Hi. Welcome to “Living in a Body.” My guest on today’s episode is the wonderful
. I hope you’ll help me welcome her to Substack by checking out her very first post below, “Saved.” So that you can enjoy her brilliant Warwickshire English accent, I recommend listening to the VoiceOver option that she provides. Thank you for being here! ❤️ Hal
Quality of Life
I've been thinking about quality of life lately. I read something about it on the internet once. It was a statistic about the quality of life of people living with a variety of chronic illnesses. I remember it said that people living with severe ME/CFS had the lowest quality of life of all the major illnesses. That's the one I live with — myalgic encephalo-fuckin’-myelitis. Yep... the severe version. I share this statistic with you not as a fact, not as something I've researched, but as something I read on the internet once. (lol)
I laugh, but it's not a laughing matter. I've lived it and I've heard the stories of people that tell me it's probably true. This illness is a beast and it's brought people to the lowest quality of life you could imagine. Searching for it now, it looks like it was a Danish study done years ago. (Read more here) It concluded that the quality of life of ME/CFS patients is significantly lower than the population mean and it’s the lowest of all compared conditions.
That statistic stuck with me all these years. It hung around in the back of my head as the scary truth. I never would have imagined that I'd have to someday live it. But now here I am, mostly bedbound, sicker than ever and I have an urge to defend my life against that statistic. I want to be the one to prove they were wrong. So I ask, what is it that makes a quality of life?
If you've been hanging around here for a while, you already know I've been living with ME/CFS for many years, since 1991. And I lived a very full life and I always knew in the back of my mind this statistic. I knew about the people living with severe— living in the dark, unable to leave their bed, unable to eat, unable to speak, unable to take visitors, unable to turn over in bed. I knew about these people, but I went on and lived my full, vibrant, active life with mild to moderate symptoms, always pushing the boundaries, thinking somehow I was invincible.
My quality of life was fairly good looking back. On the outside, I had everything. From where I lie now, I had nothing to complain about. But I struggled on the inside. On the inside, I was striving for more, grasping for more, hungry for more, unsatisfied. I carried around a low grade sense that it's just not enough. I was always trying to do more and I was always tired. On the spectrum of qualities of life, mine wasn't as good as it probably should’a been. As the title of this episode says, quality of life is an inside job. I believe it.
As my illness has become more severe, as my limitations and my disability become greater, I'm interested in the idea of my quality of life actually improving during this time. Like, as the symptoms get worse, the quality of my life could actually go up (lol) … kind of like my friend Emma. We'll hear from her in a minute.
Watching the quality of my life improve through worsening illness is a fascinating challenge to me. And I know it's an inside job. It's all in how you look at it, right? What really is quality of life? Is it being able to have all the things I want? Is it being able to do all the things I want to do? Go all the places I want to go? Eat all the foods I want to eat? Buy all the things I want to buy? Have just the right combination of family, friends and community? What is quality of life?
I'm sure there are all kinds of studies. I'm sure there's a whole encyclopedia article on it, but I gave away my encyclopedias years ago. So I'm just riffing a little bit here on the concept of “what is quality of life?”. I ask you, what defines your quality of life? What improves your quality of life?
I asked my girlfriend Emma what quality of life is for her, and she gave the answer that I wanted to give. She said it much more eloquently than I could. So here's
. She's been living with severe M.E. for many years now. And if you can't tell by her accent, I'll let you know she's from Warwickshire. Warwickshire in England.
Hal: Good morning, my dear Emma. Beautiful weather today, is it not? So what's the quality of life in Warwickshire?
Emma: Good morning.
It was such an interesting thing you said about quality of life yesterday. I just wanted to comment on it because I was thinking… quality of life for me is about connection to my source, that - kind of like - my divine being, where there's that flow of energy, which feels like complete contentment, a very like subtle joy, just this feeling of being complete and whole and there's no needing in it. There's no wanting. It's full and it's beautiful. And I feel sure that this is what is meant by the word Love.
Because it holds everything and it holds everyone and it's at the source of everybody's experience — once the noise of the mind is quieted. And I find that in my life, before finding this, or even now when I'm looking outside of myself for activities or something I think I want or need, to have quality of life in a human egoic sense. You know, what can I do to make my experience better? What can I have to make my experience better? Who can I know to enrich my life and make me feel good about myself? All of those things I find are poor substitutes and they never last. I'm always left wanting, even if it's their most fullest, richest, explosively, wonderfully joyous experience in that moment. It never stays that way, and there's no solidity there. There's no ground there. There's nothing to rely on because everything is always changing.
And I feel like once I have something that I think I want which will bring me quality of life… like I’ve got a mobility aid, this bike that I bought, a walking bike. And I was like, “Yeah, I'm going to get this.” I spent all of my savings on it. It was a big purchase for me. And it came and I had all these visions of how it is going to improve my life, and I've been to unwell to use it. But even when I got it, like the moment I got it, the thrill had gone and I was immediately looking for the next thing to improve the quality of my life. What's the next thing?
Do you know what I mean? And then I got a mobility scooter. Yeah, wonderful, it's brought me enrichment. And I definitely see that. But, yeah… it's on so many different levels, isn't it? Like, on a human level, I definitely have enrichment from having a mobility scooter. But I think for me, quality of life always just comes back to how connected to that divine stream of Source Energy am I? Because that can't be taken away, and it can only be deepened. My experience of it just only deepens and deepens and deepens and it doesn't matter if I can't go out on my scooter for relief, to improve the physical quality of my life by getting me outside the house, by letting me meet strangers and have little conversations, although that is a huge enrichment in my life. The days that I can't go out, which are more numerous than the ones that I can, there's there's no disappointment or sadness there, because I tap straight into the beauty of what is, and I'm full.
So yeah, absolutely, for me, quality of life is dependent on being connected to source, and I think that's one of the biggest… well, it changed my life. It has changed my life. It's revolutionized my life. And so, yeah, that's all I want to say. Anyway…
Hal: Thank you so much, Emma. That was really beautiful. You basically said what I wanted to say — more eloquently, though. I am left speechless. (lol) Let's see. What else could I possibly add to that? Hold on. I'll think about it.
Here's what I'm gonna say.
Quality of life is a judgment and it's my thinking that does the judging. So it seems to me that quality of life is based in a large part on my attitude, on my thinking. To what extent am I saying “yes” to this moment, to what extent am I smiling and loving what is — with all the discomfort, with all the things that I wish were different, with all the feelings, with all the imperfections and all the uncertainties, all the everything. To what extent am I a smiling witness saying “yes” to it all?
What is the quality of my being in this moment? To what extent am I welcoming all the visitors into my circle with love? To what extent am I practicing kindness and honesty and patience and generosity. That's quality of life. Quality of life is in the being. It's here and now. It occurs to me that quality of life is a practice.
So even if I'm unable to go outside, even if I spend most of the day with an eye mask and silencing headphones on, even if I have limited human contact, even if I have non-stop loud ringing in my ears and debilitating weakness in my arms and my legs and a weird, prickly bubbling that's happening constantly in my belly, I can still be the guy with the best quality of life in Ohio. All just by watching what is, with a smile, a cry, a whimper or a laugh. (lol)
Is it true? I think I'm finding out that it is. Of course, there are a lot of days I'd resent myself saying all this. When the discomfort is so great, when I feel so alone and my brain is taken over by a scary, numb kind of fucked-ness, when my nervous system is so out of whack and it takes on a nightmarish kind of hijacked life of its own and I can see nothing but decline in my future. There have been times when the discomfort is so great and I can't believe that this is really my life.
But even then, I keep coming back to the smile. I keep coming back to the surrender. I keep coming back to be the witness. I keep muddling through and something changes. And here I am now in a mood, trying to prove that even with these circumstances, the quality of my life is as good, if not better than ever.
Yeah right, Hal. (lol) Alright. But there’s something else I gotta say.
I'm a white man with a MacBook Pro and an iPad Plus who has money in the bank, who has two wheelchairs, a stair lift and a full time caregiver, who owns his own home with a beautiful front porch in a relatively quiet neighborhood. My needs are well met. In the realm of Maslow's hierarchy of needs, I'm doing quite well. I know everyone doesn't have this kind of privilege and I know it has a profound impact on my quality of life. In the material world, I'm a blessed man. So let’s keep that in mind as I'm saying all this highfalutin stuff.
You know, I'm able to lie in this very peaceful place with a window, the sun shining through the window, exploring the inner world of Hal Walker, the inner world of “beyond Hal Walker,” the inner world of not-changing-anything. I'm more and more convinced that the quality of my life is directly proportionate to my ability to rest in what is. My ability to be still and listen for that voice of God.
You know, I can see the blue sky right now. The birds have been starting to sing lately. I could hear the geese flying by my house earlier today. And yesterday, I was able to sit on the back porch and watch three cardinals playing in the pine tree. There's peace in my town. There's peace in my room. There's peace in my home. If you ask me, that's a pretty good quality of life. 65% of me, maybe even 75% is grasping for nothing, just soaking in the contentment. I wish the same for you.
Thanks so much for being here. Thanks for listening, thanks for reading. I really appreciate you.
Hey, I think that's it for today. Don't forget! You've got a body. Go live in it. Wherever you are, whatever your circumstances, practice saying yes. Practice smiling and saying yes. And loving every minute of it. Then watch what happens to your quality of life. I wish you well. Enjoy Saturday. Enjoy whatever day it is. I'll see you next time. All right.
Signing off. I love you. Bye, bye.
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