advocacy / asthma / health advocacy / life

owning asthma: seven years… and counting.

• by kerri

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.

life / writing

productivity, yoga pants, and camp nanowrimo

• by kerri

Good morning, April.

[That sounds like I’m writing to a person instead of a month.]

Somehow, this morning I was out of bed by 8:45—miraculous, really, as I shut down SleepCycle at 8:32. I proceeded to eat a chocolate chip cookie, and sit down and write 555 words. By 10:30 AM. While still wearing yoga pants. 

I’ve just smashed a theory here, people. My theory was “I can’t be productive if I’m wearing sweat pants.” (Unless per chance yoga pants are a magically productive form of sweat pants?).

Through university, I also had this thing in my head where I could not wear sweatpants to class unless obviously a) I was in the gym for class, b) I had a lab (which would have amounted to either a physical activity related lab OR anatomy lab. Anything goes in anatomy lab, really.) or, on very few occasions, c) I was sick (and by sick, I mean actually sick—like on prednisone sick, or I-went-to-class-the-day-after-emergency-surgery sick. Not “Real People Sick”). Sweat pants were also allowed in exams, of course.  Except the one time for my Sport Psychology exam (my last ever exam) where I wore my Boston Marathon jersey from Steve and tried to wear sweat pants but that was actually too comfortable, so I put jeans on before I even left the house. Can’t be too comfortable in an exam—the Boston jersey had just enough proper vibe for sport psych. (This was also the exam where I got a whole freaking classroom to myself because of accommodations, except unlike the usual testing rooms, it had windows. I’m sure I stared out them for a bit.)

Anyways, it’s Camp Nanowrimo time, and I am (as I was in November) trying to complete Nanowrimo. 10K words in 30 days. (Completing Nanowrimo is called winning. Except as I learned in sport psychology, and other classes, survey says kids say that having fun is more important than winning, so I plan to have fun?). Perhaps to add to the success is being in Camp Nanowrimo Cabin with 11 others attempting to write young adult books this month.

Maybe if I get ambitious (and keep up the momentum towards 1,667 words per day), I should Blog Every Day April along with NaNoWriMo. Too much? Probably. Though last night’s post did go up at 12 AM, so I’ve actually done two posts today.

life / music / quotes

content in discontent.

• by kerri

things are looking up, oh finally.
i thought i’d never see the day
when you’d smile at me
we always pull through,
oh when we try.
i’m always wrong but,
you’re never right.

I have said before that I am often more content when I am on the road, away from home, than when I am here, in this nucleus of familiarity.
What happens, though, if the road gets familiar? The road feels like home. The lostness increases yet, is no longer lostness but foundness?

honestly, can you believe,
we crossed the world while it’s asleep?
i’d never trade it in,
‘cause i’ve always wanted this and
it’s not a dream anymore,
it’s worth fighting for.

My life has recently started making a bit more sense. I have work—and more impending work—and travel plans and a slightly straighter direction for my ambition. At least in the next two months with the road/the air in my future. I can no longer linger in my distraction, yet channel that energy into creative pursuits: writing, being, creating. Creating my life.

could have given up so easily
i was a few cheap shots away
from the end of me.
taking for granted most everything
that i would have died for
just yesterday

I feel like I write about the same things all the time—and I think, to an extent, I have been for longer than I have really realized.

we age more slowly when we move quickly versus standing still.

John Green 

Writing on the problem, the frustration, the constraint of stillness—of routine, of not embracing chaos. Lostness is chaos. Movement—or lack-there-of. I’ve reiterated—recently—about lostness. The joy, specifically in the past, of being on the road—or in the air. The chaos of losing much, if not all, routine.

The chaos is beautiful.

Because there is nothing to anticipate when you are lost, beyond becoming found. Lostness is uncharted territory. Unfortunately, it is also not sustainable—or, not self-sustainable. Eventually, you become found in lostness. It’s chaos no longer welcoming. I don’t want to get to that point.

I want to keep moving. Forward. Dynamically. (I suppose static moves as well, just it doesn’t go anywhere. The current does, but the static itself does not.)

I spent the evening watching a season of Roadtrip Nation. One time, my friend Tara said her sister wanted to have the experience of living in a van. Well, an RV is kind of like a giant van [sort of. If you are creative or squint or whatever]. Since that point, I shared that desire. Because that sounds awesome.

[…] we’re just getting started.

looking up, paramore.

There is a certain chaos associated with being on the road. [And, to a different sort of chaotic vibe, in airports. And in the fact that airplanes involve people being in the sky.]

Opportunity is finding its way to me, perhaps. But I feel like I am standing still. I need to find my way to it. And the typical road maps to that aren’t working anymore. So where do I find the atypical ones? Maybe, in that confusion, in that chaos.

And I hope, to a deeper level, I can make that chaos a part of my future plans. In exploring this lostness, explore my world, too. I can dream. Maybe I’m only now realizing the truth of that statement.

I can dream.

And that can
become
something.

life / on the road / work

nouns: people, places, things.

• by kerri

Things I’ve done lately:

1) Taken some pictures and forgotten to blog them. [I did a 12 of 12, even.]

St. Boniface

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Assiniboine Park Zoo

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Minneapolis/St. Paul

2) Got another job that I still can’t start because for-good-reasons-red-tape.

3) Waited.

4) Read books. I’m trying to read 75 books this year (Overdrive + library access = awesome). Currently reading The Psychopath Whisperer by Kent A. Kiehl. (And The Art of Non Conformity and I’m Only Being Honest still. And a bunch of other things. I thought I liked paper books better than eBooks but I seem to get through eBooks more quickly, whereas Jeremy Kyle above just gets to keep hanging out.

5) Went to Minneapolis.

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Saw my cousin Dean.

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Saw his team’s concrete canoe. Ate cookies and pretzels in outlet malls.

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Spent a couple nights on an air mattress in a hotel room, ‘cause that’s how we roll.

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Finally went to the cupcake place on University (I think it’s just called Cupcake.)

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Ate this cupcake at 9 AM:

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Slept in the car. Ate an unacceptable amount of junk food.

And shared this crazy massive bowl of mac & cheese with my friend Scott when we went for dinner with Heather. (Scott called it a trough. Also it dominated us.)

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6) Watched The Jeremy Kyle Show. Damn ridiculous British TV that is actually amusing. More amusing than Maury for sure.

7) Hope I have done more than this. :]

life

my brain is a paper airplane: on creating art.

• by kerri

What did I do with my lostness today?

Created.

In Spring 2013, I bought a sketchbook. I was in the season of make yourself (it didn’t work out that way, at least not the way i planned).  Today, I finally tore off the plastic wrapping. Opened it.

Blank.
Pages.

I’m thinking about other things I heard about today
All this week and tomorrow.
And how these hands could create some better things for bettering, 

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but you see them now, I got my own things […]

I don’t usually draw things. Create things that could maybe be art. I don’t consider myself an artist, at all. Except, as I drew the piece above, I had this moment of I’m doing this wrong—and in the same thought—art can not be wrong. My fingertips dotted with Sharpie, I realized the reason that people make art such as this.

Cause you got your own things,
We all have our things…

I haven’t drawn in months. Drawing was a thing that I didn’t do till I worked in daycare. When I stopped working in daycare, I stopped drawing. I didn’t think anything of it, really. Drawing was just a thing I did at work, and not a thing I ever thought about doing elsewhere. Until my friend Bob started creating things. And I realized I could try that, too.

I guess my mind wanders off from time to time
sometimes I convince myself that all is fine…

I said try. I drew this using an index card and a ruler and copying off an embroidery thing on Pinterest (yes, I said Pinterest. I still don’t really get that thing despite being a beta user. At the very least, while I am starting to get it, I don’t get the hype.)

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This paper plane is probably actually my thoughts wandering off…
That’s a cool thing, actually. My brain can go wherever it pleases doing this stuff and it actually does not matter.

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have the habits had you?
has it been for long?
can you feel the souls behind what’s going on?

—do you feel, the rocket summer.

The avoidance of the sketchbook from 2013, I suppose, had become yet another habit.

Habit broken.

I might be hooked. (I might want to find something less toxic than Sharpies—they’re probably bad for my asthma, but I also might not care.) I hope I am hooked.

i wanna feel everything, when everything feels wrong with me.

—save, the rocket summer.

Unlike writing, or music, there can be no wrong here. Look, even music has “accidentals”, people. They may not be wrong, but look what they’re called. 
Even if that airplane is geometrically imperfect and slightly optical-illusion-y and even if it looked like the Batmobile [note: I do not know how that would happen unintentionally], what it is is what it is about, not what it could be, or could have been.
 
In this space, state of mind, this process, I cannot be wrong.
What do we learn by constantly being right? Shouldn’t this be life? 
Challenging ourselves to feel more, even if not feel better?
Embracing discontent that we are not good enough and trying to be better,
Breaking the monotonous “perfection” we strive to live in because we’re scared of being wrong?
That, perhaps, is why I found some degree of meditation inside creation.

words are too messy,
and it’s way past time
to hand in my mouth,
paint my face white and
reinvent the sea
one wave at a time
speak without my voice
and see the world by candlelight

i ain’t afraid to let it out,
i’m unafraid to take that fall
but i have found beyond all doubt
we say more by saying nothing at all

—pantomime, incubus.