patient inclusion: how long overdue?

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. 

faded reflection: last week, from now.

I spent last week at the cabin.

I spent some time on the water in the kayak, some time reading [new books: Evolution, Me & Other Freaks of Nature, On My Own (Diary of a Teenage Girl), The First Part Last (Heaven #2) (unsure of what Heaven #1 is); reread Falling Up (Diary of a Teenage Girl) although i remembered none of it), and continued on Islands and Insulin.

Something also sparked in me to pick up the Bible again. What a concept for me. Picking up the Bible, in this case, was putting the Bible Gateway app back on my phone. And here’s the thing, I was actually excited about it.

I journaled. Not a ridiculous amount, but I got my head back out of me or back in check in the way that only writing seems to do for me—really, the best therapy. I considered stuff I need to work on, and “iterations of myself I need to get back to”. Like the whole exercising/nutrition/journaling/mediating/praying thing.

I saw a sunrise—it moved me to stumble back to my bed on the way back from the bathroom at 5 AM for my phone to take a picture—to not miss the moment and not think it was just a dream in the morning.

http://i2.wp.com/farm9.staticflickr.com/8523/27984665303_fe893a1c51.jpg?resize=500%2C375&ssl=1

I created. This was, actually, before the sunrise sighting.

http://i1.wp.com/farm9.staticflickr.com/8607/28568145586_0c68c98255.jpg?resize=387%2C500&ssl=1

I played mindless games (actually, Cooking Fever is kind of stressful, my goodness), and looked for Pokemon.

I tried to be present, mindful, as much as my lack of routine and ADHD allows.

http://i0.wp.com/farm8.staticflickr.com/7663/28568148226_7080637c1b.jpg?resize=375%2C500&ssl=1

I did some work when I felt like it. It’s part of my life, no matter how much on “holidays” people kept saying we were on. I chose to not be on vacation for the times I spent working. It’s easy when you like what you do for work and can work anywhere.

It was really, though, about coming back to where I need to be; about reflecting on self-care and seeing what I want more of in my life. And, I found a lot of good stuff in the process—stuff I need to work on. Like talking to God and seeing Him in my world—opening my eyes and allowing Him to open my eyes.

Edit: After I published this, I found this live set from Lacey Sturm on YouTube, at one point she says, “God is always pursuing you, but do we always pursue Him?” 
I think my answer is obvious; but that the question is perfect.

i feel Your eyes crawling over me
as though i am something more than me
but i don’t have anything good enough to say
i did not make myself this way

i’ll show you what He did
but i won’t take the credit
it’s not mine anyway
i just held the pen that day

and i don’t deserve this
this time right now
it’s not something for which
i can take the bow
and i don’t deserve this
it wasn’t me
i can’t take glory
for something that i can’t be
i don’t deserve this

i know what perfection is like
and i cannot stand before its might
and i’m so far from what You think that i must be
i just drown myself in mercy 

and all the art that i supposedly create
is simply a faded reflection of something He’s already made. 

penholder, flyleaf

But the further I go, the further I wander, the more I realize I need God. My friend Jessica posted a picture on Instagram last week that I needed—it said “Prayer is not a ‘spare wheel’ that you pull out when you’re in trouble, but it is a ‘steering wheel’ that directs the right path throughout life.” This is something I know, but I fall off track, and a reminder I need. I want to be well.

my scars are Yours today, this story ends so good
i love You and i understand that You stood where i stand
[thank You.] […] no matter what You’re going to break my shell.
i’m done healing—i’m done healing
i’m sorry, flyleaf 

Oh and totally out of the vibe of this post, but this makes me laugh so much:

http://i0.wp.com/farm9.staticflickr.com/8447/28600570735_d85e96b480.jpg?resize=398%2C398&ssl=1

Such doge.

reading with my ears: on (audio)books.

Last year, my friend Beth (founder of Smart Girls with ADHD) shared her affinity for audiobooks on her blog.

I disagreed completely. You can’t listen to music while reading an audiobook, and I like blocking out auditory distractions with music (well, okay, you can, but that requires wizardry). I’d tried one audiobook around that time, Drums, Girls and Dangerous Pie, and while the story immersed me, I preferred reading its sequel After Ever After as an eBook (I ended up also buying Dangerous Pie as an eBook to re-read). Plus, I can read with my eyes just fine (I mean, the whole ADHD jumping paragraphs bit and rereading stuff is annoying but hey, whatever, that’s my life.)

Well, here we are a year later. And I get it.

ADHD/LD and Reading: Earphones

Guys, you can play games on your phone while reading audiobooks. You can walk around the mall while reading audiobooks. If your fellow passengers aren’t too chatty, you can read audiobooks on the bus even if you have motion sickness (which I do not, but whatever, I can still look for my stop since the speakers do not always work, ahem Transit). These things are all great for mind-wandering ADHDers who need to keep some part of their body moving beyond flipping pages, and multi-task to a degree to focus… And so we’re more likely to not miss our bus stops maybe, but that happens regardless so I’m not holding my breath on audiobooks helping that too much. 😉 Sometimes I have to rewind, but OverDrive (the player my—and many—libraries uses) has a skip backwards 15 seconds button just for the spacing out times or the people nearby getting too loud times. Oh, and recall that they said in my assessment that I’m more likely to retain information that I get through the auditory bit of my brain than the visual bit.

EDIT: Oh, and you can play Pokemon Go while reading. Heyyyyo.

IT ALL MAKES SENSE.

I set myself a goal to read 40 books this year (last year I think I tried to read 75 books and failed, obviously, reading 30, so 40 seemed like enough of a jump). Except now it’s July so we are more than halfway through 2016 and I’ve read, um, not even half. (If you want to bug me on GoodReads, be my friend!)

Here’s what I’ve read so far:

  • Freak the Mighty (Rodman Philbrick)
  • Smiling Mind – Mindfulness Made Easy
  • A Mother’s Reckoning – Living in the Aftermath of Tragedy (Sue Klebold)
  • The Summer Before [the Baby-Sitters Club] (Ann M. Martin)
  • Shot in the Dark (Janet M. Whyte) [Audio]
  • Every Day (David Levithan) [Audio]
  • After (Amy Efaw) [Audio]

Here’s what I’m in the middle of:

  • Islands and Insulin (Erin Spineto)
  • Millersville (Brendan Detzner)

Some catching up is in order.

Maybe with my ears.