Part of me has always wanted to be a camp counsellor. Two summers ago, I spent a week at camp as a one-to-one support provider. And there’s a part of me that, yes, was right before going into that: there is a lot of emotional stamina needed to invest in the kids you are leading 24-hours-a-day, and sometimes, it is hard to have that stamina all day. To be able to pour into campers in a meaningful, patient, intentional way all.day.long.

When I saw a posting for a “camp coach” position at a sports day camp for ten-to-fourteen-year-olds with autism, I didn’t hesitate much to apply. I quickly heard back, chatted with the camp director on the phone, we met to talk (remember, my interviews never really end up being interviews properly) at a Tim Horton’s, and here we are a few weeks later, the night before the last day of camp.

Day camp is way more my thing, probably, than overnight camp. I shadow-ish a camper all day, I rotate campers every day, and we have fun. Mostly. Sometimes I feel like I’ve had successes, sometimes I feel like I do not know nearly enough to do this job. I’m learning. I alternate between “it’s only a week” and “I can’t believe there’s only one day left, it’s gone so fast”. The week was packed. I think today might have been the least packed day and really not even because we went to the trampoline park this morning.

I played dodgeball on a trampoline today. I bowled with the other coaches and totally lost with a 91. With bumpers. My camper from day 1 ended up being my camper for half of day 2, and proceeded to call me a monster both days, except he also hugged me because he was so excited about how awesome the bowling alley was. My camper today resisted a lot and then suddenly became a whirlwind of engagement towards the end of the day. I’ve argued. I don’t really argue in a way that is convincing, probably. Come into the gym for two minutes and see what’s going on, just two minutes. You have another minute left to play Lego. I played laser tag for the first time (I was 28 out of 29. I’m a professional). I’ve high fived campers for giving compliments to one another unassisted. One of my Special Olympics athletes is a camper this week, and I’ve had the joy of seeing him smile as he calls “Hi Kerri!” to me whenever I walk by. I played beanbag toss with my camper today for a long time after he tried so hard to get another camper to play with him, they just weren’t interested (it’s really challenging when all the kids have all these goals they want to/should complete and yet are supposed to engage with other campers to check the stuff off their lists. I’ve watched campers practice asking one another to play, practice complimenting each other, help prepare lunch, and test themselves. I’ve watched them be happy and sad and angry and jealous. Food has been thrown and hits have been thrown—and not just in Tae Kwon Do yesterday—and toys have been thrown and things that are meant to be thrown have been thrown. My camper on Monday was surprisingly fond of Shapes (the fitness centre). Camp songs have been sung. Hello, my name is Joe, and I work in a button factory. I’ve got a wife, two kids and a dog, woof. One day my boss says “Joe, are you busy man,” I say “No, man,” He said “Push this button with your right hand. Non camp songs have been sung. Call Me Maybe?! My team got second place in a cup stacking/design tournament and we talked about good sportsmanship again. I’ve felt connected and disconnected and frustrated and elated.

And I still don’t know if it’s for me, but you know what? I’ll never know if I don’t try and I’ll never learn how to be better if I don’t try either. So, one more day, I’ll keep trying. It could be the least or most challenging day yet. And I won’t find out until I jump in there one more time, and give’r. Because hopefully this week teaches the campers a handful of the things it’s teaching me.

At least tomorrow my camper is not taller than me. Unless he grows a foot overnight, anyways—and I might not even allow myself to be surprised by that. Guess it’s called Adventure Camp for a reason. Oh, and if there’s a place to forget to take my Concerta, I guess a camp is a pretty good place—even better when your brain can switch gears as quickly as the campers’.

A camper also told me the pink space car I made out of Lego looked like it was out of Cloud Cuckoo Land from The Lego Movie.

https://i1.wp.com/farm4.staticflickr.com/3690/20132442396_c4e0f7569c.jpg?resize=375%2C500&ssl=1

I’m not sure I see it anywhere:

But hey, it seems fitting. Pink fun and all.

Also I found this kind of disturbing .gif. While I’ll leave you with. Because WTF.

dinosaur and ronald mcdonald beat up batman, lego version. underneath caption reads

I was diagnosed with maybe-asthma seven years ago today.

Spoiler alert: I have asthma.

And basically all I did about it today was take my inhalers this morning, and wear shorts outside for the first time this year, and only realize it was my asthmaversary when I checked the date to write a post on Facebook commemorating my shorts-wearing. I then commented on my frustration that my inhaler flew out of my shorts pocket, because that seemed relevant to both points.

So mostly I did nothing about it. Except for whatever reason, much of my life at this point has been shaped by asthma. Not negatively, not positively, it just is. Just like it just is when I’m having a standard breathing day: not perfectly asymptomatic, not intrusive, a cough to remind me that my lungs are imperfect, and a couple hits of Ventolin before heading out to coach to hopefully keep things in check running around the gym… the gym I wouldn’t be running around in, probably, if I didn’t have asthma. Coming home to do the work and volunteer/advocacy things I definitely wouldn’t do if I didn’t have asthma. It just is, at least today, like any other thing: present, but not defining.

In seven years, I have not “grown out” of my asthma. But I’ve grown with it, grown through it. On Sunday, I’ll head back to Toronto for a National Asthma Patient Alliance Executive Committee meeting on Monday and the Asthma Society of Canada’s Clearing the Air Summit on Tuesday, World Asthma Day. My friend Elisheva, the epic World Asthma Day party thrower, is convinced I’m having the coolest World Asthma Day this year (I have to go buy glow sticks, because nothing says someone let you be Vice Chair of the National Asthma Patient Alliance like glow sticks…). And yet, for the appreciation I have of so many things that have weaved their way into my story because of asthma—and for many cool things that have occurred and many friends I have been blessed with—I have to blame/acknowledge this day seven years ago. The day where I was handed a prescription for an inhaler, and then an inhaler, and couldn’t get any of the medicine in my lungs without an AeroChamber (I’ve mastered that skill since); the day after that; the days, weeks, months, years that have followed, of learning to coexist and make life better with this disease that, even through the surprise good things it has provided, I still hate with everything in me and I know is not going anywhere.

Over the past several years, I’ve chosen to be engaged and own my asthma—just like I choose to own everything everything else. I can’t pretend it doesn’t exist, but I refuse to let it define me. I may engage in a lot of things because of asthma, I may find myself a lot of places because of asthma (c’mon, I can’t turn down a good travel perk for asthma-related good things—also have Denver coming up in May), but I engage in more things simply with it along for the ride. I still get burned out sometimes, but, I try to keep asthma in the back of my mind rather than the main focus. In advocacy, I am rarely thinking about my asthma, but rather the spectrum that this disease actually is—advocacy is not about me: advocacy is about something far bigger than I can even attempt to articulate at the end of the day. However, most importantly, I hope that the ripple-effect of advocacy and all the things I do, and my friends do, both because of and simply with asthma, are not for nothing. I hope the collective we are making progress.

I realize that I will probably have this disease for the rest of my life—so, I hope that the asthmaversaries keep coming for decades to come.
And maybe on asthmaversary eight I won’t forget until 5:26 PM and I’ll have a cupcake. Or cupcakes. And otherwise do nothing special, because any excuse to have a cupcake is good enough for me, even if it’s just another day of another year of living with asthma, instead of at war with it. I can’t be my own enemy, so I might as well be awesome instead. Even if I have to be awesome and breathless on occasion.

 

PS. Clearly I did not do Blog Every Day April. I barely blogged any day in April, never mind every day. Also I was unsuccessful at NaNoWriMo. I tried.

Happy March! After a great day at goalball (my arm hurts from throwing! :]) and attempting to make things out of loom bands again (I mostly failed, I finally made a pencil grip), I’d consider this a strong start. Looking back on February, I’m going to try to one-up [at least!] all these numbers during March. It has more days, after all…

Blog posts: 8 (January – 11.)

Steps: 103,648 per intraday Fitbit exports; 120,915 per Fitline (these should be using the same data?!); 106,708 per Zenobase. (What did I pay for Fitline, then?!) Regardless: more movement needed. (Averaging 44 fairly active minutes per day, though. Cool.)

Tracks: Added to the running 2015 playlist: 4 (maybe 5).

Pictures taken: 467

The amusing thing is, it seems most of the sites I have set up to give me stats on such things… do not send those reports on the first of the month if it is a Sunday [or I just have things set to start the week on Monday. So… stay tuned for updates.

103,648

2015, well, like the end of 2014… It’s been a weird year so far. Here we are, nearing the end of February, and unlike how I ambitiously pounced onto soundtracking 2013 and 2014… This year has been much different. It’s like I started the year in either seven different directions, or none at all, and I still have no idea where I’m even attempting to go. Which feels pretty uncharacteristic for me, and I am not sure I really like it.

Which I suppose is why, we start the list of contenders here… with courage and control

Courage and Control – Brandon Boyd.

 

I thought I’d be on track again by the beginning of January. After the first couple weeks into the year, I found myself growing kind of despondent. I’d left 2014 with two of my descriptors—student and childcare assistant—lingering within it. It was a weird feeling, and not having a proper go-to-work job (or have “jobs”, but little/no work), left little to distract from those feelings as I often would do, also not having school to bury myself into.

The boulevard is bustling
A vast and wrinkled muselin
To hold over my eyes and
I know I don’t belong.
There is a noise inside of me
That bustles asymmetrically
Oh, how have I to balance
Those sounds into a song?

It’s time to let your hair down
and give yourself permission
It takes courage and control…
but you start by letting go.

Letting go is hard. Especially when your life is so absorbed in certain things/places/people, and suddenly, they are gone—basically fully, completely gone—and you’re left with thoughts rivalling both the moving part of a massive freeway and a gridlock.

The city’s an analogy
For things building inside of me
This chaos and this discourse
Still we move along.
But chaos sings of symmetry
And all her words are poetry
And that’s the kind of city
Which I want to belong

I know there are better places, things, opportunities ahead. Accepting that the present is what it is, though, and there is little I can do about it. Letting go is very much active, not passive. In January, I finally let go of many things.

All i think,
I feel,
I see.
Oh, that this place
it’s not me.
I want to belong,
but be wild and free

Oh, he who asks
receives. 

And gained others.

 

Of Men and Angels – The Rocket Summer

Around the time I met with Richard in January, this song was rather constantly buzzing its way around my head.

Stop the press, everything a mess
You can look alive, but you are not at rest
and i-ideas, are flowing through your head
a million miles an hour while lying in your bed
A lucid life you never thought you’d lead
Are you working every day, are you working just to bleed?
I know, I know, I know, I know, I know.

Right here, this can be what ADHD feels like. I’ve continued to embrace and grow in my ADHD diagnosis so far this year, and it’s been interesting (another post for another day :].)
This next part, of course, echoes back to the leaving bit of 2014… Because as much as we try, our past is part of us (and, I wouldn’t want that any other way, either).

[…] And feeling you deserve what you heard
But it doesn’t go that way

The rest… Enjoy the ride:

Oh, the tongues of men and angels
I speak like, love, oh love, will I stab you in the back?
Working every day, I forgot to show
What’s most important
—Love.

Here I am, dear Lord,
Tasting hints of fame
I don’t want it anymore
If it’s not You that I gain

Wanna fall at Your feet
Don’t wanna fall from Your peace
I understand.

Have you ever been the man that just ran
When you knew that God was talking?
Have you ever heard His voice through the noise
But just let it get away?

Oh, the tongues of men and angels
I speak like, love, oh love, will I stab you in the back?
How come I go with mine instead of Yours
when Yours is always right,
I’m sorry
, just pour into me
—Love.

A heart at rest is harder now
Don’t let it go away
Hard earn pay, or hard earned pain
Right now they’re just the same
What’s the use, why work so hard
When it’s not what you crave?

When what you need is love.

I also was part of a discussion where I watched a friend lose a friend just by the fact that the friend didn’t believe in accepting love in all forms. And, when discussing love and acceptance, and writing questions on what church is… well, it’s a hard dose of reality to swallow that this becomes the outcome far too often.
 

Blankest Year – Nada Surf.

What do you do when you’ve liberated yourself from thoughts that were dragging you down?

Oh, fuck it.
I’m gonna have a party.

might be a pretty appropriate response. I reflected on the shit—‘cause as unfortunate as it is, it’s part of me—

I had the blankest year,
I saw life turn into a TV show
It was totally weird
The person knew, I didn’t really know.

Time don’t move,
We’re the only ones who do.
Bending reason
‘Cause it’s all we hold on to.

And… I choose how to respond to it.
And grow

[…] But you don’t own me, I’d like to return this spell
‘Cause it’s not my size—
And your lies are so much bigger than my lies
And your ties are made of things that shouldn’t make ties

Oh fuck it,
I’m gonna have a party.

 

Crashin’ – Jack’s Mannequin.

I wanna hear some music,
Now that they’re driving us all underground
Not the radio music
Or their satellites singing this
In this town…
I wanna hear some music,
And with the rock stars, all flicker and fade
Pop radio music,
I’m a ghost overground on, on parade

Crashin’ is a song that really comes down to finding/losing/gaining/discovering identity. 

And even if your voice comes back again
Maybe there’ll be no one listening
And even if I find the strength to stand
It doesn’t mean I won’t go missing

And my world will come crashin’…

And maybe that’s what 2015 is supposed to teach me. That I am not the things I do, I am the things that I am. And even if I am able to do all those things, it doesn’t mean the world will give a shit. I am the reason that I will stay alive (The Energy, AudioVent). The people around me aren’t who I am—I am.

Wanna hear some music
I have been waiting down here for so long
Trying to write this big music

With your breath in my face
But now… but now you’re gone

And my whole world comes down, down
And the words, and all the water on this broken town
The freeway’s just like veins without a heart.
[…]

And even if my voice comes back again
Maybe there’ll be no one listening
And even if I find the strength to stand
It doesn’t mean I won’t go on
And even if your voice comes back again
Maybe there’ll be no one listening
And even if you find the strength to stand
It doesn’t mean you won’t go missing

And the world will come crashin’
And the words will come crashin’
And music comes crashin’
Down on me…
And the words will come crashin’
Down on me. So down on me.

Down on you. 

I’ll get down on myself. I’ll get down on the people around me. But eventually I’ll find my words, my voice, my meaning, my place… again.

 

As it’s only February… I struggle to anticipate how the rest of this year will take shape. And I’m excited about that, that for once, this blank slate can be a gift… because for once, I have a blank slate and can choose to expect nothing. All of these songs might not be in the final soundtrack of 2015… but they’re part of the now. Of course, telling myself that I can expect nothing and actually doing so are two different things… because society, this world, expects different of me, too.

Through a series of songs, 2013 could briefly be described as “from the resolution to the avalanche”. It’s both accurate and backwards to how the year actually played out—here’s to chaos. Last year, I began the journey of compiling a “life soundtrack”—a project sparked by my friend Jay that aims to capture core moments over the course of a year through the resonance of music. 2013 captured many moments I’d just as soon forget: they are as much a part of me as any other, but I cannot listen to several songs on that soundtrack without intensely flashing back to places I was in that were not what I had hoped.
And yet, I think that is the aim of this kind of project, really. To not lose those moments that help shape where a journey began and remind you of where it progressed to—positive or negative, this is my life. And try as I might I can’t—and shouldn’t—forget those stories.

2014, however, rose up out of “the resolution to the avalanche”—New Horizons is the title of the first track on 2014’s list, and, the title is strangely reminiscent of a phoenix emerging out of the flames. I wrote in December that the themes of the final set of songs in last year’s soundtrack shifted more into a theme of recovery—if this is true, then 2014 became a theme of revival, knit in with recovery to an extent, but also a completely separate entity.

 
(The real track 11 is Without It by Mutemath, unavailable on Spotify) 

New Horizons – Flyleaf. January 2014.

so you’re tired, but you’re alive
so open up your eyes,
and you can get your sleep when you are dead
kill the clock inside your head

bring your normalcy to the edge and watch it drown
in new horizons.

“So you’re tired but you’re alive” was much a reflection to the shell of a life I spent much of 2013 living in; “you can get your sleep when you are dead” was the huge, forceful attempt to transition out of that. It was the attempt to remember that I did not have to continue living in my past, that it was done, and if it wasn’t, I had the right people with me. Despite this, I spent a lot of time reminding myself this year that I am okay. That every weird thing that happened to my body was probably just that—a weird thing. That started as soon as that clock ticked over to January 1st. It becomes hard to separate the reflection of attempting to separate myself from the intensity of what I lived through in 2013 from what unfolded in 2013 itself.
The killing the clock thing was actually all too real to me—there was another song by Andrew McMahon (I Need You [feat. Tommy Lee]) that had the line “and this ticking clock isn’t for me”, and around this same time, I had to really grapple with discovering that yes, I’d just gone through a bunch of shit that could have killed me, except it didn’t. And because of that, it was evident that the self-percieved metaphorical time bomb over my head did not kill me, and nor did it have to in the revival.

you said i’d only have to wait until i died
new horizon
there is no such thing as time,
inside this moment, no sun rising
wait until i fly…

when the times keep going wrong and we go right…

Shit happened, I lived, and I don’t believe in coincidence. That means something.

 

Circa ’46 – The Rocket Summer. January 2014.

This one actually has to be started a bit reversed. Monday, January 27th, I used this line from Circa ’46 as my mirror mantra—I had recently begun round three of anatomy, and in the process of trying to regain control of my life, this was especially resonant:

life will write the words, you choose your own melody 

On January 28th [after a discussion about hockey the day prior, I might add], my grandpa passed away—subtle signs preceded, perhaps, but, nothing that would have foreshadowed the quickness of the actual event to many of us. I was in the gym with my friend Sam when I got a call from my mom to come to her office, where she told me.

i started moving so i could sleep at night
i figured exhaustion would shut my eyes. 

The first line from the track quoted above, though, was really the one I clung to through this—once again, I don’t believe in coincidence, and that line enough was a very quick reminder of the less-tangible things I learned from my grandpa—and, of course, that I would love little more than to be a likeness to him when I’m old :). This song was not one that summated the entire experience [see next track] but one that I kept coming back to as one that more truly reflected my reflections on the experience—the good of being lucky enough to have him in my life for twenty-two-and-a-half years, and spending a lot of time with him, learning how he chose to create his own story in the midst of his circumstances for nearly seventy-nine years.

i said, life will write the words, you choose your own melody
yes, life has given me hurt, but i choose my own melody

and sometimes it’s that sad, sad song i’m singing all the day long
i’m just trying to find the right notes…


Light – The Rocket Summer. January / February 2014.

all i needed was a light in the darkest place
i’ve ever been in all my life as i try to find my way
in the changing seasons of my life, and my eyes don’t see
the things i love have run their course
are they done? are they just beginning? 

I remember putting this song on while driving to my grandparents’ house from the hospital. And on the way home with my dad that night. And on the way to the funeral home a week or so later.

i’m old enough to know time doesn’t move slow

I am, and have been for the last several years, at somewhat of a standstill with both any semblance of a relationship or real understanding of where I am at with God. Yet, I very intensely felt the resonance of this song and the surrender involved in it, and attempting to act on that surrender to make sense of . . . everything.

and i’m young enough to know
that i can’t ever be old not to trust You

higher and higher, i wanna go there with You
some say Your fire, Your fire is through
and i don’t wanna think that way… 
 

[Note the potential for duality there of simply un-capitalizing some God-representing Ys and simply recognizing that a person who is “gone” is really not gone so long as we remember what we’ve learned.]

I still feel like I am at much of a standstill in that regard above, and it’s also one that I am not sure I want to rectify, or when. I still don’t understand religion, I know I want a relationship and I do not want religion, I know I believe in both Jesus and God, and the connection but possibly not the sameness. I remember opening my arms several times and wanting to feel different while embracing these words, and yet, that block in me is still there, and I think it’s self made. [And no, I don’t believe in Satan or religion or biblical infallibility, and nor do I think I’m wrong in what I believe or how I choose to worship, and nor do I think God doesn’t think I’m not trying hard enough, so this is a reflective tangent but I don’t want to read any of that in the comments…].

i am Yours, do what You wish.
i am Yours, i am Yours, and i know this
whatever happens next, is in Your hands 

Yet, I still believe this as strongly as anything:

everyday there is a choice
and through the joy, through the pain
i will rejoice
.

And in the struggle, I chose this as much as I could without rejecting the reality of what was going on around me.

 

Guts – All Time Low. February 2014.

If a single song had to summate 2014, I think this would be it.

shooting for the stars
desperately reaching for something in the dark
pictures of memories buried in my heart
lie awake and dream of the endless possibilities
catch my breath and go for it
take apart everything that’s holding me down
make a point to pick a new direction,
to make a new connection.

Anatomy tried repeatedly to suck the life out of me. It felt like all of these things: unattainable; scary; determination; adaptation. My new connection, of course, was that with the associate dean of kinesiology who worked relentlessly with me to figure out a way to make this thing work. This also took the term self advocacy for me to a whole new level. I am, to an extent, used to advocating in terms of my health, but when it came down to having to work with explaining my learning issues to people, this was a big challenge.

is this what it feels like finding out
that i’ve got the guts to say anything?
feels like breaking out
when i can give up my reputation
finally i can see, honestly
i’ve got the guts to say anything.

bold enough to fall
flat on my face when i walk as they crawl

slowing down is just a waste of time to let go
tapping my fingers
to the rhythm of a metronome
counting opportunities.

take apart a gravity that’s holding me down
make a point to find a resolution
to be my own solution.

Through the whole process, though, I was freaking out that I was still not going to make it out: knowing that could have been the outcome even with all of the people helping me was beyond scary—because I needed my work to pay off not only for me, but because other people were giving so much to help me be successful. And on both sides there’s a kind of responsibility there.

if i’m gonna go down just let me go down
let me go down alone… 

Fear – Creed. March/April 2014

I think this song picks up, really, where Guts left off: working with and changing our own variables, and creating our own outcomes—regardless of what obstacles are in your path—for me, much of the time from January through April was focused on just making it through those last four months of my degree… to graduate. This was also a really intense period of self-acceptance surrounding my learning disability and ADHD diagnosis and reframing success and getting there—

the cradle of civilization sparks my fascination
truth ignites a generation to change what’s been programmed inside the mind […]

stay on top if they let you
‘cause the change is permanent.

The change this time was really that of mindset surrounding circumstance, not of circumstance or of mindset themselves: it was the combination of the two really gelling in the right environment, with the right people around—people who genuinely wanted to help me how they could to make it through the term—from anatomy, to the flexibility of my Health in Antiquity prof on a few occasions. All I really wanted was to get out of there, but get out of there as strong as I could. It was, however, knowing—or learning—that I was the one in control, and I can ask for help when I need it (“‘Cause I can see, honestly, that I’ve got the guts to say anything.”)

don’t you turn a blind eye: change what’s been programmed inside
staying silent is a crime

[…] change stops in your mind
leave the past behind, forget everything you know
make a change, let go

And that asking for help and redesigning my world to fit my circumstances… is totally okay.

Revival. Late April/May/June 2014.

Let’s get out of here
Walking outside, everything is feeling right […]Flashing by your brand new eyes it’s the first time
in so long, that you see, that you see you in the mirror. 

Six months after the completion of 2013, I finally regained some semblance of balance that I’d lost pretty much completely in the preceding year.  The day after my final exam of university (since I’d learned I’d passed anatomy), I got on a plane to San Francisco: a rectification for having had to cancel my trip to California in 2014 in exchange for hospitals, surgical procedures, and blood transfusions. And yet, I was still searching for clarity—trying to process what that year really taught me, since I cannot find reason for why it happened.

It’s been a bombs and guns and fire kind of season,
Oh, I need a reason for all of my bleeding tonight.
I’m gonna break it out, I’m gonna make a scene if I’m right
The electric light, we are tonight. 

We’re gonna make it.
I won’t forget this place 
No, I won’t forget you.
Let the revival rattle me
and open my eyes, and open my eyes
it’s so good.

Revival was much the theme of 2014—I will fully admit that I was stuck in processing 2013 until August 2014 (bleeding out and having my entire blood volume replaced by donors in the span of six months might do that to a person—I also found out in July that I have another fibroid and unless it starts trying to kill me again, we’re not change that). This was a piece of that process, knowing that I’d made it through the real shit—and I could make it through the rest—even if it was a process in itself; even if the revival rattles me and is an emotional process, it is still a revival.

 

After the Fire – Andrew McMahon. July/August 2014.

For the second half of the year, I have awakened to this song every single day: it is both triumphant and cognizant of struggle and chaos—and appreciative of the good things that can sometimes only be realized out of a clouded lens.

why dream? we’re breaking out of this machine
we’ll bathe the walls in gasoline and watch the fires go
we’ll burn this house, then raise the fence that keeps us in
the cabinets and the medicine, beds like boxcars in a row.

and when the wave comes sweeping,
the cold blood sleeping in your veins,
after the fire
the sun comes crashing through
a cloud so black and full of rain
after the fire 
i swear one day you would forget them locking us away
after the fire

Forgetting is a big part of it: not that I can forget the year that I left behind in numeric form, but more that I can for days at a time simply not think about it, not flash back to doctors offices and emergency rooms and IVs intensely. It took months to finally realize that no longer was I fighting my own body (well, or at least realize I was back into the capacity of not fighting my body AND the medical system to prevent death on a regular basis… my asthma didn’t get cured or anything).

locked in, the days will end as they begin […]

This line, and the first verse lines about fences and medicine, actually speaks to the daily theme of chronic disease—that it may affect many aspects, but not all, yet it is still present every morning and night… but unlike spending the previous year having too many waiting-game experiences edging closer to death than life, my daily reality is a coexistence—as in, I no longer feel threatened by my own body on a daily basis. Yet, the overarching theme of After the Fire, of course, is perspective.

we were dancing with the ashes falling
we were singing by the open flame
let it burn: tomorrow is another day.

I am blessed: Today, I get to try again tomorrow.


Burn Out Bright – Switchfoot. August/September 2014.

Driving through Minneapolis and the East Bay/central areas of California, I have clear memories of Burn Out Bright playing on my iPod while in Minneapolis, and going through my head driving with my friend Steve in Santa Cruz. Interestingly, once again, that the chronic disease journey above, the asthma and the blood transfusions, are the reason that I returned to the Bay Area twice in 2014—the second time, being for Medicine X at Stanford University—reminding me about the huge value that sharing our stories, sharing my own stories, has; reminding me of the people that I would not have ever encountered had I not been placed into this crazy story that’s unfolded in my 23 years that is my life.

All the while reminding me… that I am basically designed to be discontented—because I think once I’m content, I’ll stop growing.

does it have to start with a broken heart
broken dreams and bleeding parts?
we were young, the road was clear
young ambition, it disappears
i swore it would never come to this,
the average, the obvious
how i’m still discontented down here
i’m still discontented.

if we’ve only got one try,
if we’ve only got one life,
if time was never on our side
before i die, i wanna burn out bright.

a spark ignites, time and space
limping through this human race
you bite and claw your way back home,
but you’re running the wrong way.

the future is a question mark,
of kerosene, electric sparks,
well there’s still fire in you yet,
yeah there’s still fire in you.

[…] i can’t clean up the mess i’ve made […]

before i die, i wanna burn out bright

And yes, maybe the discontent leads me to do some minor risk-taking [nothing really too new in that department this year, though I still get in vehicles with people from the internet and share hotel rooms with fellow conference attendees I’ve never met :)], but I don’t know a better type of discontent than the kind that leads to connection.

Of course, as always looking back, I find some foreshadowing in this song (and also references to the past—“before I die, I wanna burn out bright” is a pretty good reference to leaving 2013 behind).

 

 Bruised, Jack’s Mannequin. Late August/September 2014

Of all the songs on my phone, this is the one that I have listened to on every single flight in the past two years.

I’ve got my things, I’m good to go,
You met me at the terminal,
Just one more plane ride and it’s done
[…]Sometimes perfection can be, it can be perfect hell,
Perfect…

This speaks so well to the end of adventure. Of going back home after spending 12 days living out of a hiking backpack, of 11 nights in hotel rooms and a night on an airplane. Perfection, well, what is it, really? Maybe for me it’s coming back down to discontent—returning home is bittersweet. There were good things on the horizon when I hit ground back at home after 12 days on the road, and of course, that desire for some sort of stability. Yet, the buzz of Minneapolis, then the chill of hanging out with Steve in California for a few days, winding down each night by myself in a hotel room, and then the constant stimulation that followed with Medicine-X at Stanford was the type of challenging discontent I’ve discovered I thrive on—challenging me to think bigger and explore wider. Among the most thought provoking aspects of the California part of this trip was just meeting so many people with their own battle scars and bruises, who are striving to create better things in their own worlds, and the lives of others.

I swear, I didn’t mean for it to feel like this, like every inch of me is bruised
Don’t fly fast, oh pilot can you help me, can you make this last?
This plane is all I’ve got, so keep it steady now,
‘Cause every inch you see is bruised.

I returned from MedX exhausted in the best way possible—in the span of 24 hours at the end of the trip, I went from the Wellness Room at MedX in deep reflection, to Google and Facebook, to find some sweet potato fries at the hotel, to catching a ride with Joe and Marie to SFO, nearly leaving my phone in SFO, getting three seats to myself and extra snacks from SFO to MSP, laying on the airport floor for two hours with a free Delta blanket and using the aforementioned hiking backpack as a pillow, and then finally falling asleep on my hour flight home. And, damn, I love that chaos.

I lace my Chucks, I walk the aisle
I take my pills,
the babies cry
All I hear is what’s playing through the inflight radio
Now every word of every song I ever heard
That made me wanna stay
Is what’s playing through the inflight radio

And I, 
And I am finally waking up.

 

Without It, Mutemath. October 2014.

A subject I haven’t written at all about is that I left my job—as of October 1st, 2014, I’ve been basically unemployed. It was an unfortunate circumstance, and leaving work itself was not the worst part: I also managed to lose multiple friends in the process. I completely understand the aspect of not knowing what to say, and I did no better trying to communicate through the circumstances. Three months later, I’ve basically shaken it off and am finally seeing new things on the horizon after three job interviews leading to no action, but the initial transition has been rather rough, even though the process of actually leaving went way more smoothly and amicably than it could have—because more than anything, I was from day one blessed by a team at work.

Here we are
Isn’t life bizarre?
It likes to take from us
and throw it out…
We’ll carry on
What’s done is done

Yeah, we’ll do without it somehow.

The world is gone
Don’t think about it […]They say the road is long,
Don’t think about it,
‘Cause life is short,
We’ll do without it.

We can move on from this
Don’t worry: the best we’ve known is yet to come
We can move on from here
Don’t worry: the worst won’t get the best of us.

I did nothing but my best, but I took responsibility for the circumstances that occurred—part of that responsibility was resigning. We all moved on: I just moved on in a different direction than I’d intended at that point in time.

This section of the song, though, once again reminds me of 2013:

Some memories are crippling:
Don’t let the disease bring us down.
There’s nothing else to know
Just let it go—
Yeah, we’ll do without it somehow. 

I contemplated resigning from my old job when I was sick last September (because yes, being sick definitely correlates with feeling guilty even though that is ridiculous). And now, I am healthy, graduated… and unemployed. Yeah, Fall is an accurate term for how that season went down. I’m rallying, but, there’s something about transitions all happening at once—the still-occuring recovery from the high of MedicineX, no longer being a student, and then, going from having multiple jobs as a student to having one very casual one doing respite a few hours a month.

Crazy. But obviously… a journey. 

(Note that while I listened to Hold Me Down by Incubus on the way to resign from my position on staff, and on the walk home, there was too much animosity within it to use it as a truly reflective piece—“The road is long, the trees are orange and brown, I’m not afraid to leave this goddamn town, I’ve had enough and God I won’t look back, I’ll walk awhile along the railroad track […] I want more than you can offer, I am off to anywhere but here, I keep walking so nobody can hold me down. […] I’ve had enough, it’s too much to live down […] but this place, you see, is trying to hold me down.” Much of it, I think, was trying to rationalize anything, in a way that wasn’t at all rational…)

 

Bridges, Farewell Fighter. October/November 2014

I’ve been continually looking for jobs since graduating (something my former boss, supervisors and coworkers were all aware off and encouraging me towards), so while I let up a little in early October to give myself some recovery time (no matter how good making the best of a tough scene is… it’s still not a good time to make decisions), I got right back on the ball within a few days.

Because no matter what they are, the experiences behind me are bridges to a better path—“there’s no map for this thing” (—Andrew McMahon), but all maps must have been made on trial and error at some point. Because I am still relentlessly optimistic, despite everything. Yet I cannot make sense of anything as of yet.

These red and blue lens glasses won’t assist me any more
Cause all of my third-dimension friends have all ascended to the fourth
And i have been hard at work, believe me,
Searching high and low for clarity
But oh my God, my eyes are so sore
:
I don’t wanna use ‘em anymore.

So is it worth the weight
I’m bearing that’s about to make my back break?
I’m ready to burn this bridge for a better way
And oh, hallelujah, let me go.
I guess I’m only human after all. 

As my friend Dia said once… “I can’t look back every day or I’ll never move forward.” So, I am once again choosing to move forward—and accept my humanity.

I used to have a flag to defend,
But someone just told me that conflict has come to an end
But there’s a new addition, a brand new mission
I’m just too self-absorbed to circumvent
“Well maybe you should just be more like them,”
Well, I guess I just wasn’t cut out to fit in.

[…]

Some may think the worst is worth the best of memories
And some fine day, the chance is high they won’t remember me.
But I’ll get mine:
My heart, my head, my hands will all be fine.
When will I know to draw the line? 
Guess I need a bit more time,
So I can lock it up safe inside my mind.

So if it’s worth the wait,
I’ll feel a little better when the storm breaks
There’s so much left to say.

Oh, hallelujah, let me go:
I guess we’re only human after all. 

There’s so much left to say: I can settle to be discontent—but I can’t just settle. And if I’m not cut out to fit in, I can deal with that—because that means I’m made to create my space not just fill one. The uncertainty will at some point lift, I’ve most importantly learned to forgive myself, and my heart, my head, my hands will all be fine . . . because I can accept my inability to completely control my circumstance—and I can accept I’m human.

 

i believe, Christina Perri. December 2014.

Thanks to To Write Love On Her Arms, I finally listened to/came across this song a few weeks ago (since I struggled to get over the “Hold on, I am still alive.” shirt, but struggled in a good way). And then I listened to it on repeat (because, “holy shit, are you in my head?” kind of happened for parts of it).

I don’t think much commentary is needed here. Just that sometimes it is important to become lower case.

i believe if i knew where i was going, i’d lose my way.
i believe that the words that he told you are not your grave.
i know that we are not the weight of all our memories
i believe in the things that i am afraid to say.

hold on, hold on.

i believe in the lost possibilities you can’t see
and i believe that the dark reminds us where light can be
[…]

‘cause i have been where you are before
and i have felt the pain of losing who you are
and i have died so many times
but i am still alive.

i believe that tomorrow is stronger than yesterday
and i believe that your head is the only thing in your way
i wish that you could see your scars turn into beauty
i believe that today it’s okay to be not okay.

hold on, hold on.

this is not the end of me
this is the beginning.
hold on, this is not the end of me
this is the beginning.
i am still alive.
this is the beginning. 

Believe. And move forward.
Again.

believe.
we are alive.

Full circle:

“So you’re tired, but you’re alive, so open up your eyes and you can get your sleep when you are dead, kill the clock inside your head.” —New Horizons, Flyleaf

“hold on, this is not the end of me, this is the beginning: i am still alive.” —i believe, Christina Perri

Own it—wherever we’re at, no matter the chaos… we are so fucking alive.