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.

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.