Steve Easterbrook
Two years ago, I experienced Sudden Sensorineural Hearing Loss (SSNHL), and am now almost completely deaf in one ear. This year, one of my colleagues had the same thing. Now I see there's a study out showing a strong correlation between COVID and SSNHL.
I guess that explains a lot. But, shit.
BTW If you find you suddenly lose hearing in one ear, get yourself to a specialist *immediately*. You have a 24-36 hour window to save your hearing before it becomes permanent.
https://www.thelancet.com/journals/eclinm/article/PIIS2589-5370(24)00338-9/fulltext
Aug 2, 2024 at 2:26amWeb
Show threadSteve EasterbrookAug 3, 2024
What’s it like to suddenly lose hearing in one ear, you ask? The other ear works fine, right?
First, it’s a hidden disability. Nobody notices, unless I tell them, which can feel awkward and embarrassing. Took me a long time to get over that.
With only one ear, I’ve lost all ability to detect where sound is coming from.
That means I can’t filter out background noise. I can have a perfectly normal conversation in a quiet environment. But if there’s background noise it gets hard rapidly. 1/n
Show threadSteve EasterbrookAug 3, 2024
So I won’t be able to hear you in busy restaurants, urban streets, anywhere with background music, crowds, parties, or anywhere where several people are talking at once.
Teaching is now really difficult. We’ve installed air purifiers in all our classrooms, but they make enough of a hum that I can’t hear the students very well. I like to use a lot of breakout discussion in my classes, but I can’t hear anything any of them are saying if I do that.
2/n
Show threadSteve EasterbrookAug 3, 2024
It’s hard to find quiet restaurants, although I’ve discovered if you eat earlier in the evening it tends to be quieter. But why do they all need background music? Most wont even turn it down when I ask.
Academic conferences are particularly hard. The talks are fine. The rest is not. For me, the value of a conference is in the informal conversations in coffee breaks, and over lunch or dinner. I can’t do that now.
3/n
Show threadSteve EasterbrookAug 3, 2024
The first conference I went to after my hearing loss, I signed up for the banquet, and sat with a group of people whose work I really wanted to hear about. There was a live band playing throughout the meal. I couldn’t even hear the person next to me who was talking into my good ear. And I couldn’t explain why I was being so antisocial.
I left halfway through and walked back to my hotel in tears.
Ironically I’d been to a panel session earlier that day about making the field more accessible…
4/n
Show threadSteve EasterbrookAug 3, 2024
So I’ve learned a lot about dealing with a hidden disability. Nobody notices your disability unless you tell them, which is usually socially awkward.
Then they’ll make all sorts of wrong assumptions about it.
Some then make a fuss over it, which can be even more embarrassing.
Some get more embarrassed themselves as if it’s their fault I can’t hear them.
I understand these reactions - they’re meant well.
But they don’t help.
It’s best just to ask me if I need any accommodations.
5/n
Show threadSteve EasterbrookAug 3, 2024
BTW one small thing you can do to help. Download the SoundPrint app, and use it to take a noise measurement every time you visit a restaurant. Together we can build a useful crowdsourced map of restaurant noisiness.
Show threadGeorg WeissenbacherAug 3, 2024
@steve Given that that my screaming toddler is usually with me when I visit a restaurant, my samples might be rather useless.
Show threadanlomedadAug 4, 2024

@GeorgWeissenbacher @steve

Haha. You could always hand your phone to the restaurant staff to record your screaming toddler for the mapping up from a safe distance.

Show threadIdris 💙Aug 3, 2024
@steve
From someone who has been deaf in one ear since the age of 5, thank you.
Show threadBrian DearAug 3, 2024

@steve

I like the NIOSH Sound Level Meter app for iOS. Simple, a little clunky-looking, but gets the job done without ads, monetization, or snooping.

Show threadRyan RandallAug 3, 2024
@steve Thank you so much for sharing all this!
Show threadmirabilosAug 3, 2024
@steve oh, that äpp sounds useful for all kinds of people who like quieter places (also, supermarkets, etc.)
Show threadmirabilosAug 3, 2024
@steve except for its use of Fakebook, which is thankfully optional
Show threadStephan MatthiesenAug 3, 2024

@steve Well, we autists had always that problem that networking at conferences is almost totally impossible because opportunities are exclusively restricted to "icebreakers", coffee breaks and banquets.

Why scientific conferences don't, as a standard, include any of the well-known creative ways of enabling interaction, is really hard to understand.

Lot of careers were cut short because conferences don't accommodate this.

Show threadRobotistryAug 3, 2024

@StephanMatthiesen @steve I used to network at poster sessions and go up to speakers after their talks and have conversations in the hall while talks were happening (which is actually an excellent thing to do - a quiet environment and opportunity for more in depth discussions). Receptions were more of a "Hello random person in the queue next to me! What do you think of the conference so far? What are you here for / interested in?".

Not since Long Covid, though.

Show threadRobotistryAug 3, 2024
@StephanMatthiesen @steve I've actually volunteered to be Accessibility Co-Chair for a new conference next year. What kinds of things should we be considering that would help you?
Show threadStephan MatthiesenAug 3, 2024

@robotistry @steve
Big question. First of all, it's a good sign when a conference actually has people thinking about accessibility. That's the first step.

It depends on the kind and size of the conference, so it's hard to give a general answer.

One suggestion: If you have an icebreaker, organise it with an communication activity, don't just put 200 people in a room with wine (then you'll get groups of friends chatting intensely while the autists hide in the corner).

Show threadRobotistryAug 3, 2024
@StephanMatthiesen @steve It's going to be fairly small, and we're deliberately trying to get people from diverse specialties together, but I don't think there are plans for an icebreaker (as opposed to the banquet/dinner, which I'm planning to avoid for long covid reasons). I'm hoping we'll have lots of panel discussions with different viewpoints represented so people can ask questions and have opinions and arguments during breaks and lunches.
Show threadA-Dub 🥝Aug 3, 2024
@steve as someone with three invisible disabilities each requiring quite different accommodations, i really feel you on this thread ❤️
Show threadan_believableAug 4, 2024
@steve Thanks for this good describtion!
I have a moderate low- and mid-frequency hearing loss on both sides and therefore have very similar problems to yours. Sometimes people even don't believe me, when I tell them, what I can hear and what situations are difficult or even a No-Go, just because they can't see it and I can follow conversations well in a quiet environment - and if the people I'm talking to are no more than 1-2m away from me.
I was diagnosed in the pandemic, but I don't know if there is a direct connection, probably it's more genetic in my case (because both-sided and does not affect high-frequencies).
I was teaching, too, but I had to stop doing that because of my hearing loss. I'm currently reorienting myself towards social work.
Show threadRalph058 (S/he/it) AF4EZAug 3, 2024
@steve I've had a loss of high frequencies. One ear is better than the other. I can't understand people in all the circumstances you mentioned. One of things I put on my "if I win the lottery" list is to sue a big chain for their background music level. Locally, it is the Walgreens. They have the "music" blaring through a speaker right above the registers. I have written them about it and they never even responded. Although, the local CVS has background music...it is in the background and not the foreground.
Even with two hearing aids, if there isn't GOOD sound reinforcement, I might as well not go to a conference.
Show threadSteve EasterbrookAug 3, 2024
@Ralph058
Oh yes, in large stores, if the person at the checkout asks me anything, I can’t hear it. Especially as they’re now usually behind a plexiglass screen.
Show thread⁂ Panda | 서판다Aug 4, 2024

@steve Your comments about attending the conference reminded me of this post by @andrew_hugill

https://www.autisticprofessor.uk/2022/09/social-isolation.html?m=1

Social Isolation

A blog about autism and my life as a late-diagnosed autistic Professor.

Show threadNick has moved to MathstodonAug 3, 2024

@steve I realize that you may have no control over what air purifiers are used, but in case it is useful to you in the future I wanted to point out that I've found these PC-fan-based HEPA air purifiers to be surprisingly quiet:

https://www.cleanairkits.com/

Corsi Rosenthal Box | Clean Air Kits

Clean Air Kits are super efficient air purifiers built simply from banks of silent PC pressure fans and 3M Filtrete virus+allergen filters. Quiet enough to leave on always, powerful enough to protect from airborne pathogens like Flu, RSV, Strep, & Covid-19

CleanAirKits
Show threadmmalcAug 3, 2024

@internic @steve

I have quite a few of these, in part precisely because they're quiet.

Show threadMx VerdaAug 3, 2024
@internic @steve tyyyyyy this was exactly what I’ve been looking for. I might invest in one next month and hope next pollen season is more bearable
Show threadNick has moved to MathstodonAug 3, 2024

@MxVerda I have one of the "luggable" models. Since you're thinking of buying one, some thoughts for your consideration:

* It only runs at one speed, but that's an intentional choice to make it quiet enough at that speed that there should be no reason to turn it down.
* Some assembly required. It doesn't take any specialized skill, but it is a little fiddly. You can get it pre-assembled, but then the shipping is a lot more.
* Because it is a little DIY and air filters form the two largest sides, it's not as sturdy as many commercial units. But I found it sturdy enough with the addition of the mesh filter guards.
* Some models (like the luggables) are much easier to carry than most commercial air purifiers, so it's vastly superior if you sometimes need to take it somewhere.
* Many models are a bit expensive compared to popular commercial units. But I think you save significantly on the cost of replacing filters, since it just uses a standard size for home HVAC, so I'm guessing that makes up for the difference in up-front cost eventually.

@steve

Show threadStarbeamrainbowlabsAug 3, 2024
@steve Oh gosh! Yeah, I'm #ActuallyAutistic and filtering background noise is hard enough with hearing in 2 ears. You have my sympathy!
Show threadSteve EasterbrookAug 3, 2024
@sbrl
That’s a good point. Having raised an #ActuallyAutistic kid, I’m pretty sure I am too. Noise was always a problem even before my hearing loss. I wonder if there’s a compounding effect.
Show threadStarbeamrainbowlabsAug 3, 2024

@steve I would not be surprised if it was a compounding effect.

I wonder if someone has done study on this before?

Show threadMike GerdtsAug 3, 2024
@steve what you describe sounds a lot like the hearing loss I have in one ear. Funny thing is that I didn’t know I couldn’t hear much in that ear until I started a job where I needed to use a monaural headset. Even with the volume all the way up I could barely hear it. Switch ears and it was fine. ENT said this was likely due to a virus. Absent a regular test like this I don’t know how some can catch it soon enough. A hearing aid helps a lot, but a TV or music during conversation is challenging.
Show threadWolfgang Müller (DE:er/EN:he)Aug 2, 2024
@steve My sympathy.
Show threadJamie McCarthyAug 2, 2024

@steve Shit. Did not know this.

Do you have any links that can help me understand why it’s urgent to get to a specialist quickly? This is the first I’m hearing of this.

Show threadSteve EasterbrookAug 2, 2024
@jamiemccarthy
Basically, it's a virus attacking the nerve that connects your ear to your brain. There are three emergency treatments that can reverse the damage. None are 100% effective, but all lose effectiveness if not done within a few days of onset. I had all three treatments, but it was too late for me. They are: oral steroids; steroids injected directly through the ear drum; immersion in an oxygen chamber
See more here:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8855894/#:~:text=Sudden%20sensorineural%20hearing%20loss%20(SSNHL)%20is%20an%20otological%20condition%20that,up%20with%20a%20hearing%20loss.
Sudden Sensorineural Hearing Loss and Why It’s an Emergency

This review shows the importance of sudden sensorineural hearing loss (SSNHL) as a significant cause of hearing loss that often goes under-recognized, especially by primary care physicians. Contrasted with conductive hearing loss, SSNHL involves ...

PubMed Central (PMC)
Show threadMike McCaffrey Aug 3, 2024

@steve @jamiemccarthy The same thing happened to K.flay, but the doctors just shrugged and sent her home without treatment. Hopefully, the medical industry is getting their act together.

https://youtu.be/TNwfVdVhStc?si=s4E4rtaK4i8Fxfnw

- YouTube

Enjoy the videos and music you love, upload original content, and share it all with friends, family, and the world on YouTube.

Show threadDave C.Aug 3, 2024
@mikemccaffrey @steve @jamiemccarthy I had something similar happen to me. Had some kind of bug that impacted my ear. Much later I went into the doctor about how that fluid in the ear never cleared. Turns out I had permanent hearing loss in that ear now. It has slowly improved over time. No idea if it will ever fully recover.
Show threadSteve EasterbrookAug 3, 2024
@mikemccaffrey @jamiemccarthy
I love K.flay’s comment:
“on the plus side, i am now 15% more handsome, 30% smarter, and 50% better at Metallica riffs.”
Yeah, me too!
Show threadthem#ticAug 10, 2024
@steve @jamiemccarthy Phew, I wonder how the emergency duty here would deal with a potential case.
Show threadJ.H.NoyesAug 3, 2024

@steve A quick takeaway from that paper is that 1:800 infected young adults suffers hearing loss as a consequence of infection. If someone catches Covid once a year between the age of 20 and 40...

Letting It Rip clearly is not working. Even if it were only a transient illness--wishful thinking; it is chronic--the attrition alone is catastrophic.

Show threadOscelotAug 3, 2024
@Texan_Reverend ping for you
Show threadSci-Fi GirlAug 3, 2024

@steve

Didn't that happen to Paul Simon? 😯

https://www.thetimes.co.uk/article/paul-simon-losing-my-hearing-and-why-im-writing-songs-again-3c65mms7n?ts=1684867178524

Paul Simon: losing my hearing — and why I’m writing songs again

In a poignant interview at home on his ranch, Paul Simon, 81, reflects on mortality and his success with Art Garfunkel — and reveals the inspiration for his remarkable new album

The Sunday Times
Show threadJohn GordonAug 3, 2024
@steve What is the intervention that prevents loss in the 48h? If it’s brain stem injury as some had speculated would steroids work?
Show threadSteve EasterbrookAug 3, 2024
@jgordon
Steroids.
Injected directly through the eardrum if necessary.
Which is … unpleasant.
My family doctor knew what to do (most don’t, apparently), but it was during the height of the pandemic and it took three days before he could see me. My first dose of steroids brought my hearing back for a day before I lost it again. It never came back after that.
Show threadJohn GordonAug 3, 2024
@steve I wonder how well that works …
Show threadGraceCAug 5, 2024
@steve @jgordon Was it caused by covid?
Show threadWideEyedCurious 🇺🇸 💙 🇺🇦 & 🇨🇦Aug 3, 2024

@steve I had this happen before the pandemic (Feb 2017) to my left ear. It’s really weird to suddenly lose hearing when you’re awaken when it happens.

If COVID increases the likelihood of it occurring, that might be the key to determining why it happens at all (assuming you don’t have a brain tumor, a known injury to the ear, or a prior existing autoimmune disease).

Show threadmyxAug 3, 2024
@steve anecdote: I've had this happen twice, in the same ear, in 2021; both times my hearing came back slowly over 36-48 hours. I wasn't able to see an audiologist quickly enough, but follow-up MRIs found nothing interesting, and it remains undiagnosed. I've also never had covid, as far as I'm aware (and as far as tests can disprove). I was awake and alert on both occasions, and it was a pretty weird experience!
Show threadGabriel PettierAug 3, 2024

@steve hm, my dad (definitely not a young man anymore, he's from 1959), had some sort of weird ear infection that permanently reduced his hearing on one ear in 2020, we didn't think it could be related to covid back then, but that's a strange coincidence.

Anyway, i got him a bone conduction headphone (meant for people doing sports, but with some accessibility features), and he told me that gave him a more "centered" sound again. I didn't have more feedback since but i could ask how it went.

Show threaddr_barnowlAug 3, 2024

@steve

I had Bell's Palsy. Anecdotally, rates went up. Caused by ... swelling of a nerve as it passes through your skull. Same treatment, oral steroids within 36 hours of onset.

Show threadOctavia Con Amore  Succubard's LibraryAug 4, 2024
@steve there were reports of this happening most often during the Delta wave, and as a professional musician, this is truly, truly terrifying 
Show threadAaron MasseyAug 4, 2024
@steve Sorry to learn that you have lost your hearing in that ear. I’ve been an admirer of your work for years, mostly as a lurker. Just thought I would take this opportunity to say thanks for everything you’ve done and for your boldness in sharing your disability with us.
Show threadRandom WeirdoAug 4, 2024

@steve This is shitty. Sorry you're experiencing this.

Might have been what happened to our younger son when he was ~5. We went to the ER immediately, they couldn't find anything, but sent us to ENT who was convinced that he was making it up (too young to have tinnitus or hearing loss). But as it didn't get better, we saw some specialists. No idea why, but he had lost nearly all hearing on his left ear. Got a cochlear implant 3 years ago, which helps a lot with all the problems you describe.

Show threadLrt_curieuxAug 4, 2024
@steve
I experienced the same problem in 2015. I have been to a doctor on time to get my hearing back, well, most of it.
It is not new nor uncommon, from what I understood, and there are treatments if you move fast, at least in France.
And yes, it was a very difficult and painful experience.
Show threadDan C. 🏳️‍🌈Aug 4, 2024
@steve I'm convinced this happened to my mom, even though she hasn't had a documented case of COVID. I'm sure an asymptomatic case could have the same result.
Show threadPeaceNick🇨🇦Aug 5, 2024

@steve

Hi. Ran into this on my timeline.

Now 70 year old had the same symptoms and was similarly diagnosed in 2021 Never (so far) tested positive for COVID but have always had suspicions about the timing. I am sad at what the loss of hearing has done , but given the potential other outcomes of the virus, I am not going to complain.

A second bout occurred less than a year later and I quickly called a physician who prescribed the appropriate steroid. My hearing returned to + level.

Show threadLeslie 🇺🇸🌻🌈 🌊Aug 6, 2024
@steve I briefly (a few weeks) completely lost hearing in one ear. I wound up attributing it to overuse of immodium. 🤷‍♀️. Hope you have a good resolution. 💔
Show threadHiisikoloartAug 6, 2024

@steve
I got ear infection to both ears from covid, but I was lucky it did not leave me deaf...it did, however, leave me in pain 24/7 and doctor's have no idea why. CT scan shows nothing, looking into the ears through ear canal and throat showed nothing.

(No swabs taken, also they don't believe me when I said it started from covid...they plain the pain on longer than normal bones "making my jaw tense" in the area which makes zero sense since the these are clearly pains in the inner ear.)

Show threadDaniel DickisonAug 10, 2024
@steve i had a similar thing recently: low frequency hearing loss in just my left ear starting a few weeks after i had covid. Steroids didn’t help and it seems to come and go, so ENT thinks it’s probably Ménière’s disease. I can 100% relate to the social awkwardness of not being able to hear convos in loud environments. It’s also super disorienting in general when the symptoms start.