0:02
Hello, everyone. Welcome to the pyjama interviews. I'm your host, Michelle Irving. And this podcast is all about transforming our experience of illness. It's time to talk about what it's really like to live with chronic illness, and how to create a life that works for us and our bodies. So we'll be talking about career and flexible work, how to manage other people's expectations, how to cultivate loving relationships that really work for us, having empowered relationships with clinicians, style and beauty, and spinny entrepreneurship. So let's dive in with this week's guest, Sarah Ramey. Hi, Sarah, thank you so much for joining us. I'm thrilled that we are going to have a discussion together. And I want to let everybody know about you. So Sarah is a writer and musician. And as a musician, her work is known as wolf Lassen. She has a very deep story around chronic illness. And she has shared that with us. In her book, The ladies handbook for her mysterious illnesses. So welcome, Sarah, thanks so much for joining us.
1:30
Thank you so much for having me. This is my first interview in a minute again, I love that we're starting this way. It really brings me a lot of joy.
1:40
Yeah, for me, like I've got PJs. And the whole point of that is that these are called the pyjama interviews, because let's face it, that's what we spend a lot of our time in.
1:51
Absolutely. I often, you know, and I mean, I showered and I have a little bit of makeup on. So I'm not my, you know, just rolled out of bed itself. But I often when I will do a zoom call, even with book clubs, or whatever, you know, because I, you know, want to appear presentable or professional or something. But it betrays what it is actually like, 99.99% of the time and embodies a quiet look great. And I'm like, well, it's, this is for you guys. Yeah, and which is, I guess, true of anybody when we see other people, but it's just when you're sick. That's like 90% of your time is just being in your PJs, so I really appreciate the chance to be a little more authentic. Yeah, thank you.
2:41
Yeah, no, that's, that's absolutely what I wanted, I wanted us to be real and raw. So I'm wondering if you would like to share with us what your conditions and experience are, so we can dive into the conversation together?
2:56
Sure. So the first thing is that, you know, took me a very, very long time to get my many diagnoses I I'm, I'm somebody that in this family of illnesses that I have, it's really common to have many diagnoses, I think because they're poorly understood and, and but even for each of those, I mean, it took over a decade to to be diagnosed with any of those things. And so that's just as a as a bit of a preface. So the first diagnosis that I have is MECFS, or chronic fatigue syndrome, as most people know it, which is for I'm sure a lot of your listeners either have this or our know about it, but you know, it's a very debilitating illness in terms of fatigue, muscle pain. Just complete debilitation ranging from you know, you're still able to work all the way to being you know, needing a feeding tube and being completely completely bedridden and dependent on others and I've been all over that spectrum of severity I you know, had a job I worked in politics of all things one time for a while, and I can't even right now that just seems like a lifetime ago that I would be able to to work outside of my my home. But where I am now is much, much better. Then I've also been to the extreme severe end of this spectrum as well. And so right now I feel like I'm this triumph of like I've really come a long way but but nowhere near even the less severe parts of my own illness anyway, so that's kind of what MECFS is like there's there's an incredible elasticity to it in terms of the severity. So that's one of the things and then the the other main diagnosis I have is crps which is extremely painful. Pain Syndrome. And in my case, it's in the vagina and the bladder and the abdomen, the pelvis down the left leg and the spine, it's the way I would describe it to anybody that does not have this, it's, it's hard to understand how painful it is, it feels like you've peel back a layer of skin and rubbed in lemon juice into that layer. So it is like, really? And that's, and it's just constant. And it's, you know, in my case, it's in my pitch. It's, it's bad. But of course, it's invisible. It's, you know, you can't tell and everybody's like, Nah, don't, you know, you look great. Look, yeah, you look great, you don't look like your vagina is, you know, cut open with lemons. So it's, that's a very, that's a very common not to that degree. But that's, as you know, and as I'm sure most people listening know, that's incredibly common is that you can have these really severe problems, but because you look fine, nobody can understand that. And if you don't have a diagnosis that's either familiar to people, or that is taken seriously, a lot of these illnesses are stigmatised. So it's, or they're just not known to people. It's very difficult to say I have x and they have the appropriate response, like Oh, I'm so sorry, I'm sorry to hear that, which is the appropriate response. But I don't think I've ever had any say that unless they are, have the same problems or are in this community. And so for me, those are the two main things I also have, you know, pots, postural orthostatic, tachycardia syndrome, and mast cell activation syndrome, these are all sort of, they travel in the same comorbid family in the chronic fatigue more often. And so I've got a lot of like a side. But those are MECFS, and crps are really the main ones. And then I also have an ileostomy, which is like a colostomy bag. But in your small intestine, instead of the large large intestine another invisible. But like very real thing that was the doctor I just got off the phone with was my surgeon. So so those are the next things that we're dealing with, on the centre.
7:20
And in all of that, does that mean you've spent a lot of time in doctors offices, and you tried a whole lot of different treatments and do some work? And just that sort of scenario? What is this like for you?
7:34
Right? So? Yes, so this started for me 718 years ago now, and I have seen over 100 150, we're just regular doctors, a million alternative things, essentially now, and I've tried, I'm one of those people that, you know, as a function of, I think, tenacity and privilege, like sort of the intersection of those two things has, like, tried everything my parents are doctors. So I had really excellent access to medicine and to really excellent doctors, but that didn't matter. It just, that's part of what the book is about is that when you this, this area of medicine, the mystery illnesses, MECFS fibromyalgia, a lot of autoimmune diseases, this family of people that run together, it's just like a black hole in medicine that you fall into if you happen to be sick with those problems that you just almost can't get even palliative treatment, or it takes a really really long time to get there. And that that's what happened with with me is it took I mean, over a decade to even get like to the first nice Doctor Who who was even taking me seriously and trying to help me even put together just like a self care plan instead of just sending me away with like, I think that this is nonsense and you're not sick at all. That's what most of my doctors said in the in the beginning. Beginning first 10 years.
9:14
How does that work for pain like in pain relief for you? Like Did you have access to pain medication?
9:21
So what sort of yes and no, so I was prescribed quite a few pain medications I this is also pretty common had a lot of reactions, like they're called paradoxical reactions. And so I would take XYZ muscle relaxant or pain medication and it would make my muscle aching much, much much worse or it would make me I have really severe my concentration is so severe that I ended up with this ileostomy but so in my case, if you gave me an opioid and that would like cause like impaction in the colon like I would have to go to the hospital to have it like D impacted so so I had a lot of trauma. What was paying medications, but instead of doctors saying, oh, gosh, what a terrible thorny situation, let's try to help you through it. It was like, because I was having so many problems, it was like, it was like an annoyance to them that I was so sensitive and that I was, I was this, like, spanner in the works, you know, and was messing things up instead of just responding appropriately to medication. And so, for a long time, I just didn't take any medication whatsoever, because a lot of it had made me a lot worse. And, and also, because I kind of got I defected from regular medicine, this is pretty common. And I was like, Man, this is not working for me, I'm gonna, I'm gonna go on the healing journey. And I'm going to do all these things, which there's a lot of good stuff in alternative health. There's a lot of not great, it's not for everyone, not for everyone was. So I did that. But But during that time, I also didn't take any medications whatsoever. And that that also was not right, like, now I am taking more medications that at least help buffer some of the worst. Some of the words just take a little bit of the edge off, which like, you know, that's important. So, so yeah, access to any kind of treatment has been extremely difficult to come by. And, you know, in my case, like, that's what was to me was, so it seemed, this is why I started writing a book was like, if I, a daughter of two physicians, who has the access to all the best medical care in the world can't get any medical help. And I am for sure, sec, like, I'm not making this up, like something is really wrong. And in the system, and that needs to be explored. And that's why I ended up working on that project, because it just seemed like this can't possibly be. This is not just a function of like, wow, you know, not everybody gets great care in the system. Like this is like, this is like no one else does this, that type of illnesses gain treatment whatsoever.
12:16
Yeah, so one of the things about that is, and I've certainly have my own experience, I've had doctors Look at me with my autoimmune condition and say to me, okay, well, you can't take those drugs. So I think we've reached the limit of medicine with you. It's kind of like, unfortunately, I didn't take that as real, I went and gotten a third opinion and got somebody that could help me. And I think one of the conversations that we have when we're having this journey, and I'd like to explore a little with you, is this notion of compliance, as a patient, of people, and then all the things we want to explore because Western medicine isn't working perfectly at all for us. And we go off looking at alternative treatments, some of which work, some of which are not, but it's such a messy area to navigate individually. I think part of that's because we don't want to upset our doctors about, we still want to be the good patient, because we still want their help at some point if this doesn't work. And that's a really big emotional experience. And I'm wondering if you might share with us, you know, what you've learned from that and how you found your own sovereignty to navigate this.
13:44
Yeah, so that word sovereignty is so important, because it is not. I feel like that is not front of mind in the beginning of kind of the descent into this world, like you're so used to being taken care of by the system, like it's just set up to take care of you, you're in this vulnerable position, and it's there to help you and you're not meant to be like self navigating, like it's, it is set up for most illnesses to be like, I mean, I don't want to paint with a broad brush, but for the most part, you know, there's like treatment plans, and here's what here's what we're gonna do to help you and here's, you can get a second opinion. But here are the basic contours of the path that you're going to be on. But with a lot of these other problems, that's just that does not exist. There's no path through the woods, there's very little and so you end up like I said before defecting into alternative health, which can yield some good results, sometimes amazing results for people which is excellent. But if you go back to your regular physician, with those results, or even just tell them that you're trying Most things it can. It can damage your relationship with them because they are very sceptical of those things. I feel like this has changed in the last maybe five,
15:13
five years, I think, yeah, I
15:15
think that that's I've just noticed that like wellness in general, has really mainstreamed into our lives. And that's good. Like, that's really important because to me, it's like completely bonkers, that wellness is not part of medicine and not part of our lives. Like, it's, I mean, it's, it's so it's fundamental, just to, even if you're not sick, though, taking care of yourself eating good diet, sleeping, enough moving, you know, of course, I think those things get kind of abused by like the weight loss industry. But and so we then get really antagonistic towards them, because we've been sort of taken advantage of with those things. But the fundamentals of those things are really important, I think, are really important to just some basic ways to take care of yourself to at least, to at least be told that, that that those are worthwhile things to to really make sure you're getting enough sleep and to really, to at least work with your diet to see like, if you make some changes, would you feel better, like you should feel as you said, like sovereign and making those decisions, not like you're a, you know, wacko, trying some crazy diet like, like, these things are so delicate, because it is also true that sometimes people use these diets for, you know, because they do want to lose weight and like and they're like I dig it for my health. And it's, so you don't want to do that. But at the same time, a lot of these diets were really helpful for people. And it's just important to know that that you are allowed to, to explore, especially if you've reached the end of the road with with what your doctors are offering you that like it's not crazy, and it is not being a bad patient or a bad girl to try things outside of regular medicine, that it's, that's the same thing to do. If the if the medical field is not offering you any type of care or palliative care, then of course, you're going to seek out other types of treatment and that, and that you should feel good about that, especially if it's helping you to not feel ashamed about that. And too, I've really over the years had to learn kind of like what to include with my doctors and what to sort of not include, like I don't tell them about every last thing that I've tried. But if something is really helping me I do now make sure that I'm telling them like, you need to know that this works for me. It may not work for everybody, but it really does work for me and I have tried doing it and not doing it and doing it absolutely makes a difference. And because I think they need to hear that. Because it I know that it affects the way they take care of patients in the future. Because either doctors say to me, Well, you know, you might try, you know, XYZ, I have one patient that it helped him vote. And I'm gonna recommend it as a doctor. But but they do that all the time. And that's good. And that's important that you're giving them that feedback because it will help them get at least have a better toolbox for their more difficult and I don't mean emotionally difficult. It's not difficult, more difficult to understand. Patients Like like me or like, yeah, yeah,
18:37
yeah, I think for me, the way I had this conversation, and I think it's really useful to be specific at times for people as well is, I looked at my clinician, I said, I've given you five years with me, and this treatment isn't working for me. If I take the treatment, I sleep 18 out of 24 hours a day, that's what happens. But I've given you five years, and I'm taking one year to explore alternative treatment. And he wasn't happy about it. But he said I get it. And I'm going as long as you're monitored as long as we still continue to do blood tests and that what I did in that process was like you I had a clinician who was actually a general practitioner, for me. And she happens to be Australian educated, but she is also part of her own Vietnamese community. So she was able to recommend to me go see this Chinese medicine doctor. The one, this is the one and I saw I had that sort of others clinical support. And then I gave that a go and it made some improvement. And I want to be super clear with people about why I think it's important. Tell your clinician, because my condition is a liver condition. So taking Herbes and supplements and things is dicey in terms of potentially changing the experience. But I was clear with him that I was going to do it wasn't happy but monitored it. And I think that that's some of what you're saying is that you've been able to have conversations, because sooner or later, you have to turn up for yourself. And the doctors, not for them.
20:31
Yes, that's exactly right. And a, it's interesting, that's also true with alternative medicine is going to go down the road with somebody for a long time, and they want to keep going. But it is, it is a very important conversation to have with yourself and then with them after six months, a year, however long, you know, they should give you a timeline in the beginning, how long do you think it will take me taking way longer than that, I guarantee they are going to say well, just don't, yes, you just need to give it a little more time. But you do need to just for your your wallet sake, for your peace of mind, be able to say, you know, I really wanted this to work, but it hasn't. And I'd like to explore other things with you, or I'm going to guess, you know, go my or separate ways. And that's important, because a lot of times, in my experience, because my alternative medicine practitioners have provided me so much emotional support, because they believed me, and they were in a way that my doctors were not, it was very difficult to like break up with them. And like, it felt like a real relationship ending and I didn't want to disappoint them. And but it's very important to be able to say, you know, I, this is not working, I can't spend all of my money doing this. And that that's that is okay. They're Okay, you're okay. And it's just simple, again, with the sovereignty, like learning to be able to say that to a doctor in a way that is not, you know, you're not saying it, like, once you've like, reached your very last nerve and you're blowing up at them, you know that you're correct. You're fully, you know, just in your own power, and you just come in and have a conversation with them and can be friendly about it. I think that's really important.
22:18
Yeah. And I think also, you know, there's times when I had the same clinician, where I said, Our take a year, he said, a little way into that, while there might be a part or time where we have to part ways if you won't take my treatment. And I want to be super honest about this, I did not take that seriously, because it was something that if I had would be frightening, and I thought I get his position. But we've got plenty of time in this relationship. And so there is this very human element to your journey that you are in relationship with a whole lot of other people. And there's vulnerability about that. And the more you can stand in yourself and get what I think of as some really serious badass boundaries, the people will actually respond to you in respect to that boundary. That is
23:18
absolutely correct that we think especially if you've got like the curse of the good girl, you think that like bending to accommodate everybody else is like, what is going to make them like you? This is not true. Yes, that being very clear about what your boundaries are, what you can do, what you're not going to do. That is really does Garner respect a lot more respect than, like trying to be nice and likeable all the time. And that took me such a long time. To figure out for myself, I like had to break the curse of the good girl. Like just because to me it felt like a violence to like set a boundary with somebody else, which is not true for a lot of people. They don't feel that way. They're just like, What do you mean, no violence? Like, you just told them that you don't want to take that medication. It's your life. It's you're allowed to do that. I'm like, right? You're right. But in my mind, it doesn't feel that way. There's a whole reconditioning that has to happen in terms of like learning to speak up for yourself and set boundaries, as you said that as boundaries. That's if you identify as like a sensitive person, or like a really sensitive person, highly sensitive, somebody that has boundary issues, or just somebody that's like, really nice. I think that that's something to really take into consideration that some of the work that you might need to do on yourself. Other people need to work on being nicer, right, but you've got to work on setting better boundaries with people so that you can have better relationships with them.
24:55
And this for me is actually what I think of as one of the powers that it This gives you To me, it's a portal into your sovereignty, it's a portal into your boundaries, because you have to get them on board. And, you know, one experience I had with that is there was a time, you know, where I tried the Chinese medicine, it worked a little bit, not a lot. And there was a biopsy and the physician that I had said, you do not leave the hospital today without treatment, you will be in organ failure within six months if we don't do that now. And I looked at him and said, okay, but that drug makes me think about being super clear with you, slitting my wrists, not as emotionally, but when I take that drug, those are the thoughts that come out, because there's a psychological process. So I will not take that drug without a psych consult. And in a public hospital, he had a psychiatrist to me in 45 minutes, wow. And so I want to share with people that actually setting this boundary about you creates a different response in your physicians. And even though it's uncomfortable for you and them, you will be very clear on back your boundary. And you can hear how clear I was, you know, and, and it will work for you. And if it doesn't work with them, you find somebody that it works with
26:25
us. And it's much better to do that, instead of accommodating to them and then ending up in a much worse place for yourself. It's much better to have the uncomfortable conversation. And you know, sometimes as you said, sometimes that doesn't work. And like you know, they don't respond well to that. That is okay, you can find another doctor. And you should, instead of going along with somebody that's forcing you to contort at every juncture to do things that make you feel to make you feel suicidal. I mean, that is I've had the same experience where I was put on a drug that made me suicidal. And this was very early on. So I was really young. And I had no idea that that was a risk and and that that wasn't like me. Didn't know. And so it took my boyfriend at the time, he was like, I'm taking this away from you, you cannot take this anymore. You can call your doctor and talk about like, tapering off of it, but I'm taking it away from you, because you are not yourself. And this is terrible. And I was so mad. But he was so grateful to him like once that started and I did call my doctor. And he was like, well, that is a problem. And with this medication, I was like Why didn't you tell
27:38
me? Yes.
27:39
And he was like, you're you're right, we are going to start tapering you off of it. And you know, and then and then as soon as I was off that gone, all those thoughts gone? And it was like, wow, yeah, that's incredible. There, again, things are getting better. People are much better about that, these days in terms of warning you ahead of time making sure that they're monitoring that. But at the same time, as you said, is so important, if that it to know that that is a risk or or any other type of risk, like you shouldn't be sleeping 20 hours a day, 22 hours a day, like that's something you absolutely get to speak up and say this is not a life, we have to we need to think about something else. Like there are things like that, to just know that you're well within your rights to speak up for yourself and to ask for different or better treatment or to rethink things because that doctor would not accept that veterans themselves, right? And so you just have to put them in your shoes and be like, what would my dog wear Dr. So and So except suicidal ideation and sleeping 22 hours a day. So I'm going to have a conversation.
28:51
And one of the parts of this journey that comes up when you're exploring medicine and thinking about looking at some alternative. There's two parts to this. For me, I think in a common experience, one is the response of like, whoo, I don't think you should go away from your doctors or like that sort of thing from family, friends, colleagues. And the second thing is the people who mean well, but say to you, but if you tried meditation, or maybe if you just, you know, I always use the example of a journal. Yeah, or just drink more green juice. That's my example. And I wanted to be clear with you actually, I had a deep meditation practice, and I don't actually meditation was powerful for me because it enabled me to have the awareness of the suicidal thought as separate from me. And meditation is good at helping me manage experiences, but it certainly hasn't cured. Sure some of my conditions. So I'm wondering if you might share with us from your experience, both what's happened and how you've navigated that Because you talk about getting people on board as your allies, which is amazing.
30:07
Yeah. So that was this, this is my real achievement and 17 years was going from feeling so at odds with, especially my parents, but you know, friends, family, just the whole everyone. You know, and I think this is everyone, not everyone, but if you have these types of illnesses, this is the norm is they don't believe you, they, they either right thank you should, as you said that you should just follow your doctor's orders, even though your doctors are like, my, I don't think you're in my in my case. Or they're, they themselves are going to alternative health. And they say like, have you tried, you know, gratitude journals and kale juice, and there's, so for me, the experience, getting people to be allies, again, this does come back to boundaries, it is entirely about boundaries, essentially. And so especially for me, the big transformation was with my parents, my parents are such traditional doctors, and they, especially my dad, I write about this a lot in the book, but especially my dad, he was like the quintessential, like Pooh poohing doctor that like, doesn't believe in any of this alternative nonsense, and was the first person to be like, hey, maybe you are depressed, maybe that's what's wrong with you. And, you know, no shame in that, like, we'll just put you on some antidepressants. And, yeah, this is no, he was not trying to, he was not we were not like, intentionally at odds with each other. He just, he didn't know what was wrong with me. And he just and that's what a lot of his colleagues were saying was wrong with me was that I was depressed. And so especially when I defected into alternative medicine, that there was this huge rift opened up between me and my dad, especially where he was just, it was just heartbreaking for him that I was like, you know, wasting all this time and money trying all of these things that he thought were stupid. But that was the first time that I started to get better was when I started, acupuncture was really helpful for me. And at the time, yoga was really helpful for me, that was sort of before things kind of fell off a cliff with me. But that has nothing to do with yoga at the time. Yeah, it was really helpful for me. And so in terms of like, converting adversaries into allies, this didn't come until I was like way, way into the journey. And I was so heartbroken with this feeling that my parents still weren't on my side. And so I just realised that what was happening was that, I would tell them, I'm trying this or whatever, and they would roll their eyes, and I would feel really hurt. And that would kind of be the end of it. And that would just keep happening over and over and over and over again. And I just realised that it was not going to change, they were not going to come around that I really needed to like, reach out and like grab them by the lapels and bring them close into me and be really explicit about that. When I say I'm trying whatever, acupuncture, and you clearly think that that's dumb, that, that hurts me like in the deepest, profound way, because you are one of the only people left in my life that is like an actual, like, close relationship of mine. And I need you I need you to be on Team Sarah and it doesn't feel like you are anymore. So the first time that I had that conversation, he was kind of hurt by that. Yeah. And I didn't want that's part of why I hadn't done that in the first place. Because I didn't want to hurt him. And he, but I just realised I was like, okay, but it did change his behaviour. Correct. And so I was like, Okay, I am actually in the beginning, I just left it at that I was like, well, I've made a dent. And that's all I can do. But I realised I was like, That's not true. What if I just keep having these conversations, these really brutal, difficult conversations with my dad and my mom, explaining why what they were saying was so hurtful to me and why it felt that way. And why I didn't want to tell them because I didn't want to hurt them. But that my ultimate goal was the same goal as theirs was that we wanted to have a good relationship and I was like, the only way that we're going to get there is if you're in my corner and you're not in my corner right now like you're you don't believe in these things and like, so what what can I do to help you come around and what can you do to just come around and we just had these conversations over and over and over again, which
35:00
Earlier iteration of myself would have been terrified to do. But this later version of myself was like, that's the only way that this is going to change. And it's already painful. So why not just experiment with having these really painful conversations if they're actually moving the needle and just keep pushing and keep pushing. And in the end, it worked. Like, if I just take my dad's example on my dad, I would normally talk to him before this once every three months or something, and it would be like a fraud conversation that was painful. And I would end up crying afterwards. My dad calls me every day.
35:37
Wow.
35:38
Yeah. And he's, and he, we just trained my, he's like, well, what's new today? And I'm like, well, dad, as you know, nothing is awesome. And every day is exactly the same. And he's like, I know, I understand that. He's like, Well, why don't you tell me about your pain. He's like, tell me about your pain. I want to listen. And I just tell him about my, it's like this miracle, where he's like, Ah, that sounds terrible. Because he learned that it doesn't work for him to be in pain, because I'm in pain. Like, that doesn't make me feel any better. It works for him to say that sucks. That's terrible. I'm so sorry to hear that that's happening. And that he has an infinite resort. He it's no skin off his nose to just say that once a week to say I'm so sorry that this is still happening instead of being disappointed like, oh, you're still sick?
36:35
Seriously, you're
36:36
better you're still sick. Yeah, exactly. I was empathetic last week, and you're still sick. You know? We and it's but it did take being really, really clear about that of like, I need you to ask me how I'm doing, knowing that the answer is going to be bad, and that you're just gonna have to listen to me. Briefly, not a long conversation briefly say it's excellent. A lot of pain has a really hard day. And you're gonna say, That's terrible. I'm so sorry. My poor daughter. The end. And it's like, din this incredible. I've made my dad should write a little book. Because it really? I would not. If you'd ask me if that was possible. 10 years ago, I would have said 100%? No, like, impossible. My dad does not have the capacity to do that. He doesn't have the emotional ability to do that. No way. And that was not true. Yes, you just needed to be kind of pushed. He needed me to be kind of relentless, right? My cat just jumped. And, and it worked. And I wouldn't say that that is like, definitely possible for everyone. But I do think it's an important example, because I really was the type of person that would listen to this conversation and be like, Yeah, but not my dad.
37:57
That doesn't work. I did. Yeah. I think for me, this is so interesting, because I have two parents who have mental illness. So naturally, when I got sick, my father would say, Oh, well, you'll have to work that out on your own, or I can't help you. Or this is all too much for me. And so that those conversations were devastating. And I also had a lot of other people, particularly a man who I had worked for when I was a graduate, who really stood with me through the emotional experience. What I want to share with people about that, and the reason why I think talking about these things is important. And it's really important if family and friends have the opportunity to hear these sort of conversations, or podcasts or wherever the information is, is that as I became a guest on more and more podcasts, really talking about the experience, and the emotional journey, and the depth, and what I had learned work, my parents and my brother started to listen to the podcast.
39:18
Yes, yes, that's such a good point. Because that actually is part of what brought my parents along to is me working on this book. And like them kind of, it's something about like us sharing outside of the context of just the conversation between the two of you, that like takes some of the emotional pressure out of it, and they can actually hear it better. And or instead of it feeling like an accusation or emotionally fraud or something like that. And so I think that that's such a good piece of advice is to share in a way that other people may be able to read what you're saying without it being directed directly towards them because even though I did do that with my family, and it really helped me. I think that that, like, what you're saying is, is such a good piece of advice as well, especially if that's too difficult or it's not working. And I was also gonna say that, if that's totally impossible with it with your family, which definitely, maybe with some people to just choose your other, somebody else, anybody else I can perform these functions for you and that you're doing that for them of course, as well. It's not just one way, because we have to this is true for anybody illness or not like if your family is not there for you, you have to find your chosen family and that illness is is so funny to me, people, when, whenever people say to me like, well, you just got to focus on the positive and the bright side, those people when I, and then it makes me feel ashamed that I've talked about my illness or being in pain or whatever. But then I like spend some time with them. And I'm like, wait, but you're just kvetching about your daily life all the time. You're complaining constantly. It's just that they're not like serious things. And so nobody thinks of it as like, you know, heavy or or you're being a downer. And so there and I'm like, No, no, you get to kvetch about your illness, there's no like, Oh, well, that's the one thing that everyone's allowed to complain about their day, but not you. It's like, No, no, no, you got to train people, to just let you kvetch about your stuff as if it's being stuck in traffic, or as if it was your bad boss, or whatever it is, it's like that chain is an important part of being a human being, you have to be able to kind of get get it out. You don't want to linger there too much. But it's not true that other people are like, who are not sick or like,
41:50
constantly positive, or? Yeah, I think this is such a great point. And in terms of those people that help. For me, it's again, the direct communication that we've talked about, look, direct communication is your own tool and ally. And yes, it's messy, and you're not going to get it right the first time. And there's certainly ways in which I think you can have that conversation. And I've actually got some tools for women where I say, a list of the things that you can say, yeah, yeah, so I make sure that's in the show notes for everybody as well. But one of the things I found in that process is, people need to know that you are not asking them to do something for you. Like you're not sharing the problem for it to be fixed. And it's hard to be with me in those places, because if I've got vertigo, 24, seven, and I'm throwing up while lying in bed, like the world isn't falling, but that's the extremeness of the pain. You know, my beloved partner actually can't do anything. But what I said to him is what helps is when you hold my hand, yes. Because actually, I can't have a conversation with you. Because I feel like I'm falling like 24 seven. But if you hold my hand that is so helpful and so meaningful. Yes, I think we have to, in these circumstances with compassion, understand that people want to help, and they feel helpless, and give them something that does help that they can do.
43:37
Yes, and that it takes, I think yourself being vulnerable, like because sometimes asking for those things is like, why can't ask somebody to do that. But it's like, for them, they're so glad to be able to do anything, they are grateful that you said you can do this small thing. You know, holding somebody's hand is no big deal. But to some of us, like might feel so silly or really wouldn't feel silly to me, but like, whatever Different people have different hang ups about different things. And it's just important, I think to remember that people as you just said, people really do want to help you a lot of people do and that it's worth thinking through even the smallest things that like you would like that would be like a gift to you and to be willing to ask people for those things I've done. A lot of that like something that comes to mind is when I was coming out of the worst, I was in just the worst bedridden, my mom feeding me broth like as a way to survive for two years. And when I was coming out of that I was so really really really sick. But was like starting to have little spurts of like being able to like leave the house but I couldn't really like wasn't enough to like, go do something. And so I would, I just talked to a few of my friends and I was like, could I, like, Come meet you at the concert that you're at for like, five minutes? Yes, meet me and like, treat me like, this is this big deal and we're having fun. And then it's not a big deal that I have to go right away. And like, you're not going to ask like, oh, what's wrong? Oh, no, no, what happened, you know, like that you understand that this is the whole thing that you're going to do for me, is to make this like five to 10 minute outing, like really fun. They're like, yeah, that sounds super weird and fun. And, and we did that or like, another friend would like come by and pick me up with like, the seat already reclined and she would just drive me around to sun in a in a circle until I was like, I gotta go home. And, and with no other agenda than that, she was like, I figured it'd be nice to get out of the house. And I was like, God bless you.
46:06
My whole body just saw that the idea of somebody turning up, already attune to your experience. Like, I don't have to navigate that. I don't have to negotiate. I don't have to stand here on the sidewalk while she gets out of the car. And does man. Oh my God, we just saved so much of my capacity.
46:26
Totally. Exactly. And to so to just, but that did take me like reaching across that divide and being like, okay, but I, you're not because they wouldn't know that. Like, I needed those types of things like, so I had to say, Okay, here's where I'm at really like one bar of energy, but like, what can we do? What can you guys help me think of to do here? Or here's some ideas that I have. And they were so glad to do that. Because they are human beings. And people want to help each other? Not everybody, you know, but yeah, I feel like one thing that illness does give us like a real sense of like, who your real friends
47:10
are humanity and the reality of it. And I want to really start to ask you, then, you know, you've had all of these experiences. And then you have the most astonishing music, like just beautiful music that you create. Like, how, how is this happening, Sarah? And the notion of a name wolf last in Florida as well. Can you share with us a bit about this aspect of you? Yeah. Well, thank you. I was super nice. I so I have always been a, I guess a singer. Like I was always like, in musical things like that. But then, when I got sick, I was housebound all the time, and was just, and especially in the beginning, like it was like this horror of kind of being trapped all the time. And I didn't. I was like, What am I going to do? What am I going to do with myself? What am I going to do with my life, I'm wasting my life. And it was just this real. It was really scary as anybody knows when they're sort of like, when they're past the point of like, Oh, I might not keep it. Like, because in the beginning, you're like, well just get better. But then there comes a point where you're like, Wait, can I get better? Oh, no. And so that had happened to me. I had moved at that point to San Francisco to see an acupuncturist. Actually, that was part of why I moved out there and my whole reason. But I had barely any energy, but I had my mom's guitar did not know how to play the guitar. But she had sent me with her guitar because I always thought that one day I would learn. And I just as like a way to kind of fill up my days with something better than just pain and illness. I started to teach myself. Do you know Leonard Cohen is the songs of Leonard Cohen. There's Leonard Cohen is this incredible artist, but his songs are not difficult. It's like all songs, all chords you can play right away. They're they're pretty easy to learn how to play. And so I taught myself sort of like Leonard Cohen's like entire repertoire. And then as I was going along, I was also kind of getting better physically. I was seeing acupuncturist as I mentioned, and, and so a friend of mine was like, I think you should go down to this open mic in San Francisco. It's this really popular open mic. I think you should go down there. And I was like, I can't I'm sick. I can't. And he has like, Wow, he just, you know, kind of we were just talking about He's like, you just go for a little while it'll be you'll be fine. And so I, I took my guitar down there and I put my name There was like so many people, there was like hundreds of people. And I was like, Oh, no, this is terrible. I've made a mistake. But I still I signed up I put my name in is wolf Larsen, which is my grandfather's name. And I had always thought that if I check a stage name, which was like to me like 50 steps forward and like, because that would mean like, I had taught myself to play music, and I was writing music. But in my imagination and my dreams, I was like, I'm going to be a musician one day. And if I did, I would call myself full force. And so I was at this open mic, and I was like, Hey, I think that time has come. And so I just wrote my new down as well person, and I got picked, not everybody gets picked, because there's so many people, I got picked. And, and he was like, well for us. And he's like, Who's that? That's your real name? And I was like, Yes, yeah. Yes, it is.
50:57
And I went up, and I played this Leonard Cohen song, and it was just so like, liberating for me to do something with myself that felt like I was using a gift that I had, instead of just like rotting away at home. And like, I left right afterwards, I didn't stay all night, like, I left. But I started going to that open mic pretty regularly. And I would just go for for a while. And as I was getting I that was at the point in my life where I actually got better, like, not all the way better. But yeah, I was able to do more stuff. And so that was the time when I was also like, becoming well farson. And like, told her name as well for us. And then I started to write music. And it was this incredible time for me because it was like, I felt like I was really coming alive in like a multitude of ways like my, my I was physically getting better. But I was also like, artistically becoming this person that I had always wanted to be and I don't think believed that I was ever going to sneak down. But it was happening. And it was really a very special time and also made quite a few friends at that at that open mic. And so just like a lot of pieces that I actually do think they're again, like meditation, they're not like the cures to illness, but they are important components to wellness is like a community doing something that like does feed your soul like these things, they really matter. I do think that they amplify whatever health you have coming on day at least boost the signal a little bit, maybe not like their cures, but they're it's some and I'm somebody that's like, I'll take like one more bargaining shoe like Oh, yes, please any boost, though, of course. Like, I mean, I started getting asked to play shows and do all this have that was very difficult, because it was too much. And I would like have these huge crashes after playing shows. And so, you know, it was like finding like, okay, so I can do more than I thought I could do. But I cannot do. I can't be like a touring musician or do the things that all my other music friends can do. But that's okay. Like I this, I can do this. And so I recorded an album. In my home with a friend of mine, I asked him to, to, he only recorded one other album, but I really liked it. And I was just like, Listen, I cannot go into a regular studio. That's 10 hours of doing something is like a 100% impossibility for me. Yeah. So can I hire you to just like, come over and like one hour, maybe two hour segments? Like, it might take us a year or two years. But like, Can we try. And he was a good friend of mine. And he was like, whatever you want, we'll say, like, we'll make it happen. And we did. And like it took a very long time. But I'm so grateful because now I've got this record that like I just wouldn't have been able to ask for the help that I needed like this, this type of help that I needed from a friend I paid him and everything but it just was a very different type of working relationship that you normally have as an engineer. Yeah, now I've got this record and it's actually part of how I support myself is through royalties from the music licencing and royalties and things like that. And so it was just this like incredible. I'm always very wary of like the gift of illness. Yeah. You know, being it's not it's just when other people are like, aren't you glad? No, I'm sick. And I'm like, No, but that's not the same as saying but there are some things that I am deeply grateful for. Would I maybe trade them back for my the full boom of health? Yes, I would like that is been My case, yes, I would, I would trade like, you know, you know, crps for, you know, recording a record but, but that doesn't mean that like illness doesn't give you these these incredible things sometimes. And it it at least sends up these like blooms in the middle of like an otherwise like, barren desert. Yeah. And that's, that's good. I mean, it's beautiful. And I feel so grateful that those things have, I feel so grateful that those things have like presented themselves and that I followed them and what and didn't just say, No, I'm too sick to do that. Because
55:40
I was saying that to myself in the beginning. And if I had allowed myself to not even explore it, then I this whole dimension of my life and creativity. And I mean, just so it's such a huge part of my life now, that door would have remained closed. And so I just feel it's I think about it a lot when new things come up, because there's a lot of things that I'm right, no, I cannot do. But it I was reminded to like to at least try to kind of always push the edges a little bit. And to try to bring in more soul nourishing things, instead of just preemptively saying, No, I can't do that.
56:26
I think for me, I always look at it. I want to be able to do this in a way that works for me and my body. And that's what I really want to share with women. Is that your frame, it's not about this, or getting it or doing it the way that everybody else does it. It's about Is there a way that is unknown, like no, but nobody's done it this way. We don't know if you can do it this way. But I, for me, it's like the intuitive the dream, the spark, within your heart of what you want to do is there for a reason. It is it's not just there to crush your soul, it's there for a reason. And as you say, it might take two years to do this at an hour a time or an hour, once a month. But find that part of you if it's whispering to you trust it.
57:23
Yes, I just I cannot agree with that. More and to be willing to let it take the shape that that it can take in your life in that and for me. So like after that period, after the record came out, that's actually when my health just like fell off. And so for several years after that I couldn't play music in front of people I couldn't even sit up. But I still in like the worst times would like remember, I would try to lie there and write poetry in my mind. Even though I couldn't do anything else. I couldn't watch TV, I couldn't do anything else. But if I could, if I could somehow like grab on to that to remember to even remember that that was like available to me. It was it would make that day be not a waste or not feel like a waste to me like otherwise it just felt like I was like being tortured alive to have had this like one thing that I held on to and like those songs are some of the like those songs are in the record that I'm working on now are were written in that horrible time. And it just, I just feel like connecting to Yes, like the, to your soul and to your soul's whispers and to just the creative part of yourself, even if it's just whatever you're physically able to do. I want to caveat that i a lot of people that feels really out of reach, like they they're really, really, really sick, but to just try to stay in that frame of mind that okay, but what can I do, even if it's that I'm not moving, but I'm writing poetry in my mind, in the stockroom. Like, whatever that is in your life, if you're able to still draw a little bit, you're a painter and you can't sit up and paint but you're still able to sketch a little bit in your book. I think that that is usually worth it. And it brings this this real sense of meaning into a time that can feel really meaningless often and and that's really worth, like trying to find.
59:39
I mean, it's so beautiful to hear this talk about the reality the authentic reality of the experience. And for me what that was is that I read mythology when I could read and I found the myth of Persephone Annie, who's Queen of the underworld. That absolute map and The psychological map for chronic illness. That's what I read about in my book. Oh,
1:00:06
amazing. Yes, there's a whole thing about the heroines journey and per Stephanie's journey, and that that's the journey of trauma and illness and the healer. And that will work.
1:00:19
Really want to be clear with our listeners, you know, I came across Sarah through Twitter, I came across her through an amazing community that Brianne bennis runs called no end in sight. And she reached out and here we are, and it's beautiful. And authentically, I've read Sarah's articles, but I hadn't had the chance to read her book in the week and a half since we connected. But this is fantastic. And it's so reassuring. Because what I want to share with women in this moment is and Sarah, you, it's amazing that this is part of you. And it's also embodied in EU, pr 70 is taken as a maiden and she goes to the underworld and she becomes a queen, and she rises back up to the overworld with her sovereignty. And that is the backfit honours. And that is exactly what you have shared.
1:01:13
I can't believe that that's something that you're familiar with all set that was for me such a huge lightbulb moment was like oh, I'm not on the hero's journey. Like if you think you're on the hero's journey, you're gonna feel like a failure. And this is different, this is a completely different archetype and way of seeing yourself and seeing how, what the path is for you what the, the the structure of the path is, and and it's cyclical to just like, you know, she's, you know, it's it's ongoing down into the underworld over and over and over again, and rising up over and over and over again. Yes, it's it, which is exactly the story of illness and trauma. And I mean, it's the other story, it's the dark twin of this, like other heroic upper world story.
1:02:09
It's an emotional story. It's a, it's this is the map of your emotional journey. There's a physical journey, but this is the map of your emotional journey. And I just really want to share with you, this is so exciting, because that's what I found helpful. And the work that I do with women, I run an eight month programme for women with chronic illness called Queen of the underworld. You do? Yeah, so it's something I've been really immersed in and it's releasing this year. It's part of why I really wanted to talk to women in this PJ interview series, McMahon's This is the journey of a this is so beautiful, and there is a psychological map. And you can be guided through that as well.
1:03:03
Totally. What, what does serendipity? I mean, it's not even scared because it just is what? That's the story that you and I are both and so it's not serendipity that we're both guided to it eventually, because that is what's happening. Yeah, look, thanks
1:03:22
so much for talking with me and with us. Sarah will put in the show notes, all the links to Sarah's website where you can find both her book, which I know is just so deeply personal. And you can find links to her music. And we'll make sure that Sarah has connected with us throughout the whole journey of this PJ's interviews process, and that you are part of the world with us and we are part of the world with you. Thank you so much for your time, sir.
1:03:58
Thank you so much. This was such a joy doing this with us. So thank you for having me.
1:04:06
Talking with Sarah Remy is one of my favourite things in the world to do. And I'm delighted that you were able to hear us discover each other and the way that we both use the queen of the underworld mythology. If you want to join this deep programme that I run, you'll find all of the details at WWW dot Michelle Irving I RV i n g.com.au. We start in September 2021
Transcribed by https://otter.ai
