Living in a Body
Living in a Body
Peggy and Hal
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Peggy and Hal

Episode 47 -- A Conversation between Two Long Haulers
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Hi. This week marks the one year anniversary of the launch of “Living in a Body.” Yay! I’m glad you’re here. Please click the play button above to listen to the conversation between me and my friend, Peggy Munson.

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Peggy and Hal

Hal
Hi, I'm Hal and this is Living in a Body. And we're doing something called “Peggy and Hal.” Peggy Munson and I are having a conversation over the course of a month through voice memos. And maybe we'll just start by having Peggy introduce herself. Hey, Peggy, how's it going? Would you just tell us like about a minute or so about yourself or a couple minutes? And we'll go from there. All right, everyone, Peggy Munson… my friend. She's sort of my big sister in this illness. I think of her as my big sister in this illness. We’re sister and brother in ME/CFS. Hi, Peggy.

Peggy
Hi, Hal. Well, I'm the Peggy half of this Peggy and Hal endeavor. And I really liked the name of that. By the way, I think it's very retro and fun. I first wanted to point out that I'm actually more of your little sister, I think, based on our ages, but we could go with something like fraternal twins. Let's say that.

Anyway, my name is Peggy Munson, I grew up in central Illinois in a town called Normal. And I expected to have a pretty average life. But I was, as you know, felled by this illness of ME/CFS, with a sudden viral onset when I was 23 years old. Up until that point, I did have a fairly normal life, although Normal has its share of oddities and quirks as one would expect from a town called Normal. And my father was actually a well known local radio personality. So I was forced to talk like this from a very young age. I had to do or not had to, I enjoyed doing radio commercials when I was quite young. I also worked at my mom's health food store growing up. So I actually was exposed to a lot of kind of notions about healing and mind body medicine. And I really came of age believing strongly that I could conquer anything that happened to me, health wise. Boy, was I delusional, as you know.

So I became sick at 23. I was a student at Oberlin College, about to graduate, about to walk at my commencement. I actually had graduated previously, or like six months earlier. So I was about to walk at the Spring Commencement because I had graduated in December of that previous year. And boy was it a topsy turvy experience trying to walk at graduation. It was hellish, I was suffering the early effects of this bizarre virus that started my ME/CFS, much like it has now with a lot of long COVID people, except without the language without the understanding, without any comprehension of what it was like to have this level of illness. As you know, it takes a long time to find the words because the symptoms are so bizarre, so extreme, so unusual. So unlike anything you really could have imagined before you contracted this illness.

So it took me a while and I had studied creative writing and aspire to be a writer, which I actually ended up being able to do to some degree. I could never go to graduate school to get the MFA I'd hoped to get. I was just too sick. But I have managed to write and publish books in the time since getting sick over 30 years ago, which was 1992 is the year that I got sick. And I published them all from bed, written them off from bed edited from bed, I published a book called Stricken which is an anthology of MECFS writings. That was over 20 years ago. And I followed that up with a book of poetry called Pathogenesis, which largely deals with a struggle with this illness.

And, I mean, I don't even know how to encapsulate 30 years into, you know, two minutes. As you know, it's an extraordinarily difficult life to live. But I'm very grateful for how I was raised in terms of having grown up in Normal, Illinois, where often the most fun thing to do was to drive around in an old Volkswagen and to hang out in cornfields quite literally, or parking lots. So, if I hadn't become accustomed to finding the extraordinary in small moments, which I did, I think it would be much more psychologically difficult to endure what I do now. Unfortunately, I'm pretty estranged from my family at this point. They got to the point of being absolutely unable to cope with my level of illness, which happens to many ME/CFS patients. So I would love to have a brother and I'm more than grateful to have met you, Hal.

Hal
Thanks for that, Peggy. Yeah, fraternal twin sounds good. I guess I was saying big sister just because I have so much respect for you and the way you have faced this illness for so long. I guess that's my next question is how do you do it? How do you survive? You know, it's like the greatest marathon. Not the greatest marathon, possibly the most terrifying marathon. It just doesn't end and I've recently taken a turn for the worse and facing just a day. I have to take it 15 minutes at a time. So what are the tricks? What are the tricks? What are the tools that you learned for surviving a day for thriving a month or surviving a year? I just need to know all the answers Peggy. Thanks.

Peggy
Hi, Hal, thank you for that question. I'm on the precipice of a crash right now. So I'm going to try to be as succinct as I can, but it's hard for me to not ramble. In thinking about the solutions, the tricks of dealing with this illness, I started thinking about that 12 Step expression H.A.L.T., which means hungry, angry, lonely, tired. You're supposed to self reflect on how each of these is impacting you before you take any rash action, or go down the rabbit hole of your own dark places in your head. And when I thought about that, I first thought well, we can eliminate the T because, you know, we're so bone crushingly exhaustingly fatigued, beyond imagination, that it doesn't even relate to the notion of tired, let's face it, and that's the back beat to our lives every day. So that one we can just cut off. And then I realized that then it spells H.A.L. So I was thinking about how this is like a corollary to the psychological challenge of dealing with this monotonous, devastating illness every day of our lives, right.

And hungry, you know, we just have this insatiable craving for our lives for life to be part of life. And that's the thing we're most restricted from. So for me, the address of that is number one, feeding yourself as much as possible with whatever gives you sustenance, whatever gives you that feeling and sensation of being alive. And I think we owe it to ourselves to care for ourselves in that way to indulge whatever it is that we can still do, or still enjoy. And it's just such an act of kindness. For me, at least, when I can give myself anything each day to feed that hunger. You know, which is not like a food hunger, really, I mean, sometimes it is. But usually, it's something else.

The other thing is, this illness gives us really two impossible choices. One of them is to live with unending and impossible deprivation, right? The second one is to push ourselves to do things that we really can't physically do. And then to experience this payback of extreme suffering and extreme worsening of symptoms. And over time, I've really learned that accepting the first one, accepting the deprivation and yet still trying to feed and sustain myself as much as possible on my own is actually the best way to prevent the second one, and one could call that pacing. But to me, it's really more intricate than that. It's more complicated. But it's also the act of kindness I give myself, because I know that when I go to those really dark places of this illness, it's because I'm in the second one, I've decided to push myself to do something or to experience something. And ultimately, the payback is not really worth it much of the time. So I just accept that I have to give up almost everything, which sounds terrible, but it is like the better of two terrible options for me.

In terms of angry, it's like we have this righteous anger and indignation. And then that turns to just grief and sorrow, just abject misery, you know, that we can ruminate on endlessly or at least I can. So the solution of that is really to, like push back against it, however possible. For me, and for you, a lot of that I think, is just doing a creative act, you know, doing something to transform that experience, or transform that anger in any way we can. And I find that to be a relief valve for a lot of that.

In terms of the loneliness, and the absolute isolation that we're forced to deal with, which is hellish. Of course. I was thinking about the advice given to a friend of mine when she lost her husband really way too young. And she was just dealing with this incredible loneliness. She missed his touch. She missed the companionship, of course. And so her therapist said to her, you just have to touch everything. You know, you have to offer somebody a hug on the street, you have to pet the dog, you have to touch a fence post and feel something and so that advice of just valuing it all the same and not making one thing so precious, to me is really helpful day to day. So I just try to really see every experience I get to have as of equal value, even if it's just looking out my window once a day and seeing nature or seeing something I can connect to, or having just one voicemail exchange with a person. I try to just see those all as being of equal value. And then I'm longing less for the things that I used to place a really high value on. So those are my pieces of advice and we'll call it H.A.L, for Hal. But my question for you Hal is what was the worst day or week or month of this illness that you can remember? What did it look like? And how is it different from today?

Hal
Hi, Peggy. Well, to be honest, this last week has been, I think one of the hardest weeks ever. It's been really hard. My symptoms are very severe. It's different than it was a year ago. A year ago, I was in a very different place. But this is really scary and feels like my body has settled into this particular way that I'm not liking at all.

But I really appreciate the way you expressed yourself in that last post. It's really, really, you're very easy to listen to and interesting. I'm glad that I met you. I'm glad we've been exchanging these messages for like, over a year now. A year and a half, we've been exchanging these messages. Finally, we're going public with it though. Well, I think I'm going to keep my message short. And I've got one more question for you.

Peggy, I appreciate that you're able to let go of everything. I mean, that's so radical. I'm not. I haven't been willing to let go of everything I try. I push myself and try to hang on to as much as I can. And I may be experiencing the consequences of that right now. I don't feel like I'm over pushing, but I do things and it feels you know, emotionally good. I'm glad that I do them. But then, I just keep getting worse. So anyway, I'm just fascinated by that. Let go of everything. Don't do anything in order to keep the keep the beast at bay. Thanks, Peggy. And look forward to hearing more. Bye

Peggy
Hi Hal. Well I'm sorry to hear you're in the jaws of a beast right now. Oh, man, I'm going to be brief because I'm waiting to see if my power will go out tonight. It's windy and it's going to be about seven degrees. So I hope this storm that's currently sweeping across the country has not taken out your power. It really terrifies me and makes me feel so vulnerable as a disabled person. Partly because I almost died in an ice storm in 2008, which I've mentioned, but I, you know, I do talk about it a lot, actually. But it was a terrifying experience. And it just underscores you know, how vulnerable we really are as people who like, can't get out, can't take care of a lot of our own business. And just very scary.

So anyway, about post-exertional malaise and your crash right now. You know, I think a lot of guidance on post exertional malaise is is really terrible, that's out there. I notice that they almost never mention the fact that crashes can last like months or years or permanently… become permanent. They don't really capture the gravity of a crash for somebody with ME/CFS. And also, it seems rare that people mentioned the delay period, like the 24 to 48 hour delay before a crash starts sometimes, which can push you into this mindset where you get really adrenalinized, and then you think, you know, everything's fine, you're gonna outrun it. You know, this time, it's not going to be like every other time. And then you just hit the ground even harder and so awful.

So I think for me, like the dread is so high now. Because my crashes have just gotten worse and worse over time. And because I've had some really catastrophic perma-crashes, as my friend Nicole termed it, where I've just never recovered from certain things. Like I've never recovered from the last time I traveled to Illinois 23 years ago, and I've never been able to do it again. So things like that, you know, like, I just have learned that a crash can absolutely make me more disabled forever, which is a terrible thing. So yeah, I mean, it's very scary. I don't think people can really imagine that just the terror that a crash induces or knowing that you're like falling into a really bad crash induces. So I just hope it's quick. And I hope that you can pull out soon, and I hope you have your power on. Okay, bye.

Hal
Hi, Peggy. Here I am again. Well, this qualifies definitely as the most difficult, most challenging Christmas ever. I can't believe how difficult it is. I spent most of the day by myself. My daughter was over in the morning and then I was on my own with this illness and mostly in bed. Actually, yesterday I got a little bit of relief, I was reading Hafiz. I was reading the book, “The Gift” by the ancient Sufi poet, Hafiz. And, for some reason, my symptoms just eased up a little bit and let me relax into that reading. I was grateful for that. But this morning, the day after Christmas, I'm just… my neurological symptoms are so intense. It's this crazy deep fog in my brain that doesn't allow me to do anything. I can't write anything. And it extends down to my whole body — this weak sort of void in my body. Anyway, Peggy, I am really having a rough time over here. So I'm going to pass it on to you to bring us a little bit of hope. All right. Merry Christmas. Bye.

Peggy
Hello Hal? Well I've been such a zombie for the past three days that I couldn't leave you a message. I hope that you're doing a little bit better. But man, this is brutal. It's brutal, how dangerous the holidays can be for us as people with M.E. I was thinking about this post-exertional brain fog period that I'm in thinking like, how do you describe the experience of not being able to describe the experience because there's like this weird meta thing that happens, right? Where we lose the ability of description, and poetic description, and being able to really convey what's happening in our bodies. And part of that is just that our brains are so heavily sabotaged by this illness. Not getting any blood flow, not getting any mitochondrial energy, whatever's going on. I mean, it's terrible, right?

Oh, man. So I hope you're feeling a little bit better Hal. My holiday was very mellow. But for me, you know, the worst thing is just having my, my brain get a little too excited, and my nervous system get a little too excited about basically anything. So celebration is so dangerous in that way. And I go into a state when I'm crashing, where I'm almost completely nonverbal and non communicative, as well as nonverbal. I’m nonverbal most of the time in my normal life, you know, I just have these little bursts where I can talk a little bit. But I'm one of those patients who has to really restrict that and can't do much of any communicating with people because it just does me in more than almost anything else, which absolutely sucks to the core. Because I'm a very social person. I think you are too.

I don't really love my own company. I mean, I do love my own company. You know, I'm learning to love my own company in the isolation but by and large, I would prefer other people's company. Not that my company is bad, it's actually very good. But you know, you know what I'm saying.

So, yes, the isolation is very hard to endure. The crash is even harder to endure. And I'm truly sorry you're having such a hard week. So I'm going to ask you as we approach the new year, what are you hoping for, for M.E. patients this year that is within reason. And what are you hoping for yourself this year? That is within reason.

Okay, Hal.  Feel better bye

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Hal
Hi Peggy. Yeah, sorry I haven't been in touch. It's been a really challenging few weeks. My daughter became engaged on New Year's Eve though. On a Brooklyn apartment rooftop. Her boyfriend called me that afternoon and asked for my blessing. So that was a really nice highlight of the month. But I've just been in a funk, Peggy. Yeah, I've been in a funk. God it's been… I’m so ill and night in the mornings. I'm so ill. And then I get a little bit of relief, a little bit of relief in the late afternoon. But my mindset has just been really not good and very, very sad and very negative. And just anyway, here's the question I want to ask you. What does a typical day look like for you? I'll answer the question. Maybe myself too, but I'm really curious. I don't have a sense of what your typical day looks like. Lately for me, I get up I wake up way too early. And I feel very ill in the morning. Oh my god. And then right around 11 or 11:30 I sorta am able to get out of bed. Have some lunch.

See, I'm even just too tired, too exhausted to finish this voice memo. Anyway, I look forward to hearing from you. Thanks for checking in on me. All right, bye.

Peggy
Hi, Hal, it was really good to hear from you. And I'm sorry that you're still having such a rough time. But I'm very excited about hearing about your daughter getting engaged. That's really great news. And I wish her all the happiness in the world. And her fiance, and it's very, very sweet that he called to ask for your blessing, too. I love that.

So, how do I spend a day?

I started trying to leave you a message in the middle of the night because I was like, you know, the middle of the night is where the action really happens for me, because I'm like, lying awake, and just kind of trying to fall back asleep often, and my brain sort of wakes up, you know, then, but I still am not functional or anything.

So my days are really, like being in airplane mode or something, you know, Everything is just really downgraded. I have to really disconnect from all of the energy out there, you know, from people, places and things.  And I just can't think very clearly, I mean, that's, you know, really one of my predominant symptoms is just, I'm in a state of drift in my brain, you know, often.

Yeah, I mean, on a good day, I get up and usually move to a different room in my house, that's not my bedroom. But in every room in my house, I have an immediate place to lie down. So like my house is like a series of beds, you know. And it's always been that way, the whole time I've had this illness even when I lived on a really small apartment, you know, I just literally had a mattress in my living room, there was like a very small living room and then you know, my bedroom, there was actually this one small other room that I had like another little teeny little futon. So that's been my whole thing is just bed to bed to bed. And then in the summer, I can go bed to bed to bed to outdoors on my deck where I have an antigravity chair. So I'm like, you know, that's my outdoor bed. I also now actually have an outdoor like big bench that's down in my garden. So if I can get down there, then I have this big bench to lay down on and it's really nice.

So that's my day, it's a bed hopping sort of experience. And a lot of drifting in my brain. I really have next to no social contact, except for with my caregiver. And that is generally nonverbal most of the time, like I'm writing notes or texting or whatever else.

So, yeah, I mean, I'm just lying down quite a lot. So how about you Hal. My question for you, I keep thinking of like, you know, what keeps me going and part is that I still imagine myself being well again, in the future, even though it seems totally improbable by now. You know, it may never happen in my lifetime, but I'm gonna be hugely disappointed if I don't get to live before I die.

I’m wondering if you do that and also what does that look like for you? You know, what are the like the top five things that you would immediately do if you got better.

Hal
The top five things that I would have immediately do if I were healthy. Geez, it wouldn't, it wouldn't be much. I would go outside and walk that mile loop that I love walking, I would go to a yoga class I would ride my scooter over to see my mom and I would give my mom a big hug and say, Mom, I'm better, I feel better. And then I would come home and I would skip up and down the stairs. And I would play some music, I'd practice the piano, practice the khaen for like, five hours today. And then I would plan a trip in my car to see my daughter. And we would spend the day in New York City and I would play the khaen in Greenwich Village and Washington Square and see how many people recognize me from Tik Tok. And my daughter and I would walk all over New York City. And then I would drive down to Florida to see a couple of friends and drive out to California to see a couple of friends. That's what I would do. I would just be on a constant road trip. I would sell my house. No, I'm not going to sell my house. I want my house here. But basically, I would just do all the normal little things in life. But instead, here I am in bed. And I'm actually going out with a couple of friends tonight to dinner, a couple of male friends. And it's it's gonna be hard because I'm right at the verge, right at the edge of whether or not this makes sense to be doing. But I figure I have to eat so I might bring ear plugs so the noise isn't too loud. Anyway, thanks, Peggy. Nice talking with you. Bye.

Peggy
Hi Hal well my five things would be quite a bit like yours actually, there's a lot of overlap here. But first and foremost, I would just like to experience a normal day, just a full day of energy like, packed full of the things that I used to do before I got sick. So, I would take a really long bike ride, I still have my bike from before I got sick, but I have not been able to do this in over 30 years. So I’d just take off, you know, and ride and ride and ride until I was exhausted. But normal exhausted, you know. And then I would have like a delicious lunch somewhere and meet some friends and have some wonderful food and just enjoy being alive, like visit some nature spots, go into some stores, go to a library, all those things. I just miss everything.

Probably go to a live show of some kind. Like I would probably go to a reading or something. Although I would love to see some live music too. But a poetry reading would be great. Just anything.

And then after that one full, wonderful day, I would get the hell out of Massachusetts, where I've been trapped for almost 20 years because I've been unable to travel or move. And I would take off in an RV and just go revisit all of the places in the US that I had positive experiences with before I got sick. So I would definitely stop in Ohio and say hello. Because as you know, I went to Oberlin College, and I used to pass through Ohio all the time, and be in Ohio. And it's right on the way to my hometown in Illinois, where I would go and visit old friends and go see my grandmother's grave and my aunt's grave. And all the people who've passed in this time that I haven't been able to get home even for funerals or anything else, which sounds dark, but I don't even mean it that way. Like I would just really enjoy being there and having that connection.

The rest of my family basically treats me like I'm dead now. So they would be completely surprised if they saw me walking around. They all live there. So then I would go out west just like you and I'd see some friends in California and like Pacific Northwest and other places. And then I'd go like places I've never been, you know, I travel around the world places I never got to go.

I'd love to study some field that I never studied before. You know, I never really got to have a career because I got sick so young. And I was always pursuing artsy things. So it'd be interesting to just dive right into like a medical career or something. I've spent so many years studying my own illness and do something that helped other people. That would be really cool. So, yeah, I just want to like be out in nature and see beautiful things and I don't know, ride a horse, whatever. So, so much, so much life that I would love to experience still.

Oh man, I hope we get there Hal and I hope you're doing a little bit better. And I'm going to toss it over to you for the next question. Okay, bye bye.

Hal
Hey, Peggy. So I'm thinking we should wrap this conversation up maybe on some sort of hopeful note. Oh, it's so hard. I just want to say it's so hard. This is the hardest thing I've ever done surviving this. The combination of this illness and heartbreak and loneliness and recovery from addiction — all these things just like it's so raw. I’m so raw and so scared but someday I hope to meet you, Peggy. I really hope that we get to meet in person. That's got to happen. I'd be tempted just to get in my car and drive like a couple hours at a time. And just to drive to your house. I could probably survive. I need a caregiver though on the way there. But it's been good. I've enjoyed getting to know you but with these voice memos over the last couple of years. All right, Peggy. Let me know what you what can you… give us some final words? All right. Bye bye.

Peggy
Hi, Hal, well, I'm appropriately wiped out for our final episode here. So I might sound a little bit flat, which I do sometimes when I'm really sick. But I would absolutely love it if you could come out here, by the way, I would love to meet you in person. And I know it would probably take like creeping very slowly across Pennsylvania, which sounds in itself kind of terrifying. Let's face it. But, but yeah, if you could get out here, that would be amazing, especially with a caregiver. So hopefully, we can pull that off someday. I also just really value the fact that we have these, you know, really deep, wonderful conversations. Anyway, even though we've never met in person.

And, you know, a friend told me like 15 years ago, she was like, you know, on some level, you should be grateful that you're not out in the world, Peggy, because it's terrifying out there right now. It's so violent, it's getting worse and worse, people are rude. People are awful. The world is just getting meaner and meaner, you know. And of course, it didn't land very well, because I'm dying to get out there. I would love to be out there in the world.

However, I am super grateful that we have this kind of insider community of people who build each other up and help each other get through this extremely traumatizing and terrifying event that we're enduring day after day after day. And that we can at least support each other because I've met some amazing, creative, vibrant, wonderful people who've just disappeared from the world. So I also appreciate that you're raising awareness to that fact and sort of profiling people in the community because the world just doesn't have access to very many of us and they should. So yes, Hal I and I totally relate to the difficult year of grief. It has not been my very worst year and therefore I can handle it. But I know it's been an extremely hard year for you. So I hope going forward we can just keep being in each other's lives and keep building each other up and getting through this day by day. Really appreciate you Hal and thank you for sharing this Peggy and Hal journey with other people. Okay, bye.

Hal
Well. That’s episode 47 for you. Thanks so much Peggy. It was great talking with you. Let’s keep it going on the voice memos. Everybody, have a great Saturday. Have a good week. And remember… enjoy living in that body of yours. Enjoy every moment that you can. Alright? Bye. Thank you. I love you. I miss you. Bye. Hal

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Living in a Body
Living in a Body
Hal Walker, Ohio musician and writer living with severe ME/CFS, weaves music, stories and community from his bed.
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