Hi. I’m Hal. Please press PLAY above to hear the intended podcast version of this episode. The full transcription is below. Consider becoming a paid subscriber to support my work. Enjoy. H
A Day in the Life
I haven't left the upstairs of my house in a while. It's been at least a week. Thank God I have a caregiver that brings my food up from downstairs.
I will report that my symptoms are as severe as ever, the most severe they've ever been. But my spirit is well. My emotional health is well. My mental health is well.
It's not easy, but I keep adjusting. I keep taking it as it comes and finding ways to get through a day. In this episode, I want to let you in a little bit about a day in the life, how I get through a day… just in case someone finds themself in this position and needs help figuring it out from someone who's been there. Believe me, I've been there.
This morning. I woke up at 4:30. I don't get out of the bed until 7, so it was a little disappointing knowing that I had about two and a half hours to kill. So I did some laying there, or would it be lying there, practicing calm, practicing smiling, practicing welcoming it all.
Actually, the first thing I do when I wake up is pray. I get on my knees there on the bed, and I mumble a few prayers. I say, “God, take away the fear. Take away the self pity. Thank you for this day.” You know the spiritual aspect of my life is really my only choice. Mostly, most of the worldly things have been taken away. So I'm focusing on the inner life, the inner life of the Spirit. So I pray and then I ride my wheelchair, my sweet Matrix wheelchair, over to my daytime bed. I am greatly privileged in the realm of resources for chronic illness — two sweet beds, a daytime bed and a nighttime bed.
And my caregiver has the bed made up real nice. So it's fresh. It's a freshly made bed. And I get into the fresh bed in the morning. It's cool and it's crisp and I climb in under the covers, I turn on the light, and I open up the 24 hours a day book. This is the spiritual guide for my 12 step program. It's a great book. I've really come to love it. Today was February 21st.
“I will be more afraid of spirit unrest, of soul disturbance, of any ruffling of the mind than of earthquake or fire.” This book takes this stuff seriously. It takes the inner life seriously, “when I feel the calm of My Spirit has been broken by emotional upset that I must steal the way alone with God.
I will try to keep calm no matter what turmoil surrounds me,” and I add what turmoil is within me in this body, “I pray that I may keep a calm spirit and a steady heart.”
You know, living with this ME/CFS ridden nervous system, maintaining calm is a full time job. That's what I spend most of my day doing. Essentially, to survive these very challenging circumstances, I have to attempt to maintain a calm spirit and a steady heart.
After I read the 24 hours a day book, I read the “Just for Today” card. It’s a card that people in my 12 step program read. It's nine “Just for Todays.” For instance, “Just for today, I will live through this day only and not tackle my whole life problem at once. I can do things for 12 hours that would appall me if I had to keep them up for a lifetime.”
That's a helpful one to read first thing in the morning, I regularly wake up with a kind of dread, like, “Oh god, oh my God. Not this again, not this life again.” And then I turn to that first one and I think, “oh, all I have to do is one day, just 12 hours.”
I like this next one. “Just for today, I will be agreeable. I'll look as well as I can dress becomingly, talk low, act courteously, be liberal with praise, criticize not one bit, nor find fault with anything and not try to improve or regulate anyone but myself.”
That is some good shit. That is some good shit, man,
“I will not try to improve or regulate anyone but myself.”
What a relief. What a relief that I'm not in charge. Everyone just gets to make their own crazy. They get to do their own crazy, or their own whatever they're doing.
You know, my daughter gets to be herself. My girlfriend gets to be herself. My mom gets to be herself. My sisters get to be themselves. Mango gets to be himself. I don't need to improve or regulate anyone but myself. What a relief.
This is a beautiful one. This is the last one I'll read just for today. “I will adjust myself to what is and not try to adjust everything to my own desires. I will take my luck as it comes and fit myself to it.” (lol) Nice. That one works so well for me. It's like I got some rough luck, but I'll take my luck as it comes and fit myself to it.
“One more. Just for today, I will be happy. Most people are as happy as they make up their minds to be. Happiness comes from within and is not a matter of externals.”
So just for today, I will be happy. Just for this moment, I will be happy. Create a little joy on the inside. I remember I used to give assemblies in elementary schools, and one of my favorite things to do was to challenge the students to create joy.
I challenge you now. Create some joy with me.
Breathe. Smile. Bring the joy up from the depths. Let the joy shine in your eyes. Fill up your whole head with joy. Put a little joy in your mouth. Make the inside of your mouth a smile and then do it all day long. That's what I do, except when I'm crying.
After I read those two pieces of literature, I have a half hour of quiet time. I put an eye mask on. I set my bed in the “zero gravity position” and I spend a half hour of time with the Source of all Being. Just quietly resting, quietly resting in the Presence of the Source of all Being.
Right after quiet time, the bell goes off, and Mango brings me my broth. I have eight ounces of chicken broth and it is so soothing. It's so soothing. It's so soothing on my racked nervous system, on my racked digestive system. It's so soothing. It feels so nourishing. It's nourishing and soothing and gentle and kind on my body. It's one of my favorite moments, sucking down that eight ounces of bone broth.
Little bit later, he brings me my 8 ounces of yogurt and a banana. That one tastes good. It's almost like starting the day off with dessert.
And then at eight o'clock I hop on to “Meditate Together” for a 20 minute meditation.
This is what I do all day long. Every hour on the hour, I'm meditating for 20 minutes. I think that's what's that's what's helping me survive — having a structure. I love having a structure. Even though I'm in bed all day, I barely leave the bed, I have a structure to my day. I recommend it.
For this first eight o'clock meditation. I do a Transcendental Meditation where I repeat a mantra in my brain.
And then at 8:22, the leader of the online meditation offers a prompt for discussion and we share honestly. They say, “We’re creating a safe space for listening and sharing, sharing honestly. And I don't remember what the prompt was this morning, but it might have been something like, “since it's Friday, what's something you'd like to celebrate from this week?” Or something like that. And I get to meet with this little community of people, meditators.
Then at 8:30 I hop right over to the Quaker Meeting for Worship. It's out of Pendle Hill in Pennsylvania. Seven days a week, from 8:30 till 9:10, we sit in silence, and when the spirit moves, people speak out of the silence or sing out of the silence. I often cry. I often weep from the beauty of the sharing. It's such a beautiful gathering of friends…of Quakers. And the things that come out of their mouths are just so led by the Spirit. Morning after morning, I'm reminded of what's important.
Sometimes I'm too sick to have the light on, but I love the gathering of friends. And every once in a while I speak. Every once in a while, my heart starts pumping a little bit, and the spirit moves and I share something.
I've never been there, but Pendle Hill is this gorgeous Quaker retreat center outside of Philadelphia. If I could live my life over again, I'm certain I would have done several residencies there and written the book there, made a CD there, written a whole bunch of songs there. I love retreat centers. I love retreat retreat places, and especially one that has Quaker Meeting for Worship every morning in the barn. Yeah, that's what I want.
Then at 9:15, I call my sponsor and I share all the things that I don't want to share. You know, I get honest. I talk about the deep inner workings of my brain and I ask for help. I ask for help on how to how to live my life on the spiritual path. I have a very wise, very kind, very gentle and loving sponsor and I feel very fortunate. I feel like I found a home with a sponsor. I could imagine him being my sponsor for the rest of my life. We talk seven days a week. I'm truly blessed.
Then at 9:30, it's breakfast time. After sometimes I'll make a call. I'll make a phone call to one of my fellows, but then before 10 o'clock, I've got to have breakfast. I've got my oat bran and my eggs and my butter, a tablespoon of butter in the one ounce of oat Bran and two eggs.
Then 10 o'clock rolls around. This morning, I did my second meditation at “Meditate Together.” Often, I'll have a 12 step meeting at 10 am or sometimes.
So that's my day. Every hour, on the hour, I'm meditating.
And this week, my long distance girlfriend
(who I met here on Substack) and I have found a wonderful rhythm. One thing about being in a long distance relationship is you got to find a rhythm. You gotta find a rhythm for contact. And Emma and I have found a really great rhythm that works.We'll always start the morning with a voice memo. Emma's in England, so she wakes up much earlier than I do. So the night before, I'll leave her a very loving voice memo on WhatsApp and then I wake up to a loving voice memo from her.
You know, I can't necessarily recommend long distance relationships, but we're really finding a nice way to do it. So here are the instructions. (lol) In case you're looking for some — a loving voice memo at night, a loving voicemail in the morning,
By the way, please don't forget that all morning, all day, I'm very ill, severe symptoms of ME/CFS. I mean, I haven't mentioned that yet, but very ill, very weak, deep weakness, deep illness.
But then at 11 o'clock, I take a quarter milligram of Ativan, a half pill. It masks the symptoms a little bit and then I get on “Meditate Together” for a 20 minute meditation, allowing that Ativan to sort of settle in. And it really helps. It eases up my symptoms a little bit. It masks the symptoms just a little — a quarter milligram,
And then with this great rhythm that Emma and I have found is at 11:30 we meet from 11:30 to noon, and we laugh and we talk and we say funny things. Sometimes we say sexy things. We smile. We say things like, “Oh, hey, beauty.” And she says, “Hello, handsome.” I'm not going to go into too much more detail, but it's just been a really great half hour.
And then at noon, I'm back onto the meditation for another 20 minute meditation. And probably for that one, I just rest in the mess. You know, I close my eyes and I rest in all of it. I rest in the thoughts. I rest in the sensations. I rest in the feelings. And then 20 minutes later, we've got another prompt to discuss among the Meditate Together community.
So I'm well supported in community. I mean, that's one thing. I have found resources that are getting me through this. I am not lonely. Even though this illness is a painfully isolating illness, I'm finding ways to not isolate. And I think it's saving my life.
Then at 12:30 Mango brings me my lunch. I've been eating brown rice, and today I had tofu and brussel sprouts. Really good salad. Mango makes a great salad with red cabbage and carrots and sauerkraut, avocado and cucumbers and tomatoes and greens, and then apple cider vinegar and oil. It's a really nice salad. I love it.
And then one o'clock comes, and guess what, it's time to meditate. (lol)
But on Wednesdays, I do a Quaker “worship sharing.” It’s a wonderful group out of California. Someone brings a quote, and then they come up with queries and we sit in silence. People speak out of the silence to share on the query. That's all I'm going to say about that. But just emphasizing that I have found community online and that's another example of it.
So continuing the wonderful rhythm that Emma and I had found is at two o'clock we share a daily meditation reading out of this book called The Journey of the Heart. And we'll read the day's meditation. Then we'll share about it. We'll share our thoughts. Today, It was all about love. Here, let me read a little bit of it.
“Let love be you can't control love. It's impossible. We've learned to let love be and be open to what that is in the new direction it may lead us. And love is a powerful, living force that permeates the universe and funnels through us. We don't lead it. It leads us and guides us.”
So we use this reading as a kind of jumping off place for a conversation. I practice being present and listening and sharing vulnerably with my friend. I've really been appreciating that. It's been such a joy to get to know Emma this way, even though we're separated by an ocean.
Well, this has taken too long, so I'm going to cut it short.
I take my second quarter milligram of Ativan at about four o'clock. I'm thinking that I'm gradually going to be titrating off of Ativan. So little by little, I'll take those half pills and make them smaller and smaller. I'm not looking forward to it. It's really quite scary. It's basically going to force me to face the reality and the depth of my illness and the reality of my limitations, which are very severe even with Ativan. But I'm not in any hurry. I'll let you know how it goes.
All right, we're gonna wrap this up and move along to five o'clock when I watch my show. I've been watching a show. It's called “Nobody Wants This.” And it's a fun show. It's a half hour show on Netflix, I watch a half hour a day. And it's about a rabbi and the non-Jewish woman having a love affair. And it's funny. It makes me laugh.
It's interesting. I have very little media in my life. I don't look at the news. I don't look at Tiktok and Instagram or Facebook. So this is my little indulgence into the world of Hollywood and beautiful people.
And then I have dinner,
And then I get to bed early. Around eight o'clock, I take my wheelchair over to the nighttime bed, brush my teeth, floss my teeth.
And I've been reading this wonderful trilogy by Fredrik Backman. The first one was called “Beartown.” The second was called “Us Against You.” And the one I'm on right now is “The Winners.” It's a great book. It's a great trilogy. Frederick Backman is a master of writing. You know, I've written a few good essays, but writing a novel, writing a trilogy like this, the way he weaves everything together. By the way, it's narrated by Marin Ireland. I'm listening to it on Audible. It's just such a great story. I'm really enjoying it.
One thing you'll notice I don't do very much of is writing or creating. In the half hours that I'm not meditating, I'm mostly just resting. I was inspired to break out some water colors today and try to make a card, but just the setup alone was more than I could handle, so it'll have to wait till another day.
All right, everyone, it's time for me to be done that went on a little too long. Thank you. Thank you for caring enough to listen. It's been a really rough path. It's been a rough road. But as I said, in my spirit as well. Emotionally, I'm well. I'm finding ways to get through.
I miss you. Miss seeing you. I miss being out in the world like crazy.
So take advantage of it for me. Hey, go skipping today! When's the last time you skipped? If you're able, please for me, go outside or in your hallway and do a few yards of skipping and smiling. And then report back in a comment. Let me know how it went. Everyone do a little bit of skipping today.
When's the last time you skipped? If you've got a body that can skip, you must go out and skip. Please! For me.
Thank you. Enjoy living in that body of yours. It's not going to be around forever.
I love you.
Bye, bye. H
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