Olenka Sayko

Ukrainian-American. Theater/film/music/book lover. Former arts finance girlie. Left-ish Libertarian-ish. Life on pause due to disabling #LongCOVID.

[Olenka Sayko @coco_chatel]

Ok, real talk: I am not a doctor so I cannot advise you about risky compounds that haven’t had many in-human trials like experimental peptides. I’m happy to experiment on myself and report outcomes of my particular n=1 situation so as to share ideas for people to explore for care

[Olenka Sayko @coco_chatel]

@rachioella @Cruel_world01 @Illusionist999 I don’t find symptoms to be a useful way to evaluate what medicine is for. It’s better to thing in systems and hypotheses with these illnesses. The same symptom can be caused by numerous different mechanisms.

[Olenka Sayko @coco_chatel]

Update: another day of feeling pretty good. Probably the best I’ve felt since Fall 2023.

So obviously the first thing I did was call one of my best friends and gab for two hours. To someone who isn’t sick, this probably doesn’t seem like a big deal, but it’s everything to me.

[Olenka Sayko @coco_chatel]

I had my 3rd Pemgarda infusion on Wed, but my first since beginning regular high-dose IVIG in May of this year. I felt terrible on day 1 but yesterday felt better than baseline and today feel pretty darn good. Almost normal. And all I can say is I feel suspicious. #LongCOVID

[Olenka Sayko @coco_chatel]

@Cruel_world01 @Illusionist999 I’ve been on high-dose IVIG for 5 months but haven’t done plasmapheresis. IVIG has been helping me substantially.

[Naomi Harvey “PhD Witch” #WearAMask @Naomi_D_Harvey]

My heart goes out to Beth for doing this. I really hope the payback doesn’t last too long. It’s a very sympathetic article and she articulated her points so well 🩵

[Saloni @salonium]

Lots is happening in the world of clinical trial reform!

I decided to put together a list - all of this was announced since June - and shared some thoughts:
https://t.co/LalrOhwFP5

[Emily Johnson (is on Mastadon and Bsky) @emily_rj]

In 3 months, I’ll get another major neurosurgery: Craniocervical Fusion, Extradural
Decompression of the LLCT/MTH, Bilateral C1 Tubercle Resection

This procedure will be out-of-state, costly and have a long recovery

Please donate and boost! Ty

https://t.co/lts1LL5ocX

[Olenka Sayko @coco_chatel]

@Riemerville I love this for you. Hope this means you can enjoy future roadtrips!

[Olenka Sayko @coco_chatel]

@Dangerclose001 Why should those be the only available narratives? A person can be determined and profoundly limited. They can persevere and need accommodations. They can be resilient and unable to overcome particular impairments.

[Olenka Sayko @coco_chatel]

I think there’s something particularly fucked up about putting “Born with Cerebral Palsy, he never – ever – allowed that challenge to be an excuse for anything” in a tribute to a disabled person who died by s*ic*de.

[Culture Crave 🍿 @CultureCrave]

Bryan Cranston pays tribute to RJ Mitte

“I’m in deep despair as I write this tonight. RJ Mitte, my sweet son on 'Breaking Bad' has died. I met him when he was only 14 years old when he was cast as Walter White Jr., a part he played with such joy and enthusiasm. Born with Cerebral Palsy, he never – ever – allowed that challenge to be an excuse for anything. He met the demanding shooting schedule head on with great determination"

“Always listening to the advice that his TV parents (Anna Gunn and myself) gave him – but being a teenager, sometimes mischievously ignoring the counsel in order to learn the hard way… He was one of the stars of a hit TV show – but still a kid. That kid was pretty raw when we started shooting the pilot in February of 2007, but little by little we watched him grow into a really fine actor. He parlayed his experience on the show to be a vocal advocate for performers with disabilities, and was the head of a philanthropic organization with a focus on helping the disabled community. All that promise and potential now is such a loss"

“It is especially devastating to hear that he took his own life,” he wrote. “Why? We were texting each other just a few weeks ago – figuring out when we could meet for lunch. I don’t know if that lunch would have changed his future… But I do know that I loved him, and thoroughly enjoyed being with him throughout the years on the series, and after the spotlight on 'Breaking Bad' dimmed… I’ll miss you, son"

[Olenka Sayko @coco_chatel]

@blackfire1118 @george_oppel No harm, no foul. I’m really sorry you’re going through such a difficult time. Do you have people around you who can support you through this? Hang in there.

[Olenka Sayko @coco_chatel]

@UraniumGreen @BenMonroe1 Likewise, celebrating disabled people for never making “excuses” can reinforce the expectation that limitations ought to be overcome rather than accommodated. The distinction is between an individual compliment and the broader social norms that such compliments can reinforce.

[Olenka Sayko @coco_chatel]

@UraniumGreen @BenMonroe1 For example, praising employees who work through illness doesn’t explicitly criticize those who take sick leave, but a culture that consistently celebrates working while sick can nevertheless stigmatize necessary rest.

[Olenka Sayko @coco_chatel]

@originaljonz @BenMonroe1 I can recognize a grieving person’s loving intentions and respect their relationship with the deceased while questioning the broader implications of describing disability-related limitations as potential “excuses.” Those positions aren’t mutually exclusive.

[Olenka Sayko @coco_chatel]

@originaljonz @BenMonroe1 Yes. My substantive concern would remain the same, regardless of whether the speaker was RJ’s father, friend, or colleague. The relationship might affect how and where I expressed that criticism, but it wouldn’t change the cultural assumptions embedded in the language.

[Olenka Sayko @coco_chatel]

@slater9964 @arkinobrien But an individual’s embrace of a resilience narrative doesn’t necessarily make it beneficial when generalized to all disabled people. We can respect his choices, understand the context in which they were made, and still question the broader expectations that shape them.

[Olenka Sayko @coco_chatel]

@slater9964 @arkinobrien Disabled folks can embrace a narrative about their own experience while that same narrative creates problematic expectations when generalized to all disabled people. Personal identification with a narrative doesn’t necessarily establish that narrative is universally unproblematic

[Olenka Sayko @coco_chatel]

@slater9964 @arkinobrien To be clear, I don’t see this as a repudiation of RJ at all. Disabled people often face impossible choices about how to present themselves, especially in unforgiving industries like entertainment. RJ was entitled to embrace whatever narrative reflected his life & experience.

[Olenka Sayko @coco_chatel]

@lesserwaltjr Anyway, I appreciate you taking the time to engage with me on this, and I’m glad we were able to find some common ground even if we don’t agree on everything. Wishing you all the best! 🖤

[Olenka Sayko @coco_chatel]

@lesserwaltjr Twitter is a microblogging platform with character limits. My opening tweet introduced an argument that I developed and qualified throughout a thread. Critiquing the opening in isolation while ignoring the subsequent analysis is not engaging with the argument in its entirety.