It’s #BellLetsTalk Day, which here in Canada is the one day of the year that people—for better or worse, and sometimes to just bash Bell—stop to talk about mental health. I’m not getting into the Bell thing—it’s a thing.

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What I am getting into is this country has taken the time to pause and reflect. This is awesome. I have seen so many of my friends on Facebook share their struggles and triumphs and stories of living with anxiety and depression; of going to therapy and of choosing to try medication. People who have dealt with these things since childhood, or who are navigating mental health concerns for the first time as adults. To all of you who have shared your stories—today or any other day—I am so proud of all of you. Thank you for being bold, embracing who YOU are, and sharing your journey: I hope that it makes people in your world see “mental illness” differently, and see you just the same, because you are. You are important and your story is important. Every damn day, not just today—the highs, the lows, your story is important. Every. Freaking. Day. 

I am right here with you.

ADHD is a neurodevelopmental disorder, but one that is also considered by some—including the Canadian Mental Health Association—a mental illness. Like depression and anxiety, ADHD is caused by an imbalance of chemicals in the brain, specifically neurotransmitters.

And I’ll be honest, there are days that I can’t believe that. There are days that I see attention deficit disorder as a blessing or a gift or whatever cheesy, cliche thing people say and how could that be a mental illness? How could it be something that isn’t awesome? Days that I am on my A-game, that I have witty remarks that come out the right way, and that words just fly out onto the page in front of me, and days that my energy is exploding out of me in a way that actually feels good.

Except, more often, there’s the flip side to ADHD. The self-doubt, the feeling that I can’t do things right because I have failed to meet expectations so many times, the times I cannot focus enough to figure out the simplest of things—or even when I can focus, there is information my brain simply can’t process. There are the times that not only can I not understand why I am reacting to things the way I am, but also that it is a tidal wave: my feelings just crash over me and I can’t figure out how to just stop this and react how I know is “normal”. It helps—a bit—knowing that this is common for kids and adults with ADHD alike, that we legitimately feel things more intensely and for longer than other people do [1]. But it only helps after the fact. There are the times I hyperfocus and fail to get anything done that I actually need done and only let myself down; others that I again feel like I’ve failed someone else. The words “I forgot,” or “I’m sorry,” are not less true when they come out of my mouth: I mean it. But I get it: it’s hard to accept, again, when you’ve heard it before, because it looks like carelessness. I don’t blame my ADHD—I blame myself, because ADHD and I coexist. I am not my diagnosis, but I cannot separate from it, either. ADHD isn’t just about academics: it’s about life. And it sucks when your failures or shortcomings are not for lack of trying, they are just because my brain is not wired that way.

But here’s the thing. It’s so much better than it was. It’s better knowing that there is a reason why some things are like they are. ADHD is not an excuse, but it is an explanation, if even just for myself sometimes. It’s better knowing how to figure out strategies that work rather than just feeling like I’m stupid. It’s better knowing that this is how I am wired, and that is okay

My first appointment with my psychiatrist back in 2013, she did not say it but she clearly made a note that I appeared anxious. I started medication for ADHD the next day. When I met her again a month later, early in the appointment she commented that I seemed less anxious even just on a very low dose of Concerta, and asked if I had felt anxious before. I told her that I hadn’t, but that things just “felt better” inside me. It was hard to describe—she understood. Every appointment I have seen my psychiatrist she actually asks about side effects. She asks how things are going. She asks how my mood is. Every time. Because she knows the statistics.

Research states people with ADHD are at increased risk for mental health issues: nearly half of people will experience an anxiety disorder, well over a third will deal with a mood disorder like depression, and 15% will develop a substance-use disorder. [2] However, if ADHD is managed correctly, be it through whichever combination of exercise and therapy and medication and eating well-ish, these things can either be caught early and treated early—maybe even be prevented. Maybe.
I am fortunate, I do not currently have any co-existing mental health concerns. That doesn’t mean that it hasn’t, won’t or can’t happen.

ADHD medication doesn’t give a person with ADHD any special ability to concentrate. I probably still focus less well than most non-ADHDers on 72 mg of Concerta a day. I don’t know because I’ve never had a non-ADHD brain. But do I feel better? Yes. Even though all of the above that I still struggle with. Part of it is because of medicine, but part of it is simply knowing what I am working with, knowing that other people experience this, knowing other people get me.

So, Canada.
You spoke.
I spoke.
We “talked”.
Now, don’t shut up just because Bell does.

Because we need this conversation. And we need the conversation to go further: to ensure mental health care is easily accessible—and affordable—for all Canadians. To make therapy with high-quality therapists affordable and accessible*. To ensure that services are available on demand, when people need them—weeks, or months, or years later. As a Canadian, healthcare for your body comes with the package—its a right. But care for your brain? It’s still on the table. (Which is closer than it’s been for a long time.) Stories are important, but so is access to care.

We need this conversation because we need every Canadian to feel confident they can be supported when they choose to share what they are facing.

Because my diagnosis is NOT about whether or not you believe it exists or not. It exists.

And we are living, breathing, singing, dancing proof that WE EXIST.

*Affordable and accessible therapy, to me, means to make therapy that is not income dependent or not something that is dependent on (awesome) charitable organizations like Aulneau, or educational institutions like the University of Manitoba Psych Services Centre. I’m uninsured, and if I can’t afford insurance, I can’t afford a $150 an hour therapist: which doesn’t mean that I should (or in some cases can) just wait longer.

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I coach two teams, I am semi-active(-ish)—per Fitbit, I’ve averaged 178 total active minutes a week for the last 4 weeks (and this is a period of time I feel rather inactive, but it still puts me over the 150 recommended minutes a week… although that is really moderate activity and mine is, um, mostly not?). But sometimes keeping it interesting is hard, and sometimes I just want to stick with the typical things because they are familiar, and familiar is easy (except then I don’t do the things).

Late last year, ParticipACTION (Canada’s leading physical activity promotion non-profit) took a vote of which physical activities were the country’s favourites—selected activities (and those voted on) range from the predictable (duh, hockey) to the “WHAT IS THAT?” (snow snake, stick pull) to the “BUT HOW?” (white water rafting, axe throwing, highland games).
These final picks are known as the 150 Play List. So now, I am setting off on doing them all. Sadly I have many from last year that I could have checked off that I have little clue how I will get in again this year (sailing?!).

Finishing week two of the year, I’ve checked three activities off the list so far (note: ParticipACTION apparently counts each time you do an activity as 1, so the site says I’ve done 7. Okay?):

1) Goalball. Well it probably is not any surprise that my favourite activity on the list got completed really early. I play goalball with the guys I coach almost every week, and last week (our first week back after the holidays) threw some pretty hard shots at me. I was surprisingly unbruised (except one tiny bruise on my hip, which I thought would be larger.)

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Doug came to goalball for our first practice back. We spend a lot of time laying around on the floor in this sport, I will be honest. Unfortuantely due to my shortness this is not actually a great defensive strategy for me most of the time.

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2) Walking. That was easy. Well, actually not terribly so, considering the dump of snow on December 26th and the lack of sidewalk clearing crews out (until Steve got on the news about it, anyways.)

3) Soccer. We only had a couple of athletes at Special Olympics practice this week, which meant that the athletes got to choose what we did. After playing floor hockey for awhile, we played soccer. My passes are as inaccurate as ever, FYI.

For the next 5 weeks at Special O, we are trying to get as many of these activities in as we can with our athletes. I already have goalball checked off, but I hope to be adding another 24 activities as we explore them with our athletes!

Now, we’re supposed to be getting some warm weather (after our wicked cold snap) so I hope it doesn’t kill off all the skating rinks or that’s going to pose a bit of a problem in regard to checking of “skating” and “hockey”…

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I’ve had so many adventures this year which didn’t all get captured on the blog. I’ll try to do that better next year, I guess. While I’m trying to watch 17 movies (it is a stretch, okay?) and whatnot. Now that I’ve finished reading 40 books this year (goal = crushed two days early!), here’s a bit of a recap of shenanigans and adventures of 2016.

January.
Dean and I finally wen to the Royal Canadian Mint. It’s odd that you can live a place that makes the country’s money your whole life and have it take until your mid-twenties to actually go visit the Mint. I was getting over a bug on New Years Eve so I stayed home, and thus my friends and I had Fake New Years Eve the next week.  At the end of the month, we headed to Montreal for the Montreal Invitational Goalball Tournament. It was a great learning experience—the “Goalball family” is truly a thing, and we were fortunate to have some excellent teams and players who stayed on court after the game and gave us some pointers! 
Oh right, I also sliced my middle finger open with scissors while trying to cut a cardboard box three days before going to Montreal, so I had to go to the ER for stitches. Unlike my other ER visits of the past, three stitches are a Normal People Reason to go to the ER. Then I traveled with stitches in my finger for 6 days, it was great. (Not. Although it was funny because my signature always looked worse than normal on score sheets and I determined I could not decline any penalties because it would look like i was giving the official the finger…)

February.
From Montreal, Steve, Guide Dog Murray I jumped on a train to Ottawa, opting to postpone our return flight a few days and instead fly home from Ottawa—why not? It was actually cheaper! We booked into the Residence & Conference Centre at St. Paul’s University and had a two-bedroom apartment for the couple of nights we spent in Ottawa. My friend Sara picked us up from the train and showed us MLTDWN, a grilled cheese place in Rideau Centre we ate at at least two more times while we were there. We toured Parliament (Murray was sad that he didn’t see Justin Trudeau), ate far too many Beaver Tails (for non-Canadians, those are pastry with delicious things on them), and tried to go to the Supreme Court but a guy opened the door and told us that Court was closed for a party. Apparently, and sadly, we were not allowed to join the party at the Supreme Court. On our last morning there, we went for yet another Beaver Tail after all of Ottawa had become a skating rink due to ice storms or some such, and then we visited my friend Jason before Ubering to the hotel and then to the airport.

Somehow Steve and I then ended up in Toronto at the end of February for the Canadian Blind Sports Goalball Coaching Clinic (thanks, Manitoba Blind Sports and Coaching Manitoba!). We were among the first group of trained goalball competition coaches in the country, which is pretty cool. Of course, upon arriving in Toronto, we headed down to Yonge/College to meet my friend Jamie for lunch. Also we stayed at the Urban Oasis, the Don Valley Hotel (for my first but not last time this year!), and discovered that the only thing there was nearby to eat that we didn’t need to drive to was a Tim Hortons. So our food expenses were quite low. After the clinic, Kyle from Ontario Blind Sport drove us back to the hotel, and we took an Uber to the nearest(-ish?) subway station, then headed across the city to the airport. We dumped our stuff, and grabbed an (expensive, thanks airport fee!) uber to a restaurant 5 minutes away to meet Dia for dinner at Jack Astor’s (also the first but not last time I’d go to Jack Astor’s this year!)

March.
March brought us back to Minneapolis for a long weekend away and to visit Dean. I think I made two trips to Punch, one with my mom, aunt, and Dean (and Derek?) and one with Heather and Scott (and service dog Becca!). We also went to Cossetta market and I ate desserts for breakfast and made a couple trips to Caribou Coffee. On Easter morning we had to go water the concrete canoe that Dean was helping build (yes, water the canoe. You read that right.), and I found this free book shelf (like shelf of free books) in the Civil Engineering building so I took one about earthquake simulation which I should probably read. We went to Eli’s for breakfast where I had the greatest parfait of ever. After that, we headed to Annandale, to have Easter lunch (dinner? something.) with Dean’s girlfriend Jackie’s family. Either before or after lunch we made a stop in Albertville to shop, and then returned home via Fargo.

April.
In April, Assistant Coach Jessica, Steve, Gerry, TJ and I headed to Quebec City for Goalball Nationals. We picked up our fourth player, Clement, from BC (I mean, he flew in with his other team and then hung with us and played for Team Toba). We had a tiny plane with no in-seat power on the way from Ottawa to Quebec City and also row 13 was at the front so we assumed there was no in-seat power because we didn’t want to drain the battery, per Steve. From Winnipeg to Ottawa, TJ got moved to first class and did not like it since he was far away form everyone. 

Quebec City was interesting, as I do not speak any French and we were outside downtown/The Old City where people are more tolerant of non-French-speakers. Thankfully, Jessica speaks French, so does Clem (on top of like 3+ other languages aside from English) and was able to do things like assist us ordering McDonalds and such. Also I’m a jerk coach and in both Montreal and Quebec City would not let anybody get poutine until we were done playing because that is not fuelling for performance. We played some hard games, and got ourselves 3 points on the scoreboard against Quebec in one game which is excellent for us—we are working on it! Sadly, the tournament ends our playing season for the year, so we go home and don’t get to play goalball again for nearly 6 months.

May.
I was home for like a week, and then jumped back on a plane and headed back to Toronto for the Asthma Society of Canada’s National Asthma Patient Alliance meeting and the ASC’s annual conference, this year on severe asthma. I went in a day early and met up with Annette and Alies at Women’s College Hospital where we chatted patient advocacy for awhile, and then Annette and her husband drove me up to my Airbnb on Avenue Road. My host was super freaking cool, a music teacher who uses the apartment as her teaching studio on weekdays and rents from Thursday through Monday—her own apartment is two floors up. While I had some snafus with Uber trying to get back over to Yonge and College during morning rush hour (oops), I managed to make my Monday morning coffee date with Michal Kapral. You may know Michal from such commercials as The guy who juggles and runs (called joggling) in that Fairfield by Marriott commercial).
At the meetings, conference and gala dinner, I reconnected with a lot of fellow patient advocates, as well as Dr. Vethanayagam from University of Alberta (whom I’ve been assisting with a research study on impact of primary care access on asthma control in Canada – have asthma? Let’s get you hooked up with the study).

Because I can’t do anything normal, I stayed an extra couple nights in Toronto, visited Humbercrest United Church and my friend Jess on Sunday, we went for pizza and wandered Bloor Street, and then went to another hotel for the night. I grabbed a shuttle to Pearson in the morning, and flew off to Minneapolis, otherwise I’d just have been driving there with my aunt and grandma 2 days later anyways (like Ottawa, it was cheaper to fly there actually). I spent a night at a hotel by Mall of America, and wandered the Mall by myself for like four hours, which was the only real way of amusing myself. I headed over to the UMN campus for the next few days, where I crashed on an air mattress at Dean’s apartment (I had my own room, AKA the study, while the boys that live there have to share, ha ha). Since it was end of term and all, they were busy with projects and stuff, except for Derek basically so he and I watched some show with conservation officers arresting people for fishing without licenses or whatnot (I don’t recall the name, of course), and I wandered campus and ate at Mesa Pizza by myself and ordered a $4 Chipotle kids meal online which was pretty sweet for $4, and spent too much money at CVS. My aunt and grandma drove down for Dean’s grad on Friday, and the grad party at Jackie’s apartment on Saturday (and dinner with Jackie’s family on Thursday, and other shenanigans). Honestly, I contemplated tacking a trip onto California here, too, but instead I drove back from Minneapolis with Dean. Seemed less expensive ;).

June.
June and July sadly did not involve any airplanes, but I did spend a fair bit of time out at the cabin so not all was lost. 😉 We got some kayaks in June, fulfilling a long-term goal. Hooray kayaks!

July.
While also no airplanes, I spent a week out at the cabin in July, and did a ton of writing (mostly work, evidently from this blog).

August.
August is more of a What I Did On My Summer Vacation type month. Steve managed to get tickets to the last Tragically Hip show in Winnipeg, which was killer and amazing and sad all at the same time, but mostly amazing. A week and a half later friend Jess (the same one who is the minister at the church in Toronto and the one who is not Assistant Coach Jessica. Life is confusing, I know, I have accidentally texted things relating to ministry to the wrong Jessica.) and I went on an adventure to Alberta to see dinosaurs and eat pizza. We took cardboard Jesus with us, and He seems to have led us into adventures including being invited to and attending a corporate party we were probably not actually supposed to be at in Lethbridge, finding this town that evidently revolves around its Bible College and has a lot of… um… interesting bible-related items in its dollar store, which was raved about to us by the lady at the front desk at our hotel—which was the Best Western Diamond Inn—and we maybe could not actually stop giggling the whole time we were in that dollar store (which repeated the next day when we got invited to the corporate party and then saw the guy in the cowboy hat who invited us AS THE ELEVATOR DOOR WAS CLOSING so we had to restrain ourselves for a moment). The Bible College Town, AKA Three Hills, did indeed have Three Hills (“It’s down the street where I live,” were the directions given to us by the lady in the grocery store… Which was beside the Dollar Store and across the street from the Restaurant With The Funny Tasting Water which we determined from Google and the Alberta Health Service got its funny taste from uranium… Yes… and was still safe?). Other proper gems in Three Hills were the IDA store (it was fascinating and had literally everything and I bought a pizza box there), and this gift store book store thing where I bought a copy of On The Road by Jack Kerouac which we assume was taken away from Bible School kids because it was the racy version or something. I got it for $4. I’ve still yet to read it.

I really have to do a proper blog post about Alberta because we had so many weird stories, and I haven’t even mentioned any of the pizza we ate or the dinosaurs or whatever. Jess and I are going to do a podcast about that but we’re kind of bad at coordination. I’ll tell you all more about Alberta one day, because it was epic. We also saw my friend Danielle, and watched the last Tragically Hip show live at Olympic Plaza in Calgary, where we bounced from the outdoor showing to to the Hyatt we were staying in (thanks, Hotels.com rewards!) and such, and sat on the grass with a bunch of Albertans and celebrated The Hip—our country’s band, with the rest of our country.
Yeah, that’s right America and everywhere else: our country basically shut down for a concert. This is why Canada is friggen amazing. <3

September.
In September, I started the month puppy-sitting my bud Guide Dog Murray while Steve went to the reserve for a sweat. We went out to the lake for the day, and then he just mostly sat around at my feet and/or on my feet for the rest of the weekend and we went for random wanders.
Steve was also accepted as an ePatient Scholar to the MedicineX conference at Stanford. By some miracle, and thanks to Swan Lake First Nation and MedX, I was able to attend with him as his guide. I mean, of course Murray came, too. While MedX was very different from previous years, we met a lot of amazing people, reconnected with Dia (and in my case, Bill—both were ePatient Scholars), as well as several other ePatient scholars I’d met before or knew online that it felt like it wasn’t our first time meeting. On the first day of the conference, Steve had been selected to attend the IDEO Design Challenge—we spent the morning touring the IDEO design firm building in Palo Alto, and the late morning and afternoon creating and prototyping our designs and then presenting them—you can watch our group’s video here (by the way, that is the most high pressure editing I’ve EVER done).
We also met up with asthma app developer Yang, who is working on OurBreeze, a really cool asthma tracking app that is actually integrating really useful features. On our last night, Bill, Steve and I pulled an all nighter because who wants to sleep when you have to leave at 4 AM for your flight? Nooope! 
Both on the way there and back, Steve and I flew through Minneapolis, so we got to meet up with Heather a couple times who works at MSP. Murray got to meet service dog Becca, but they were both well behaved and didn’t really react to one another too much. 

September wrapped up with the Manitoba Blind Sport demo day, where I helped lead a session on goalball (and probably recruited a new player, hopefully!) and did some fundamental movement skills activities with kids, and the help of some students from the University of Winnipeg. You know, another one of those days where I take a stack of hula hoops on the bus—that’s my life alright.

October.
I think I spent all of October blogging for ADHD/LD awareness month, as well as planking and meditating. And probably working. I also got my flu shot at Special O practice, and helped with a wheelchair basketball and wheelchair tennis demo for rehab medicine residents, which was super fun.

November.
November was Nanowrimo, and also it basically just happened. I unexpectedly, on about 5 days notice, ended up in Toronto again for a conference thing, and Bill and Dia were there. It’s wild that I not only saw Dia four times this year, but that I also saw Bill three times! On World Diabetes Day, I flew into Toronto and had lunch with my friend Jamie, who has type 1 diabetes, which was purely coincidence but we did have matchy blue on! From there, I took my stuff to the Indigo Starbucks where I did not even need to use my iPhone to navigate thank you very much, and camped out and did work until Dia popped up to hang out and have coffee and then we went to have delicious vegetarian things at a cute little restaurant that we managed to get seated at right away. Then Dia ensured Bill and I found each other in a subway station (which was apparently confusing and good that Dia was there for directions). Bill and I found a greek restaurant (where I ate baclava still full from the veggie burger I’d had earlier) in Greektown, and then a Shoppers Drug Mart so he could buy soda water (I tried to buy snacks and then didn’t buy snacks) and then Ubered it over to… The Don Valley Hotel (!!) which was apparently very confusing for our Uber driver. The next day we attended the event and tweeted up a storm, and then Bill took his tweeting up a notch, and did his first twitter chat, the #hcldr chat on Pharmacare, in Jack Astor’s (!!). I had this delicious brownie stuffed in a cookie thing as well as fries and I cheese pan bread because we were there forever commandeering a booth for like 8 for 3 people because we were hopeful people would join us for a tweetup. (Spoiler alert: They didn’t, except Dia.) 
Jenna from the ASC was also at the event, and I will confess that we started making buzzword bingo cards and playing during sessions since they weren’t exactly patient focused… Fortunately, I had the giant Lucky Charms Sandwich Cookie that Dia brought me from cake & loaf bakery to keep me full of deliciousness and sugar. (Seriously it took me three sittings to eat that thing, so friggen good.)
After the event, I trekked friggen across Toronto in rush hour to a hotel by the airport (I’ve stayed in too many hotels, I can’t remember which). A least this time, unlike in May, the subway was not out for maintenance requiring use of shuttle buses, because that was terrible. I paid $16 or something to get mozza sticks on Skip the Dishes (which by the way I did not expense, because I recognize that ridiculousness) and bought stuff from the vending machines and then the next day discovered that the donut shop I’d seen on Google Maps was literally behind my hotel, but it was dark when I arrived so yeeeah. Dia and I did late breakfast, and then she dropped me at Kipling Station where I got on a train and realized I didn’t have a transfer so I got off of it before it moved and managed to get back on. Then I made my way from Jane to Humbercrest to meet Jess. We went to some adorable shops on Jane Street and then headed to Queen Margherita Pizza for lunch and it was lovely. She also gave me gifts from Korea which were super fun and adorable! <3 (I took her a chip dip donut which seems questionable but I just wanted SOMEONE to try one and she was my lady! So um yeah she wins in the gift giving department :).)

While I got kind of lost when I got to Pearson (heyyo getting off the bus at the wrong terminal!) there was all of one person ahead of me in the NEXUS line so I got through that bit super quick. Then it took me approximately a year to find my gate because I honestly thought it was just down a flight of stairs but it was down a flight then down a hall and up and down and up and down and etc and then I finally found it by a Booster Juice which I HAD BEEN LOOKING FOR.

  Trying to find gate B3. Still don’t know if B6 even exists. B3 was down many escalators and moving walkways and up many escalators. Pearson is weird. (November 17)

So hooray! Otherwise I just wrote all month basically. 

December.
I’ve done not a lot of note in December, I think. There’s been a lot of snow so it makes the outdoors unattractive (actually, it’s been fairly nice, so it just makes walking to the bus stop REALLY hard, especially as my bus stop is like ten minutes away). I’ve gone to our two proper non-chain donut shops in the city, had work scaled back a bit, signed a new contract (yay and also hit me up if you are looking for a writer for anything!). Steve, Gerry and I did a goalball demo for the Sport Manitoba staff which was super fun. I finished my work for the month early because who wants to work at Christmastime?
I got a 3Doodler 3D Pen for Christmas but it kept jamming so we took it back and I ordered a Scribbler on Amazon, which should be here next week. When it worked, the 3Doodler was lots of fun, so hopefully the Scribbler is equally fun (and with cheaper plastic and less jamming FTW). Dean got Settlers of Catan for Christmas so I got to play Catan for the first time and it is quite fun. 

And while I probably missed a few things, that’s been the year mostly. At least the good of it—which there was a lot of. I mean, I’m happiest when I’m flying, and 2016 had me chalk up 18 flights (I couldn’t figure out how to get it up to 20, well without doing something stupid like flying to Toronto via Calgary or some nonsense.)

Of course, I did not expect much of this out of 2016… Curious to see what 2017 brings!

(Also, pictures to come when I can actually get Facebook to connect to a collage maker thing. AKA when I have patience.)

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I’ve been on this huge audiobook kick the last week. As in, since December 12, I have read 8 books. (This is what happens when I finish my work early/do not have enough work to do. Honestly, this is fun but I’d rather be writing.) Maybe I’m just trying to hit my 40 book goal for 2016—I am at 26. The answer seems like yeah, right.

Through the Centre for Equitable Library Access program (CELA), Canadians with print disabilities can access a variety of audio or braille books on loan, for free. Most of these books are recorded by the CNIB (Canadian National Institute for the Blind), and as such, Canadian authors are well-featured, and I’ve actually been able to find a book on goalball in the collection. Following Margaret Trudeau’s Changing My Mind, I read Invisible: My Journey Through Vision and Hearing Loss by Ruth Silver.

On attending a conference about promoting independence for those who are both hard of hearing and visually impaired (Deafblind or deaf-blind), she writes:

There was only one speaker who was deaf-blind.
—Ruth Silver in Invisible: My Journey Through Vision and Hearing Loss 

Immediately, I rewound. I listened again, and shook my head.
Typical.

I do not know for certain what year Ruth Silver attended this event in question, of which she wrote “There was only one speaker who was deaf-blind,” prior to starting the Centre for Deaf-Blind Persons in Milwaukee in 1983. She published the memoir in 2012. In any event, that is twenty nine years prior to the book’s publication, and thirty three years ago as of 2016.

I do know that not much has changed.

In mid-November, I had the opportunity to attend an event in Toronto, one that had patients in the title no less. While matters were not “solved”, in response to Twitter-vocalization regarding true patient inclusion by Bill and I, the organizer reached out to us via e-mail following the event to “address” our concerns. The crux of the matter is, even an event that was meant for patients, did not feature a single patient speaking on the matter at hand. While you can scroll back in my Twitter feed or contact me directly to learn more, I’m not going to give nods to the event itself. One, because as much as this event frustrated me, I want to believe they had good intentions even if they were way off the mark, and two, because I believe that these nonprofits are likely doing their patient communities good: it is not up to me to speak on the actual work of these groups. (Disclosure: They paid my travel and expenses, they being pharma, I presume).

So here it is again. There was not one single patient on the agenda. I don’t want to hear any of that bogus “we are all patients” crud (nor that taxpayer BS)—yes at some time we are all patients. However, there are those of us who are chronic patients, reliant on medicine to stay healthy and/or alive.

How sad is it that as this uprising, somewhat-bright, restless collective of humans craving better, how is it we have not gotten this straight in thirty three years?

I wish I knew. Documents like the excellent Patients Included Charter for Conferences get us closer. But they need to be implemented, advocated for in themselves. And we need Canadian patients to be in on, in for this movement, too.

It’s been 33 years. And we’re only starting to figure this out. The uprising is bottom-up, not top-down. I mean, or the reverse, depending on how you view who is in power.

so must we demonstrate
that we can get it straight?
we painted a picture
now we’re drowning in the paint
let’s figure out what the fuck it’s about
before the picture we painted
chews us up and spits us out 

sick of painting in black and white
my pen is dry, now i’m uptight
so sick of limiting myself to fit your definition.

redefine.

—redefine, incubus

We are well overdue to break the typical.
Probably, well overdue by well over 33 years. 

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adhd fact friday

Week Four Fact

Sensory Processing Disorder and ADHD often coexist, but sensory issues are in themselves common for people with ADHD.

I always just presumed I was right when I said I was secretly seven or twelve or whatever in relation to my reluctance to eat tons of foods for whatever reason—often texture. In fact, it can be an ADHD thing. While I worked in daycare for years with no issue, I’ve always had issues with places like bars or restaurant lounges with loud music and people trying to talk over it at the same time, combinations of dim and neon lighting. I can do concerts, but I think that’s because there’s no other place my attention is shifting between—I’m not trying to converse or anything. Face paint? Nope, nope, nope (and I don’t wear make-up and I wonder if it’s also related? Or also that I cannot be bothered). I’m fortunate that my life uniform can be hoodies, t-shirts, jeans and shorts. And runners—sandals aren’t even a thing I own, save for a few pairs of flip flops I attempt to tolerate going from hotel rooms to hotel pools (sand at beaches? Ick.). Foods? Yep, I’m secretly seven. Salsa, oatmeal and certain pasta sauces even fall into the category of things that I can’t tolerate texture wise. The smells of other foods will do it, or the taste—anything vinegar-y falls into both of these categories. I could list all the foods I can think of that I dislike but we’d be here awhile ;). (I just bought noise cancelling earphones which should actually help with some of the sound sensitivity issues.)

I haven’t been diagnosed with Sensory Processing Disorder, but I wouldn’t be surprised. However, at this point in my life I’m not sure knowing would solve a whole lot. The link to ADHD has been made pretty clear, and that’s good enough for me. Learn more here. 

Oh, and I should add that the weighted blanket thing has been great for me. Although my current rice-ziplocs-and-tape blanket has sprung a leak so I haven’t been able to use it for lack of remembering to fix it during the day. Put it on the to-do list!