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:

This.

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

I replied

Um, FACT.
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.

It is the first day of Fall, the people of the internet (aka my friends on Facebook) are telling me. It’s kind of hard to believe given I got back from beautiful California less than a week ago where it feels like summer and is generally pretty. Alas, my favourite season—Fall—is upon us, and I engaged in an (iced) pumpkin spice chai at Vancouver airport at probably ten-something PM on Monday night.  (Pumpkin spice chai is amazing. I was getting ehhh about normal pumpkin spice lattes, honestly, and I am thrilled by pumpkin spice chai lattes.)

And is obligatory on the first day of Fall, listening to Come Winter by Daphne Loves Derby (on repeat), as has been my general habit since about 2014, if not earlier.

If you’ve got Apple Music, here’s a link to a slightly different EP version that I’m enjoying.

Fall is my favourite season not just because of pumpkin spice. I enjoy the cooler weather, the jeans-and-hoodies combo, the foray into toque-season (without the brutal cold associated with toque season), the fact that Goalball starts soon (and archery!), the fact that my lungs generally like Fall, and the fact that I get back to a bit more solid of a routine—for the lack of routine I generally have, even in the non-Summer months. Despite some of the worst moments of my life happening in the beginning portion of Fall (looking at you, 2013 and 2014, and even 2016), these have all come with resolution attached—“part of a change for better” (I Swear This Place is Haunted, A Skylit Drive)—or at least a piece of resolution that produced a change I can, at least now, feel positively about.

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This year, again, fresh off a return from Stanford Medicine X, and subsequent #MedXHangover and ongoing recovery, I feel that sense of renewal, that sense of recharged passion and purpose for creating change, both in myself and in the world. It doesn’t hurt that I’ve got some other advocacy-related travel opportunities in the works (travel may exhaust people but it energizes me), or that I met so many amazing people last weekend at MedX. It doesn’t hurt that the people I met and the experience I had at IDEO for the Medicine X – IDEO Design Challenge re-inspired me to think differently, creatively, in terms of “How Might We”s and innovation and possibility and better. No, spending a glorious two days with one of my favourite people on earth, Stephen, in Santa Cruz to relax and recharge even prior to embarking on the Medicine X whirlwind of inspiration, that didn’t hurt either. Meeting a dozen Canadians at MedX reminded me that things are possible, change is possible, even in our slow-moving, lack-of-progress medical system (although I maintain Toronto is more receptive to change than Winnipeg/Manitoba/our ridiculous healthcare-killing Conservative Government is). I am ready to do more. Batteries recharged.

I am re-energized. Re-inspired. Thanks both to California, to the MedX Family, to friends, and to the crispness of Fall.

Well, I’m sure another pumpkin spice chai latte wouldn’t hurt, either.

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.

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. 

Week Three Fact:
adhd fact fridayADHD sometimes comes with the opposite of being unable or having difficulty focusing. Hyperfocus is just what it sounds like: intense periods of focus, which make attention deficit disorder all the more confusing.

Yes, it seems paradoxical. Yet hyperfocus is very real to many ADHDers, myself included—ADHD is an “attention regulation disorder”—as difficult as it can be for us to focus on tasks that are boring or not mentally stimulating, it can be equally difficult for us to redirect our attention from something that is fun or interesting.

Hyperfocus can be the saving grace of people with ADHD with a deadline ahead of them, or a massive obstacle when we find something fun or enjoyable… and should be doing other things. However, sometimes we get so sucked in that it can be extremely hard to break our focus. Even people talking directly to us might not be enough to interrupt us—the polar opposite of what people perceive as our attention deficit selves.

For myself, I think hyperfocus is the reason I could read book after book when I was younger, especially when I had nothing else mentally interesting to do: if the book was interesting, that was the only place my attention went.

Day 21 Challenge Update

Plank: 155 seconds while on FaceTime with Kat. Which made it easier, actually.

Meditation: I completed the Bite Size Meditation series on Smiling Mind.