Episode 57: Solitude + Connection

Guest: Andy McLellan

Lauren: Thank you for joining me today. I'm really glad that you're here.

Andy: Thank you for having me on. I'm really excited to be here. I feel like I've been telling friends who listen to podcasts I'm being interviewed. I feel like some kind of minor celebrity.

Lauren: You are. It's official as of today.

Andy: Well there you go.

Lauren: Well, you know, I'd love to hear a little of your health summary and what you’d want me and the listeners to know.

Andy: It's kind of in several stages, but it started nearly 25 years ago. I was from an early age, I went on an academic route in Britain we do A levels at 18. And then I went to university, did my bachelor's degree and then straight on to do a PhD. And after that I got a, a research job in Switzerland as a researcher biologist. And um, during my PhD I started to get that symptoms of stress. It's not surprising PHDs, you know, academia is, it's fun, but it's a hard environment and I had lots of symptoms of gastric reflux panic attacks and things like that. But I graduated and I seemed okay. I moved to Switzerland. And then at the end of that year, I was coming back home for Christmas to visit my girlfriend who lived in the UK and I came down with glandular fever, which I didn't know at the time. I just never recovered. I went back to Switzerland, started working again, but then just completely collapsed and could hardly walk. Often I tell this that in November, 1994 or 1995, my research group from the University of Missouri was doing a walk in the Alps, I was kind of 3000 meters up in the Alps. And by January it was a struggle to walk to the bathroom. So I had to, I had to be flown home and I didn't actually know what was going on and I was staging. It's really scary. So though I love living in a foreign country, and I spoke some German and some French being ill in a foreign country as a quite another thing when you're feeling fully fitted. But then I had to be flown home to live with my parents. I'd left home like 18 and I was 25 living with my parents which wasn’t ideal but they were lovely and supportive. Then over the next, so 20 years I got a diagnosis I learned about the illness, I learned about how to manage your body, what symptoms mean you have overdone it, what signs to look for and how to organize your life in a way that you aren’t just push, push, pushing. And that was all fine, I managed to get well enough to get married, have kids. I did a pathfoot degree in herbal medicine, I would love to finish it. But 5 years ago I had another major crash. Since then, the illness took on a new form and I’ve basically been confined to the house, almost confined to the bed and it’s been deteriorating the whole time. And that’s been a whole new challenge and I guess that’s where we are now.

Lauren: And you have a condition that my understanding is hard to find diagnosis for, is that right?

Andy: Yeah, it's a weird one. I remember with your condition, multiple sclerosis, uh, I think this is true though, in the early days it used to be called hysterical paralysis because they didn't know what it was caused by. So as the way of science, I love science. I'm a scientist but there is a thing in the medical profession that if they can’t find the cause they kind of put the blame on the patient rather than just saying...I remember, I think it was Lilly you had an interview with who was saying, I just wish doctors would say they don’t know.

Lauren: Yeah.

Andy: And if they said for those MS patients in the fifties, or 60s, whatever...well we don’t know. You’re obviously sick, but we don't know. That would be a much better than yeah. And it's the same with my ileitis or chronic fatigue syndrome as it's often called, has the same problem now. When we don't know what is causing it. And it may be that it's a blanket diagnosis for a whole load of different causes that have a similar symptom set. I mean, the main one is PEM which is post exertional malaise, which is basically the time you take to recover after you done exercise or activity and in ME it’s not like a normal person who can go to the gym and feel sore the next day but then they’ll be fine. With ME a person can feel exhausted after taking a shower or just walking up or down downstairs. And then if they really overdo it, it can set off a whole relapse and take a long time to recover. But yeah, they don't know what, why that is.

Lauren: Yeah. And not having those answers and wondering what that's been like for you because you've been living with it for so long.

Andy: At the time when I felt in control, having the answers were less important. Now getting the answers is far more important because I'm carrying on to get worse. As I’m doing research, as I've got my PhD in biology, I'm able to go through the medical literature and I find I come up against the kind of event horizon of research where I'm at the most recent, most advanced, most up to date research. And then it stops and I’m you’re just waiting for the person to make the next move. So there's some theories that it's to do with mitochondria, which makes a lot of sense because they are the energy producing organs in the cells, makes a lot of sense.. And then there’s studies that point to other things. The one hope we've got at the minute is there's a guy called Professor Ron Davis, who's at Stanford university, and he's an eminent biologist in his sixties who's coming to the end of his career, but then his son got severly ill with ME. As a result, he kind of cleared his desk of all his other research. And is now concentrating on setting up an international research team to look at this. He started from first principles. He just got blood from the most severely affected people with this disease. And he’s just run every single test on it to see what commonalities there were. We have great hope for him. But it takes time. Even when you find causes it can take time to find a therapy or a drug and then get that drug tests and licensed. I guess we’re hopeful but we aren’t stupidly optimistic. We think a cure is just around the corner.

Lauren: Yeah. Well I want to tell you that I don't think I told you this before the interview that there have been several people writing to me asking me to please invite someone on the show who has ME, so you are officially the first guest.

Andy: I’m an ME correspondent. Well, I actually try my best. You see, the thing is everyone has a different point of view who has the illness. You know I’m presenting my understanding and my point of view. I don’t claim to represent everyone with ME. Hopefully I can put some of our point of view across and the frustration there is. In a lot of chronic illness communities there is a lot of frustration. The current medical model is fantastic with acute situations. If you have a heart attack, a broken leg, or bacterial infection, it’s fantastic. You go in and you get cured and sent out. Chronic conditions, I get it. If i was a physician and had someone coming in, most tests come back negative but the person is still sick you try different treatments and nothing works you think...well I have a whole room of cancer patients and heart disease and I know what to do. I’ll go fix them. I get it. It’s expensive treating chronic illness. I think MS is treated well in some ways but I’m sure there’s still frustration with what you get and don’t get.

Lauren: Yeah, for sure. And that mystery. It feels sometimes for me, like a magnified version of the mystery of being human and how much about the universe we just don't understand.

Andy: Right, right.

Lauren: But then at the same time feels like it's so concentrated for certain individuals to live with that mystery.

Andy: I think that's it. And I, I must admit, when I was young and I was an academic, I was arrogant. When I came across people with illness, I think if I was ever that position, I'd work it out and I’d fix it. And uh, let me just say the practical exam is much harder than the theory.

Lauren: Yeah.

Andy: And it does. But that's why I think the people who are really, it breeds compassion because, and not just with people with other chronic illnesses, but anyone who's going through a hard time in life, you can say to them I get it, it's really tough. And there are times when you will not understand what you're up and you don't have the answers and you've just gotta sit with that and do your best and sometimes we will mess up. With ME, it’s a balancing act between if you do too little, we know what happens to a body that just is sedentary all the time. The research is there. The doctors tell us to do cardio exercise to build that up and if you don’t do that then your body atrophies. If you push too hard you push yourself over and set yourself back. The difficult thing is you try and walk that line but lifes not like that. You don’t get life coming to you in bite sized chunks everyday. Some Days you have nothing on and it’s fine you can structure as much as you want. Other days, things will happen. I have kids. When my kids were young and I could still drive, my daughter was at the nursery. She popped her elbow out. It dislocated. I didn’t know at the time, she was 2 or 3. The doctor said this can happen when the tendons are still forming but she was absolutely distraught. I had to do what any parent would, pick her up and take her to the hospital. But when you've got a chronic illness you aren't just thinking as a parent to drop everything and get your daughter. I’m thinking, have I got the energy for this. But at that point it doesn't really matter because you'll do it and take the consequences. Nobody blames you for that. The other thing is if you have a family event or something nice you want to do you just think hell I’m just gonna do it anyway and suffer the payback and sometimes the payback is worse than you expect and people are not so empathetic. I’ve got a school friend who moved to Brisbin ten years ago and he just got married this year and he was bringing his new wife to visit all of his old friends in the UK this autumn and I knew if I didn't see him I wouldn’t see him for another decader sdo it was setting aside...I can do...not go ridiculously mad but still thinking it's worth the price of meeting him and seeing his wife and just spending a day with them to what's going to happen afterwards. Other people can be quite judgey.

Lauren: Yeah, and I hear you say, the older you before you got sick. Oh I would handle it if I got sick. Fast forward now. And you're saying, wow, there's a lot of time and energy it goes into just managing, how do I expand, how do I make those decisions and also do it in the context of the judgement of others.

Andy: Yeah. Well, I think you must have found this, well now everyone who's been a part of this podcast and listens to it. Yeah. It can be a full time job managing an illness, going to medical appointments, reading up on the latest, there isn't treatments and then yeah, managing, scheduling things in so you haven't got things too close together. So you say, okay, I'm going out that night or working those days said, then I've got an idea and some rest days or some rest times or whatever on it. It is. But I think, okay, parts of I'm not too hard on myself. I think part of that was the arrogance of you thinking, put your mind to it and you could do everything and wait.

Lauren: Yeah.

Andy: I found parenting was much easier before I had kids as well. Another thing that's taught me.

Lauren: Well I think it makes a lot of sense to never...I really have heard this from so many of our community members that we never really get it until we're living it. And so there's this tremendous, like when I think about the decision you had to make that day, you're going to see your friend, you probably wouldn’t be able to see for another decade and there are things you had to give up in order to see him.

Andy: That wasn't too tough to be honest, because it was like saying the stakes are high, I won't go, wasn't going to save them for another decade. There's other things where people ask you to do things. You have to say no, and you don't know them so well. I'm sure you've had this as well. And again, say members of this community, somebody says, can you come and do this? And yeah, say, no, I really can't. And they're like, Oh, you did the other time, we'll, if you've really liked me, you would all really love me. And that’s hard. But one thing illness has taught me, sadly, is the importance of saying no, that's hard. And I don't like doing it by nature. I like to agree to things and do things for people and with people. Ah, yeah you have to learn. If you overdo it, you're no use to anyone. So yeah, being a parent it's even more so, and that does actually give me a kind of out, I can say to people even now, if they want to ring me up, talk about problems they're going through, with their illness I say look, I’d really like to, but it, I've got to be sure I got enough energy to spend time with my kids, so that's my priority.

Lauren: I think that it can be socially, of course, there are so many reasons that conflict can show up in these moments. But I think sometimes I wonder if folks are seeing a reflection back to themselves of their own care practices in the sense that we don't really have a choice with illness. It's not like we can just, if we just push hard enough, it'll all work out. Right, right. And I think that that in many ways is true. Whether we have illness or not. If we push ourselves too hard, that's a problem. But we cannot get away with pushing ourselves too hard when we've got illness. And so I think sometimes, and I think about the culture of today, at least in the US, I don't know if it's this way in the UK as well, but there's the sense of just to work so hard and get so much done and be accomplished and go out and be social and do all these things. And I think everyone is longing to some extent, got more balance.

Andy: I think that's really true.

Lauren: You know, it's like when I say no I can't go because I've got energy management stuff. I wonder if it might be speaking to some part of that person who isn't yet giving themselves what they long for and maybe rejecting that concept of extreme self-care is maybe it's seen.

Andy: Definitely. And I think self care, I believe it's become a really popular term and it's got a bad wrap. It can be really selfish and consumerist. I think it is important because, well, I'm nearly 50 now and I think when you go through your 20s you are able to just go out, meet almost all your commitments and you’re fine. I think most people find as they become 30 or older and if you're working full time and you'll try and have social life as well once you've got kids or not there are times you really want to do things and you just want to be able to say, that sounds great but I just want to stay with a book and some tea tonight. it is in this culture, there is such a, I think it is the same as the UK, but not to the same extent as in the U S okay. People have to be seen to succeed professionally, socially. And everything. And that actually talks to another part of chronic illness is when I, when I got sick, I was 25 I’d reach basically where I wanted to be. I was a research scientist, a really good European university, had my PhD and everything, and chronic illness. And I've heard other people you've interviewed talk about how they've got to where they in their life and suddenly, all right, and then the illness comes and you see all of that fall away and you've got a whole identity wrapped up with the work you do or achievements you have social life you have to have friends and I think most people we'll have a familiar thing of a lot of friends falling away. Some people and it's weird. It's not always the ones you expect to disappear. And that some people can handle it and some people can’t and it's really hard at the time, but you kind of get used to it and then you meet other people. You seem to have met some really lovely people who have illnesses who just then it's just so much easier to be with them because you don't have to worry about that judgment because they know when you say, I can't come out tonight because my symptoms have flared, whatever. They know it's coming from a real place. I think one of the things people when they ask you out on a social, when you say no, maybe sometimes they think you're using your illness as an excuse to avoid something you don't want to do. Where as a person with an illness knows what you’re saying. I think when you first get diagnosed it's the toughest period. So you have to make so many adjustments. You have to change from that life that you have and love. To a new life. I've been listening to your interview with others, we know where the end opens up for it. A rich treasure box of new excitement as well as the the horrible stuff because at the time it just looks like everythings being lost.

Lauren: It really does. And as you were saying that, I took a deep breath because I was kind of thinking about all the people who, for example, just today I received the news, I have a new diagnosis and it just was bringing into my heart awareness that I can relate in my own way. And also of what you're saying, which is there's so much more than just, but we imagine when we first get diagnosed, there are treasures, but in that time it can be completely life changing psychologically, how we think about who we are. There's so much that goes on and I just something about how you just talked about it really connected me to it.

Andy: That's incredible. And when I listened to your interview again and you went into that doctor's office and they say, we found lesions. It's just suddenly one sentence and your kind of bucket of your life is kicked over and it's just going everywhere and it must be the same with people who get cancer diagnosis and stuff. This is just, it is, I mean this is a, that's why I loved your, your podcast and others like this. So when people do get that diagnosis they can go online and find, there's people who've had this, so they're still living and they're still enjoying life. But it's so nice to see. One of the best things I've found about the illness is patient communities and I've learned more about the illness and dealing with illness from other patients that I have from any medical being. And that's not a slight on the medical people who do it. Other people who are experiencing this firsthand, they’re just amazing. I've just met some amazing people who I'd never otherwise. Well, I'm so grateful for that. So I would say to anyone listening to this, who's recently been diagnosed with a chronic illness. They'll be OK, It might not be okay in the way you think it's going to be. Things are going to change, but some great things will come in. I remember you saying as well about a letter somebody wrote to you who you hardly knew, and they just said to you they are standing up at the base of this mountain and there's just amazing things there…

Lauren: It’s a tough climb but that the views will take your breath away.

Andy: When you've read that out I just thought that must be such a gorgeous thing to receive.

Lauren: It felt like a life raft had been thrown to me. There was something about the way she spoke wouldn't necessarily resonate with everyone on a given day, but for me on that day, it resonated with a part of me that truly desired to see things through that lens.

Andy: That's really nice.

Lauren: There was someone outside of me doing it and living it and giving me permission to look at it that way. It was Incredible.

Andy: It's amazing. So this is another thing. I'm just going to keep praising your podcast all the time. That's another thing I love, your podcast is...it's almost like it's those of us who are up the mountain are just saying...so the people at the foot...hey, we've done this climb. It's tough. It's okay. You know we can throw you a rope down in terms of just some information or just some reassurance that it is going to be okay. We can just tell you what it looks like from up here. All the scary bits and the lovely, but yeah.

Lauren: Wow. If I had to name my podcast again, I think now after hearing you say that, I'd probably name it something to do with a mountain helping each other up the mountain.

Andy: Well, if you write a book then maybe.

Lauren: Yeah, maybe. It's hard to imagine writing a book without feeling like I have a hundred or more coauthors having learned so much from these conversations.

Andy: Well maybe you could do that. I don’t think it’s a terrible idea and I've been so impressed by all the people you've had on here. They've all so many little bits of wisdom that it's just utterly beautiful. So thank you to everyone who's been on here. They're all fabulous human beings.

Lauren: And I know you, because you've joined the podcast cafe, which is that Facebook group where we chat about episodes or chat about updates in our lives. I would call it co inspired by some of the ways that you are contributing and just felt gratitude for your offerings and how you think about living with a body and living with a specific body that you have. And just before we chatted today, you were mentioning that you feel like you're living with a pretty extreme set, uh, symptoms. I'm trying to remember the language you used.

Andy: I don’t know what I said now. I think, I guess, yeah, not the hard end of, I think there's different phases of chronic illness and different manifestations and it's not a competition. It's not any easier than the other, but there's a difference between when you have a chronic illness and you're trying to live life basically normally you're working at job or parenting normally. And then there's the severe end where you are housebound or bed bound. And it definitely takes more of a feeling of survival and just day to day day management. And it's no longer about structuring your days so that you can live normally on certain days and then have rest days, which is still hard. Instead you're just waking up pretty rough most days. And I am basically confined to that. I get to the bathroom once a day. That is pretty much why it's confined to a room, although I'm fortunate, I live in a ground floor flat and the rural location. And by my bed I actually have a door to the outside and I can open that door. I put peanuts out. I have a squirrel that comes and visits and it's a cheeky squirrel cause if I don't put the peanuts out but the door's open, she'll come in and just start opening the bag of nuts. But it's nice. It's like a connection to the outside world. So. And over the weekend I was part of an online Buddhist retreat. We were talking about a poem from an eighth century Chinese monk. It's the song of the grass roof Hermitage and it was this monk who basically built himself a hut with a grass roof and he was just living in that and talking about his life and how he was just in this hut. His whole life was there and his experience, although it was over a millennium ago in ancient China. I feel like I'm a hermit in my hut. Admittedly I have like a laptop and Netflix. But it's still, all I'm saying is I don't think the amount you can do is necessarily related to the amount of life that you live. You can live a life totally fully from bed. When I was first still, there was no internet. Well there was basic internet. You could email. But there was no world wide web. And it's still fine. I still live. I'm still fine to communicate with people. We used to send out lists of phone numbers or addresses to call each other and send little cards and care packages and stuff. But now, it’s amazing. Lauren’s community and on Facebook and whatever illness you get, you can easily Google it and there's probably an organization that's a support organization that will give you more information and specialists, doctors. Not only that, you can learn the language from your bed. You can watch whatever films you love. If you'd like crafting or art, you can watch stuff on YouTube. My life has been connection and the internet has made that so much easier. And life is so much better when it’s shared with others. Especially when you are sick. You can’t do this alone. It’s not feasible. There is, in our society, such a thing of being independent and kind of self-reliant and it's just known. Even if you're not sick, it's just nonsense. It really is.

Lauren: I think you're right about that. And with all of what you just shared. I mean I've got tears in my eyes. I feel like you just took me on a journey with your sharing cause it was just straight from your heart. I could feel it. Yes. Bitter sweetness. How we are relational beings, right? How there's this sense of almost like a connection to the lineage of folks who lived in the huts and you can relate to that. You know that we're supposed to be in connection. So how, and this is more of a question that I don't think any one of us should have one answer to necessarily, but to kind of think together about like how do we balance that solitude, aloneness when physical challenges keep us from being out in the world more physically. And balance that with being in connection and community and receiving and giving.

Andy: I think it's hard and I think it's something that everyone has to face, whether they're sick or not because we find some people, there's a lot of talk on the internet in major now about introverts, how a lot of life, especially modern life is set up for people who are extroverted. The sellers, the doers. People who can go grab life by the neck and take it on. More people are writing now about the importance of silence and having time to yourself. And being sick and being housebound is one extreme end where you may experience too much solitude and silence, but for someone else who's say single mom working two jobs and then going home and having to look after kids for her, she's completely out of balance the other way and just thinking, Oh my God, somebody take my kids away before I strangle them and it's not because there's anything wrong with her kids, but she's basically been active all day at work and they believe in what I have. And then it just got groups saying, mom, mom, I want this, I want that, this tea tastes disgusting, whatever. So yeah, I think for all of us it's finding that balance and I feel quite fortunate is I'm, when I was at my first university, it was near the new forest and um, the South of England and about after a week university, I'd just take myself off to the forest for a day just to wander around. So I've always realized that although, I love talking to people, I love talking to people and talking to you now, and I'm obviously...I'm talking a hell of a lot. I loved talking to people. But I need my downtime away from people.

Lauren: Absolutely.

Andy: I am actually quite happy taking a lot of time on my own. Whereas I've got some illness friends who before they got sick, they love going out. They love actually doing things and socializing. I think for them it's much, much harder. So I think it is a, it's an illness for introverts. It's not an illness for but eight and then now you can, you can talk to your friends.

Lauren: Well, as a self-proclaimed extrovert, I truly learned so much about my range as a human being. It isn't incredibly hard to not be able to go and be out in the world and social, I think for anyone who wants to do be doing it and what you just mentioned, which are the gifts of being in solitude, that has been taught to me in a very deep way. Whether I like it or not.

Andy: I think that's the thing that a lot of people with their illness, are suddenly placed in that position. Even if you're not housebound or whatever, you're probably going to have to spend more periods resting and in quiet then you would have done otherwise. And especially when you're sick. And you have unknown symptoms coming up, and voices in your head saying to you, it's never going to get better and people are going to leave you. Everyone you love is going to leave you. Yeah. Okay. Maybe not.

Lauren: No actually that's right. That sounds right.

Andy: But we all have those dark moments. But with that, the problem is when you're resting, it tends to be when you're at your worst, it's not... you're coming home from a concert and just taking a nap or whatever before going and doing something else. You're resting cause your body's telling you you need to rest. And often it doesn't feel pleasant. It's not nice. You're just lying there, in pain or whatever at the mind produces all this stuff. And there it is. We have to learn to deal with this. And as I probably alluded to it, I’m a buddhist and lots of people I've come across with chronic illnesses have to become more spiritual or they've turned to meditation or the practices on. One of the reasons is this kind of in full solitude and in force being in silence. Where your minds coming up with stuff and you want to find a way of coping with or coping with illness. Some people already have religion and it's natural that they stick with them. Well, I find a lot of people have turned to Buddhism because we deal with pain and illness and it can be very good for that. It’s not a miracle cure but a way of dealing with stuff that comes up for you. Buddhism naturally does that. Also, Buddhism doesn't aim to answer questions about why is the universe here or is there a God. If we were to say I teach one thing and one thing only, which is suffering and the way out of suffering. When you've got a chronic illness we've said, there's some gorgeous views. There's also a lot of rocks up your path as well. And there's suffering. And our religion says, I know about suffering. And you go okay that's the one for me at this time. Doesn't mean that people have to become Buddhists. But lots of people just go to a Buddhist class and meditation or just learn some of the wisdom. And I know a lot of people have read the book how to be sick by Tony Burnheart where she calls it a Buddhist inspired guide to living with chronic illness. And a lot of people do that. They don't want to be Bufddhist, but they want to take some of what is taught and apply it to their life and I’ve seen a lot of that.

Lauren: You know, it is so interesting. I like that you used the word enforced because it's like yes, solitude forced time with ourselves deeply with ourselves. Before I, I had ms, I went on it a few different meditation retreats and I studied at Asanga where I used to live. It was great, it was wonderful and I paid a lot of money to go and be in solitude and quiet. It's a lot of money. I took time off of work I did, you know, and it's just wild to me. And I don't want to say that having ms and being in bed for lengths of time for anyone really is the same thing as going on a retreat. It's not the same thing. And it really helps me to put into perspective that sometimes I'll be sitting with someone in my life, whether it's a client or a friend or somebody living with illness and they're saying, Oh my gosh, my illness is really bringing me to this place. For example, like for me, I talk a lot about brain fog brings me to this place of…I can't, I can't be off in rumination cause I've got brain fog. I just can't. So I have to be here now. And I'm like, man, there are people who have been studying mindfulness for years who would really love to be where I'm at at this moment.

Andy: I think it's true. The one criticism of modern Buddhism which is great and transformative in the West is that it does cause costs a lot of money and it that can be restrictive to people who do have illness or want to get away. But like you say, this is, this is the way to do it for free. Get sick. But you're right. It's wrong to compare it. It’s not the same but it does give you that place where you do have to spend a lot of time with yourself and the stuff your head produces, which is incredible, how much your head produces.

Lauren: Well Byron Katie, I don’t know if you've heard of her, but she's an author, she does the work. If you go to the work.com you'll learn about her work and it's all about working with stressful thoughts and how to experience the opposite. And there's something she said once before I got sick. That I even see differently now that I am. She said you can put someone in solitary confinement and they're in hell or you can similarly put like a monastic monk in the spot for a certain amount of time and they could be in heaven. And she talks about the difference internally in the internal world. Now of course the situation is very different being put in solitary confinement. I also want to make sure clear that's not the same thing, but her point that she makes is who's in the cell with you?

Andy: Exactly that. Well I think she's a great writer and a great speaker and I’ve heard you talk about it before and I’m sure a lot of people find a lot of wisdom in her words. I've talked about Buddhism, there's loads of great teachers out there teaching about ways to be in these situations. We don't want to say that it's a question of attitude. If you go into the cell and you’re all positive about it, it's all going to be great. Or if you go in there and you're negative, that's going to be bad. There is definitely something, a learning how to be with yourself, so it's not, or learning how to be with different situations as they arise. Not putting your expectations onto something. Just the one thing this stillness is taught me is being vulnerable and opening up. One of the lines from this poem we were working on this weekend, he says, let go of a hundred years open your hands and walk innocent, and is about that opening to possibility and just not shutting down. It can feel really naked when you're there with your pain, your symptoms, you're not knowing what's going to happen next. The unpredictability of the course your illness is going to take. But there’s...you can put your walls and protection there but they just don't work and you learn that. Trust me, I’ve tried them all. At the beginning, you are just like well if I do this or that I’ll be okay. But it doesn’t work. The only thing is to just open up and be with what's happening. It's pretty scary and we often do need help, but there are times when it actually overwhelms me. I need to call my support network and I'd call somebody else with the illness. So I'm just going through that and they say, I've been there. It's horrible. They don't try and fix it or tell me how to deal with it. They're just like, this sucks. That's great to hear. Just to have that affirmation. Nobody is trying to say, oh, you know, just do this or that. I think one of the problems in Buddhism as well as in some spiritual techniques as people say, oh, you just do mindfulness and it's all you can control. And that's just another lie. It makes things easier. It doesn't make you superhuman. It's still, the stuff's still scary. The scary stuff is still scary. But you'll provide it more of a space to breathe and a place you can be with that. And it's okay if you're scared, be scared. If the negative thoughts about what's going to happen is coming up...you just let them be. And that doesn't mean it's nice. It doesn't mean it doesn't suck. But it makes it easier than if you're trying to pretend it's not happening or trying to stop it happening.

Lauren: Yes. Hearing you say the simplicity of what your community member friends can say back to you, which is yes, it is hard.

Andy: It's being heard, being heard.

Lauren: It's being acknowledged and sort of mirrored your experience of being alive. And I really believe that that's one of the core needs we have. And I know it's just a belief research out there to show. When babies are little, we mirror their facial expressions, we mirror their sounds, we mirror their, you know, if they're crying, Oh, you know, we meet that still as adults. We've, I think we forget to give it to each other.

Andy: I think you're right. And especially, I mean, I'm not a particularly masculine man. I mean, I studied flowers and I like knitting and poetry and don’t like cars. That’s a very stereotypical idea of masculinity, but, and I didn't mind this when I was young. Men in the community tend to...we've ridiculed each other. It's done in fatherly love. But there is not much building up. There's a lot of tearing down. And often men, especially young men, need that cause’ we’re too arrogant. We need someone to say you’re not all that. Whereas I find in chronic illness communities, there's so much support and people just saying yeah, it's okay. I hear you. And, and I think that's something people get in therapy. They don't come to therapy for some deal is to solve their problems. They want to be heard. And family and friends can do that in some ways. Sometimes it's great just having somebody yeah. To listen. Just say I hear what you're saying.

Lauren: Yeah. You make sense.

Andy: And not to minimize, and as I was saying earlier about what Lily said about doctors, but if I could change one thing about doctor’s training it would be for them to basically say I hear you and I believe you. The test results may not show anything wrong but this is obviously something going on for you. When I studied a herbal medicine degree and we had a clinic in London, people would come in and give us their symptoms and we would say okay fine. They looked at us and waited for us to challenge them like a doctor would. Instead, we would say what is going on for you, what can we do to help you work with this? A lot of them this was the first place they felt believed. And that's awful because I think herbal medicine has its place. It's not for treating everything. If somebody is having a heart attack, you don't want a cup of camomile tea, you want some proper drugs and intensive care. Regardless of what modality of medicine or therapy your doing the approach, the patient I think should be the same so when somebody comes in, unless there's a lot of evidence to contradict it in terms of mental health psychosis or something, you should believe the patient. Even in psychosis, what they're experiencing is real for them. Once somebody feels heard then you get that connection and that's where the magic happens when you get two people in that relationship. You were saying before we started chatting about why you did this podcast and why you wanted to talk to people and you could have talked and given us a lot of advice and told us a lot about your story, which would have been lovely. But the magic happens when you interview someone and there is that exchange of ideas and that connection of saying I hear you, you hear me. I just think that’s one of the most beautiful things there is.

Lauren: Oh, I love that you just said that. And it means a lot to me and I think it means especially a lot given where you're are coming from, having lived in such solitude and also, you know, studying mindfulness, which can also get...as a Buddhist, I'm sure people can kind of make assumptions about solitude and aloneness and not being as much in connection socially. In fact you have been so intentional about being in community from where you are, including with that squirrel, including with the retreat. So it means a lot to me because I am like, you joked earlier that you're my field correspondent for being okay so much more in that space of being in bed than I am. Right. And yet I consider myself to be very much in remission right now and so I'm on the other end of the spectrum that you and I can have this conversation and acknowledge how very powerful it is to be in connection regardless of where we're at means a lot. I really do think so. I think that, um, there is a while where I was trying to train myself to be good at like giving a speech because, you know, maybe one day I'll give a Ted talk or whatever and I realized that, okay, yeah, maybe I could do that, but that's just not what I want to get quote unquote good at. What I want is to be in this space, that I'm using a hand gesture to kind of refer to you and me to say like I feel something between what you're saying and what I'm saying and what your energy is and what my energy is that there's this third thing that happens in that third thing is just relationships.

Andy: Yeah, definitely. Well, listen, you're right and I love Ted talks. Ted talks are amazing. I think you could give a really good one and it wouldn't take away from what you're doing here. It would be quite paradoxically, you could give a talk on your own about the importance of interviews and stuff. Well, maybe I wonder if anyone's, ever given a Ted talk where it's two people or something.

Lauren: I don't know, but I would love that. I think, see, that would really speak to me.

Andy: Well, maybe you should. Maybe you and Lily or something.

Lauren: Maybe you'll join me on screen.

Andy: Well, maybe. Interestingly, Buddhist literature, when you look at the talks of the Buddha, people have ideas in religion that it's about somebody preaching and almost every single day, well does Sutra begins with somebody comes to the Buddha and saying, Buddha how can I solve this? How can I fix this? And it's all dialogue. Somebody coming with a problem and saying, well, how do I solve this? And the Buddha's saying this is this. And then they say, okay, but can you clarify this bit? He clarifies that again and out of that, kind of teachings arise.

Lauren: It’s that connection.

Andy: Yeah, I'm a big fan of connection. I think it's just every single time you get two people, you get two viewpoints that generate something new. Get somebody else and then you've got...it's just incredible. It’s human beings...just amazing. We're all so flawed and stupid and whatever. But generally we are amazing. And the chronic illness community, I just love because I'm a member on Facebook of something called chronic creatives. And what it is, is people who love doing art and craft whatever, but they've had to kind of change or generally just adapt or just adjust the size of the task they've taken on so that they can still do this thing. And people produce the most amazing artwork and crafts even when their chronically ill and just these people are just, it's just absolutely incredible. I've got a friend who makes moths out of fabric and then just sort of sets them up in the garden and that just, oh, that's actually amazing. And during all your podcasts, there's so many people who are sick and then they've gone on to set up a blog or a podcast or something else and they've changed their direction but said, okay, I can't do this anymore but II can do this.

Lauren: It's like we have our creative spirit and then we've got these outside forces that show up. Sometimes it is illness related. Sometimes it's something else. I think there's a part of us that would just say, well, I guess that's it. I guess it's over now. But then there's something else in us deeper and stronger. It's like a little flicker of something that says, well, maybe there's another way maybe there’s some other way to channel this creativity I have in myself. Maybe now I have the spark that I never even had before because I'm connecting with a part of myself I didn't connect with.

Andy: That's true. That's true. Before you were ill, I don’t think there is any way you would have just started the podcast out.

Lauren: No. Unless maybe I had somebody in my life but I didn't, I didn't really know very many people deeply.

Andy: But even then it would have been much harder for you to talk one on one you'd have been talking as Lauren, the therapist rather than Lauren, the therapist and the human.

Lauren: I think the bringing my lived experience of it, which is my humility and my ability to say I don't know the answers either and just say like what your friend said, which is, yeah, it is hard. Yeah, it is hard, but you just have to keep your chin up. It's like, no. It's hard.

Andy: And I understand that people for friends of ours and family who don't have chronic illness, I get it. It's tough. You want to fix it too for the person you love. You want to come in and say, have you tried, I'm sure you've had this where people just unsolicited. Will say have you tried pilates? Have you tried colloidal silver? Have you tried it? You know, I knew someone who had MS and they went on a semantic retreat.

Lauren: And it does come from wanting to support.

Andy: Yes it does. So we have to say it's coming from a loving place. But you learn. You want to be heard first. I lived in a Buddhist center in Canterbury. I was going through problems. I was still married at that time but it was coming to an end and after a particularly bad time, I just told a Buddhist teacher, Lisa, all right. I said, look, this is going on expecting to hear back or the Buddhist stuff of, you know, everything is impermanent and stuff like that. What she said was, I've got a tub of Haagen Daz in the freezer, do you want to share some? That was such a lesson for me that what the most appropriate response was in that time was just to say, hey, which she didn't even have to say. Basically, I can see your suffering. Let’s just sit together and eat ice cream and put on weight.

Lauren: I think the essence of what you are saying is what if just being together is enough? Being together in it and showing up and, and not pushing each other away, but just saying, let's be together. Let's sit together. Let's just sit together.

Andy: Without, without any intent. If you can help someone and fix something, then make suggestions. It's a nice thing if you say to someone...somebody comes to me and says, I don't know if you've heard about this treatment. I never mind that. But yeah, just having someone just show up and say, look, I know you're having a hard time, can I just sit with you? I was telling you earlier, I was listening to a podcast today that I’ve listened to for a long time called The Guilty Feminist, which is about a female comedian who's a feminist and she decided that wasn't a big enough space for female comedians so she was going to create one. They deal with all manner of issues that relate to feminism and just being human. And today's was called on health and being heard. And she had two guests on and this podcast was in Australia and that was these two as Australian women. One of whom had multiple sclerosis and another who had a brain tumor. She said that one of her closest friends couldn't talk about the illness. Well what she did too, whenever she was having a hard time, she actually got a plane and came to visit and was just there. And that was amazing. And she said it's great. I've got other friends who I can talk about the illness with, but this woman, she finds it incredibly hard. She finds it too tough to even talk about the fact that her best friend is sick. But she just shows up and often I think, and they were saying, people don't know what to say. And she said, I'm sick. I don't know what to say to a friend who's sick. Then she said, you don't have to know what to say. Just show up and be there and see what happens. Maybe they want to sit in silence, maybe they want to talk about the latest episode of whatever they're watching on the telly or politics or nothing or everything. But it doesn't matter. And I'd say to those people who don't have illness or those who do. If a friend of yours is going through stuff, a new thing, I don't know if I'm going to be able to be there and say the right thing. Don't worry. We're not going to care if you say the wrong thing. As long as it's not deeply offensive, I will probably laugh about it. I've had friends say things and then kind of go, oh, I shouldn’t have said that. I'm just like it's absolutely fine. Yeah. Just show up and show the person you care.

Lauren: I love that message. What does it mean to you to live a fulfilling life and has your health journey impacted your definition of fulfillment?

Andy: This probably comes as no surprise to you given our conversation. My definition now is connection. I don't see there's a way of living a fulfilling life without connection. As a Buddhist who spends a lot of time in quiet and enjoying being in quiet and in solitude, I couldn't live without other people. I couldn't live without connection to other humans, other animals, other parts of the world. It's just, as I said before, that's where the magic is to me-in the connection. Before, it was all about, as an academic, it was all about achievement and learning and to some degree I haven't completely recovered from that. I started writing haiku poems while sick. It was just a hobby of something I didn't have be good at. And then I started getting published in journals and then it became about submitting to each journal and I had to drop that because it wasn't about that. So connection is a big one.

Lauren: I love that. And I, I can relate to both those parts of your journey, the achievement part and the connection part.

Andy: Achievement is a hard thing to put down because when you meet someone at a party they don't say, well, good connections you've made recently. They say they start off saying, what do you do? Right. And you need to have, okay, that's that one of my friends, I lived in Brighton for a while, which is a wonderfully vibrant community on the South coast of Britain which is really arty, it’s very gay friendly and full of really spirtual people and by the sea.It's just an amazing place. And he lived there, he used to still go to nightclubs and he was like in his early thirties and women would always ask him, what do you do? And because he was sick with ME, he didn't do anything for a job. So he just used to experiment with various answers. Not trying to mislead cause he'd soon afterwards say no actually, but he found that fireman was the most, was the best answer. But he just learned that it was something you had to have an answer to. A lot of us feel guilty. For ages I felt guilty when people would say to me, what do you do? And I didn't have an answer to that. It’s so much of your identity.

Lauren: It really is. I would love if we started asking that other question you just said, the party question of, what are some good connections that you've made?

Andy: Who's that woman who wrote that part, was it the invitation where she says, I don't care…

Lauren: The invitation.

Andy: Yeah, I have problems with that cause I think you should care about both bits but I get what she's saying. It's like I don't care what you do for a job. Just tell me when you last saw something that stirred your heart. Tell me something….and I think with chronic illness as well, when you've got other people with chronic illness, as we found that here, conversation can get deep really quickly. It’s like we have limited energy. We are not going to sit around here and discuss the season ending of Mad Men, or I don’t even know if that’s on anymore. We’re going to talk about what it’s like to find meaning when you are suffering.

Lauren: I have a friend with ME and even our text messages are just to the essence of things, Like. Hi, how are you? Good. How are you? Ah, here's a funny meme. It's like, I saw this thing and I knew your heart would speak to it so I'm sending it to you. You know, it's just this beautiful.

Andy: Well, it's lovely. People may think we’re a bunch of hippies. There’s nothing wrong with Yeah, there's something about that that said, even though with memes there is still a place for a good cat meme. Well, on my bad days I do like an animal falling off something as long as they aren’t hurt. Or a funny looking dog.

Lauren: Days when I get my infusions, I just, my attention is just so shallow. I cannot think very deeply about very much of anything. And so I, I have a friend who sent me paint, mixing videos of someone putting two different colors of paint and mixing it like a pallet knife or whatever. And I would just stare at it and then it would auto right play the next thing. And I watch, you know, somebody's blowing up a balloon or whatever and it was the perfect thing.

Andy: I don’t know if you have this same expression in America, it says it's as exciting as watching paint dry.

Lauren: Yeah.

Andy: That's one thing, and I know we should be winding up. Okay. One thing I found in chronic illness is when you're young you focus on so many peak experiences in life. Like, I've been to Paris, I've been up the Eiffel tower, I've been to India and done this….I’m not saying I’ve done these things. But you know, we, we want to go somewhere and do the big things. Well, we learn with chronic illness that there’s joy in the tiniest things. One of my big things, I don’t know if you’ve had to do this…. with chronic illness you have to give up a lot of things that brought you joy. I’m not someone who ever drunk lots of alcohol but I liked a beer or a single bolt whiskey now and again but they weren’t good for me. Lots of sugary things aren’t good for us in general but you feel that more with chronic illness. My remaining vice is good green tea and I've got just like a Japanese iron pot and some tea bowls. Every morning I make cups of green tea with Jasmine and just take joy in the drinking of that. And it is, you just instead of having, I mean obviously I can't go out and do these huge things, so take joy in the small things.

Lauren: Jasmine tea, it's transforming for me. There's nothing like Jasmine green tea.

Andy: So that's really true.

Lauren: It sort of, it takes me somewhere. When I start even smelling the leaves once the water is on them and the steam is rising.

Andy: Oh, it's just beautiful. I'd love to learn the Japanese tea ceremony at some point because the idea of just, I'm doing that so mindfully is just gorgeous. I’m British, we have a thing about tea. British mothers are amazing, it doesn't matter if someone close to has died or you've cut your finger. The cure is tea. But it is, I just think it's amazing, I've read the author Bill Bryson, he wrote his book notes on a small Island when he was married. And he said one of the things that he could never get over was the enthusiasm British had for a beverage. And it was just, just the thing about, it’s just part of our day, a really gorgeous part.

Lauren: It's so lovely. And there's a ceremony to it. Even if you’re not making a ceremony out of it, you kind of have to because you're preparing the mug, you’re preparing the water.

Andy: Even if it’s a chipped mug and an old tea bag, it's still something. And especially if you have somebody at work, we know when people work. Being able to go to the coffee machine or to the tea room and just pause and it’s like breathing out of your day. I’m going to take this time for me.

Lauren: You're speaking my language, even though I'm not from the UK.

Andy: But there you go. You’re an honorary British person and yeah, and it's, it's safer than the cigarettes kids.

Lauren: Oh yes, that's correct. Do you have any funny moments or stories from your health journey?

Andy: I have, obviously I've heard these questions a lot and I've been thinking about them and I had a few and I can't remember them now. There was only one when I was in Switzerland when I was first becoming ill. I'd actually invited over, there was a really big, plant biologist in Britain who I loved. And when I was, um, working in post doctoral research Zurich, my boss, who was Swiss, really lovely man, he said, is there anyone you want to invite? I have to give a talk. And I was like, yeah, there's this guy who I really am in awe of, can I invite him over? So I invited him over. But when he came to give his talk, I was right in the beginning of my illness and I got as far as the university and I collapsed and I had to just go home. And I got on a tram which is a way of getting around out there and I sort of got to within a hundred yards of my house and then I realized I wasn't going to be able to make it as far as my house. So I looked around and the nearest building was just kind of Christian Institute or mission or I don't really know, some sort of Christian thing. And I just walked to the door and up to the reception and that was just a woman there and I must've looked quite bad and drained and she said in German can I help you? And I just said, in German, I'm dying, I'm dying. And she just kind of, you could see her face panic, like what’s going on. Oh, my German was fine, but I'm obviously foreign. I know she handled it very well and called me an ambulance. I didn't die.

Lauren: I'm really glad that you didn’t.

Andy: Looking back on it, I think for most of us now hearing some of the stories it’s funny looking back on right.

Lauren: Oh my gosh. In the moment it probably felt like you were dying.

Andy: It really did. I could hardly breathe or walk the hundred yards to my house.

Lauren: It's very scary and, and actually it can definitely relate to the ability to look back at it and laugh because I have another story which I don't think I've told on this podcast yet. I will at some point of an infusion that I had that was just so, so terrible. But when I look back at it, I can laugh at how outrageously funny it was as a story. So that will be my little cliffhanger. I don't know when I'll tell that story.

Andy: I want to hear the story now.

Lauren: All right. I'll just tell the story. So the story is basically that when you get this particular medication, they premedicate you with Benadryl through an IV and it's twice the over the counter dose. No matter what your body size is. Now I am neither large nor small, but my body was smaller than what that of Benadryl….I don’t know. Something about it did not sync up for me. I hated it and I just felt like I was....it was so bad I couldn't open my eyes.

Andy: Wow.

Lauren: So it felt like I was dying and I was fighting the medication because I was basically being told by them that I should just let my body go to sleep. The problem was I was getting a new medication that could potentially give me an allergic reaction that could kill me. And I was supposed to, I was supposed to tell them as soon as anything itched or whatever, and they said, well, your body has a way of waking up if that happens. And I said to them, with my eyes closed, I said, excuse me, my body does a lot and it's not supposed to do.

Andy: That’s brilliant, I love that. That's another line for your podcast. My body does a lot of things it’s not supposed to.

Lauren: So I was like, I don't know that I'm going to just trust this nurse. But what was funny to me is that it actually kind of showed me what I was capable of in terms of fighting this intense IV medication that went in my arm. I mean it took under a minute to just get all of that Benadryl. And so it was like a lot of medications. So at one point the person that I was with was supportive and they were trying to kind of give the nurses a chance to kind of communicate and said to me, you know, well maybe Lauren, maybe you can just let yourself go to sleep. So at one with my eyes closed, a turned to my friend and I said, I know that I can't open my eyes now and I shook my finger and said I know that I can't open my eyes right now, but I just want you to know I'm not going to sleep. I'm just going to be sitting in this chair and I can hear everything. Well, I never fell asleep. Somehow I fought it. And some people go and tell the story of how that's their favorite part of them, of the infusion is that Benadryl because it's talking feel high or whatever. And I completely fought it, but I joked that I felt like a horse that had been shot with a tranquilizer but just kept slowly galloping through.

Andy: Yeah, we see that the horse is just trying to stay on its feet.

Lauren: But really like my body was shaking. It was resisting sleep. So in the moment it was terrifying and scary and I was very angry at everyone for telling me to go to sleep. But looking back at it, it's one of the funniest stories.

Andy: It is really funny. I’m sure the nurses tell a story about the woman with MS.

Lauren: Right! Who knows? Maybe I'm just one of the many that day who had a weird kind of response to that, but I was being very sassy.

Andy: You were! But I can understand that. I find that even when I'm given the medications now, you know, I don't get them very often, but I think when we've got chronic illness, our bodies react in different ways to medication. Even if you’re not allergic you want to be aware of what's going on and I can completely get that. I wouldn't want to sleep when I was being given a new medication. You want to be there. I can see why it might be somebody’s favorite part if they're having an infusion. Like if they are used to it. Like okay, I'm used to this. Right. I can just go to sleep. I'm used to these nurses. I know they're going to take care of me. Let's just rest this out or something. You know?

Lauren: I think there's also something morbidly funny about when doctors say things like, Hey, here are your options for meds. Here are the risks...and they tell you that some of the risks are you can die and it's like, how is that? Why are we talking in regular voices right now?

Andy: Like how come you're not freaked by this? I find this when you get new medication. You get a, it's the worst thing when you read the sheet that comes with it. It's got possible side effects. Some of it says sudden death.

Lauren: You’re trying to weigh your just like, I really like life. So, well, thank you for giving me some space to tell the story.

Andy: I’m pretty glad. It feels as much better than mine, so I'm glad.

Lauren: Well, I think that they kind of go well together. So what do you have now that you might not have had without ME?

Andy: My life's just so different. I guess it's 25 years on. I was a young man when I got sick, I was a scientist, I think my life would've been very different now regardless. But it did put me on a completely different path and I've got much more compassion, much more connection and just much more have a feeling of what it's like to be human from personal experience. This stuff I've lost too. Butas a way of experiencing life, chronic illness is one of the biggest teachers there is. I know in Buddhism they often say, teachers often said to me, chronic illness is the best spirit to teach. I say, okay, well, yeah, well you have it then, I didn't mind. I'd be less compassionate and less wise…

Lauren: A hell of a trade.

Andy: It can be kind of built up the same. It's a toughie, but it's an intense way to experience life.

Lauren: It really is. That's a great way to put it too. It is an intense way to experience life. It almost feels like an extreme sport or something that you just don't get to choose.

Andy: That's really true. It's just like the chronic illness Olympics. It's like, here you go, you're in this event.

Lauren: Like wow, I didn't know I'd be born into this talent. Okay, so finish the sentence. This is not what I ordered…

Andy: ...but I wouldn't be the person I am now without it. And that's, I guess, the most honest answer.

Lauren: Absolutely. There's no way to go back and see what life would have been, right?

Andy: Exactly. There's no control vlone is there. And I'd say if it was on the menu for somebody I’d totally tell them to have the fish instead. For myself, I’m happy it came.

Lauren: Well, I'm really grateful that we got to spend this time together and thank you for such an insightful and funny conversation.

Andy: Thank you so much. I've so enjoyed this, and so I've enjoyed chatting to you and thank you very well.