There's a line in this that shot right through me. It's not even the main point of the article and I hope it's not selfish or anything to talk about it but I just can't move on. I'm holding it all in and then it just says it so casually and I'm frozen afraid of my own feelings... https://twitter.com/EugenePuryear/status/1276969666024439808

He spent two and half months in an induced coma and as a result he deconditioned.

Here's the line:

"I'm lucky that the only lasting effect seems to be that my legs aren't yet strong enough to hold me, but I'm doing physiotherapy twice a day,"

I'm Canadian - the country with the "universal healthcare" system that successive neoliberal politicians have stripped from inside. It's like years ago I had an aerial view of some BC roads & realized there's a thin line of trees along road and behind them clearcut...

So people driving along the road see "Beautiful BC" like the license plate says but it's a literal facade.

That's our healthcare system.

A little while after the onset of my dx I became 'bedbound' (not a fan of that word but you understand it).

It was a result of a combination of factors not just the dx (which took a long time to get). It was medical neglect, a toxic level of years long high dose prednisone, so many complications including repeated life-threatening infections. Muscles weakened by combo of these.

I spent years in this state. While hospitalized for something else I managed to beg physio. At same time they managed to finally get me off the prednisone. These two things meant that after months of sitting at the bars imagining myself standing, I felt a twitch.

It wasn't visible but I felt it. After months more work I was holding myself upright in bars. I want to emphasize the goal was never walk again or not - just whatever was possible for my body. It soon became clear tho in everyone's mind walk again was where this was heading.

And then the acute care hospital could no longer keep me and tried to send me to GF Strong - because my legs were still like wet noodles - but first they operated to fix my footdrop. Long story short GF Strong did not think I was worth it. Their actual words.

At some point the fight became less about getting me physio and more about the fact they really thought I was a throwaway person. This angered the acute care hospital. There was actual shouting match btwn physio, doctor & GF rep outside my room.

I will always remember the physio who was the very opposite of someone who one would expect to yell. She said: No one. Not a single person 'deserves' physio if she doesn't.
She threatened to whistle blow, put her job on the line. It was a scene. I was in my room crying.

Honestly I was just so grateful to hear someone fight for me.

Reluctantly they took me and then this is what happened: I got physio for one hour once a day for 2-3 times a week. That's it. Bc of foot surgery most of my time there I couldn't even do any.

Then I got septic because they wouldn't listen to me that I had a UTI.
I had one session of using a walker with a physio walking behind me with wheelchair if I fell and then they discharged me. I begged, pleaded, argued, grovelled, went up the ladder. I was called selfish.

I was told about the people waiting to get a bed.

They sent me home without proper bed so I had to sleep in my wheelchair and they sent me home without warning me of what they were already noticing - that contractures were starting. I fought for more physio & was denied.

They sent me home with a walker - two. One with wheels and one without. They are in storage. I guess it's time to donate them. That was ten years ago and they've never been used.

I'm not sad about being a non-ambulatory wheelchair user. It was the 'you're not worth it' part

It was the way they beat up on me emotionally for daring to ask for more than what I was 'worth' in their opinion.

They just kept turning those screws trying to destroy any semblance of self worth that might lead me to object to being tossed aside.

And they did it all under a giant photo of Rick Hansen their hero. What use was I? My disability didn't raise funds for research.

And anyway, there's just something about reading that sentence in that article - like it's just logical, of course he'd get physio twice a day...

It just has me frozen. Like if I move I might start throwing things out the window or start screaming and crying and never be able to stop. Except of course I would be stopped by the cops and we all know where that leads. But what do I do with this? (Rhetorical)

It's knowledge no one wants to listen to and/or doesn't believe and/or doesn't care and/or is quite ok with because eugenics and "burden on society."

So you just keep living in a city and province that pretends it has universal healthcare - except not for you. No not you.

And the thing is I know it's not just me who isn't worth it in their eyes. But that's what the beating down is for - so we each go off and wait to die or speed up that happening thinking it's just us. Each of us suffering alone isolated. Their words playing over in our heads.

So if you want to know why I sometimes share personal details on here - that's why. It's for whoever else was told they were selfish or is being beaten down in this moment. It's not you. You are worth it. They are not worth it. They are the people who follow orders for paychecks

Anyway, thanks for listening. I just needed to repeat that sentence. The way he says it so casually like it would be ridiculous for this not to happen. What kind of country would not do that?

I'll tell what country not only wouldn't but didn't.

Canada.

And the thing is Canada you need to listen to it because a whole lot of people are at risk during this pandemic - not just because of the triage protocols but because they will need what I needed and didn't get.

You need to start listening to disabled people. RIght tf now.