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.
Thanks to everyone for your kind comments about my 50th birthday gone awry. Jen is feeling better, though besides a fat lip, she now sports a nice black eye. Could have been worse.
I’m still Covid negative so I’ll take that as a win. The cold that I do have is not so bad, and though I am back at work, I have not been able to do a full day yet. But that will improve.
After Jen felt better from her fall, we opened some gifts. She got me some cool Marvel and Star Wars figures, but the music is the best part.
First up was the new Black Crowes EP, 1972. This six-song covers EP is getting rave reviews and I cannot wait to hear the Rod Stewart cover “You Wear It Well”. This EP is in anticipation of new material from the reformed band. There’s even a photo of the new lineup (including returning bassist Sven Pipien) which is a packaging touch I always appreciate. I have been skeptical of the Crowes’ current reunion, but putting out new music with this lineup alleviates most of that. Dig it!
And then we have the massive Black Sabbath Technical Ecstasy box set! This is one of my favourite Oz Sabbath albums. Actually one of my first, after Paranoid. The box includes the full album, the album remixed, some outtakes and a live show from 1977. The live show looks especially cool, with “Gypsy”, “Dirty Women” and “All Moving Parts” in the setlist. “Electric Funeral” is even included. The bizarre cover art has always struck me as Asimovian. Think The Gods Themselves.
Thank you Jen. What a day for you. You sure know how to buy gifts though.
Then I unboxed the massive parcel sent to me by Thor in Denmark. It was heavy. I didn’t know what to expect. It was obviously packed full. Even so, nothing broke in transit! Everything arrived in great condition, but there was so much stuff inside, we need to do a complete inventory.
First, there’s Anthem: Ultimate Best Of Nexus Years Japanese import with obi strip intact. Thor actually wrote an excellent review of this album with all the details. Bassist Naoto Shibata played on one of my favourite Loudness albums, so this is a total enhancement for my collection. It’s a double disc with a different singer on each disc, from two eras of the band. He rated it 4.95/5!
Then we have Red, Hot and Heavy by Pretty Maids, a band he considers the most underrated in metal. I don’t know this one, but it’s from 1984 so I think I’m going to like it.
Finally we have a self-titled album by Dizzy Mizz Lizzy, who I had to look up. This is a 1994 debut album by a critically acclaimed Danish band. Says a review on the Wikipedia page, “It all heavily oozes Led Zeppelin and Seattle.” Sounds good to me.
It may take a while for me to get to Dizzy Mizz Lizzy, considering Thor also sent me the motherlode of a band I first heard in the 80s, D-A-D, originally known as Disneyland After Dark. They too hail from Denmark, and I have praised their 1989 American debut, No Fuel Left for the Pilgrims, with a 4.5/5 star review.
Well, Thor went overboard. And by that, I mean Overmuch! Look at all this D-A-D glory! Thanks to him, I must now be the proud owner of the best D-A-D collection in Canada. Let’s go through everything one by one.
No Fuel Left For the Pilgrims (1989). This is the super rare original version of the CD, with the original name, before the change to D-A-D. Not only is the cover different, but so is the mix on four tracks: “Sleeping My Day Away”, “Point of View”, “Rim of Hell” and “Girl Nation”. On the international CD that I have, these four tracks were remixed by Chris Lord-Alge. You can hear the slight difference, mostly in terms of levels in the mix.
Good Clean Family Entertainment You Can Trust (1995). A single disc compilation with live and studio cuts, and loads of single artwork inside.
Psychopatico (1998). Double live. Their first live release besides a 1990 live Japanese EP. 17 tracks total.
The Early Years (2000). Double compilation! Includes their first two studio albums, plus their debut EP called Standin’ On the Never Ever, and 17 rare or previously unreleased bonus tracks.
Scare Yourself Alive (2006). Another double live! Two gigs from 2005 included. Minimal overlap between the two discs.
DIC·NII·LAN·DAFT·ERD·ARK (2011). Studio album. Check out that Super Audio CD case! Looks like I have all their studio albums now, as you shall see.
A Prayer For the Loud (2019). Their most recent studio album.
And, best of all…
The Overmuch Box: Twenty Five Years of D-A-D (2009)! This includes all their studio albums up to 2008, completing my collection! The albums are:
Standin’ On the Never Ever (1985 EP)
Call Of the Wild (1986)
D-A-D Draws a Circle (1987)
No Fuel Left for the Pilgrims (1989 US version)
Riskin’ It All (1991)
Helpyourselfish (1995)
Simpatico (1997)
Everything Glows (2000)
Soft Dogs (2002)
Scare Yourself (2005)
Monster Philosophy (2008)
Bonus album: Behind the Seen (Rare, unreleased & B-sides 1984-2009)
There’s still a bit of D-A-D out there to acquire, such as that Japanese EP, but surely not much. To be honest I never expected to get any more D-A-D beyond the Riskin’ It All album (which is supposedly lethal). But…holy shit people! That’s enough D-A-D to take years to digest.
Thor’s generosity cannot be understated! This is awesome stuff. You never see their music around in Canada, and I simply assumed I’d never have them. I love the price tags from a store called Moby Disc – great name! To have this much D-A-D, including the early stuff I only read about, and both versions of No Fuel, I’m just blown away. Truly overmuch! This is a band that has been special to me for a long time, because I can remember sitting in Bob Schipper’s basement when that music video came on. He went nuts for it. Just loved it. Just like I loved that big guy! Nothing but great times.
Thank you Jen, thank you Thor, and everyone who wished me a happy birthday.
Well, it happened. After two and a half years of no illnesses whatsoever, this boy finally got sick a couple days before his 50th birthday. Not Covid, thank fuck. Just the cold that seems to be going around “like wildfire” according to our pharmacist. Sunday night it hit like a ton of bricks and I was in bed by 5:30. Monday I was coughing with a sore throat and spent the entire day in bed, a couple hours here and there aside. Tuesday I was well enough to go back to work. Dead tired though.
And so, this 50th birthday that was supposed to be a simple movie night with the parents is now a night at home by ourselves. Can’t bring this cold into their house. Additionally, because I didn’t go into work on Monday, I cancelled my planned day off on Friday. Just not enough time left in the week to get everything done. We were supposed to do a 50th birthday celebration at the lake but that won’t be happening.
As miserable as I felt, it’s nice to get the birthday messages. Because I can, I’ll boast a bit about the celebrity birthday wishes. I’m always a little shellshocked when guys like this wish me a happy birthday:
Brent Jensen, the author and podcaster who always makes my skin vibrate
Mike Fraser, world-class producer and mixer extraordinaire
Brent Doerner, Helix guitarist
Greg Fraser, Brighton Rock and Storm Force axe-slinger
Michael Willerding, former drummer for Russian Blue and Feel
Rik Fox, original W.A.S.P. bassist who messaged all the way from Facebook jail
Even though I feel like I need an extended
[cut]
That is the exact moment while writing this post on a snack break that my cell phone rang.
Same old, same old, same old. The mall called. My beautiful wife had a seizure. This time, she fell flat on her face and cut her lip. She looks absolutely brutal right now. It hurts my heart.
Had to leave work early. I’m exhausted. She’s pretty sore.
Let’s focus on the good. Trying to focus on the good.
OK, the good:
Happy birthday wishes from all my friends and relatives
Surprise birthday pizza and pasta from our pharmacist, Vu
Surprise birthday parcel from Thor, aka Thunder Blackmore (it’s just cool getting a text message that says “You have a parcel from Thor”)
Jen is safe
I was going to do a big unboxing of Thor’s parcel but I am dead tired now. I need rest. And what says “you’re 50 years old now” better than a nap?
It can only get better from here. Happy 50th, to me.
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:
“Wow, your beard is WHITE!”
“Your nose is pointy…and triangle shaped!”
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.
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