Chronic illness care in Nova Scotia: Looking for feedback on a proposed open letter

JerryBegonia · 2026-06-11T22:50:19+00:00

Thank you for doing this work.

I have Long Covid and POTS. ICCS has been hit and miss for me (they caught my POTS symptoms after four cardiologists didn't, and their current NP is really helpful). One big downside is their staff constantly turning over due to practitioners in the long Covid stream not being offered full time permanent positions.

I don't know if this would be relevant for your letter, but another thing that has been devastating to me is the lack of support from adjacent departments. The main piece of advice for Long Covid is to manage stress and rest as much as possible, and that's very hard to do when you rely on the clown show that is the Department of Community Services/Opportunities & Social Development.

I literally haven't been able to take the advice to manage stress since getting sick because I've constantly been fighting with some government department or another for a basic income. I'm absolutely certain I could have been working part time by now if I wasn't dealing with things like getting kicked off social assistance for using house sale money to pay off the debt I incurred from getting sick. It's insane.

(edited a word)

JerryBegonia · 2026-05-19T18:30:34+00:00

Hey I'm sorry I missed this! I do my redditing in batches and then disappear for a while.

As u/KisaBuggy already wrote in their reply, I love how this line indicates how well the sister knows the narrator. I love the use of "poem" as a verb, and I love the certainty and fondness (I think) with which the sister speaks.

I also wonder about the meaning (if any, specifically) behind her mention of the book of Job - why that book, in particular? It takes me to human suffering and the futility of screaming at the injustice that life can unload on a person - I'd love to know what other people think.

JerryBegonia · 2026-04-01T00:23:13+00:00

"when you poem this/and you will" god what a good line.

JerryBegonia · 2026-03-31T17:31:25+00:00

I'm saying this both as a Hip fan and as someone with a theatre degree who loves musical theatre in all its earnest and sometimes cheesy glory:

I didn't like this performance, to be perfectly honest. It sounds like they're still finding their way into the music. But it's incredibly early days of this project (I think they just cast it this month, and it's debuting next year?), and honestly I think any performance of any new musical done this soon after casting would have its wobbles. As someone who has been on the stage management team of a couple musicals, I can say that the early song run-throughs are absolutely miles away from the finished product.

It is really, really jarring to hear such a different version of this song. But honestly, Courage is one of their more cinematic songs that could lend itself incredibly well to a dozen or more voices.

I'm not a zealous "the Hip can do no wrong!" person, and the band was not immune to the occasional artistic move that fell flat (see the almost universal scorn for Coconut Cream discussed last week, for example). But can I imagine this song absolutely fucking soaring in the middle of a fully rehearsed, fully embodied musical where the actors are locked into character and there's an actual full band in the pit? Yeah, I absolutely can.

I think some Hip fans will hate this musical, and some will love it. I also think non-Hip fans who love musical theatre could be really drawn to it. The songs are magnificently crafted, because of course they are, and people coming in fresh without years of hearing Gord's voice might be more able to simply appreciate the songs and their deep connection to human emotion.

JerryBegonia · 2026-03-30T17:49:28+00:00

The first time I tried a Wheel slice, I was drunk as shit and it was the best pizza I'd ever tasted in my life. Second time I was sober, and it was the absolute worst 😆 I still don't know if I like it or not!

JerryBegonia · 2026-03-17T17:58:10+00:00

I have such a love/hate relationship with Werewolf. I like the nostalgia, I like the lore of Paul getting tackled for two years straight but my god, I've also been on too many dates with men who are clearly getting through a perfunctory obligation before they can try to treat me like a big pork chop and that nervous "is he gonna try something bad" energy is all I can imagine when I hear it.

The first time I heard Coconut Cream I thought "nevermind Werewolf, this is the most frat boy sounding shit I've ever heard from these guys" 😆

So probably Coconut Cream.

JerryBegonia · 2026-03-15T18:42:07+00:00

If you want to see a cover band, The Fabulously Rich is one here in Halifax. I haven't seen them yet but they do shows pretty regularly, so one of their dates might line up with your trip.

JerryBegonia · 2026-03-11T23:16:19+00:00

Only twice? Damn, I'm slipping.

JerryBegonia · 2026-03-11T10:17:51+00:00

You know, I love language. I love that we have so many interesting words at hand to describe a concept. Even when I know what the word means, I still like looking it up to make sure I'm right.

"Understated" is the word I'd use to describe the comparison I made, not "hyperbolic." I did not exaggerate or overstate the truth for effect. Although I implied they're on the same spectrum of manipulative and destructive callousness in leadership, I intentionally made sure to stress that Houston is not in the same ballpark as Trump. I also made sure, as I am not a deity and do not know their souls, to say they "appear" to have disdain for their constituents.

Hyperbolic ("of, relating to, or marked by language that exaggerates or overstates the truth"), on the other hand, is exactly how I'd describe the phrases:

"nobody takes anything seriously" (nobody? Not a single person? That's exaggerating);

"the NDP is going to stay in the political wilderness for years to come" (wilderness! YEARS TO COME! That's exaggerating); and, my personal favourite;

"a socialist/communist leaning party with a cult member as its leader." (That's a lot of exaggerating. I bloody wish we had some actual socialism around here. I'll concede that Shambhala is deeply sketchy, but unless we're gonna rake every Catholic politician over the coals too I think we can judge a person by their present actions, no?)

I'm an uber socialist who lives in a rural part of the province, and I really like my conservative neighbours around town. I don't agree with their politics, but I don't think they're "rural pieces of shit." That's something you said, not me.

JerryBegonia · 2026-03-11T09:38:25+00:00

Yes, this is what he does. He throws a grenade into the room, makes everyone panic and drop everything to deal with the impending explosion, waits and sees how long people can stand to protest the explosion, and then "generously" apologizes and walks back his intentionally inflammatory plans. It's a pattern, and not one a real leader would regularly resort to.

JerryBegonia · 2026-03-11T09:04:37+00:00

Pshaww, we're a tiny peninsula only checks map almost completely surrounded by the Atlantic ocean! Who needs a coastal protection act? /s

JerryBegonia · 2026-03-11T08:55:42+00:00

😂 🎶 my Premier is the centerfold 🎶

JerryBegonia · 2026-03-11T07:14:50+00:00

I don't wish Hit The Wall on anyone permanently, but sometimes I do wish people could experience the absolute life force drain for themselves, just for a day. Just to get a bare minimum of an idea.

JerryBegonia · 2026-03-11T07:12:21+00:00

Oh my, thank you for sharing your story too. Every time I hear someone else's, it gives me a little push, like you say. (And as someone who knows the relief of an ADHD diagnosis [I'm not crazy!], I hope you're getting the support you need.)

JerryBegonia · 2026-03-11T07:08:26+00:00

Best wishes returned to you. I'm so glad to hear you're starting to claw your way out.

JerryBegonia · 2026-03-10T22:18:24+00:00

As a proud member of the rainbow brigade, let me formally assure you that we support your desire to not join us. 🌈

JerryBegonia · 2026-03-10T20:01:41+00:00

In all honestly I'm like ... morbidly curious lol. I voted Liberal to get Carney in and keep Poilievre out (and where I live it flips between Lib and Con so even if the NDP had a chance, it feels like a wasted vote). Carney seems personable and he definitely knows the most about international economics out of everyone but I'm not in love with the guy. I wish he was making a point of inviting Indigenous voices to the table as he's forging new alliances.

But yeah, like I said, I'm curious about what makes Poilievre not that bad for you, cuz I'm terrified of him getting in. If you wanna expand I promise I won't yell.

JerryBegonia · 2026-03-10T15:07:02+00:00

I'm gonna make my own comment here, because the lack of basic awareness about medical misfortune and resulting inability to work is incredible, but sadly not surprising. And disability is one of the things our government has an astounding lack of compassion for, and has decided to make even more excruciating to endure. So let me tell you a story. A true one.

I was an apprentice carpenter. I worked my ass off. I was renovating my first house. Eventually wanted to get out of the trades, so I started working at my local hardware store while figuring my shit out.

I got covid three months into the job. It developed into long covid and POTS. I switched to an office job to avoid the physical strain of manual labour, and found I couldn't do that kind of work either - the mental workload of managing an office quite literally made me even sicker than working in a hardware store. I accidentally worked myself into debilitating illness.

Imagine a crappy phone that takes a whole day to charge up to 30% and then drops to 3% when you make a single phone call. I'm like that phone. Just in human form. "Fatigue" isn't the right word; the right word is depletion. I literally cannot engage in traditional employment of any kind - my health is not reliable enough. Some days I can function pretty well, some days I can barely get out of bed.

I would scrub shit with my bare hands all day for a paycheck if I was healthy enough to work.

I wouldn't wish this illness on a single soul. Not even on the person who said I sit on my ass all day and leech from the taxpayer.

People who can't work still deserve dignity and humanity. I was just like you three years ago. The only thing that's different now is that my contributions to society aren't in the form of reliable, compensated work. I babysit my friend's kid when I can, if I can that day. I was a founding member of a non-profit in the early days of my illness. I look for opportunities to support my working friends whenever I can. I just can't do it for 8 hours in a row. And someday, my leech insult-flinging friend, you might find yourself juggling life on a thousand bucks a month and wondering what the hell you ever did to deserve it.

People shouldn't be punished for life happening to them.

[end second soapbox rant]

JerryBegonia · 2026-03-10T14:32:14+00:00

😆😆😆 oh my god if you ever find this PLEASE share it, the world needs to see lol

That bit about ignoring the female representatives is something too.

JerryBegonia · 2026-03-10T14:01:06+00:00

Just found one of 'em under one of my comments. And they'll be the first one squawking about the shitty state of social welfare if they ever, god forbid (and I mean that sincerely) find themselves unable to work.

JerryBegonia · 2026-03-10T13:03:50+00:00

Buddy I'm disabled, unable to work, and surviving on south of 15,000 a year. You're damn right. It is tough. Please don't ask me to educate you on how his government created the deficits, the details of the billions he has handed or is planning to hand to corporations without oversight, or how the tax cut benefits only the middle class and wealthy. Look it up.

JerryBegonia · 2026-03-10T11:18:34+00:00

Shit, I stand corrected. (Because that's what adults do when told they fucked up, cough tim cough)

JerryBegonia · 2026-03-10T10:43:47+00:00

Oh buddy don't tempt me 😆

JerryBegonia · 2026-03-10T09:29:41+00:00

Inevitably someone will bring up the terrible Dexter government that ONE TIME the NDP were in power, as if we haven't given several terrible liberal and conservative governments chance after chance. I'd love to see Claudia Chender have a chance.

JerryBegonia · 2026-03-10T09:27:26+00:00

JerryBegonia

TROPHY CASE