Another post . . . must be homework out there being ignored

Actually there is homework being ignored. I have a lovely stack of library books on forgiveness sitting a foot away. It's okay we'll make up later :)

It's interesting how life brings things into play. For those of you who read on a semi-regular basis (which lately may be more than I post) you may have noticed some wrestling as I try and reconcile the path EDS is taking of late and what this means for me.

However, since that post, I've had three encounters which have shed their own unique perspective on life.

My first encounter came from a complete stranger on one (of many) Facebook group which I frequent. Sometimes it's so helpful to find someone who's been there before you and can speak from experience. It is my great wish one day to actually meet an EDSer in person and get the chance to speak with someone who just "knows." Anywho, I posted about my conflicting feelings over the chair that is coming and as usual someone spoke up. Even though as a counselling student I was familiar with everything he said, there was a comfort from hearing someone who has been there say you are normal, here's what you can expect. As much as our society pushes us to be individuals and unique sometimes there is a distinctly sweet relief from hearing that you are the same.

The second encounter was far less direct. I have an friend from long ago (she used to babysit me so I'll be nice in case she remembers any stories) who is also working through the effects of an incurable illness. Her blog is awesome to read, full of stories about her life and family, practical things she's learned as a mom, as well as her own thoughts and fears about what the future holds. I admire her and what she's accomplished. To see her state that she too is frightened of a condition which is far more certain in its advances is comforting. It's nice to be reminded that everyone can get scared by the uncertainty.

The final encounter I had was in the Post Office. I love small towns, getting the mail takes ten times as long but that's because there's always someone to talk with. Today it was an old friend who also has a chronic condition. Now, this friend is another person I admire. He's got his M.A. and approaches life with such openness, so I told him about the chair. It was interesting to hear him talk about working through the same emotions when he started using his cane but then he asked me a question. Are my fears based in pride?

It's a hard  question but I think a good one. There is loss that comes with using a chair. There are things that will be harder and North America was built for the average person.  But there is also such a weight on people's actions determine their worth, so much focus on our contributions rather than our inherent worth as people. To be afraid of people's reactions is normal. To let that fool guide my behaviour is foolish. The main thing that's changed is now I'll be able to keep up.

So now I just have to figure out how to remember that...

March update

Ouch.

So, I had plans of updating a lot sooner. Good intentions, high hopes, honest ambitions.
But we know where those lead too. Yep, no posts for an entire month. On the flip side I did get four chapters of my fanfiction posted.

Life's been really crazy lately. I'm attempting to take on four classes between January and the wedding for my M.A. which somehow has resulted in crazy busyness but at the same time is strangely exciting. Sometimes I worry about how excited I become at the chance to study things that make others cringe - like suicide and abuse.
However, I've talked to my friends and they assure me I'm fine and that someone needs to be passionate about such things. Seeing as they are occasionally less crazy than Gred and Forge Weasley, I think I'll take their word on it . . . for now.

Another area of life filling up my schedule of late has been wedding planning. Seriously, 19 weeks tomorrow I'm getting married to my best friend :D   Not that I'm excited and counting or anything (insert sarcastic tone here). This means spare time has been filled with dresses, invites, and counselling. Actually that doesn't sound much like spare time. Hmmm, apparently my spare time has run off, maybe it went looking for my sanity, that would be lovely if they found each other and returned.

The last big area that's been taking up my time is EDS. Last week I met with an OT to see if any help could be provided to allow me to regain some independence that wonkiness in the lower body has been limiting of late. The OT was awesome. Asked great bendy questions, looked into anything that could be of use, and has found me a standard manual wheelchair, for free, through a government program.

This is awesome news. Even though I have no desire to become complacent or reliant on the chair it will be nice to go out with friends without being worried over slowing people down or how to do damage control if my hip stops working halfway through the mall. Even something as simple as getting to class. I absolutely adore that my fiancee walks me to class and was embarrassingly relieved when my prof walked me home the day he couldn't and my joints weren't stable enough to ensure a safe trip but having the freedom to choose is exhilarating.

Yet, I still grieve this development.

There is a part of me that is ecstatic to have medicals who believe and are willing to help. The other part of me grieves the changes this means. My school is not overly accessible. While I can get to the building on my own, my movements throughout the building will need planning to make sure I can get there with a chair, the local town isn't much better.

I worry, silly as it may sound, how people will view me when I use the chair. Will people think less of me? I've used chairs before and it drives me up the wall how people assume your IQ drops when your legs aren't working. Now, mind you, I've had some wonderful encounters with seniors but I think that's because they understand what its like.  I don't want people's pity or scorn (though scorn is easier to deal with), I want awareness. I don't want people to assume my value, my person, me has changed just because I need some help.

It's so hard to admit that you need help, to admit that EDS has claimed a victory in this battle. I know, in the end, that this is wise and in the future I will turn this around and use this experience in my battle against EDS for my side but today it's hard. Today, I sit angry and grieving, excited and hopeful, and mostly confused.

Perhaps it's time to go plan some more wedding stuff.

Until next time,

Who's up for a story?

That's right it's story time tonight.

After looking at my calendar I realized that six months tonight is our wedding rehearsal.
Six months tomorrow is the wedding.
Alright, alright, maybe I didn't actually require looking at a calendar to figure out the math.
Being excited is normal, however, and it's kind of weird to be normal for a change. I think its a nice change from the crazy which usually dictates my life:)

Either way, there is six months to live life, plan a wedding, finish some classes, and everything else in between. So much to do, so little time. Actually, that part makes me kind of excited too.

In an effort to take a bit of a rest from the chaos of life at the moment, I thought I'd sit down and, with my fiancee's pre-approval share the tale of our engagement. Plus it gives this mostly tomboy a break from the world of pictures, dresses and other froofery which goes along with wedding planning.

To properly set up the atmosphere for this tale, I take us back to the wondrous land of fall. Back when the air held a slight chill, the ground was freezing, the smell of coffee lingered in the air while we anxiously awaited the often promised yet never seeming to arrive snow.
Actually it was a lot like January is now that I think about it. Is 1:30 am to late for coffee? Right, back to the story.

Anyway, on one quiet night, during my boyfriend's daily visit to say goodnight, he mentioned that an unnamed event would be occurring "eventually."

That was it folks, my entire clue. I mean he went back to playing Assassin's Creed,
 Eventually, possibly the most ambiguous term invented to define time and that's what I was given. Nothing about what it was, no vague time frames, just ten letters and a smile.

Now, for those who know me well, patience is not a virtue I possess in droves nor do I possess an abundance of the ability to let ambiguous unknown's go unanswered.
So, being the good girlfriend I was, I proceeded to ask what eventually was . . .

every day . . .

for six weeks.

Oh, and I do mean every. My fiancee will confirm it.

Yes, I am persistent and tickling may have been involved but, in the end, it was all for naught. He can be just as stubborn and apparently I'm amusing when I can't figure things out.

Turns out, unbeknownst to me, my poor fiancee couldn't have actually told me when eventually was even if he wanted to . Through circumstances beyond his control the ring itself was delayed time and again in a story that bears its own telling (and should he ever write it I'll be sure to link it here).

But, since that part is not mine to tell, let's fast forward a few weeks.

It's now December 22nd and I am not a happy camper.

You see by December 22nd the house should be clean, the suitcase packed, homework down, and a blanket of snow granting us a white Christmas because that afternoon we were leaving for our very own 12 days of Christmas with his family.

Life apparently missed that memo.

You ever had one of those pre-trip preparations where the suitcase is at the back of the closet and you bang your head, hard, getting it out. Then nothing goes in to the suitcase right so you re-pack a dozen times only to remember that there's cleaning to do. So you run around like a chicken with your head cut off doing that when a vague memory of food and water filters through your head. However, you're too busy trying to understand your syllabus on the paper you haven't started.

This is how he found me, extremely frazzled in the early afternoon, house cleaned (once the whirlwind settled) but still unpacked and slightly rantish as a closed my blank word document and gazed at a very unsnowy scene outside my apartment, while I tried to guess what I would need to pack for my first Christmas away from my parents home.

Giving me a big hug without taking off his coat (he's a very wise man, give the crazy gal a hug before anything else) he proceeded to pass me Lego Indiana Jones and asked me to read the note attached.

Sighing slightly, I did, still thinking about my packing,homework, and everything else which wasn't up to my perfectionist standards.

The note essentially told me that if I opened the game I would find the answer to "eventually".

All thoughts of my to do list were instantly replaced. Finally, the long awaited answer to my question. I eagerly opened the box only to be  told to turn around. Turning around, there he was, dressed in a suit, holding a red rose, and getting on one knee.

Now to be honest, the next part gets a little fuzzy. Much to his and our friends glee I was rather blindsided, as I generally am when something involves me, and may have needed a few moments for my brain to reboot ( a rare event). However, as soon as my ability to speak returned, I believe it could be said that my response was an enthusiastic yes :D

So that's my story and you know even though I didn't ever finish my cleaning, the homework was finished eventually, and the snow came when it came I couldn't have cared less about any of them cause even though the weren't done the way I planned the day was still perfect and I couldn't have dreamed of anything better.

It's funny how time changes things.

The older I get the more this rings true.

Christmas and New Year's are natural markers for reflection, for remembering what has come and anticipating the events yet to come.
Looking back on my blog from this time last year, I find myself, once again, in awe of how much can change in just 12 months.

Today, I sit, still in Saskatchewan. My first Christmas outside of Ontario. It's a surreal feelings fighting the power of years of habit. Although, if I were to confess, my greatest sadness today is the lack of my furry friend Kes who sits 2000 miles away with my father, apparently enjoying her yearly treat of wrapping paper balls which she eagerly protects her foolish humans from in their blissful ignorance of the paper's maniacal intents.

So, I grieve the loss of the familiar, of the known. Whether it was good or bad, it was still my childhood and something that everyone must grieve as they move into adulthood. Yet, even in this good and necessary grief it's encouraging to look back on the past and see how much growth has occurred this year.

I often laugh when I look back at this disjointed collection of thoughts and memories I call a blog. Mainly because it's one of the few ways I can see for myself where I've grown as a person. I often point out, with disbelief at their obliviousness to the fact, the growth I see in my friends, and how they've grown this year. I'm honoured to call them friends and amazed at the heights and depths (which aren't necessarily bad remember) they've achieved this year. I'm blessed to be witness to their lives yet often am unable to witness similar movement in my own progress. I find myself so blind when it comes to self. I think my perfectionism is less than helpful in this area. How do you find the time to work on growth when you're constantly trying to refine what you've accomplished without the time to celebrate or acknowledge. I hope I've become better at this and will continue that line of learning as this new year unfolds.

I also think back to last Christmas for other memories. Sitting on my bed, wondering if somehow I might get up the nerve to tell a certain someone that I might just like him more than a friend only to shake my head at my ridiculousness a moment later. I'm honestly surprised my parents didn't go insane with how many times I changed my mind in those two weeks.

Imagine my surprise almost a month later when we found ourselves having that much debated conversation only to learn he'd been wondering the same thing. Or, imagine mys surprise as he slowly became my best friend. Yet, that still doesn't compare to the surprise when he came by this week and I turned around to see him on one knee (I'll see about telling the story later if he doesn't mind).
I can't believe that this summer I get to marry my best friend. Yeah, a year can make a difference.

People sometimes laugh at me because I relate so much of life to music, but it's Christmas so here I go again. One of my favourite songs is Seasons of love from Rent. It asks the question how do you measure a year in the life.

This year wasn't always easy, leaving college, starting a Master's, moving out of my parents, dating, getting engaged, and everything in between. There were laughter, tears, and sleepless nights but what I remember reflecting back are the people. The times shared with loved ones living life and stepping out. Well, that and starry nights but that too is another story.

Merry Christmas everyone.

Education and Disabilities part two.

So, now that I'm a little calmer (and I do mean little) maybe I can continue my thoughts.

I recently wrote a letter to my school asking about our policies regarding students with disabilities.

Now, before I continue, let me point out the profs here are incredible. I know I've mentioned this before but they, for the most part, are willing to go the extra mile to help students succeed regardless of what challenges they may face. Recognizing this, I was interested to see how the school would respond.

What I got wasn't encouraging. I got a nice letter telling me all the wonderful things the school has in place, a wonderful letter glowing with pride, for doing the minimum. I was told of writing centers and mentorship to help those with learning disabilities. Now to be fair, they can be helpful. I'm currently part of that program helping a wonderful young woman try and get ahead academically. The thing is these programs only help students with disabilities because they have been set up to help any student who is struggling. It's great that helps available but let's not pat ourselves on the back for something that was more happy accident. Okay? Good.

I was also informed that students could ask for longer exams periods (which I received), quieter exam rooms (though I know people who have been denied), and wheelchair accessibility for those who need it in the classroom. Yay, we're legal.

I still have to wonder. I'm considered a disabled student by the Canadian Government. My disability is mostly invisible. For me, going to school means planning and organizing around things my able-bodied friends would never have to consider or would think of if they weren't with someone who struggled and sometime's it's the simplest thing.

Like putting up a handrail to get into the dorms easier.
This is common sense. It doesn't take that much effort to slap some posts together and return some dignity to student in dorm (all our dorms also have stairs to get to the first floor minus one which is alternate housing and is also the only dorm with laundry on the same floor).

Things like door handles. For years I was unable to use the one stair case to get to the library because the door dislocated my shoulder, I went the long way around to use a slightly more accessible staircase. The library, though accessible through an elevator, has aisles that would be difficult to maneuver a wheelchair through, and the exit requires going through that evilly, heavy door to get back to the elevator (on a plus, maintenance has been leaving this open lately, awesome people).
Actually most of the classrooms have small walkways too, come to think of it.

The cafeteria has a lift but in 6 years i can't remember it ever working, and I know that on my bad day the staircase just didn't seem worth the trouble for the food.

I have to wonder what school could be like with a few changes. What would it be like to have handrails and easier access to dorms, caf, laundry, etc.. ?
What would it be like to have people consider mobility issues such as walkway space, doors, bookshelves spacing and height (notice how the book you need either requires popping a shoulder to reach or doing a faceplant? What's up with that?)
What would it be like to have an official advocate in the school who could help you navigate through the mounds of paperwork to get assistance, to assist with mediation between profs? Who could assist you when your illness and mandatory attendance collide?
What would it look like to be part of an educational system which sees the best in each of its students and strives to see everyone represented beyond a mere minimal acceptance but truly pushing themselves and their students to be the best they all can be?

Or is a place like that even possible? Is my hope really just a dream?

The Church, Education, and Disabilities

So, I'm a little annoyed that my first blog back from my paper rush will be a rant but I feel this issue is worth it. Just a warning, this will be a little ranting but, hopefully, you'll still be able to track with the heart of what I'm saying.

Life with a disability is challenging. It's a hard truth at times to take in for those of us facing health challenges but this doesn't make it any less true. Society was not created by the disabled and it is often lacking accessibility. What drives me nuts is the attitude found among a lot of Christian institution in regards to disabilities be they mental or physical.

Now, not that it is a comforting thought, but few schools in this country seem to  be overly striving to even out the deck for their disabled students, but come on can we at least shoot for a 10% satisfaction rate for what you are doing? I mean, come on schools you wouldn't pass a student who got 7% in a class why should we, the disabled student population, be expected to give you a pass with such dismal ratings?

Students with learning disabilities should be given consideration during exams, not a free ride by any means, but if they can't write why can't they do an oral exam? Why can't students be allowed to take an exam in a quiet environment if the distractions of classmates who can focus through anything (or have done the math and don't care about exams) are posing an unfair disadvantage? Why is the process to getting help in school so muddled. People who could help remain unlabeled, small school don't have a specific advocate and some students feel forced to navigate the system alone.
Some schools force mandatory attendance or risk failure of the semester, but what about those who fight the invisible battles of CFS, Fibro, or even EDS? Conditions which suck the life and energy out of you. Without anyone to speak for them some of these students fall through the cracks, risking poorer health, poorer grades, or not completing their degree all together.
Even little things go unnoticed. I wish each school would take the challenge of walking through a day with a disabled student before passing over concerns. To see what it's like to struggle with doors, stairs, and unthoughtout classrooms. To understand the frustration and embarrassment, the energy, stubbornness, and pain, the extra hours most disabled students will put in to stay level with, or in some cases surpass their classmates and most definitely fly by the expectations put upon them.

I think of teachers I've heard of who purposely frustrate Asperger's kids who dare to go to college to chase the dream of helping others, I think of my own frustration trying to get around with an unreliable body and the pain and exhaustion of full-time studies. I think of a girl who's only wish was a railing to walk with dignity into her dorm.

Now, before anyone starts to say anything. I realize some of this costs a lot of money but some is as easy as an attitude and awareness adjustment. I think back to my class last week. As usual, my EDS was unhappy and day two saw more than one joint going A.W.O.L. my prof not only called extra breaks so I could rest but then walked me home to assure my safety. A minor sidetrip for him, meant I was allowed the dignity to finish my day well. This prof isn't the only one I've encountered either. Over my academic career I've met many profs who I can honestly say made the difference as to whether I continued on or not. Sometimes all it took was a simple "I'm here." It's amazing what makes a difference.

So, why isn't Christian Education and the church stepping up to the plate? Yes, again I understand the money thing but here's my counter. Isn't the church called to a higher standard? Isn't the church called to look out for those who are weaker, the alien, the widow, the orphan, perhaps, even the disabled? So, why are we allowing the church to buy into society's mantra that a person's worth is determined but what they can physically offer and reciprocate? Why isn't one's value based on the identity of one created in God's image?

It breaks my heart. I've worked in churches, I've worked with disabled children and youth and these kids (and adults) have so much to offer if people would only slow down to listen. I'm honestly at a loss what to do. So, for now, I'll step off my soapbox, and if nothing else I choose to listen but I also choose to speak and maybe one day, one of us will be heard.

Yes I'm still alive

but posts are still awhile off.

Sadly I'm knee deep in a paper which is consuming my life (I'm currently in lockdown, wee)

Also, I've promised my fanfic readers that they're first up for an update as soon as the paper's finished. The blog will be as soon as I've caught up on everything else.

Til then,

Peace all.