Episode 48: Pursuing Normal Again with Kathryn Lund

0:24

catherine Lund lost her mother when she was 25 years old. The amount of grief from that loss brought about a whole slew of neurological symptoms. That she is still learning how to accept and manage and live with. She brings her story to the pursuing uncomfortable podcast. She wrote a book called the things we left sleeping it's available now and tells a story. Of what it is like living with all of these neurological symptoms. And how to pursue a normal life. Once again, I'm pleased to introduce you to Catherine.

Melissa: 1:02

Catherine, welcome to the Pursuing Uncomfortable Podcast. How are you today?

Kathryn: 1:08

I'm, I'm good today. I am good. I was a bit stressed, but I've sat down, got myself a cup of tea. Exciting novelty mug. I'm all ready to chat, so hopefully we're gonna have a good conversation.

Melissa: 1:21

We're gonna have an excellent conversation, and clearly by your accent, you're not joining us from Central Illinois. Can you tell us where you're from?

Kathryn: 1:30

Of course. So I'm from the north of England. I'm originally from a county called Shire, but I live in its arch nemesis and rival Yorkshire, which is just over the border in the um, county town, which is York itself, which is a beautiful world, medieval city. So it's a pretty impressive and beautiful place to live. I'm very lucky.

Melissa: 1:51

It sounds amazing. I might have to visit there someday.

Kathryn: 1:57

So Catherine, tell us a little bit about yourself. Very hotpot.

Melissa: 2:01

Oh yeah, I'm sure.

Kathryn: 2:02

Beautiful. Walden City, Catherine London. I live in a beautiful place. I'm a very lucky person. Um, I am an author. I have a book called The Things We Are Sleeping, which is all about the parts of ourselves that we lose as we make our journey through life and what we need to do to wake them back up and be the person that we wanna be. I work in an arts and pictures framing, framing shop, which. A really interesting place to work when you are very, very nosy. Cause you get to see what everyone's buying, what art be buying. Everyone's buying huge pieces at the moment. Everyone's obviously very bored with staring at their walls. So everyone's buying huge bits of arts and get to see everyone's certificates and graduation pictures. So I spend, yeah, four days a week work and one day, two days a week trying to be a writer. And that's my sort of work balance that I try to.

Melissa: 2:53

That sounds like a lot of fun and I love that insight. So if we wanna keep with the trends right now, Mike,

Kathryn: 2:59

pieces moment where, Yeah, I mean, in lucky ways where I do a job, which suits me is good for my health, it fits in with what I want to do. So yeah, very aware that I'm in a very fortunate place at the moment. But

Melissa: 3:18

that wasn't always the case. And judging by the title of your book Things We Left Sleeping I would imagine there's quite a story there. So what

Kathryn: 3:31

inspired you myself to had a very, you, a very normal, very lucky childhood. I grew up with my parents. I, you know, there wasn't a lot of money, but there was a lot of love and it was a very happy, very stable environment. But, Like all families, you know, we've had our problems. So, um, I lost both sets of my grandparents by the time I turned 18. And then when I was 24, I lost my mom. She got pancreatic cancer, which pretty much means you get a diagnosis and then within six weeks she was dead. And then just after that I started really badly developing neurological symptoms, started having seizures, started having absences, started having a lot of chronic pain. So it became. Very difficult to sort of deal with the situation that I was in, deal with, these very big changes in my life, which sort of came along at the same time, which was the death of my mum, which completely changed our family, completely changed our family dynamic. And then my all illness, sort of it being ticking away in the background, but sort of coming out and coming to head at the same time probably be because of all the stress that related to that. And that completely changed me. So I had two huge changes in my life at the same time. And really, Huge grief cuz I had the grief of losing my mum and I had the grief of losing the person that I was before I started to become ill and started to lose all these parts of myself that I just couldn't keep, keep hold of. And you know, that is where the title, the Things We Got Sleeping comes from. It's those things that you just let lie and let go and drop because you don't feel like you have the energy to have them in your life. And you don't feel that that person. That cared about those things, That person that you were before is, is there any longer and you let them drop. And that's a, a really sad thing and a lot of my time over the last 10 years has been learning how to be okay with the ones that I can't get back. They're just gone. But also then how to pick back up the ones that I really want to keep and want to take forward with me, you know, in into the life that I've got now.

Melissa: 5:36

Wow, that's a lot. Now, did I hear you say you were 24? Yeah. When your mom was diagnosed and passed

Kathryn: 5:45

away? Yeah, and that's, I think that's really difficult. Mean all ages are very difficult to lose a parent at, but you know, you go through being a teenager where you're not really connecting with your parents very much and you're doing everything you can to move out. Me far away that I went to university at the other end of the country, not because I didn't like my parents, but because I wanted. That independence and you go away and you become this person and suddenly your parents are people that you really wanna talk to. Again, you wanna connect with them, you wanna go places with them. And I just started to have that run up relationship with her and then she was gone. And then, you know, all my friends started doing things like getting married and having these big family events. And you become very aware. You know, you've lost a parent at a time when those things are starting to happen and they're never gonna be there for yours. So it's, it isn't all, all times are difficult to lose a parent, but it's difficult to lose them, I think at a time of transition when you are going from one stage of your life to another. Cause the sort of signal, you know, her death was the end really of, of, you know, my early twenties and it was the start of the rest of my life and she's, she's not gonna be there for it. And that. A really, really difficult and depressing thing to process.

Melissa: 7:04

I can imagine. I can remember who I was at 24 and. Wow, that's, you're right. That's a huge time of transition in your life. That's a time when you're just starting to get your feet underneath you or imagine what it, or see that vision of what it's going to look like when you do get your feet underneath you, and to have such a significant loss at that time.

Kathryn: 7:31

It's a, it's a very informative time, and when you've been lucky enough to have parents. A big influence in your life and you were very support My, you know, my mom was a very supportive person. She was a teacher, she was a special educational needs teacher. She was a music teacher. She was a very nurturing person and a huge influence in my life. And to lose her at a very formative time really does make you feel like you flailing around because this huge safety net that I had had gone and then, When I then started to become ill as well, when you're ill, you want, you know, that parent, I mean, my dad is wonderful and my dad took fantastic care of me. I'm not taking anything away from my dad, but if you've got that relationship with your mum, you want her there, and to have her not be there and then not be there, I'm very ill, was also extremely difficult. And it makes you feel like really the universe is just ganging up on you because you're sort of like, Well, what else is gonna happen next? You know, How much more am I expected to to shoulder at this time? Just not capable with. And for years, I, I did feel that like I absolutely cannot cope with, with where my life is and with the things that are happening in it. It was really, really difficult.

Melissa: 8:42

And then things got worse. You started getting ill, What, what were some symptoms? How did that unfold in your life?

Kathryn: 8:53

Sorry, can you say that again?

Melissa: 8:55

Sure. I said, and then in the middle of all of that, your illness began in the middle of that grieving process. What were those symptoms? How did that manifest? What did that time look like as you started to be, to get

Kathryn: 9:09

symptom's? An interesting question. Cause I mean, everyone who's listening, when you've had that grief, you feel. So disconnected and so disassociated from the world. You feel like you've taken this side step and you're very numb and you're very distant, and you know, grief is really, really isolating. And then the neurological symptoms that I started to present was to become very disassociated. So I'd be watching, you know, a TV program that I knew really well. It would be a repeat of something. And I be aware that I, I know this program, I know who these people are, but I don't actually remember watching this before. I know that I have, but I can't remember what's gonna happen. I can't remember what these people are called. So just that feeling that you're not quite remembering the things that you should be remembering and this very strange feeling that you've got sort of one pace of time going on inside of your head and another pace of time going on outside. So you can't quite mesh the the passing of time together, right? So you find yourself spacing out and. At the time I thought it's because I'm going through this grieving process, and that's what grieving does to you. It gives you this really isolation center dislocation, but actually it wasn't, it were actually neurological symptoms and it became noticeable basically because I started having seizures. I was supply teaching at the time. I brought out to a school, I was taking the class, and then I woke up with an ambulance and it's like, well, you've, you've had seizures. And then for that week I was in hospital just having successions. Seizures, one after the other. And that was the sort of turning point of realizing that, well, you know, this is, I've always been an anxious person. You know, I've, I've had migraines and I've had pains like nervous pain since university and it's actually, well, they were symptoms. That isn't just something that's normal. Quite often you say, Oh, that's just normal. That's just me. I'm stressed. But actually know these are all symptoms and you do have something and, and our seizures were sort of. Not, not so much the wake up call as, as, as the event that allowed me to actually start accessing help because it's like, well actually, you know, something is wrong. Let's have look at what's wrong. But it was a long journey to actually get a diagnosis and a long journey. To get to a place, you know, where I feel well enough that I actually have a life, I'm not just existed and getting to the next day, like I, I have a life and I enjoy it and I'm happy and I'm positive and know I'm able to acknowledge that I've got all these great things in my life, but more importantly, care about that. Cause sometimes you like, Oh, I've got all these great things in my life, but you can't have the emotional energy to care about them. And it's like, I've got all these great friends. I thought I have the emotional energy to care about what they're doing and to get back to the point where like, not only do I have these things, but I care about them, and I, I feel the ability to connect with them. That was a really, really long and hard, hard journey. I can

Melissa: 11:59

imagine I had, uh, a similar experience. Um, I've had a lot of different experiences in my life and some of them were a little bit frightening and they kind of all came to a head after we had an explosion in the town I live in, and that was quite a whole ordeal of the night that that explosion happened. The power went out and all of. Things began happening. Well then. A couple of weeks later, there was a loud noise in my house and I started lighting candles. I started doing all of those things that I did when the power went out, except the power didn't go out. There was a part of my brain that said, Everything is fine. The powers on. And another part of my brain that was reliving the events of that night. And fortunately, I was able to identify within myself that I was having symptoms of PTSD and was able to seek help. But when you have two different realities going on in your brain, it is unsettling to say the least, and it just leaves you in this

Kathryn: 13:13

state of It absolutely is. And that idea of, you know, two s. I think that's a, a really strong way of putting it. Cause you know, whatever it is that's causing your difficulties, whether it's, you know, whether it's a neurological condition, whether it's a mental health issue, whether it is, you know, something like you're experiencing grief or you're experiencing a traumatic incident in your life, it does feel like you are inhabiting a different reality. And quite often your brain can even present you with, you know, a different reality. And it feels like you're living in a very different place in a very different time. And, Finding a way to sort of click yourself back around and into sort of the reality that everybody else experiencing again, is, is a very, very difficult thing, and it's a hard one for other people to tell you how to do it. You've almost got to figure out for yourself how it is that you are gonna sort of turn and, and click yourself back in to what's happening. And if you can't do that, she said to at least be able to acknowledge to yourself. Well, it's okay. It's because this is happening and my brain's doing this, and this is how I'm gonna cope with this and this, this is how I'm gonna, you know, work on the fact and, and, and build on that knowledge that my, my brain's actually developed some self-awareness of what it is that I'm doing, which is a really strong thing and a really important stage to get to.

Melissa: 14:35

Yeah. There's a lot of hope there when you have a name for your experience and when you have hope that this doesn't have to be my reality going forward, that's a powerful moment. So, yeah. When you talk about your situation, when you got a diagnosis, what was that and how did that moving forward look like in your.

Kathryn: 15:00

I went through several different diagnos. So first off, because I had, um, seizures, that's probably some form of epilepsy, so let's try on epilepsy medication. And that was really her. I think that's the, the worst I being that is when it was sort of being treated as epilepsy. Cause I was having lots of. Spasms. Um, just constant sleeping, not really being able to wait night terrors. It was really, really difficult and we're like, Well, this isn't working, so let's try cheat it as, um, muscular re So I had a muscular res diagnosis for a while, uh, with, you know, lots of side classifications of, you know, it's, you've got elements of depression going on, so we're gonna put you in antidepressant. We're going to get you to see counselors because you're developing L C D and you know, some of. Little diagnoses like the depression and like the rcd, they are correct, but it would be looked at very, very separately. And I went through several different neurologists, several different, um, plus in our country the way it works is, you know, you go to your, to your local hospital and they were, deal with it, but I wasn't happy. So, um, I requested to go obviously by a different area and they were really helpful. They were, well it's, you've obviously got chronic migraines, so let's treat the chronic migraine. Then at least you'll be able to function because you'll be able to get outta bed and you'll be able. Think and you'll be able to enter buildings that have their lights on. So let's just deal with this. And then after that, again, I, I, I moved and my most recent neurologist has actually just looked at the whole lot and gone, Well, the reason that the diagnosis, it keeps changing is because of people looking at, you know, discreet things and actually it, What you have is all of those things and all of those things. Put together, make a functional neurological disorder. And what that means is that you have lots of discrete bits of different neurological problems and you can, It is a hard one to describe. So you can imagine that all these little discrete conditions and they come together and you can have. The predisposition to have this going on. But in moments of high anxiety in your life, it gets triggered and it becomes much worse. And then you start to develop other symptoms as well. So you quite often presents at birth, you know, when you are in your very early toddler, toddler stages, it quite presents in your late teens and it quite often presents in your sort of fifties and sixties. And really when you think about it, that is times when you're going through huge sort of mental changes and huge processing. Times in your life. So I mean, I seen the neuropsychologist at the moment and she's given me the best description, which is, your brain works absolutely fine. The wires are all there, but the wires aren't actually sending the signals to the right place. So you, there's nothing. You don't have something where things are damaged, you don't have bits missing, everything's there. It just doesn't work properly. And the more it doesn't work and the more stressed you get and the ill you get, the more it starts to spiral and get worse and worse and worse. And I really struggled with all those diagnoses for a while, mainly because all of them, they're not curable. These are all things where you're gonna be living with it for the rest of your life and being, being told. This is the best we can do is to manage it. And then what they're giving you to manage it doesn't work. That is extremely difficult, and I did still struggle with it some days, but not as much as I have in the past because I'm stable at the moment. I have my job, but you know, I have lots of things that I'm, I live independently, which I couldn't do before. So in a way, diagnosis really helped because it gave me an idea of a label, but it could also, it was also, yeah, a little bit limiting because it. Maybe focus on different bits and might think I'll cure this bit and I'll track hearing in this bit and I'll track hearing in this bit and I'll track. And you, you, you can't cure these things. You can only manage them. And importantly, you can only learn to manage your own relationship with them. And that's the most difficult thing is becoming okay with the person that you are and okay. With your relationship with the conditions that you

Melissa: 19:01

got. So what was your lowest point in all of this? I,

Kathryn: 19:13

My lowest point was definitely, it was when I was, I'd moved up to York, I'd finished ama that I, I'd gone back to doing. I had so much to be feeling positive about like getting my master's and like living independent and I just could not feel positive about it. I had a really, really bad migraine going down at days. And I just had this thought through my head that I, I cannot spend the rest of my life waking up and being on this level of pain. I just don't want it. I don't, The thought of, you know, decades of this being how I'm going to exist was just this absolutely crushing and overwhelming thoughts and I just could not get rid of it. And I just started taking my medication and I didn't stop taking it. And I'd taken about three or four packets worth. When I suddenly realized what I was doing and I'm like, Well, this was a really, It was almost like I was having this debate in my head that like, this is, I just wanna go to sleep. I just want all this to go away. But I also thought, wanna be doing this to, I started to get really panicked about my dad and like what he would think when he found out that I'd done this and that was enough to make me. Guilty enough to bring for an ambulance. So you fortunately turned up in town. I, I spent three or four days in hospital and it, it took me a while to actually admit to myself what I'd done. I was like, It's an accident. I told the hospital it was an accident. I'm like, I got confused and I forgot that I'd taken my medication. So I kept taking it and I kept forgetting and I kept taking it. And it probably took me about a year to actually say to myself like, You did that deliberately. You did that deliberately. You just wanted this not to be the situation that you're in, and you can't get out of this situation by getting better. So what, What's the other option? And you know that's, it's a really difficult thing to admit to yourself that you did because you don't like to think that you've been that selfish and you don't like to. I certainly didn't like to think that I'd given up that easily. You know, my mom had six weeks and she, she never gave up. She got up every day. She walked around her garden. She, you know, made sure that her school class was right and you know, that they understood what was happening. She was a scientist, so she looked up, she researched science journals with this, which she kept going until she literally couldn't stand up and heard me complaining and, you know, thinking that I can't cope. And that was really difficult as well, that I, I felt very, very guilty, but not being able to cope. Because what I have been given is time and time's, an extremely precious thing, and I was, I was throwing it away and it was, it was, it was guilt that made me bring an ambulance and it was guilt that made me, I meant what it was that I'd done, but it's, it's an uncomfortable thought process to work through.

Melissa: 22:04

Then you wrote your book,

Kathryn: 22:06

then you wrote your book. I did. I did. I wrote my book and. My box all about somebody who is going through a similar experience or she's suffering seizures. She's trapped inside her own mind and it's, it seems to be a different world to the world that's going on outside. She's completely in her own reality, and what she does is she, Writes her way out of that reality, she starts to keep a journal, and in her journal she starts to control her day and then control what she's doing and then control the universe that's inside her head. And she's trying to write her way back to reality. And that's what I was doing with my book. I was trying to take the starting point of this blank page and write my way out. Basically the confusion in my own brain. I was trying to basically write my disease outta myself. It's such a hard thing to explain and it's such a hard place to be in and I can't get out of it. But the character in the books, you can. So what I was trying to do is show people what that journey's like as you are trying to make your way out and trying to make your way onwards and trying to make your way. Back to the people that love you, and that's what she's trying to do in the book. She's trying to get back to her partner Stevie. She's trying to get back to her dad. She's trying to get back to the world. She's just not always doing very well at it. So when you look at the book, it's um, Got one side, which is even the character side, and she's writing in word pictures. She's, you know, she started off with a black page. She's putting words on it. She's making them into word pictures. The word pictures become sentences, and she's just basically trying to create a narrative. And that's really what it's like when you've had a seizure. It's like you've got a completely black page and you are trying, Put your thoughts back together and, and I've spoken to another friend who's had seizures and it's like everything's gone gobbly and you're trying to rearrange everything and put everything back together. And that's what she's doing on one side and on the other side of the page, on the right hand side, we're following the story of her family as they're trying to do the same thing. They're trying to make sense of, you know, what's happened to this person and how it's affected their cause. Of course, while we're struggling, our family and the people that lovers are struggling around us cuz they're dealing. With the fact that you've lost a huge part of yourself and it, it's affecting them as well. So I, I wanted to show that, you know, when something happens to you, it happens to the people around you and everybody's trying to do the same thing, but we're just not always connecting. So it's really a book about people. Trying to connect back together. And obviously as they work through the book, hopefully they're doing that. And you know, the stories are getting more and more to a point where they can come back into one story and everyone's back, you know, in, in the place where they're, they're feeling all right about themselves.

Melissa: 24:55

Have you made your way back in your life?

Kathryn: 25:01

I think, I think I, I have in that I no longer. I, I'd say at the start, I really grieve for the person that I was before that 24 year old. Cause she was confident and she was happy and she just absolutely a do tell. I like, I remember I went to a job interview once and they went, said, Why do you get outta bed in the morning? And I said, Well, why wouldn't you? And I, I, I, I felt so much grief and so much to ask for that. I spent so long trying to replicate her, trying to be her, and she was just gone and I felt better once I realized that she's not gonna, that that is something to leave, just leave her. But there are bits of her that you can carry forward and it's so my mom carrying her floor, carrying my family forward. You know, that urge to be independent. I love of writing they, these, the, the really important things. They stick with you and you'll find that you absolutely don't want to let them go and you will struggle on for them. So, you know, I said my, my dad is taking absolutely brilliant care of him. Some days I, you know, I absolutely struggle on for him. I'm like, I'm not gonna drop my dad. He's not going to be one of those things, you know, that I just leave in this place. But other things, absolutely. I can leave. Let's just, let's just move on. So, In writing the book, I, I really did come to realize what was important for me. It wasn't just about what was important for the characters, it's what was important for me. And, you know, I'm in a place where, you know, I, I feel loved, I feel happy, I feel safe. And, you know, that's the place where we all want to end up. And yeah, I, I think I definitely have, and it's a place where I don't wanna sit still. I wanna carry on moving forward, and I have the energy to move forward. And that's a fantastic feeling as.

Melissa: 26:53

what would you say to someone who is experiencing the fugue right now who doesn't, hasn't come through their healing yet, that's still feeling the effects of those different realities in their minds? What would you say to them to encourage them in their moments for them to

Kathryn: 27:13

recruit? It's a, it's a difficult question because when you are in those moments, you absolutely don't care what anybody else thinks. And when people try and give you advice, it can be very, Oh, that's not how I feel. That doesn't, Well, it's very, you've lost that sense of connection. So all I can say to them, you know, is there's, there's the opportunity for it to get better. And all you can do is keep going, but check what direction you're going in cause. For a while, I was absolutely plowing onwards, and I was plowing out, I'm gonna do this, I'm gonna do this, and I'm gonna get well, and I'm gonna do this and I'm gonna see this person and they're gonna help me and then I'm gonna do this. And one of the most useful things I ever said to me was the psychologist was like, Why are you digging downwards? Cause you're putting all this energy into this idea that you are gonna be well, and you are gonna do this, and your life is gonna be this. And all you're doing is digging downwards in a hole. And it's getting deeper and deeper and deeper. And that's why some days you just feel like you can't get. And so stop digging downwards and let go of the things that you just can't carry. And it's, it's okay to let them go. Let 'em go. Leave them in that hall, have a look around and decide what am I gonna do instead? And it's all right to do something and say, It's all right to be the person that you become. I'm a very different person. Well, my friends would dispute that. I think I'm a slightly different person. I'm an edited version of the person that I was before, but it's, it's okay to edit. You can't take it all with you. You can't carry it all. You absolutely need to leave some of those things sleeping, and you absolutely need to wake some of those things up and keep going, and that's okay. And it's your choice, but you take with you, it's absolutely your choice. What you carry with you, It's your energy, it's your life, and you can always go back to stuff later. Like it's, it's not going anywhere. It's, it's all there. Somewhere. So yeah, just keep going, but try to make a decision about where you're going and why. And even though guilt's helpful, don't, don't feel guilty all the time, let that go as well. Cause it's, as I say, guilt help me sometimes, but sometimes all it does is is drag you backwards, like let go of that as well and leave that not helpful.

Melissa: 29:36

And Catherine, where can we find this beautiful book?

Kathryn: 29:41

Beautiful. Thank you. Well, um, my publishers are atmosphere Press, who in our An American Independence, so thank you very much. That's, that's an excellent spot from them. I have a website, which is Catherine London, the author. So I'm Catherine, k a t h r y n. Nd Catherine the author.co.uk. So you can look there, you can look on Atmosphere Press, who as I said are the publishers. You can look on Amazon, Barn, Noble, Waterstones. Basically any major online retailer will be able to oh, go to your local bookstore and request it. It's available for other, um, whilst if they're, um, purchasing options. And you know, if you go on Ask, it helps create a little bit of a demand. And hopefully I give the book a read. It's, it's my journey. It doesn't mean it's your journey, but maybe we will help and give you a, a few signposts and a few flag posts for how to get to it is where you need to go past. I think we all need to be going somewhere. We can stand still for a bit, but then we, we all need to be going somewhere.

Melissa: 30:44

I couldn't agree more. And all of those links will be in the Shell Show notes. So if you're listening to this and you didn't catch all of that information, not to worry, the links are there for you and you can just tap on it and have that book in no time. Catherine, thank you so much for sharing your story with this and for writing this book. It's gonna be amazing. I can't wait to read it and I know it's gonna be inspiring. Because I don't wanna sit still either.

Kathryn: 31:16

thank you very much for having me. And you know, thank, thank you for listening and tearing me out. It's so important to be heard. So the active listening is such an important one. And you can do it for me. You can do it maybe for somebody who's who you know at the moment who just needs listening to the active listening is hugely powerful. So let's go out there and, and let's listen. All right. Thank you Catherine. Bye-bye. Thank you.