Sometime around first or second year university, my mom gave me a call to discuss some rather terrible news. She’d been diagnosed with a genetic disorder. Now because of her minor tendencies towards hypochondria, I remember calling then-girlfriend Alana to pass on the news, although with a bit of skepticism about the whole thing. That time in my life was a massive series of seismic chaos that included my parents divorcing, Mom’s diagnosis, and even having to move to Saudi Arabia to find work. As I have always tended to do, I poured all of that turmoil and stress into some music. This EP of five songs—one for each stage of grief—was meant to be a way not just for me to process all of that upheaval, but also give a voice to Mom’s traumas. Furthermore, because I was also keenly aware of the troubling realization that I too might also share the gene, and that I might have to undergo the very same journey on my own later, I started to grapple with those terrors in the songs too.

Turns out, I was right. Although as the last track admits, back then it was still “too early to tell,” I was indeed already doomed. My own genetic destination had been fated, life was now just in a sort of paranoid holding pattern waiting for the symptoms to arrive.

When I began the process of revisiting my old albums and writing these extended notes, I knew this one would be the toughest. And it turns out I was right about that too. Reliving the truly worst moments of my life in what had been a raw and vulnerable piece of musical therapy was not a fun time. I had to chip away at it bit by bit whenever I had the emotional strength to do so. I was also doing all this while in the midst of my own new diagnosis and the traumas that entailed, and took a long time before I would finally finish that last song about acceptance.

But as I sat there, eyes closed, immersed in the music, I couldn’t express just how incredible I felt, as bittersweet tears poured out of me. It was like some long-term project had been finished, and I felt, weirdly enough, a sense of joy and catharsis that kind of took my breath away. I’d been planning to write this intro later, once I’d had time to recover from the experience, but literally just had to do it know, lest I forget just how incredible I feel now. Weightless. Grinning from ear to ear.

I hope that people will remember this as they listen to these songs that hold a special place in my heart. The confessions ripped straight from my diary then and now may not be as fun to share as my other more joyful works, but I promise, the journey is worth it. We’ll find acceptance together.

(I recommend listening to these songs on headphones.)

Nostradamus

Denial

Mom, a nurse, had what was in our home (lovingly) called “article-itis” because she would read about new things that we should or shouldn’t do or eat and then those changes would happen in our lives, like having to eat towers of raw veggies with every meal, suddenly having bran appear in EVERYTHING (not just muffins and brownies, but also one time, scrambled eggs!), or giving us mineral oil every day for our bowel health. For her, every single potential symptom was potentially a serious thing to assess or test. This meant that I was sort of used to her feeling like someone in the family had something grim to monitor, but as a kid it just always felt like making mountains out of molehills when it came to health. Therefore, when I was about 20 and got the call from her about the diagnosis of this new and very serious disorder, I remember calling my then girlfriend Alana about it, telling her that Mom thinks she’s got something terrible again, with an eye roll. As something I’d never heard of or understood at all, I remember that dismissal of her problem feeling like the obvious response to what clearly must have been some overblown issue that would be sorted out soon. In retrospect, here was obviously a great deal of shock involved; the thought that she actually DID have something so serious was just too much, it couldn’t be true…but it was. She was right, and it meant that we had to deal with it now too.

This song therefore is less about her own reaction to her diagnosis but mine. It was the first time I’d ever tried to do an a cappella song and it turned out just perfectly. One voice slowly emerged out of the darkness to sing the brief 6-lines about Nostradamus, the 16th century French prophet who claimed to see the future. Next the main melody gets repeated over and over again while gradually a chorus of other harmonies are added. With one last plaintive intonation of “You must be crazy,” the song ends, leaving a lot for the listener to consider already. Despite its traumatic origins, this track, with its very short pithy lyrics and striking choral arrangement remains one of my absolute favourite tracks, and it gets the listener excited for whatever will come next.

You must be lying to me
You must be lying to me
You’re either crazy or you’re crazy if you think I’d believe this

I’m only trying to see
The illness deep in your dreams
With your predictions of afflictions just like Nostradamus


Deaf Ears

Anger

Our family was really not an angry one. We got along well and when there was conflict it was usually a fairly short-lived and quickly reconciled event. My own experiences with grief for Mom and myself have been largely I think directed at issues that arise during the process, like having to go to these lengthy yearly visits to the clinic or some similar inconvenience rather than any bitterness about the disease itself. In fact I remember feeling like the waiting room at the clinic was a place where everyone with HD was talked about, but never addressed directly. People who struggled to communicate where just cut out of conversations and decisions, and that felt to me like it was just really a shitty sort of status quo to have to resign yourself to. This song envisions what it must have been like for those people—and eventually Mom—to have all their loved ones and doctors and so on just sort of forget about the basics of our human need for social interaction, to talk around or about you, but never, tragically, to you directly. I know that as HD progresses, you are less and less able to respond and communicate, leaving you trapped in a body that can hear but not speak. The idea of having to deal with that while stuck in the endless bullshit of a people forgetting that basic conversational etiquette makes me plenty fiery already, even though we are clearly still guilty of it from time to time.

On an EP that has some of my absolute favourite and deeply resonant songs, this track has always felt to me like a compromise, because honestly, it is essentially a demo of the concept that never got finished. I so wanted to have a Phil Elverum-style doom metal slow burner with alternating quiet, almost whispered parts that suddenly erupted into a massive wall of raw chaos and distortion, and you can see the basic structure of that represented here. However, because I didn’t really have any access to big amps or anything, this song is all quiet, no screaming, no electric, no rock drums, just uke and my own finger-drum fills. I later considered a rerecorded version called “Deafer Ears” that might come closer to the raw intensity I had envisioned, but in the end just felt like this kind of meh song is still good enough for its place here, regardless of the higher hopes I had for it originally.

Hardly knew me
There never a reason to know
Hard of hearing
You turned off the tape
So I turned off the microphone

An adjunct reluctant to bring up the past
A seat at the table is all that I ask

More than a footnote on tidy contracts
A seat at the table is all that I ask

Listing elaborate need overlaps
A seat at the table is all that I ask
A seat at the table is all that I ask

I’ve given everything up with a smile
You think you’d invite me to stay for a while

Instead of this feigned ignorance of the task
A seat at the table is all that I ask
A seat at the table is all that I ask

I’m sorry we didn’t talk, and I’m guessing that it’s my fault
I’m guessing that it’s my fault


Hypochondriac

Bargaining

When we were kids Mom was a nurse with some very interesting and radical attitudes about health and nutrition. For example, she would always try to follow the latest in research on lots of topics, and eventually some very admirable patterns formed in the house around those. At meals there was always a “flag” of raw vegetables (cauliflower, broccoli and carrots) that had to be eaten. Because of the “fat is bad” mandates of the time, our house was packed with non-fat options to eat or recipes to cook. I remember so clearly learned that pickles have no fat and are therefore healthy, as well as one of the family favourites, angel food cake, which really was more of a poor summation of the science in her time than a personal failing of hers as a nutritional advocate. She was also convinced that nothing was more important an indicator of health than poop. To Mom, bowel health was a reflection of the health of the rest of the body and mind. We talked about poop constantly, and that was the norm and so we never knew it was weird until much later. Alana remembers meeting Mom for the first time, down in the basement watching a movie, and Mom asked me directly if I was regular, I said yes, and she was thrilled to hear it and walked off. Even weirder though was when we discovered “poop journals” of our early days as babies. Mom had sketched and taken detailed notes about it when we were born. Normal for a nurse, others told us. However, as we got older we remembered getting ice cream with mineral oil mixed in almost daily in order to stave off any potential constipation. Again, less normal, especially as a sort of blanket thing to do every day “just in case”. That really did sum up Mom’s views on just about everything. When in doubt, just do it, or more likely, DON’T do it. She was the best there was and I myself had nothing short of an idyllic childhood full of happiness and love, raised by a mother who had to do shift work and had all these other pressures on her, and yet never missed a single game or event, not even once. She was incredible, a loving person who never thought twice about sacrificing everything she had for her family. That’s how I remember her. That, and that bowel health truly is mental health.

This upbeat bluegrass track uses big major chords to tell a very melancholy tale. Like Nostradamus, this brief song also has just a few lyrics, but for those words cut really deep. “Which symptom will be the disease?” Those words rattled about in my head for years and years after finding out about Mom. Every time I broke a glass or forgot something or basically did anything that might have even slightly reflected her own decline, I would go into a little tailspin wondering if this was it, if this was “THE symptom” or not. Having Tourette’s and being young made that actually quite a bit easier to shake off. Alana had a way of calming me down in that way, which was always vital. However, as time passed I started to notice very small little things—eventually brain fog, but at first mostly movements or weaknesses in the legs when I would walk around—that just became these huge unreconcilable red flags. I knew testing was available, but I wanted to delay it until I was sure of the answer, and now, 1 year into COVID, trapped at home in this swirling abyss of emotions and doubts, I knew it was time to get tested. And, in the end, I wasn’t wrong.

Oh Lord, I would be faithful
If you’d put my soul at ease
Tell me what am I looking for
Which symptom will mean the disease?

Well I’ll listen for your response
In a heavenly refrain
Then I’ll amble on, singing this song
And never be doubtful again


Everyday Doubts

Depression

There was a period around the time that my symptoms were getting worse and I was deep in the black hole of depression for a long time. I had been excited to leave my job of 7 years and go to UBC for my BEd, and COVID just happened to overlap with that too. So for the two years of COVID I was largely working or studying from home, with a bit of time in the classroom here and there. That was also when the severity of the symptoms seemed to be marching ever forward for me and I had for the time really this growing sense of inevitability about the whole thing that could never be assuaged. So that year, I knew it was time to get tested. While I waited, I tried to avoid the worst of the more troubling and self-destructive thoughts in my mind, but there really was nothing that could bring me much relief except for the occasional distractions. I know Mom felt similar when she was divorced and diagnosed around the same time. It was a very awful thing to go through, and there was never any guarantees you’d reach the end of it, but, what choice did you have?

With its slow picked minor chords and mournful tone, this song really did capture a lot of the darkness and fragility of this penultimate stage. The lyrics in particular referring to the “black curiosity” and the “everyday doubts following me every day,” lines that perfectly outlined the numbness and unhappiness that pervaded every second of every day around that time. And when I or someone else tried to find the bright side or even try to find other sources of those symptoms, some other possible explanation, anything except…THAT…and yet finding of course nothing but more painful horrible truths.

Blended dreams
Of two different futures
If the mind is measured

Altering
Interpretations
Of mistakes as fissures

The tendency
Of genuine aversions
To solitudes around.

So ignite me
Until black curiosity
Fades to the foreground

And I’m cast away
Into the river
Left to drown
To freeze and shiver
No
Tossed around
By the everyday doubts
Following me every day

Imagine my surprise
Clarity multiplies
When I see the signs
Again and again and again and again and again and again and again

Punctuating
Re-inflating
Devastating
Make believe

Suffocating
Invigorating
Demonstrating
How to fool me


Diagnosis

Acceptance

I wrote this song not long after Mom got her own diagnosis, and although it doesn’t mention her explicitly, for me, our spiritual connection was so deep and resonant that it didn’t require any other explanations. This song—one of my first written on uke—was what I still call to this day, my best. This is partly because of the gentle but raw performance and harmonies that make it soar at just the right moment, but more so about the lyrics themselves, and how they say so so so much about how I felt at that time. The sort of acceptance I finally felt over dealing with Mom was a complicated concept. At times, it was easy to for Alana to remind me that it was, in fact, “too early to tell,” a potent mantra that spoke to my own latent uneasiness so powerfully and effectively that it carried me for years and years after. However, as I reference in My Ship of Woes about “crumbs” I’d left as clues to follow, that line became a double-edged blade a it became more and more painfully traumatically clear that it was no longer too early to tell anything. I had darkly predicted where I would end up eventually with my own diagnosis, and my prophecy came horribly true.

And as I’ve already explained above, or in Ship, as the symptoms began to drown out any other thoughts and I knew, 100 percent, what was the cause, I went into that darkest possible scenario that felt like no future could possibly be worth it anymore. However, after months of starting the process and sitting on my couch getting my results over Zoom deep in the middle of the already fraught and isolating pandemic, I was a bit startled by my reaction. Afterwards, I was smiling. I was happy, happier perhaps than I had been in years. It was weird. I think there were a lot of factors here, mostly the idea that I’d been sort of processing the grief and trauma since my got her own diagnosis, I’d always known it was a possibility, and so I truly was pre-ready for that confirmation. However, I think it was also largely a sense of knowing what was wrong that to me felt liberating. As opposed to having to explain to people what was wrong, how I was feeling, and then dealing with people trying to comfort you or offer suggestions on ways to cope or whatever. My rule had been that I wouldn’t get tested until I knew 100 percent what was wrong, and for me, that was exactly what happened, why I knew I had to know. Because, sadly, I did know already. 100 percent. But now having had it confirmed, I felt like a weight was removed from my chest that had been steadily growing more and more burdensome for as long as I could remember. I had a similar reaction when I found out I had Tourette’s. For whatever reason, having a name for it and a strategy to move forward was liberating then and somehow, liberating now. It was a tough to get to that point of liberation, but I couldn’t have been happier to get the news when I did. Even more of a relief was also the relief itself to be unchained by past uncertainties. I was free. I am free. Life is good.

The moment when I loved you best
When you asked me where we’re going next
No holds to bemoan just the whole earth to roam
Cause with you any room
Would feel like home

We returned from our wedding in May
To a life that was threatening to swallow our days
Remember when we would watch shit on TV
And pray for the day when we’d
Finally leave

We had what we wanted at first
But our ominous fortunes kept predicting the worst
Visions of minds that would start to unwind
The gross diagnosis
We may not have much time

There’s no point in waiting
Watching the clock
Counting the days till the ticking will stop
So before we’re betrayed by those
Fallible hands, let’s
Abandon the doubts
And seize what we can

It may be too early to tell
But I know that I’ll always be needing your help
To plan our next trip or wipe drool from my lip
Still I hope I can help you
To get by as well