Hal and Elanor, Part One

Living in a Body

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Hal and Elanor, Part One

Episode 69 -- A Heroic Journey

Hal Walker

and

Elanor Nadorff

Oct 21, 2023

Hi. Welcome to “Living in a Body.” The daughter of my best friend from childhood (see Georg and Hal) is here visiting. Elanor is a documentary film maker and we’re collaborating on a film about my life. I’ve really enjoyed having her here. We’re having a great time. Today’s episode is a conversation between us. PleASE Click the PLAY button above to hear the podcast version of this publication.

Hal and Elanor, Part One

Hal
Hi, everybody. I'm Hal. This is the “Living in a Body” podcast. And this is episode 69. So I am here with Elanor Nadorff and we're going to have a little conversation.

Elanor
Yes, we are. I'm really happy to be here with you, Hal.

Hal
Yay. Cool.

Elanor
So, Hal, what have you been thinking about lately?

Hal
Well, good question. Thanks for asking.

I've been thinking about a lot. I lay in my bed and I have all these ideas about what I want to say. And all these titles of episodes come up in my brain and lines that I want to add to a podcast. And then I go to my computer or my laptop and I'm overwhelmed with symptoms and I've been unable to write lately. So I want to talk about some of these ideas today.

I'll just say that in the last two weeks I've had a devastating downturn of symptoms and today was the most challenging day of my life.

Elanor
Could you talk a little bit more about what was challenging about it and what your symptoms are?

Hal
Sure, geez, it's so hard to describe.

Loud ringing in my ears, aching legs, weakness in my breathing, panting, pins and needles in my lungs. Just overall cold and clammy and very weak.

Elanor
So do you feel like your symptoms are heightened when you're going to do something, when you're sitting at your laptop? Is that what you're trying to say?

Hal
What I'm trying to say is I have all these ideas… I've written 68 episodes and my pattern is to work all week long on it and to edit and to revise and wordcraft and put hours of work into these ideas. And now when I open up my laptop with all these symptoms, I get overwhelmed with my own expectations. I get overwhelmed with wanting to make it perfect, and I’m having a hard time putting these ideas together. I mean I’m so overwhelmed with symptoms. The combination of being overwhelmed with symptoms and my own expectations, my high expectations, has been kind of paralyzing.

Elanor
Yeah. When you're overwhelmed like that, do you have something or someone in your mind that you're trying to please?

Hal
Good question. Thanks for asking.

I'm the only one I'm trying to please. I'm trying to please myself and I like things to be really excellent.

Elanor
I understand.

I do the same thing. I mean, of course, you know, I don't have the illness that you have, but I am an artist and I am constantly overwhelmed and paralyzed to do my filmmaking or writing or whatever it may be. And it's really, really hard. I understand.

Hal
So there's one thought I want to talk about that I've been having and it's this kind of heroic version of surviving this illness. Like I have this idea I've been given this great challenge and sometimes during the day I'll play around with the thought I love this challenge. I'll play around with the thought I love this challenge because it's making me grow in unimaginable ways and I can lead the way. I can lead the way. I can shine the light ahead for all those people following behind, living with this illness. I can be an example of someone who survives and creates a beautiful life. It's this kind of heroic idea that the hero's journey, I've been given this awesome challenge and I like when I'm in the float tank or something I'll think, I love this challenge… like keep it coming, God. Keep the challenge coming and I can but then the reality is. Ask me what the reality is.

Elanor
What is the reality?

Hal
The reality is I'm just a little kid. I'm just a little boy, a sensitive little boy that I don't think I can handle this. It's too intense. It's too much. It's so, it's so severe. And I know it could get even more severe. That's what I'm terrified of.

But, oh, the other reality is there's no one. I'm all alone in my room. There's no, I'm not leading a pack of people. I'm all alone in my room surviving this. And you know, once a week I put out a Substack and maybe inspire a few people or tell my story, but there's nothing heroic about this. This is my life that's disappearing in front of me. And I am struggling to make it a life. And I've got tons of fear, tons of grief.

Next question…

Elanor
Do you think if you were leading a pack of people, as you say, that would make it easier for you or harder?

Hal
I think it would be… I've often thought I could teach a class in living with chronic illness, living with severe chronic illness. Mine is becoming more severe. It's more like moderately severe, but I could lead a class. And in fact, one of my episodes that I've thought about writing is the tools for survival, because I have a lot of tools.

That's the crazy thing about this illness. I'm doing everything right. Like I am, my diet is immaculate. My thinking is immaculate. My grief process is immaculate. Whatever that means. My self care, like I am just like, I am doing so much self care, but the illness keeps getting worse.

Elanor
Yeah.

Hal
But the self care helps me survive.. and I cry a lot.

Elanor is here to do a documentary about me and I warned her ahead of time that, Elanor, I cry a lot.

Elanor
And I said, that's okay, Hal.

Hal
Yes.

What was another thought I've been having?

Oh yeah, the I'm sorry.

Elanor
Yeah.

Hal
Ask me that question.

Elanor
Remind me what it is. I'm sorry.

Hal
A lot of times when I tell people my story…

Elanor
Oh, yeah, I remember.

Hal
When I tell people my story, they say, oh, I'm so sorry, Hal.

Elanor
Hal, can I ask you something?

Hal
Sure.

Elanor
Did I say that to you when I saw you earlier?

Hal
No, you didn't.

Elanor
I don't think I did.

Hal
No, I don't think you did.

Elanor
Because, well, I'll finish what you're going to say and then I'll say what I think about it.

Hal
Well, um, Like this is my one life and I don't want sympathy. I want inspiration. I want like, I don't find like, if you say I'm sorry, that means my life is to be something sorry about. And I should feel sorry. And I do feel very sorry.

One of the things I often say to myself when I'm crying is I'm so sorry, Hal. I say, I love you so much. I'm so sorry. I'm so sorry.

That was kind of forced a little bit. But it's like I am just weeping and saying, I love you so much, Hal. I love you. I'm so sorry. It's so hard. So it's okay for me to say it to myself.

Elanor
Yeah.

Hal
But what I prefer is some sort of like, dude, go get this. Change your thinking now. Go get this. This is the only moment you have. This is not a moment to feel sorry about. This is a moment to live a beautiful life. And that's the training that my brain needs because I very easily go to how terrible this is.

Elanor
Yeah, I totally agree with you and I guess I haven't thought about it enough to say that, what you just said explicitly, but when I think about the film that we're making together, I think if I just felt sorry for you, I wouldn't want to make this film because that's not, you know, you're the hero of the film and you have such a vibrant life and you still have such a vibrant life and such a vibrant mind.

And, you know, that doesn't go away because of your illness. It changes. Of course, your life has changed so much, but you're still you.

Hal
My ability to create is seriously altered. And that's one of the most painful things, because I'm a non-stop creative. I just want to be creating. And the fact that I can't spend all week sitting up in my bed, wordcrafting, is a painful new reality that I'm facing.

The fact that I can't sit at the piano and write a song is a painful new reality. I mean I just got a concertina for about a week there, I was learning and then I had a crash and I'm no longer strong enough to sit and play the concertina.

So all this loss. Oh, that's the one thing in the heroic version of my life. I think, uh, dude, give me limitations. Give me more limitations. Just keep throwing the limitations at me and watch me beat… watch me live within the limitations, live extravagantly within the limitations.

But that's all bullshit. I mean, the reality is I'm laying in my bed crying most of the time.

Elanor
Yeah.

Hal
This has been fun, Elanor. Thanks. We've got just a couple more minutes, then we're going to wrap it up.

Elanor
Okay.

Hal
This is much easier than me talking to myself.

I tried this last week, just walking up to a microphone and talking my ideas. It's a whole different experience.

Elanor
Yeah, I wouldn't be able to do that.

Well, I think that kind of ties into what you're saying about your limitations now, is that, you know, I do want to acknowledge, of course, that it's devastating how much you've lost, like you said, just now about even your day to day stuff that you can't do that you could do last week. But at the same time, you know, your limitations give way to new things. And what we're doing right now is something new that maybe we wouldn't be doing if I had come last week.

Hal
Right. Good point. Yeah.

Who knows what's possible? God has a plan.

That's what my sponsor keeps telling me. I don't know what it means. But God has a plan and it's a beautiful plan. It might mean that I die, but it's still a beautiful plan.

Elanor
Yeah.

Hal
And you have... We all eventually die. Oh, that's the other one thing I wanted to talk. I'll wrap up with this. They call people living with ME/CFS the millions missing.

Elanor
Yeah.

Hal
And I find it so difficult to go missing. And I'm almost unwilling to go missing because I have such a, such an ego, such a sense of self that I'm attached to. And, but the reality is in the end, we all go missing. A couple of generations, we all go missing. And I'm just going missing a little bit sooner than I wanted to go missing. And I really do feel like a part of me is going missing. I mean, I'm not out in the world. I'm not... I'm missing at the elementary schools where I should be. I'm missing at my church service every Sunday where I used to be. And little by little I'm becoming one of the millions missing. It's very scary.

Elanor
Yeah, it is scary.

I mean, I also think you've already created such a huge legacy for yourself, more than most people ever do in a whole lifetime. Just with how much you've given to your community, you know, that stays with people forever. And how much you've documented online, that's going to be there forever. And also I think about your daughter, you know, you, there's a part of you in her, and she's a musician and she's doing her own thing now. And a lot of people don't have that.

Hal
Yeah, you're right. That's one of the big blessings in my life. Hi, Hallie.

Elanor, this has been so fun. I've enjoyed this conversation. We did it fast and we're done.

Elanor
We're done. We should do it again.

Hal
Now I'm going to play a game of Go.

Thanks for being here.

Elanor
Thanks for having me.

Hal

Have a good day, everybody.

By the way, enjoy living in that body of yours. You know, who knows how long it's going to be around. And, uh, yeah, we've got today and I will try to enjoy some of it myself, even with the pins and needles in my lungs.

Shit.

Love you guys.

Elanor
Bye.

Hal
Let's hope that got recorded.