Those of us who are still Covid conscious - especially those with disabilities who are trying to keep safe in a world willing to toss them by the wayside - are having a rough time.
It’s important to share the wins when they happen - and I had a healthcare win recently! 🧵 /1
This was my first trip to the hospital since mask mandates were dropped (I’m incredibly fortunate to live in a city that kept them mandated for 4 years) and I was quite worried that I would be judged for still wearing a mask /2
I’m high risk for a multitude of reasons - not the least of which being that I’m immune compromised and mild colds have put me in the hospital. I’m mostly housebound and was isolated even before the pandemic. Which means my highest risk activity is seeking medical care. /3
I’ve always said that I find it appalling that people make tremendous sacrifices to keep themselves and their families safe - only to end up infected in the hospital where they had no choice but to go. Patients should not be infected in healthcare settings. We can do better. /4
Threat of infection causes patients a great deal of stress & anxiety - because no one should have to choose between care and Covid. No one should worry they will be psychologized for masking, or treated by someone who knows they’re sick and won’t wear a mask to protect others. /5
It’s a dark time for those who have to rely on the medical system on a regular basis - so I was pleasantly surprised when my visit went smoothly.
I was fortunate enough to have a man available to accompany me - and we both wore headstrap N99s and eye protection. /6
He knew almost nothing about my condition or why I was in the hospital - but his role was to assert to staff that I required them to mask. Many disabled patients - especially women - have noticed that having a man request masking results in less push back. /7
To our great surprise - he didn’t even have to ask! Everyone who saw me immediately put on a mask. The receptionist, a few nurses, a tech and the doctor. I didn’t receive any dirty looks, sighs or comments about how I must be “anxious about COVID.” /8
In fact one validated our choice to wear respirators by saying that with the state of my health we were doing the ‘absolute best thing we could do’ by wearing respirators.
They were wearing a surgical so it was a bit discombobulating - but still great to have the validation /9
The air quality was also excellent - with CO2 not going above 600. This was a great comfort since most staff who masked for me were not masking overall - so there could easily have been covid left lingering in the air. /10
I saw a number of N95s on other patients - and each one gave me a knowing smile and nod. It felt like a secret handshake from across the room as we braved the dangers of a hospital environment during an airborne pandemic together. Solidarity to each and every one of them /11
Obviously there’s things I would change. I still firmly believe masks should be mandatory in hospitals and that N95s should be provided at the entrance in lieu of surgicals. Many people can’t afford respirators - and money should never be a barrier to safe healthcare. /12
I’m also aware that my privilege in having a man to accompany me and not being visibly marginalized probably played a role in how well it went - it could be very different for a person of colour or someone without an advocate. /13
We still have a lot of work to do to make hospitals safer - but I want to take a moment to celebrate the wins when they come. The lack of pushback, the mask mirroring & the validation that respirators were a good choice for someone in my situation were all BIG wins. /14
Now if we can just get people (especially HCWs) to realize that Covid is a threat to everyone - and not just people with risk factors like mine - we will start to see change. Let’s keep sharing stories & masking in solidarity and hopefully we save a life. /end
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I’ve had a lightbulb moment about why it bothers me when people say my stories are made up.
I’m a writer. It’s what I always wanted to be. I was fortunate to do it for a living for 15 years.
🧵 on sharing our stories, gumption, never backing down & how writing saved my life /1
Ever since I was old enough to read and write - writing has been my way of processing the world. Whether it be a diary, journal, letters to penpals or professional articles - when something bad would happen I found solace in writing about it. /2
My heroes growing up were almost all writers or literary heroines - strong women with gumption who bucked societal norms and refused to take crap from anyone. Refused to be told how to think, what to feel, who to love or what to do. They inspired me. /3
If you have chronic illnesses like POTS, MCAS or Long Covid and struggle with holter monitors… I’ve got some tips!
I’m currently doing a 7 day monitor to assess my electrical abnormalities in addition to monitoring my POTS.
They aren’t fun - but can be made easier 🧵/1
The first time I did a holter monitor I was shocked by how raw and broken my skin was at the end of it. I had hives, welts and severe burns. This didn’t align with the experience of “most” people who need to do this test. /2
When I was diagnosed with MCAS I learned that many of us have extreme sensitivity to adhesive & suddently my holter monitor struggles made sense!
Unfortunately for me - there were a number of 28 day monitors in my future - so I set out to learn how to minimize my reactions /3
When you’re disabled - keeping yourself alive is a full time job. Managing doctors appts, fighting for safe & competent healthcare and living in a world that isn’t made for you is exhausting.
Since we entered the “you do you” phase of COVID… it’s become nearly impossible. 🧵/1
Once we dropped all mitigations (and most data & reporting) people like me became increasingly squeezed out of society. I’m immune compromised & have been hospitalized from a cold. I can’t risk repeated Covid infections. /2
Unfortunately - the majority of society doesn’t see the value of protecting the vulnerable anymore. And due to an incredible lack of transparency & honesty from governments and public health - many people don’t realize that they too are vulnerable to covid. We all are. /3
A few months ago a “friend” told me that he felt disabled people should be denied access to healthcare so “survival of the fittest” could happen faster.
That people like me are the reasons he - a non disabled cishet white man - can’t get ahead.
How did we get here? 🧵/1
First of all - I’m fortunate that this is someone I can walk away from and I don’t have to tolerate this behaviour going forward.
That said - I had previously known this man to be relatively kind, tolerant and gentle… so I was taken aback by the hatred he put on display /2
Hatred towards disabled people is nothing new - but lately it seems far more people are willing to not only say the quiet part out loud… but to shout it from the rooftops.
It’s a terrifying time to be disabled. It’s not just the threat of Covid - it’s the threat of eugenics /3
Lately I’ve had bad GI issues that have worsened my cardiac baseline & left me wrecked.
A few nights ago I was laying on the bathroom floor feeling sorry for myself when I remembered a lesson from a meditation teacher.
A 🧵 on mindfulness, privilege & failed covid response /1
Years ago I took a meditation course in an attempt to learn how to better handle the pain and suffering that comes with chronic illness.
I assumed I would be bad at it because I’ve always had a very “busy” brain and difficulty sitting still. /2
One day my car broke down so I walked to class. By the time I arrived I was tachycardic, sweaty and dizzy. I grumpily said “I can’t believe I had to walk here - now I’m going to be sick all night.”
The next thing I know a woman in a wheelchair comes around the corner. /3
Biden stepped aside with a statement touting that he “overcame a once in a century pandemic”…. While sick with the virus he claims to have beaten.
800,000 Americans died of Covid during his Presidency - millions more were disabled.
Why does he think he beat it? 🧵/1
I’m not American - I generally avoid weighing in on American politics because it’s a hot mess & I don’t have a horse in that race.
But Covid is a global issue - and I was flabbergasted when Biden once again asserted he defeated a virus that is still killing people every day /2
I understand wanting to highlight the accomplishments he had while in Office - but how can he possibly continue to say the pandemic has been “overcome” when he’s literally sick with Covid for the third time? /3