My PSW

 My PSW.

I have met two but only one came back. The one I liked. She is a bit shy to talk to but is up and enthusiastic about helping me. She agreed to allow Joe to train her in the tasks that she needed to do and watched carefully everything Joe did. She learned when to step out of the room, when to help, and how to know when I'm panicked. We finished the training Thursday and all agreed that Friday she would take over the main job which requires both strength and touch.

This has all been very tough for me and it's taken a lot of getting used to, but my PSW has allowed me to be frank and unafraid in speaking my truth, my reality, and letting those things guide her. Joe has been a splendid teacher and I watch him yesterday give over his role to someone else. We did remarkably well for a first try and I only anticipate that it gets better as we go along and my trust in her grows.

We have figured out how to respect my boundaries without infringing on what's required to help me. I don't want her to see me naked and I don't want to be seen naked either. So far, I haven't felt diminished by the service she provides and I feel a relief that Joe gets a break in his day. I'm a wee bit needy.

I think the takeaways for me are 'voice,' and 'being heard,' and those two things leading to action. There is no point in speaking to someone who hears you but makes no change. I am fortunate to say, I'm good.

She's good.

And I'm grateful.

Canada Day

 It's Canada Day and I'm conflicted.

I have always been a proud Canadian, I have loved this land starting with the summer holidays I went on with my family as a youth, right up to the lectures I've given in every province, but one, and every territory, but one. Our country's beauty is hard to describe but brilliant to experience.

But I have struggled with my love of Canada, first as a youth who was discovering his sexuality, to the youth that fell in love with another boy. It was illegal then to be gay, in fact, the word 'gay' did not exist then. I learned that the famed tolerance of Canadians often hid vitriolic hatred. I loved my land but feared the people who inhabited it.

The stories that are surfacing about the dead children at residential schools are not new to me. I learned about the residential schools from friends who were survivors of them. Stories about priestly abuse and government inaction brought about a profound sorrow. How could this be?

In the land that I love.

How could this be?

These are people I know who spoke the unspeakable.

These are people who suffered, I don't know, us.

So today is Canada Day, like many typical Canadians, we celebrate it by not celebrating it. Call for canceling Canada Day if you will, but most of us will go about a typical day off - doing nothing. And that's pretty much what we white people have done regarding this blight on our history. Nothing.

People can do many things in memory of these slaughtered children, but I choose to focus on the future, creating new leaders and new teachers from within the indigenous communities of Canada, we need them and their voices. So, consider Indspire as a place to start. 

That Canadian history so brutally treated indigenous peoples doesn't mean our future has to as well.

Tonight

 It's been an interesting couple of days here, what with the joys of aging and the perils of needing help. I was formally assessed a few days ago to determine if my disability was such that I could use a PSW to provide assistance. I had to answer a thousand questions and then wait while those questions were calculated and turned into hours, if any. As it turns out I qualified for one hour a day for seven days a week.

I was assigned two PSW's who would be providing service to me, I considered myself lucky because I won't have a revolving door of people coming into my apartment. I decided that before I'd let them provide service (touch me) I wanted to talk to them about the attitude I expected and the safety I needed. I've now had both those meetings and tonight will be the first time that I will be getting help.

It is at this juncture that I begin to appreciate all that Joe does for me. He didn't sign up to be with a wheelchair user and he certainly didn't know how acid-tongued I could be when frightened. But nevertheless, we both have agreed that it's time to slowly lift some of the responsibilities off his shoulders and give them to someone else. But for me, yikes.

A couple weeks ago after a really bad day, Joe assisted me into bed and when I laid down it was the first time that day that I felt safe. That was the gift he gave me. I cherished it.

As we met the two PSW's and I had a chance to think about our conversations I realized I had to lower my expectations. You see, Joe does what he does out of love for me, incomprehensible love, and it is in that love that comes the excellence of his support, the gentleness of his touch, and the desire for me to feel no shame. That's a lot to lay on someone else, and I can't.

I just want good competent care.

I don't need anyone else's love and esteem.

I have that in large measure.

So we will see how it goes tonight and go from there. I am willing to simply try, and in the trying, allow my vulnerability to expose itself. That's hard for me. But, it's time I asked for and received the support I need.

Housebound

 I am not afraid of going outside.

But I have grown quite comfortable with my present status of being housebound. There is probably a better word for that, but that's the only one I know. I haven't been out for a couple of weeks and am not planning to go out this weekend, even with the lifting of some restrictions. 

There are two reasons for me to continue my stint as being housebound.. 

The first is that the activities that would pull me out are still restricted. The gym, still closed. The mall, still closed. Me, still in. I'm just not interested enough in what's presently on offer.

The second one is more personal. I am tucked away from people's stares and unwanted commentary about my life. I am safe here. Joe may look at me with exasperation sometimes and annoyance at other times but he never looks at me the way the world sees me - a fat freak in a wheelchair. Never. Joe sees me, he reacts to me based on what I say or do, as would be expected.

Yesterday we watched a TV program that played, for laughs, a scene wherein a young man got stuck having to go on a date with an 'uggo' which I've learned is a slang term for someone ugly. The 'uggo' in this case was a rather pretty woman who in the eyes of the world, was fat.

You expect me to go willingly into that world?

There was a time when 'ugly' laws and statutes made it illegal for some to be out in public. That those laws and statutes are no longer in place does not mean that they didn't make the transition from being written in law books to being written in stares and glances, in disapproving faces, and in disgusting commentary..

So, no thanks.

I will go out in the next round of lifting restrictions, I want to do what's on offer then, and I willing to brave presenting myself to the world again.

Sometimes Disability Pride is shown just by going out.

Pride

 Pride.

It took me a long time to get to pride. The walk through shame was long and perilous. I can't describe the feelings I had in marching in Toronto's first pride march, my heart raced like an engine that was powered by shame set ablaze by fear. When I remember that day, I remember those feelings, so much so that I have to force myself to remember that, fear or not, shame or not, I was there, I marched.

Pride.

I lectured for a couple of years before Joe ever came to hear me. I invited him to come to hear me speak to an agency serving youth in the city of Toronto where I had been invited to speak about homosexuality and intellectual disability. I remember Joe sitting there, his nerves for me almost out of control. And in the middle of the speech, I stopped and identified him. I felt the stirrings of pride in identifying this man who loved me.

Pride

Over the next couple of decades, pride was a companion for most of the journey. But when I had my first catastrophic illness, I was terrified. But I was not alone. I knew though that this would test our relationship in ways different than before. Joe was with me through the diagnosis and beyond. It was clear that being with me was going to involve a lot more work for him. He's still here, with barely a complaint, he offers me help.

Pride.

Realistic Pride

 So it's six days into Pride month.

And I'm angry. I'm angry at the fact that, try as I might, I just can't seem to let go. I saw a post on social media this morning from a fellow proudly displaying the rainbow flag and loudly sounding off about his 'allyship' with the LGBTQ+ community. Nice, right? Appropriate sentiment, right? On our side, hoo rah! 

But you see I knew him when. I knew him when he was comfortable with his heterosexual superiority. He proudly spouted about how two men couldn't actually love one another. He waxed poetic about being in love with his wife and told story after story about their fabled life. I always left any meeting with him like I'd walked through the sludge of trite, overblown, sentiment.

And said nothing.

Because as brainless and typical as he was, he had power. He had used that power. He had reported people, perfectly fine people, to their bosses and demanded their firing. I don't know how many notches he had in his toolbelt but there were many.

And along comes the wind of change

And he is determined to let his pride flag flap in the breeze.

Now he's a supporter.

Nowhere is there apology. Nowhere is there an acknowledgment that he was our enemy before he became our friend.

I wonder what is asked of me.

Gratitude?

I can't muster it. I can muster anger though. Joe and I were a couple when it was still illegal to be gay in Canada. Our first acts of love were as criminals. When we sought out those of our kind, we went to clubs where it was never a certainty that you would make it home alive. 

There is a picture of the two of us from our early university years. We stand beside each other. No touch, we looked like cousins forced to take a picture together. We were afraid of pictures. We were afraid of evidence. We were afraid to draw breath too loudly. We were afraid that we took up too much space. We were afraid, so we locked the world out and lived in sanctuary.

This happens to me every year at pride. I remember too much. I remember too clearly. I grieve for our lost life, for our inability to face down fear, then, and inability to forgive, now.

Forgiveness.

I'm sorry I can't.

Today: Pandemic Be Damned

 I shaved my beard off today.

For those of you who don't know, I grew a rather prodigious beard over the last several weeks. This was not a fashion choice. This was simply a result of laziness. I never really liked shaving and did so only because I needed to look tidy for work. But I'm retired now. But I'm living through a pandemic now. But I don't want to.

So it grew fiercely.

So it grew furiously.

So it grew and made a home for errant cheerios.

Food in the beard, an unexpected bonus, snacking available round the clock.

Last night I decided that I would shave the beard off. 

And then it hit me.

I HAVE SOMETHING TO DO TOMORROW!!

MY AGENDA IS NO LONGER EMPTY!!

I AM A MAN WHO HAS SOMETHING TO DO WITH HIS TIME!

FIE ON YOU PANDEMIC, I'M BUSY TOMORROW.

This is where I am now. This is where a lot of people are. Being thrilled at simply having something to do. Something attached to real life.Something that has nothing to do with existential panic.

I wish you could see me. 

Maybe I'll do a selfie this week.

THEN I'LL HAVE SOMETHING TO DO AGAIN!

Black Lives Matter: The question asked and, hopefully, answered.

 One of the best things about having a blog is the opportunity to keep a record, a diary, of your reaction to the world. 

One of the words things about having a blog is the opportunity to keep a record, a diary, of your reaction to the world.

As I have learned many times over the years, I have a lot to learn. I have been lucky to have readers who have held me accountable for something I've written or the way I expressed myself. I remember using the word 'schizophrenic' inappropriately, and after a long conversation, near argument, with a reader, I changed the text. Once done, I read it and realized that the change made things better.

Sometimes I'm wrong.

Sometimes I need to be corrected.

5 years ago I wrote a blog about the Black Lives Matter protest at the Toronto Pride Parade wherein the parade was stalled while negotiations went on about diversity and inclusion at Pride. I wrote something about that protest and a few days ago was called to account for what I'd written. Foolishly I'd erased the original post a few days after having written it so I didn't have it to refer to. In many ways, my memory does not match the memory of the woman who approached me about it. But she was a reader, she had found the post hurtful, and her memory of the event needed to be respected.

It took everything I had not to go into 'defense' mode. Somehow I knew this was an important conversation and I needed to listen to what she had to say. Sometimes listening hurts. Our conversation was long and I don't feel I can encapsulate it here, but what I can do is answer the question she first asked me, "Do you still feel the same way about the BLM protest at the parade as you used to?"

So here goes, and in fairness, my thoughts have been informed by what's happened in the past 5 years.

1) I am, and always have been, against all forms of racism but specifically anti-black racism.

2) The Pride parade began as a riot a fact easily forgotten. I sometimes shake myself because we were in the first march in Toronto and it was terrifying, no crowds cheered that day. I mistrust the crowd that shows up every year, who are they now, what violence can they do?

3) Marsha P. Johnson and other black transgender women led the battle at Stonewall and it is their activism that we carry into the future. Defiance and pride began the protests, but now pride alone lives on to march down the street, that is until BLM held an accounting of where we were.

And yes, if you are asking, I have backed up these beliefs in actions - cause therein lies the heart of apology. I hope this helps fill in as the blog I should have written that day.

Hello

 I remember her.

The first time I met her.

She was sitting at the end of the bar.

Messy drunk.

Loudly drunk.

And people all around her, mostly gay men, ignored her. It was as if her presence was just slightly less than tolerated. They all spoke of her disparagingly - using words that were meant to hurt. They called her, 'it'. 

I was new to gay life, new to the idea of gay bars, new to the social mores of the community with which I now identified. Even so, common decency told me that this was wrong. I did the only thing that I thought I could do. I said 'Hello'. Friendly like. Small town neighbourly.

She looked at me suspiciously but then replied, "Hello," and we talked.

Today is marked as a day against homophobia, transphobia, and biphobia. We hold these days that have the implicit message that it's the straights that need to clean up their act. And, oh dear, they do. But we can't hold these days without looking to see our own behaviour. Are we guilty of the same things?

The nastiest thing that's ever been done to me as a gay man was done to me by another gay man, he suggested that someone 'like me' who looked 'like me' could not be gay, should not be gay. He was clear that the idea disgusted him. I remember this clearly. 

Everyone needs to double-check their attitudes and triple-check their behaviour. The enemy may come from within. So use this day to think about who you are and the attitudes you hold. All of us will benefit. But until then:

So if you ever see me.

Messy drunk.

At the end of the bar. 

Please say 'hello'.

Under the Arch

 I was doing a lecture yesterday broadcast out of Scotland when I noticed it. And once I'd seen it I simply couldn't look away. Let me preface this by saying that I'm not someone who spends a lot of time in front of a mirror, I don't actively avoid them but I'm not fixated by them either. I have a friend who can't walk by a mirror without stopping, even for a half step, to check himself out. I'm not that guy, I make fun of that guy.

Even so, I do recognize myself in a mirror and have gotten a little more used to seeing myself around because I spent lots of time on zoom, and go to meetings, and, teams, all of which have my image on the screen somewhere. So, yesterday about ten minutes before the end, I noticed it. There was something wrong with my face. Something that I'd never noticed before. I brushed aside my observation so I could finish what I was doing and once done, I took time to really notice.

My left eyebrow is permanently arched. I couldn't get it down even after a concerted effort. I couldn't feel it being raised, but there it was, in front of me, raised. One half of my face looked like I was watching a Biden speech the other looked like I'd just been told that Trump was coming for dinner. I got over it, so what, and then went on to my next meeting.

Later I was thinking about my eyebrow, deep, ponderous eyebrow thoughts. I  realized that arched eyebrow built a little bit of my childhood and, more than that, made its way into my adult life. When I was young my parents were told by one of my teachers that I had the 'gift of the gab' in response to their question about how I could be so, very, incredibly, verbal about everything, apparently, I was a bit exhausting.

My mother took to responding to how I arranged by day into tightly packed stories that I was eager to tell, with the question about the hero of my story, (me), by saying, "Who the hell do you think you are?"

The answer wanted was nothing, nobody, and certainly not the hero of any story.

This tactic worked, I stopped bringing home stories and began coming home to grunt out news of my day. Well, I quieter. I preferred that to facing questions as to my place in my own universe.

Growing up and into a life of training and lecturing, I rely heavily on the 'gift of the gab' and the stories that I have to tell. And no one has asked me for many years the question, "Who do you think you are?"

And it's a pity because now I have the answer. "Why, I'm Dave Hingsburger, pleased to meet you."

Explosive Knowledge and the Love of Auntie Gladys

 I spoke to my Auntie Gladys only two days ago. I had been trying to get in touch with her ever since she entered the hospice where she had gone from the hospital. Even though I rang several times, the phone wasn't answered. I had heard from my brother that Auntie Gladys was very weak and needed assistance with the phone, I had to call and hope that one of her family or someone from the hospice was there to help her. I took a shot on Tuesday and the phone was answered by a nice woman who got the phone over to her. 

The voice I heard was barely recognizable, it was so weak and it seemed impossible it came from such a vital, powerful, woman. When I told her my name she didn't recognize it and instead asked if I was coming that day. I told her that I lived in Toronto and that fact didn't help her to catch my memory. Later, I mentioned Joe, Auntie Gladys always liked Joe, and that was it. The key. The pebble. She said, ""Joe!" "Dave and Joe" oh my hello" Joe and I both spoke to her and then we were on firmer footing.

I spent a little time telling her that I had such fond memories of her throughout my life, that she had enriched not only my life but our lives. She responded, "Yes, they are good memories aren't they." Besides 'bye, now' those were the last words that Auntie Gladys said to me. She died the following day.

After hanging up the phone, I thought about the fact that Aunt Gladys remembered me through Joe. It struck me that she was the second person in my family who knew about our relationship. That knowledge, that explosive knowledge, had no power that would change her view that I was still her nephew. She kept my secret until keeping it was no longer necessary.

I read again today that parents still, routinely, throw their kids to the streets once they know of their difference. It seems that their hearts simply weren't big enough, or strong enough to withstand the blast. Explosive knowledge had nothing on my Auntie Gladys, and I will forever be grateful to her because of it.

Next!

 We were standing in a line-up ready to check our groceries through. We'd waited about ten minutes and were now next in line. I could see the cashier finishing up and I knew once she'd cleaned the area we'd be good to go. Then out of nowhere a woman appeared, she wore flappable as if it was a couture line, she had in her hands a pre-wrapped sandwich, a bottle of water, and a fancy cupcake. She approached me and asked if she could go next, she had just a few things, then it all poured out.

It was short-staffed where she worked and her lunch hour was reduced to only the time it took to get something. "I never thought about the line-ups here, I should have thought of them, but really I have to get back, there are people depending on me." I glanced over at Joe and he smiled and we both agreed she should go ahead. She stepped in front of me just as it was time for her to go up and pay.

We heard it first, angry breathing, it was coming from the woman behind us in the line-up. She was some mad. As soon as we had eye contact, she lit into me, told me that I had no right to let that woman go in front of me, that my decision affected everyone waiting patiently in the queue. I registered shock on my face and said, "It was only a few things and she was pressured to get back to work. "How is that my fault?" she asked.

"It's not your fault, I said, "it was your cue to be kind."

Then, I was called up. We pulled our cart over to the side and said to her, "Go ahead, I inconvenienced you, this will hopefully make up for it.

She looked a bit chastened, but she went ahead.

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.

Neighbours

 I am home.

I am not yet whole.

I need a little extra help to get me through the day. Maybe 5 or 10 minutes in the morning will do it. My first thought was to get in an occupational therapist to see if an adaption can be made such that I need no extra help. She came up with a few ideas but none were immediately applicable. During her visit, she took in everything and kept circling back to the extra hands that Joe needed for that brief few minutes in the morning. We spoke about a personal support worker but that sounded too intrusive to me and way more formal an arrangement than I'd like.

So I let her wander around with Joe in tow while I went on the computer and contacted my neighbours across the wall. I told them the situation that I was in, I told them what I needed and asked if they could help for a couple of weeks. In a few minutes, it was all arranged and I knew it would be okay.

I told her about the arrangement and her first response was 'are they nice' as if their agreement to help wasn't evidence enough. Then she yattered on about how she could never do that, she's too independent, that asking people in your life for help was almost unnatural. 

But even so, by the time she'd left I had a plan in place and people to rely on.

And I wonder how many needs could be handled this way, neighbours being neighbours, people helping people. It wasn't even part of her evaluation, it was the question not asked.

But for me, I have great neighbours and right now, that's all I need to get back on my feet again. Tomorrow will take care of itself. 

Hospital

 It's in the early afternoon and I am sitting at home writing a blog. The only thing that makes this noteworthy is that I was just discharged yesterday from a week's stay at the hospital. Joe came home to find me on the edge of the bed trying to put my pants on, but I couldn't do this simple task. I had already left home. I didn't recognize him or the ambulance guys or the hospital team. I was horribly confused and kept pulling the IV lines out of my arms and I lay covered in blood.

I knew that I wouldn't be alone, that Joe would be with me, so I began to call for him. In my mind, he was just out of sight and I needed to coach him back. For hours I called out 'Joe, Joe, Joe, Joe' and then I'd do it again. It alarmed me that they didn't know who Joe was and I begged them to listen to me. I WAS NOT ALONE. There was someone who loved me.

About 4 hours in someone stuck their head in my room and said, "He's not here, we are under lockdown. You are laying in a hospital room by yourself." This news settled me. Joe would be there he just couldn't be there right now. 

It took a couple of days but my knowledge of where I am in time and where I was presently located came back. The days became blurs as they sped by with the speed of inertia, nothing would happen, and then when something did, it really did.

I didn't see Joe, physically, until I was dropped off by transit back at home. The funny thing about being dazed and confused, you begin to feel a loss of trust in your senses. But, I need not have worried. There are not many things I am sure of in this world, but I am sure of this. I love Joe. He loves me right back.

Moments: One of four

 He was running, keeping up with his mother who was animatedly talking on the phone. Then, suddenly he dropped. I turned from where I was seated waiting for Joe, I thought he'd fallen but he hadn't. He just stopped midstride and dropped to tie his shoe. He must have noticed the laces flapping and decided spur of the moment, to fix the situation. His mother, not noticing, kept walking. After a couple of steps, she noticed he wasn't beside her anymore she turned and saw him studiously tying his shoe.

After a couple of attempts, he started softly crying. He reached for his mother when she arrived and her phone was plopped into her purse and she accepted the hug. "What's wrong," she asked. He launched into a stream of frustration and self-abasement. He was stupid, he was dumb, he was never going to get it. His fingers all the while worked at the laced as if they independently were wishing the laces into a knot.

"Take a breath," she said.

"I'm going to make you late, Mom," he said.

"Take a breath," she said. "You aren't dumb, you are rushing. We have time. You have time," with that she took his hands and stopped the fingers. After a couple of seconds, she said, "Take another breath. Try now."

He focused on the laces and his fingers, under his command, did what they were supposed to do. The knot was tied.

"See," she said. He went to hug her and she stopped him. "You need to promise me that you will stop hurting yourself, calling yourself names, it's not okay. Now promise me." He did. Then she hugged him and they were on their way.

I have been sitting here struggling with what to do next. I want to leave it there, I want this to be simply an example of wonderful parenting. But, the devil is in the details, and sometimes meaning is too. Does it matter to the story that the son fighting to tie his shoes was in his thirties and his mother was at least 20 years older than him? Does it matter that this was a man with an intellectual disability?

I think, maybe it does.

I think that makes what she did more remarkable.

She didn't tie his shoe for him and rush off.

She hadn't given up.

She taught him how to create space for himself to succeed because she believed that success was possible. She taught him to be kinder to himself in a world wherein he may find little in the way of compassion.

We, all of us, need help with both those things. Making space. Inner kindness.

We, all of us, will be learning these things throughout our whole lives.