Hawksley Workman

Chronic Pain Diaries “The Luckiest”

I’m lucky, I’m lucky, I’m lucky. It’s a mantra that I force myself to live by. I am lucky. I am well-adjusted. I’m okay. I repeat it every day religiously because if I don’t, if I miss a moment of it, I run the risk of revolving into something heinous. It’s a something that is a wreck, a destructive force that runs the risk of devouring my sense of ‘self’. I don’t know what I would become, but I can’t find out.

Because I am lucky. I am lucky.

Today is a bad pain day. I knew it the moment I woke up. My skin ached, my bones felt like they weighed a thousand pounds each, and my muscles pulsed. I know these bad pain days better than I know good pain days, if there can really be such a thing. I know them and I dread them because they bring me as close to the edge of the ruination of my ‘self’ as I ever want to come. I continue to remind myself, I am lucky, but somehow the words are more hollow. They echo in my mind, absorbed by the heavy darkness that infiltrates all my senses.

I am lucky.

I never understand how it happens. Yesterday my pain was awful too, but for some reason it wasn’t a struggle. My brain woke up, acknowledged the pain, and then kicked it into the back corner where other, more important things could overshadow it. Funny pictures, my Codsworth FunkoPop arriving, lovely emails from people I work with, dinner with the husband. It’s all good, everything is fine because I am lucky. So what changed in the eight hours of sleep (or lack thereof) that my mind, so irregularly wired to handle the concept of chronic, unending pain, now seems like a mountain I can’t climb, let alone reach the summit to plant my flag? Brains are remarkably fickle things, I suppose.

I am lucky. I am alive.

It’s so damn exhausting. On the long walk through the Plus Fifteen from where we park downtown to my office I listen to my Chronic Pain Mix. Songs that are dark, or peppy, or make me feel good. The Lament of Eustace Scrubb by The Oh Hellos; Alright by Pilot Speed; Safe and Sound by Hawksley Workman. They calm the sense of aggravation, of unease. Some songs are so melancholy, I could revert to a teenage frame of mind and think Yes, this song perfectly fits my mood. Some are so energetic, I wonder how I could possibly feel depressed. Because that it was it is. Depression. A big, black swath of angry, vitriolic depression that clings to me.

I am lucky, but I can feel it in my heart, like it is encased by a cloth that is too warm, uncomfortable. It makes me feel sick. And I can’t express it properly, because for over half my life now I have lived with this I am lucky persona. I thrust out my chest, I bang my drum, and I declare Look at me! I am lucky!

The drumming drowns out the little voice in me that is sad and exhausted by the weight it carries.  Lucky as I may be.

I am lucky.

I see others who are also lucky, but don’t know it yet. I speak to them and listen to their frustrations and I nod and commiserate, because on some small level I understand. Yes, it is overwhelming; yes, it is depressing. Yes, it is never going to end. But you will live. We will live. We are lucky. But there is the part of me that knows that I will never be part of their club. Like high school, like all the places I’ve worked, like any social circles, I sit on the periphery of this world because my day-to-day sensibilities do not lean towards sadness and anger and frustration, but relentless positivity.

I am lucky.

Chronic pain is lonely enough as it is. Social isolation is a monster. But to be isolated further from those who suffer as you do? Unfathomable loneliness that eats away at you.

Still, at least you are lucky.

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Extra Life 2016

It’s that time of year folks. Extra Life 2016 is almost upon us; 14 days and counting. Somewhere, in my brilliance, I thought I could make a $2000 goal. That was silly. I am silly. As it stands I am currently at $410 plus some change donated by my lovely coworkers. Not bad given that I haven’t bombarded social media the same way I normally do. If you’d like to donate to my Extra Life campaign, you can do so here. If you need some convincing, read on.

The What:

Extra Life is a 25 hour video game marathon that takes place every fall. Gamers around the world gather to play video games, board games,  and card games for 25 hours while simultaneously raise money for local Miracle Network Hospitals. I play for Alberta Children’s Hospital. ACH is my jam.

The Why:

I’ve spoken about my medical misadventures more than a few times. I haven’t held back when discussing how nasty chronic pain is, or how vital I have found music and books when it came to surviving my hospital experiences. When it comes down to it, a person can’t be expended to spend hours upon hours of their formative years in the same place with the same people, repeating the same experiences, and not develop some sort of affinity for the setting. For me, that has been, and always will be, the Alberta Children’s Hospital. The old hospital, now the Richmond Road Treatment Centre (Where my chronic pain clinic is now located, fancy that) became my home away from home. I knew its walls, its art work, its doctors and nurses and orderlies. I knew it better than I knew myself, and consequently found the earliest pieces of who I am grew and were nurtured in those walls, by those people. The old ACH holds a very special place in my heart.

It also terrifies me. Like, literally, I usually pee myself a little bit when I have to go back there. Three spinal surgeries with awful, debilitating pain will often create that negative connotation. And yet, for whatever reason, I also love it. Despite having only one surgery in the New Children’s Hospital (which will be celebrating its Tenth Anniversary this year!) I find myself still associating it as a home-away-from-home. It is still inexplicably mine, though I have grown so much older since walking through its halls as a patient. It is a place I ‘graduated’ from, phased out of, and in so many ways, it was the first place to dub me an adult. Sure, I had already graduated high school and gotten a diploma and could vote and had to do my own taxes, but only when I was told I could no longer go to ACH did I truly feel like I had grown up.

It was mesmerizing how sad I was to leave the hospital, to leave behind the nurses who had helped raise me in so many ways, and the doctor who had been like a father to me for the last seven years.

Growing up sucks, but growing up and leaving behind that was more difficult than any tax equation or ‘adulting’ I have had to do since then.

I love the Children’s Hospital. I hate what it represents in many ways; all my fear, my pain, my awkward youth. But I appreciate how I can now look back on it with wider, if not world-weary eyes, and see what it meant to me and how it shaped me into the woman I am today. That is why I take part in Extra Life. It is giving back, if only in the smallest way, to a place that helped shape me into the sarcastic, annoying individual I am today.

I couldn’t be more grateful.

The When:

November 5th, starting at 10:00 a.m.

The Who:

As always, Cheryl will be joining me for her own live stream! Last year I was pretty damn sick and I flaked bad on her. This year I am making it up. Because Alex and I are moving this monday, we will be having a pseudo-house warming party with some close friends who are invited to come over and play card games as a break in the evening!

The Small Details:

I’ve decided this year to try doing a single game from the start. Namely: Fallout 4. I’ve only done a single run of Fallout 4 so far, so I think it’ll be fun to start all over and make the biggest, sarcastic, jerkiest character I can. I’m going to call her Moira BulletStomper. Yeah.

I’ll be streaming on my Twitch channel here!

Tweets will happen intermittently here.

How can I help?

If you have a dollar to spare and you’d like to donate, you can do so on my fundraising page here!  Alternately, I encourage you to join in the fun! Tell your friends, get groups together, and use November 5th as an excuse to reconnect with some old buddies and raise money for your local Children’s Hospital. It certainly doesn’t have to be ACH! You can pick any hospital in any region!

This really is a wonderful cause. I can’t do sports. I am not so good at the mathing. I don’t politic or science well. But dammit, I can game, and I can write, and on November 5th I’m going to be doing it #ForTheKids!

As a bonus, here is my spine from… one of the surgeries. I don’t know. I’ve lost count.

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Chronic Pain Diaries V

I am bored. Bored, bored, bored. I could write, but I need a break from that. I have played my ukulele. I have tuned my guitar. I learned how to play every Soko tab I could get my hands on. I am so completely utterly bored.

I need a job.

The worst part about waiting to hear back from potential employers is the fact that a lot of that sitting around turns into stress, both physical and mental. Sure, I go for walks. I’m going for one as soon as this is finished. But a person with chronic pain can only walk so much. Or sit so much. Or stand stationary in a lineup while they wait to see what everyone else is waiting for (hint: it was a strip club).

This isn’t unusual really. Last semester when I had a couple days off in a row I had to be very proactive about ensuring that I was doing things that were at least slightly physical to keep my body going. I’m no stranger to going for walks even when I have bad pain days. I can deal with that.

But the mental stress? That’s another matter altogether. I recently read an article that talks about the mental stress that comes with chronic pain and how the average person doesn’t tend to consider it. Oh, your body is falling apart? That’s bad. But at least your brain is all hunky-dory, right? The article made a note of saying that studies show people with chronic pain can suffer from an intensity of emotions that can be a challenge to deal with. It’s not so much because they are stressed because of pain, and that stress causes them to go hot and cold at random. It’s actually a physical reaction to the way the neurons fire off at random. People with chronic pain are often overly emotional because their brains are forcing them to be.

I always reasoned that whenever my emotions were playing up I would do a set of things to calm them down. I would work on my giant blanket. I would write. I would draw. I would paint. I would play video games. Mostly I listen to music at a rate that is far too loud (so sorry Dr. Epstein!) There is something about absolutely blaring my Hawksley Workman pain mix that just takes me away. My brain stops firing neurotic pistons and pauses to take in the sound.

The stress of being bored and not having a job and waiting for beta readers to get back to me is certainly causing my emotions to run hot and cold. I know it. Poor Alex has to deal with it, and I know it isn’t always easy. Thank goodness he is patient with me.

Writing hasn’t worked. Neither has knitting or painting or drawing. Even video games are out of the question. With no other option left to me, I turned on Spotify this morning and started up my saved music. Anger as Beauty, embodying my frustration; Oh You Delicate Heart, reminding me that there is always some vulnerability, even when you have a spine reinforced with surgical steel; Ice AgeSmoke Baby, We Will Still Need a Song. They make me feel something other than frustration and pain. There’s a new song, a single from his new album. We’re Not Broken Yet. It seems the most appropriate yet. No matter the pain, the frustration, the deepening sense of hopeless sense, we’re not broken yet.

I am still hopeful that I’ll get a call back from one of the many jobs that I’ve applied to. Until then, I’ll keep walking, keep listening to music and playing games and nervously bite my fingernails while I wait for beta readers to get back to me. Mental stress can be as brutal as the physical, which is a monumental shame because if I don’t have my sanity, what do I have? (Hint: two cats, a loving husband, and this sock full of quarters for slinging at zombies when the inevitable rise of the living dead takes place and we need to flee to the mountains.)

An Open Letter to Hawksley Workman

When I turned 21 I decided I would make an attempt to write a letter to each person of note that had a substantial impact on my life through their contributions to the entertainment and media world.

I did not accomplish this. I had the best intention, honest. I was going to write to Stephen Colbert and Johnny Depp, Hawksley Workman and Chantal Kreviazuk, and a handful of others who I could point to and say “Yes, you. You influenced my life. Thanks.”

But I am an adult now, and a married woman, and I ooze of confidence and free time (at least until Block Week begins.) And after perusing Twitter and catching a reminder about the new Hawksley Workman album (which I wait for with bated breath) I figured, hey, I have the ability to put words into sentences and stuff! Let’s do it! So here it goes.

Dear Hawksley Workman,

Sometime, many years ago, I was channel flipping and happened to land on Much More Music. I watched, bemused, as a young musician frantically ran around the screen, attempting to track down various instruments and place them on an ark. The truly glorious moment came when this young musician arrived only moment too late to acquire an accordion. He watched, sorrowful, from behind a store window. The accordion would not make it to the ark. Alas.

That was my first introduction to your music. It must have been around the time that Lover/Fighter came out, but I can’t recall what year that was. I do know that it wasn’t long before my first spinal surgery. I was busy burning cds of this and that, music that I fancied that could keep me entertained during the long and exhausting nights where O2 alarms constantly set off warnings and nurses didn’t understand the concept of privacy. We Will Still Need a Song was my first introduction to your music and, because I was an adolescent who walked on the dangerous side of life, I decided to randomly download (sorry) some of your other songs and add it to my playlist.

I don’t remember much about my time at the Alberta Children’s Hospital then. I remember being made to stand up and walk only hours after they had fused my spine from T1 to L4. I remember being fed strained oats. I remember not sleeping and hallucinating images on the ceiling tiles. I had some trippy dreams during that first surgery. The nurses were concerned about me getting tangled in wires so the discman never saw the light of day. It was only when we were finally home in Kelowna that I listened to the music I had compiled.

I was smitten with your music right off the bat. It was just rock and roll enough that it suited my angsty persona, but quirky enough that I felt like I was part of a special club for premium members only. The cool kids listened to Hawksley Workman and had their spines fused. I was part of the elite. Hell, in my little world I was the elite.

Over the course of the next five years I had four more surgeries, each time involving the removal of tiny bits of metal or Harrington rod that had shifted and were no longer conducive to my ongoing health. Each time your music accompanied me along the way. The second surgery involved more sleepless nights and CDs crammed full of every song I could get my hands on. Every holiday or special occasion involved me asking for Hawksley Workman CDs or gear or tickets, any little touch of music that I knew could instantly sweep me into a different world where if spines were fused, they were only that way because of tragic accidents or stories of ultimate heroism. The world your music created around me was vibrant, coloured by a blending of your stories and my experiences. I could slip into that place without a care. It was heavenly.

I saw you perform live for the first time at MacEwan Hall at the University of Calgary. I was only 19, if that, and had just moved back to Alberta with my mom. She got me tickets and came with me because I had, I do not exaggerate, exactly zero friends in the new city. It was wholly inappropriate for her to be there, and I wasn’t yet confident enough to join in the dancing, so instead she and I stood off to the side, as close to the stage as I dared to go, and stared in wonder as you performed. The throng of students, not much older than myself, surged to the music and laughed as you regaled them with your wonderful stories. The whole time I listened I felt my mind buzz uncomfortably, as if it was reminding me that this was the music that had rescued me from chronic pain and hospital stays and it was absolutely possible to now enjoy it in the current setting.

To this day I still have a specialty ‘Hawksley Workman Mix’ that I listen to when I am heading to meet with my surgeon, or to an appointment at the Chronic Pain Center. I can fully enjoy your music outside of that context now, but it still holds a special place in my heart for those particular occasions.

The second time I saw you live was at the more intimate setting of the Memorial Center in Red Deer. I went with my best friend, who I had a serious crush on at the time. We were only five or six rows from the front, and sitting in front of us was a gentleman who was wearing a hat that must have come from one of your first tours. I spent a solid fifteen minutes contemplating how I might steal it from him and escape without being caught. The best part of the evening was the fact that you were sick. Sorry, but that’s one of the only ways to begin this particular anecdote. You were sick and in between songs you would pop a cough candy and tell a story. Totally understandable. But about halfway through the set you were apologizing and explained you needed a candy.

I’m not sure what overtook me then. Probably the fact that my growing up with British Television taught me that what you were noshing on wasn’t a simple candy and I felt the need to remind you of that. So what did I do? I hollered “It’s a Fisherman’s Friends!” (And they are awful).

And thus began a lengthy story about you and your brother growing up and fishing out at the family cabin. It was amazing. I felt like a hero to the crowd. The story was brilliant and if I hadn’t shouted you just might have not told the story. I felt extraordinarily special. And Fisherman’s Friends are awful. Like, just flat out nasty.

I took a Canadian Media course at the local college and wrote my final paper on your music and the influence you had on the Canadian music industry. I got an A+, although it may have been the mix tape that accompanied the paper that really sold my professor.

Eventually I started dating someone, and our music tastes differed greatly. He has never disliked your music, but simply isn’t a fan. Where I listen to you, Regina Spektor, Tom Waits and Vienna Teng, he listens (and indeed continues) to funk and jazz. Still, it indicated to me that he was a keeper when for my first birthday celebrated with him he bought us tickets to see you perform at Theatre Junction in Calgary.

Last year we went and saw you perform The God That Comes at the EPCOR.

Last month we danced to What a Woman at our wedding.

I guess what I’m getting at, Hawksley, is that your music has accompanied me throughout my life, starting at the most pivotal point, and has been ringing in my ears for the last eleven years. There is no musician who has captured my attention in the way you have. No musician has ever created such an eclectic array of albums that I could place at certain stages in my life and say “Yes, this is who I was right then. This music defined me during that particular epoch.”

Now I find myself entering a new time of my life. I’ve settled into adulthood (although I still like poop jokes and enthusiastically demand waffles from my husband on the weekend), and it is with excited anticipation that I wait for this new album. It will be the soundtrack for the “Kathleen tries to be an adult really hard” part of my life and end, I suspect, around the time where “Kathleen has to give up wine for the sake of pregnancy.”

I really like wine, so I hope whatever album follows it is full of everything glorious about your music: references to booze, women, and witticisms about sharks and ketchup.

Thanks for the music,

Sincerely,

Kathleen Sawisky

PS: Totally would have sent this as an actual letter, but unlike Stephen Colbert it is really, really difficult to find an address or anything for you.