Airports and airplanes are among my favourite things. Once those six-flights-in-six-weeks culminate, if someone wants to fly me away again, I’m down.

YWG -> YYZ -> YWG -> YYZ -> YWG -> DEN.

[…Denver yet to happen. Next Monday.]

First was Senior Goalball Nationals April 17-19th. We didn’t win any games, but, I heard from another coach that he hadn’t seen Manitoba score seven goals in a game for about seven years, so, I feel okay about that! Plus Steve, Gerry and I got free stuff at the new Yorkdale Shopping Centre Starbucks (they’re left of me in the picture, #1 and #9, respectively), met Dia for coffee, went to the CN Tower, Purdy’s chocolate, and the Lego Store!

(Thanks to Jamie for snapping this picture when she and Larry came out to check out the games!)

Then less than two weeks after I’d returned, I was back on a 5:15 flight out to Toronto last Sunday morning. The official purpose of the trip was to attend an all-day meeting of the National Asthma Patient Alliance Executive Committee on Monday, the Clearing the Air Conference Gala Monday evening, and the Asthma Society of Canada’s 2nd annual World Asthma Day conference on Tuesday—World Asthma Day.

Sunday.

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Goodbye, Winnipeg…

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Hello, Toronto! (Again!)

My flight arrived 25 minutes early—it was really only the beginning of Transit Nirvana: I checked my phone upon arriving at the Terminal 3 bus stop, and the bus would be there in 3 minutes. I got off the bus at Kipling Station and after a moment of confusion with an out-of-order track, I was on my way to Jane. From there, I’d planned to walk to Humbercrest United Church, but, because of Transit Nirvana, the appropriate bus was sitting outside, so, a transfer it was. Beautiful.

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This picture was my “I’m almost there!!!” text to Jess (below!), who I connected with on Twitter a few years ago. Getting in to Toronto at 8:30 AM on a Sunday meant it only made sense to go to church (…for the first time in two years :]).

(Getting into Toronto at 8:30 also meant that I was awake at 3:06 AM, thus the evident tiredness here!
Selfie credit to Jessica!)

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Listening to the choir warm up before the service! I may have also had Live’s “The Distance” going through my head here:

i’ve been to pretty buildings / all in search of You / i have lit all the candles, sat in all the pews
[…] oh, the distance makes me uncomfortable / guess it’s natural to feel this way / let’s hold out for something sweeter: spread these wings and fly.

I’d discovered while exploring where the church was that my grandma’s friend Alice lived nearby. After the service (interestingly, Jess spoke on John 15, which we’d explored one weekend at a youth leader’s retreat a few years ago—read: five years ago. How did THAT happen?), I met up with Alice at a coffee shop nearby for a couple of hours.

alice and kerri

 

(Got this picture in the mail from Alice 05/15!)

I reconvened with Jess after her meetings finished to go for lunch and do a drive through High Park to see if the cherry blossoms were out yet. The park was busy, but I felt super lucky to see the cherry blossoms—a few days on either side and I may not have been able to!)

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 Jess dropped me off at a subway station, and while I almost got on the train going in the wrong direction (despite her telling me to go the opposite way!), I made another Transit Nirvana-esque transfer at Bloor-Yonge Station to college… and then proceeded to walk past the hotel and almost back to the station I’d transferred at. Hey, I figure I’d done pretty good up till that point—thanks Google Maps!

Shortly after arriving at the Courtyard Marriott downtown, I texted Stacey, a NAPA executive member from BC who had also arrived on Sunday. We connected in the lobby, went to the Second Cup in the hotel, and then went on a walk around downtown, including finding a Loblaw grocery store, and then returning to the Second Cup to buy dinner.

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(We got lost a bit, but that just means more Fitbit steps!)

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The sole purpose of my ice bucket was to house my berries—my chocolate milk couldn’t even stay in there so I just hoped it had enough preservatives in it ;). I was mostly unimpressed that Gerry wasn’t there to get ice for me ;).

Monday.

I woke up at 7:29 Eastern (6:29 Central—clearly I was tired as I went to bed at what my body would have interpreted as 10:06 PM, and I crashed into sleep rapidly according to SleepCycle), and got ready for the day. Did I mention the weird layout of my room? Yeah.)

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I went on a journey for a plain collared shirt in white or black several days before going to Toronto. I found one such shirt and the small was too big, so I had to resort to getting a Winnipeg Jets golf shirt. Represent! I got business casual down ;).

I got a text from Sue saying she had arrived at the hotel after an early flight from New Brunswick, and headed down to the Second Cup to meet her before my meeting with Erika and Vibhas. I am also that person who gave everyone the keys to my hotel room—Dia actually went up there to work, even! At one point, Erika and Dia had both of my keys and I had none, which was kind of amusing. Erika, Vibhas and I discussed the Asthma in Schools subcommittee meeting later that afternoon, and I thought it was awesome that we had some input from Sue as well, as she was taking part in the Strategic Planning discussion, so my hope was that she could use some of our previous struggles to help influence that discussion!

We started our National Asthma Patient Alliance Executive meeting at 11:30. Dia, as Chair, was keeping things rolling as you can see below.

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From this point, I think the best way I can summarize the bulk of the asthma/National Asthma Patient Alliance/advocacy/World Asthma Day related content is through tweets—real talk in “real time”. I’ve embedded a selection [a hefty selection!] below, and then will return with added commentary (I’ve embedded some commentary through Storify, also!)



(Be sure to click through on “Read next page” to see the last few gala posts, and tweets from the Clearing the Air summit!)

I set up #ClearAir15 on Symplur to give us a sense of how things were going Twitter-wise (no, Noah, I did not just set that up to bug you about my insane amount of tweeting, although that was a nice side-bonus—ADHD lends itself well to live-tweeting mostly), and because I like graphs and things (so does Rob, I learned). I am not really sure whether I expected more or fewer people tweeting (I am, after all, MedX biased, which is the craziest tweeting conference evah).

#clearair analytics2

Seems about right.

#clearair analytics1

Sorry, Noah (tweeting as @AsthmaSociety). Final stats say Erika and I out-tweeted you :]. Putting the e in ePatients.
(Of course, the ASC account came out ahead in Top 10 by Impressions. Also, I am glad to see more people tweeting at both Glen Murray and the Asthma Society than me, because that only makes sense.)

My favourite session of the day was Dr. Sarah Henderson’s breakout session on extreme summers and respiratory health. What I found most interesting about this, outside of the graph included above that compared Ventolin dispensed to levels of specific particulate matter in the air (mind-blowing to see that they were able to very much trend peaks in Ventolin dispenses at British Columbia pharmacies [and thus, likely, use of rescue medicine] at the same time as particulate matter from forest fire smoke), and how extreme heat + allergens + forest fires [particulate matter] = higher incidence of respiratory issues—I will say the most interesting part to me was not all of the above, but that Dr. Henderson actually dragged illicit drug use into the frame, noting that not only is use of street drugs a potential cause of death, but the way cocaine use alters the body’s response to heat means that cocaine users are even more likely to die during extreme heat than they might be in the same circumstances but in cooler weather. (Oh, I also got to introduce Sarah AND MENTION PENGUINS. Dr. Henderson is a cool lady.)

My Twitter slowdown came when money and politics were being discussed. I was not only lost, but disappointed when instead of using the policy discussion for good, it came to a political showdown that did not just highlight the good, it began slamming the Tories—yes, I’m really left-wing myself, but a health conference is certainly not the place to alienate those who may not be.

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And that is when Jess and I chose to take selfies instead of repeatedly slamming our heads into the table whilst trying not to breathe in too deeply around the woman who decided it was a good idea to drown herself in perfume before attending an asthma event? (Okay, maybe I was irritated by more than one force…). Anyways, moving back to the positives.

The final session of the day was a patient panel, including two NAPA executive members, Erika and Chantale. This discussion generated a lot of good questions, and I really just wished that the patient perspective was not included last. I think it was a good way to finish the conference, however, I think the patient perspective needed to be woven in throughout the day, not just at the end (by which point many attendees had left, as well). Once again, maybe a “MedicineX sets a precedent for me” thing, but, if we ever hope to see a world where patients are truly engaged in a conversation, and not just—whether legitimately or unintentionally seen as—an afterthought, this needs to happen: we may all be an n=1, but we are why change needs to happen.

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Jess and I following the conference—photo credit to Rob.

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Rob and I (Rob actually recruited me to the exec when he was working for the ASC.
We tried to recreate a picture from Quebec in 2012, when we were both the students taking all the pens from the conference room right before he started law school. And now I’ve also graduated and he is an almost-lawyer!)
Photo credit to Jess.

But, until then, until the change does happen and through that process, I’ll have many amazing friends to share the journey with. Before she pointed me in the direction of a train (look, I only stayed on going the wrong way for one stop!) Jess and I discussed the day over margherita pizzas (thanks, Jess!).

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$3.50 iced tea from Pearson and airplane shirt? Check. (After wandering out of the secure area to not-find Sue because I was not allowed in concourse D? Yeah, check.)

…and, of course, looking back with there realization that if we did not recognize that we are the ones who will help guide change being created, if we didn’t have this stupid disease, we wouldn’t have been sitting at the same table in Toronto for a second time in three days digging through all the topics that we did :). The conversation, the people, and the steps towards change—however small—are what matter.

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Disclosure: The Asthma Society of Canada, via its funding partners (pharma), covered the cost of airfare, one night of hotel, gala and conference admission, and some meals, for National Asthma Patient Alliance Executive Committee members to attend the NAPA meetings and Clearing the Air conference in Toronto. I was not asked to write this post, nor obligated to provide a positive review (as you can tell, probably). 

All tweets cited above as my own are completely that, including mentions of my engagement with both NAPA as present Vice Chair, and the Canadian Severe Asthma Network, as Patient Lead, are based on my own desires to identify [within] these roles/groups. I receive no added benefit in doing so, I just think they’re good people[/things].

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.

This morning, I was helping (or not helping, as the case may be) with the set-up of a new website. Two provinces away on the phone was the doctor I was “assisting” to navigate a new WordPress install.

[Note: She ended up calling tech support, so I can’t say I was all that helpful ;).]

During this call, though, she said “Thank you for being so patient!”

While this was in reference to the understandable frustrations of technology and distance (1400 kilometres is a bit of a distance to lend support on a host I’d never used!), perhaps it should be used in different patient-doctor scenarios.

How many times has your doctor (as a patient)/have you (as a physician) entered the room a) late, b) visibly stressed, c) without having consulted your notes first, or d) all of the above?

In any of these situations, I’d much rather hear “Thank you for being so patient,” over “Sorry”. Being thanked values my time, energy and investment into being a patient. Apologies mean little when they’re overused: apologize when you, as a healthcare provider, have screwed up; when something has happened and you could have done better, acknowledge it! Help reinstate the value of being truly sorry—we can tell when you’re being sincere, anyways.  Chronic patients realize that these things—being late, stressed, needing a second to check our charts—are facts of life in the healthcare system. It’s why I am reasonably patient (and pleasant) as much as I can be when dealing with my medical team, and make the effort to thank every single person I encounter in the hospital or clinic whenever possible: I appreciate the work you do, that these professions do not have nearly enough resources, and that everyone taking care of me has far more than me to think about. I want the people caring for me to know that.

And just as I, as a patient, appreciate the work that healthcare professionals do, I’d much rather the apologies be saved for when they’re truly needed, and instead, my experience be recognized and appreciated.

Thank you for being so patient,” works for me.

when i said good morning, i was lying
i was truly thinking of how i might quit waking up
He pointed out how selfish it would be to kill myself
so i keep waking up.

[…] You grip my wrists,
i let go. 

—much like falling, flyleaf 

This past week, a few things have happened. 

1) Today is Bell Let’s Talk Day  to bring stories of mental health to the forefront and decrease stigma around mental health issues until we end them. This post is being triggered by #BellLetsTalk, but it’s a story I would have told this week anyways.
2) I hung out with Richard, a conversation which brought forth a lot of reflections on my own faith story.
3) I read The Reason: How I Discovered a Life Worth Living by Lacey Sturm. It made me think, a lot, and reflect on a lot of my own testimony and beliefs.
4) The previous two points, and other conversations throughout the week, prompted me to start taking a look at the Bible again—something I have not done in over a year.

What do these things have in common? Everything.

The summer of ’05 was probably the worst time of my life. For a host of reasons, I was constantly in a state of emotional shakiness—and then, depression and numbness. I was fourteen. I spent a week at a Bible camp after declaring myself an atheist a few months earlier. I resented slowing down each day during cabin time/bible exploration. I sang during worship each night—sometimes—but mostly just enjoyed the music while blocking the words out. I didn’t need God, because God did not exist to me. I struggled the rest of the summer—I contemplated ending my life, but I wasn’t yet at the dangerous step of contemplating how.

A month later, I couldn’t run anymore. I still didn’t even really believe in God, yet I threw myself at Him saying “If You’re real, please show me what to do.”

Around 10:30 PM on September 7th, 2005, I changed. I changed in the fact that I no longer wanted to stop being here.

seven years.

Still doubting—He made me believe.

Yet He loves me despite it all.  He loves me enough that He opened my heart that September day in 2005 by telling me that I didn’t have to end my story then and there.  That He alone could get me through everything I was facing–lighten my darkness, take the depression, and heal my grandma of the cancer that invaded her for a few more years.

I’m living a life that six years ago I’d have never dreamed.  I’ve had amazing ups, and I’ve had huge downs.  I’ve learned, I’ve grown, I’ve danced, I’ve cried.  I’ve reached my arms to the sky in worship and fallen to my knees in desperation.

I’ve created new chapters of the same story that God is writing.

I am ALIVE.

six years.

Did I have clinical depression? At that point, I don’t think so.

Would I have gotten to that point? I don’t doubt it.

Mental health issues need to be treated in partnership with someone who is adequately trained to address them. Medication is not the only solution: but not talking about what you are facing is never a solution. I dodged a bullet: just because I began to believe Jesus, believe in His healing, though, does not at all mean that I should have continued without a support system around me.

Even though I didn’t know it then, I have ADHD: 20 to 30% of people with ADHD will experience depression or anxiety alongside their attention problems. After starting ADHD medication, my psychiatrist noted that I seemed to be less anxious—I didn’t think I was anxious (I’ve experienced that alongside a very mild case of disordered eating when I was sixteen, and this was not at all like that), but she continued on to note that it was likely the ADHD symptoms creating the now less-present anxiety. I do not at all doubt, or disagree with, this.

For me, these things all go hand in hand. My life, my faith, my mental health—my story. The person I am today is different because of all of the above—yet, I would not want to be the person who I’d be without facing my past.

 

Rock version or acoustic, the words in the two versions of Red Sam below are pretty much the same—the message definitely is. My story is a lot like Lacey Sturm’s. I have a post coming up on worship (soon!) and these both exemplify so, so strongly the way I respond during worship

I’m still alive. The world needs YOU to continue your story, too.

Stay. Be here. There is HOPE in finding help. (usa)

here i stand
empty hands
wishing my wrists were bleeding
to stop the pain from the beatings
there You stood holding me
waiting for me to notice You

but who are You?

You are the Truth
outscreaming these lies.
You are the Truth
saving my life.

the warmth of Your embrace
warms my frostbitten spirit
You speak the Truth and i hear it
the words are
“i love You,
and i have to believe in You.”

my hands are open, 
and You are filling them
hands in the air
in the air, in the air, in the air.
and i worship
and i worship
and i worship
(Jesus)

red sam, flyleaf.

So this, this is all too true. And with that, I present, Goals from 2011 – Revisited.

Small things

  • Focus on the good things.
  • Complete the onehundredpushups program and not derail. Yes, I am doing girly push-ups. It is better than no push-ups.  If all goes well, this will be completed by the end of January.
  • Stop making Saturday and Sunday the exception: 
    • the weekend is not an excuse to only brush my teeth once a day instead of twice
    • it is not an excuse to forgo a workout or two
    • and it is not a cop out for eating all kinds of random food.
  • Become more reliable at hitting up the cardio workouts 45 minutes/day, 5 days/week.
  • Read over the day’s notes when I get home from school and make study notes as the term goes on, because it will make finals suck less.

Bigger things

  • Health advocacy: do new things, reach beyond what I’ve already been doing in some way.  [Maybe that’s doing more races sporting the Team Asthma gear, maybe that’s trying to see if volunteering at asthma camp will work this year, maybe that’s giving my time and my own body for research if I’m eligible.  It could be a lot of things, or all of these things].
  • Actually walk a half marathon.  I’ve been saying I’m going to do one for about two years, so let’s make 2012 the year pending all goes as planned.
  • Work with others to help them realize their own potential, be a part of that ripple effect.
  • Figure out where I’m at with God.
  • Make another attempt at the 365 project.
  • Hesitate less, do more.

So. How have I done?

Focus on the Good Things: It’s a conscious choice, but I try to nail it every. Single. Day. And I think I’m succeeding for the most part.

Onehundredpushups: Nope. I can safely say that I have not, nor am I trying presently, to be able to do 100 pushups… of any sort.

Stop making Saturday and Sunday the Exception: Here’s the issue: every day is Saturday and Sunday to me right now. Which means that I try often and fail at brushing my teeth twice daily—I always get bedtime in, morning is a bit tougher to remember and I don’t know why—I can tell you that I haven’t done any working out since several weeks ago when I impulsively bought a yoga app and did a yoga workout I really enjoyed and then… didn’t touch it again—and, I eat random food all the time. Right now I have Combos beside me. If you want to talk about random food, that is the epitome of it right there.

Become more reliable about hitting up the cardio workouts: 2013 derailed this because I was sick for so much of it. But you know what? it’s effing over. 2013 is effing over and it has been for a long time, and yes that got me off track but it is no reason to still be off track.

Studying: Currently irrelevant, but I can say I never really made good on this, except for in Anatomy round 3.

Health advocacy: In the big picture, I have done this—when I wrote this, I had maybe haphazardly filled out an app to medicine-x at Stanford… But then I got in for 2012. I had yet to learn of attending the World Congress of Asthma with the Asthma Society in Quebec City in 2012. And, I had yet to know that I’d start taking on more roles with the ASC, link up with the Canadian Severe Asthma Network, attend MedX again, and, most importantly, find more ways to practice everyday advocacy within the places I was all the time: school and work. So I’m going to give this a check mark—but it’s a constant growth, and I still have more work to do. See also: Badassmatics!

Actually walk a half-marathon: I don’t even know if this is on the goals anymore to be perfectly honest. But maybe see that thing about cardio above.

Work with others to help them realize their own potential, be part of that ripple effect. I’m gonna give this one a check-mark, but once again, that isn’t something that ends.

Figure out where I’m at with God. My journal would indicate that is still a big question mark, but it’s actually something I’ve been contemplating in the last week. And, I feel like I might never figure that out and that’s just part of my story.

Make another attempt at the 365 project. CHECK MARK. More to come on this!

Hesitate less, do more. Sometimes I meet random strangers off the internet in airports in a country I don’t live in, and they drive you down me state awhile and drop me off to crash in a hotel with someone I also don’t know. And then I repeat that process in a few different ways in a few different states. And, sometimes those people end up becoming your best friends. That’s a pretty extreme example, and I’m sure there was a lot of reservation, but… adventure is really not born of extreme caution, it’s born of optimism and trusting your instincts. And, it’s worked for me.

There are certainly things to build off of here, but the important thing is, I have been building. But, I need to act more, and more fully. And I know this—I just have to harness the energy to make it all happen, because I can. In the coming weeks, I’ll revamp the goals list for 2015—and be doing some introspection surrounding previous goals lists, too.

Even though I am to not be bound by calendar years, yes, that fresh start effect everyone gets so into is contagious.