Wow I have never heard someone use my exact words and understand so much of what I am going through. My heart breaks for you because I understand how hard this is. I notice eating an apple or something I have to chew a lot uses too much energy. Yogurt is the easiest. When you said these words……I don't know what God's will is for me laying here in this bed, but it's quite a journey. I sure would prefer a different journey, God. I’d prefer a different adventure. This one's too hard…….. that made me teary eyed because I can so relate. Hal , let’s keep holding on the best we can because one day we will have new bodies forever and ever. We gotta keep remembering this is not our home . And thank God for that because it really sucks here. Your podcast is so inspiring and helping so many people that are lost and in deep depression. Thank you for giving me hope tonight and being a light in the darkness. Keep serving and shining that light on us. Thank you.
Oh Hal, my heart breaks for this community. I don’t have the right words or any advice, but I want you to know that I think of you often. I see my son reflected in your experiences with a medical system that simply doesn’t understand. If we could somehow fix this broken world, I’d hope for real, effective treatment to be within reach—soon. Until then, please rest and remember: you matter deeply to so many of us. Hold on. There’s light in those small spaces between each inhale and exhale.
I listen to almost zero podcasts - much rather read. But I find your voice extremely therapeutic, so am also following you stories via audio. Your voice reminds me of Tom Bodett, and I mean that as a compliment.
I use Otter.com to transcribe them.... then I get help for formatting. One interesting part of it is that Otter creates an AI generated summary of my podcast. It's remarkable what a good job it does summarizing in very human sounding terms. H
Thanks for including my video, Hal! I'm looking forward to seeing you later this week. MERC sounds like a great organization. I will tell people about it when I talk about you and the film. Often people ask what they can do to help and I think that's a great start. We've gotta do something!
All of us who have been left behind by medicine will feel your words deeply. I'm 3 years into choosing not to see specialist doctors and at times it has been terrifying. Sending you all my best wishes today.
Thank you Hal For another post that I resonate with! As you know I have spinal muscular atrophy and there has not been one single doctor in all of my 70 years who has helped me. They ask me questions, type in their computer, and then tell me to just keep doing what I'm doing! My holistic doctor was helpful because he at least emphasized nutrition and introduced me to meditation and massage and just guided me spiritually. So I hear you. It is sad and very frustrating. I continue to hold you in my prayers.
"I'm just feeling frustrated and scared and wanted to connect with you. I miss making these podcasts so much. I miss it when I'm not doing it, but I've been too sick. I don't know when the next one's gonna be, but I sure appreciate your support. I appreciate you listening."
You have so many gifts and I am just so encouraged that you still use what little precious energy you have to reach out through your writing and music to continue to inspire. I eagerly await the documentary. You have the ability to be so
honest about how dark this journey gets, while at the same time there is such joy and light in what you share. I pray this crash does not affect your base line. Thank you, thank you, thank you. Rest well renaissance man!
So many thoughts and directions from this post, I will be digesting it for a long time. But I found the documentary video clip especially moving. I'm an Ohio transplant but have been here for many years, and keep looking for ways to bloom where I am planted. I think the video of "Home In Ohio" is giving me a glimpse of how to do that. And I marvel at the kids' mass harmonica choir - it is probably the most profound example of communal music making I have ever experienced.
Jim's in the process of moving households, so is pretty busy until early May. I'm learning more about Substack behind the scenes and we will focus more on making something "consumable" in May.
Yesterday I gave a shoutout to your Youtube channel in a UU subreddit where someone was looking for streamable resources for a small UU group in East Texas(!). I've spent a bit of time on your channel over the past few days, and any attempt at putting words together to describe how amazing it is would fall far short. I know your energy and resources are limited, so not trying to flood you with questions. One hopefully simple one - I saw a few examples in the "This Moment..." videos where you were singing/playing mostly in sync with another musician. Did you use Skype/Zoom for the session, then pipe that into OBS or something similar? I've seen/participated in some attempts to do such a thing, but they've fallen flat. I'm trying to come up with good ways for streaming in the spirit of singalong sessions rather than performances.
I was once as severe as you with CFIDS/Fibro/ME: also have been to many clinics and seen many Specialist one of whom is Dr Nevile(near Philadelphia) who’s specializes in Adrenal Gland Insufficiency after also experiencing same syndrome for many years. He believes and his theory is that syndromes are because of Adrenal Gland Dysfunction due to “modern lifestyle” and/or inherited medical issues that “stress out” the adrenal gland which leads to systemic medical issues. He has his own protocol that’s really helpful though it does require many months to year to get significant recovery because of way the gland functions plus need for long time of rejuvenation. He dies Telehealth plus has large staff to assist him who often do personal coaching. It got me “out of a tail spin” fifteen years ago and still doing good though do have to be careful and precautions of not “stressing out” that’ll be rest of my life, much like a person who’s had severe illness for long time. Highly glad & grateful that I got connected to him!
Wow I have never heard someone use my exact words and understand so much of what I am going through. My heart breaks for you because I understand how hard this is. I notice eating an apple or something I have to chew a lot uses too much energy. Yogurt is the easiest. When you said these words……I don't know what God's will is for me laying here in this bed, but it's quite a journey. I sure would prefer a different journey, God. I’d prefer a different adventure. This one's too hard…….. that made me teary eyed because I can so relate. Hal , let’s keep holding on the best we can because one day we will have new bodies forever and ever. We gotta keep remembering this is not our home . And thank God for that because it really sucks here. Your podcast is so inspiring and helping so many people that are lost and in deep depression. Thank you for giving me hope tonight and being a light in the darkness. Keep serving and shining that light on us. Thank you.
Wow. Thank you so much for this comment, Beth. You've inspired me to keep doing what I can to help. All the best. Hal.
Oh Hal, my heart breaks for this community. I don’t have the right words or any advice, but I want you to know that I think of you often. I see my son reflected in your experiences with a medical system that simply doesn’t understand. If we could somehow fix this broken world, I’d hope for real, effective treatment to be within reach—soon. Until then, please rest and remember: you matter deeply to so many of us. Hold on. There’s light in those small spaces between each inhale and exhale.
Thank you, Diana. I like that. "There's light in those small spaces between each inhale and exhale." I'll use that. ❤️
I can’t recommend Four Peaks Healthcare enough. They offer telehealth from Arizona. Without them, I believe I would be much more severe right now.
Thank you! Yes. I should probably follow up with Harper Metz. I'm glad to hear you've found help.
Hal, maybe Dr. Katie Brown could help you. She specializes in ME/CFS: https://chronicfatiguedoctornearme.com/
Sending hugs and a bit of hope 🧡
Thank you, Amy. :)
Forgot to mention. I love that artwork.
Love you, Big Sister. H
I listen to almost zero podcasts - much rather read. But I find your voice extremely therapeutic, so am also following you stories via audio. Your voice reminds me of Tom Bodett, and I mean that as a compliment.
Thank you, Chuck. I appreciate you bring here and listening. I really enjoy making the audio. H
Do you transcribe them, or have someone that does that part?
I use Otter.com to transcribe them.... then I get help for formatting. One interesting part of it is that Otter creates an AI generated summary of my podcast. It's remarkable what a good job it does summarizing in very human sounding terms. H
Thanks for including my video, Hal! I'm looking forward to seeing you later this week. MERC sounds like a great organization. I will tell people about it when I talk about you and the film. Often people ask what they can do to help and I think that's a great start. We've gotta do something!
See you in a couple hours. Drive safely. H
All of us who have been left behind by medicine will feel your words deeply. I'm 3 years into choosing not to see specialist doctors and at times it has been terrifying. Sending you all my best wishes today.
Thank you Lorraine. I look forward to reading "It's the Hope." Thanks for being here. H
I'm so sorry you are suffering so much. X
Thank you, Karen. H
Thank you Hal For another post that I resonate with! As you know I have spinal muscular atrophy and there has not been one single doctor in all of my 70 years who has helped me. They ask me questions, type in their computer, and then tell me to just keep doing what I'm doing! My holistic doctor was helpful because he at least emphasized nutrition and introduced me to meditation and massage and just guided me spiritually. So I hear you. It is sad and very frustrating. I continue to hold you in my prayers.
Thank you Sue. I'm so glad I met you. I love seeing you on Sunday afternoons. H
Omigosh! Just watched the video! When those kids started playing their harmonicas I cried! And Hal, what a gorgeous voice... I’m gobsmacked! 🎶❤️
That was quite a moment. I remember the audience response the first time the harmonicas came out. It was wonderful. :)
I’ll bet!! 👍
"I'm just feeling frustrated and scared and wanted to connect with you. I miss making these podcasts so much. I miss it when I'm not doing it, but I've been too sick. I don't know when the next one's gonna be, but I sure appreciate your support. I appreciate you listening."
I am listening Hal. I am listening.
Thank you, Julie. I feel that. H
You have so many gifts and I am just so encouraged that you still use what little precious energy you have to reach out through your writing and music to continue to inspire. I eagerly await the documentary. You have the ability to be so
honest about how dark this journey gets, while at the same time there is such joy and light in what you share. I pray this crash does not affect your base line. Thank you, thank you, thank you. Rest well renaissance man!
Thank you Gwen... your comment made me smile and chuckle out loud. I appreciate your encouragement. H
So many thoughts and directions from this post, I will be digesting it for a long time. But I found the documentary video clip especially moving. I'm an Ohio transplant but have been here for many years, and keep looking for ways to bloom where I am planted. I think the video of "Home In Ohio" is giving me a glimpse of how to do that. And I marvel at the kids' mass harmonica choir - it is probably the most profound example of communal music making I have ever experienced.
Thank you Chuck. How's it going with getting Jim Scott going on Substack. I look forward to seeing how he uses it. All the best. H
Jim's in the process of moving households, so is pretty busy until early May. I'm learning more about Substack behind the scenes and we will focus more on making something "consumable" in May.
Yesterday I gave a shoutout to your Youtube channel in a UU subreddit where someone was looking for streamable resources for a small UU group in East Texas(!). I've spent a bit of time on your channel over the past few days, and any attempt at putting words together to describe how amazing it is would fall far short. I know your energy and resources are limited, so not trying to flood you with questions. One hopefully simple one - I saw a few examples in the "This Moment..." videos where you were singing/playing mostly in sync with another musician. Did you use Skype/Zoom for the session, then pipe that into OBS or something similar? I've seen/participated in some attempts to do such a thing, but they've fallen flat. I'm trying to come up with good ways for streaming in the spirit of singalong sessions rather than performances.
I was once as severe as you with CFIDS/Fibro/ME: also have been to many clinics and seen many Specialist one of whom is Dr Nevile(near Philadelphia) who’s specializes in Adrenal Gland Insufficiency after also experiencing same syndrome for many years. He believes and his theory is that syndromes are because of Adrenal Gland Dysfunction due to “modern lifestyle” and/or inherited medical issues that “stress out” the adrenal gland which leads to systemic medical issues. He has his own protocol that’s really helpful though it does require many months to year to get significant recovery because of way the gland functions plus need for long time of rejuvenation. He dies Telehealth plus has large staff to assist him who often do personal coaching. It got me “out of a tail spin” fifteen years ago and still doing good though do have to be careful and precautions of not “stressing out” that’ll be rest of my life, much like a person who’s had severe illness for long time. Highly glad & grateful that I got connected to him!
Wow. I'm so glad for you. I'll look him up. Thank you! H
Hey, Hal. All too true. As a side note, I now give my doctors (those who have sympathy but no knowledge of ME/CFS) the Mayo Clinic Proceedings CME course, to educate them. Some have really appreciated it. https://www.mayoclinicproceedings.org/article/s0025-6196(23)00402-0/fulltext
Hi Tami. That's such a great suggestion. It takes courage. I'll check it out. Thank you. Hal
It does indeed take courage.