Wednesday, 20 April 2011

Daren's Blog

“This Is Good.”
Daren Costin

I first began writing this over four months ago. I was very doubtful of it and of myself because traditional reality is quite different from a reality that is generated by a brain that has suffered some sort of trauma. At times I am embarrassed by it. I am now happy to define as an Invisible Disability meaning I wasn’t affected physically so you can’t see it, and it has taken me three years to find that particular term. I would write, read and always feel self-conscious about it because I stood on both sides of the looking glass…completely understanding myself as a stroke person, yet completely misunderstanding or demanding some qualification of myself as a normal person. (What is normal? Is it possible that I am more normal now then ever? One of the many questions that have come to my head as a result of my stroke.) In the end, I will write this one story as it was, is, and always will be.

It had been about only two weeks since the actual stroke. Those two weeks were packed full of family trauma, much of which has been healed and much of which may never heal. The duration of my stroke up until this moment has involved “many” people in many ways….physical, mental, emotional, cognitive. My memory was gravely affected, but I now know that I remember the moments and faces — it just can’t remember the particulars such as names and numbers. Just a trifle!

The stroke Daren is very much at peace not being able to remember people by their names. For example, let us use the name Jane, an occupational therapist. One day we had just finished a group session where we discussed the newspaper articles for that day. Oddly enough at the time I couldn’t read, but I didn’t actually understand that I couldn’t read so I’d flip thru the paper and “read” even though I actually couldn’t read. In the beginning there was actually very little I could understand about myself. I didn’t recognize that I couldn’t remember what I wrote, or that I couldn’t write in a straight line or that I kept on bumping into things. But as for Jane — it was Jane who taught me again what the names of fruit were. I had found a small card with pictures of fruit on it, and I asked, “What do you call this?” Such meaning in such a question from a man my age. Jane was kind and sat down with me and described how they felt and how I would eat them and as much as she could share with me about the fruit. And then she labeled the card and gave it to me. And how I treasured that card for months to come! I would re-read it to myself…you are an apple…you are an orange (which was a very hard word to read). Months later, I would go to the grocery store and smell, squeeze and talk to all the food! You’re an orange…I forget what they call you. And everything about those moments became a part of me – the card, the names, even the light in the room but most importantly was Jane because it all revolved around her and it still does each time I go shopping…I remember how she sat down without hesitation… just for me…with me…looking into my eyes…trying to convey the essence of what an apple and orange were to me. I still don’t actually remember Jane’s name. I only remember how she feels to me. And to me that is much more real than a name. I think that’s just how love is. Perhaps, it’s all about salvation? Jane, to my mind and soul, is an actual event full of life… and one of my first gentle teachers in my new life. It’s a peculiar way to remember people, but on the other hand, because I have discovered I thrive on happiness my mind has no need to focus on bad memories of people. And so, out of the darkness she came to help me into the light. A tear comes from my eye.  
The one moment that had the most lasting impression on me occurred at the same time I was seeing Jane. But this involved physical rehab. In the beginning, my body could not work very hard due to the stroke. It has taken me three years to reach the point where I can just begin to jog. Yet as I jog the quality of my vision declines, my balance begins to wane, my right side gets lazy, and I have to focus on my pace or I will forget to breathe and I will just get plain fuzzy all round! I look fine but in reality I’m a little bit wobbly, can’t see all that well and so forth.

Physical rehab began with a quick assessment, which I thought to be quite silly. Assessments always baffled me because they are of course designed to discover and reveal the unknown, so I was in the dark no matter which way you cut the ham. And so began my physical rehab. I thought I was going fast on the treadmill until I saw some other guy and was able to compare. I walked like an old man. Like most of the discovering in the very beginning it was very depressing. I understood that I could not do things the same way because that was obvious to me, but I could not understand the why…I did not understand the meaning of the word stroke, of what I had survived, of what had happened. That would take close to two years before I came to understand, in a sense, the meaning of life. And so I continued to toddle along at a snail’s pace on the treadmill thinking I was flying!  
My time in that hospital would be short so we wanted to get me oot-and-aboot as quickly as possible. I think we were all relieved that I remembered old territory as there would have been nothing worse than getting lost in my own closet on a daily basis. There are some changes of course…such as north, south, east, and west. Before things just used to be east or west (or whatever), but now I only have a sense of myself and the immediate space around me. In all honesty, most of the time I never really know where I am in a sense…but I always know I’m right here and headed in the right direction. To me, that makes perfect sense because when I am extremely tired I only process my immediate space as it keeps me alive. And there ain’t nothing wrong with that. In order to get a sense of east or west I have to zoom out, and the more tired I am the farther out I have to zoom to get my bearings. The farthest I have to zoom out is over the continental North America and then I zoom back in to where I am to make sure I’m headed the right direction. I am able to do it in a few quick frames now. In the beginning I tried to use the sun as a reference, speaking quietly to myself and using my arm I would trace the sun’s path in the sky. Believe me…there are many confused people out there still staring at the sky wondering what the hell I could have been pointing at so intently and with such purpose! And once I had figure out where I was going I would just walk away! As for the walks, I was taken by a qualified trainer and by a younger student. I was roaring to go for my first walk! The younger student came into my room to make sure I was properly dressed, and I, like a kid, eagerly showed him my jacket, my boots…you get the picture. I was quivering. Life was so different. I felt like I had just landed on a different planet. I’m very glad I had a sense of direction. I didn’t care about going left or right at that time; all I could muster up was this way or that way.

In all I went for a total of four walks. Two walks were with all three of us as if we were on some sort of caravan. And the last two with the younger student. On the last walk, he made the comment that he had no idea why he was still there because all he did was take me for walks! It was a funny comment at the time but I also knew that it had to be done…and I also knew that I needed him because when I heard him mention that he was leaving I was flooded with panic.

It has only been recently, almost three years after, that I don’t panic anymore. He has been a part of this the entire time without knowing it. And so we did a total of four walks. I was taught to stop, look this way, look that way, and so forth. I relearned very quickly not to step in those things we call puddles…especially during the winter. And because it was December and snow was on the ground when I had my stroke…well… every day that I wake up, I emotionally and sometimes literally expect there to be snow…even during the summer. When it does snow I’m very relieved…as if all of creation is as it should be. And I still listen to Christmas music on my iPod all year round. As far as I’m concerned, it’s ok. The student left, and I was very sad and worried because I didn’t think I would ever get to go outside again. That is…until I got the wonderful idea of going outside on my own. But the problem was that it was now a whole procedure if not a two-ringed circus…what should I wear? What am I going to do? How do the doors work? The cars? And WHAT ABOUT ME!  
And so…I began to get up the nerve. I sat in the restaurant watching the people. They moved just as I did, so we had something in common, which made me feel less scared. What really scared me was all the movement going on…the cars and the people. It was a lot for my vision to make sense of. And it was a new environment, too. I don’t think I’ve felt so apprehensive. A simple thing but it seemed like a huge step…and it was.  
I finally got up the nerve to do it. I went thru the doors and just about had a heart attack because I was alone…alone in how I felt. I wasn’t about to ask somebody to take care of me and help me find a seat and then take me back. Twice that day I made it out…and froze like a deer in the headlights because I didn’t know what to do. At least, I had enough sense to go back inside. And that is when I began to “case the joint!” I was very sneaky about it and sat in the cafeteria and in the lobby looking where I could land after I had taken off! Actually the idea of taking off and landing wasn’t that far off because I was scared on the inside.  

And so I tried again, but this time there was a big supporting post so I turned around and went back inside. I had not anticipated running into a post. I knew where the seats were but I didn’t take into account everything else…like those big posts that held up the hospital for instance. As I re-scoped the area again I noticed them and couldn’t help but ask…”Where the hell did that stuff come from?” I was very suspicious and scared of the whole thing now. I felt betrayed…afterall I had almost plowed into a post. That’s the problem with vision…there is so much to it! But my curiosity really was kicking now. After about an hour I was feeling downright rebellious. I had to get to that bench.   
I, finally, made it to that bench. And I was a child once again. I didn’t just sit down…if you could picture an accelerated sit-down that would be it. I had done it from start to finish…even had my jacket on. And I was so scared because I was able to see a new piece of the world at a different angle now. There was way too much going on…cars and people. Everything was so big. It wasn’t until I closed my eyes to feel the world around me that I began to feel better. I could hear and know where the cars were. I felt the sun. The air. The breeze. The cold. It was there that I found peace triumph over my panic. Each time I think of the panic I experience I can feel it…but I can also feel how I calmed down after I had closed my eyes. I realized my hands were gripping the bench as if someone were going to steal it and I began to feel silly. I sat there for a few minutes, and I only had one small sentence to murmur to myself…as I rocked myself gently I whispered, “This is good Daren…this is good.” And it truly was.  

I had experienced and continue to experience life on such a bizarre level. It has only been the past few months that I have let go it all as a stigma. To me it is just life now and it is good. Stigmas are part of our belief system, so I know it will be an ongoing process, but at least I know it has begun.
I always wondered what God meant in Genesis when He saw that it was good. In my old life I never really understood why the words quite meant. Such a simple statement from a Guy who had just created all of everything? It’s not just good…it’s mind-blowing.

November 27, 2010 

Monday, 18 April 2011

Coalition For Persons with Disabilties/Employment Access

The Coalition for Persons with Disabilities was formed in 1985 as a not-for-profit community-based partnership of persons with disabilities and community groups working collaboratively to affect positive changes for persons with disabilities in the regions of Peel, Halton and Dufferin. Today, the Coalition continues this vision for independence and inclusion through a number of community-based programs and services.The goal is to promote full and meaningful participation of persons with disabilities in today's labour market. We have Employment ACCESS, Sign of the Times, Work Readiness for Youth, Discover your Personal Power Workshop, Employment PAH and the people who make all this happen. This is the place where we share our journey. Announce our achievements and display our talents. This blog page is for all of us Warriors who continue to fight everyday for Independence and inclusion for persons with disabilities.