On Oct 20, I recorded this in one take into the microphone with no edits. I hope you’ll take some time to slow down and listen. (28 minutes). Thank you. ❤️ Hal
Keep it Light
Hello, friends. Hello, loves. Hi beauty. Hi, mom, dad, brothers and sisters. Hi, Hallie. Hi, everybody. Hi nieces and nephews, all my cousins, aunts and uncles and grandparents, all the ancestors. Hello, Goddess Lover, Earth Mother, Father Sky.
Hello, all the small critters and all the flying, soaring birds, and even the groundhogs. Hello! It’s me, Hal. Welcome. It's episode 94 and it's called “Keep it Light.” Stay in the moment.
I've had anything but a light last couple weeks, but I'm keeping it light. This could be a difficult Substack for some of you to hear, but I want to encourage you just to keep it light. Keep smiling, keep sipping on that tea. Keep aligning yourself with this moment, which is exactly the way it's supposed to be. I really believe that.
It’s been my most helpful tool lately, to keep it light. I smile and say, Oh, yay. I get to have this moment.Yay, I get to have this moment.
I have this desire to start using more affectionate names for the people in my life. I met this woman, Emma, who lives with severe ME/CFS in England. From the moment I met her, I wanted to call her Queen Goddess, Earth Mother. I'm realizing I don't have the time for not noticing the divine in everyone. I'm done seeing people through the chaotic lens of my critical brain, of my critical, judgmental brain. When you walk into my room, you are a divine light. When you listen to my Substack, you are a holy brother, a holy sister. Holy they/them/theirs. I have no more time to take it for granted. I'm so tired of my old way of thinking of it's not enough, you're not enough. I'm not enough. I'm done with it.
So anyway, after meeting this woman Emma a couple weeks ago, who has really been through it—years and years of just barely hanging on with ME/CFS—and basically talking about not doing, and the magic of not doing. And the spiritual gift of not doing. That’s been one of my big regrets with ME/CFS is that I didn't stop doing much sooner, like episode five or something is called “No More Striving.” Then I went on and strived for 90 episodes, trying to be amazing. Trying to get my story across, and here I am at the end of my rope, just trying to get one more out.
But anyway, a couple weeks ago, I told Emma, I said, Emma, I'm done all I'm done with all doing. I'm done with doing. And I sat on my recliner and I felt peace. I don't have to do anymore. I don't have to create. I don't have to do amazing things. All I have to do is be. And I told Emma, and she sent me this beautiful one minute and a half recording that I've been listening to several times to inspire me. Here's what she says.
Hi Hal, just a little cheeky message. I was really happy to hear that you were stopping doing, stopping all doing. It's not forever, you know.
But I was pleased, because being, you know, like being in being for a consistent time, that's where the magic happens. And that's so exciting. So while you think you're having the worst time of your life, you're actually at the doorway of the best thing that could ever happen to anybody in their life, finding their true true self, their true being, the God that lives within, God that is what you connect with in that space. I mean that's like being on the precipice of the highest human experience possible. So you know, it's quite a privilege to have met you at this time, I think. Anyway…
So I was sitting on my recliner, glowing, in my newfound determination to do nothing, thinking that I had finally beat ME/CFS. My attitude was finally ready, and by doing nothing, I would have no more crashes. And then I started getting ready for bed. And my daughter and her mom and I have started this book club where we're reading. What is it called? It's a great book. I'm halfway done with it. Where the Crawdads Sing. That's it. I was really enjoying that book, reading it out of my Kobo device, and I read about two pages of a kind of sexy scene. I didn't know they had R-rated scenes in Where the Crawdads Sing. I had no idea, but there it was, and a crash came on, and I gotta say, I was devastated. Minutes after I had had this realization that I had beaten it. I basically learned that reading is not an option, and that began a series of my 10 days of crashing constantly. Like I would say, probably within a week, 10 crashes.
If you don't know what my crashes are, read a previous episode they’re…It’s almost like a seizure. My brain does something weird, my heart speeds up, my stomach gets sick. It lasts for about 30 seconds, and then it's over. But I've had dozens and dozens of these in 2024 and each one has had devastating consequences. I don't know why they happen until it's too late, over and over again, I give it a cause, but never really understand, they come out of the blue. The only time I'm safe from crashes is when I'm on Ativan. I'll tell you more about that in a minute.
I had a crash one day, I was lifting a fork to eat, and I crashed from the weight of the fork. One day I was…normally after I crash, I get sort of a boost of adrenaline, and I'm free from crashing for about an hour, a couple hours. This time, I decided to use that freedom to go watch a little YouTube. This was insane. This was one I really beat myself up about. I had just had a crash. I was feeling crash proof because of the adrenaline, and I opened up YouTube, and guess what? Had a crash really hard where I really beat myself up for that one, like, You stupid, you motherfucker. That was not a light attitude, just so you know.
I basically haven't gone a day without a crash. One day I woke up, I was so weak I was scared to reach for the water, and there was loud leaf rustling outside my window. And then an airplane came by, and I feel like it was the sound of the airplane and the leaves that caused a crash. So I'm wearing noise canceling headphones now.
The most devastating one came just a couple days ago, and I was determined to go four days without a crash by doing nothing, having people feed me my food, just total light attitude like, Yay, I get to spend the day not moving my arms. By the way, I've lost most function in my arms unless I'm on Ativan. I can't write, I can't move water. I can’t. So anyway, a friend of mine was feeding me oat bran, and I said, Give me just a little bit bigger bite. And he gave me a bigger bite, and it was a hot bite. And as it went down my throat, I crashed. I took a light approach to that. I said, Okay, Hal, there's the crash. Keep it light. Just keep smiling. A few minutes later, I was voice memoing My sponsor to let him know what had just happened, using a very quiet voice, saying about two sentences and I crashed. A little while later, I attempted to eat a small piece of salmon, and even just putting in my mouth felt weird, but I put the salmon in my mouth and it made it down to my stomach, and then I crashed. That was three crashes in one morning. Never experienced anything like that. My light attitude turned into reaching for Ativan. I've been very resistant to using Ativan too much. I know it's addictive. I know it loses potency the more you use it. So I'm just trying to do it very conservatively.
But ever since this, these crashes happened around eating, I'm realizing some action needs to be taken. I probably need, or I'm certain I need, medical help, medical intervention, probably one of these nasal tubes, nasal feeding tubes. I've got a team of people trying to figure that out. Unfortunately, they're mostly clueless.
There are few if any doctors in northeastern Ohio that even know the word ME/CFS, you go into a doctor's office and start telling them about crashes, and they don't know what you're talking about. I went to a well-respected guy who sort of knows about ME/CFS this year, and he became basically said Here, let's give you a bunch of blood tests to find out if you have anything else besides ME/CFS, because if it's ME, I just can't treat it, I don't know how to treat it. So that's the kind of illness we're living with, millions of us, the millions missing. The doctors are clueless.
We have to take it into our own hands. You know, I call my ME/CFS friends to find out what they would do. And couple of them said, Hal, use the Ativan. You feel free to use the Ativan so that you can eat while, while you're figuring out what to do next, use the Ativan freely. So that's what I'm in now. I'm in this process of daily use of Ativan, trying to find just the right dosage that's not too much, but keeps me from crashing. Ativan has been a miracle drug, if it if it weren't addictive, and it's been amazing. I mean, I'm able to function, I'm able to eat, talk quietly. I'm able to be in a room with lights on. I'm able to do this podcast right now.
I'm able to go to the bathroom without assistance. So for now, it's a Saturday, and this is going to be a week of finding medical help. And believe me, I don't know how that's going to happen. Probably go to my primary first, see where she leads me. But the point is, I'm trying to keep a light attitude. Just keep it light. Keep smiling now.
You know, in the end, we're all just part of nature. We're all part of this amazing thing called nature, and we get sick and we die. New generations grow up, the old generations die. My grandfather, you know, that's one thing we don’t…we don’t call the ancestors into it enough. Calling Harold, my granddad and AlviDa, Lilian and Earl. They had this moment in their lives when they thought they were the kings of this world, kings of their families, kings of their household. And it lasted a split second. And now I was the king of the household for a little while. I was the king of this dysfunctional household here on 131 South Chestnut. We did alright, though. Now Hallie and Andy, they're the kings, kings and queens.
The one regret I have is that I don't get to grow up to see Hallie as an old woman. I really am dying to see Hallie as an old woman. Oh, my God, how fun that would be, but we don't get to do it. So we die. We die, and it's not that big a deal. You know, we feel the feelings. Up until the moment I die, I want to be keeping a light attitude, smiling, maybe some crying, a lot of hugging, lot of loving, lot of calling each other affectionate names, none of this bullshit, holding back, I’m sick of it.
Oh, and by the way, I know what kind of funeral I want, and I'm gonna close with this. In case you don't know, I've become a Quaker. I found my home in the Quaker church. I found the Quakers first back in 1989 and I loved it. And then I got pulled into the Unitarian Universalist for about 25 years. And it was a job, a perfect fit as a job, it was the most beautiful community I could have ever hoped to work for, to be a part of. Some of my happiest moments in my life were in that church and at SI, but it never really felt like my spiritual home, to be honest. This year, I found the Quaker Friends meetings to be my spiritual home. I love it so much. There's a daily meeting out of Pendle Hill, which is a Quaker center near Philadelphia. I enjoy the central Philadelphia Quaker meeting on Sunday morning. I go out to Portland, Oregon, Sunday afternoon, sometimes San Francisco. And there's a Quaker sharing group that happens on Wednesday, that I've become close with, and I just find so much depth there. Quaker meetings are based in silence. Sometimes the whole meeting could be in silence, but it's called Waiting Worship. Waiting Worship, where we're waiting for the Divine to speak, waiting for the still, small voice to move. And these are a lot of these people have been sitting for many, many years, and when they speak, you listen, sometimes people will sing out of the silence. Sometimes people will sing an old hymn out of the silence. There's no orchestra, no band, no choir. It's just depth and silence, which is what I've been longing for my whole life. I wish so bad I could go to these places. I mean, I'm doing it from my bed on Zoom, and they make it a good Zoom experience. But I just want to sit in that Quaker meeting hall in Philadelphia or in Pendle Hill and soak up all those old smells, feel all the spirit in the walls.
Anyway, I want my funeral to be a Quaker meeting, a meeting for worship in the style of the Quakers, based in silence, concentric circles in Hobbs Hall. Annette will welcome and explain what a Quaker Meeting is, and then we sit in silence. And then you discern, is this message that I'm hearing, is it meant to be shared, or is it meant to be held to myself? And if you're moved to share, then you stand and someone will bring you a microphone, because I'm imagining it will be Zoomed. I'm hoping it will be Zoomed so everyone on Zoom can hear the message. And then you speak. You give your ministry, whether it be a story or a prayer or a song, however the spirit moves you. And I don't know how long this goes on, but it goes on till Annette shakes the person's hand next to her. That's what I love about what they're doing. There are no clocks. When Annette shakes the hand of the person next to her, then everyone shakes hands, and then they go drink water. Drinking water, that's what I want. Everyone drink water, and we'll have a meal of abstinent food. No, just kidding, you can eat whatever you want. Have a big party. I really wish I could be there.
I was actually thinking about doing this for my 60th birthday, but you never know. You never know if I'll be around when I'm 60, the way it's been going. But maybe Ativan will keep me going for a couple more years, or maybe once I get a feeding tube in, my body will get to rest the way it needs to rest, and I can improve.
All right, keep it light, everyone. I know this was kind of a…I threw a lot at you. I bet you hadn't expected to hear about my funeral today. But I love you.
Also, I recognize that keeping it light is a heck of a lot easier when you're when you've got a significant amount of Lorazepam running through your blood. Believe me, there have been some very, very uncomfortable times of great distress and suffering in many of my worst moments. But even then, keep it light. Keep smiling. I love you. I love you, brothers and sisters and lovers, friends, cousins, all the critters, angels, lights, the light. You are the light. You are the light, and I appreciate you sharing the light with me. Yeah, there's a lot of beauty, a lot of living I still want to do. There's so many stories I have to tell. I want them highly edited. I want them highly edited, not these off the cuff ones, but I guess off the cuff’s okay, too. For now. I love you. Stay in touch. Don't give up. Keep it light. Bye, bye.
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