Sam and I sitting on the floor practicing [my] shot put form.Sam and I met one day in the Accessibility Resource Centre last Winter (because it took until my fifth year of university to identify as a student with a disability, and then make a bunch of friends in the ARC). Not long later, a shot put lesson possibly happened on the floor one afternoon [see picture]. Another day, we went to the gym, where (God knows why) Sam had me chucking a medicine ball at him repeatedly while I did bosu supermans and yes 97% of these throws non-intentionally hit him in the man parts. I’m not even trying to make myself sound nice with the non-intentionality because seriously, I am not good at accuracy. Also one day we explored Toys R Us, then a thrift store, to find a stuffed pig to make him fly.

Like so:

Anyways, there’s my back story [stories?] about Sam.

Now it’s his turn to tell you his own story–many aspects which he and I have parallel views on even if we didn’t know it yet. Thanks, Sam!

———-

I am Sam. Sam I am – without the joys of green eggs and ham.

I was born in 1990 with Myelomeningocele – commonly referred to as Spina Bifida. Medically speaking, it is a defect in my spine that has rendered my legs rather useless, and has left me confined to a wheelchair. However, thanks to my parents and my upbringing, my wheelchair was rather invisible to me until Junior High School when social classes become more important.

While my preamble makes disability sound like a horrible thing, it actually has taught me some important life lessons that simply cannot be taught by another person. These lessons include the power of sport, the importance of community, the strength of advocacy, and patience.

The first lesson is advocacy. This lesson is two-fold; one for knowing how to advocate for your person and the other is to advocate for a better life. While they seem all the same, the later is to advocate for a society that benefits all. Advocacy and patience goes hand in hand because while you know what’s needed to change for full inclusion of all members of society, you consciously know it isn’t going to happen today, or tomorrow, or this year. It’s hard to advocate for change when you can’t see it, but it remains an important feat as change wouldn’t occur without those efforts. The advocacy for one’s person though is a more gratifying form, as results are generally seen and noticeable. While becoming a product of Child and Family Services in my late teen years – I learn this lesson rather quickly. There, a system, which is designed for my protection, was attempting to charge me, a paraplegic from the waist down, with assault for kicking someone. Clearly, I couldn’t let this pass by.

Patience is another thing that I’ve learned, and although a lot of it is learned through advocating for better accessibility, the other aspects in life that have required it is in health and in love. Medically, things don’t always go according to plan – and usually, it is just out of your control. Love is the same way. It takes a special person to accept a disability and to love the individual for who they are. Society is too caught up with the media-influenced attributes and preference isn’t given to the person for who they are. And although this special person comes along, you still need to be patient with them as it takes time for them to learn and to understand – and that time we generally undervalue.

Sport is another huge part as it gives a person with a disability an opportunity to tangibly achieve something that is comparative to their able-bodied counterparts. Athleticism is a measurable attribute, however, the comradery that comes with disabled sport is equally important. Here, there is a community that is entrenched, and willing to support you in many ways. You are now one in the same, and that is incredibly powerful.

We often look at the negatives of disability – the what we can’t do, or the what ifs, or the what it could’ve been. However, looking through a lens of how disability can shape an individual is an intriguing perspective. Here, lessons of love, understanding, caring, comradery, patience, can embody these people. However, the comprehensive understanding of these lessons doesn’t make an individual exceptional – but instead, just simply shows the desire to have a good life. Disabled or not, we embody and share those desires. I share these lessons because disability isn’t just negative – it has become a part of my identity. Without my disability, I am not sure if I would be as humble as I am today, or if I would be as accepting of people who face comparable adversities.

So when you see Sam I Am wheeling down the street, pushing with all his might with groceries in tow – just remember, they are just as heavy sitting down as they are standing up.

———-

Sam is a business administration student about to complete his final year in his degree. Sam can occasionally be found singing and playing the piano in front of downtown Winnipeg establishments while waiting for the bus [except not now because they removed most of them. The pianos, I mean], but more often right now you’ll find him with a tennis racket. Sam is a multi-sport athlete (it’s a long list, but let’s just say he’s working at getting me out for wheelchair tennis, basketball and para-athletics. And I’m sure sledge hockey when the city freezes over again), and is active in promoting wheelchair sport to the community.

You can connect with Sam on Twitter at @samunrau–and, Sam has just started a blog so new that nothing is really on there, so you should probably go Roll Along With Sam–even if a suspenseful ride at present!

i crossed a line five years in the making
that the biggest eraser can’t clear.

–this is the sweetest little song, butch walker. 

 
 Photo credit to Amber

Five years, and far more stories than I would have ever imagined.
Today, I close this chapter in the story and move on to the next one, with the storyline embedded deep within me.
 
These five years are worth far more than a piece of paper and these pictures. The last five years are the story, the experiences, the process. And this day, this piece of paper may symbolize that I can put the things I know onto papers and into practice, but only to an extent.
The degree, Bachelor of Physical and Health Education, implies much about what I have learned outside of myself: in no way can those six words even begin to indicate what I learned inside myself and what I—and those around me sharing this story–changed inside myself. And that the change inside me is far more crucial to my ability to connect with others than most things I could ever be assessed on.
 
The last five years are not about this moment: they are about the collection moments that lead me here.

connect the dots there is a picture in these lines
my favourite parts of life are in the nights of better sleep i never find.
but even if i don’t decide to chase my dreams, i won’t throw them away
[…] i won’t forget everything i wen through to get here
but i haven’t decided if here is quite where i belong.
—where i belong, farewell fighter
 
 
They are about the process.
 
 
 
The people.
 
 
 
 
 
Photo credit to Becki
 
 
 
The story.
 
 
And what’s ahead.
 
Note: I’ll be updating this post with more pictures/quotes over the next few days… Check back :].

and i scratched these words into a black notebook…

last straw, jack’s mannequin

There are so many unexpected ironies included in those lyrics with what was to come—foreshadowing.
i’m one year older now since the last time I saw you in case you wanna know, i’m about to say what i’m up to.
first of all i’m a sluggard, moving slow in a clumsy way
some peace of mind is what i want, but that will be the day.
i’ve been going without fault for so long, and this must end
running round in circles, i’ve been so far from myself
searching for the energy, and the time to make a change
to make a change in my life, instead of watching it pass by
do something now while i’m alive
 
i’m twenty-two, don’t know what i’m supposed to do
or how to be, to get some more out of me
i’m twenty-two, so far away from all my dreams
i’m twenty-two, twenty-two–feeling blue
 
[…]
afraid that i will be weak forever
i can’t stay in this shape any longer
my life’s just another cliche
 
twenty-two, millencolin
As I did of 2013 when 2014 started, I refuse to recap my twenty-second year: It was important, it changed me, but that change did not occur through circumstances I chose. It was important to me—it still is important to me—to share those stories, to be transparent, for a variety of reasons. Among the most important, though, can be summarized concisely in my friend Jay’s words: “We cannot control our circumstances, only our responses to them”.

i’m keeping quiet until the phone stops ringing  lately it’s hard to disconnect, i just want something real i’ll find my words if i can just stop thinking the room is spinning, i have got no choice be patient, i am getting to the point… 

spinning, jack’s mannequin

I grew, I came out on top with a few more scars inside me.
you watched that poor girl waste the best years of her life and i’ll be damned if i am going out i will not go out that way.
last straw, jack’s mannequin.
I’m alive and determined to make this count.

i can’t remember when the earth turned slowly so i just waited with the lights turned out again i lost my place, but i can’t stop this story 

Tomorrow, I turn twenty-three.
i keep forgetting when the earth turned slowly so i just waited till the lights come on again i lost my place but i can’t stop this story i found my way, but until then i’m only spinning 
spinning, jack’s mannequin.

A year ago today

I surfaced at work after being gone for over a week because I couldn’t move. I’d been getting sicker and sicker for months and I couldn’t keep up anymore.

I went back to school to start Spring term, and right before class got a call from my doctor’s office telling me I needed to go to the ER because my hemoglobin was 54.

Today marks a year since my first blood transfusion of 2013—three units from amazing donors that kept me alive, to be followed by another seven in the next four months.

it’s been a bombs and guns and fire kind of season
oh, i need a reason for all of my bleeding tonight.
i’m going to break it out, i’m going to make a scene if i’m right

Day before I got sent to the ER. Note that there’s basically no colour in my face/lips. [I felt like I had energy, but in reality my body probably had just adjusted to being super depleted of hemoglobin that I was able to sit up again.]

A year ago yesterday.

 

World Asthma Day 2013 [May 7th] 365 days ago today.

About 36 hours later, after three units of blood and a bunch of saline.

(And the friggen Lasix. I still don’t understand this combination of saline and Lasix.)

Yesterday.

let the revival rattle me
and open my eyes
it’s so good.
revival, the rocket summer

And today—365 days later.

World Asthma Day 2014. Wearing the same t-shirt I got my mom to bring to the hospital before heading to work early in the morning.

Donald, Mike, Sam and I gave out over a hundred Asthma Society of Canada resources for World Asthma Day.

…Then went to Wal-Mart with the intention of playing Marco Polo. Because that’s badass, right?

I thought about where I was this time last year today—purposefully at some times, fleetingly at others.

Thankful that it won’t be every year that these two days are the same day so I can reflect on each for its own reason. Thankful for the people who choose to spend their time with me—the people who stick by me.

Simply: thankful I’m still alive.

I have too much to write that requires a lot of thought, and not enough time to write it all out. I’m rounding up guest bloggers to help me out, but while that solidifies, here’s a new series called Short Stories.

Short Stories will be quick anecdotes from my life in a given moment. No greater purpose, just random moments that may [or may not] be of interest.


If you make a mistake, press star

As I managed to break online prescription refills from Shoppers Drug Mart, I use the automated phone service instead.

(Yes, don’t ask me how I managed to break the online service. And the app. Or why I can get Concerta cheaper at Target.)

I have three medications on my counter needing to be refilled relatively soon: Qvar, Atrovent and Concerta, all neatly labeled with their respective “7 digit Rx number located in the left hand corner of your prescription label”.

I also have a pack of hormone pills with 3 active pills remaining [because I back-to-back those F’ers—since I don’t want to be on them but am for medical reasons, obviously I will use this to my advantage], but no respective label. I “press 1” as I walk to the kitchen to find a receipt with my history to grab the number. Punch it in.

“To request another refill, press 1. To hear when your refill will be ready and confirm your order, press 2.”

Press 1.

“Please enter the 7 digit Rx number located in the left [I DID NOT NEED TO PRESS 1!!!]. If you make a mistake, press star.”

I am pretty sure pressing star will not help me.

Glance down, next on the list– “Zenhale 200/5 – Ref: 1”: Input number.

Press 2.

 

I don’t need the Zenhale for 27 days. But hey, at least when they tell me it’ll take a week to get in despite promising they’d stock it, I won’t have to revert back to my backup stash of Symbicort I have now for this purpose.

It makes sense if you have chronic disease!