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.
In my 20s and early 30s, I used to think I would love nothing more than I love music.
It’s an easy conclusion when people let you down, but a good song never would.
When love hits you for real, everything changes. You have to redefine everything. What once seemed crucially important now seems trivial. What used to have your undivided attention now competes with something nearer and dearer to the heart. It happens. There’s nothing wrong with that; in fact it’s a good thing to have in your life. I don’t think Paul Stanley will mind that there’s something more important to me now than a collection of songs.
Love is heaven, and love is hell.
Love is hell when the one you care for is sick and it kills you inside every time to see them hurt.
Love is hell when their suffering stabs you in the heart and leaves you in agony.
Love is hell when there’s nothing you can do about it.
Epilepsy is hell.
It’s hell for the person who has it and it’s hell for the people who care.
Epilepsy is hell when you see someone in a seizure and can do nothing until it has run its course.
Epilepsy is hell when someone falls and you’re too late to stop it.
Epilepsy leaves marks. Sometimes, you don’t even know where they came from. “You must have fallen,” I said to Jen. But when? How could she not know? Purple bruises decorate her chest, her arms, even her face. People see bruises and they judge. They assume. They look at you funny.
I would have done anything to catch her fall. But how can I when I can’t be everywhere all the time?
The facial bruise stares back at me, and it makes me turn my head. I can’t look at it. It’s horrible. It makes me want to break down and cry. How could this have happened? But there’s nothing I could have done. I wasn’t there and she has no memory of it. We can only guess and sometimes that leads the imagination to come up with far worse, far scarier scenarios.
Even when the seizure is over, the afterburn can go on for hours. Sometimes it’s like sleepwalking. She’s completely unaware of what’s going on, but she’s able to unlock a door and leave the house. It’s happened before, at least three times. Once I found her wandering the hallway, bumping into a wall. Once she left the house in the middle of the night and I only realized she was gone when the phone rang. She was trying to buzz herself back into the building, terrified. She had no idea how she got out there. The third time, I noticed the house had gone quiet and she was nowhere to be found. I discovered her walking in a daze up King St., in the cold, with no shoes on.
I’m usually able to stop her. No mean feat; she’s strong.
Yesterday was awful.
I was working on a project. I heard her coughing, and I ran out into the living room. She was fine, just something went down the wrong pipe. I admonished myself for panicking. But then, 10 minutes later, there was more noise, like mumbling. I ran back into the living room to find her in a full-blown seizure. Her lips were blue and she was making unintelligible sounds. It passed quickly and she laid down on the couch to rest, completely zonked. Then the worst came. The next sound I heard was the door opening. Sure enough, she was on her way out again, unaware of her situation.
I don’t know how, but I somehow managed to race out there and position myself between her and the already open doorway. It is like a blur to me now and I have no idea how I did that. It was teleportation, or a miracle. I slammed and locked the door and kept myself jammed against it. Even in her dazed state, she kept unlocking the door and reaching for the knob. She kept repeating, “Sweety, I have to go,” but could not respond to questions. She had no idea she had no shoes on. I stood there in front of that door for a solid 10 to 15 minutes, as she tried to move me out of her way. I resisted, but she is strong, and I was terrified that if she pulled at me and I didn’t budge, that she would fall backwards and hurt herself worse.
The neurologist wants me to try and get video of these kinds of episodes. How??
I struggled, wrestling with her, trying to keep her hands away from the door knob. She cried in pain when her wrist twisted in my hands. It was the worst feeling in the world — for me.
After what seemed like millennia, she grew weary or perhaps forgot what it was she was doing. She went back to the bed, to sleep it off. It took almost three hours of sleep for her to return fully to normal. Or at least, whatever passes for “normal” when this is the life you have.
My “normal” now is a constant state of alert. I am always listening. I have to be. It’s a constant state of anxiety that rarely subsides. It is the life I live now. It’s like when the Starship Enterprise is at yellow alert. I’m at yellow alert almost all the time. I go to red alert when she’s in danger. Red alert happens every few weeks. It seems like I’m rarely in condition green. We have a system where she’s supposed to text me every 30 minutes when she’s out alone, which helps keep me calm. It’s not perfect but what else can I do? You could say “just don’t worry about things you can’t control”, but after 10 years of conditioning, my nerves are shot. It’s hard to make a plan for your night, let alone your life, when this happens.
But here’s the thing.
Love is hell, but the truth is, it is also heaven. The good always outweighs the bad. I would not trade my place with anyone. I am where I want to be. With the person I love. Through good and bad. Sickness and health. That’s what we swore to, and that’s the way it is. If this is my life, so be it. I just have to learn to live with it, and I’m trying every day to get a little better at that.
15 years seems like a long time even though it’s really just a blink of an eye. My life changed forever 15 years ago. That’s when I met Jen. A big gaping hole in my heart was filled forever that day. There was never really a question that she was the “right” one for me. She always knew.
She had my back from the start and helped give me the confidence that I needed to finally quit the Record Store. Since 2000, the environment there had become extremely toxic and I needed to get out for my own health. If she didn’t have my back, I wouldn’t have left and my sanity would have been frayed.
This extra-mushy post has been brought to you by love.
Our first few years together were filled with dreams. We talked about what we wanted to do for our wedding and what we were going to name our kids.*
Then she got sick. That put the brakes on some of our plans. Her doctor wanted us to wait to have kids. When her health got under control, we thought, we could have as many as we wanted. Two seemed like a great number. A boy and a girl. I really wanted a baby girl. As time went on we realized it was never going to happen.
“Why don’t you just adopt?” asked people who didn’t know our situation. Adoption stopped being possible when her health got worse. The reality was we needed someone to babysit her, not someone for us to babysit. It has been a tough reality but I’ve never regretted any of it. I’d rather live with just the two of us, than have kids with somebody else. If this is what our lives were meant to be, then so be it.
After we got married and settled in, we had to deal with loss after loss after loss. We still paid off the condo, and just rolled with everything that life threw at us. Every time one of us feels like giving up, the other one says “no way”. We’ve come too far to throw in the towel now. The things we’ve endured together would slay lesser mortals. Sometimes at night, I’ll just lie there thinking about how lucky I am.
We keep on keepin’ on. Because of her, love songs are sweeter and breakup songs don’t sting like they used to. We live quiet lives now but I’m never, ever bored. She gives me the time, space and inspiration to keep on writing. In exchange she can watch all the sports she wants! It’s a pretty sweet deal and I’ll never take for granted what a lucky bastard I am.
* She has never approved of my choice, Spencer Peter Oscar Carl Kevin. Spell out the initials.
THE CULT – Rare Cult(2000 Beggars Banquet box set with limited 7th remix CD)
Rare Cult is a feast of rare and unreleased Cult music, for the Cult connosoir only. If you’ve been a Cult fan for a while but have struggled to find those early singles, then this is your dream box set, my friend. They have a lot of singles and assorted rarities, and acquiring a complete set of them all takes money. Rare Cult secures a huge chunk of that music in one package.
I’m not going to bother cataloging all the different tunes and where they came from. They’re too numerous but I will say the following:
1. This set has an enormous number of unreleased demos and otherwise finished songs that nobody had heard before — not previously released on B-sides. The songs range from the Dreamtime era (1984) with some cool, unheard BBC performances. Over six discs, it spans over a decade to 1995 when the band broke up (for the first time). All tracks are of very good sound quality.
2. There is a humongous (80 page) booklet inside, with complete credits and details for every single song contained within. Billy Duffy and Ian Astbury provide commentary, and there are lots of photos too.
3. There are a lot of remixes here, as per normal for a band from this era. In fact there is an entire seventh limited edition bonus disc dedicated single remixes, called Rare Cult Mixes. I don’t know how many copies were released with the bonus disc, but be sure of what you buy before you buy it! Personally I don’t see the point of buying this set without the seventh disc. For example, the “Fire Woman” single had two excellent remixes: The “LA mix”, and the “NYC mix”. The NYC mix is included on the Disc 5 of this box set, but to get the LA mix, if you don’t have the “Fire Woman” single, can only be had on the limited edition seventh Rare Cult disc. If you’re a collector (which I think you are, because if you’re not you probably stopped reading this already) then there’s no reason to buy the version without the bonus CD. Wait it out and get the full package.
4.Peace. While astute fans had probably collected most of these tracks already, this box set contains the first ever official release of the Peace album, in sequence on disc 3. The Cult were working on Peace after the Love album, and even finished it, but scrapped the recordings for being too Love-like. They hooked up with Rick Rubin to revamp, re-write, and re-record the album, released as Electric. Many of the Peace songs surfaced as B-sides over the years, on singles and EPs such as The Manor Sessions. While Rare Cult was the first release of the full Peace album, it has since been reissued as part of the Electric Peace two disc set.
5.Warning! There’s more. If you really, really, really want it all, you have to shell out for the single CD Best Of Rare Cult which had five exclusive songs not included here. Oh, marketing. The five exclusives on Best of Rare Cult are: “She Sells Sanctuary (long version)”, “Spanish Gold”, “The River”, “Lay Down Your Gun (version two)”, and “Go West (Crazy Spinning Circles) (original mix)”. Some of these songs, such as “The River”, are B-sides, while some are unreleased.
6. There’s even more! Yes, there are demos here, but that’s not all of them. The masterminds behind this set cleverly left off enough demos to create a whole other box set. You’ll want to pony up for Rare Cult: The Demo Sessions (an even more limited edition 5 CD set of its own) which is interesting in its own right. Look at Rare Cult as scratching the surface.
7. Even with all this stuff available out there, The Cult liked to include live songs on their singles. None are present here. Be forewarned, you may still want to get those original singles anyway, if you care enough! Maybe they should do a box set called Rare Live Cult. (Are you listening Ian?)
As a listening experience, Rare Cult is long but rewarding. One thing about The Cult, they were a diverse band, and this set is very diverse. For example you’ll go from a very dancy 80’s remix of “Sanctuary” straight into “No. 13” which is more punk influenced. Regardless of what it is, or what it isn’t, I think this set is worth listening to. Even their demos are better than most bands’ album tracks. Like many bands who released numerous single B-sides, The Cult put effort into all their songs. Check out “Sea and Sky”, “Bleeding Heart Graffiti” and “Bone Bag” as ample proof.
The packaging is quite nice. It comes in a sturdy black box. The aforementioned booklet allows you to read through the whole history of the band up to 1995. The first six discs are housed in three double digipacks, while the seventh disc sits in its own sleeve tucked into the box.
You might not very often have the luxury of 8-9 hours to listen to the Cult, but if you’re a fan, think hard and consider your buying options.
Happy Anniversary to my beautiful soul mate Jennifer. Every day gets better and better, and you look younger and younger! I don’t know how you do it. Meanwhile I’ve turned into a grey-bearded old man with a bad back and lactose intolerance, and you still keep me around! Must be love. It’s the only possibly explanation why you live in a house full of Transformers, CDs, and records.
The last six years have been the happiest of my life. Thank you for being the puzzle piece that was missing all that time.
Love you, sweetie. Here’s one of the songs we danced to six years ago, on the best day of my life.
I have 31 discs of music to listen to now. And a whole lotta other goodies. Here we go!
First up – books. Peter Criss’ Makeup To Breakup, and the latest from Ripley’s Believe It or Not and Guiness’ Book of World Records. I’ve leafed through Peter’s book — all he seems to do is bitch about Paul and Gene. Review will come.
Next, Queen. A total of 8 discs of awesome remastered Queen to listen to: The Miracle, Jazz, A Night at the Opera, and Live Killers!
Next up, Rush. 6 discs in each of these two Sector box sets, including 2 DVD’s in 5.1 surround, plus 2 discs of 2112. Awesome. (I already have Sector 2 and have a review of that coming in the next few days.)
And the rest: The 4 disc Cult Love Omnibus Edition. Thin Lizzy’s Life Live (2 discs), Jon Lord’s Concerto for Group and Orchestra, and the new Rage Against The Machine XX edition (2 discs plus a DVD).
But that’s not all. Check out this Kiss lunchbox, these movies and vintage G1 Transformers 1988 “Bugly” action figure.
Lastly my folks got me this neat Joby camera tripod. This is going to come in handy when I make my next Transformers stop motion animated movie. I did a brief 15 second screen test — check that out too!
Hope your Christmas was filled with happiness, love, joy, and rock!
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