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. 

[catching up] adhd fact friday #3 [21/31]

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.

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.

2015 reading challenge: 30-ish of 75

At the beginning of the year, I decided I was going to read 75 books after seeing the Reading Challenge feature on goodreads. (We should be friends on there.)

Yeah, 75 books was a bit ambitious. It’s December 23 and I’ve read 30 (technically 32) books. And probably several half books which count for nothing.

Dear Nobody: The True Diary of Mary Rose. As opposed to Go Ask Alice, allegedly this is an actually-legit diary of a teenage girl and her experiences with cystic fibrosis, drugs, and alcohol. 

Rumours – Lingering Echoes Series 0.5 | Erica Kiefer. A quick read for me, there were a lot of questions that didn’t get answered until the end (a good thing, as they got answered) about the story of a teenager dealing with her feelings of responsibility in the death of her young cousin. I got this one for free or cheap as found on BookBub.

The Reason | Lacey Sturm. I actually read this one twice (at least) this year. I’ve always wondered more about Lacey Sturm’s testimony, and her life prior to meeting Jesus, Lacey is a talented writer, and I really enjoyed this book.

will grayson will grayson | John Green and David Levithan. Polar-opposite Will Graysons (two of them, yes) meet one day in Chicago—and as much as they try to avoid one another, their worlds intertwine. I’d been waiting to read this forever, and it was another that sucked me in and I consumed in two days.

Beyond Magenta: Transgender Teens Share Their Stories. A very interesting book, several teens in various stages of transition share their stories about who they are.

My Brief History | Stephen Hawking. I honestly thought this would be more interesting than it was—I skipped a lot of pages because, for whatever reason, I didn’t think there would be as much very complicated physics and stuff in this book as there was.

Fifty Shades of Grey | E. L. James. Don’t worry, I found a PDF online. Classified on goodreads as “books that hype made me read”, I spent the entirety of the time reading this book alternately messaging passages to my friend Kyra and trying not to a) throw up (mostly from the bad writing, but occasionally the content) and b) my iPad across the room.

Nothing Special – Stupid Fast #2 | Geoff Herbach. A fantastic teen book with a guy protagonist, and a realistic one at that. Still recovering from their dad’s suicide years ago, football star Felton’s brother goes missing prompting him to miss football camp in exchange for an impromptu cross-country drive to find his brother. I tore through this one on a mini-road trip.

Stupid Fast | Geoff Herbach. Reading these books out of order, I promptly dove into Stupid Fast after reading Nothing Special. I was confused a lot in Stupid Fast, and this cleared up a lot of stuff about Andrew and Felton, and their friends, and who the heck Felton was writing all the letters to in Stupid Fast (his girlfriend. Go figure.)

The Road to Becoming | Jenny Simmons. Easily my favourite book this year—I’ve read it multiple times already since receiving the Kickstarter edition, and Jenny’s stories and reflections on her life following the end of Addison Road, before, and during her time with the band, and her family. “A complete meltdown in the spaghetti aisle”, outrage at the Iowa Bureau of Transportation, and life on the road—what’s not to love? Also I laughed out loud on a bus a few times.

Breaking Free | sm koz. Thinking her best friend’s death in a car accident was her fault, Kelsie struggles with cutting, and is recommended to attend Wilderness Therapy. With enough going on for Kelsie, even if not healing—love, angst, maybe true friendship, adventure—and unexpected tragedy—to keep me engaged, I tore through this one in a day or two as well. It was a relatively easy read, but still worthwhile.

Some Assembly Required: The Not-So-Secret Life of a Transgender Teen | Arin Andrews. Another interesting read about Arin’s transition process, Some Assembly Required gave me a lot more insight into one person’s perspective on discovering their true gender identity and how he—and his family and friends—dealt with “assembling” his true self.

This Star Won’t Go Out | Esther Earl. Of Nerdfighteria fame, Esther’s diary of life as a teenager with cancer holds its own as a book. Though a bit confusing at times (it’s a journal with other work mixed in, after all), I mostly enjoyed TSWGO and learning more about Esther.

Thunder Dog: The True Story of a Blind Man, His Guide Dog, and the Triumph of Trust at Ground Zero | Michael Hingson. Years and years ago I saw the “Inside 9/11” documentary, and since then I’ve had this odd interest in understanding more about that day in 2001. Having friends with guide dogs, Michael’s story captivated me as he and Roselle, his Guide Dog started a normal day and unexpectedly found themselves with hundreds of others descending the thousands of stairs in second tower of the World Trade Centre. Michael describes that day with Roselle in vivid detail and how it impacted his life, as well as Roselle’s from that day forward. [I couldn’t put this one down, either.]

The Blue Haired Boy: Faking Normal 0.5 | Courtney C. Stevens. Book might have been better if I’d read “Faking Normal 1” first, but this is what happens when I find books for free on BookBub. Anyways, teenagers run away from their lives, meet on a bus, and dye their hair blue with Kool-Aid in the bus bathroom. The book wasn’t memorable enough for me to rate, but I mean, it was following Thunder Dog, so, there’s that.

Raising My Rainbow: Adventures in Raising a Fabulous, Gender-Creative Son | Lori Duron. If you can escape from the cute little blue denim Converse-like shoes with pink laces on the front cover, I’m not sure we can be friends ;). Lori writes her story of knowing from a very young age that her son did not necessarily identify within binaric gender. Their story is one of exploration, and is very honest in explaining how Lori and her husband work through the criticism from those around them, while embracing their son for who he is.

Fallout | Nikki Tate. Apparently I read books about people who have close people to them who die? This book I think contained a lot of poetry which I did not enjoy, and also did not help the book make sense to me.

Girl, Interrupted | Susanna Kaysen. I didn’t really realize that this was a move, but I knew the title sounded familiar. Typical for my knowledge of pop/film culture. Anyways, Kaysen vividly documents her time in a psychiatric hospital while being treated for borderline personality disorder, from being sent from her physician’s office to the hospital, to her discharge. It was a fast read, and I should probably re-read it because I’m fuzzy on details. Obviously.

Blind | Rachel DeWoskin. Emma loses her sight in a fireworks accident, and then learns how to navigate her life as one usually does as a teenager with an acquired disability (she also has a non-guide dog that helps her). Now, my sarcasm aside, the book deals with the “apparent” suicide of a classmate, and the students having secret meetings in some sort of cave to deal with their grief/questions. Throughout the book, Emma grieves her loss of sight which is made obvious to her in seeing her classmates’ reactions to their peer’s death. I’m not doing the book justice, but it was pretty decent and shows Emma’s growing independence as she adapts to life without sight, and in the end fairly accurately depicts at least what I know of navigating life with a vision impairment.

Ghost Boy – Martin Pistorius. Martin develops a condition that essentially traps him inside his own mind for ten years, requiring him to be cared for full-time. While a bit dry at times, this book is a very interesting account not only of Martin’s experience, but also, the effects of what people say when they think you can’t hear them…

Treacherous Love | Lurlene McDaniel. Student falls in love with his teacher, she has mutual feelings, and things go basically as anticipated as they face the consequences of her actions.

El Deafo | Cece Bell. A graphic novel/comic for pre-teens, El Deafo is a pretty adorable look at a rabbit with hearing loss, and how she navigates her world… with some superpowers—like her imagination—too. 

Damaged | Amy Reed. Okay, sound familiar? Kinsey’s best friend dies in a car crash, Kinsey was driving. Kinsey runs off with a guy across the country, and the guy is equally messed-up from his own issues. Issues ensue and they “discover they can’t outrun pain”. It was interesting, but nothing special.

Don’t Call Me Sugarbaby | Dorothy Joan Harris. I found this book in my school library in grade 8, and haven’t been able to track it down since. I finally caved and ordered it from Amazon. Allison is a 7th grader and is diagnosed with type 1 diabetes. Set in the 80s, all I thought of re-reading this with a lot more diabetes knowledge than before, is how much T1D management and technology has changed since this book came out.

What I Want | L.N. Cronk. I read this, rated it 4 stars, and don’t remember a damn thing about it. Apparently nobody else does either because nobody on Goodreads has actually written a review.

Grace, Under Pressure: A girl with Asperger’s and her marathon mom | Sophie Walker. After years of struggling in many ways and excelling in others, Grace is diagnosed with Asperger Syndrome around the 4th grade. Her mom takes up running (and eventually marathons) to cope with being the single-mom to a girl who’s sweet and loving but gets in trouble and feels very different from her peers, even before her diagnosis. With a later diagnosis, Grace and Sophie struggle to navigate the educational system to provide Grace the support she needs—an issue I can totally identify with.

ADHD Wellness Program | Cheryl Healy. Some excerpts from my Goodreads review: “Bullshit. I wish I could give this no stars. It’s like reading a list that primarily consists of unscientific ‘data’. Don’t waste your time if you’re really dealing with ADHD and/or trying to become more wholly balanced while keeping science, including psychology, as your focus. […] one should always become wary when there are no citations within a nonfiction work. […] every part of me that has struggled […] screams against the claims that ADHD is a result of things I am doing wrong, and that ADHD is not real: ADHD IS REAL.” 

The end. Bullshit. Thank God it was free.

Orange is the New Black: My Year in a Women’s Prison | Piper Kerman. I expected to not like this after being so engrossed in the Netflix series, but it was super captivating and a really well written. Read it.

Beautiful Affliction | Lene Fogelberg. Lene is sick and doesn’t know why. She has a lot of unexplained symptoms, and after moving to the US from Sweden, she is finally diagnosed with a congenital heart defect that has been gradually stealing away her life for years. As many doctors work together to unravel the mystery and fix Lene’s heart, Lene must cope with the fact that she may not survive surgery, and how to deal with including her husband and young daughters—that she should never have survived the birth of—in the process. (Spoiler-non-spoiler: She wrote the book, thus, she lived.)

Wide Awake and Dreaming | Julie Flygare. Fellow MedicineX ePatient from 2015, Julie’s book about life with narcolepsy was gripping, informative, and really helped me to better understand narcolepsy and cataplexy. Highly recommend it for your next read. I plowed through it in less than a day (as I’ve heard many others have), a testament to how well-written and interesting Julie’s story is.

The bonus two—out of order: I don’t remember when I read these.

Sometimes, you just need an easy thing to read. It’s not cheating to read kids books, right? I mean, they’re kids chapter books.

Junie B. First Grader: Jingle Bells, Batman Smells (P.S. So Does May.) | Barbara Park. Look, I am telling you, if you need to read and laugh a little and not think, go pick up some Junie B. I got them through my library’s eBook selection on Overdrive.

Junie B. First Grader: Dumb Bunny. All the kids get to do an easter egg hunt, but… Junie B. has to be the Easter bunny at her friend Lucille’s Easter party which is arguably less fun, probably, then finding eggs. Following many other trials, obviously this is the catastrophe of the week in Junie B.’s first-grade life. (I mean, that kid has had it in for her since Stupid Smelly Bus, aka book one, when she got locked in the school on her first day of kindergarten. [Seriously, read these to kids. Or by yourself. They’re fun and don’t require brain power.]

Books I Didn’t Finish:

Goodreads calls these “Currently Reading” even if I am not reading them very currently.

  • Flight to Heaven | Dale Black. Guy is the lone survivor of a plane crash, dies and is resuscitated. Legitimately, I got bored and quit reading at the “then I went to heaven” part. (It was $4 at Safeway.)
  • Boost: Create Good Habits Using Psychology and Technology | Max Ogles. Sort of interesting but nothing much I don’t already know/do. Why it’s only 40% done.
  • You Mean I’m Not Lazy, Stupid or Crazy?! A Self-Help Book for Adults with Attention Deficit Disorder | Kate Kelly and Peggy Ramundo. What do you mean someone with ADHD didn’t finish a book about ADHD?! Wow. I tried. A bunch. TL;DR.
  • The Art of Asking; or, How I Learned to Stop Worrying and Let People Help | Amanda Palmer. This probably got abandoned for the same reason The Happiness Project did.
  • We Need To Talk About Kevin | Lionel Shriver. I know I started this book but my goodreads progress is 0%.
  • Memoirs of an Addicted Brain: A Neuroscientist Examines his Former Life on Drugs | Marc Lewis. 12% done. I probably got bored?
  • The Psychopath Whisperer: The Science of Those Without Conscience | Kent A. Kiehl. This one was super interesting, except I think I ran out of time to read it before my time with the library eBook was done.
  • The Art of Non-Conformity. I’m sure this has been here for over a year.
  • I’m Only Being Honest | Jeremy Kyle. For a guy who’s an interesting host of a daytime TV drama where he tries to solve people’s problems in the UK (ie. lie detectors, paternity tests, other argument moderation), his book is pretty dry.
  • Growing Up Muslim: Understanding the Beliefs and Practices of Islam | Sumbul Ali-Karamali. Great, great book, but I started it on the way home from Minneapolis and then stopped reading.
…Maybe next year I’ll aim to read 40 books, not 75… Oh well, at least I read something, right?

Bullshit. I wish I could give this no stars. It’s like reading a list that primarily consists of unscientific “data”. Don’t waste your time if you’re really dealing with ADHD and/or are trying to become more wholly balanced while keeping science, including psychology, as your focus!

EDIT: the list only takes up the first 10 pages, but one should always become wary when there are no citations within a nonfiction work. As a person living with ADHD, every part of me that has struggled when those around me found tasks easy, screams against the claims that ADHD is a result of things I am doing wrong and that ADHD is not real: ADHD IS REAL