Opera and Chronic Illness: let's chat ME/CFS, feat. Jacqueline Ko

An ME/CFS patient since age six, opera singer Jacqueline Ko is here just in time for Myalgic Encephalomyelitis (ME or ME/CFS) Awareness Month to talk about what her life is like with disabling symptoms, unpredictable health, and why she raises her voice for the cause every single year!
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OPERA MARIPOSA ON KZbin: / operamariposa
MARIPOSA WEBSITE: operamariposa.com/schedule
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STREAM/DOWNLOAD JACQUELINE'S SINGLE, 'THE SINGER': linktr.ee/thesinger_jacquelineko
0:00 Intro
0:29 About Jacqueline
1:22 Jacqueline's ME/CFS story
2:23 What is ME/CFS?
4:14 "Coming out" as disabled in opera
5:45 Picking projects
6:16 Disability as an identity
7:11 Being disabled enough
8:08 Chronic illness and grief
9:12 Opera Mariposa: a safe space
10:17 ME/CFS' effect on the voice
12:19 Charity prize draw for the ME|FM Society of BC!
13:26 Where to find Jacqueline
13:28 Outtro
14:22 Bloopers!
Find me on Instagram!
/ robinhahnsopran
Find me on Twitter!
/ ​​
Buy me a Ko-Fi!
ko-fi.com/robinhahnsopran
AMAZON AFFILIATE LINKS (thanks so much for clicking!)
My lipstick: amzn.to/3SVOWpM
My eyeliner: amzn.to/3R93rVT
Microphone: amzn.to/47pbHqp
Ring light: amzn.to/47pbJi1
MUSIC:
Music: www.orangefreesounds.com/
Music: mixkit.co/​​
#MECFSAwarenessMonth #MECFS

[@robinhahnsopran]

What do you want to win most?! Drop it here!

[@AidenFeltkamp]

Thank you so much for addressing the important things, like the grief that comes with chronic illness and the specifics of how the operatic industry discriminates against disabled artists. It's really helpful to watch this, to hear your stories, and to feel seen.

[@robinhahnsopran]

I'm so glad to be able to create a space that's helpful

[@heidiklassen6429]

Wonderful, delightful! You 2 are the best!

[@robinhahnsopran]

Thank you so much, Heidi!

[@carolinespigelski8888]

you 2 are awesome!!! I am suffering from post-viral bacterial infection auto-immune issues too and can relate to your stories soooo much....thx for sharing...you are speaking for so many xxx

[@JibberJabJones]

all of this really resonates. i’m not diagnosed yet, but i am on disability for other things. it’s very hard indeed getting a diagnosis for CFS on the NHS in the UK. i also sing. i’m currently trying to put the finishing touches to an album, and the song i have to record is very high indeed, with sustained, belted notes in mix voice. i can do it when i’m not exhausted. but right now, i can hardly sing a note. i’m having to bide my time and just trust a little energy will eventually return-enough even to just start the process of practicing the part. it’s scary. i’m always afraid the notes won’t return to me, this time. winter time makes the symptoms so much worse.

[@paulmoore6175]

#DELIGHTFUL, thank YOU. I'm now bed bound 21h / day with MECFS & grew up surrounded by #opera. DON'T EVER STOP!

[@robinhahnsopran]

Thank you so much for spending your time in my corner of the internet! :)

[@UnDead483]

Now I find myself wondering... Having sung with both of you, how many times you were in serious pain/distress while we were on stage but were such BAMFs that I couldn't tell. It's both inspiring and a little destabilizing lol

[@robinhahnsopran]

Ha! :P I know Jacqui's experience is a little different than mine, and she is often in a lot of pain or disress onstage, but for me I honestly... stop noticing much in my body when I'm full of adrenaline? It's a super-poor-internal-proprioception thing. I don't tend to notice the pain of a subluxation onstage or anything until after curtain call and the adrenaline is wearing off. :P

[@lindsaygillis6812]

Thanks to you and Jacqueline for sharing your experiences! I always love hearing from you two ❤️

[@robinhahnsopran]

Thank you so much! :)

[@thetoycollectorofseville6428]

I'm actually writing an opera based on a movie about two teenagers with chronic illnesses. If you want to know the name of the movie it's "Five Feet Apart."The libretto was written by Massimiliano Fusai in Italian.

[@robinhahnsopran]

I've never seen Five Feet Apart, but this sounds like a super-cool project! :)

[@thetoycollectorofseville6428]

@@robinhahnsopran What's your email? I'd like to send you the libretto. If you read it over, can you somehow give me some ideas for appropriate music to go with it?

[@robinhahnsopran]

@@thetoycollectorofseville6428 Hi! I'm happy to offer consultation work, but I do have to tell you I do charge a fee for it, depending on the scale of the work itself. If you send an email to my email listed on my Instagram (link in the description of this video - sometimes KZbin gets grumpy if you write email addresses out!) and let me know what kind of thoughts you might be looking for, I can provide a quote. :) Thanks!

[@thetoycollectorofseville6428]

@@robinhahnsopran I would pay for it, but I do not know how to pay online yet. I do have the money though.

[@robinhahnsopran]

@@thetoycollectorofseville6428 No worries! I can lead you through setting up a Paypal in an email. It's pretty easy!

[@kagitsune]

These types of videos are so good! I learned so much!

[@robinhahnsopran]

Thank you so much! Glad you feel they’re useful! 💖💖💖

[@russellhirsch2761]

That vacation will be mine! Mwahaha!

[@nicmiskin8506]

Is there a risk of exacerbating or worsening a condition by pushing through an especially hard day? Something like performing through a severe asthma attack? Or is it more a matter of borrowing spoons from the next day or so?

[@robinhahnsopran]

Excellent question! The answer: it depends on the person, the amount of spoons, and the condition. In ME/CFS in particular, borrowing too many spoons can be dangerous; PEM means there is a direct line between energy output and crashing later, so too much “pushing” can lead to extremely adverse health effects - even organ failure. I, however, experience chronic fatigue as a symptom of EDS, but don’t have ME. There are a few distinct differences here in what I experience: 1) I don’t always crash if I run out of spoons and borrow them from the next day; and 2) I tend to have a more immediate sense of when I’m running into a danger zone and need to stop an activity or risk a crash, rather than feeling it later - because the malaise I feel isn’t necessarily POST-exertional. A really good example of the difference is this: hile someone who experiences fatigue as a symptom might benefit from things like exercise (in EDS, it can be really helpful to strengthen muscles to help stabilize wobbly joints, for example), people with ME/CFS, particularly if their case is moderate to severe the way Jacqui’s is, could actually be risking future crashes if they even attempt it. So if I’m doing well, I exercise, and if I’m not, I rest and wait until I do better - but someone with ME may not be able to try. Obviously, this isn’t linear. Someone with mild ME May be able to do gentle exercise, whereas someone severely affected by EDS may not be able to get out of bed. If you could take severity out of the equation, though, that would be the difference. Hope that helps!