Transcript #28 Kitty’s Story: A Change in Perspective
I recorded this conversation with Kitty a few months ago on the Isle of Wight. Kitty's story is fascinating. After spending 31 years working as a mental health nurse for the NHS, after clinically dying due to medical negligence she found herself on the other side of the mental health services, giving her a unique perspective of both sides - the role of the mental health professional and that of the service user.
Kitty's story revolves around depression, anxiety, PTSD and the road to rediscovering herself and using her second chance at life to make the difference she wants to see in the world.
Listen to the podcast of our conversation here
Kitty: Mental health means to me not just your mental health or your physical health. If you have to separate it that is fair enough, but I don't like to separate it because I see your health and your wellbeing as being one thing. Without mental health or physical health you wellbeing won't be as it should be. Your wellbeing is really important to enable you to stay alive. It really is. So many people forget about wellbeing. So many people stigmatise mental health.
I do wonder if it is because it is something they can't see. It's not like a broken leg or a split on your arm, or a patch on your eye. But it does affect you as a person if you are not treated like a person. Being treated like a person is very important because if you are not treated like a person then you don't feel like you have a purpose.
My own experiences, that of being a highly sensitive person, although I never really knew that until 3 years ago. Back in the 80s I did my general nurse training and then went off and did this wonderful course on elderly care and then I realised without much mental health understanding really. I needed broaden my education so I went off to be a mental health nurse. I did that in total for 31 years, which is rather a long time!
I always worked with the person as a whole person. Never as a broken leg or a mental health issue or something. Until 3 years ago when I had a major life change, in that I died through medical negligence after an operation, and started having mental health problems myself.
I was shocked because I never recognised it, and I was a bit miffed that I hadn't recognised it to be fair. I ended up with depression, anxiety and PTSD. It annoyed me as a person that I never recognised how ill I was, but thinking about it what I had done is distance myself away from unwellness, because I'd become so unwell physically, and focused on getting well and walking physically, that I had totally neglected my mental health. Or neglected how I felt at the time.
Marcus: What do you mean when you say you died? Do you mean literally?
Kitty: I did die on the table. That has given me a very odd view of the world, in that seeing it from a mental health nurse perspective, and a general nurse, and a mental health service user I truly understand how people feel. Although I've endeavoured over the years not to make people feel like that, being on the other side of the fence I can actually see how people can be stigmatised. It did result in me needing to leave work because of my PTSD around hospitals.
So I don't do hospitals or doctors or anything medical like that now. Which is interesting, because it's meant that I've retired 13 years early. What it does mean now is that I can focus on helping other people to do the best that they can with their abilities, either physically or mentally, that they have got. Enable them to, I hate to use the word, but optimise.
So say that someone has a particularly anxiety provoking moment about going to a particular place, like I do that, there are certain parts of the Isle of Wight that I can't go to. I can't drive there let alone go there, it's about looking for alternative ways to do stuff. So for me, if I want to go to Cowes, I have to go either via the prison, or I have to drive right the way into the countryside and along the coast and come in that way, which to some people that don't understand what anxiety, mental health issues or PTSD specifically do... it takes you back to that 'ping' moment and you just freeze. There is nothing anyone can do or say, you just need to work through it in your own mind and come up with some way of not moving it, but being able to move yourself. You need to say, 'Today I am going to go to Cowes and I am going to go via, say, New Town. So be it. I might stop for tea and cake on the way. I'm not going to beat myself up for the fact that I can't go the short way and use less petrol'. But that's just the way life is. As a nurse myself, I always thought that I was equipped to keep well, but obviously the events of nearly 3 years ago pushed me over the edge. I dont think I'll ever go back to being completely well. I just do the best with what I have. If I don't feel well on the day I'll amend what I'm doing to that. I don't put myself under any pressure... well, I still do because that's innate in being human isn't it... but I try not to put myself under pressure and I try to put myself in a place where I know it will make me feel alright. I do a lot of needle felting now, and all the things that I wanted to do but never had the time.
I do a lot of wondering about. I always did do a bit but not much. Like today: a flask of coffee, cake, strawberries, napkins, cups, go. I don't know where I'm going, I'll maybe do a bit of shopping on the way back if I see some nice vegetables or plants on the way back. Life has changed but it is still life.
But back in 2016, I did want to kill myself. That was at the point when I was in disbelief that I had mental health issues. I ignored it and kept on going. That was my way, at the time, of dealing with all the shit that was going on. I couldn't do my job. I was going to be dismissed and I fought against it. Then one day I sat in my office and thought, 'I might as well be dead'.
I spoke to my colleague who I shared my office with and we sat there for about 2 hours. I decided that I better get some help before I actually did go and kill myself. The help that I did get was piecemeal. In my view, it was not helpful at all and if I hadn't have been so well supported by a couple of people I wouldn't be here. There are still places on the island that I can't drive myself to, because that is where I was going to go off the cliff.
I can come here, but there are certain places on the island that I guess are notorious for that kind of thing and I can't go there and I don't suppose I ever will. It's a bit like Beachy Head I suppose. I used to live there as well, but that was in the days before I was unwell.
It's quite interesting, because people never saw me as having an issue. The people I worked with, so when they actually found out they were quite shocked. They thought that I was not the "sort of person to do that sort of thing". I think it gave them a wake up call. I think it made them realise, as it did me, that we have to do the best that we can and not get so beaten up by the 'do this by Tuesday. Have this in place by 3.15pm', the focus on time and technology and that thought of thing.
Now I avoid technology. I stay outside. The only downside of that I guess is that I know myself, if I'm slipping down the pole a bit, and I start not wanting to talk to people, I start isolating myself. If I don't like the telly and I can't read the paper I know there is something going on and I attach myself to a couple of people who will bring me out of it. Sometimes that involves sitting around a table with a couple of people, eating cake, drinking tea and swearing. Or occupying myself and finding a purpose, because after 31 years as a nurse, 30 of those being in the NHS and one working for a charity, you suddenly lose your purpose. You don't have a purpose anymore. Your purpose was getting up, looking after people, going home, doing your washing and going to bed. But you don't have that anymore so what do you actually do. And that is very hard, because you don't know what to do with yourself. You don't know what to do at all.
That's when I realised that perhaps I should start doing other stuff. As my physical health has improved, I'm doing things that I never thought I'd ever do. I'm still continuing with nature things. I'm still doing the things that I'd never had the time to do, like properly grow plants, sell vegetables, all sorts of things like that that I never thought I would do. Make my own clothes. Make my own jam. Be as independent as possible.
Part of that is about avoiding people as I can't do big groups now. Which I found quite bizarre, as I've spent my whole career in groups. Now I don't. I spend my time in small groups or with one or two people. I think as well, unless people have had some sort of similar experience themselves, or been very close to someone who has got issues, don't truly understand. That's why I think people that have had mental health issues are better placed to care for and work with people who have issues.
I never thought of it like that before and that is very sad because I spent a lot of years looking after people in community rehab, the people being settled into the community after really long times spent in hospital, and that was about integrating back into society as well. I guess in a way, I am doing my own rehab. My rehab is getting out there and just doing, but it has made me a lot more cynical. It's made me have a complete distrust of anything medical and it's also given me a inability to take things at face value. I always now want to research stuff before I do anything. That can be seen as a bit annoying to some people.
For example, just before I was ill I was involved in a rather abusive relationship and I had to escape. I was living on the mainland at the time because I'd stupidly moved over there for a couple of years. When I was on this course, I met this lady and man who were running the course. I truly enjoyed it but it was a very hands on look into yourself course, and I though 'ugh, I'm not doing that'. Then I thought, 'Oh bugger it. Just do it'. So I went off and I did it and I became very good friends with these people. The long and the short of it is that they asked me if I wanted to be a presenter of a radio show. I though, 'I can't do that. I don't like people'. Well, I do like people, I'm just not people-y at all now. But they said, 'Just give it a go'. I think they said to me that they saw my potential in doing that. I think them having faith in me was really great, because I'd lost faith in myself to be fair.
Actually finding someone who had faith in me to do something important, rather than, 'Can you get me a bag of apples on your way past the shop', giving me something with purpose. I started off doing Saturdays. They were very patient. They knew about my anxiety issues. They knew about the stuff in my life and they also knew that I wasn't really a people person. Doing the radio show, which I've been doing for 4 weeks, which I know isn't long, but basically they saw a talent. They helped me out of the place that I was, which wasn't a good place, back in November last week. Now I have my own show on a Thursday. That show, I'm working with a lady that has her own mental health issue. We aren't put together because we both have mental health issues, but because we were both available on Thursdays, and we work really well together. She is only a youngster compared to me but it's enable both of us to find our purpose. It's enabled us to learn new skills. It's enabled me to get out of my shell and do other stuff. Last week I did two outdoor broadcasts. They were totally unplanned. The first was at a festival called 'One Life Festival'. I thought, 'Argh, people... groups... this is something I can't do'. But I went off with my telephone, stood in the middle of the field. It was a festival for adults with learning disabilities and adults who had other sort of issues in relation to disabilities and for people who were neurodiverse in someway, and I had a wail of a time.
I met people, I chatted to people. I did 12 interviews in one day, all with my mobile phone and uploaded it. Then when I got back to the station the next day put a lot of them on air and thought, 'Wow, I've actually done something that I never thought that I could do'.
I've been able to work the desk. The technology doesn't frighten me now. It's taken me since November last year, mind you.
The people [at the festival] accepted me for who I was. They accepted the fact that we were all different. There was no judgement. It was just so nice. The most amazing privilege. It was a privilege to be able to understand that I could do these things again after what has happened.
The following day they asked if I would go to an education day for children and I thought, 'Oh, children!'. 350 of them. It was an awareness day to introduce children to rural studies and rural things in general. Where milk comes from, that sort of thing.
That again, because it was surrounded by children it was non-judgemental, it was happy, they were incredibly well behaved. I got a ride in the back of a trailer. I did tonnes of interviews again, many of which went on air that afternoon.
I felt particularly chaotic in myself when I got back and my friend I was doing the show with was rather chaotic that week too, so we had rather a chaotic show, but it was fun. Nobody died. Everybody was happy and we didn't make any huge mistakes or get told off.
That has given me a purpose, but I wouldn't tell the radio station, I actually prefer doing the outdoor broadcast. I think it fits with how I am and the need to be free and not constrained. I think that being alive now is my second chance at life. Not only is it my second chance at life but it is my time to do something and to make a difference.
Our radio show is about enabling people to do the best they can with what they have got and to help others. Help others to help yourself. That's the way we have done it, and in that way we are using it as an enabler, not just for us, but for others who think 'I'd like to do something, but I can't. I'm constrained. I've got pieces missing of my body, or I don't have all my neurons in the right place'. The radio station I work for on the island is a very small one. It is a community radio station that went FM last year. They are so enabling to so many people in so many ways. They acknowledge diversity, and that everyone is different and has different needs. They run a course for people who ordinarily might not get on the radio or have those opportunities, or people that have learning disabilities or neurodiversity for example.
That is quite a joy, because after spending 31 years with the NHS as health professional, and leaving it and losing it... my brain still thinks I lost it... my career. But what I have to think about is that my career isn’t over, it's just in a different place. Life goes on and it is getting better.
It's certainly a weird one being a mental health professional and then having mental health issues yourself. It enables you to see both sides of the coin, because believe me, even though I've been trained for donkey's years, they don't teach you that bit. They can't teach you it. You have to experience it yourself. You can't learn it from a book.
Marcus: I guess one of my worries when I first started this was around my experience, the fact that I had no qualifications in terms of medical things, and that's before I even get onto the fact that I had no idea how to record things. I had anxiety around communicating using email and phones. But then I guess I realised that my qualification in the 'mental health thing' was that I had been through these painful experiences with depression and anxiety. And I still do to a degree, but I have learned to be able to see them for what they are and distance myself a bit from that. I think, I could have been a mental health professional, but then this wouldn't be this. What was it you said, 'Help yourself by helping others'. It's me trying understand and explore my own experiences with whatever this term 'mental health' means. I find that being able to share my story and hear other people's stories, and most importantly, I think, provide a space for anyone to be able to share their story, that feels good. I feel that I came through that worry about not being a professional, and realised that unfortunately I am a professional because of experience.
Kitty: It's strange. I tend to distance myself from being a health professional now. In fact, I don't have an acting registered number now. That itself is a loss, because it takes 6 years of training and all the other training courses over the years, and that is an awful long time. Then you think I'm not going to do that anymore and you are left with a gap. Thinking, 'What can I do with that gap?' then you think actually, 'Is there really a gap?'. Then you think, 'Well, what am I going to do instead?" and then come up with some sort of creative way of thinking about it, rather than thinking, 'I need to apply for a job at the NHS because that is what I have always done'. Having that freedom is something I've never experienced before and I love it. It has its pitfalls, from a money perspective. Retiring is something I never thought I'd do. I thought I'd drop dead at my desk. When I look at my colleagues now and how they are, they are all going to end up burnt out. You shouldn't have to do that. It makes me realise how much I pushed myself and looked after others and ignored myself. I'll never do that again, ever. It's really important. Once you neglect yourself, how can you help others.
I was thinking about this the other day. If you are on an aeroplane, when the oxygen masks come down, you should look after yourself first and then someone else. That wouldn't occur to me. I'd have done it the other way around and probably died in the process. But now, after the journey that I have had in the last 3-4years has made me realise that if you can't look after yourself then you can't look after anybody else, and that is what makes me want to do stuff.
Now that I'm a bit more physically well I can help out with Nature Therapy CIC. I did the Wolf Medicine course the other week. That was the most profound thing that I've ever done. It really took me to places that I'd never been. Physically, mentally, metaphysically, whatever way you want to look at it. It took me to some very odd places, but it's enabled me to understand that we are part of a bigger group, not just humans, but part of a bigger animal race on the earth. I did the Nature Therapy suitcase training and that was brilliant.
Marcus: What is the suitcase training?
Kitty: That is looking after people with dementia and taking forward a suitcase of items that represent all of your 5 senses and working with people to enable their senses when they have got dementia, because when you have dementia, whatever sort it is, it effects your senses big time. And your ability to recognise and understand stuff.
So for example, if you have a lot of people in a home, all the chairs facing into the centre, never going out, an inhuman existence of get up, sit in your chair, fed your food, go to bed, get up, sit in your chair... it's about taking those people outside and enabling them to feel the air, to sniff the flowers, touch stuff, if they still have sight, to be able to see things.
I didn't realise until that weekend that we actually have 21 senses, not just 5. Kim, who leads the course, said, some cultures only have 2 senses, the past and the present. It just so happens that in our culture we have 5. But when you are looking at the list of the 21 thinking, 'Oh my, I never thought of that'. But when you look at them from a wider perspective they are senses. Maybe subsenses in some ways, but they are actually senses that you use everyday and take for granted. For example, if you suddenly lost your sense of hearing, your inability to hear the music would be a difficulty so that's just horrible to me. But when I think of it in relation to my own illness, I came to the point of sort of avoiding stuff by saying, 'Okay, I can't that in the traditional way, but what other way can I do it?' and going sort of into nurse mode, and thinking about problem solving. So may be just going to point A, doing points B,C and D before you get to A. I now see having moved along on my journey a bit, I think it is quite profound and it makes me feel, not in an awful way, that everyone should have an experience to make them look at things in a different way than they might have done.
If you go to London for example, and you see all these people running around and you are running around, you are earning money, you are spending money, you are going home and you are doing bugger all, apart from going to work... I've done that. Then I think to myself, 'Why did I do that? What on earth made me do that?' Then I realise that I did it because everyone is doing it. So I see London now like an ants nest. When I stood on a large bridge and I just stood and watched people and they were like ants and they were just skimming about, nobody had any thought for anybody else. I know ants aren't actually like that. It made me think about society. People now don't know their neighbours. Their sense of community has gone down the pan. The sense of community has gone. The sense of extended family has gone. The sense of looking after your grandparents in the same house. That sort of stuff. When I was a kid that sort of thing happened. When I was a child we were out all the time, we were never in. I come from the Yorkshire Moors. You'd go on you bike all day. You might be doing potato picking, or strawberry picking, you might help collect eggs, you could even be helping to clean Mrs Smith's windows for a piece of cake and a cup of tea. Kids now don't have the freedom that I had. They are glued to their technology. Part of me thinks, what happens if one day that technology is switched off. How would they manage? And do they see society from a young adults perspective. And that made me think, from a mental health perspective and wellbeing perspective', how does that change in society affect the youngsters that are coming through now.
For example, for adults of a certain age... well, you could be any age to get dementia... but adults now would have some sort of experience, some sort of levelling experience where they could say, 'Oh that is a Red Campion, or that is a veg plant, or that is a Blue Tit bird'. But youngsters, unless they are brought up in that environment will never see those things. I think that is sad.
Marcus: We were talking at the weekend, at a retreat I was helping to run for people working in the environmental sector, things like the fact that they have taken out words like 'kingfisher' out of the dictionary, because they don't feel it is relevant today, but then they add a new word like, 'Twitter'. I'm not sure if that is true, but if it is, they are taking out a real bird and replacing it with a pretend one.
Kitty: I don't know if you remember way back, when DAB radio first started. I got into it at the time, because where I lived radio reception was so bad. They had this great radio station called Birdsong- and all they did all day was play birdsong. That was amazing. But then they took it offline, and you can only get it on CD or MPS.
Marcus: I listen to Spotify quite a lot, and I often listen to playlists that are of, for example, Sounds of the Forest, or sometimes I go through periods where I can't really sleep and I put on sounds of rain in the rainforest and it's really nice. But I guess it is weird having to use technology to listen to nature.
Kitty: I guess it depends where you are really.
Marcus: Yes, having said that I was listening to that while staying on a farm, surrounded by nature. But I guess the alternative is to go and sleep outside
Kitty: And you might get eaten alive.
Marcus: This year I've spent so much time outside. I grew up in the countryside, then spent a lot of time trying to escape the countryside, not realising that it was important. I guess over the last few years I've realised how important it is. This year, I've spent, probably everyday, at some point at least, been out in a field walking and it changes everything. I think it started off as something I felt like I needed to do every now and then to escape reality. Then I realised it shouldn't be to escape reality, it is reality.