alive:living

When you have

your pulse and blood pressure checked. A blood draw. An EKG. Eyedrops and eye pressure checked. Bright lights shined into your eyes…

You know you are alive.

When you have

a dog lick your hands out of nowhere and rest his head on your leg. A conversation over coffee. Poutine, no matter how bad it might be for you. 11,359 steps on the Fitbit and counting. Excited hugs and high fives from kids. Coloured your hands pink with food dye and laughed, then fingerpainted with coloured pudding at work with three boys. A run in on the bus with a friend you haven’t seen in forever and you both jump off a stop later to go for Subway, a trip to Bulk Barn, and continue on to Toys R Us and Dollarama and CATCH UP. A silicone Lego ice cube mold arrive in the mail as a late birthday present. A million messages flying around about the plans for tomorrow and next week…

You know you are living.
I know I am alive, even if a little scarred.

And I know I am living. Fully.

soundtracking 2015 – march through july.

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 need

it’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… 

my chronic disease secret

Most of the time, I try to be of the voice that life with chronic disease can still be awesome.

But that doesn’t mean chronic disease doesn’t suck.

A couple years ago, my friend Chris launched My Diabetes Secret. An innocent question from him lead to a discussion, and then… to this:

My Chronic Disease Secret.

“A safe place to share your chronic disease secrets. No judgement. No shame. No stigma. Merely catharsis through honesty.”

I like this a lot.

Huge props to Chris for investing his time in setting up these projects.

Share your story. Even if nobody knows it’s yours.
Or if that’s too hard, share. Just read, even.
And keep going. If you need them, there are resources, people, who can help—even if you just want to type.

I hope you’ll check it out.

post secondary with disability or chronic disease: an introduction to accommodations for accessible learning

Diagnosed with learning and attention issues during my fourth (of five) year of university, I have said before that having my psychoeducational assessment done is one of the best things I ever did—next to that, was taking that next intimidating step to receive accommodations for the learning and attention issues that were brought to my awareness in a clinical fashion no more than 24 hours earlier. I have nothing but good to say about my experiences from that point forward receiving accommodations as a student with a disability. The other day, my friend Jenni posted on Facebook about her apprehensions surrounding taking the advice that she contact student disability services at her university.

While not intending to reinvent old posts (you can read those here), I’d like to summarize [or expand] the conversation I had with Jenni in the form of a hopefully usable rundown: of the help I have, or have heard first-hand stories of, people receiving from their post-secondary institutions, so that students with a variety of disabilities can consider for themselves whether or not these may work for them, and see if their campus offers such accommodations (or would consider adding them to their options).

Intimidation is normal.

Perhaps students who have been dealing with accommodations for their whole lives will feel more at-ease discussing their needs to university staff (I’ll be using the term university, but this applies to all post-secondary institutions)—or, it may be intimidating to move out of the familiar school system and into navigating the post-secondary environment. From my experience speaking with students newly accessing accommodations in university, these students can often feel very intimidated to take the first steps OR to self-advocate.

Self-advocacy (or, simply, sticking up for yourself and communicating what you need!) can be made more challenging with certain disabilities, or if a student don’t have much experience self-advocating. Accessibility/disability services staff deal with students with disabilities every day. If you don’t know what to say, that is okay. In my experience, I was simply asked questions so that it could be better understood what I might need to make my university experience more successful.

Bring Documentation

If you do one thing to prepare for your meeting with the necessary people on campus, bring documentation of your diagnosis. If you have a psychoeducational assessment report, bring that (they usually need to be done within the previous five years, but your campus may vary). If you have a chronic medical condition, or take medication that may affect your ability to learn, attend class, or sit in standard classroom seating, bring that documentation. They can’t help you if they don’t know what you’re dealing with!

Self-Advocate!

If you struggle to communicate your thoughts verbally (or freeze under pressure), you might consider requesting to make accommodation arrangements by e-mail, or provide a list to the person you are meeting with what areas you struggle with or ideas you have. Accommodations are meant to level the playing field, not provide an advantage. With that said, I have had a lot of success with trial-and-error: “Could we try [x]?” “I’ve heard this work for someone else in similar circumstances, is that an option we could try?”

Remember, it’s about you, but it’s about forming allies—we can be an important word! It’s always worth a try: the worst they can do is say no—and in that case, you’re not any further behind than when you started, you’ve just learned more about yourself, your circumstances, and what might be able to be done in the future if plan A doesn’t work out. (Look, my plan C for anatomy wasn’t even my plan and it’s the one that ended up working—be OPEN and people will be open to your suggestions, too!).

As well, it’s important to be as transparent as you feel comfortable with: student support staff are trying to help you, and they have probably heard everything before anyways. Anything you say will be kept confidential, and if—like many of us—you are feeling overly emotional surrounding discussing your disability or chronic disease, that is okay. I know that I am not the only person ever to have cried in our kickass accessibility advisor, Jess’s, office, and I’m sure someone else has cried in there since I last did, too. The last time I wrote an anatomy exam (my last anatomy exam ever) I was visibly shaken up and Jess invited me in to hear office to talk before the exam—when I declined, she said that if I needed to, I could leave the exam at any point and go see her or just take a walk. Yes, we often don’t want to be vulnerable, but that vulnerability was what I needed to push me through that exam, knowing I had the freedom to take a break if I needed to—and that I was supported. People supporting students with disabilities aren’t afraid to think outside the box—don’t be afraid to encourage them to!

My university provided letters of introduction to students for their instructors/professors upon request. These were meant to start the conversation between the student and the faculty member, and provide an official way to communicate which accommodations were in place for the student in a clear way, without divulging information about the student’s disability. I used these for most of my classes, and was grateful for their existence—it changed a really potentially awkward conversation to “Hi, I’m Kerri [I e-mailed you for the syllabus three weeks ago for my alternate format texts…], I have this letter of introduction from accessibility services outlining the accommodations I have.” If I felt it was necessary, I followed up a few days later, because I’m an open book, but it was rare anybody asked questions—they kind of can’t.

Common Accommodations

Access to Food/Drinks

If you have a medical condition that requires you to eat at regular times to avoid negative health effects, it can be arranged to allow you to have access to these items immediately (or in a timely fashion—as my friend Teigan pointed out, it may be hazardous in some classroom environments, and plans can be made for this).

Allergy/Sensitivity Awareness

If you have allergies to foods, latex, chemicals (etc.), sensitivities to fragrances, or asthma, your campus may have accommodations in place to assist you in mitigating these things. If they don’t, suggest that they start: signage can be placed on doors of classrooms students with allergies or sensitivities attend to inform people not to wear/use scented products in these areas; the same can be done for severe allergies to food or latex. My campus also had a bank of lockers that were peanut free; our accessibility resource centre also aimed to be an allergen (nut, fish and scent) free space.

Alternate Format Tests

Refer to the next point to see why the S is underlined!
While it may be obvious that a student with a visual impairment will most likely not be doing a standard written test, it may be less obvious that there are a variety of formats they can use to complete the same test as their peers—including large print, computerized versions [text-to-speech technology and typed responses], orally through use of a scribe… etc.
Students who have trouble writing by hand due to learning disabilities or neurological/neuromuscular disorders may also use a scribe, type responses, or use speech-to-text software (ie. Dragon) to communicate their knowledge. For students with other learning disabilities, swapping long-answer responses for short answer questions or multiple choice might help to organize information better and help to communicate knowledge more effectively.

This is just a small sampling of test formats that may be available—which is why it’s important to talk with the people on your campus to see what they can offer you. 

Alternate Format Texts

Far beyond the typical audiobook, alternate format texts can be both used to provide a different format for students with specific learning or perceptual needs, they can also be provided for students who struggle with turning pages, or cannot carry heavy textbooks. Alternate format texts can be digital, audio, or Braille; eText provides the advantage (in my opinion) of being portable using a tablet, and being searchable. As a student with a learning disability affecting my visual memory, it was recommended that I use audio books—I found that these books were too difficult to navigate—if I spaced out, I had a hard time finding where I’d been previously. Using the iPad, I set it up to highlight sentences as reading was occurring so I could find my place and easily scroll back if needed. With that said, some people might find audiobooks more friendly to their own disability: which is why options are important, and experimenting should be valued.
In Manitoba, Alternate Format Texts are handled by Manitoba Education—if resources were already produced for students with disabilities, on occasion I had access to them without purchasing the physical book; other times I needed to have a receipt for the book, or provide the book myself to have the eText created (students who wish to have audiobooks in Manitoba that are not already produced need to provide two copies of the book for production), so it’s important to find out your school’s needs early on in the term so that production can begin—your late request is not their problem.

In general, some provinces/states and a variety of programs may cover textbook costs for students with disabilities. It’s worth researching.

Assistive/Adaptive Technology

Computer access is commonly available for students with disabilities who need access to adaptive technology through the university’s accessibility services centre. These computers can offer print magnification, speech-to-text and text-to-speech programs (such as Kurzweil). An assistive technology specialist may be available on campus to help you explore which options may be relevant to your needs.

Extended Time (Tests)

Some students may need extended time on tests for a variety of reasons, including learning disabilities, ADHD, slow processing speed, or physical disabilities that affect writing speed. Extended time may be also provided based on circumstance (ie. people with diabetes receiving additional time to compensate in the event of a high or low blood sugar, or students with disabilities who need test time paused and restarted to take breaks to stretch/move or use the bathroom to ensure they are receiving a fair amount of writing time.

I had flexibility in adjusting my time accommodations—I started off with 125% (ie. received an hour and fifteen minutes for every hour my class had), but eventually adjusted to 150 to 175% for some classes, and 200% for others—it took some trial and error, but I was fortunately supported through this.

Interpreters

Students who are D/deaf and communicate through signed languages will require interpreters during lectures and tests to ensure prompts are communicated. (For the rest of us, remember to look at the person you are speaking to, NOT their interpreter!)

Lecture Recording

Using a tape-recorder or laptop to record lectures allows students with learning disabilities to return to lecture materials at their own pace. [I used Evernote to take notes and record at the same time. When I missed points, I glanced up and jotted the record-time into my notes to fill in later.]

Missed Lecture/Test Support

See note-taking next. If you have a chronic disease that may require you to miss class due to symptoms, medical appointments, etc., access to supports from the instructor/professor, as well as notes, can be crucial to being successful. Make arrangements BEFORE you need them! In the event of an unexpected circumstance  communicate with your instructors as soon as possible so they can help you catch up—being up-front, even without divulging too much information, helped me a lot when I got sick unexpectedly during two different terms. Meet with the instructor as soon as you are able so they can help you get back on track: most of them teach because they want you to learnlet them give you a chance. They can’t give you what you don’t ask for. Having a plan can also help you reschedule tests, extend deadlines, and help with group work—thanks to Rachel for these ones.

It’s also helpful to make friends in classes to share notes, study with, and, you know, have the occasional post-class eye-roll with.

Note-Taking

Many campuses enlist volunteer note takers for students who need note-taking support. This can be fantastic at best and horrendously unreliable at worst (or sometimes nobody volunteers—been there). Make sure you have a back-up plan, and if at all possible, try to take your own notes and use the volunteer’s notes to supplement. 

Priority Registration 

To increase the ability that students can attend class, students with some disabilities can register early for courses to avoid landing in sections that don’t jive with their symptom patterns or needs for accessible transportation. [Thanks to Teigan for reminding me of this one!]

Separate/Private Space for Assessment

Alongside alternate format tests, students who need it due to test anxiety, learning and attention issues, or medical needs, should be provided the opportunity to use alternate space for tests. Sometimes this means having students with similar testing needs writing in a room together, but among a smaller group (ie. 3-5 students who need a less distracting environment and also have an hour and a half to write a test); others it means having a completely separate space (with access to assistive technology if needed) to write in. I did much better with private space. This can also be implemented for certain in-class assessments [ie. lab quizzes] with adequate planning.

Seating accommodations can also be covered for tests (see next); additionally, my friend Riki has just shared that she now has a test accommodation to have dimmer lighting in her testing space (to quote: “because I like never really even thought that could be a thing but it is! And it’s fantastic.”)

Seating Accommodations

Students who need to should be able to pre-select seating for lectures. This can be for a variety of reasons, including vision, hearing and attention needs, but also for other reasons. When I was selecting seating, I would choose a front row seat, but by the door if possible so that if I was fidgety, I could slip out easily without disturbing half the room. Someone I know experiences anxiety when people are behind her, so she prefers to sit at the back. Students using wheelchairs will need a desk with removable seating; students with chronic pain may require different sorts of chairs to comfortably participate in class. Seeing the classroom and having a seat picked out and marked as reserved ahead of time can alleviate a lot of stress—plus it can be a great deal of fun when someone sits down at your assigned seat and is kind of being all “I wish I had assigned seating,” [maybe he had a need, maybe not…] it is kind of satisfying to be able to walk up and be all “Hi, I’m sorry, I need you to move” after someone is acting all cocky…

Study Space 

At least before I made a bunch of friends, I found the Accessibility Resource Centre a great place to study (then all my new friends distracted me, but oh well). They also offered testing rooms as study spaces if they weren’t booked—ask around, especially if you’re on a crowded campus like I was. This may be less of a problem for people who live on campus (or in the US where campuses are often gigantic), but for commuters on small campuses like mine, study space is at a premium.

Tutoring/Mentoring

Whether directly through their university or through grants, some students have received funding to receive tutoring. At the local community college, someone I know says he has tutor coverage up to a certain number of hours per term, and then he has to pay. Investigate the options. If you’re new to post-secondary, I would also ask around with the student support people if you are thinking a mentor might be helpful to you—other students with disabilities themselves are a great wealth of knowledge—and fun. 

Peer Support!

While not a formal accommodation, if your campus has an accessibility centre… USE IT! My campus had a few tables in a room and a computer bank for students with disabilities to use—I also met a ton of friends here, and had some of the best times I had at university in this room (…Shotput on the floor, much? Bringing cupcakes back from a cupcake run for the Accessibility Services staff, puppy playtime when my friend Gerry would let his service dog, Marcus, off his harness, seeing a business prof do a headstand—all of that and more. Sometimes disability perks happen, y’all!)

So yes, there are some unexpected bonuses—at least in my experience… but that could be because I am slightly a troublemaker? In a good way.

Make it happen.

Remember Riki up there—even if you don’t think it could be an accommodation thing, it possibly/most likely IS A THING. Don’t let intimidation or nervousness stop you—you can always quit accommodations if you really hate it (I don’t know why you would, but hey), but you’ll never know if you don’t TRY.

Have stories to share about being a student with a disability? Have tips to share that I’ve missed? [There are probably seventeen thousand.] Share ‘em below [or shoot me an e-mail if you want to guest post or just connect off the record!]

2014 soundtrack: from there to here.

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.