Very interesting to hear about the experience. I can relate to your description of being "on" for camera or when talking to someone else. I hope there is a way to make the hidden reality visible.
In my experience when in those situations, the symptoms are only masked. I am distracted. But myalgic encephalomyelitis is a cruel companion. Ignore it at my own peril. It requires constant attention or gets very angry and makes me pay dearly.
These are some powerful and scary words, Colleen. I'm afraid that I have done too much ignoring it and I am paying dearly. The cruel companion is requiring this undisciplined guy to learn tremendous discipline.
The discipline required is something that is hard to explain.. and even harder to practice. I have tried to be accepting and compassionate with myself when the ideal of what my body requires clashes with enjoying life's moments outside routine. I do what I can when I can and try to be forgiving to myself when I choose to go outside my safe window.
Hopefully you regain baseline soon.
Finding tools to return to baseline helps offset some of my diverting from strict routine, but it has taken a long time to find those tools. Oral fluids, rest, protein, rest, iv fluids, rest, charcoal (carefully done away from meds), more rest. What used to take 4 to 6 days to recover is normally down to 2 or 3. Unless what I did exposed my immune system to viral/bacterial attack. Then it's at least 10 days...
Sorry about the long response.
Thanks for your efforts to be a window into this world.
H i Hal, really good episode. I can hardly wait for the film. I know it will be very good. Your illness has robbed a lot from you but it has also given you a lot. A new friend named Elenor for just one. Be ready to be swamped with attention when it is released. Save an autograph for me cause when you become more famous everyone will be wanting one. Thank you for your friendship. I love you.
This was one of my favorite episodes so far, Hal. What an extraordinary young woman Elanor is--poised, eloquent, sensitive, and wise beyond her years. The trust and admiration between you is palpable. I hope I have the opportunity to see the film!
This was incredibly powerful, Hal. I could relate to the artistic energy that’s activated in you through this exciting process with Elanor. Who, by the way, sounds super cool and I look forward to seeing her work.
My daughter Margaret had been in a coma for months when we met a photographer who’d come to do a book for the hospital. She and I really connected (even though minimally conscious, you could tell Margaret was intrigued by her camera!) and the infusion of artistic, philosophical conversation was incredibly elevating. We talked about telling Margaret’s story, in words and pictures. I believe it’s still to come. But along the way, bits of the story has been shared in the hospital book and in an issue of National Geographic.
I feel like the process is even more important than the product. The words that flowed out of me and the hopeful creative energy I felt was very sustaining. And I heard a lot of this in your episode. You have an important story to tell, but an even more important life to keep living best you can. You are brave and beautiful.
I loved this episode, and I’m really looking forward to seeing the film. It would be wonderful to come to Kent to see the premier, but it’s a long way to go. I love Eleanor’s voice and spirit.
Well, I'm crying again as Elanor predicted. I am deeply moved by your relationship. I can hardly wait for this movie to be available to the world. You both have so much to share and your relationship, history, synergy, creativity, bravery, honesty, and presence has come together to make something that I know will be very beautiful and enduring. I feel so happy and grateful.
Very interesting to hear about the experience. I can relate to your description of being "on" for camera or when talking to someone else. I hope there is a way to make the hidden reality visible.
In my experience when in those situations, the symptoms are only masked. I am distracted. But myalgic encephalomyelitis is a cruel companion. Ignore it at my own peril. It requires constant attention or gets very angry and makes me pay dearly.
These are some powerful and scary words, Colleen. I'm afraid that I have done too much ignoring it and I am paying dearly. The cruel companion is requiring this undisciplined guy to learn tremendous discipline.
The discipline required is something that is hard to explain.. and even harder to practice. I have tried to be accepting and compassionate with myself when the ideal of what my body requires clashes with enjoying life's moments outside routine. I do what I can when I can and try to be forgiving to myself when I choose to go outside my safe window.
Hopefully you regain baseline soon.
Finding tools to return to baseline helps offset some of my diverting from strict routine, but it has taken a long time to find those tools. Oral fluids, rest, protein, rest, iv fluids, rest, charcoal (carefully done away from meds), more rest. What used to take 4 to 6 days to recover is normally down to 2 or 3. Unless what I did exposed my immune system to viral/bacterial attack. Then it's at least 10 days...
Sorry about the long response.
Thanks for your efforts to be a window into this world.
H i Hal, really good episode. I can hardly wait for the film. I know it will be very good. Your illness has robbed a lot from you but it has also given you a lot. A new friend named Elenor for just one. Be ready to be swamped with attention when it is released. Save an autograph for me cause when you become more famous everyone will be wanting one. Thank you for your friendship. I love you.
Pat Hixson
You're the best, Pat. ❤️
This was one of my favorite episodes so far, Hal. What an extraordinary young woman Elanor is--poised, eloquent, sensitive, and wise beyond her years. The trust and admiration between you is palpable. I hope I have the opportunity to see the film!
This was incredibly powerful, Hal. I could relate to the artistic energy that’s activated in you through this exciting process with Elanor. Who, by the way, sounds super cool and I look forward to seeing her work.
My daughter Margaret had been in a coma for months when we met a photographer who’d come to do a book for the hospital. She and I really connected (even though minimally conscious, you could tell Margaret was intrigued by her camera!) and the infusion of artistic, philosophical conversation was incredibly elevating. We talked about telling Margaret’s story, in words and pictures. I believe it’s still to come. But along the way, bits of the story has been shared in the hospital book and in an issue of National Geographic.
I feel like the process is even more important than the product. The words that flowed out of me and the hopeful creative energy I felt was very sustaining. And I heard a lot of this in your episode. You have an important story to tell, but an even more important life to keep living best you can. You are brave and beautiful.
Looking forward to seeing the film and reading the book. What a wonderful friend Eleanor is. What a wonderful person you are.
Omg I love this so much! Can't wait to see the movie!!
I loved this episode, and I’m really looking forward to seeing the film. It would be wonderful to come to Kent to see the premier, but it’s a long way to go. I love Eleanor’s voice and spirit.
Well, I'm crying again as Elanor predicted. I am deeply moved by your relationship. I can hardly wait for this movie to be available to the world. You both have so much to share and your relationship, history, synergy, creativity, bravery, honesty, and presence has come together to make something that I know will be very beautiful and enduring. I feel so happy and grateful.
Looking forward to seeing the film. Love you, Hal!