Saturday, July 23, 2016

Doing Damns The Darkness

Life is such an odd thing. Right now, on several different fronts, I'm going through a really tough time. As such when we drove to Saint Jacobs on Thursday night for a fundraiser for Choices in Fort McMurray on Friday in Kitchener, I felt very little like traveling, staying in a hotel, or getting up to do a lecture. I just wanted to sit in a corner and give up.

But, that not being an option, we got to the hotel. Joe went and got a few things we needed while I did what needed done on the computer and then, when he got back, he dragged me out for a walk. I enjoyed the fresh air and that frisson of excitement you get when crossing a busy road with cars that refuse to slow to let you pass, and it was simply nice to get out.

Getting up and sitting on the side of the bed, I wondered how I was going to give a lecture, particularly one with some humour in it, when I felt humourless and washed out and just tired from life. But the clock ticks and you have to get to it. So, I did. Soon we were in the car and then at the venue.

The moment we went in and joined in the buzz of excitement from the team from KW Habilitation who were putting on the fundraiser, things began to change. We watched the bake table get set up, Joe snatched a strawberry and rhubarb pie right off, we met the a fellow with an intellectual disability who was going to be selling 50/50 tickets and he was into sales from the get go, we saw the preparations for the lunch that was going to be on sale. We talked with people about what the fundraiser was about and why it was important.

For those who don't know Vita organized a (we hope) province wide fundraiser for Choices Association for Community Living in Fort McMurray. We called them to see how the wildfire had affected people with intellectual disability in Fort McMurray given the devastation to the town. What we heard was distressing and we received permission to go ahead and attempt a big fundraiser along with other service organizations serving people with disabilities across the province. Communities Support Communities, we called it - and this was part of that initiative.

By the time I was to start I had picked up from the mood of the room, from the determination to help others, from the general excitement that comes from an audience that's at a lecture on a Friday for a good cause. For the whole day I was away from cares and concerns and worries. It was a wonderful break.

Doing good things, and the right time, can have a remarkable effect. "Doing Damns the Darkness," for me is more than a phrase on this blog, it's a reminder to me that I can take action against anxieties and worries and 'things that go bump in the day'.

I have another, the last one, on Thursday, and now, I know it's there to help others, but it's going to help me too.

I'm good with that.

Friday, July 22, 2016

Strangers: An unanticipated post

I don't get tired of it. I've had the power chair for many years now and I don't get tired of the independence it gives me, the way it allows me to make a contribution to my life with Joe. We had arrived home and were expecting company in just under an hour. I had to run up to the bank and Joe needed to unload the car. I hopped in my chair, came down the elevator with him and then while he headed to the car, I headed to the bank.

We are together a lot. Even so, I still love these moments where it's just me doing what needs to get done. I went to the bank, bought a lottery ticket, and then headed home. I decided to come along the north side of Bloor Street to avoid the construction constriction of narrow passageways on the south side. I regretted it almost immediately. I was like a tiny little boat going west as a tidal wave of young teens came east. There were hundreds of them. All packed together, leaving very little space for anyone else on the sidewalk.

There was nothing to do but go forward. I'm not fond of being surrounded by kids this age, I have uncomfortable memories of being that age that I don't think I need to explain. Anyway, I headed on. An odd thing happened. Three times.

I was noticed by a small group, and they immediately started the pointing and the taunting. IMMEDIATELY. I tried to maintain dignity and keep going. But, only seconds later someone near them, someone their age, a peer, turned and told them to shut up. The voice was stern, not angry, and firm, not emotional. It was just a statement. SHUT UP. The voice carried authority. I looked at the young woman that spoke and she was pretty and petite and powerful. Her voice brooked no opposition and they silence. One even mouthed to me, 'Sorry.'

Wow.

Then it happened again. Another group started and another voice, male this time, spoke up. 'That's not cool, stop it,' he said. Again, a voice of authority. A voice that said, 'I mean this.' And, amazingly, they did. They did stop. I looked at him, again, a handsome fellow, athletic looking, I nodded a thanks that he brushed away.

Wow, encore.

And then it happened one last time. They were almost by. I'm not kidding hundreds. A young woman made a fat joke to the girl she was with, I heard it. I won't repeat it. The girl who spoke was as shocked as I when her friend turned to her and said, 'Why are you being mean? No need. No need.'

Then, they were by me.

I don't know who they were, where they were from, what brought them together. But I do know that there are some parents, or teachers, or mentors that should be really, really proud of the work they've done. I also know that there are some very cool teens who have discovered a way to break the code of silent acceptance of casual cruelty.

And for that, I'm thankful.

And for that, I'm hopeful.

Tuesday, July 19, 2016

A Big Deal?

Joe pulled into the parking spot and I climbed out of the car as he unloaded the wheelchair. He had to gather some stuff in a bag so I headed on to the nearest mall door. Being able to push up a slight slope over a bit of distance has really freed me to get about my business while Joe is doing what he needs to do. I got up the curb cut and was heading to the door.

There were two sliding doors so I chose to enter the one closest to my approach. I noticed as the door opened that there was a fellow with cerebral palsy walking along the sidewalk towards where I was entering. I nodded. He nodded. In I went. I had just gone through when I was faced with another set of doors.

Before I could register where would be easiest to get through, the door behind me opened and a voice said, "go to the door on your left, it's hard to tell, but it's automatic." I turned, and thanked him. He smiled. "We've got to have each other's backs," he said. I agreed.

I went through the door that he had recommended and it indeed slid open for me, and I was inside the store. Joe then joined me and we headed about shopping for a birthday present for a friend.

It's tempting to say something like 'such a small thing can make such a big difference.' And, in fact, that was my first thought about the whole thing. But, I realized, when I thought about it, that it wasn't small at all. In fact, I think we make things like this 'little' ... like a 'little act of kindness' or a 'small gesture of welcome' ... when they aren't little or small at all.

Thoughtfulness isn't natural and it's always intentional. People may say otherwise, but I don't believe it to be true, I believe people need to see where their actions could make a difference and then after noting it they have to act on it, that, in and of itself, is astonishing. People may brush aside their actions by saying 'anyone would have done it, when in reality, very few would have.

However you want to frame it, he affected my day, my evening and my next morning. I can still hear his voice in my mind. It's a big deal.

It mattered.

And I believe he meant it to.

Monday, July 18, 2016

So Cool It's Cold

At our beach picnic on Saturday, we had some issues with accessibility. All of which I kept my mouth shut about. We were out with Ruby and Sadie and they know well enough about access and access issues, sometimes I want it to be just fun.

The problem we had was that the benches alongside the boardwalk weren't attached right to the boardwalk. Some of them were, all taken, but most were set off to the side. So there was no access from the boardwalk to the bench. I began worrying that we'd have no where to sit. But then I noticed, way up ahead, a spot where there was a connecting path between the boardwalk and the bike trail. I zoomed up, rode down to the bike trail and then approached a bench from behind. I got us landed.

Now there was this huge barrier between me and the beach itself. I hadn't planned on going on the beach, sand and wheelchairs along with my weight do not for a good roll make. But the barrier was glaring and made me feel like I was sitting much lower than the boardwalk and looking over it, because, well, that's what it was. But I kept ;my mouth shut. We were here to have fun and, in fact, I was having fun.

So were the kids they were in and out of that cold Lake Ontario water getting closer and closer to jumping in each time. They both made it right under the water and then ran pell mell up onto the hot sand and plopped on it, soaking up it's warmth. They loved the contrast between the cold water and the warm sand.

At one point Ruby ran up to the boardwalk, crossed over and jumped down to where I was. She was full of stories about how cold the water was and how hot the sand was. I listened to her tell the story while she was covered head to toe in sand and not minding it one bit. Then she said, 'I have an idea.' I watched her run back to the beach grab the sand bucket and run to the water. She scooped up the water and ran back to where I was, jumping down and sloshing water everywhere. 'Put your hand in the water,' she commanded. I complied and remarked that it was indeed really cold.

She was gone again. This time she just crossed over the boardwalk and then dumped the water and found a spot and scooped sand into the bucket. Back she came, jumping down to me and holding out the bucket, and said, 'Put your hand in the sand.' I did and felt the warmth.

'There,' she said, 'you got to feel exactly the same things that we get to.'

And she was off, back across to where Joe was standing and I heard her explain to Joe, 'Just because Dave can't come over here doesn't mean he shouldn't feel the lake to touch the sand.'

And, of course, she's right.

There's all sorts of ways that a place can be made accessible.

And by the way, after all these years of living here, that's the first time I've ever touched Lake Ontario.

That's so cool it's cold.

Sunday, July 17, 2016

Transformation

We were having an amazing day. We'd been the the beach and had a picnic. As always we brought both chairs, the power chair and the manual, which was used to haul stuff and to give me seating options. When we arrived there wasn't a picnic table available we pulled up to a bench, I transferred into the manual, we lifted the arms on the power chair, put the table cloth over the seat and voila. It was great.

Sadie spotted the ice cream truck just before the bus was to arrive to pick us up so I asked her if she could wait til we got home and then we'd go out for ice cream. She agreed just as she spotted the bus turning in to pick us up. Our ride home was fun, the whole day had been lovely.

Once home and showered, sadly there's less of a beach left for other people because a couple of buckets of sand washed itself down through our bathtub drain, we left to get ice cream. I held the table on an outdoor patio a couple blocks from our home. It's my favourite patio for having tea and people watching and I smiled as I watched them cross over to me, hands full of cones and sundaes. Joe then headed in to get us each a tea and the seconds later was back.

Everyone was in a brilliant mood, Ruby and Sadie were at their best, sharp, funny and inventive in their story telling of the day. We played a game to see who could give the meanest look that had us all howling. It was awesome.

Well, to us at least.

An elderly woman had come out and sat at a table furthest from us. She was clearly in a cranky mood and looked over at us and the kids with annoyance. Let's face it, this is Yonge Street, right down town, it's not a fancy table at a tea shoppe in a meadow in Wales. It's noisy. And we were noisy. We laughed a lot.

At one point, after several really nasty looks, she'd have won the contest, hands down, I'd had enough of her sighs and her cursing under her breath. I looked at her, and said, "Oh, come on!" That's all. I wanted to know that she'd been seen and that, really, she's upset about kids laughing?

Kids should be laughing all the time. Childhood should be full of laughter. I was laughing. I should be laughing more. Joe was laughing, his life needs more of that stuff too. We were all getting a lot of oxygen and exercising our senses of humour.

The interesting thing was, as soon as I said what I said, her face changed. She stopped. She looked over and saw the girls curled up in laughter as Joe was trying to make a mean face, which he was hysterically bad at, and her face softened. It was like she connected the noise, which was irritating her, with the source. He whole body seemed to just relax.

I caught her a couple of times smiling when the girls said something funny. Like Sadie's dramatic announcement that's she's having a really, really, bad day and that we had to treat her nice with extra ice cream. And Ruby's commentary on the actions of the security guard.

She said, 'Bye,' when we left.

I've never had that kind of encounter before. I expected her to become more hostile or to turn her chair completely away. Even so, I wanted to let her know that her actions were completely out of proportion to what was going on. But it was like throwing cold water on an unnecessary fire. She just, suddenly, became a nice old woman.

Odd.

Yet I know I've been called on my behaviour and immediately changed.

So, maybe not so odd.

Saturday, July 16, 2016

Being The Trigger

"Do you have diabetes?"

As a question from a stranger, it's way too personal. But as it was a conversation that I just fell into and as we were both talking about general health and wellbeing, it didn't seem out of place, or out of context, so I answered that I did indeed have diabetes. I am no longer insulin dependant, because of the diet and exercise program I've had myself on for several months, but yes, I have diabetes.

It was then that I remembered why I don't like telling people this fact.

Everyone has a story about diabetes, it seems. And every one of those stories is a horror storry. She, my conversation partner, launched into a very detailed story about her sister in law who has diabetes and stubbed her toe.

"Just stubbed her toe, a silly little thing like that."

Boom Boom Boom, it's coming, Boom Boom Boom.

"And three months later she lost her foot."

From that she went to a huge generalization, "People with diabetes just don't take care of themselves."

I called her on that one.

But, here's the thing, why would you just automatically tell someone, who has any kind of illness or disease the most outrageous and tragic (in your mind) story you have to tell about that diagnosis?

My response was, in my mind, 'shit why did I tell her.'

I have heard, when telling someone about having diabetes, about lost digits, lost limbs, lost mobility, lost lives. Yikes and double yikes, it's like every story I hear is about this Boom Boom Boom tragedy that lurking around the corner waiting to strike me. And, I kinda know that might be true, but I don't need to hear it every single time I mention that I've got 'the sugar'.

In fact, when I was telling a group of friends about this experience and complaining about always being told a tragic story when mentioning the diagnosis, one of my friends jumped in with a tragic story about someone losing a leg. Right. Yea. Glad you were listening.

Does that happen to anyone else? Are you the trigger for a 'tragic story' to be unfolded on your lap?

Sheesh, I'd like to hear once, just once, about some who has diabetes and 'you know is managing pretty well!'

Right, in my fricken dreams.

Friday, July 15, 2016

My Mount Everest (and a note for DSPs)

To you, maybe it's a ramp, to me it was Mount Everest.

All the disabled parking was taken. There were virtually no other cars in the parking lot, but the 10 disabled bays were jam packed full. So Joe let me off at the front of the building and went to park further away. I turned my chair, I was in my manual, and considered the ramp.

It was long, so long that they'd put a four foot flat space about 2/3 the way up, a place to stop and rest. It was steep, really steep, I'm sure it was legal, but I'm also sure that mountain goats would have rested comfortably on the slope. I rolled over to the bottom of it and looked up. Way up.

I knew I had time because Joe was parking, as I said, a fair distance away. I've been lifting weights, I am noticably stronger, but this was a big ramp. Suddenly I knew I had to try. I started.

Yikes. And yikes again.

Steep ramp, long ramp, fat guy in a wheelchair, those three things combined suddenly to make it really hard work. I'd gotten about half way up the first incline when I just knew I couldn't do it. But if I let go I'd go flying backwards down the ramp. Unpleasant images formed in my brain and I knew that option was out. I pressed on and made the rest spot.

This is good enough. I've proved my point. I'm much stronger than I thought I was. But the top was so close, I'd rested, I looked and still no sign of Joe. I edged to the edge and then pushed. This was the steepest part of the ramp. I'm quite high up now. the ramp makes up for about a dozen stairsteps to the ground. I pushed and was now midway up that part of the ramp.

Joe sees me and reacts with shock to where I am on the ramp, which is only a few feet from the top. He comes up behind me, he knows better than to simply grab and help. He waited. My arms were straining and I was really tired. Yep, I asked for help.

We cleared the top.

No I didn't climb Everest but I almost did.

And here's the thing.

Almost is good. Really good.

Especially when 'not possible' is the starting point. I think we forget that when we are working towards a goal. I think we consider failure as our 'go to' definition of how we are doing when we don't quite make a goal on an attempt. For me, failure would have been the lack of trying. I not only tried, I got almost to the top. Next time, the top, or if not the top, closer. I feel great.

I've learned to change the definition of success. And because of that, I'm so much happier and so much more likely to continue on. This morning I added 7 minutes extra into my exercise routine using a higher weight than I'm comfortable lifting. It's just 7 minutes, but I know I need to get even stronger and I can see the top of the ramp. I need a bit more strength. So for now 7 minutes more of a weight that I struggle with.

For you direct support professionals reading this. Remember if you are working towards a goal with an individual reward effort over accomplisment. It's a fundamental when teaching someone, it's the trying that gets to the succeeding so it's the trying that needs the reinforcment and acknowledgement. Succeeding is its own reward.

I nearly cleared the top. Months ago, I would have waited at the bottom.

Score!