48-« I felt lost. I felt scared . I felt I had to be the hero” ...(Serie Introspección), with Simona Stankovska

All right, this is the first time I'm actually recording a podcast in English. It's been a wonderful moment. I have just talked to Simona Stakowska, who's the founder of the Cavernoma Society. All these next episodes will be addressing Rare conditions, issues. You can hear the music. There are people walking by me with music on their body, inserted on their body actually. That's very funny. And so this is about raising awareness, talking about rare conditions, and specifically conditions that medicine so far hasn't been able to cure. And I'm very, very happy that Simona has accepted to talk to me, and she's the first of a large series of episodes in English. Thanks a lot, Simona, for your testimony.

Thank you.

El podcast Just in Time porque necesitamos salir, mantenernos abiertos al movimiento, a la reflexión, caminar, observar, reflexionar para empezar algo nuevo.

Hello.

Hi, Simona.

Hi, Mel! I'm so sorry. Hi!

Don't worry, it's part of the fun, you know. This podcast, the podcast Just in Time, was created actually for that, you know, so that we start— it's a pandemic podcast. The idea is to get out and walk and experiment and be really, you know, fluid about everything and just share. So that's These technical things happen, and I've just discovered actually that the Mexican network is really, really good. I didn't know. I knew it was one of the most expensive, but I didn't know it was one of the best.

Well, at least, at least you know you're paying for good quality service.

Totally. Yes. So, Simona, so, so nice to have you here. I am so glad we've connected. Um, yesterday was the first podcast I I published on my own condition. I never talked about it like that. So it was in Spanish and French. I sent it to you, and I'm sure you— maybe you can understand a bit in French or a bit in Spanish.

I try to, but I have to say I'm not fluent in either of those. I did learn when I was at school, but that's about how much my French stretches to.

Well, it doesn't matter. Basically, I was saying that this, there was a rare condition called cavernoma, and I was telling a bit about my story. But what we would like to hear today, and first of all, is your story. If you could introduce yourself, Simona, as you wish to introduce yourself, and just tell us a bit about how and why we connected and what we're talking about today.

Amazing, thank you so much. Well, thank you so much for having me, Mel. I really appreciate it, and it's a Really lovely to connect with you. Obviously, I would have loved it to have been, you know, on nicer circumstances because, like you said, we connected because of this condition that we both have. But my name is Simona and I'm the founder of a UK charity called the Cavernoma Society. A cavernoma, which you probably, most of you have never heard of, and I'm not surprised because it's quite a rare condition, as Mel says. A cavernoma is a lesion that's typically found in the brain or the spine, but it can be found in other parts of the body such as the liver. However, we as a charity tend to support people with brain and spine cavernomas. And basically, they're made up of abnormal blood vessels in the brain or the spine, and these blood vessels have very thin walls. They start to bleed, and when they bleed, they can cause strokes, seizures, and other neurological deficits. And, you know, they're described as— doctors describe them as not being life-threatening, but we have seen so many members who have had their lives turned upside down overnight as a result of this condition.

Totally.

And the reason that I started the charity is because I myself have the condition, and that is my experience as well. You know, I was 27 years old, I was driving along the motorway, I was fit, healthy. I mean, I'd had a few migraines, I'd experienced a few headaches, and was feeling a bit under the weather that day. But what happened, you know, is like something out of a movie. I wasn't expecting— and I basically had a stroke on the motorway. I passed out at the wheel of my car, and about a week later, I was diagnosed with this thing called a cavernoma on my brain. And the doctors over here I mean, the hospital that I was in weren't very good at explaining what a cavernoma was. So they basically said to me, you're gonna have to have brain surgery, almost like it's, you know, fixing a broken arm or something like that. I mean, the woman in the bed opposite me actually looked at me and she said, did they just tell you that you're gonna need brain surgery? You know, like it's some really simple thing that you have every day.

Wow.

And like, I was like, yeah, I mean, It was such a shock to absorb, you know, being told this. But also they couldn't tell me whether it was cancerous, whether I was, you know, whether it was dangerous, whether I was going to die. They couldn't really tell me very much. And this is, you know, I felt lost. I felt scared. I felt like I had to be the hero and had to be, you know, really brave for everyone else, for my family, for my friends. And then at the same time, I was petrified inside, like I had to hide how scared I was. So that's why I created the charity, because what I always say to people is I really don't want anybody else to have to feel this way. And I know that people will continue to feel this way until this condition is better known. And that's what we aim to do as a charity. We aim to do research. We aim to do as much as we possibly can to raise the profile of cavernoma so these doctors They learn from us because I truly believe that we are the experts of our condition. Because it's so fair. And I mean, I don't know how you feel, Mel, but I feel when they tell us that, you know, your headaches aren't related to this, or, you know, you're— we don't know why you're experiencing these symptoms, I feel really frustrated because we know why we're experiencing them. It's our body. We feel it every day.

Exactly. Well, in my case, Simona, I had never experienced anything till I was 43.

Gosh.

And suddenly one day I go to bed, I wake up and I see double. I have double vision. Never had anything before. So why is that? Maybe it's because I've been practicing yoga for 25 years now. But suddenly I went to, as you did, I went to the hospital. First of all, I was told that I had to put Botox in my eye, you know.

Wow!

Because my eye was paralyzed, basically one of the pairs of vision was paralyzed, were paralyzed. And after many, many details I will skip now, I knew I had a cavernoma. And the first doctor told me I shouldn't move. I should be walking like very, you know, Calmly and do not carry any weight, and I should live as an elder person, you know. And that was the first version. And the second one was, no, go and live your life, from another doctor, live your life as you've always lived it. We're going to give you a bit of cortisone and we'll see in 3 weeks. So I meditated like hell You know, a lot. I spent my 3 weeks meditating basically, and it went from 15 millimeters to 5. And yeah, and I've been great since then.

Okay.

So I agree with you. There is no information. Please tell me.

Oh no, no, sorry. I'm listening. That's just amazing. And I think this is why we're, you know, we've connected. And I truly believe that everyone comes into our lives for a reason and I do too. We were speaking earlier today about how yoga, meditation, and these alternative therapies can really change our lives. And I, you know, I, I can totally testify to that because I've used yoga for 3, 4 years now in my recovery, and it's changed my life. You know, it's changed the way I think, it's changed the strength in my body, my core strength, you know, everything. And it's really helped me to heal so much More so than taking tablets and, you know, going to the doctors, doing physio, whatever. I've managed my own recovery so much better with yoga and meditation.

Yes, exactly. I think I was lucky because the second doctor I saw was very, you know, he chose the conservative way. He said, let's just take a bit, very, very low levels of cortisone, which I never had taken in my life. And every day I was calling him saying, it's too high. I'm, I'm acting like if I was a drug addict and I was having, you know, the, the worst night of my life because I couldn't sleep. My, my— I had tachycardia because my body is very reactive to any substance. And he was very listening to me and lowering down the level of cortisol. And I think it's— I was lucky to have found this doctor in Mexico because so far he has never imposed The surgery upon me.

Yeah, no, that— and I think that's the way it should be because it's essentially your decision and it's your body. And I know for me, surgery is something that it, you know, it was a pretty difficult decision to make, but at that point in my life, I felt that the symptoms were really bad. You know, my symptoms outweighed the cons of surgery, and I wanted to take take the risk because I wanted a better quality of life because I couldn't walk. I couldn't, um, I couldn't— I had— I was having epileptic seizures and it, you know, it was just for me, my quality of life had suddenly gone down overnight at the age of 27. So I felt like I needed to do something. But everything—

Exactly.

And I think different parts of the brain as well. Yours is in the brainstem from what I understand, which is a very critical part of the brain. Whereas mine was in the frontal lobe, which did control my speech and my movement. But, you know, there was a lot more— there's a lot more gray matter in the frontal lobe. There's, you know, there's more room for error, whereas the brainstem is absolutely tiny. So even a 0.5 millimeter cavernoma is still pretty big for the brainstem.

Yes, exactly. Exactly, Simona. It's really case by case. But what happened to you then when the doctors told you you had to undergo surgery? Did you say yes? Did you wait? Did you— what did you do?

I waited. So I was— I had my stroke in July 2015, and I had my surgery in December 2015. So there was a good 5 months between the stroke and the surgery. And initially we decided to watch and wait to see, but I progressively got worse. I had more seizures, I had more bleeds, I felt worse and worse and worse. I had Terrible headaches. I was on a lot of medication to even be able to function properly, and eventually I decided in October to have the surgery. But I needed to have further testing in order for my surgeon to feel confident that he could remove the cavernoma without causing me further issues. And so I had a functional MRI scan, which if anybody's never heard of one, it's basically they get you to to look at pictures. They get you to to kind of, um, you, you don't actually speak the words, you say them in your head. So you, you say the words to yourself and they see which—

Mm-hmm.

They see which parts of your brain light up, which is very, very clever. So they can see on the scanner, you know, if the left side of your brain is lighting up, that means that you're using the left side of your brain to speak. Um, and so they did that test and it came back positive because it showed that I'm, I'm actually quite rare as well, apart from having a cavernoma as well. But I'm also even rarer because I'm left-handed, so my right— the right side of my brain should control my speech, but it doesn't. I've got my speech center on my left as well, so my brain is a bit unusual compared to what the doctors think. So, um, so that made it a lot safer to operate because otherwise I would have had to have my surgery awake, and also there would have been a massive chance that I would never be able to speak again. So, um, so that was quite scary because I work day-to-day job, apart from obviously I run the charity as a volunteer, um, the charity is actually run by volunteers. We're all run by— it's run by trustees. So my day job is actually in communication. I work in PR. So if I lost my speech, I wouldn't be able to do my job. So, um, which is, you know, which was really, really scary for me because, as I mean, a lot of us know, a lot of our identity comes from our careers and our jobs and you know, our relationships, the things that we can do, the sports that we can play. You know, we get a lot of self-esteem from these things, which, I mean, is not necessarily the right way of going about it, but it's human nature.

It is.

And I have to say, for me, my job was definitely a massive part of my life and, you know, my self-esteem. And so the fact that I might not have been able to do it was really, really frightening. But I was willing to take the risk because, like I said, Mel, I just, my quality of life was really terrible. I had moved back in with my mother because I couldn't live independently. And I've, you know, I'd lived independently from a very young age. So I'd almost lived 10 years independently from my mother, and I had to move back in with her. So it was, it was really frightening. And it was, it was a whole new experience trying to just get by. And I was very lucky that a lot of my friends came to visit. They bought me presents, You know, everyone was so caring and loving, but at the same time, I just didn't feel like me. I felt like I lost a part of me and I just wanted to get that back.

Yes. And how has it gotten for you, the recovery? Have you gotten back your life? Has your life changed totally? I mean, as far as I am concerned, my life totally changed 3 years ago, the vision of life. But how about you? What happened afterwards?

Well, I think that I always say to people, life is never going to be the same. And I'm not saying that to be pessimistic. I'm saying that to be realistic because I'm a very positive person. But I truly believe that once your cavernoma has become active and it's bled, things will never be the same again. Because first of all, you then live with the fear of another bleed because once it starts bleeding once, there's a chance of another bleed. You also have the, you know, all the symptoms that you might be left with. For example, you know, your eye, like you said, your eye was paralyzed. That's really frightening. You don't know what's going to happen. You don't know when it's going to improve. And I know myself, I'm a really impatient person. I want every— I want to know the answer. I want to know when something's going to get better. So the fact that I didn't have a clue when things would get better and if they would get better, that was really hard for me. And things have got better, but it's also a state of mind, I think. And I— what I've had to do is I've had to work really, really hard on acceptance. And that's been probably my biggest hurdle, because accepting that I'm not going to be the same and I'm a new person. Saying that, I remember my doctor saying to me, this new person doesn't have to be any worse than the old person. You create the person, right? You know, you choose who you want to be.

Yes.

And you choose what you want to do. And that's been my, you know, that's been a whole change of mindset for me because I've now decided that actually, you know, I make my life, I make my happiness. And so I choose instead of pushing myself to do things that I know I can no longer do. So there's things like I used to do rock climbing. I can't do rock climbing anymore because I've got a left-sided weakness on my arm and my leg. And so I just, I just can't do it. However, there are other sports and other hobbies that I've taken up that I can do and that I'm really good at. So it's, you know, there's been a change, but I can't say that it's a negative change because I've learned to do new things that I maybe never would have tried before. And, you know, I'm now doing more baking. You know, I really love baking cakes. stuff. I love sewing. I'm learning to play the guitar at the moment because it's really, really good for retraining my brain. I've done a bit of drumming. I've done— I'm trying to think of all the things that I've tried to do. There are certain sports that I still really struggle with. I mean, my— I have a personal trainer at the gym and he laughs at me when I can't do something because of my hand-eye coordination. You know, I still struggle with— if he says to me, you know, use your left arm and your right leg, I still struggle with that because my coordination is rubbish, but I'm working hard to improve it. And I think for me, even 5, 5 and a half years on, it's still a daily, um, you know, I see daily improvements. It's a daily challenge, and I just have to keep going. And I'm truly grateful, and I'm truly blessed to be alive, to be able to, um, you know, run the charity. And, and I'm constantly inspired, Mel, every day by people like yourself and our members that, you know, come to us and they share their story and they share the adversities that they faced and how they've overcome them. Because I think for me, the community gives me strength to see other people go through what I've been through or even worse, and to see them come through the other side and to see their attitudes, their positivity, um, you know, that the way that they, they've healed themselves, you know. I'm constantly Learning new ways of healing. There's, there's a guy called Steve Cairns that he, he's got this kind of movement rehab because he had a brainstem cavernoma and he lost his movement completely. And he's retrained himself to walk, whereas the doctors told him that he would be paralyzed for the rest of his life. And he didn't want to believe that, and he has retrained himself to walk. And I just think stuff like that is amazing, you know. Um, never believe Like, I guess never believe that there's a limit. You know, we push our own limits and we make— we set our own goals and our own targets.

Exactly. I think that's the main message. It's really breathtaking and it's totally what any person like you and I and all the community members experiment on a daily basis. It's really waking up and saying, thank you, I'm still alive.

Yeah, completely.

And I'm still working on it. And from this end, what I do is, you know, giving and offering the yoga and breathing and meditation, which is totally a present, actually a present I received in my life, and I decided to practice and To develop, but it's now from this point of view, it's really every day, every practice is offering this present to people, hoping they will, you know, receive it as a present and do some transformational work with it.

Yes, I know, I think it's amazing what you're doing. Honestly, it's brilliant. And all I can say is that, I mean, I can understand you must get so much out of it, but I think when it comes from the heart, everybody else gets much out of it as well. And it's yoga and meditation, like I said to you, has really helped my recovery. And I think obviously the fact that you teach it must, must have made a massive change for your recovery. I mean, I don't know, how are you feeling these days? I mean, I know that I— we talked earlier and you said you're working a lot, and, and I really admire you for that. But at the same time, I just want to say slow down, please slow down. Yes, life's too short.

Of course, but you know, it's not— the problem with me is that it's not really work because it's my passion. Psychoanalysis is my passion, yoga and meditation is a passion, and also teaching kids. So I always have to put some limits and remember that I have to rest.

Yeah.

So that's what I do. But the meditation part gives me that. If I meditate every day, which is what I do, I really feel very good doing all these things because it gives you so much energy.

Yes, definitely. And well, like you say, if it's not a job to you, then you're just doing what you enjoy. And I think that's the most important thing. And I mean, I can't relate to it in terms of my job. I mean, I love the job that I do, don't get me wrong. But my job is definitely to pay the bills and it's my security, but I love what I do with the charity. The charity definitely feels like a vocation to me, and that's why I enjoy giving the passion and my time to it.

That's wonderful. Now you talk about the charity, because I think it's amazing what you did, you know, going from the mess to the message, which is the bridging we need to do when we want to give service to people and really have a life full full of meaning. So you went from your mess, which is terrible, a terrible situation, I mean, the stroke you describe and what happened was really hard, from the mess to the message. And I would love to, you know, for you to share how it works. If people have a bleeding, if they go to you, do they have to be in the UK? Can it be from anywhere? What can we ask for if we want to, first of all, receive information and then maybe give something to the charity?

Oh, thank you. Well, we started off as a UK charity. We are still very small. Like I said, we're run by volunteers. However, we do have a very, very international membership base, and the main I would say the thing that we can offer on an international basis is our counseling service. So one of the things when I, like I said to you, when I went through my surgery and my experience is that I was very scared and I felt that I couldn't talk to anyone because I didn't want to worry my family and I didn't want to worry my friends. But at the same time, I needed to talk to someone because I was really scared and I didn't know what the future had in store. So what we've done with the charity is one of our core elements is the counseling. And so we have trained therapists who know about cavernoma, who've been trained on cavernoma, and that we, we have a really good therapy team. And our counseling service is free. So if anyone is struggling, if anyone feels that, you know, it's— they're newly diagnosed, they're scared, they don't know what to do, and they need someone to talk to, we're here.

That's amazing.

You know, we can either do that group sampling, or they can talk to me, they can talk to one of our other trustees, because our other trustees have all got experience of cavernoma in some way. A couple of them are carers of children with cavernoma. So, you know, every— all of us know enough about cavernoma, and we can be there to talk to you, or you can talk to the therapy team. We also offer things like In the UK here, we offer help with benefits. So when you get diagnosed, some people can't work, some people can't return to work, and they're scared because suddenly their income is lost. So we help them to get the money that— we help them to get money and support that they need so that they can actually concentrate on their condition and concentrate on getting better. We also help people to connect to like neurosurgeons and neurologists around the world that are experts in the condition, or at least know more about the condition than a typical neurologist or neurosurgeon, but it's because it varies from country to country. Um, I did a, I did a speech at a conference in Poland a couple of years ago, and I found that neurologists in different countries, uh, you know, for example, in Poland, they've got, um, neurologists are all very, uh, like a neurologist covers like every single different condition. There's no experts in certain conditions, uh, whereas in the UK we do have neurologists that will, you know, will maybe, um, deal with For example, strokes or ME or MS. You know, they have different specialisms. So yeah, so we help people to connect with those. We give you information. We, we, we can also speak to your friends and family. We can give your friends and family information on how they can support you. We offer online support groups for that kind of thing. We also offer online Zoom classes at the moment because of COVID So we've been doing yoga, we've been doing meditation, we've been doing, um, things like, uh, hypnosis and tapping to help people with things like, um, one of the conditions that you can suffer with is tinnitus, where you get the ringing in your ear.

Yes.

I don't know if you've got that, but I had it. And so we've been doing hypnosis for tinnitus. Um, and yeah, we, we basically, we try and offer as much. We do in the UK, we do yoga retreats. Our next one is on the 2nd of July this year, because like I said, things are reopening here in the UK, so we're allowed to finally go ahead. And it's just a 3-day retreat where we get together. We usually have about 10 couples, so we have 10 people with cavernoma, and they're allowed to bring a friend, a family member, or their partner. And we sit them down and we do yoga meditation to help them to manage their condition. And then we also do group counseling sessions to try and help their partner to understand their condition. And because it's equally important to have the right support around you when you're going through this, uh, you know, to have your friends and your family understand what you're going through and maybe what you, you can and can't do. Because I don't know about you, Mel, but, you know, for a long time I suffered with neurofatigue, which made me very, very, very tired, very grumpy, very snappy. And, you know, and I needed my family to understand that, so I couldn't just go out. Like I used to go out and, you know, and party or, you know, have late nights. I needed to get to bed early. I needed to nap during the day. I needed to really take care of my sleep patterns and my eating patterns, my, you know, what I drank. I needed to keep hydrated. So it's about learning these things, you know, learning how to look after ourselves because—

Totally. So important. Yeah, what you just said is so— I don't— I totally agree with that because you talked about the hero syndrome, right?

Yes, yeah.

Which is very common in, in generally women. We want to do everything and support everyone, and we want to support everyone before, before oneself, and that's just impossible with a cavernoma. And I also identify with you on the sleeping thing. Sometimes people think that you're trying, you know, to be a bit You're considering what they offer as not as interesting. It's not that, it's just that you know that you need to sleep and you need to wake up very early to meditate, and it's about your health and it's about basically surviving.

Yes, and self-care is so important, and it's definitely something that I've had to learn to be a bit more selfish and put myself first, because like you're saying, I've definitely got that hero syndrome. where I try and fix everybody else and help everybody else and make sure everybody else is safe, and then I forget about myself. So I'm really having to learn to push and put myself first and my needs first, because at the end of the day, what somebody said to me, um, last year, and it really, really struck a chord with me, is, well, if, if, if you weren't around, if you're, if you're too ill, then the charity won't exist. You know, we need you to be well. And for you to be setting the example to your members that you need to take self-care. And it's so true, you know, I can't be advocating self-care to people and then not looking after myself.

Exactly, that wouldn't be coherent and that wouldn't be legitimate either. So that's very important. I think what you're doing is amazing. I'm totally in. I'll be following you every part of the way. Simona, I think it's very courageous, amazing, and you're giving service like that. And I do believe, as you do, that there is no encounter that is just, you know, casual. I think we had to meet because what I've been discovering with the time, you know, 15 years psychoanalysis practice, 25 years yoga practice, is that it's all connected.

Yeah.

It's all connected. And with time, my practice as a psychoanalyst has changed. My practice as a yoga teacher has changed in order to give this help to people like me who've been suffering a brain condition, a rare condition, a grief, because, you know, this is about grief. You need to— we need to let go of many things. And as well, mental health. I really believe that the research will be developing a lot In the, in the next years.

For sure. And, and I would love to work with you on that, to, to develop some research on how yoga meditation can, can, you know, really help people, because I truly believe in it. And, and like you said, it's, you know, you, you have to grieve that old person. You have to let go, because otherwise we're living in the past. You know, if I look back and think what I was like when I was 27, I'm not the same person today. But actually, I'm really grateful that I'm not the same person because I've learned so much. And I think what this teaches us is how strong we are. The adversities that we face make us stronger, you know. It's that whole mentality of what doesn't kill you makes you stronger.

Totally. This is Nietzsche. Wonderful, beautiful, Simona. I'm so, so grateful to meet you, to have connected. I'm so grateful you're taking time, and thank you a lot. You know, I'm sure many people will react, and I, I think people need to know. We need to raise the voice Raise awareness and help find a cure at one point.

Definitely, definitely. That's what we're working on here in the UK. We're working really hard on it. We're speaking to several researchers, and I think a cure is going to be possible within the next maybe decade, hopefully. So fingers crossed. And if anyone wants to get involved, you know, if anyone has any ideas, please get in touch. We're always willing to listen and hear what people need from us. Because you know we're a member-led charity. We want to we want to be providing the services that people need from us, and that's amazing. So thank you so much for your time. I really appreciate it and for inviting me onto your podcast, and thanks to everyone for listening.

Oh, thanks a lot. A big abrazo, and we'll talk very very soon. I'm going to be one of your big supporters. Thanks a lot, Simona.

Take care.

Bye bye.

Good evening.

Bye bye.

Bye now. Bye now. Bye.

Este es el podcast Just in Time para que podamos intercambiar. Tenemos la página de Facebook, podemos también intercambiar con el correo electrónico y también en la app de Just in Time de Viñasa Yoga Just in Time en Wix. Puedes mandarnos tus mensajes, haz tus sugerencias, preguntas, comentarios para que te vayamos respondiendo. También está la posibilidad de dejar un mensaje vocal en el mismo podcast. Te podemos mandar el link para que nos dejes un mensaje vocal. Nos vemos pronto.