Beautifully weaved together Hal ❤️. Tremendous subject handled with great awareness. You are an orator of truth. What more could God want, but for you to live and share the truth of this moment. Thank you for sharing my experience, it is a privilege to be heard by your community. Love to all ❤️
You two are such a dynamic duo! Your words ring so true. I wonder if we all would have discovered such deep (re)source and the necessity of connecting to source to feel the essence of life without experiencing ME. I don’t think I would have found this connection without this reality that I would have never chosen in a million lifetimes! Thank you for sharing your truths with us!❤️
I have no idea what I'd be doing right now if I didn't have this illness, but I have a feeling it would not include slowing down as much as this illness has forced me to do. Thank you for being here, Gwen. A dynamic duo!? I feel it. :) H
Hal, this episode is so beautiful. You and Emma have captured with words the essence of just being. Does that make sense? I know with my heart what I want to say. I am not sure I have words to convey it. Finding peace, joy, and love each day is living.
Thank you Annette. It was so good to sit in silence with you yesterday. It's 10:30 now and I imagine that you're sitting in Quaker worship. Sending love in this moment. Hal
This, Hal and Emma—is it. I can’t thank you enough for this beautiful post, which I will return to again and again. Emma, your voice, your wisdom, has much to offer those of us living with chronic illness, so I’m glad to see you joining in the conversation. Hal, your journey shared has been a blessing to so many, including me.
Like you both, I live with ME/CFS. I remember how horrified I was the first time I heard a doctor tell me there is no cure for this illness, and I should focus on “quality of life.” I left the medical center sobbing and walked into the wrong parking garage where I spent quite a while roaming around trying to find my car.
Ten years later, all I can say is that I have a good life. I’ve had to let go of a lot things I once loved, as we all do with this illness. But I did not have to let go of love, or God, or, thank goodness, my creativity, which ties me to the sacred, and to others.
What you’ve each said about being with the “what is,” not resisting it, but even, embracing it, is such a testament to the soul work you each have done.
So, cheers to that, and again, deep gratitude to each of you.
Thank you for this, Sara. You make me think, "What are the things which tie me to the sacred, and to others?" That's where I want to put my limited energy. I'm glad you're here. H.
Sara, thank you for your kind words and encouragement. Truly I feel blessed to receive them. It sounds like you have travelled long and deep. Sending love from my heart to yours.
I feel blessed to meet you, Emma. I also want to comment on your beautiful first post, but will get to that a bit later. Sending love back, from one traveler to another.
I always enjoy your posts, Hal, and it’s such a treat to have Emma share her experience with you. I’m learning that there are gifts even in the most difficult situations. On my end, as a mother, wife, and caregiver to both the men in my life (Austin and Michael), I’ve come to realize that quality of life is found in simply being present in the moment. It’s about enjoying the little things: eye contact, a silly situation that makes me laugh out loud, the way the sun warms my skin and just being with people I care about, who care about me, with no expectations. That’s where I find quality of life these days.
I am hopeful opportunities to expand the quality of life for all of those affected with ME/CFS.
For many years, I've heard that "it's the little things," but I was always more drawn to "the big things." I guess one of the gifts of this illness has been to slow me down enough to take notice of the little things. For the last couple days, it's been feeling the Spring breeze through my open window.
You seem like a strong and wonderful woman. Austin and Michael are so lucky to have you. Thank you for your support here. Your comment here touches me. Hal
“…this feeling of being complete and whole…and there’s no needing in it” Wow. This really spoke to me today. For the last 20 years I’ve been too busy/preoccupied with work, raising kids, being married, etc to think much about my inner life. Now, I’m faced with myself & lots of alone time. Finding peace with the what is” is indeed a practice.
This is such a beautifully raw and honest peice. Thank you for expounding on perspective and how life can be seen as a gift even in the hardest of circumstances.
You’re welcome Hal. I can’t say I completely understand what you’re going through but have been battling my own journey with ME/CFS for almost two years now. I regularly have to remind myself that life is still a gift, regardless of the pain, feelings of isolation and overall grief over how I thought things would turn out. You’re not alone. We’re all rooting for you.
Hal and Emma: Thank you for this episode containing so much truth. Connecting to the source is more precious than any of the striving and controlling I engaged in before ME. Well, truthfully, I still engaged in even with ME whenever I felt well enough. The severity of my ME has, so far, been intermittent. During a scary 6 months this past year, I thought I had well and truly F’ed myself with too much activity, but I have been given a reprieve for now and am taking it one step at a time, pacing, resting, praying, meditating, and (as Hal said) trying to extend love and kindness to whoever enters my circle.
I have been wrestling with fear about a permanent or long-term crash. You two have offered hope that the connection to source is not severed in that circumstance, but may even be deepened. I’m grateful for that hope.
Thanks, too, Hal, for your recognition of your relative privilege and how it gives you some space to explore these things and even to create this lovely podcast. Thanks for using it for good, truth, and beauty.
Thank you so much for your comment, Elizabeth. All that "striving and controlling I engaged in." (and still do) I'm finding letting go of the outside world so difficult right now. Your reminder of deepening my connection to source gives me hope. H
As I'm in the final stages of editing our film (and getting feedback from some people in my circle - my parents, my sound mixer, Daniel, and my boyfriend, Zach) I've been asking myself why is this film so relatable to all of us able-bodied people? And I think you've captured it well in this post. The general feeling of discontentment and the futile effort of searching for relief in the physical world is something that everyone experiences. I'm reminded of a scene in the film when you talk about your faith - you say something like "my faith is in the frisbee field." Meaning your faith was always in the physical world and in doing the things you love doing, and now you're finding faith in the spiritual realm. I see your immense progress in this post, from when we made the film a year and a half ago to now. Thanks for sharing, Hal and Emma.
Inspiration galore! This such a powerful post. I am glad you and Emma have such a wide audience to uplift! Thank you for sharing! Nice to meet you, Emma! ♥️♥️♥️
Thank you for reminding me that quality of life is a judgment, and we can surrender and be the witness instead of muddling through. These days I’m mostly well, but the fear lingers; it may not last. I like to think that if it doesn't, if my body fails, I’ll always be able to explore my inner world - a lot happens over there.
Beautifully weaved together Hal ❤️. Tremendous subject handled with great awareness. You are an orator of truth. What more could God want, but for you to live and share the truth of this moment. Thank you for sharing my experience, it is a privilege to be heard by your community. Love to all ❤️
Your comments are always so good, Emma. And now we've got full essays from you! You're a blessing in my life and in the world. ❤️ H
I look forward to meeting you, also. Thank you for the compliment
PS. I think my quality of life would be so much better if I had a very cool British accent!
I've been working on mine and I've literally watched my QoL improve.
It's not what it's cracked up to be!!!
You two are such a dynamic duo! Your words ring so true. I wonder if we all would have discovered such deep (re)source and the necessity of connecting to source to feel the essence of life without experiencing ME. I don’t think I would have found this connection without this reality that I would have never chosen in a million lifetimes! Thank you for sharing your truths with us!❤️
I have no idea what I'd be doing right now if I didn't have this illness, but I have a feeling it would not include slowing down as much as this illness has forced me to do. Thank you for being here, Gwen. A dynamic duo!? I feel it. :) H
Me neither, Gwen. ME has been a weird gift.
Hal, this episode is so beautiful. You and Emma have captured with words the essence of just being. Does that make sense? I know with my heart what I want to say. I am not sure I have words to convey it. Finding peace, joy, and love each day is living.
I always look forward to reading your comments Annette. I delight in your depth and vision. Can't wait to meet you in person one day ❤️.
Thank you Annette. It was so good to sit in silence with you yesterday. It's 10:30 now and I imagine that you're sitting in Quaker worship. Sending love in this moment. Hal
This, Hal and Emma—is it. I can’t thank you enough for this beautiful post, which I will return to again and again. Emma, your voice, your wisdom, has much to offer those of us living with chronic illness, so I’m glad to see you joining in the conversation. Hal, your journey shared has been a blessing to so many, including me.
Like you both, I live with ME/CFS. I remember how horrified I was the first time I heard a doctor tell me there is no cure for this illness, and I should focus on “quality of life.” I left the medical center sobbing and walked into the wrong parking garage where I spent quite a while roaming around trying to find my car.
Ten years later, all I can say is that I have a good life. I’ve had to let go of a lot things I once loved, as we all do with this illness. But I did not have to let go of love, or God, or, thank goodness, my creativity, which ties me to the sacred, and to others.
What you’ve each said about being with the “what is,” not resisting it, but even, embracing it, is such a testament to the soul work you each have done.
So, cheers to that, and again, deep gratitude to each of you.
Thank you for this, Sara. You make me think, "What are the things which tie me to the sacred, and to others?" That's where I want to put my limited energy. I'm glad you're here. H.
Thank you, Hal. And yes, here’s to putting our limited energy to good use.
Sara, thank you for your kind words and encouragement. Truly I feel blessed to receive them. It sounds like you have travelled long and deep. Sending love from my heart to yours.
I feel blessed to meet you, Emma. I also want to comment on your beautiful first post, but will get to that a bit later. Sending love back, from one traveler to another.
Oh Sara thank you much for reading my little offering. I'll look forward to reading your comment. I'm so pleased to meet you. ❤️
I always enjoy your posts, Hal, and it’s such a treat to have Emma share her experience with you. I’m learning that there are gifts even in the most difficult situations. On my end, as a mother, wife, and caregiver to both the men in my life (Austin and Michael), I’ve come to realize that quality of life is found in simply being present in the moment. It’s about enjoying the little things: eye contact, a silly situation that makes me laugh out loud, the way the sun warms my skin and just being with people I care about, who care about me, with no expectations. That’s where I find quality of life these days.
I am hopeful opportunities to expand the quality of life for all of those affected with ME/CFS.
For many years, I've heard that "it's the little things," but I was always more drawn to "the big things." I guess one of the gifts of this illness has been to slow me down enough to take notice of the little things. For the last couple days, it's been feeling the Spring breeze through my open window.
You seem like a strong and wonderful woman. Austin and Michael are so lucky to have you. Thank you for your support here. Your comment here touches me. Hal
“…this feeling of being complete and whole…and there’s no needing in it” Wow. This really spoke to me today. For the last 20 years I’ve been too busy/preoccupied with work, raising kids, being married, etc to think much about my inner life. Now, I’m faced with myself & lots of alone time. Finding peace with the what is” is indeed a practice.
The inner life of Caroline Walker... sounds like a fascinating place to explore. Sending love, beautiful sister. ❤️ H
This is such a beautifully raw and honest peice. Thank you for expounding on perspective and how life can be seen as a gift even in the hardest of circumstances.
Thank you for being here MJG. I could use a shift of perspective right now. Your comment helps. H
You’re welcome Hal. I can’t say I completely understand what you’re going through but have been battling my own journey with ME/CFS for almost two years now. I regularly have to remind myself that life is still a gift, regardless of the pain, feelings of isolation and overall grief over how I thought things would turn out. You’re not alone. We’re all rooting for you.
Thank you Hal & Emma for your wonderful words! Bless you both, I'm smiling at you!
Clarrisa I am smiling a big one back 🩷
Thank you Clarissa. I appreciate you sticking around here. :) H
I’m so pleased that you two found each other:)
It's great to have you here, Jess. Yes. I feel the same way. Emma is a true gem. ❤️ Hal
Jess 🩷 so bloody lovely to see you here! Welcome to Substack sweet friend 🩷.
Thank you for inviting me my fellow scooter friend 🥰 xx
Hal and Emma: Thank you for this episode containing so much truth. Connecting to the source is more precious than any of the striving and controlling I engaged in before ME. Well, truthfully, I still engaged in even with ME whenever I felt well enough. The severity of my ME has, so far, been intermittent. During a scary 6 months this past year, I thought I had well and truly F’ed myself with too much activity, but I have been given a reprieve for now and am taking it one step at a time, pacing, resting, praying, meditating, and (as Hal said) trying to extend love and kindness to whoever enters my circle.
I have been wrestling with fear about a permanent or long-term crash. You two have offered hope that the connection to source is not severed in that circumstance, but may even be deepened. I’m grateful for that hope.
Thanks, too, Hal, for your recognition of your relative privilege and how it gives you some space to explore these things and even to create this lovely podcast. Thanks for using it for good, truth, and beauty.
Peace to you both.
Thank you so much for your comment, Elizabeth. All that "striving and controlling I engaged in." (and still do) I'm finding letting go of the outside world so difficult right now. Your reminder of deepening my connection to source gives me hope. H
A hope exchange! How lovely!❤️
So sorry you are struggling with this beast of an illness and happy for all the love in your life that makes it full. Very inspirational.
As I'm in the final stages of editing our film (and getting feedback from some people in my circle - my parents, my sound mixer, Daniel, and my boyfriend, Zach) I've been asking myself why is this film so relatable to all of us able-bodied people? And I think you've captured it well in this post. The general feeling of discontentment and the futile effort of searching for relief in the physical world is something that everyone experiences. I'm reminded of a scene in the film when you talk about your faith - you say something like "my faith is in the frisbee field." Meaning your faith was always in the physical world and in doing the things you love doing, and now you're finding faith in the spiritual realm. I see your immense progress in this post, from when we made the film a year and a half ago to now. Thanks for sharing, Hal and Emma.
You're the best, Elanor. I can't wait to see your movie about me. :) Thanks so much for being you. ❤️
YES!
Inspiration galore! This such a powerful post. I am glad you and Emma have such a wide audience to uplift! Thank you for sharing! Nice to meet you, Emma! ♥️♥️♥️
Congratulations on starting your own Substack Carol. You're are a light in the world. ❤️ H
Hi Carol ❤️ delighted to meet you ❤️.
Thank you for reminding me that quality of life is a judgment, and we can surrender and be the witness instead of muddling through. These days I’m mostly well, but the fear lingers; it may not last. I like to think that if it doesn't, if my body fails, I’ll always be able to explore my inner world - a lot happens over there.