owning asthma: seven years… and counting.

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.

productivity, yoga pants, and camp nanowrimo

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.

content in discontent.

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.