Back in February, I summarized the 2015 soundtrack so far. In reality, I didn’t add another new song until May—probably because other than travel, March was much a void, and in April I found more work and felt more of a semblance of normalcy—even just saying you have proper work plays into that—and as I’ll get into later, the stories for me happen in transition. I headed to Toronto at the end of April for goalball nationals, my first competitive coaching gig, and then returned in May for Clearing the Air. Then, it was off to Denver

My Disease – A Skylit Drive.

awaken to the eyes of glazed humor
the haze in my somber eyes it burns so cold,
the things you wish you could know

What I thought on those return flights from Toronto and Denver was this: Chronic disease sucks—the community that can arise from it, though, makes it better. If I didn’t have asthma, didn’t candidly share that experience, I’d be a much different person today—for better or worse. And, there’s humour in it that only “sick people” get, and a world that only we understand.

as he enters into the world,
as a ghost
the terror inflicted scrapes your bones
let him hold you close.

[Look… where… over there… fear me]
oh i see what you mean, step too close
see what i see—construct desire
the fine line between disease and what i need

it’s exactly what it seems
the horror i love, the evil that beats inside me:
it’s called my disease.

All of the above: it’s a blessing and a curse. I may have friends and adventures gained from having messed up lungs and other sorts of shenanigans going on in my body, but I still face the reality that everybody with chronic disease does every day. I don’t know what that day will bring, I don’t know what the next hour will bring. Even when my health is stable, there’s still the lurking thought of when will the stability end? It’s not encompassing, but it’s still there. The community of people, the friends I’ve made, makes that tolerable—but even in the good, the amazing, there’s still a kind of evil inside my body that I have to make a commitment everyday to coexist with so that I can continue to own it. A choice so that “evil” does not crawl into my mind and make me more cynical than I already may be somedays, and more importantly, keeps me seeing my circumstance for what it is, rather than what it could be tomorrow. I somehow got a reputation for positivity, and damn it, I’ll keep trying. While everything I chronicle here is the truth, like I said in 2013, there are still “stories I will never tell”, or I will never tell in as much detail as maybe they deserve–there are some stories I’d rather forget—even though I can’t.

The possibility to do good, why the travel opportunities existed to an extent, counterbalances some of that. But it doesn’t make the other stuff suck any less. 
 

Progress – MUTEMATH.

Progress was added to the soundtrack in about July, but really encapsulated April through August well. Work stuff started happening: I got a job with Tennis Manitoba (thanks for the recommendation, Sam!), as well as a more formal respite care provider position

pulling your confidence through
some courage is well overdue
i believe solely in all your promise
why waste a second in doubt
you could be helping out
keeping your head in the clear

I finally felt unstuck for a bit—looking for work is kind of depressing until stuff falls into place. Which can take forever.

[…] every moment of time’s just an answer to find
what you’re here for, what you breathe for
what you wake for, what you bleed for.

Certain things stick with you, no matter what, so every time I hear this song, I think of the above lyric, specifically “[…] just an answer to find […] what you bleed for”, and gently (usually) flash back to the whole situation of most of 2013, and, while maybe I haven’t figured out that whole effing scene, at least I can see how far I’ve come.

everyone’s counting on you
say for yourself what to do
life is a card that you lay down sometimes
to search for the best way of all
is finding the best way to fall
keeping your head in the clear

Sometimes I feel like I don’t know what direction I’m going. I wrote before that I was okay with this—now, I feel like I’m finding the best way to float, not necessarily to fall. Falling means taking risk, at least, means doing something—floating just seems passive. And I’ll admit it: some of the progress has been passive.

every moment of time’s just an answer to find
what you’re here for, what you breathe for
what you wake for, what you bleed for.
what you hope for, what you live for,
what you’re here for, what you breathe for
what you live for,
what you’re here for, what you bleed for
what you live for…

Every minute I’m given is another minute to figure it out; another moment to make a choice to be mindful of even the most passive of things… 

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

On the 12th of each month, I take 12 pictures throughout the day and then blog them. Here are my photos for December 12, 2015.

http://i1.wp.com/farm1.staticflickr.com/757/23392808769_ffb714138d.jpg?resize=375%2C500&ssl=1

12:21 am – bathroom. I regularly empty my pockets while taking my bedtime inhalers.

http://i2.wp.com/farm6.staticflickr.com/5794/23132582694_e5cef89c99.jpg?resize=375%2C500&ssl=1

9:26 am – bedroom. Good morning, Movie Mike! He and my earphones slid under the bed overnight, despite that the cupcake tries to protect him.

http://i0.wp.com/farm1.staticflickr.com/699/23132583444_9eab624e62.jpg?resize=375%2C500&ssl=1

10:50 am – bus. I unintentionally collect these things. I’m going to make a collage one day, I think.

http://i1.wp.com/farm6.staticflickr.com/5811/23678345631_3c99466b80.jpg?resize=375%2C500&ssl=1

1:45 pm – Amber and Darren’s. Happy first birthday, Bria! 

http://i2.wp.com/farm6.staticflickr.com/5714/23734625266_2f8cc91f28.jpg?resize=375%2C500&ssl=1

3:50 pm – bus. Riki borrowed this skateboard like, two years ago (it’s a long story). Now I’m taking it on buses in December. (Also a long story.)

http://i0.wp.com/farm6.staticflickr.com/5678/23392805929_22ccb4915d.jpg?resize=375%2C500&ssl=1

5:09 pm – bus. Yes, I did say I was taking the skateboard, covered in duct tape, on buses, plural.

http://i1.wp.com/farm6.staticflickr.com/5769/23133925563_72cf8bc6f5.jpg?resize=281%2C500&ssl=1

6:29 pm – kitchen. Arise by Chevelle always makes me think of my friend Darren, so I took a screenshot and sent it to him. You can check out his bass cover here (filmed by yours truly :].)

http://i1.wp.com/farm1.staticflickr.com/639/23132577444_a44bbd7b64.jpg?resize=375%2C500&ssl=1

6:59 pm – dining room. Decorated my little Christmas tree, complete with cupcakes and airplanes. I want an airplane tree topper, really, though this penguin will suffice.

http://i0.wp.com/farm6.staticflickr.com/5670/23465046200_7aca52143b.jpg?resize=375%2C500&ssl=1

10:32 pm – bathroom. After nearly 10 years of needing to be fragrance-free, I finally found unscented bubbles. I’m kind of obsessed with them, but they are hard to find—my best friend found these ones for me :).

http://i2.wp.com/farm1.staticflickr.com/588/23734629006_463a171be5.jpg?resize=375%2C500&ssl=1

11:29 pm – kitchen. Not sure why there is a pumpkin in my kitchen. And mostly why it has not been made into pie yet.

http://i1.wp.com/farm6.staticflickr.com/5796/23132582584_b57636954b.jpg?resize=375%2C500&ssl=1

11:30 pm – kitchen. My current netflix obsession – Life Unexpected. [Which I finished on the 13th and am very unsure about the ending.

http://i0.wp.com/farm1.staticflickr.com/720/23133929873_4e18e0a58b.jpg?resize=375%2C500&ssl=1

11:31 pm – kitchen. And, when Netflix breaks… “Whoops, something went wrong…” They got nothing on Google Chrome’s “Oh snap!” error page…