19 Comments
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Colleen Steckel: ME-ICC Info's avatar

Interesting discussion. I have thought about many of the things you discussed.

I think one thing missing from the narrative about living in a body affected by Myalgic Encephalomyelitis is those around us can't grasp how many battles we overcome daily. I amaze myself that I am still here...

I no longer hope they will understand the full reality since the only way they could would be to have this experience. I don't wish this on anyone.

I do what I can, when I can... and that is good enough.

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Hal Walker's avatar

thank you Colleen. I hear you. h

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Ann B's avatar

Hi Hal and Elanor, I was waiting for this episode when Elanor told me you were posting it Hal. This morning while sitting in the opticians waiting room, I began to read the transcript and I cried. (I listened to it on my way back home). I don't know fully why I cried, but I can say what some of it is for me. I am so touched and feel so happy that you are including Elanor in your life Hal, and working with her to tell something about your story in the form of a film. I think this takes whatever degree of trust and openness to the process when letting someone in for such a meaningful and personal project. I know that my tears are also tears of love, awe and relief to hear Elanor talking with you. The potency of her questions and the space she is giving for you with your responses impacts me in a way that I don't have enough words for but I got another dose of evidence that if something happened where I left this body that I am living in sooner than anyone wants me to, I know that Elanor has what she needs to continue on in her body in her life. I knew this already but whenever I experience evidence of it I am brought to my knees, inside, in a way that I crave. It is so reassuring. So, I am sure whatever you create together will be as beautiful as you both are to me right now.

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Hal Walker's avatar

Hi Ann! Elanor and I are having a great time. I was just telling her that what I need is a live-in filmmaker. It's great to be able to rest as much as I do and come downstairs and do some filming. :).

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Georg's avatar

Going for a long adventure run for you today, Hal, to enjoy the body and have an out-of-body experience for you. Hal, your laugh and chuckle is so robust and from another world. It will never diminish. Elanor, thanks for making so much space for Hal to keep exploring.

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Hal Walker's avatar

HI Georg. Your adventure run sounds so fun! I'm really enjoying seeing so much of you in Elanor. She was looking at me earlier and I felt like it was you looking at me. Amazing.

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Tricia Gourley's avatar

Lovin you Hal ❤️🙏🏼

Sending a big hug and smile from Colorado.

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Hal Walker's avatar

Thank you, sister. ❤️

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Clarissa J's avatar

Dear Hal, This was very interesting. Yesterday I was writing a poem at Lit Youngstown , its titled "I'm Sorry". Yes of all things you spoke of this very same topic today! I tried to remember how many times I repeated these words, now I continue to think & try to remember!

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Margot Milcetich's avatar

Good to have a person there. Feels good. Thanks hal and Eleanor.

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Hal Walker's avatar

Yes. It's great to have such youthful talent around. We're having a good time making a movie about me, my favorite subject. :)

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Peggy Gentle's avatar

Just got off a counseling televisit and found your post. Thank you!

I have a neurological disorder called dystonia. In a nutshell, my muscles tense and tremor uncontrollably. The part of my brain that's affected also generates anxiety. Over the past few months the symptoms have ramped up and are making it hard for me to do the things I want to do. I am retired, so like you, I have a lot of time. I try to focus on creating art or doing something creative. I hear you about having the ideas, but not being able to put them into practice. Tres frustrating!!!!

My counselor gave me a good bit of advice this morning. Dystonia is aggravated by stress. It tends to become a vicious cycle of stress which aggravates the anxiety, which causes more stress. She said that when the demand exceeds the resources, stress is the result. So working on being more realistic with what I demand of myself, learning and accepting my limits is essential.

Thank you for your writings. I wish you peacefulness.

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Hal Walker's avatar

Yes. the vicious cycle of stress -> anxiety -> symptoms ... is so challenging. Thank you for sharing, Peggy. H

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Linda J Sack's avatar

Could you lead a class in living with chronic illness? It sounds like a great idea and many people would benefit

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Pat Hixson's avatar

Great recording Hal and Elenor. It says part 1. I'll anxiously wait for part 2. I believe in a healing God and I will continue to ask for healing for you. I'm very blessed to know you. Pat Hixson

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Shaz's avatar

Hal, thanks for this. As ever, your honest documenting of your experiences with this horrid condition speak to me very much. None of us want to go missing.

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Janee Krimmer's avatar

Good to hear your voice and to meet Elanor. I am glad she can help you get these communications out. It is always a bit of an awakening to realize there is more than one way to get something done.

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Margot Milcetich's avatar

Sorry, I spelled Elanor correctly but, you know, auto spell.

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