Back in February, I summarized the 2015 soundtrack so far. In reality, I didn’t add another new song until May—probably because other than travel, March was much a void, and in April I found more work and felt more of a semblance of normalcy—even just saying you have proper work plays into that—and as I’ll get into later, the stories for me happen in transition. I headed to Toronto at the end of April for goalball nationals, my first competitive coaching gig, and then returned in May for Clearing the Air. Then, it was off to Denver…
My Disease – A Skylit Drive.
awaken to the eyes of glazed humor
the haze in my somber eyes it burns so cold,
the things you wish you could know
What I thought on those return flights from Toronto and Denver was this: Chronic disease sucks—the community that can arise from it, though, makes it better. If I didn’t have asthma, didn’t candidly share that experience, I’d be a much different person today—for better or worse. And, there’s humour in it that only “sick people” get, and a world that only we understand.
as he enters into the world,
as a ghost
the terror inflicted scrapes your bones
let him hold you close.[Look… where… over there… fear me]
oh i see what you mean, step too close
see what i see—construct desire
the fine line between disease and what i needit’s exactly what it seems
the horror i love, the evil that beats inside me:
it’s called my disease.
All of the above: it’s a blessing and a curse. I may have friends and adventures gained from having messed up lungs and other sorts of shenanigans going on in my body, but I still face the reality that everybody with chronic disease does every day. I don’t know what that day will bring, I don’t know what the next hour will bring. Even when my health is stable, there’s still the lurking thought of when will the stability end? It’s not encompassing, but it’s still there. The community of people, the friends I’ve made, makes that tolerable—but even in the good, the amazing, there’s still a kind of evil inside my body that I have to make a commitment everyday to coexist with so that I can continue to own it. A choice so that “evil” does not crawl into my mind and make me more cynical than I already may be somedays, and more importantly, keeps me seeing my circumstance for what it is, rather than what it could be tomorrow. I somehow got a reputation for positivity, and damn it, I’ll keep trying. While everything I chronicle here is the truth, like I said in 2013, there are still “stories I will never tell”, or I will never tell in as much detail as maybe they deserve–there are some stories I’d rather forget—even though I can’t.
The possibility to do good, why the travel opportunities existed to an extent, counterbalances some of that. But it doesn’t make the other stuff suck any less.
Progress – MUTEMATH.
Progress was added to the soundtrack in about July, but really encapsulated April through August well. Work stuff started happening: I got a job with Tennis Manitoba (thanks for the recommendation, Sam!), as well as a more formal respite care provider position
pulling your confidence through
some courage is well overdue
i believe solely in all your promise
why waste a second in doubt
you could be helping out
keeping your head in the clear
I finally felt unstuck for a bit—looking for work is kind of depressing until stuff falls into place. Which can take forever.
[…] every moment of time’s just an answer to find
what you’re here for, what you breathe for
what you wake for, what you bleed for.
Certain things stick with you, no matter what, so every time I hear this song, I think of the above lyric, specifically “[…] just an answer to find […] what you bleed for”, and gently (usually) flash back to the whole situation of most of 2013, and, while maybe I haven’t figured out that whole effing scene, at least I can see how far I’ve come.
everyone’s counting on you
say for yourself what to do
life is a card that you lay down sometimes
to search for the best way of all
is finding the best way to fall
keeping your head in the clear
Sometimes I feel like I don’t know what direction I’m going. I wrote before that I was okay with this—now, I feel like I’m finding the best way to float, not necessarily to fall. Falling means taking risk, at least, means doing something—floating just seems passive. And I’ll admit it: some of the progress has been passive.
every moment of time’s just an answer to find
what you’re here for, what you breathe for
what you wake for, what you bleed for.
what you hope for, what you live for,
what you’re here for, what you breathe for
what you live for,
what you’re here for, what you bleed for
what you live for…
Every minute I’m given is another minute to figure it out; another moment to make a choice to be mindful of even the most passive of things…