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.

On the 12th of the month (for many many months), I try to take 12 pictures of my day and blog them. [Sometimes I forget to blog them.]

Here are my pictures for February 12, 2016.

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7:08 am – bedroom. Messy morning hair. Feeling like it’s an Addison Road t-shirt day.

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9:05 am – Starbucks. I really wanted an Earl Grey tea latte, which I had not desired in months/years, but Starbucks was out of Earl Grey. (I know… What?) This “Royal English Breakfast” tea latte is NOT the same. I went for brunch with Mindy after, and fortunately Stella’s could make me a London Fog.

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12:01 pm – Annex. Purrza… Persia?

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12:01 pm – Annex. Yes. Unicorn kitty (not Unikitty), eating pizza. Garbonzo’s, you never fail me.

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5:42 pm – kitchen. Quantified self-ing to get my priorities in-order. Optimized.

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7:30 pm – kitchen. Looking up recipes. [If you glance to that sugar-free tag in the URL, well, I’m still into sugar and not into fake-sugar. I do own Stevia however. And agave that I’ve never used.]

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8:42 pm – kitchen. Sometimes I try to draw stuff. This day, I tried to over-ambitiously draw a representation of the Farewell Fighter song I’ll Be Max, You Be The Monster. My drawing skills are lacking so it is far less rad than I wanted it to be.

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9:03 pm – kitchen. I drew an octopus, but got bored prior to colouring it.

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10:09 pm – kitchen. Here’s my computer background, the Manitoba Goalball logo I designed… yeah, all that non-tactile Braille and all. Still not sure my feelings on the pink with it, but too lazy to change it.

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10:39 pm – kitchen. Yeah, if you were wondering about that sugar free tag? I just made eggless single serve cookie dough. Because that’s reasonable. 

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11:40 pm – kitchen. I’ve got a minion living under my cereal dispenser. 

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11:55 pm – bathroom. I friggen love my Oral-B Bluetooth toothbrush. My mom however does not love that it creates a light show in the bathroom as it charges, so I have to cover the blinky lights with a cloth.

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.

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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