Dark Night
Hi. My name is Hal Walker. I’m a 60 year old musician from Kent, Ohio and a close friend of Emma Kitchen. I’m sorry to report that Emma is going through a very difficult time right now. She’s too ill to send this update, so I have her blessing to do it on her behalf.
I’ve been living with ME/CFS since 1991. About four years ago, when my symptoms became more severe, I started documenting my experience in a Substack called “Living in a Body.” In the Fall of 2024, when Emma commented on a piece I wrote called “Monk,” we exchanged direct messages on this platform. Since then, we’ve continued our communications on WhatsApp pretty much every day. Because of this illness, we’ve not yet gotten to meet in person, but we both very much hope that that will happen someday.
It’s been almost a month now that Emma has become completely intolerant to light. For weeks, she’s been living behind blacked out curtains with an eye mask on. Even sitting with her eyes open in a dark room has proven to be too much light and has caused her symptoms to flair.
On top of that, She’s become hyper- sensitive to sound. Emma has been living in silence and darkness in a room not much bigger than the size of her double bed. She’s unable to open the window cause the sound of the air is making her crash. I’m grateful that she’s been able to reach out to me once a day for either a voice memo or a phone call but apart from that, she’s living in isolation. This is the reality of ME/CFS.
I have received heart wrenching voice memos from Emma that I feel are worthy of being shared publicly. Emma has given me her blessing to share these messages with the Lanterns in the Dark community. Today, on International ME/CFS Awareness Day, I share these very personal recordings of Emma speaking with you in honor of all those living with this illness that are unable to speak.
Please know that although Emma is not currently able to look at any screens, I will convey any messages you leave here in the comments. Thank you so much. Now, I will hand it over to Emma Kitchen sharing her true story of living with ME/CFS.
Dark Night
Hi Hal, I’m so scared today. Last night, just loads of fear and stuff came up. Because I just feel like it’s getting worse. My mum having to come to the door, she must have heard me sniffling or something, crying quietly, and she just came in and sat with me. She wants to get the doctor out to come and see me for a home visit to see if we can get diazapam out of them… just to, I suppose, help on the days where I’m panic, you know, some days I’m calm. But there are days when it’s just panic.
I’m thinking about surrender. It sounds so nice — surrender, but I forget how terrifying surrender actually can be. What it’s actually asking for, because it’s asking to say “yes” to the things you’re most scared of. And I actually haven’t particularly been overly scared of M.E. flaring up and taking me back to that wholly bed ridden place, because I could look out the windows and I know that I can find peace and expansiveness in the sky, and I know that I’ve had deep moments of spiritual revelation in that space, and I know that I could do it. But having sight and sound taken as well — just existing in this void. I am afraid of that. I’m afraid, and it’s almost like this vulnerability of being a baby, just being wholly dependent on those around you.
Okay, I surrender. That’s what surrender is, is it?. Saying, “I’m terrified of this happening. Okay? Do it, then. Do it if you must.” But I am not surrendered to that void. And I don’t like visiting.
I feel so afraid, I just want to vomit. I don’t think I’ve been more afraid my entire life than what I am at the moment. Anyway, Love. I hope you are having a slightly easier time of it... or a much easier time of it.
My mom says she’s keen to get me over into the bungalow. I’m not sure if that’s gonna make me more scared or less. Right now, I just feel like too scared to move a muscle. It’s that willingness to flow with the river. I know that my suffering is coming because I’m afraid and I don’t want this.
FUCK, Hal. I am fucking scared. I am really fucking scared.
And I said that to my mum yesterday, and I completely like just cried in front of my mom. She said that she loved me and she was sorry that she’s not always loving towards me, that sometimes it’s shoddy, but she still loves me. That was... I’ve never heard that from her before.
She said, I’m not alone, and she’ll do whatever she can, and she’s with me in this. She was like, “Oh, I think it’s time that we called for some help from Jesus.” I was like, “What the fuck is Jesus gonna do? What’s anybody gonna do?” That’s the whole fucking point. There is nobody is there coming to rescue me? All that’s gonna happen is that this is just about me and acceptance, me and the void. There is no man on a cloud that’s gonna wave a magic wand. There is no amount of begging a God to save me. Anyway - I’ll try to speak to you later. I’m premenstrual. It’s a bad fucking combination.
The Next Day
Morning, Hal, I’ve got the bad fear again. Last night when I got off the phone from you, not long after, I took diazapam. I felt really disorientated, and I could hear, kept hearing sounds like the central heatings buzzing, or the water filters buzzing and these things weren’t on, but I could hear them like they were on. And in the darkness, when I take my eye mask off, the room starts being illuminated in weird ways because of the sensory deprivation I expect. And I just grabbed herbs and put them in a cup and drank them. And I think it must have been a bit of a wild brew, but I really felt like I was about to go mad and I really freaked out. So I took diazapam. I’ve only got a couple left.
I can sit with terror to a point then I think terror really asks for somebody else’s hand to hold yours. And at four o’clock in the morning, there’s no hand to hold and I feel like - you know the terror of being too sick to be able to speak and say, “Can you hold my hand?” Too afraid of the noise that person will make coming into your room, and if that’s gonna make a crash happen. And I feel like, like there’s this sense of failure for taking diazapam… like I should be sitting with my fear and Holding my fear. And you know this is a spiritual practice, and I do it. I sit with fear all the time. I watch it come. I stay with it. But last night was just really terrifying, and I woke up this morning. It’s like, Diazepam helped me just go to sleep. But I woke up with the terror still in my heart this morning. It’s what I’m sitting with now.
My mom came in to bring me some breakfast and I had to tell her that the ordinary signs she was making in the kitchen yesterday were making me crash. She’s really scared. She’s eager for a doctor to come and see me. She’s gonna try to make that happen Monday, but I don’t know what she thinks they’re gonna do. Anyway - I think I’m just saying yes for her relief actually.
You know, Hal, this morning, it’s like, I know the practice, I feel like I am on a razor’s edge, and it’s just this moment, just this moment, just this moment. And fear comes. And these fear narratives come about what the future is going to hold, and what about this, and what if that, and what if the other, and how will you go with this? And and I know that… I know that it’s just a state of now that surrender is only ever asking for now, this moment, this sensation that I can hold it, that I’m equal to it. What I’m not equal to is the storylines this fear is telling me. So I just keep trying to come back to the raw feeling of fear in my body. Where do I feel it? How does it feel? How is it moving? Where is the sickness? What’s its movement in my body? Where? Where can I sense it? Can I accept it in this moment? Yes, I can.
The Course in Miracles has got one of its lessons saying, you know, I place future in the hands of God. So every time I’m getting a fear thought, I’m just saying that. I just find my way back to the spaciousness. And that’s the tricky thing, when you’ve got fear so fierce, spaciousness is obscured, and all that’s left is to just be very present with fear. And as soon as I feel this need to get away from the fear, it increases fear. It increases the body’s response to fear. More adrenaline gets pumped out. So I have to get closer to fear. I love you, Hal.
I am sending so much love to Emma, and am so sorry to hear that she's back in such a place. I am glad that she has you to speak her truth out loud to - I know it can feel terrifying to not have that truth heard, especially when it feels so heavy and razor-sharp. I was really struck by this "I’m thinking about surrender. It sounds so nice — surrender, but I forget how terrifying surrender actually can be. What it’s actually asking for, because it’s asking to say “yes” to the things you’re most scared of. " - I feel that deep within my bones. Surrender sounds so easy, so gentle, and yet it takes great courage and intention, and often a great force to override the logic of holding tightly. I know there isn't really anything that can be said to make this reality feel 'better', but I am here, thinking of Emma.
Holding Emma in velvety dark silent love and wishing for relief.