in Epilepsy episode last week so you can understand how it effects our lives every day of every week of every year since 2008.  She fell, and as you can see, she took a faceplant.  She insisted the show go on.  She never wants to be the reason a show gets cancelled.  And so the show went on.

On a brighter note, on this day in 2024, it was a completely different story.  Well, not completely:  Aaron was there with me once again, as we embarked to Toronto for our very best record shopping excursion to date!

Check out these episodes of Grab A Stack of Rock, and be sure to like and subscribe on YouTube!  WordPress is fun but it doesn’t keep the lights on.  If you could support us YouTube, it helps a lot!

 

 

Adventures in Epilepsy – Special Re-Formatted Episode – Tonight Jun 13 7:00 PM EST

Originally broadcast on Oct 2, 2020 as two streams totaling 2 hours and 12 minutes.  This new version has been re-focused down to a perfect 50 minute show.

In October of 2020, right in the thick of the pandemic, Jen had a seizure at a local fast food restaurant.  She fell and broke her arm.  We decided to make that week’s episode of the LeBrain Train all about epilepsy awareness.  While we did our best, we had technical difficulties that night, and the episode didn’t turn out like we hoped.

It’s funny to go back and watch live streams from five years ago.  So much has changed since then.   The original 2020 show was split into two live streams as some viewers reported that the Facebook feed was freezing, so we stopped and re-started.  Additionally, the original show was live and off the cuff, and was interrupted several times.  This new edit has all the epilepsy content in one stream.  As such, Adventures in Epilepsy episode has never been presented as one cohesive video before.

Hear all about missing out on a free U2 concert, having to leave movies and shows early with no refunds, and nearly walking into traffic!  Also hear the lighter side of seizures.  We learned early on, if you can’t laugh at these things, you’re doomed.

Join us tonight as we educate and illuminate living with epilepsy.  Though a lot has changed since 2020, the experiences remain raw and true.  Health has improved since then, which we also touch on with additional narration recorded in 2025.

Jen herself appeared in this episode, as good a sport as any.  Good friend and author Aaron Lebold joined the show that night to discuss his own experiences with epilepsy, which he seems to have grown out of in his adult life.  Rob Daniels from Visions in Sound and Kevin Simister from Buried On Mars also joined the show at the end to say hello.  Though most of their parts were cut to shorten and focus the episode (some unboxings and other outdated content were cut), we always appreciate their support.

Check out this special re-amplified episode tonight at 7:00 PM EST on the Grab A Stack of Rock live streams.

Top three musicians with epilepsy

1. Prince.  The royal single-monikered one was born epileptic and suffered a lot of taunting at school.  He obviously came a long way from there

2. 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.

3. 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.

To the three teens on the #12 GRT bus in Kitchener around 5:40 today

There were three of you, aged 17-20.  You were playing some kind of flashy game on your phones.  It was causing my epileptic wife distress.  She asked you to stop.  She told you she had epilepsy and could have a seizure.  What did you do?  You angled your phones at her, and she had a seizure.

That’s assault.

You are lucky my wife does not want to call the police.

You are lucky I was not present, or I would have called the police.

Consider yourselves very fortunate today.

 

#1084: Ghost’s No Cell-Phone Zone

RECORD STORE TALES #1084: Ghost’s No Cell-Phone Zone

Those of us over a certain age, don’t we all long for the old days?  Wouldn’t it be nice to see an arena full of cigarette lighters instead of cell phones for a change?  Ozzy used to scream to the audience:  “Let me see your cigarette lighters!”  Does anyone ever command an audience to raise their cell phones?

I kid, of course.  The real issue is that some bands today, such as Ghost, don’t want to see a show being filmed and uploaded to YouTube.  I get it.  Bootlegging is far more ubiquitous than it was when I was in my 20s.  Back then, if you had the balls, you could try to a record a show yourself, like my sister’s friend did with the Barenaked Ladies in the 90s with a mono microcassette recorder.  They were able to get a few unreleased BNL cult classics on tape that way.  It sounded like shit, but they had it.  It was easy to sneak in the tape recorder, but you had to flip the tape and make sure you had fresh batteries in there.  Not to mention, you had to actually own a small tape recorder, which not everyone did!  Today virtually everyone has a cell phone, and virtually every cell phone has a hi-def camera built in.  You can even record in stereo on some.

Presumably for this reason, Ghost have initiated a No Cell-Phone Zone at their concerts.

The comments on this news were predictable.  “I have no problem with this,” said one troll, “since I have no desire to see Ghost.”

What about someone like me?  I am a full-time caregiver.  My wife has uncontrolled epilepsy and would not be at a concert of any kind with me.  I get a call, I leave.  That’s it.  I need my phone.

Here’s how it works.

Upon entry, your phone will be placed in a Yondr pouch, and locked.  You take the pouch and phone with you, pocket it, and enjoy the show.  After the show, you can unlock the pouch at an unlocking station.  How many of these are available, and where they are exactly, is not clear from the Ghost press release.  As long as these are plentiful and easy to access, this situation is not too bad.

If I got an emergency call mid-show, I could feel the vibrations, but I would not be able to answer.  However I would be able to step out, unlock my phone, and call back.

If the call turned out to be another air-duct cleaning company, or another scam, I would be pissed off that I exited the show to check my phone.  I wouldn’t have a choice.  If it rings, it could be an emergency.  That’s just my life.  That’s just how my life works and has worked for 15 years.

Although this scheme is something that seems new and therefore scary and threatening, it does seem to be workable.  You can feel your phone vibrate through the pouch, and still know your phone is getting a call.  What happens after that is up to you.  In my case, I would need to know what it was, and chances are, I’ll miss a song because of some stupid scam call.  In most cases, people will not check their phones at all, and just keep enjoying the show.

No cell phones waving in the air in front of you.  It doesn’t seem so bad.

The main factors are two:  the unlocking stations must be numerous, and easy to access.  Otherwise I’d have problems with this plan.

I’m cautiously on Ghost’s side with this one.  It will be interesting to see which bands adopt this, and who are opposed.

Could be interesting!

#1082: Happy 15th Anniversary to US!

I’ve often said that the best day of my life was August 31, 2008.

While that was a truly awesome day, was it actually the best?

I think every day since has been pretty special.  The fact that I found my one and only, and grown deeper in love since, is a pretty cool thing.  We’ve survived everything thrown at us so far.  Death, illness, and all manners of stress have not taken us down. Broken bones, bruised faces, and bad bad days.  There were mornings I felt like I could not go on.  She picked me up, and we just kept going.

When we met, all was hunky dory.  Well, not quite…I was miserable in my dead-end job at the Record Store, but we had no health challenges to speak of.  We were dating (sort of) long distance, with her in Brampton and me in Kitchener.  I picked her up in Brampton on a lot of Friday nights.  She took the train home on Monday mornings.  For three years!  We made it work.  Our families got along.  Four months after we met, and with her support, I finally quit that terrible job.  I have not regretted it for one moment.  I have said it before, but I don’t know if I would have had the confidence to quit if not for Jen.

We knew it was just a matter of time before we had to make it official.  We got engaged.  With six months to go before the wedding, I started noticing signs that something was wrong.  Jen and I loved played Nintendo Wii, and she was very competitive.  So was I!  When I noticed her spacing out during one of her favourite games, and having no memory of the previous few minutes, I knew it was time to call the doctor.  Jen, being the stubborn girl that I love, didn’t want to go, so I called her mom and dad.  She was diagnosed with epilepsy, which is what I had suspected.

So say this illness has changed our lives would be an understatement.  It would be safe to say that epilepsy has impacted every single aspect of our lives.

It’s only made us stronger, smarter, and more devoted.  Maybe we can’t go on movie dates like other couples, and sometimes the days get terribly stressful.  But here we are.  As committed as we were in that church, on that day in 2008.

I love my Jen.  Here’s to us!

#1075: Epileptics Will Say the Darndest Things

A sequel to Part 43:  Epilepsy Sucks!

RECORD STORE TALES #1075: Epileptics Will Say the Darndest Things

As a person with seizures that cannot be controlled by medication, my wife Jen has an interesting life.  The seizures are not as bad as they were several years ago, but they still happen regularly a couple times a week.  Lately they’d been pretty mild.  There was a series of them recently that left her unconscious for hours, and she fell three times that night (twice off the bed), but those nights are unusual.  We always must remain vigilant, and pay attention to any signs of coming seizures.  My job is to make sure she’s safe and doesn’t fall or hurt herself.

What is a seizure?  Unusual brain activity can be triggered by flashing lights, or even stress.  This causes Jen to lose consciousness, and sometimes flail her limbs about.  If she’s standing, she falls.  She makes utterances that sound like anything from gibberish to laughing to choking.  Worse things happen too.  It’s scary.  Not gonna lie.  Some people are surprised how calm I seem when they hit.  It’s just experience.

We have learned in our almost 20 years together that you have to have a sense of humour.  When funny things happen, they happen and it should be acknowledged.  For example, after a seizure, Jen’s vision can be extremely distorted and magnified.  She can see details that I can’t, and sometimes things appear incredibly close.  So, when she stared at my nose and proclaimed it “pointy and triangle-shaped”, I had to laugh.  That has to be written down and remembered, because that’s objectively funny.

Recently Jen had an “aura”.  Not quite a seizure, but with similar effects.  Jen is conscious, but in a daze, with similar sensory amplification.  It can be scary for her so I like to just rub her shoulders and talk her through it.  On this particular night, the aura struck just before a hockey game.  I tried to have Jen engage with me, instead of staring off at something scary in the distance.

“Who’s playing tonight?” I asked, gesturing to the TV.

“Team,” she responded simply.  It was the best she could do under the circumstances.

“I know our team [the Leafs] are playing tonight, but who are they playing against?”

“Shitty,” she answered.  I chuckled despite the circumstances.

“Montreal?” I asked her.  The Canadiens are her most hated team.

“Other shitty,” she replied.

“Oh!  Ottawa!” I laughed.

She nodded in the affirmative.

And so, I’m writing this down so we’ll always remember.  You have to laugh!  Yes, the aura left her dazed for hours afterwards, but it is important to find the humour in it.  You can’t let this disease beat you like that.

So laugh!  Find the funny things in life and remember we’re still breathing.

Jen in her Leafs jersey at the beach

#1069: A Tale of Three Seizures

RECORD STORE TALES #1069: A Tale of Three Seizures

It happens every few months.  Clusters of seizures, wreaking havoc on our mental health and chaos in the house.

We had a great weekend, but a weekend without seizures of some kind is very rare for us.  We made it all the way to Sunday morning without an event.  Although I didn’t witness them all, I counted three seizures on Sunday morning.

I figure there was one before 2:00 AM.  I woke up around then, and I found my Lego trumpet player smashed.  Jen had no memory of doing it, but she did manage to pick up most of the pieces and put them all aside somehow.  The final missing piece was found in the morning.  They only way we know a seizure happened was because the Lego was smashed, returned, and she had no memory of it.  It’s a bit like piecing a mystery together from the evidence left behind.

The second seizure happened before 5:00 AM.  I am certain that Jen could not get into the bed, because I was sprawled over the whole mattress.  I went looking for Jen.  Not on the couch.  Not on the spare bed.  Not on the parents’ bed.  I lit up all the lights in the house and called for her.  Not in the bathroom.  That’s all the rooms.  I went back into the spare room and she was on the floor.  I assumed she went to bed in the spare room due to lack of options, had a seizure and fell off the bed.  It was very difficult to wake her up and get her into a proper bed.  She was uninjured.

Third seizure was the one I witnessed.  I was outside working on the porch.  In between songs, I heard unpleasant noises coming from the bedroom window.  I looked in and Jen was convulsing.  It took her approximately three hours to come back to reality after that seizure.  And a lot of cleanup that I won’t get into.  Suffice to say it was a tiring and difficult morning for me.

For Jen it was a day of sleeping.  She spent most of it in bed.  I spent the morning watching two of the greatest sequels (with two of the greatest sequel soundtracks) of all time:  The Empire Strikes Back, and The Wrath of Khan.  I wasn’t in the mood to be outdoors.  I wanted to be in where I could better monitor Jen’s recovery.

Incidentally, we have a pretty good idea of what caused the seizures this time.  She missed her meds the previous day.  That’ll do it.

We try not to let these things ruin our weekends.  We had a great five days at the lake, regardless of Sunday being a writeoff for Jen.  We made the best of it.  We had a tomahawk steak for dinner, but I was just wiped out afterwards and called it an early night.

Nobody said it was easy.  But we don’t quit either.  We don’t give up on each other.  We’ve been through enough this year already.  This wasn’t even a roadblock or an obstacle in our lives.  Once it’s over and done with, all that’s left is to write the Record Store Tale.