Hey, it's Anna. Before we get started, I want to let you know that this episode includes some discussion of suicidal thoughts. It happens about 40 minutes in, if you’d like to skip.
MASON EARLE: I really think that chronic illness can really make us our best selves. It softens us and gives us so much empathy.
ANNA SALE: You feel like that right now, that you're the best version of yourself?
ME: Yes, probably, but people who've been sick much longer than me say, "Yeah, I felt that way for about the first three years. Now, I just don't care and just don't want to be sick anymore."
ME: It's just like, "Yeah, you know, I'm kind of starting to see that a little bit." The gratitude is like the initial chronic illness phase, apparently. I'm, I'm on the tail end of it, I think.
This is Death, Sex & Money, the show from WNYC about the things we think about a lot... and need to talk about more.
I'm Anna Sale.
Mason Earle spends most of his day in bed. That's where he was when I reached him over FaceTime.
AS: Hey, Mason, how are you doing?
ME: Yes, I'm all right. How are you?
AS: Good. You might notice this is like a party.
Mason is 32, and he has a chronic illness called myalgic encephalomyelitis, or ME/CFS, commonly called chronic fatigue syndrome. ME/CFS is a complex illness with a wide variety of symptoms, including muscle and joint pain, memory issues, trouble sleeping, and extreme fatigue. There's no known cure.
AS: I'm just going to let you guide me on how you're observing your energy level and when you want to wrap up and then we can pick up again tomorrow.
ME: Yes, I've usually got a pretty solid 30 to 40 minute window where I can be myself, and use my voice, and all that good stuff.
Before Mason got sick, he was a professional rock climber. He climbed all over the world, was featured in major climbing magazines, and was paid by corporate sponsors, including Eddie Bauer.
But today, Mason spends most of his time at home. He lives in Reno, Nevada with his wife, Ally. He can’t climb anymore. He can’t do much of anything.
And while there’s still a lot that medical professionals are learning about ME/CFS, people have noticed its similarities to long-haul COVID, which also includes chronic symptoms like fatigue and brain fog.
Mason has been dealing with these symptoms... for the past three years.
AS: Are you in a comfortable position now? Are you ready to go?
ME: I sure am. Yes, I'm laying down on my side with the phone resting on my ear with an eye mask on. [chuckles]
AS: It's funny because when we start talking, you bring the phone and I can see like I'm going into your ear. It's as if we're entering your internal monologue a little bit.
ME: That's perfect.
AS: Which is like it feels spot-on. It feels just right. About how much time do you spend in that position a day?
ME: Um, it varies. Uh, yeah, at sort of the, you know, the peak severity of my illness, you know, probably 20, 22 hours thereabouts.
AS: 22 hours of a 24-hour day?
ME: Yeah, yep. Um, but right now, um probably closer to, uh,—I'm spending maybe 16 hours a day in bed, which feels like freedom comparatively. But still not al, I wouldn't call it acceptable, not an acceptable amount of time out of bed, so. I just, uh, with ME/CFS, such a big part of it is this sort of sensory overload, um, you know, being really hypersensitive to noise and light.
AS: Hmm. And I imagine it can be hard to put words to it, but if you were to describe what it feels like to have light come in in a way that feels uncomfortable, what's the feeling, the physical feeling that doesn't feel pleasant?
ME: I mean, if you've ever had a bad concussion or a hangover, that sort of similar, the sort of the post-concussion phase is probably the closest where just, you know, your brain just can't handle it. You know, it's, it can be quite excruciating, the same with noise. Like right now, um, you know, I'll, I'll be sitting in my living room and I'll see my wife outside, and I'll know that she's about to open the door, but it still can't prepare me. The second that door opens and there's a bit of a screech and that noise, you know, it's like this little moment that my body goes into shock. It's just like the nervous system being totally overwhelmed, um, or something. No one's quite sure.
AS: Yeah, it just feels like too much. It's like—
ME: Yes, it's too much.
Mason spent most of his time outdoors, before he was diagnosed with ME/CFS. He first started rock climbing as a kid growing up in Massachusetts, but he didn’t get serious about it until he moved out to Colorado for college.
Eventually, Mason dropped out of college to focus on climbing. He worked at Yosemite, and took on odd jobs so he could climb as much as possible, and his dedication paid off. At 23, Mason was signed by Eddie Bauer—he laughingly called it a “gravy train” that paid for his climbing trips all around the world.
ME: From about the time I was 18 to, um, 29. Um, you know, a solid 10 years. Um, climbing was my life. Um, yeah. You know, I really, something I'm grateful for is that I really got to live all my climbing dreams.
AS: What for you... when you were climbing, what drew you to it? Why did you want to dedicate so much of your life to it?
ME: I'm not really sure. I think, um, you know, it's a lot of things. I love being outside. Most of my climbing that I did was in the Utah desert. And, I remember the first time I went to the Utah desert, and seeing that red sandstone, and, you know, the junipers, and the piñons, and the ephedra, and the sagebrush, and the cactus. I'd never, you know, it was almost this religious experience. I've never been somewhere like that. Immediately, I knew, "Wow, this is the place that I need to spend some time here." I quickly started climbing more and definitely had a natural talent for it and so that also made it really appealing. Oh, wow, for once in my life, I'm good at something. [chuckles]
AS: Really, is that how it felt? Were there a lot of things growing up that you didn't feel like came naturally?
ME: Um, I, I was always a really bad student. And so there was kind of this, uh, this, um, this need to prove myself. Like, you know, I'm not worthless. I want to show the world what I can do.
AS: What was the specialty that you really developed as a rock climber? What did you become really good at?
ME: My thing's crack climbing, which is, uh, exactly what it sounds. Certain types of rock, granite, sandstone mostly, um, will form these perfect cracks in them that, um, will go from the ground and soar up hundreds of feet, sometimes thousands of feet. And when you're crack climbing, you're just using your hands, or your fingers, or your fists, or even your whole body sometime to wedge into the crack, depending on how big it is. And you use that for, uh, to hold yourself onto the wall.
AS: Would you wear the same kind of ropes and safety harnesses when you're crack climbing?
ME: Yeah. I mean, I've done plenty of free soloing as well, but that, that was, that's, you know, a rare treat.
AS: It was a treat?
ME: Free soloing?
AS: Yeah, no, I know, but for you, it felt like a treat?
ME: Yean, I mean it just takes everything to the next level, obviously, because the stakes are extremely high. And you only do it on terrain that you're extremely comfortable on.
AS: And for you, when you would choose to free solo, when you were like, "I'm going to have this special treat," like was it because... like when would you notice that you wanted to push yourself to do that and take it up? Like what was the motivation?
ME: To be honest, sometimes it just comes out of a place of boredom and having nothing better to do. I, I can think of plenty of times I was hanging around Yosemite Valley, no one to climb with that afternoon, and I think, "Oh, gosh, I should go run a lap up Selaginella. That would be nice." [chuckles]
AS: I'm struck that you said, when you were bored, you would do it. Like you would ratchet up the risk and do this thing, you know, um that's—How do you think of that now? What used to be boring to you?
ME: Yeah. Um, you know, I was so desperate to fill up every minute of my day with excitement and productivity and doing things. Uh, downtime just seemed like a waste of time. Um, obviously, I'm getting, getting a heavy dose of that right now. You know, actually, kind of an interesting thing that I've noticed with this illness is that it has in a way satisfied this craving that I had. With climbing, um, I always craved this experience of, you know, the ultimate climb where you had to fully commit and, and relinquish all control. I could just never quite take that next step to have a climb like that. It seemed like too much for me. And in a lot of ways, this... experience of being sick has, um, kind of satisfied that craving because this is the ultimate experience of commitment, and not having control, and the only way out is through.
Mason started feeling sick in the spring of 2018. He was about to turn 30 and was planning his wedding to Ally later that summer. He was on a trip to Yosemite with a climbing friend, and he started feeling off. He told me it came on suddenly, that it felt like the flu, but without coughing or congestion.
At first, Mason wasn't worried. He thought he get better once he got home. But then, he didn't.
ME: The first few months of being sick I was still able to limp along through life. I wasn't, I recognized that I wasn't able to exercise, that exercise had pretty extreme, um, consequences, which was, you know, terrifying to me. But I still had all my cognitive function, and I could socialize and, you know, go out to dinner, and work on projects around the house. And then right around my 30th birthday, my condition became much worse and kind of more or less what it's been like since. It was this, this, uh, this several-week period that was, um, it was awful. You know, I went from you know, sitting in my living room, all I can do is sit here and watch a TV show to—Oh, my gosh, I can't look at my computer screen anymore. It hurts my eyes too much. So then, you know, I was reading a book. And then all of the sudden, I realized I cannot look at these pages anymore. I cannot read another word. My brain feels like it's about to explode and I had to put my book down. And that was sort of this moment that I felt like I was kind of leaving... uh, very much leaving life as I knew it behind and sailing off towards the unknown horizon.
AS: It's really striking to me. You know, you have this moment that you can remember as a very clear before and after of when you sort of, um... surrendered to what your constraints were.
ME: Yeah, I don't know if I surrendered exactly at that moment because I never felt more terrified and hopeless. Um, it was the first moment in my life where I really felt there was no safety net underneath me. I grew up in, you know, a, uh, nice suburb of Boston, Massachusetts. I grew up with, um, you know, was never scared of not having enough, never afraid that I wasn't going to be able to receive good, uh, medical treatment if I ever needed it. All of a sudden, here I was in a situation where there was nobody who could help me. There wasn't anybody I could turn to and say, "I'm out of options. I need help here."
AS: How do you remember your wedding?
ME: Um, it was actually right, just about three or four weeks before things start getting really bad. And it was this really melancholy time for me because I knew I was really sick, and it sort of prevented me from really kind of being myself at the wedding. And, um, we had an amazing wedding. You know, we were, Ally and I were there with all our best friends and family on a beautiful summer day in Utah. And.. the, the way I describe it is I sort of felt like I was getting to attend my funeral. Like, there were all the people that I love most in the world, and I was, you know, felt myself sort of slowly turning into this ghost.
AS: Did you discuss at all when you first got sick whether delaying the wedding, or delaying getting married, or not getting married?
ME: No. Yeah, because we just assumed I was going to get better, and I wasn't that sick. I was well enough that I knew I'd be able to pull it off, but, you know, I crossed the finish line on that in a flaming, burning wreckage.
AS: You mean "flaming, burning wreckage," like your, youy body was just wrecked after? Is that what you mean?
ME: Yeah, yeah. My body was wrecked after.
AS: It strikes me like as you've talked about sort of the realization and the ways your illness came on suddenly and then the depths of your illness kind of hit you, I'm, I'm... it sounds the way you're telling me, I'm picturing you kind of alone, like alone putting down the book, alone, um, the sort of going internal as you're absorbing this.
AS: What was it like in your marriage as you were realizing how this illness was going to change your life?
ME: Um, you know, in a lot of ways, it's brought us closer because we've sort of had to endure this awful thing together. But it's still awful. And it's obviously different for Ally because she's still healthy and able-bodied, but it's been horrible for her. She lost her partner. And... now, she has to take care of somebody. And I can't always be there for her. Um, obviously, not physically, but more so emotionally. Like if I'm too crashed out and can't really talk, you know, it's only a very small, little, tiny piece of her former partner that she has now.
AS: Uh, a different partner.
AS: When you say she takes care of you, what does she help you do?
ME: Um, you know, she, she cooks dinner. She drives me to— [clears throat] I'm just going to have a sip of my tea.
AS: Sure, sure. [pause]
AS: Hi. What kind of tea do you drink?
ME: Oh, tea is like one of my big things. [laughter] I don't drink the same tea twice in a week, it's always something different. Ginger, peppermint, puerh, turmeric. Um, yeah, you know, I'm able-bodied enough that I can get up and go to the bathroom and even put something in the microwave and that sort of thing. Helping around the house, doing the laundry, you know, she has to do all of that. I'm probably forgetting a million things that just go completely over my head at this point. And meanwhile, she's in grad school getting her PhD, so it's not like she already doesn't have a lot on her plate.
AS: Do you find, like have you... is there a certain time of day when you all spend time together or does it vary? Like, does she come in and lay down beside you when you talk... or how do you stay connected these days?
ME: Lately, we've been—Every night at dinner, we sit at our table and we watch an episode of Jeopardy. [laughter] And it's been, like, the most fun that I've had in years. [chuckles] And it turns out we're actually both pretty good. We both know a bunch of random, worthless information, and that makes it really fun. Sometimes we'll go on like a little evening drive around the neighborhood. Um, she'll just drive me around when it's dark and my eyes can relax, and we'll just drive around for 15 minutes and look at the trees and the houses and the lights. Trees get me really excited these days, I'm all about trees. And Nevada's, Nevada's biggest tree is this giant sequoia that's just down the street from us in this person's yard. So we go down to this massive tree and we get out of the car and go up, feel the bark, and look at its massive limbs. And yeah, that's something. [chuckles] It's not, it's not climbing El Cap, or, uh, you know, Ally and I flying our paragliders side by side way up in the mountains, but it's, it's something.
AS: Well, I'm going to let you get back to your day. Um, what are you going to do next?
ME: In life?
AS: No, like today. Like, after we hang up, what will happen?
ME: Oh! I, um, [chuckles] I have a urology appointment. I'm going to go get catheter-ed.
AS: Oh! [laughter]
ME: Is that too, is that TMI for this podcast?
AS: No, I like it. Does that happen often? How often do you get a catheter?
ME: No, this is, this is not part of my usual, um, uh, programming. [laughter] Yeah, having some lower body issues that may or may not be associated with my illness or I'm not really sure and trying to figure that out. I mean, a lot of my time is spent on research and medical investigation is where a lot of my cognitive capacity goes towards because I can't keep living like this. I can't do it. My wife can't do it. It's awful for her. You know, both our lives have been shut down. And so we're doing everything we can to try to figure it out against the odds.
AS: Well I hope today's appointment is, uh, it feels like it's a useful one for you.
ME: Thank you. Yeah, it's certainly not going to be fun. [laughter]
I called up Mason the next day. I asked him how his doctor's appointment went.
ME: The, yeah, the doc recognizes. He's like, "Yes, you're having problems." Like that's, "Yes, I know. Thanks for confirming that." [chuckles]
AS: Let's pick up where we left off yesterday if that sounds good to you?
AS: And we'll just do the same thing. Just kind of go until you start to notice that you're ready to finish. You're ready to be done and don't feel like you have to push beyond what's comfortable.
ME: Yeah, no worries.
AS: Are you in the same place where I talked to you yesterday?
ME: I sure am. [chuckles] Yeah, it's funny. I was literally just thinking. I've been on podcasts before for climbing and whatnot. I never thought I'd be taping a podcast while laying in bed. [chuckles]
AS: I know. It's very intimate, right?
ME: I guess that's just how life goes.
AS: Um, I wanna, before we move on from, um, your time being an elite rock climber, which we talked about some of you sort of, the way you look back on it with, seeing it differently than it felt at the time about the risks you were taking. Um... before you got sick, did you think of yourself as someone who was a risk taker, who enjoyed pushing the limits and, and the thrill of danger?
ME: Absolutely, yeah. Uh, a lot of climbers really dislike being labeled as adrenaline junkies, but I, I for sure was an adrenaline junkie. Um, you know, I loved doing big rope swings, you know, jumping off of cliffs. Um, I flew paragliders and speed wings soaring down a mountainside at 40, 50 miles an hour.
AS: And did you push out the possibility of death when you were doing that? Or were you at peace with it when you think of your mindset back then?
ME: I, uh, back then, I would have told myself, "Oh, I'm at peace with it," but I was just completely oblivious to it. Because... when life is just sort of going your way at every single turn, when there's no big bumps in the road, you start to think, "Oh, gosh, you know, this, this is pretty great. I'm in control here. I'm, I'm in charge of what happens." And, uh, that's just not the case. You know, and I do have this complicated relationship with climbing at this point. Several of my very best friends have died climbing in recent years. And so, it, it isn't what it used to be for me. It's not as, it's not this innocent, kind of fun thing that we're all doing. You know, when I was 20, I would have thought like, you know, "Oh, yes, climbing is worth dying for." But after... after losing my friends and being with their families and seeing how hard it is, I'm like, "Oh, my gosh. That is, that was not worth it. There's so much, so much more to life." And it's a bigger wager than I thought to go out climbing. And not coming home at the end of the day is not acceptable.
I don't know. I think I'm a little cynical too from sitting on the sidelines as well, but [chuckles] yeah.
AS: When you say "several," when you think of your very close friends who you've lost, how many?
ME: Um, uh, one, two, three, four, five. Five close friends.
AS: Mmm. I'm really sorry.
ME: Um, yeah. It's, uh, these things have risk, it turns out. I'm really sounding like a curmudgeon, aren't I? [laughs]
AS: No, I think you're sounding like someone who's gone through something very intense that has changed your perspective and also on what is precious and what is worthy of protection.
ME: I will say that I think maybe the biggest lesson that being sick has given me is that it's just how precious life is. Life is so, so precious. I feel like I have that perspective because I've really lost most of what life was for me. You don't have to go from being a professional rock climber to this level of function to, to have lost everything. Even someone who... wasn't athletic at all, and, you know, maybe just had a normal job and, and did everyday things, going from that to what life can be like with ME/CFS is, is just as massive a loss. 'Cause, you know, I can't go for a walk around the neighborhood with my wife. I can't hang out with friends more than, you know, maybe one night in a month. You know, I don't want to sound like, "Oh, gosh. I was, I was a hotshot climber and I can't do that anymore." So for me, it's really bad. And you know, that's not the way it is at all.
AS: I know you don't sound like that. And also, I just want to give you permission to be as curmudgeonly as you feel like it, as you feel like. [laughs]
ME: Yeah, I sort of err on the curmudgeonly side these days.
Coming up, one more phone call... with Mason, from bed.
ME: I've definitely accepted the fact, long time ago that I am now a disabled person. I have a disability. I am not able, able-bodied. But at the same time, it's, um, it's not acceptable. It's okay that I'm not okay, [chuckles] but we're going to keep working to, to make me okay again.
Last week’s episode brought up a lot of things... for a lot of you. It was about deciding to become a parent or not, especially as it relates to creativity and ambition—and featured conversations with artist Julie Mehretu, writer Maria Housden and comedian Margaret Cho.
JUDY-B: The idea of FOMO for motherhood just fucking pisses me off, and I’m not gonna listen to the rest of this show.
This listener named Judy-B sent in two voice memos, responding to the first part of the episode, which is a conversation between me and the host of The Cut podcast, Avery Trufelman. Avery is not sure if she wants to have kids, and worries that she’ll have to give up too much of herself in order to have them. Judy-B is 54, and definitely did want to have kids—but it never happened, for a number of different reasons.
JUDY-B: Underneath the anger at hearing your conversation is grief... that I felt coming up as I heard you talk. I, I felt sad, for myself.
We also heard from listeners who wished we’d framed the episode differently, like Dr. Jessica Moorman, a media scholar, who wrote on Twitter:
"This week's episode of @deathsexmoney is another data point [in] the post-Census discourse of anxiety about Whiteness, class, and fertility. Can we talk to literally anyone other than White or wealthy women about their decision making regarding childbearing and fertility?"
And, we heard from people who did have kids, who appreciated hearing about ambivalence, even after you make the decision to become a parent. Like a listener named Rachel, who didn’t really like her first several years of being a mother.
She wrote us, “Now that my child is almost 8, I can honestly say I am loving parenthood for the first time." She continued, “But people should know that if they decide to have a kid, they may hate their life for 7 years. That’s what happened to me.”
Thanks to all of you who sent in your reactions. As always, we want to hear what you think about episodes, and what you want to hear next, our email is firstname.lastname@example.org.
On the next episode, I talk with graphic novelist Alison Bechdel, who told me about going through menopause, and how that made her feel about not ever having kids.
ALISON BECHDEL: I think what I was feeling was... I'm really the end of this line. There's, no one coming after like that, like there's something really profound about that genealogical cul-de-sac, you know? That's what was hitting me.
This is Death, Sex & Money from WNYC. I'm Anna Sale.
During my second conversation with Mason Earle, he told me that these days, his community is largely online. Mason can tolerate short spurts of screen time during the day. Through social media, he's been able to connect with other people living with chronic illnesses. He told me his friendships from his life before he got sick, especially with other climbers, have changed.
MASON EARLE: I get together with friends now, my climbing friends, and I love them and I love being with them. My life is just so, so different than theirs right now that I can't, I can't, I can;t get into and interested in all the old things that I used to talk about. I can't to a certain degree, but my illness in my life right now... it's all I want to talk about because it dictates every moment of my life. With chronic illness friends, you know, they've all had some similar type of experience and, and that can be the foundation of, of our friendship. And I have, I have friends that have had ME since they were, you know, nine years old and they're in their 40s now. I have friends that, that were so severe that they literally didn't use their legs for three years. Stories that, that make me feel like I've been on the, on the light-duty pleasure cruise version of ME/CFS. Uh, yeah, all sorts of different experiences.
ANNA SALE: When you think about how you got through that period of that first—the heaviness and the darkness of facing how your life was changed, um, do you remember what helped, helped you sort of move through the intensity of that realization?
ME: It wasn't a graceful few weeks. I mean, I was kicking and screaming and literally crying, with, using any extra energy I had. Um, yeah, I guess probably crying was my, my, uh, best survival mechanism, and still is.
AS: Yeah, yeah. Is it hard to cry? Does it exhaust you?
ME: Uh, yes. It is exhausting, but it is therapeutic. It's the, the release valve when you just can't take anymore.
AS: This is also a hard question. If you don't want to answer it, that's okay. Have you had thoughts of suicide?
ME: Yes, I have, yes. I've been sick for a year. It was spring of 2019 and I was sort of getting a little better and I was thinking, "Oh, maybe I'm getting better," and then all the sudden in April of 2019, things got much worse. All of a sudden, I was more severe than I had been yet. It came down on me so hard and this realization that this really is, that this really might be my life now. I remember just a few days that I wasn't, I didn't know if I could take it for another second. It just didn't seem possible that things were going to get better. And when you have no hope... just, just existing is, is, is agony. I don't know how close I was to actually taking any action, but that was, you know, by far, the closest I've ever been to not wanting to live anymore, which before I was sick, healthy Mason never could have guessed that, that things would be like this. Healthy Mason who always had everything go his way and... had an, had an even keel.
AS: Do you talk about healthy Mason a lot? Is that a term you use?
ME: Yeah, My life is so clearly divided in these two chapters, healthy Mason and sick Mason.
AS: Have you um, has mental health care been a part of your health care? Have you had professional help?
ME: Oh yeah, oh yeah, yeah. I still see a therapist almost every week.
AS: You know, Mason, I don't have a sense about your health insurance and your medical bills. How are you taking care of your medical life?
ME: Um, well, thankfully, I'm married to someone that works at a university. [chuckles] So, yeah, I definitely had, I've had a safety net there the whole time. Um, but I mean to be honest, most of this journey, you know there hasn't really been much that you know, the Western medicine hasn't had a whole lot to offer. Actually, you know, so the healers and those types of people that I've been seeing, which, you know, um, provide a lot of comfort, um, at points, you know, none of that is covered by insurance. So it's, uh, whatever savings I had have been pretty much obliterated by this whole experience.
AS: It's helpful, and not covered by your health insurance.
ME: Yeah, that's just how it goes. Like, well, you'll prescribe me Xanax, but I can't, you know, go see acupuncture lady who makes me feel all warm and fuzzy. [chuckles]
AS: Mason, thanks for talking to me again.
ME: Yeah, absolutely. Gosh, I used to love talking so much. Now, it's, it's, uh, a special treat.
AS: Aw. Like a free solo.
Mason and I talked one more time about a month later, and he told me that he'd been feeling a bit better. He had a spinal surgery last year that, for him, seems to be helping with some of his symptoms.
Mason told me he’d even recently felt well enough to travel with Ally. Ally is also a rock climber, so they drove out to the desert, and Mason was able to watch her climb for the first time since 2018.
ME: I was definitely sort of very, um, very much like a house cat first time leaving the house, very unsure of the world and scared of everything. [laughter]
AS: Wow! I can picture a house cat in a desert being like totally freaked out. [laughs]
ME: Like, whoa! What? This isn't the living room.
AS: [laughs] And, did you feel, um, jealous watching your wife climb?
ME: Uh, no. No, I don't... I think to miss climbing, I would have to be health—to really miss climbing, I would have to be a lot healthier. 'Cause right now, it's nice to go out and I can sit and be outside for a few hours, um, but what I miss is feeling good. I mean, when I, like, think of my healthy daydreams like what healthy life looks like, it's like me, and my wife, and our house, and a little vegetable garden that I'm tending to, um... drinking a bubbly water on the back porch with some friends. I mean, that's... I think back on healthy life and, actually, those things were the best things I ever got to do. [chuckles] You know, it wasn't, um, some godforsaken cliff in some godforsaken part of the world. Um... yeah, it was these smaller moments, you know, pruning a plum tree in my backyard. Um, that's as good as it gets, let me tell you. [chuckles] Uh, yeah. Maybe having a kid or something, I don't know. That's certainly off the table at the moment.
AS: [laughs] Pruning a plum tree, maybe having a kid.
ME: Yeah. I hear it's, you know—that's sort of—thinking about that, it makes me feel sad that any sort of dream of starting a family is completely out of reach at the moment. Maybe we've already talked about this. I forget, but—
AS: No, you can tell me more about that. Does it feel it's on, like it's an idea that you've just had to put on pause?
ME: Yeah, it's definitely just on pause. Definitely, it makes me sad to think that, um, that at least at the time being that isn't, um, in the cards.
Anna: Something we haven't talked about and it might be too private, you just tell me, but um, what have you noticed about when and whether it feels good to be touched by someone else?
Mason: Um... um, you know, at the moment, it's quite... it feels good and it's nice. And, you know, hugging my wife is something that I'll do at least once a day. Um, but I think back to when I was my most severe, um, touch is, actually, it's, it's, uh, a lot of times can be too much sensory input, um, and can result in overstimulation pretty quickly. And that's a really... it's just, I mean, that's horrific. But, uh, yeah, right now, my sensory sensitivities are much better.
AS: When it was so... during that horrific period as you describe it, did you still... did you long for touch and also feel revolted by it both?
ME: Um, yeah, I wouldn't use the word "revolted by it." It's more like, um... you know, I'll be laying there, and, you know, my wife would put her arm on my shoulder and just her putting her hand on my shoulder would send me into a brief period of shock, almost Like, "Whoa, whoa." Um, it's just insane.
AS: Um, for you, did it feel important to figure out how to continue to have uh, to have sexual intimacy? Was that something that was a priority even if it was changed to, to, to not have it go away completely?
ME: Yeah, it's something that I've been willing to, um, to sacrifice my, um, you know small amounts of health for. It's, it's worth it to maintain, you know, that deeper connection, but, um, not everybody with ME/CFS is as lucky as I am. You know there's people that are so severe that that's just completely off the table.
AS: Do you look at your body in a full-length mirror?
ME: Yeah, it's, uh, yeah, I look like a ghost. Um, it is sort of interesting... to look at myself in the mirror and, um, just kind of be in awe of, um, how different my life is and everything I've lost and everything I've learned. And, I think of this, these years of illness of being a transformative experience, sort of like a rebirth, like a shamanic death, um, kin in that vein. 99% of the time, it's been really horrific and awful and feels like a prison. There's been a lot of suffering, but, you know, through all that, I see life through fresh eyes, I guess. I'm finding I have an enormous capacity to enjoy life. [chuckles] I don't need much at this point, yeah
AS: Oh, I love that! You're discovering your capacity for joy. That's really cool. Can you give me an example of something you noticed of like, "Wow, this feels amazing?"
ME: Uh, we were out in the desert a few weeks ago, and I got out of the car and, you know, kind of legs barely working, but, um, just pacing around the parking lot a little bit. And there was, uh, this little black beetle on the ground and I was just like, “Wow, look at that. It's a beetle.” And I put my hand down and it crawled up on my hand and I just let it do sort of like a, the beetle treadmill around my hand for a while. These are all things that I didn't really notice so much, um, in life. Like, being out in the desert, the only thing I would notice are, "Oh, where are the rocks? Where are the good rocks? I want to find some rocks." [chuckles] And now, I'm looking at everything else.
AS: I mean, hearing you describe this, like, uh, sense of wonder, it reminds me of walking back from the playground with my two-year-old. [laughs]
ME: Yes, yes!
AS: She can't walk three feet without stopping and staring close-up at something. And I just like, "Come on. Let's go home. I got to make dinner," but she's like, "Look at the ants! Look at this blossom!" You know, it's just... [chuckles]
ME: You know, not to brag, but I'm on that level right now. [laughter]
That was Mason Earle. Since our last conversation in March, he told us that things have been pretty much quote “status quo.” He recently posted on Instagram about another outing with Ally—they went out to gather some plants for making tea.
Death, Sex & Money is a listener supported production of WNYC Studios in New York. This episode was produced by Afi Yellow-Duke. The rest of our team includes Katie Bishop, Emily Botein, Yasmeen Khan, and Andrew Dunn.
Special thanks to Sara Luterman, and to Mardy Harding, one of our incoming summer interns, who pitched this episode and introduced us to Mason.
The Reverend John Delore and Steve Lewis wrote our theme music, and there’s some original music by Cam Thompkins in this episode.
I'm on Instagram @annasalepics, that's P-I-C-S, and the show is @deathsexmoney on Instagram, Twitter, and Facebook.
Thank you to Lenet Rivas in Decatur, Georgia who is a sustaining member of Death, Sex & Money. Join Lenet and support what we do here by going to deathsexmoney.org/donate.
AS: I like thinking about you and my daughter, Eve, looking at bugs together. [laughs]
ME: Yes, we've got some good bugs in our yard.
AS: Cool! Well, uh, thank you, Mason. I really appreciate it. Um, you have quite a way with words. Yeah.
AS: They're going to stay with me.
ME: This has been a real—it's been really nice to kind of get to let all this out.
I'm Anna Sale and this is Death, Sex & Money from WNYC.
New York Public Radio transcripts are created on a rush deadline, often by contractors. This text may not be in its final form and may be updated or revised in the future. Accuracy and availability may vary. The authoritative record of New York Public Radio’s programming is the audio record.