Whitney Dafoe Updates

From 9 April 2026:

https://www.whitneydafoe.com/mecfs/?post=in-the-hospital

Highlights from the update:
I’ve been in the hospital for the last 10 days in a pretty serious condition.

My last Hickman Port (also called a Central Line - like an IV in my shoulder that can last for years) got infected with a bacteria called Staphylococcus Aureus that causes blood clots, which formed and then spread to the right atrium of my heart!! And then they spread to my lungs from there as well.
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One pleasant surprise has been how attentive and open the Stanford Hospital has beeen to ME/CFS. The doctors here have talked to my ME/CFS doctor multiple times and actually taken his advice. For example, they listened to him about getting a specific steroid before a contrast CT Scan so the contrast didn’t make me worse as it often does to ME/CFS patients. They actually listened and gave me exactly what my ME/CFS doctor recommended in the exact way he recommended it.
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And they just renovated a whole floor of rooms and I was blown away to find how ME/CFS friendly they are! They even have huge windows with 2 levels of light blocking blinds operable by remote and mind blowing views of the sky that have been breathtaking for me after the same view in my room for 15 years. There are only a few small tweaks needed for these rooms to be 100% Severe ME/CFS friendly. Which makes me think "If they can do this by accident, why can’t the rest of the country make ME/CFS friendly hospital rooms and housing and emergency care wards, etc like we all so desperately need - on purpose? If it can be done by accident here, it can be done with intent worldwide even better."
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PART 2: At Home

I’m back home from the hospital and want to add one more update to this video mostly so you know that I’m not at the hospital right now. I’ve been home for about 5 weeks, but really not doing well after an abusive discharge that was really a plot twist after the great care I received the whole rest of the time. I’ll be making another update about what happened because it’s a bit shocking. Plot twist! So stay tuned.
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I’m soldiering on and hoping for better days ahead, just like all of you. There are so mamy dreams to work for and fulfill.
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New update that does a great job (at least from my perspective) at describing not only how profoundly disabling "brain fog" can be, but also how it can utterly destroy one's "self" - not the sense of self, but the actual self. Deeply moving and deeply familiar.

At the same time, amidst all the sorrow and gloom, it is worth remembering that it wasn't that long ago that Whitney was unable to speak!

Audio linked below in the transcript. There is a video as well, posted on FB, but not yet up on his blog (I assume it's coming).

[edited to clarify emphasis]

Severe Brain Fog
[words taken from video transcript and re-worked into (better) writing by myself]
I want to talk about severe brain fog, which is something I’ve been dealing with a lot lately. Not to complain, but just to try to document what it’s like while I’m in it, which is hard because you have to think to communicate well, and severe brain fog takes that away. So I’m not at the most severe place right now.
♿️
: :
https://www.whitneydafoe.com/.../26-05-23-severe-brain...
Something I think is unique about ME/CFS is that, unlike almost every other illness, it just keeps taking from you. There’s no limit, and whatever severity level you’re at, you always think there’s some limit where part of you, part of your life - it’s not going to touch.
But those of you who’ve had ME/CFS for some time know that there isn’t. It’ll take everything. At first, it takes your ability to exercise, but you’re still out in the world. And then it restricts you to your house, and then it restricts you to a bed. And then you would think it would stop there, but it doesn’t. Then it stops you from moving very much in bed and being very active in bed, and then it invades your mind, and that’s where it becomes an absolute nightmare.
Two weeks ago, I was just feeling miserable because I could think about all the things I wanted to do; All my dreams and goals, all the things that I could work on in bed if I had just 1% more energy, and also just the things that I love, the things that bring meaning and joy to my life, and the things that I find beautiful.
And I was really miserable because I could think about those things, but I couldn’t act on any of it. I couldn’t work on any of it. And if I tried, I would lose the ability to even think about it. But lately, I’ve lost the ability to even feel or think anything. When I was at my most severe and I crashed, I used to go into extremely severe brain fog, and I used to call it a thoughtless, feelingless void.
And that’s really the best way I can describe it. It’s like there’s just nothing there in your mind. And I’m back really close to that.
I’ve just got barely enough in me to make a couple takes of this video and ramble a bit because I can’t organize my thoughts. But even when ME/CFS starts taking from your mind, you think there’s some limit - something that’s yours, that is sacred and defines you in some way, or is just you in some core way that nothing, including ME/CFS can touch. But there isn’t. ME/CFS keeps going and will keep taking, and when it’s at its most severe, there’s nothing left, and you’re just laying there unable to think or feel or process anything around you.
So the world is totally overwhelming, and that’s when stimulus and sound and noise and touch and light, etc start to become too much. And I’m not experiencing that right now, but the inability to feel the things that my whole life I’ve loved so much, and that bring me so much joy even to think about is devastating.
I’m lucky enough to be able to listen to music and watch movies right now ever since Abilify. But listening to music right now just sounds like noise because my brain can’t process it. And I know a lot of you can’t listen to music, and I’m lucky to be able to do both of those things.
But when my brain can’t turn the sound into beautiful music, it’s not worth anything.
And watching movies, I feel like I’m just watching these moving images on a screen, but my mind doesn’t put them into something that means something to me. In cinema, they call it "the suspension of disbelief", where the movie sort of tricks you into not disbelieving that it’s just a film, and you fall into it sort of as real life.
So the filmmaker in me is thinking of that. The suspension of disbelief isn’t happening. (I couldn’t help but geek out for a second.)
I think I had 20 good minutes today where I could write something a little bit and then the rest of the day it’s just been this nothingness. And if you haven’t experienced the nothingness, the thoughtless, feelingless void, you have to experience it to know how little you can feel and think while still being alive.
At every level of ME/CFS you suffer. When you’re housebound, it feels like that’s the most horrible thing in the world, and then you become bedridden, and it’s like this whole new level of torture, and you just wish you could go back to when you were at that time when you were housebound - still complaining and really suffering. You wish you could go back to when you were housebound and really miserable, but that sounds wonderful now.
There’s always the possibility ME/CFS can get worse. So I have to try to remember that it can get worse right now and find gratitude and peace in what I have.
But trying to remember that it can always get worse is really hard. I have come to think that it is human nature to take what we have for granted, at least at such basic levels of existence. Like thought and movement.
Sometimes you just have to keep going and hope that it will all come back, because it always does with enough time. But for right now, I just feel like a big blob.
I really just feel like a big sack of flesh and bones.
Sending love,
Whitney
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PS. Just a reminder that this was recoreded and then the transcript edited later during glimpses of more clarity and less fog. Recording a video like this or writing something like this would be impossible in the midst of severe brain fog. Which is important to mention because the world only sees us at our best when we can express ourselves. When I’m at my worst I cannot think well enough to put words to how I feel and may often only manage to scream "freeeeeeeedom!" (and for many ME/CFS patients who cannot speak, scream silently)
❤️

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Useful Links:
❓
What is ME/CFS?
https://www.whitneydafoe.com/mecfs/whatismecfs
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My Story:
https://www.whitneydafoe.com/mecfs/mystory
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ME/CFS Resources:
https://www.whitneydafoe.com/mecfs/resources/
✏️
My ME/CFS Blog:
https://www.whitneydafoe.com/mecfs
✉️
Subscribe to my Blog:
https://www.whitneydafoe.com/subscribe
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Donate to ME/CFS Research:
https://www.whitneydafoe.com/donate
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My Photography Print Store:
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ScoutB said:
Yes it’s unlike anything I’d experienced before getting sick. Felt like my brain got scooped out except for a few bits around the periphery.
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Indeed. Whitney's words about processing music, even when the brain is at least somewhat functional (e.g. enough to record a few observations), and the fact that it just becomes noise, that it is simply processed as disjointed, overlapping sound really resonated with my own experience, and gets at something that I often work at expressing. I now assume the experience is something like how other animals, e.g. my cats, perceive music, though perhaps that is selling them short/

Similarly, but on a more profound level, I remember Physics Girl talking about her experience looking out the window and, even when her sensitivity to light allowed her to do so without pain, finding that the images she could see simply didn't make sense. Prior to developing ME/CFS, I didn't know that it was possible to be so cognitively disabled, so absent, outside of extreme and permanent brain injury (even in the very last days, those that I have known with dementia could still process music as music, for instance). Yet, here we are.
 
I really appreciate Whitney's descriptions of the experience of ME/CFS, but this does not sit well with me:
Something I think is unique about ME/CFS is that, unlike almost every other illness, it just keeps taking from you.
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ME/CFS is not unique or unusual in that regard. Many illnesses take the same and more, including the ability to ever communicate what you're experiencing.

Without that sentence, it's a really valuable account of the most severe experience of ME/CFS.
 
Evergreen said:
I really appreciate Whitney's descriptions of the experience of ME/CFS, but this does not sit well with me:

ME/CFS is not unique or unusual in that regard. Many illnesses take the same and more, including the ability to ever communicate what you're experiencing.

Without that sentence, it's a really valuable account of the most severe experience of ME/CFS.
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I agree. Try telling that to people that are dying of progressive diseases or anyone with a chronic illness that experiences yet another limitation from it.
 
Evergreen said:
I really appreciate Whitney's descriptions of the experience of ME/CFS, but this does not sit well with me:

ME/CFS is not unique or unusual in that regard. Many illnesses take the same and more, including the ability to ever communicate what you're experiencing.

Without that sentence, it's a really valuable account of the most severe experience of ME/CFS.
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Agreed many many people, like me, have lost family members to dementia for example in which there is nothing but loss over years until the person’s personality and ability to function has eroded away.
 
Yep, people with early onset dementia have 'good days' and 'bad days', and if don't live with them or see them every day, you can easily miss it altogether, until one day you realize they are no longer the same person you once knew.
 
Am I correct to say that Whitney tried a lot of meds, but the ones that did "something" at the time were Lorazepam, then Abilify and lately the BornFree protocol (which he himself said he wasn't sure about and has received criticism)

We're thinking if our daughter should try Lorazepam instead of Oxazepam, the latter doesn't cut it for her and I'm reading some anecdotal "evidence" that this could work better for her

But looking at the the difference of the 2 it looks the same, only Lorazepam is stronger?
Is there a reason Lorazepam would help better than Oxazepam?
 
Sizzle said:
But looking at the the difference of the 2 it looks the same, only Lorazepam is stronger?
Is there a reason Lorazepam would help better than Oxazepam?
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There are probably differences in how quickly they work and how long they last but otherwise not much as far as I know.

It is not clear what benefit is hoped for? Sleeping better ? Less anxiety?
 
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