Monthly Archives: December 2014

Fragments…

Crap. There are so many thoughts crashing around my head right now.

This- and the previous post is what escaped…

For starters I am working on the Shuffle series- and don’t ask me how that’s going, or how it works. Just know that it is and it does. I tried explaining my writing process– let’s just say it didn’t go over well 🙂 If you force it, it’s just not going to happen. Patience, my friend, is a virtue. And knowledge is power. So I wait, I gather knowledge. I put a plan in place. And then I execute and revise it.

There’s not much I know for certain, but I am certain I know how to read, and write, and do it well. The comment on my last term paper? “Where your paper needs some work is around paragraph construction.” Point taken, in fact, believe it or not, the point was taken before I ever handed it in. Two paragraphs. Two paragraphs. Those two paragraphs could have been 1. But there comes a point, friends, when even the perfectionists like myself are willing to let the minor imperfection slide. That point was 3am, after a month of research and a week of revision, on the last day of class before Christmas break, knowing that the argument was solid, well presented, and all the facts accounted for.

I had nailed that assignment. And I knew it. And so I laughed. And if you are laughing now, reading this blog and noticing that in fact some of the posts have paragraphs formatted in a somewhat unconventional manner, I take your point. But let me point out that adhering to the strange rules of english composition is not necessarily the point of my writing here. Here I allow myself to step out from between the lines, stretch, play, experiment, express, enjoy.

Adios amigos 🙂

Perceptions

Are you worried?

Worried about what?

Going blind at 27…

Hell no. I’m already there.

The focus shifts in and out all the time.

The lenses are shot, the old ones obsolete, irrelevant, a distorted past that does no good for the indiscernible future.

All is not as it seems or was or will be.

And I laugh, and I cry and I hope for the best.

I work for the best.

Here. Here for personhood. Mine alone.

That’s not a typo people.

In fact. It is the end.

Of the piece, that is a piece of the story, of my life.

As I know it.

Tada!

The Sammy Shuffle: part 1

Live Life Now:

Yes, I do sometimes feel sad about having a disability.

I really struggle sometimes with the proven fact that it takes me twice as long and least twice as much energy to do anything compared to an able bodied person.

Especially writing exams- everyone else will be done in an hour and go home. But I am stuck at my desk for 2 or more hours and can’t go home with everyone else, or I have to start early… So that is something that has always bugged me, but it can’t be helped. So I just try and look at the bright side. Mostly I try to make sure that the time I get, I make count. I make sure I study and know the material. And I do my best.

And when people treat me like I’m stupid or look at me like I am someone to be pitied, that can really get on my nerves. So I try my best to educate them briefly – though you have to pick your battles, some people have their own ideas that you can’t change. And sometimes I just say “to heck with it all” and just let them be and move on.

Most of the time I am comfortable with who I am and what I can do and what I have accomplished. I respect my known limitations, but I try not to focus on them or let them limit me. I adapt. I find ways to make things work.

And to cheer myself up, I usually take a walk, or read a book or watch a movie, or play with my dog, and I think about all that I have accomplished and the little things that make me smile, like the barn in winter; or jamming in the living room with Rube on piano, Dad on guitar and me and Forrest on fiddle with Twink in front of the fire and Mom listening from her comfy chair; or laughing with a friend on the bus 🙂

I think the great thing about true friends is that they respect and love you for who you are. I think there will always be a part of me that wonders what it would be like to be able-bodied, and maybe my friends wonder what life would be like if I were able-bodied too (like having them race me up the stairs and I win instead of lose and dissolve into giggles 🙂 ).

But for me disability is a culture, a way of thinking, an opportunity to connect with people (and educate them, too) to share my experiences and insights that I have as a result of living my life as a person with a disability. Everybody’s disability is different and affects them in different ways, and we all have different experiences. And I think those experiences are valuable, they are part of what makes us who we are.

For me personally, I believe in living my life as fully as I can with the resources and information available to me, including my body. I know it sounds corny, but you have to live your life now, be the best you can be. Don’t worry about what life could have been like if/when you were able-bodied, or if they’ll ever find a cure. If you want to work towards a better future, that’s awesome. Use what you have now to help you get there. But I really don’t think it helps anyone to ask about what could happen if in the near or distant future they were to find a cure for this or that, or what could have happened if in an alternate universe, Sam was born without CP and didn’t use crutches and everything was peachy.

Because I’m not a time traveller, I can’t see the future, and I can’t visit alternate universes and experience life as an able-bodied person. All I can do is live the life I have here and now and do my best with what I have here and now to be the happiest I can be. And life is messy no matter who you are, able bodied or not. People with disabilities just have to deal with a little more mess than everyone else, unfortunately, and come up with some creative solutions!

Disclaimer: All of the above is just from my personal point of view, and not meant to be directed towards you (or anyone else) to tell you how to live your life. They are just my thoughts, based on personal experience.

The Sammy Shuffle: an introduction

Hi there!

Lately I have been wondering if I should try writing more about disability, living with a disability, and advocacy/self advocacy.

Because I realize that my perspective is unique, my situation is unique, and that really no one fully understands or considers the world from my point of view.

And I realize that I have the opportunity to enlighten the people reading this blog, and also and the opportunity to flesh out my ideas and opinions and thoughts on my experiences and issues that are important to me, which either way, is a win.

So, I am going to give it a shot.

I want to be honest, I want to be articulate. But I’m warning you, these posts may be a little messier than usual, a little less artsy. I am going to spell it out as clearly as I can.

For example: rather than politely state a difference of opinion, I may instead say, “I absolutely don’t agree- and here’s why…”.

I acknowledge that you may not like what you read, you may not agree, and when it comes right down to it, there’s a possibility that I won’t like or agree with everything I’ve written either. It is a learning process for all of us.

I am open to exploring that process, and I hope you are too.

 

 

Up to my eye balls in stuff…

We’ve been good friends for more than ten years. Sometimes we are so out of sync, it’s comical, with both of us going, “What?! Now hang on a second.”  And sometimes we are so in sync it’s creepy 🙂

Like today: I can’t talk now, I’m making dinner (same here). And now I’m doing laundry, (no kidding 😀 I’m doing laundry now too!), I’ll call you when I’m done.

Once dinner was made and eaten and the laundry done, we had a chat. We talked for just 20 minutes. And can I say, it is such a relief to be fully understood, for even just a little while.

It has been a bumpy road for both of us lately… This about sums it up.

Friend: “It just goes on and on. I don’t understand. Oh, Sam. I’m just frustrated and so tired and really pissed off- you know what I mean?”

Me: “Yes. Yes, absolutely. I know exactly what you mean.”

Friend: “I knew you would.”

In conclusion, today was good- or more accurately, the good part of today was that I had dinner and did laundry and had a chat with my friend.

Once again, thank goodness for good food, clean things and friends who know what you’re all about. And thank goodness for cold winter nights and warm blankets and good books and fresh popcorn and movies that make me smile. And dogs. Don’t forget dogs.

-Sam

Untitled:

The wind howls. Rain rushes down the window panes and tires hiss on the roads outside. The keys click softly as I type. My fingers are clean and smooth and pink. It is a wonderful feeling, being clean. Not like days ago, when my finger nails on the left hand turned a mysterious blue…Don’t ask me why, I haven’t a clue.

Perhaps the fiddle is to blame. I played for an hour or two the other night, mostly Oli tunes. It made me happy. To find something immediate and real. To have something to focus on, to progress as fast or as slow as I like, to see and hear and feel the immediate effects. There is no one to tell me how to play, no marks given, no winning or losing; I can pretend no one is listening, and just play.

At first, it is hard. Awkward. My whole self trembles- I get self conscious even around myself sometimes, and everything freezes. Put the feet on the floor? Not a chance. Thaw those fingers? No such luck. RELAX! I shout inside my head. The command reverberates throughout my body and gradually the tension lessens.

The instrument has a wonderful, full sound. My fingers dance across the strings and the bow rises and falls. Bits and pieces of old tunes come together. I play until the tension is gone entirely, until I am comfortable with the flow of the music. Until the stress of the day is replaced with rich tones, vibrant harmonies and melodies that make me smile.

It has been a trying few days. And yet, right at this moment I am smiling, because I am clean and safe and warm in bed, this post is complete and I have a fantastic book to read before falling asleep.

Feeling messy

I’ll be honest. Life sometimes gets messier than I would like. Now is one of those times.

Off the top of my head, I kind of feel like I am on a treadmill and people are throwing veggies and insults at me. And I’ve been on the treadmill long enough. I have no more patience for this nonsense. I want to get off. And to be honest, I would really like to return those veggies and insults.

I need to get my hands on the antidote to this mess, in the form of a hug, and some shortbread and eggnog. Unfortunately, the antidote won’t arrive for a few days. And I have run out of patience.

That’s all the random ranting for today.

-Sam