I’ve written before about the massive impact that services like Bookshare and the Centre for Equitable Library Access (CELA) have had on my ability to enjoy reading longer or more complex books given my learning issues. I think what happened before is that my visual processing/comprehension abilities got outpaced by the books I wanted to read, thus leaving what I was truly able to tackle limited. Fortunately, switching to consuming books mainly by audio has truly changed things for me. At the rate I’m going, I’m going to crush my reading goal of 115 books this year, having read 15 in January alone! Except, two of them were sort-of “cheaters” because they were really short reads I’d acquired from Bookshare near the end of 2018 for “just in case” purposes. But I mean, a book is a book!

Here’s what I read in January 2019. (And yes, I’m still on occasion typing 2018!)

  • The Girl with the Broken Heart – Lurlene McDaniel Far less sappy than the title sounds, this is actually about a girl with a heart problem. But also about love because that is what Lurlene McDaniel does, basically. Teen/YA.
  • Steal Like an Artist: 10 Things Nobody Told You About Being Creative – Austin Kleon. Super short, I think this took 45 minutes to read. Probably one I should read on a regular basis until I commit it to memory. Also, I just read the first two lines of this review by a dude named Peter and I think he’s spot on.
  • The Deepest Secret – Carla Buckley. This one had enough twists I just wanted to keep going. And then [semi-spoiler] it just sort of ended. I have so many questions but I don’t know if I have enough questions for a sequel, if that makes sense.
  • Dancing with Dementia: My Story of Living Positively with Dementia – Christine Bryden. Like any memoir of this nature, it was captivating but also representative of many best-case scenarios.  Super interesting, however, and captures a form of (non-Alzheimer) dementia not as readily understood by most.
  • Meant to Be: The True Story of a Son Who Discovers He is His Mother’s Biggest Secret – Walter Anderson. You know when people discover they’re adopted after doing an online DNA test or whatever? This book was like that except without the DNA test.
  • A Life that Matters: The Legacy of Terri Schiavo — A Lesson for Us All – Mary Schindler. At the end of 2018, I read “the other book” about Terri Schiavo by Mark Fuhrman, “Silent Witness”. In 2005 when the most urgent parts of this case were unfolding, I was in Orlando—at 13 years old, I didn’t understand but the urgency of Terri’s story always stuck with me. This book was written by her mother, and I’d still be interested in reading an account by her husband Michael Schiavo, from the “other side”. I ranked both this and Silent Witness 3/5, though I experienced a much greater cognitive dissonance with the inability to “let go” in Schindler’s book given Terri was not truly Terri anymore. (I tried not to let my opposing political views play into my rating, but it was hard.)
  • Killer on the Road: Violence and the American Interstate – Ginger Strand. After the construction of the US Interstate Highway System, murder rates began to shoot up across America. I started this December 30 but finished it on January 7 with quite the break in the middle—I think the styling initially made it difficult but I got through the last 35% really quickly so maybe it was just me.
  • Unhinged: An Insider’s Account of the Trump White House – Omarosa Manigault Newman. Yes, I finally read the Omarosa book. I still don’t think I know my thoughts on it.
  • Between a Rock and a Hard Place – Aron Ralston. This is one of those books where you know how it ends but you have to still find out how it happens. This is the one where an experienced outdoorsman gets his arm caught beneath a boulder and has to decide how to free himself, ultimately cutting off his own arm and somehow living to write a book about it.
  • Al Franken, Giant of the Senate – Al Franken. Despite that Al Franken is no longer a Senator, I decided to read this memoir. It was quite funny at times but also was sort of trying too hard, though I think that goes with the “award-winning comedian who decided to run for office and then discovered why award-winning comedians tend not to do that” territory. 
  • Tragedy in the Commons: Former Members of Parliament Speak Out About Canada’s Failing Democracy – Alison Loat, Michael MacMillan. I’m not sure I agree with the title, but I did find this an interesting read (with some familiar names). The best part of this, to me, was learning more about the dynamics in the House of Commons. (I’ve since started reading “Procedure in the Canadian House of Commons” which is not quite as dry as one might think).
  • Raven Rock: The Story of the U.S. Government’s Secret Plan to Safe Itself — While the Rest of us Die – Garrett M. Graff. This book was fascinating in a terrifying sort of way, describing the secret underground facilities for saving the lives of government employees and the inner workings of an alternate government should a nuclear bomb hit Cold War America. (Also, I learned there are/were similar secret underground bunkers here in Canada, too.) 
  • Private: Bradley Manning, WikiLeaks, and the Biggest Exposure of Official Secrets in American History – Denver Nicks. In 2010 in a sociology class we had a massive discussion about WikiLeaks that continued throughout the 6-month term following the Collateral Murder video release. Since then, like many, I’ve been captivated by the whole WikiLeaks story. (However, while this was published in 2012, before Chelsea Manning’s transition, I spent the whole book “correcting” these things in my head, though I realize contextually this would have been challenging.)
  • The Most Dangerous Man in the World: The Explosive True Story of Julian Assange and the Lies Cover-ups and Conspiracies He Exposed – Andrew Fowler. Continuing on the WikiLeaks train, this book was far less memorable than the one focused on Manning. It was honestly a bit boring, sadly.
  • You’re Welcome, Universe – Whitney Gardner. I was really pleased with this book’s ability to capture disability while making the character actually, you know, have other character traits than being d/Deaf. Julia is kicked out of the School for the Deaf for graffiti to help her friend, and must find her way in a mainstream school—this book has a lot of nuanced plot aspects without being too unrealistic. I actually gave it 5/5. Teen/YA.

15 down, 100 to go. 
What are you reading? 

(Hello blog, it’s been forever.)

Hello, 2019. 

I’m not into resolutions, as we’ve probably discussed before. Or maybe we haven’t, because I haven’t written anything here since March, apparently. Either way, I’ve written a lot about goal-setting elsewhere, so while I know how to set goals, I’m not into planning to tackle things which I’ll never accomplish just because of a truly arbitrary date known as January 1. Let’s be honest, I’ll spend the first 4 months of the year turning the 8 into a 9 when writing 2019. 

That doesn’t mean I’m going into 2019 unfocused though. (Well, I mean, I presume I will remain unfocused.) After ringing in the new year with The Trews (preceded by The Treble and Attica Riots, which happened after a Moose hockey game—so yes, an overall kickass New Year’s Eve), at 1:21 AM I threw a note down in my phone.

Bullet points for 2019:

  • Blog more (personally)
  • See more live bands
  • Travel for fun
  • Read interesting shit
  • Embrace awesome moments.

That’s it. And that’s enough of a plan; I can make the rest later. Because “Who says it has to be the new year to start a new year?” 

As such, I hope my next post here doesn’t start with “Hello blog, it’s been forever”. That I keep up my excellent start to this year seeing more bands play live. That I do as I did last year and travel more for fun, not “just” for conferences (though hopefully I do that too!)—last year was Montreal with Dia, Orlando with my parents, the Holiday From Real Roadtrip from Palo Alto to LA with Ryan, and to Penticton, BC to see Bryan and David (thanks to Air Canada for stranding me in Toronto and then giving me a flight credit for that last one!). Hopefully I tell those stories here, in keeping with point number one. The last two are easier: I feel my reading materials diversified somewhat last year, thanks to Bookshare mostly—I mean, that doesn’t mean I didn’t just start reading a lot of true crime, but hey, that’s a departure from mainly pure YA. And finally, embracing awesome moments—whether that’s just in my head, via mindfulness, or chronicling them somewhere, too.

We’re off to a strong start 2019. Let’s keep it going. Stories, music, friends, family… and all the other good things.

Five years ago today I was inconclusively “diagnosed” with ADHD: my testing couldn’t fully diagnose ADHD, though did pinpoint a host of other learning issues and quirks about my brain, but they also couldn’t fully exclude the possibility of an ADHD diagnosis. That discussion marked a closure of sorts: gave me answers, and affirmed the fact that no, I wasn’t dumb, and I was in fact trying as hard as I could—my brain just has wiring that’s a bit different.

Over the last five years I’ve navigated what that means—and I’ll probably spend the rest of my life figuring it out. I’ve embraced that I “see life differently”. 

Embracing ADHD though, doesn’t mean I’ve stopped questioning what might have been different had I been diagnosed with ADHD and learning issues earlier—unfortunately. Perhaps one day.

i’ve got scars i’m willing to show you.
you had heart that i’ll never see
she had answers to all the wrong questions.
it’s funny, these answers are all that i need.

caldecott tunnel, something corporate

From twenty-one to twenty-six, things have changed a lot in those five years since my diagnosis—many, if not most, for good. I’ve written before about wanting back certain elements of myself from certain points in my life—coincidentally, today, I feel I might be closer to that. Whether a method of procrastination or of opportunity, I danced today for the first time in ages. I paused once in that 34:40.61 span of time to make a note in my journal—another activity, like exercise, I did much more frequently in 2011-2013 than I do now, and one I am obviously better off for doing—both in general and specifically for my ADHD.

During that time when I was flailing around “dancing” (because I can’t dance, and I don’t care, ‘cause it feels good), I also again remembered it was my ADHDaversary, and reflected on that, too. How I’m still the same but, because of the knowledge packaged in a diagnosis, so different at the same time.

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When busing back and forth from assessment appointments, I listened to a lot of Something Corporate, and found specific relevance in Caldecott Tunnel. Mostly for this one line in the midst of the process—and for the one above after the fact.

we end up regretting the things we don’t try.

caldecott tunnel, something corporate

Here I am, five years later. Appreciative of and still wanting everything I know now, but also wanting elements of my twenty-one-year-old-self—who was figuring shit out much the same as I am now.

And knowing somehow, someday I’ll get there—or a different version of here. And will continue to embrace the good of ADHD… and work on doing better at embracing the moments I hate my ADHD, seeing the not-so-good for what it is and working with it. In the meantime, I’ll enjoy the journey—because let’s be honest, an easily distracted and differently thinking mind has to be a lot more interesting to live with than a neurotypical one. Not that I will know that world, and nor do I want to. 

If I had a normal brain I wouldn’t be me, after all. And being me has been a pretty wild ride so far.

I think the added impulsivity helps with that. 😉

 

I’ve got a lot of amazing allies who have been my biggest supporters through the earliest days of questions and all of the days since I got the answer of ADHD. Jay – as always, without you I am unsure I’d have persisted in accessing the assessment—thank you for all your support finding resources early on, and in the last five years. Seriously not sure where I’d be without you. Tash – for throwing e-mails back and forth in all phases of the process. and sharing your own adult ADHD/ASD journey with me so candidly; you pushed me to learn more about myself. The Smart Girls with ADHD admins—Beth, for creating SGwADHD, Nikki, Liz, Nathalie and Matti. Rob, Theresa, and everyone else I’ve connected with online. Thanks for helping me to be more awesome.

I’ve probably missed some of you. If you’re reading this, well, you likely deserve to be on this list too. Thanks for being a part of my story.

Usually, I embrace ADHD. Last night was not one of those nights. I posted this on Instagram last night, and figured I would post it here too. Because ADHD is not just a punchline; it’s not a joke. ADHD is more than distractibility, more than “hyperactivity”, more than forgetfulness, more than what people “see”, and way more than people perceive it to be. Way more than many people can even try to understand. It is real.

—–

 

A post shared by kerri (@kerriontheprairies) onFeb 20, 2018 at 10:34pm PST

Most of the time I embrace #ADHD. Tonight, I hate it. 
I hate how it makes literally everything more effort. Everything. I hate how it sometimes makes me a person I don’t want to be. It’s not an excuse, but it’s also not my fault. I hate how it’s a series of paradoxes. I hate what it does to my emotions. I hate how I’ve been trying to calm down from something stupid for over an hour now, after two other hours stuck. I hate how it, and in turn I, manage to ruin an otherwise great day. I hate how it doesn’t make sense and how it’s so hard to explain to others. 
Yes this is real. And it sucks. And on nights like tonight it’s hard to embrace my own #neurodiversity.

I hope tomorrow I get my ground back. Tonight, I hate having ADHD. 
Thanks to the amazing people who reached out on twitter. You have no idea how much I needed to know you’re in my corner. 💜 (via The Mighty/ADDitude)

—–

Usually, I don’t get down on my ADHD. Last night was not one of those nights. 
And I’m still “feeling it” this morning pretty hard, from a three hour experience of over-emotion and over-thinking, and all those things. Compounded by the wrong kind of hyperfocus. The hardcore emotional effects of ADHD are not well enough explored, and they are still hard to navigate.

some will learn, many do
cover up or spread it out
turn around, had enough,
pick and choose or pass it on.
buying in, heading for
suffer now or suffer then
it’s bad enough
, i want the fear,
need the fear, cause he’s alone
fear has become, cause he’s alone

well if they’re making it,
then they’re pushing it,
they’re leading us along
the hassle of all the screaming fits
the panic makes remorse.

after all, what’s the point,
course levitation is possible
if you’re a fly, achieved and gone
there’s time for this and so much more
it’s typical, create a world
a special place of my design
to never cope, or never care
just use the key cause he’s alone
fear has become, ‘cause he’s alone

over and over a slave became
over and over a slave became

well if they’re making it
then they’re pushing it
and they’re leading us along
the hassle of all the screaming fits
that panic held before

well if they’re making it
then they’re pushing it
and they’re leading us along
like a cancer caused
all the screaming fits
and their panic makes remorse

leading us along (vitamin r) // chevelle 

For over two years now, I’ve navigated an off-and-on, recurrent (or remitting?) knee injury. I’ve gone through rolls of CVS and Synergy brand kinesiotape (and a half roll of KT tape which I swear does not adhere as well and has since been relegated to other tasks). I’ve seen a sport medicine physician. I’ve iced and compressed and elevated. I haven’t gone to physiotherapy because I lack insurance, though that sort of rehabilitation is likely in the works. This has brought me to trialling the SmartCrutch…

Photo on 2018-01-09 at 11.26 PM #2

…but more on that in a moment!

The technical-non-technical background on my knee

If you don’t care about the suspected mechanics of my injury and want to get to the SmartCrutch jump ahead to the next header. 

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Here’s a screenshot of my x-rays from a couple years ago which I posted on Instagram, recently (somewhat poorly) labeled, and sent to a friend. 

It seems the issue is my patella is being pulled medially (toward the “inside” of my leg), and causing some sort of tracking-type problem. Likely, this is because my legs are different lengths—yes, many people’s are, but unlike many people’s, mine are actually clinically significant, to the tune of about 68 mm. This stems from my right hip being super screwed up, also known as severe hip dysplasia. I have an orthotic but because of muscle tension in my quads preventing my hip from fully extending, combined with the other stuff, I still limp.  

The theory here is the malalignment has messed with my quads, has pulled my patella over to a slight angle, and this results in a degree of pain and the feeling like it’s going to give out. My limb length discrepancy is visually apparent (limp), and these symptoms further exaggerate my limp to one that is not-normal-for-me. Doctor, x-rays, then the assessment became that this is all due to my biomechanics and it didn’t seem to my doc that exercises would help this, at least not then. A year and a half ago or so, there was nothing he could really do (especially given my lack of insurance coverage). My pain isn’t terribly severe, thankfully, but feeling like I’m going to possibly fall over combined with that and my general imbalance is a tad disconcerting. Walking longer distances, as well as snow and ice suck (I don’t encounter that many sandy beaches which might also suck after a couple dozen feet). The injury actually started when I was working at tennis clubs, weaving around uneven back areas of courts. So, uneven things remain a problem: cobblestones in Zurich, snow here in Winnipeg, as well as long distance walking, and abrupt stops. 

It was a mostly annoying problem until one night about six weeks ago when, after a fair bit of standing/walking, the only way I could really move about my kitchen was by holding onto the counter. Awkward. 

The question of crutches…

Well over a year ago, a friend asked if I’d considered using crutches. I had, sort of, but related to my hip dysplasia (as they both stem from a staph infection resulting in multifocal osteomyelitis as a neonate, AKA a bone infection affecting multiple joints), I also cannot fully straighten my right arm. This caused significant issues when I had knee surgery (on the other knee) 14 years ago and had to use axillary crutches. My orthopaedic surgeon said forearm crutches might help, but other mobility aids were more easily accessible—I eventually used axillary crutches for a very short period post-surgery when I was semi-weight bearing. Thus, axillary crutches still didn’t seem a great option. A year following the injury, I did check out options and discovered the Smart Crutch, but wasn’t ready to make the mental—and financial—investment into crutches. 

Well, finding myself leaning on my kitchen counter to stabalize myself changed my mind pretty quickly. Within 12 hours of my e-mail to Smart Crutch that night, Kirsten at Smart Mobility had replied, and agreed to send me a pair of crutches for review. (It turns out Kirsten is also trying to find the “right fit” in a Canadian distributor, so while being Canadian is always a win, it was definitely a win here.)

Enter disclosure: I didn’t pay for these, but regardless, promise a thorough and honest review. Because that’s what we agreed on. 🙂 (Formal disclosure at the end of the post.)

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Getting to know SmartCrutch

I contacted Kirsten on Monday night, we discussed by e-mail Tuesday/Wednesday, connected by phone on Thursday, and she shipped the crutches out same-day from Colorado. I was impressed. FedEx had them in my hands in Manitoba on Monday, well before 5 PM as promised. Again—impressed! 

The uniqueness of SmartCrutch is in their adjustability. For me, that’s key. SmartCrutch transitions between a forearm crutch to a platform crutch. As my right elbow does not fully extend (and my wrist also has limited extension, though not as significantly), being able to adjust and carry weight across my full forearm, I thought, would be of significant benefit to me.

SmartCrutches are are a bit of a custom fit, with more customizations out of the box. They have three sizes currently available (with a fourth on the way!). While the upcoming size, Kirsten lamented after I provided her my measurements and we chatted by phone, was likely more appropriate to people my size, we settled on the Petite-Midi crutch. 

Needless to say, in the pre-crutches and starting out phase I was curious: will the SmartCrutch(es) help manage my knee issue? Will it help relieving the lower back pressure I often get when walking and mostly consider normal now? (Oops.) Will there be things I never realized were totally off that are helped? Will I even notice a difference? And the pessimist: Will they just be a pain in the ass? Is the way things are now just the way things are and will be?

And… so began my SmartCrutch trial.

Unboxing SmartCrutch.

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How about a break from this for a video, yeah?
Because, unboxing videos! Yay!

Also apologies for the video quality. I should learn not to record using PhotoBooth and why I didn’t plug in my good microphone which was right beside me is a mystery.

Beginning the SmartCrutch Trial

When I wrote this part, I was 4 weeks into using the SmartCrutch. Within an hour of unboxing, I headed out the door with my SmartCrutches for a board meeting, which was almost rescheduled due to snow/bad weather (which says a lot in Winnipeg). A fresh layer of powder on the sidewalks, I trekked out to the bus stop, a ten minute walk away. 

My first SmartCrutch story is of a “problem”-not-problem. After leaving home, I heard this strange sound. Living near train tracks, I didn’t think much of it. As I continued on, it followed me. Not even halfway to the bus, I realized the odd whistling sound was the wind blowing through the adjustment holes in the crutches—similar to blowing over the top of a pop bottle, except times the four open holes. Quite musical, but not ideal. 😉

Easy fix: Once I got home, I stuck some purple glitter washi-tape over the open holes. Problem solved: no more whistling (though an amusing story!).

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The next issue I came across was more of a fit issue. As mentioned, Kirsten mentioned this when we chatted, that I am somewhat between SmartCrutch sizes. One thing I LOVED about Kirsten from the get-go was her honesty. My forearm measurement is “between” cuff sizes—a little short for the petite/midi crutch. Kirsten mentioned that this could be a problem, but likely workable, and sent the crutches out. She also suggested some great workarounds, and super prompt replies to my e-mail questions. (Again, beyond impressed with her customer service!). One such workaround was modifying the angle of the crutch to closer to 90*. Another was to “close up” the cuff so the opening was essentially non-existent—I accomplished the latter in a few different ways. More on that in a bit.

And before it gets pointed out, yes, I realize the cuff opening is for safety so that if I fall the crutch falls off, but given the crutches make me more stable, I’m willing to take this risk.

SmartCrutch: 4 Weeks Later 

I would say that I continue to grab a SmartCrutch (sometimes two) about 90% of the time I leave the house (and 97% of the time I’m walking farther than say around a small store). I love that they’re small-ish even fully set up so that I can tuck them in between my knees on the bus, keep my backpack on my lap, and only take up my designated one seat. 

In the past few weeks I’ve also “styled my crutches”, both with fun contact paper and by closing the cuff as Kirsten had suggested was helpful, I attempted this a few different ways, starting with shoelaces and a combo of duct tape and KT tape, moving on to a thick bright green ribbon (hey, it was Christmas!).

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I’m still working on other ways to keep the cuffs closed, as the above methods were decent but not terribly long lasting—I just tried Command strips for picture hanging, too, and the velcro-like closure didn’t stay securely closed to the force of the cuff opening trying to separate. So, back to the drawing board!

This was a dual solution, resulting in less forearm friction and also solved the issue I was having of the crutches almost falling off when I reached up for something with them on, AKA every time I went shopping, only saved by the fact I was wearing a puffy jacket.

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The pink chevron contact paper is a mod I am loving. I still have to get the right crutch finished up, but it’s a two person job! Pretty template + idea from Jennifer Peacock-Smith (Facebook group for template here).

I’ve not experienced any arm pain while using the SmartCrutch, although of course some muscle soreness is to be expected (and experienced!). As well, I haven’t noted any lower back tightness/discomfort as I’d often get pre-smart crutch when walking faster than a saunter for more than 10-15 minutes some days. Win!

Another thing about being a person who generally limps and has their whole life, random strangers always seem to need to ask if I’ve injured myself. Usually, the answer was no. Even post-injury, the answer was no, since I limped anyways. 25 years in to my life, I finally got annoyed with these people. Particularly one totally random man when I was just trying to walk across a parking lot with my earphones in and I had to take my earphones out to hear “What happened to your leg?”, and then I just said “Sorry, I’m busy.” and booked it out of there. 

Guess what? Since wandering the world with a crutch or two, no randoms have asked. It’s been quite refreshing.

As well, I find the SmartCrutch is easy to stow in a variety of locations beyond the bus. I’ve yet to take them on a plane (coming in March!), but thanks to their design, I’m set at archery and while pushing a shopping cart! 

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Final thoughts on SmartCrutch

Bottom line here: the SmartCrutch is comfy. Seriously, that layer of foam lining the bottom of the platform is delightful, and comfy whether you’re wearing long sleeves, a jacket, or no sleeves. The adjustability has been crucial for me, and I find the ability to adjust, adjust, and adjust again has been so helpful—you don’t have to get a measurement right the first time, because you can keep tweaking it until you get what works for you. And if you have weird biomechanics like me, that’s super helpful. 

I find I have generally less knee pain at home when I use my SmartCrutch. Actually, today I used my SmartCrutch inside the house for the first time after coaching without it, and my right quads were just feeling unstable and not stellar: it was so nice to not have to repeat that situation from a month ago using my counter to navigate my kitchen—I grabbed a SmartCrutch instead!

As the hashtag goes… #ilovemysmartcrutch!

 

Disclosure: I received a pair of SmartCrutches from Smart Mobility, Inc. in exchange for an honest review. I was not required to write favourably, and I have done my best to give my honest opinions. (Of course, bias does come with free stuff. It’s sort of in the box. ;))