I AM TOO

 While there are a lot of downsides to living a virtual life, confining one's face and one's passion into a computer screen, there are upsides too. About three months ago I met someone on Facebook and we've been chatting ever since. I'm not sure how he found me or why he messaged me but he did. I get a lot of unsolicited messages on Facebook and can't keep with the volume, but this one caught me, "IS IT OKAY FOR ME TO BE ANGRY AT SOMEONE?" That was it, I was intrigued. I checked the profile and saw that he was a man with Down Syndrome from the coast of British Columbia.

I responded, "Yes it's okay to feel all your feelings, including anger. Can I ask what made you feel angry?"

"YOU WON'T GET MAD WILL YOU? PEOPLE GET ANGRY WITH ME FOR FEELING ANGRY."

Okay then, let's slow this down a bit. "No, I won't get angry at you for feeling anger, I may be concerned what you do with your anger, but I won't be mad. Oh, and can you write me back without all caps? It's like you are shouting."

"I never hit people, even when I'm angry."

"Good on you, so are you going to tell me what made you angry?"

I don't hear back from him for several days. I thought that I had stuck my nose in and scared him off. I figured if I hadn't heard in a week, I'd write and apologize. He has a right to anger, sure, but he also has the right to privacy.

"Just as the week was ending he wrote back. "I don't like what they do with their eyes."

"Are you talking about being stared at?"

"YES."

He then described to me a life of difference and how that difference was like a magnet pulling attention to him. He said when he goes grocery shopping people stare, ALL THE TIME, ALL THE TIME, ALL THE TIME.

And that makes him angry. He also told me that his staff doesn't like it when he wants to talk about it and they tell him to just ignore it. "I just can't," he said.

"Last time a group of teenagers stared at me, I got angry. I told them that they were rude and should be ashamed of themselves. Then I stood there and stared at them. They tried to make me stop but I didn't. They just left."

"I got punished for not being appropriate in the community, but I don't care, THEY weren't being appropriate."

Then after a second. "Are you mad at me?"

"No," I wrote back, "I'm really proud of you."

"I am to." he said and then for emphasis, "I AM TOO."

This morning

 

Image description: a cartoon bird asks 'what are you throwing away' as s/he watches another bird moving boxes with wrapping that says things like 'not good enough,' ugly,' 'failure,' that bird says 'oh, just some old ideas and beliefs that were taking up too much space.(I do not own and did not create this image, I can't cite the source ... If the owner wants it removed please contact me in the comments)

This morning I was awakened by our new neighbour, I looked at the clock and it was just after 4 in the morning. "Getting an early start on the day?" I thought as I snuggled deeper into my blankets and pillow. But. I was awake, groggy, but awake and my mind started to wander as it does. I found that I needed to do some shifting of the boxes that fill up my heart and mind.

Last evening we had had dinner with Marissa and the girls. I hadn't seen them in a few weeks and my gosh are they tall! Not to worry we are following lockdown rules. Joe and I are very careful about going out and any interactions that we have while out. Marrissa and the kids are the same, we all respect this virus and know that caution is our best defence. And of course, we numbered 5 the legal limit.

Joe and I had planned to show them something we found on the BroadwayHD channel called "the Going Wrong Show". Each episode is about a play put on by a community theatre group that goes horribly wrong. It's devastatingly funny. We got it all set up and then, hoping against hope that they'd like it, we pressed play. Well, it was like a laughter bomb had gone off in here, the girls laughed long and loud and completely unrestrained. Of course, we did too, having seen it before was not even slightly like seeing it with others.

We were drained ... yes, we served ham for dinner. Appropriate, no?

That memory was with me as I surveyed the work that I had to do. I found built-up resentment that had to be moved, pessimism that needed to be moved to make way for the door to joy which had become blocked, it took some time but I got up feeling like important work had been done. I listened again to my neighbour, chirping way from the branch just outside our window and I'm sure the song sung was sweeter.

Laughter isn't just a release, it's also a request to reexamine your life and your attitude and your beliefs. Sometimes we all carry with us things best left behind.

Bring Light

 The task was to make scalloped potatoes. I had been putting off even going into the kitchen knowing that there was a big bag of spuds waiting for me. So, I distracted myself by browsing through my emails. Then, just as I turned to finally get started at the peeling and slicing that awaited me, my computer phone rang. We seldom, if ever, get calls through the computer so I glanced to see who was calling.

The call was from a man with Down Syndrome who I had met years ago in Wales. He and a couple of other folks with disabilities had come to a training that I was doing. We all hit it off and ended up with our host (Hi Jayne) and my caller and two friends in a pub having lunch. We were loud and a bit raucous but then again so was the pub, we expanded to fit the space we were in. Joe and I remember this particular lunch fondly and talk about it often.

So Stephen all these years later decided it was time to give us a call. I can't tell you how nice it was to hear his voice and, once again, laugh together. He's a lovely and funny guy. But more than that, he's a thoughtful man. We talked about the pandemic and compared our lockdown in Ontario with his freedom in Wales.We all agreed that it had been too long since we last talked.

When I hung up I felt ... happier.

That wee bit of connection, that evidence of caring, that moment where it felt like we fell into warm memories, was lovely. It was a gift, unexpected. But it was a gift, so welcomed. I need to remind myself that sometimes it just takes a moment to show someone that you care and think about them, it doesn't take much. If in dark times we can bring light, then bring light.

In the kitchen, right after his call, I chopped all these potatoes, and onions, thinking, not about the task, but about our time in Wales and about Stephen and his friends and about the amazing place we stayed at there. That one call turned around my day and took me in a different, and better, way.

Bring light.

The Air

 We had arranged to go shopping a few days ago, booking an appointment with the accessible bus system up here, and were having a relaxing cup of tea when there was a knock on the door. It was the driver who had arrived an hour and 20 minutes early. He said he would wait but we rushed around and were out to the van about ten minutes later. We arrived at the grocery store and pulled out our list of things we needed and began about the business of getting it done.

After we went through check out there was still an hour before the bus home was to arrive. Luckily it was a warm sunny day so we went outside and found a spot where Joe could sit and I could park my wheelchair. The way we ended up was that Joe sat beside the cart and I was in my chair across from him. Being that it was a wide sidewalk this left lots of room for people to walk by.

I felt the sun on me and enjoyed its warmth. I had to fight off the nap that was creeping through my shoulders but I did slide down a bit in my chair. People walked by and said hello or smiled, it was nice to be in and of the community. It was nice.

Then a woman about our age walked by and growled at us, actually growled at us, admonishing us for 'taking up the entire sidewalk' and 'making nuisances of ourselves.' It happened so swiftly and came from nowhere. The air which had been sweetly scented with welcome and friendliness suddenly  took on the bitter smell of anger and rejection

After it was over Joe and I found ourselves wishing the bus would arrive and we could get out of their.

Her attitude and demeanor managed to take a lovely moment and make it an ugly one.

There are too many of these people in our lives, avoid them.

Joy

 For all of my employed life, I have focused forward. I never worked a day in my life that wasn't aimed at a particular goal. This served me well in two ways. First, it gave me focus and purpose and for me that's always been a mighty combination. Second, looking forward meant not having to look back. I have a troublesome relationship with the past, I didn't want to have to confront the painful things I experienced. I didn't want to acknowledge the painful things I have done to others. So yeah, face forward and follow the vision was a good strategy for me.

Even as I moved into retirement, I'm still working, mostly lecturing but also some consulting as well. This has made the transition to 'restful relaxation' possible. It's also nice to have focus and purpose alongside the multivitamins to take in the morning. Retiring into a pandemic wasn't wise planning though. I have a lot of free time and I don't really go anywhere.

About a month ago I found myself sitting in my easy chair hoving above a snooze. That morning I had chatted briefly with Ruby and Sadie and I found myself remembering. I could feel the weight of each of them as they rested in my arms. So small. So trusting. So easy to love. I relaxed into the memories of each of them. And I was comforted by them, the sounds and smells of those days and the laughter that came easily from them.

Then riding down a hill here in Newmarket I suddenly flashed on the silliness of the crookedest street in the world, a San Francisco landmark. The first time Joe and I saw it we were so profoundly disappointed for a few seconds, then having had testosterone for breakfast, we decided to see how fast we could get through the curves. Joe took the challenge seriously and screamed tires a couple of times, or maybe that was me screaming in the passenger seat. It was like a carnival ride.

Last night we had nachos, as I looked at the plate I was reminded of the nachos we had in Halifax, the best one's I've ever had. I can remember the restaurant we had them in and then remembered the people we had met there. It was like rapid-fire memory.

All of this has surprised me. I've been so fearful of the past that I had not noted, that there were good things there too. I had confined too much to disregard.

So, I'm working on ways to keep myself safe from the part of my past that burns while exploring that which gives me joy. 

Much more joy than I ever anticipated. 

Pajama Paralysis

 There is a phenomenon known in medical circles as 'pajama paralysis'. It refers to patients getting to the hospital, being admitted, putting on pajamas, and getting into bed, and then assuming the role of complete neediness. They refuse to do things for themselves and require help in areas far beyond their diagnosis. I have never experienced this in all my hospitalizations, I've always wanted to get up and move because I equated movement with home and my life here.

But the last time I was hospitalized, it happened to me. It was kind of forced upon me because the first morning I woke there was the note 'patient must not get up' written on the whiteboard beside my bed. They didn't want me to move or do anything until I met the physiotherapist. No amount of begging could get them to reconsider. And then, I gave up. I'd fought too many battles and I didn't have the energy to fight one more.

That was a mistake.

For the week that I was in the hospital, I let my energy and drive just drain away. I didn't argue about the decisions that were made about me, I didn't cause a fuss at all. I hated being in bed all day except for the 20 minutes I had with the physiotherapist, but I succumbed to the hospital routine and the sign beside my bed told everyone to expect nothing from me in the way of physical movement.

Then, suddenly, I was on my way home. On arrival at home, I found that the loss of drive and the loss of expectations had taken deep root in my mind. I found it difficult to do anything, even stuff I enjoyed doing before now just seemed like a chore.

I had lost strength, yes, but I also lost the perspective that would have had me worried about that. To be honest, I'm still struggling with this. I know, really deeply know, about the tyranny of low expectations and what that has done to people with disabilities, I know the damage, I've seen it.

So the last few days I've worked on caring.

Caring that I love driving my own life.

Caring that I have high expectations for my life.

Caring that I am still aiming at goals.

And this is heavy lifting indeed.

What happened

 Outside, the sky is gray and a little snow has fallen.

Inside, the heavens have opened revealing a bright blue sky.

Yes, that means the equipment worked and I am back to independence again. When it arrived it didn't look like I was expecting and I immediately knew it wouldn't work. But with some adjusting, things seemed to be about right. I put off using it for a few hours, I was so afraid of it not working that I decided I'd like a bit more time to worry.

Then it came time I had to use it. The first try was really, really, unsuccessful. Oddly I calm down and Joe gets impatient, I have to take his arm and remind him, to just take a breath. We meticulously map out a new approach. I am prepared now for failure. That's exactly the stance I need to take. I consider other options. There are none. Then on the second try, our planning worked. I was good to go. Golden.

This changes things for me massively. 

But I've learned so much over the past few weeks.

Stuff I'd like to share with you. Starting tomorrow.

What Time Is It Now

 I am sitting here.

Anxious. 

Watching cooking videos on YouTube while stewing in my own apprehension, is not a productive use of time. I am waiting for the arrival of the solution to my increased need for support. If it works, I'm golden. If it doesn't, well, I can't even think about what that would mean. I've gotten through the last couple of weeks with help from Joe and our neighbour across the way, they say it takes a village but sometimes it just takes one really good neighbour and now, today, we anticipate that the need will be gone and I can regain my independence - or more accurately, I will transfer my need for help from other people to better equipment.

This morning, after being assisted, I told our neighbour how much I appreciated what he had done and how much he had given me. It was important that I said, out loud, what I was feeling so deeply. Then a couple hours later and we received the confirmation that the delivery was set for today, from noon to three. I've had trouble talking to Joe about my worries because he's worried too and he deals with that by discounting the fears that we both have.

You know I hear a lot about ageing and see a lot of really funny videos or memes about the topic. I get the humour, I love the humour, but ageing impacts a disabled body differently, or perhaps the cost of ageing is higher when you are disabled.

So I choose to be worried.

And I chose to watch someone I don't know make vegan doughnuts. 

Because there comes a time when worry, and a vegan doughnut, are all you have to give to the future.

Anger

 Have you ever spoken to someone really harshly and then seconds later lived with regret for having spoken? When I came home from the hospital, I found that I needed help from Joe in a new and different way. Now, to be clear, Joe has never complained about helping me, he's too good of a man for that. 

But.

I was angry.

Really angry.

It's hard for me to rely on Joe quite so very much.

And in response to that.

Did I feel grateful?

Did I ensure that he knew I appreciated him?

No, of course not.

I had anger in my blood. So a couple days ago, I lost it. I spoke to him roughly and rudely. I could hear my anger vibrating in the air between us. Seconds later, when alone, I felt miserable. How could I be this person? I don't want to be the bitter cripple.

After breakfast, I turned to Joe to explain to him what I was feeling and why. I explained that my anger wasn't well contained. I explained that I knew I had no right to speak to him the way I had. I told him that when I did it again if I did do it again, to call me on it on the spot.

I've settled down a bit now and a new routine is building between us.

And we're good.

Really good, right now.

Loss

 Yesterday I had the privilege of having an on-air conversation with Yona Lunsky as part of the 'Let's Talk' series hosted by the National Alliance for Direct Support Professionals. The topic was essentially looking forward and past the pandemic. This was based on an article that Dr. Lunsky wrote for the International Journal for Direct Support Professionals. In that article, she considers all that we have lost over the past year, the many thefts of COVID and suggest we notice and acknowledge the losses and give space to the traumas that come with them.

It was such a good conversation that I carried parts of it into my afternoon and evening. I was thinking really intensely about the losses I have felt once COVID shut me in. There are the obvious ones of course but the profound sense of loss was something else, something different. I realized it as I was turning on Netflix. I was tired of being the passive recipient of someone else's storytelling. I am a storyteller. My whole approach to public speaking and training is to tell stories. This blog has existed because of the stories I encountered as I went about my business.

I have no stories.

I have nothing to tell.

I have nothing to share.

Ah, that's the loss that I feel so keenly. I go out into a world where people are staying apart, staying away. I go into interactions with people wearing masks and visors. I speak only when spoken to by a clerk or shop assistant. Gone are the spontaneous moments that give me insight into a moment or an idea.

Here I sit in front of a computer screen with nothing to say, or more accurately, with no story to make what I have to say engaging.

I am lucky that I get to have conversations like the one with Dr. Lunsky and the folks at the NADSP, those give me a way to feel that I'm still participating in my world.

I want the new normal, whatever it is, to tell me a story that I can bring back here to you.

I've missed you.