Until you have been in my brain you cannot tell me ADHD is not real.
Science says ADHD is real.
Why I have to on occasion argue this fact with people, is still very confusing to me. Although I guess it is the same reason people choose not to vaccinate their children and re-start outbreaks of diseases previously eradicated from the developed world—they choose to remain ignorant.
As I once said to Jess in Calgary, “Stupid people are not your problem”.
Sometimes stupid people make themselves our problems, though, which is unfortunate.
Other times, though, smart people affirm what you’re putting out there. (Thank God for smart people!)
Yesterday morning, I shared a video on Facebook about “pill shaming” people with mental health issues. You can see the video here.
And yes, ADHD very much falls into this category. After all, everyone is just popping Ritalin (or now, Adderall more accurately) as a study drug and nobody actually has ADHD, right? Wrong.Obviously.
I have a have a friend who recently started ADHD medication again, after we had a conversation about ADHD on a dark drive home from a friend’s party in the country (I have a half written post about this somewhere that I really need to get out into the world). He, like me, has found the of meds after not treating his ADHD for over a decade positively life altering.
Yet, when he posted this on Facebook, that he was starting meds, the doubters, the disbelievers came. And—thankfully—many of us fought them back with science. I’m not sure disbelievers enjoy PubMed links being thrown at them, but damn it, I went there. Because that is how we fight ignorance and misinformation.
With freaking science.
Yesterday, when I posted the link from Mental Health on The Mighty, I did so with the following text:
I’ve had so many people ask me why I need ADHD medication.
Because there is an imbalance in my neurotransmitters, that’s why. No I can’t just “try harder”. I tried life on hard mode without a diagnosis for 21 years.
Maybe it doesn’t keep me alive like other meds do, but it does make my life so much better.
Six minutes later, my friend from above commented this:
I like how this publicly happened on my Facebook lol
And we SHUT DOWN those haters. 😉
Alongside this, as of the time I am writing this, 20 of my friends chose to “like” or “love” this post. Another friend commented “Yes! Well said.”
There is power in finding people who get it. People who understand.
Because we all spend enough time fighting misinformation. Fighting people who shame you for not trying hard enough, even if you’ve tried harder than just about everybody for decades to get by without medication—often without so much as a diagnosis to understand why your brain is differently wired.
It’s much better when we fight ignorance and misinformation together.
The only way we can stop stigma is to share our stories, and being fiercely proud of our stories—they make us who we are. ADHD is a piece of me that makes me who I am. I’m proud of that piece, proud of my quirky, neuroatypical brain. Of seeing life differently. I chose meds to be part of my journey, to help me harness the joys of my ADHD brain better. Vyvanse (or previously Concerta) doesn’t cure me. It doesn’t make me neurotypical. It just makes me better able to balance the joyful parts of my ADHD with the frustrating parts (and I still get endlessly frustrated with myself. But it’s so much better).
Sometimes medicine is a part of “trying harder”.
And I’m thankful that many of my friends seem to get that.
Today is the last day of school, so Steve and I thought it would be a good day to check out the dinosaur exhibit at the zoo, without a lot of kids running around (just the under 5 types that happened to be there). So, off we went to the zoo with Guide Dog Murray to visit the dinosaurs, because we thought Murray would probably enjoy that (okay not really, but we wanted to go and it’s always cute taking pictures of adorable puppies with things).
As we walked down the path to the dinosaur exhibit, there were some peacocks ahead, which was cool until the peacocks caught sight of us and our black, four legged friend named Murray.
And they started running. Towards us. AT US.
I’m not sure if I swore in front of all the children, and I’m sure Steve doesn’t remember either because we ran.
I didn’t actually realize until I looked back after we’d started booking it back to the entrance that there were not one, but two peacocks chasing us and squawking at us. Somewhere in there I finally thought to scream which freaked them out a bit and they stopped charging towards us. We kept running until they were out of sight.
Of course, Murray got all excited that we were running and he was just bouncing around as we ran. Silly dog, had zero clue that peacocks wanted to eat him. Which is probably for the better. Look, despite how adorable tall Steve finds my short legs running, I only ever run for legitimate reasons—also I learned how to run in university. #kinwin.
After about 200 metres of running (I don’t know how far it was, I think that was Steve’s guess), I could no longer see the terrifying peacocks. We stopped and slightly more calmly made it back inside the entrance area where we paid, and walked up to the ticket lady that had processed our admission and informed all the zoo staff that a service dog was coming in by radio.
“Hi, so we just got chased by a peacock out there…” I told her “Can we get a refund and we’ll come back one day without the dog?” “…Oh wow. Uh yeah let me just go talk to my boss.” “I know, things you never thought you’d hear when you came into work today, right?”
We got our refund after our five minute zoo trip and went to the gift shop.
Murray still got to see some dinosaurs, but they were tinier than anticipated.
And there’s the story of the shortest zoo trip in history, probably.
And the story of that time I got chased by a peacock with a dude who never saw it coming and a puppy who probably thought we were playing. 😉
I’m not a resolutionist for the simple reason is that I don’t think resolutions help to build habits. People get off to a great start or a bad start and often that sets the tone for the year—at some point, I read on Forbes.com that only 8% of people accomplish their new years resolutions. And I’d probably definitely be in the 92% that doesn’t. (Look, I’m not being a defeatist here, just honest.)
Simplicity is the intention here. Akin to the final notes of 2015’s soundtrack, here’s what I’m aiming to accomplish in 2016—even if that takes me the next 362 days to sort-of get right.
1) Write with my hands more. I picked up a couple unlined Moleskines on sale at Home Outfitters on Boxing Day. Since January 1, I’ve been trying to write daily, even if just a few lines (or, not lines. I’m hoping to be freed by the totally blank pages.
Not that I consistently write on lines or anything. Overrated.
2)Read 40 books. It’s a little more realistic than 75.In progress—new for 2016—Freak the Mighty by Rodman Philbrick and an advance review copy of a book called Millersville by Brendan Detzner.
4) Create. Even if that’s just colouring, or writing more (even typing). In some fashion, I want to aim to write (non-work-things) for 20 minutes a day—at least.Goes back to the “just start” thing.
5) Engage more on Twitter. Sometimes it seems like it’s counter productive to have a goal to engage more with people on social media, but you know what? I think I engaged a lot less that year, and realized repeatedly how much I missed it. So, the Twitter part of my heart is getting some focus. 🙂
Keeping it simple—God knows I’ll complicate stuff in other ways. Let’s go.
Two weeks ago, I went to Denver.
(By the time I’m getting this published, it’s been two weeks.) The time was packed, let me tell you. (I told my friend Sam everything I did when I was there and she was like “How long were you gone for?” and I was like “Left Monday morning, came back Tuesday night.” and she was like “…I thought you were gone for like, a few days with everything you did.” Nah, just didn’t sleep. Actually I did. A bit. More on that below.)
People tried to explain to me that I was not actually in the USA and Canada at the same time. I fail to understand how this works, because while the airport may think I am in the USA after I pass this door, I could jump back out the window and be in Canada. Because, there’s snow out there.
Then I got on a plane
On another point, my CLEARLY OVERSIZED BAG fit in the carry on sizer. Easily.
Then I got on a plane.
and they sprayed my plane with green goo to de-ice. (Yes. Because we have to de-ice in May up in these parts. Thanks, Colorado.)
This dude is sleeping with his stuff in a very precarious position. The flight attendant seemed confused.
And then I landed in this field that looked like a farm, and it turned out I was in Denver, so I met Dia by the giant statue of a potted plant (I expected it to be more giant, actually. It wasn’t worth photographing, I guess.) Dia is my Canadian asthma advocacy partner-in-crime, and the current Chair of the National Asthma Patient Alliance Executive. (And also she and I have seen each other every second Monday for the past six weeks and next Monday is going to break our streak.)
Dia and I took a cab downtown to the Hyatt Regency at Colorado Convention Centre where the American Thoracic Society conference was taking place (note: we didn’t get to go in, except once Dia tried to wander past the passes-only area. She was unsuccessful.)
Dia and I met Dr. Dilini Vethanayagam, a respirologist from University of Alberta, Edmonton, who has special interest in severe asthma (and working with the Canadian Severe Asthma Network [CSAN]) almost as soon as we made it downtown. This is the thirty fourth floor lounge at the Hyatt, where Dilini took us to hang out—it’s always fantastic to finally meet someone in person after—at this point—a half dozen phone calls (or more?) and a few years worth of e-mails. Dia and I learned more about the state of the research study I’m working on with U of A, and where CSAN is at.
After meeting with Dilini, Dia and I headed over to the ATS Conference, or as far into it as we could get, anyways. Dia was in heaven as she picked up 20 pounds of respiratory journals to take home with her, and we visited the Canadian Lung Association table. You know, after Dia tried to sneak into the badge area…
We also took a selfie at a selfie station to win a prize pack. (I think we didn’t win. I’m also unsure why I look more excited than Dia, because Dia is actually probably way more excited than me at this point because she has an armful of medical journals and she likes smart things…)
Wearing my Badassmatic shirt. Except I lost Dia’s challenge and didn’t get any pictures with asthma doctors with it on…
And then we got popcorn before meeting Dr. Sally Wenzel from University of Pittsburgh, and the Severe Asthma Research Program. (You might remember Sally from a previous asthma adventure to the World Congress of Asthma in Quebec City in 2012. We failed to get a picture with her, but it was great to be able chat with her before a presentation for 15 minutes!)
Now, enter my American asthma advocacy partner-in-crime, Steve (it took his cab an eon to get from the airport to the hotel, but he made it!)
AND, his Boston Marathon racewalking partner-in-crime, Lis, whom I was also meeting for the first time… not that you’d be able to tell…
…The first picture…
Now, I’ve known Lis online for a good five years now, and in person she is every bit as energetic (to put it mildly) and passionate as I would have imagined (look, these words are failing to explain her adequately, so let’s just say she is this wild force of awesome, and you’ll have to meet her yourself!). We also met up with Sheila, another asthmatic in Denver (Lis was the odd one out—though she was initially misdiagnosed with asthma, and is since doing a LOT better since confirming she has vocal cord dysfunction! :].) Lis lead the way to Mellow Mushroom Pizza because Dia and I were kind of starving at this point and Steve liked the name (and so began my first of two pizzas in about 4 hours..!)
After food, Sheila, Steve, Dia and I grabbed the free bus back to the hotel, Dia and I got our stuff from storage at the Hyatt, and we parted ways with Sheila and headed to the hotel via Uber.
So, know what rocks about travelling with people with asthma?
This—if you’re unfamiliar, the missing ingredient would be the nebulizer tubing, AKA the piece that connects the nebulizer to the compressor making it useful…
Yeah, the three of us all travel with the same compressors/tubing… I headed across the hall to Dia’s room instead of upstairs to Steve’s. Really, I did not feel super terrible except elevation probably + fragrant people exposure + hotel under construction = kind of a perfect storm. I did another treatment the next morning, but upon landing back at home I was breathing easy again. Denver = weird. Which I was told to anticipate.
Then we went to dinner at Piatti and met the other two bloggers attending, Juan and Karen from GSK, and Samantha and Minyan from Golin, the PR company working with GSK. I rolled onto my second pizza of the day (margherita, and not just cheese ;)). And then Steve, sneaky friend that he is, made this happen…
This was Monday. My birthday wasn’t until Thursday (oh, hey, I’m 24 now..!), so I was more than a little shocked/confused for a moment! So, Steve dropped the word because he wanted to buy a cake but then basically GSK stole his idea ;).
How freaking beautiful is this cake?!
Then we returned to the hotel, where I had to go get new room keys (because, no, I can’t just forget my room keys when I go to the pool with Goalball Steve [as opposed to California Steve] and Gerry in Toronto, I forget them in Denver, too. Fortunately I had ID this time. Steve, Dia and I went and hung out in my room after I got new keys, and when Steve and I walked in, I found this… (Well, it was in the bag at the time!)
Yes, Ms. Lizzy (Lis) and Doc Boots strike again! Pineapple Fanta and Jarritos! (Complete with bubble wrap so I could get it back home in my then-checked backpack!) Lis knew it was my mission to get my hands on some Pineapple Fanta while in Denver, and… there it was, complete with puppy birthday card! Steve got to work using some surface or another in the bathroom as a bottle opener, and Dia went to get ice (I am the lazy one who only tore the paper cups out of their plastic wrapping and poured the bottle of soda into cups ;).) Dia and Steve got into some scientific discussion about mast cells over Pineapple Fanta while I stared at the curtains (aka not the mountains. The hotel claimed mountain view but they were VERY FAR AWAY) cluelessly.
Eventually we all went to bed (I did my bedtime reading from GSK with a side of GSK Ventolin): I sort of slept. Steve did not sleep. Dia actually slept. I sent Steve my sleep graph in an early morning text message.
Sometime around six I went and hung out in Steve’s room (note: Steve and I are polar opposites in the regard to Hotel Room TV. He always has his TV on. I never do. When I was in California, he was the one who turned my TV on, and I turned it off when he left). Dia decided to test out the 24-hour-Starbucks-theory (as she told us) and headed over to Starbucks nearby, after coming up to Steve’s room to pick up my phone with which she bought me hot chocolate. (…Yes, look, this is how awesome my friends are, and how lazy I am early in the morning. But mostly how awesome Dia is).
Is it tag-team nebbing if you part ways to do treatments? 😉 I Instagrammed this picture with the caption “I get by with a little help from my friends—and their nebulizer tubing.” I usually only do treatments when I am tight enough for it to be really bothering me, but like the night previous, I was kind of not wanting to cough through dinner with GSK, nor did I want to sound more asthmatic than my usual cough during the event. Also, look, the things I do as a patient always come with a stupid side of asthma, and that is annoying, but a reminder that yeah this disease sucks but I get to do cool things because of it sometimes, and more-so because of the fact that I try not to complain about it and just live my life and coexist with my asthma.
Plus I always feel way better after even if I don’t think I reallyyyy need a treatment that much.
Plus also Dia made me laugh while taking this picture as she arrived at my room mid-treatment and probably yelled “housekeeping”. Steve also came [post-treatment] and did not yell housekeeping and just knocked like people sort of usually do. Then we went downstairs into the construction zone to get in the Ubers to go to Columbine Elementary School (for those wondering, no, this is not near Columbine High School), for the GSK Building Bridges for Asthma Care event.
Here’s Steve and I being sleepy in the Uber SUV.
We are good shoulder sleeping heights for each other.
Being mindful that I do not have a proficient understanding of the American public school system or its subprograms, I deferred the interpretation of this to my friend Kat. She explained that “92% of the families [in the area] make less than 185% of the federal poverty line; [about] $40K for a family of four,” and thus qualify for subsidized or free school lunches. (Note that in Canada we have no such national programs.) She continued to say that “In general, [with] that high of a percentage, it would be fair to categorize the neighbourhood as poor-to-working-class [living paycheck] to paycheck.” The schools the Building Bridges Program was run in had been referred to as inner city schools, and Kat’s explanation of the socioeconomic status relevant stat above helped clarify that to me.
I want to quote what Steve wrote before going any further:
So, do the big drug companies have a vested interest in helping these types of programs succeed and seeing the absenteeism rates drop? Would this type of program increase their inhaler sales? I seriously doubt it. Even the big bad drug companies do good things once and in a while and I think this is a perfect example of that.
This.And, like I said in my previous post linked above, I think it’s time we give pharma a lot more credit.
The Building Bridges program aims, in short, to decrease school absenteeism in kids with asthma—and through this, their parents are able to more consistently attend work. If we’re talking families that may already struggle financially, this becomes even more important. We’ll now break to a video. Because this is what they are doing:
This means that this little girl was in school on Tuesday.
Didn’t take much more than saying “I have asthma, too” to get a smile and a high-five from Countess!
This means her mom (Qyanisha, in the video) is able to work regularly. It means she could take time off to attend this event without worrying about her daughter. It means that less children and families are living similar stories—it means the core aspect of a child’s life is able to flip from asthma to school, just like every other kid.
While I said I had wished there was a kid on the panel (and I’m happy I got to meet Countess!), we heard from a bunch of amazing medical providers working with the Building Bridges program. I’ve Storified the event, so you can scroll through. I have to say though, that Donna Sparks, RN, was my favourite speaker of the day—
Another huge connection I hadn’t made previously, that Donna made (can I say again that this woman is awesome? Super Nurse Donna fan club, people): because these kids can be in school, they can stay in school. Donna underscored that if kids can stay in school, they can finish school—they can decrease their risk of becoming involved in crime by finishing school. I hadn’t thought of a link between asthma/absenteeism/deviance before: I just threw “asthma and crime” into Google Scholar: 34,200 results. Whether this is because inner-city areas seem to have higher rates of both asthma and crime, or because of issues pertaining to health care access, or because of algorithms, or actually because kids with asthma may miss more school and become frustrated and then turn to crime for psychosocial/socioeconomic reasons (or other cyclic things like that), is not super clear, of course, but here are some snippets (they are a bit long, so if you are not into academic reading, just read the first one and skip the bullets, okay? Don’t leave me hanging!)
The first concludes: “Evidence suggests an association between violent crime and childhood asthma prevalence in Chicago.” (Gupta et al., 2010)
Another: Results: […] Among African-American patients, age and residential crime rates were positively and negatively assicated with ICS [inhaled corticosteroid] adherence, respectively. Area crime remained a predictor of adherence in African american patients, even after adjusting for multiple measures of SES [socioeconomic status].
Conclusions: This study suggests that an environmental stressor, area crime, provides additional predictive insight into ICS-adherent behaviour beyond typical SES factors. (Williams et al., 2007). (Note: Remember that ICS use is positively correlated with asthma control, and that non-adherence can negatively affect asthma outcomes. Also that these drugs are quite expensive, especially in places like the US).
And, yet another (also nothing the use of “may” doesn’t mean that this is untrue, it just means that, as an instructor once told me, that especially in health, research never really ‘proves’ anything, only suggests potentials—as per point #1 up there, and the most recent of the articles cited):
Increasingly, studies have begun to explore the effect of living in a violent environment, with a chronic pervasive atmosphere of fear and the perceived or real threat of violence, on health outcomes in population-based studies. Violence exposure may contribute to environmental demands that tax both the individual and the communities in which they live to impact the inner-city asthma burden. At the individual level, intervention strategies aimed to reduce violence exposure, to reduce stress, or to counsel victims or witnesses to violence may be complementary to more traditional asthma treatment in these populations. Change in policies that address the social, economic, and political factors that contribute to crime and violence in urban America may have broader impact. (Wright and Steinbach, 2001).
So, yes: this understanding/hypothesizing has gone back to at least 2001—and probably way before. Many programs in the US are working to this phenomenon, and I am happy that Building Bridges is among them—and, I hope it is able to expand to other schools. Because if one thing—asthma control, both in the sense of actual control of the disease and reclaiming the feelings of these kids that they can do anything… can lead to a ripple effect of good things.
The coolest thing about this event, I think, was that it was ensured that we got there early enough to meet the speakers, and that they so wanted to speak to the bloggers attending. That doesn’t happen at every event. The event organizers also had a fantastically sized gap between the end of the presentations and lunch that people started to mingle, and then carried on their discussions over lunch—an amazing transition, even if it was not planned! As soon as the event ended, I also got flagged down to meet Qyanisha and have a direct conversation with her about how the program has impacted her and her daughter—prior to connecting with five or so others just on my way up to my bag at the back of the room, I returned to this scene:
Dia doing what she does best, asking great questions to Sheila—an asthma counsellor with Colorado Children’s Hospital—regarding parental buy-in to the Building Bridges program and how they deal with resistance to engagement and alternative therapy use—which is by educating without being forceful.
We flowed through chatting with a bunch of people in attendance, and then into the line for lunch and up to the tables on stage—I won’t lie, another huge highlight was spending lunch with the school nurses and asking their questions about blogging, while passing my phone over to show them my blog! How cool is that? I had to heckle Steve to make his way to the blogger debrief table because people were so interested in his awesomeness that they wouldn’t really let him escape ;).
Andrea (left-back), Katrina (right-back) Dia, myself (duh :]), Stephen
Below, same, with Karen and Juan from GSK.
Photo credit to GSK/Erin Guthrie on Photobucket.
The blogger roundtable was a great way to wrap up the morning with Juan and Karen. We basically had an open Q&A with them about what they can do better for patients (drug ads. make better drug ads, guys!), and other ways they can make the patient connection better. Can we go back to my post from prior to the event for a second? They. Are. Trying. Effort takes time. I realize that working in communications, Juan and Karen are just doing their jobs, but, people don’t get jobs that require high amounts of talking to other people if they don’t want to change things—that’s just kind of the way extroverts are. I’m really looking forward to seeing what comes next for the asthma community through pharma working towards bridging the gaps […no Building Bridges pun intended!] with patients and—I hope—implementing our suggestions, showing us progress, and not just letting the roundtable be a one-day, in-person thing.
Because whether we’re selfie-ing in an Uber…
(Karen, Juan, myself, and Dia’s eye.)
Or trying to get our own Uber for the first time…
…Or laughing at this sign for whatever reason…
…Navigating this security line with our plethora of medications and neb compressors…
We have a lot of things that, together, we want to make better
(or at least suck less?)
“Not a doubt in my mind anymore, there’s a storm up ahead.
Hello hurricane [tornado?], you’re not enough. Hello hurricane, you can’t silence my love
I’ve got doors and windows boarded up, all your dead end fury’s not enough
you can’t silence my love. […]
I’m a fighter, fighting for control—I’m a fighter, fighting my soul,
Every thing inside of me surrenders: you can’t silence my love.”
—Hello Hurricane, Switchfoot.
(Asthma is kind of the storm—the kickass friends who dare to do something about it are the shelter.)
Yet, we prove every damn time we’re together, that we’re about far more than asthma
(Before, one by one, we departed—Steve, then Dia, then myself—
Denver International Airport)
but most importantly: together or apart;
advocating purposefully or just living our lives that happen to include asthma…
We are still here. We sill want to share.
Disclosure: GlaxoSmithKline United States paid for/is reimbursing all costs associated with attending the GSK Asthma Summit, including roundtrip airfare to/from Denver, CO, hotel, ground transportation and meals [and phone expenses?! And for my checked bag after I got gifted Pineapple Fanta?!]. I was not required to blog or share on social media about the GSK Asthma Summit, nor do they pay me to do so (nor do they affect the content I produce in this post, or in the future—or the past, I guess.)
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.
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.
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!)
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.
(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!)
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.
(We got lost a bit, but that just means more Fitbit steps!)
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 ;).
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.)
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.
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).
Seems about right.
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.
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.
Jess and I following the conference—photo credit to Rob.
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!).
$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.
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].