Two times a month, I attend an ME/CFS support call on Zoom sponsored by the Bateman-Horne Center. There are regularly almost 200 people on that call. The call is so well facilitated and has been a wonderful resource to me and many others. It’s given me a very positive impression of this not-for-profit organization. If you have a few dollars to donate in recognition of ME/CFS Awareness Week, I recommend donating to the Bateman Horne Center. Find the link below.
Emma in the Dark
The Chionanthus Virginicus in my backyard is in full bloom this week. It’s called a fringe tree. I planted it a few years ago and it keeps blooming every year. I’m glad that I planted it when I did. It just keeps getting more beautiful. I’m glad I noticed it at the farmer’s market and paid for it, and lugged it home on my scooter, and dug a hole, and put it in the hole, and watered it, and fertilized it. Now it’s a real tree on its own, doing its thing — every year.
The tree is covered with these beautiful white fringe flowers. I rolled my wheelchair out there this afternoon just to get a smell. It was worth it. I love that smell. It’s real fruity and fresh and you can smell it from several feet away.
I wish I could send a picture of it to my girlfriend Emma. She loves trees and she loves flowers. She loves the fresh air and loves the outdoors. But she lives with severe ME/CFS and for the last month she’s experiencing complete intolerance of all light. She’s living in a blacked-out room with blackout curtains and an eye mask on. Even opening her eyes in a darkened room is too much light for her system. It’s a terrifying and very difficult situation — with no help from the medical professionals.
From afar, through voice memos and phone conversations, I’ve witnessed the terror of this particular rendition of this illness. It’s all part of ME/CFS, the mystery of this multi-system illness that devastates lives with no known cause and no known treatment.
But Emma is facing it heroically. She’s been through so much with this illness and I have a lot of respect for the way she faces it — with honesty, grace, and courage. But let me tell you, she’s going through the wringer right now. Please send your most loving and caring wishes and prayers to beautiful Emma. Let’s make sure she knows she’s not alone.
The full bloom of the fringe tree just happens to coincide with ME/CFS Awareness Week. May 9 through May 15 is the week that all the people with ME/CFS pull together whatever energy they’ve got and raise up their hands and say, “Look at us! We’re over here! We exist.” The millions missing call out from their darkened, silenced, hidden bedrooms, asking, pleading for help. “Who’s gonna do something about this? Please, somebody pay attention.” Somebody, take note. Take note of all the lack of care, all the lack of research, the lack of treatment, the lack of even diagnosis. All the people living in the dark. There are millions of people suffering without the care they need.
And here’s my little voice spreading the word “myalgic encephalo-fuckin’-myelitis,” also known as chronic-fuck you-fatigue syndrome. (Sorry about that, but it feels so good to say it out loud that way. It expresses my true feelings.) Myalgic encephalomyelitis, also known as chronic fatigue syndrome — poorly named, poorly understood, barely diagnosable, total mystery. Millions are missing. Including my dear friend Emma Kitchen.
Emma and I met here on Substack almost two years ago, and we’ve been in touch over WhatsApp almost every day since. We’ve hit it off real well, it’s been a real blessing to know her. We’ve never met in person, but we’ve been through a lot together in the last two years. And the story continues as she goes through this very frightening time, completely intolerant to light.
I’ve received a couple personal heartbreaking voice memos from Emma that I felt were worthy of being shared publicly. Emma agreed and I’m going to share them with you today in hopes of raising awareness to the reality and the difficulty of living with ME/CFS. Here she is, my dear friend, Emma Kitchen, going through a dark night, waiting for the soul to break through, waiting for the light on the other side, living through the terrifying reality of ME/CFS.
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 panicked, 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
