Hannah Derwent is a mum of two young children when she had to undergo brain surgery to manage a benign meningioma that was growing in her brain stem.
Hannah experienced intraoperative brain stem stroke while undergoing the craniotomy and woke to find herself with locked in syndrome.
7:41 Discovering a brain tumor
18:08 Locked in syndrome after brain tumor removal surgery
21:56 Delusions from meningioma removal
26:48 Why don’t we ask the expert
28:49 She can’t do anything
53:04 When will rehab end after brain surgery
57:05 Wisdom that you gain from horrendous experience
Wouldn’t you say stroke is the best thing that happened to me, I think that gaining of that wisdom is probably the best thing that happened to me. And I think that it can only happen through something dramatic, whatever that is, whether it be a stroke or something else and so
I don’t I really don’t like motherhood statements like oh, you know, this is for the best or, you know, people that love telling you this and you know, have never had anything in their life.
But I do like a much more nuanced conversation about the fact that there’s only certain wisdom that you gain from horrendous experience.
This is recovery after stroke with Bill Gasiamis, helping you go from where you are to where you’d rather be.
Bill Gasiamis from recoveryafterstroke.com. This is Episode 71. And my guest today is Hannah Derwent, Hannah is a mother of two young children and is living with an inoperable meningioma.
According to Web MD, a meningioma is a tumor that forms on membranes that cover the brain and spinal cord just inside the skull. Specifically, the tumor forms on three layers of membranes that are called meninges. These tumors are often slow growing, and as many as 90% are benign.
Now, just before we get started with the interview, I wanted to let you know about a free webinar that is available for you to download. If you go to recoveryafterstroke.com/webinar, and click the Download Now button, I will send it to you directly to your inbox.
The webinar was created for people on the road to recovery, and by watching it you will learn how to take action on your recovery now, how to build a vision for the future that will inspire you and what to do when you are faced with hard decisions about your path forward. You’ll also learn the importance of creating a supportive team around you and what people that the recovery journey should include.
As well as how recovery after stroke coaching can help speed up your healing. So don’t just be a stroke survivor, download this free webinar at recoveryafterstroke.com/webinar and become a stroke thriver.
Hannah , welcome to the podcast.
Thank you. .
Thank you for being here. And thank you for waking up early and jumping on making time for me.
Tell me a little bit about what happened to you.
Well, it’s curious why I’ve listened to your podcast a little bit. And I don’t have a stroke story.
Like other people, well, I do but it’s a very different story. So I was having. I found out I had a meningioma, which is a benign brain tumor
In my brain stem, which is the surgeons think you probably got the best tumor in the worse spot.
So if you’re going to get a brain tumor, you probably want to get a meningioma, but you don’t want to get in the brainstem.
Anyway, I had never had surgery. I’m not scientifically trained, I had no knowledge. So he said, Look, we can do surgery.
On reflection, he was telling me how massive it was and how risky it was. But, you know, I thought I was getting my wisdom teeth pulled out or something. I mean, I didn’t really think that hard about the gravity of it.
Anyway, so in may 2017, I had my craniotomy to debug my tumor, they call it so they don’t always, especially if it’s an tricky spot, these kind of tumors they don’t always aim for 100% resection they call it so getting 100% at. They aim for enough to make sure that so that you’re not symptomatic anymore. So I was basically starting to get symptoms I possibly had the tumor
30 years, which means I had my kids with it means I went to uni with a so they’re not dangerous as such until they start interfering with nose and the like. Anyway. So I have a 12 hour craniotomy.
Yeah, at the seven hour mark. I think what happened I’ve been told many times now I apologize if anyone is neuroscientifically trained, they can correct me. But what I understand is
that there are blood vessels that feed tumors co opted by tumors, and those can be sacrificed. So they can be, they just cauterize them and they cut them off basically, so that in effect, they’re cutting off the food supply to the tumor. But there are also blood vessels that go through the tumor to feed a part of the brain. And mine was the latter. So it was a vain draining away from the brainstem.
And so you can’t sacrifice it if you sacrifice it person dies. So Well, I think they don’t, I’m not sure. But anyway, so there were.
he was attempting to get more of the tumor but to get more he’d have to pick more of the tumor off the vein. And so he was taking it in tiny strands. The pathology reports that it was all in strands, tiny strands, he took it and
unbeknownst to him, it was too tightly connected to the blood vessel and the blood vessel came to. So it perforated the blood vessel. Now, what I understand in craniotomy is that people bleed quite often, but it doesn’t always cause a stroke. But it depends which blood vessel you get, and you can’t tell. So they only really knew when the neurophysicist who’s in the room said, we can’t detect anything on the rot.
I think that’s when they realize so what they have to do when it’s going through the tumor is they have to actually surgically seal it. It’s different than cauterizing it, so it’s still there but patched up.
You’ve gone through this 12 hour surgery you thought was like, going to be like getting your wisdom teeth pulled out maybe.
Cool before that, like, what were the symptoms you experiencing that led you to end up in the hospital?
I can think about this on reflection. So I was overseas for work in from 2012. And then I have my operation 2015. I think for the whole duration of that time overseas. I had chronic headaches. I lived on penadol I just thought everyone lived on penadol . I didn’t realize after I had my surgery. I was like, oh, people i live on penadol.
Penadol for people who don’t know is a just a painkiller, a very mild headache type painkiller.
Yeah, paracetamol. I had really bad vertigo so every time I lay down the room would spin out.
Which I kind of ignored because it didn’t affect me when I was standing and only affect me when I was lying down.
And actually it was a vertigo that got me so I started seeing a physio for the vertigo, and he I think he fancied himself as quite the expert, which he probably was. And after three treatments he said Hannah it should be getting better in someone your age.
Discovering a Brain Tumor
He said, I think you’ve got to explore this further. There’s something physiologically wrong
To which I said do you think of a tumor and he said, No, I don’t think you have a tumor.
So the vertigo, the fatigue. I mean, the headaches
I started to get. So in the brainstem is your auditory nerve your nerve balance your nerve your voice you know all these automatic functions I started to get really odd hearing my right ear my affected ear
but the thing about me right at the end like because I think you know the symptoms Come on very slow was the extreme fatigue like I was only 35 at the time I was working like two days I cut right back at work I thought I was dealing with some sort of autoimmune disease and so I cut right back at work i’d chain I was eating like
I was eating ridiculously because I take a lot gut paid as well which is very interesting in terms of the mind gut connection No one’s ever acknowledged that but miraculously since my tomb is gone. I don’t have gut paid
So but the feed take sorry, got me in the end. Just I was so tired. I could have had to get up and i thought.
What is wrong with me?
And you went to a neurologist?
Went to my GP actually changed GPs. So I was getting everything tested in 2016
except my brain. And then I changed GPs actually because I had to because I was hardly going to work and I needed someone closer to my house. And he didn’t pick up first time. He said, oh your Iron lives are probably low or something.
But he said to me, very critical, he said, if your worse come back, so I did. I went back a week later and I said, I feel worse and It really hurts when I bend over. And he said afterwards, They never tell you until afterwards, he said that was a trigger, because that indicates some sort of intracranial pressure.
And he said, I think we just need to maybe do an MRI.
And so he got it after two and I still see him because I trust him.
Yeah, and he referred me to a neurosurgeon.
Sometimes our story about what we’re experiencing can lead doctors down the wrong path. And we ended up going to, I went to a chiropractor, you went to a physio, chiropractor said
to me, whatever is happening in your, in your body and making your left side numb is not as a result of your back. That was the second time I saw him, because he said, the numbness in your foot in your leg is maybe something that’s coming on in your spine, maybe some inflammation due to some damage that you’ve caused,
because how to properly maintenance business, I was doing heavy lifting silly stuff like that. And then he goes, if you come back a second time, you know, we’ll check it out. If it gets worse, so I went back a second time and I couldn’t feel my entire left side.
And he immediately within a minute said you need to go and see a doctor, go straight to the hospital. And I ignored it and I said no i can’t do that I’m working tomorrow.
So when I tell that story some people get really upset that the chiropractor should have known better and chiropractor can’t pre treat everything etc. But I had a 10 year history with this chiropractor.
Good advice though I mean, that was I said looks like their experienced and they know when they see and the physio said to me this pain should be referring because I was getting headaches as well. I was saying for two things vertigo and headaches and this pain should be referring and he said the fact that it’s not referring up to your head at all means that there’s something else physiologically wrong.
He actually said, he said, Hannah, there is something wrong and he just haven’t found it. He was willing to draft to let it the doctor and he wanted me to push it. He said look, they’ve got a look further and not just tell you that you know, it’s all in your head.
That’s good that it ended up sort of being found the way that it was found. What’s interesting, though, is that you said that you didn’t think the vertigo when you were lying down was anything to be worried about because it just happened when you were lying there.
It was funny enough, because when I was working overseas so there’s an Australian GP that we see over there. It was 2015. I’d actually come back to Australia for my brother’s wedding, and I had shocking headaches and I had to CT scan, which didn’t show up anything, which is quite common when things are in the brainstem.
If this was at the front of my brain, it probably would have showed in the shade of a mess. Anyway, it showed up nothing. And then I went. Anyway, I went back to my job overseas and I went to see my GP for something. And she put me on the Examination Table. She was excellent. I really liked her and I said I just spin out
aphoristic it always happens. And she said to me, oh, I’d be worried about that if you hadn’t just had a CT scan it was clear wasn’t it? And I was like yeah, it was clear. And so we wrote on to the actual issue that I was there for.
Maybe other parts of the brain too, I don’t know. But the you know, MC Did, did they so different functions. So I think what she was actually probably looking for the GP that I saw, who was not my regular GP because I had such bad headaches. She was probably just looking for bleeding. All the remnant of a clot or something like,
You know, it’s interesting with CT scans and MRIs. It’s because I had a CT scan too that didn’t show the arterial venous malformation, and that was around 18 months before the actual bleed.
So they could have been a lot of preventative work done during that time. What I feel like the CT scan is I feel like it’s all technology, which..
Now if you or someone you know, has experienced a stroke, and in recovery, you’ll know what a scary and confusing time it can be. You’re likely to have a lot of questions going through your mind like how long will it take to recover? Will I actually recover? What things should I avoid in case I make matters worse, doctors will explain these things to you.
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They haven’t had the foresight to go, we’re not using this anymore because it’s all technology. And because the cost of MRI is is higher use at first and then they use an MRI but I figured I shouldn’t MRI use be the same as any technology when it comes out at the beginning. It’s expensive but the more and more people will use it. And the more it’s needed, the cheaper the cost comes.
But no apparently not. So this I think is really silly that we use antiquated diagnosis tools. And I don’t see that as being best practice. And I don’t understand how it continues to go down that path. Maybe I’m wrong. And I have a friend who’s a radiographer, and I’m going to ask him, because that’s the first time that’s entered into my mind to think about it like that, but it feels like they’re using a 1920s car and they’re expecting it to have air conditioning.
And I guess the problem is the brain conditions is sort of rare. So in some ways, you know, I mean, for us, it was our it’s our life so of course, it was crucial. But I guess they are weighing things up on a much more cutthroat kind of yeah, I didn’t I didn’t know the answer.
I don’t blame them. I just wonder whether or not what I’m saying is something that other people are saying other radiographers is saying or other people wanting the diagnosis are saying so doctors would be frustrated I imagined going all we did a CT scan Correct. We missed that. Now we’re going to do an MRI or Here we go. Now we found it and Geez, wouldn’t it have been better to do an MRI at the beginning?
My neurosurgeon was frustrated because I mean, who knows it might have made no difference. It was only 18 months but he said, you know, if this have been found earlier, we might have been able to avoid surgery and just, you know, do other methods, they do radiation and stuff. And you could have actually avoided this whole disaster. I mean, there might have been other side effects who knows but this actual side effect.
What did you wake up with? What deficits did you wake up with from surgery?
So it was messy. He, came out and said to my family Look, it was small by blood standards because she was there, but it will be messy because of where it was. And he said we’ll know in the next 24 hours. So I think it was fairly touch and go. I think for the I think generally for the first 24 hours after a bleed that I don’t really know someone will make it or not.
Locked In Syndrome after brain tumor removal surgery.
So because it’s the brainstem I woke up with I was locked in basically so I had no voice. I had no movement. My whole right side was paralyzed. I had no swallow. I couldn’t swallow so I was tubed for three months.
No voice no talking. No swallowing. No moving. Totally incontinent.
Thats a bit more dramatic than pulling a tooth.
Yes, it was pretty major. So I was locked in for probably, so I should say about waking up. I mean, I don’t really know. I mean, I’d be interested to hear because I had the bleed, but i also had a 12 hour craniotomy. So I think I understand that even if you don’t have a bleed you wake up from a craniotomy, very, you know, it takes a lot. It takes a while to come to,
Yeah it took me a couple of days to get back into the space into the room.
So I had, you know, both so I’m not sure. I woke up. I didn’t, it’s hard to explain, but I didn’t even know that I was me, if that makes sense, I had this vague feeling of the all I guess, but I was looking around like, I know that person, that’s my mom. I know that man. That’s my husband. What are they doing here? And what am I doing here? And why can’t I move? Like I just had no concept.
I reckon the concept of myself and the full understanding of what have happened took months. So I didn’t understand the connection between blood loss in the brain and also function And the role of getting back function which possibly was good because once I realized that I was myself, I never entertain the possibility of not recovering. Ever, ever. I never thought about it. And that wasn’t a conscious decision that was just like a
Yeah, like this will be a blip basically like, you know.
Yeah, so that’s, so this has been the process. I mean, I had some spontaneous nerve recovery like my voice come back spontaneously. My swallow to some extent, I did a bit but you know, my continents came back randomly. But the physical stuff has been and my eye doesn’t move my I’ve got sixth nerve palsy, which means that my left eye doesn’t move left. which creates double vision. So I can see I’ve learned a lot about the brain. Now I can see because I have my optical intact, but I my eyes don’t unify the image when they work together. Yeah. But your brain kind of. It’s not like you ever see perfect again, but your brain adjust to some extent. Yeah,
Other people have spoken to who are locked in on the podcast have said that it was terrifying because they woke up and immediately realized that how vulnerable they were, was that similar experience for you?
I think yes, the vulnerability but that came a bit later, I think at the very beginning the sheer terror off not really understanding what was happening. So understanding that’s the problem with being locked in because you have your full faculties You understand? But you can’t do anything. So when it comes to language, for example, like I never have it, I never had trouble constructing language.
Delusions from meningioma removal surgery
But I had trouble with the mechanics of making my voice kind of thing so. Like if you asked me if you put a whole lot of doctors in front of me and said, Were these people in ICU, I could tell you who was in ICU and who wasn’t. So I have full memory of who was there. I had was having a lot of delusions. I thought everyone was trying to kill me. So every time they tried to put a (inaudible) on me or something, I thought they’re trying to demean basically, I had this one doctor say, I think he was questioning why I was still in ICU towards the end. And he said, why she’s still here. And I thought she meant like, I’m someone.
The delusions lasted. Well, that was a couple of weeks. So I was not moved out of ICU for a couple of weeks. So it wasn’t until I moved out. I do remember it was really inappropriate. When I was put on to the neurosurgery Ward, I was put in with a man and he was 96. So he was pretty harmless, but he was,
You know, not full faculties there. So it was terrifying in some ways. And one day, he came around the cushion because he could walk. He did something he could walk, and I just got terrified. I was like, Oh my gosh, like if he tried to do anything, and I knew how long the nurses took to come they took forever. I you know, be luckily my husband was there so we just kind of shooed him away. And I think it was pretty harmless.
But still the thought the idea would it have been the same concern if it was a female?
No. So when I moved to the rehab board, they only put me in with females and that was fine.
what I think they should always do, no matter what especially, ridiculous if someone who’s locked in, you might have some thoughts if they’re feeling a little bit vulnerable, like, you know, I just think I’m
and I think too I think
that doctors are mostly men and men don’t really understand the level of vulnerability that females feel Anyway, let alone being locked in. I mean, you have a liberal vulnerability, even just walking down the street, even if you’re perfectly able, and then put on top of that, you know, being totally disabled it magnifies it.
Men, are a bit thick men can be a bit thick.
But I think the issue is that I think the biggest issue is that they don’t actually interview people like you later. That’s what the biggest issue is. So nobody says, Why don’t we ask him a few questions about their experience.
I actually find it really bizarre. So the other day I’ll give you an example The other day I spent a lot of time in rehab I spent three months in the hospital and I spent about 18 months in outpatient rehab and I’m still very happy but I now I do it myself care of funds through the NDIS
That’s the National Disability Insurance Scheme in Australia.
Anyway, I got invited to the hospital the rehab hospital the other day to talk about be a dummy my new job professional patient, but I love that you’re just like a physical patient and I’m kind of ever asked you to talk about what happened to you. They just want to use the fact that you have a weak arm or like you’re handy for for the expert. That’s to learn. I mean, it makes it boggles the mind.
Anyway, so I went they were doing a session on CMIT, which is constraint. Don’t know because constraint induce movement therapy, which is a lot of the idea that, you know, has come out of no one (inaudible) neuroscience like that. Now I’ve done that privately. And, my, complaint to the Occupational Therapist was why don’t you offer this publicly. Anyway, I ran into her recently and she said,
We are now we’ve just, you know, they’re always about a bit behind. And she said, I can come in and do a workshop. So I went into this workshop anyway, they were doing these activities on me and I knew from my experience that they were doing the activities which were advanced, they had to turn it back a bit because I done this with my physio, and I said, I said to them at the end, I just offered my own expertise. I said, I think this is too advanced.
A Brain Tumor Expert
I think in (inaudible) you know, I have this problem in my finger you need to be aware of that and you can’t, perpetuating me doing exercise incorrectly. That’s really bad for the idea. During your plasticity, and the physio kind of giggled and said, Why don’t we ask the expert and looked up at the trainer? And I said, I am the expert ask me. And she kind of giggled. Like that was funny. I was like, how was that funny?
Yeah, it’s the whole idea of, you know, learning comes from one place, and you follow a procedure process only if we stick to that, we get an outcome. And we cookie cutter that and we put everyone in that same method, process procedure, and everyone will be okay when they get to the end. And if they don’t, well, they’ll probably be an outlier. And we don’t really want them in our group, because we don’t really get results for people like that.
So maybe there’s something else for them. And I saw that when I was in rehab, and they were talking to me about how no you’ll be great actually. You’re young You’re of working age, you’re a father, you’re all these things. You’re the perfect candidate for rehab. And I’m like, What do you mean a this people that are not the perfect candidate for rehab, if they wake up from stroke and they can’t walk, they’re a perfect candidate for rehab. They’re not. If they’re older, they’re not of working age. And if they don’t have the time to achieve recovery, because of life expectancy, they don’t get rehab.
Actually, when I was, I never forget this experience, and I saw the doctor recently and I had this kind of
She can’t do anything
crazy reaction when I was in neurosurgery ward. So about three or four weeks after my operation, the rehab doctors came up to assist me And I could do nothing. I was in my stroke chair, I could do nothing. And there was slight flickers in my right index finger. And two doctors came the lead doctor and you know, the second in charge because you work out hierarchy very quickly in the hospital system. Anyway, the lead doctor just picked up my hand, she said, well she can’t do anything.
She can’t do anything. And I’m sitting there thinking
I couldn’t do anything. I couldn’t react. And then the younger doctor, he was lovely. He said, Oh, you know, why don’t we just head to the waiting list just takes a while to get into the rehab Ward anyway and, um, and she said, yeah, whatever you want kind of thing.
Um, and yeah, I just was like, because I had a letter bored I actually saw into my father does that woman have a brain injury? How you could treat other human beings like that? Number one, especially if you’re rehab doctor and you actually see human beings in these states all the time.
How did it make you feel? At the time? I know you couldn’t believe it was shocking, but like, on an emotional level, how did it make you feel in that vulnerable time?
like I was nothing, I had this overwhelming feeling that
I had it anyway, maybe it was part of the stroke and part of the craniotomy and I had this overwhelming feeling that the world needed to get rid of me and you know, probably came from the delusions I was having in ICU as well and things I thought they’ve almost trying to kill me. And so when she said that it just perpetuated that feeling. You know, like I’m kind of scrapped and they just need to push to the side kind of thing.
And I would say that even was perpetuated in the early days of rehab. Not by the allied health, though great, the physios and occupational therapists and everything. But the doctor were a little bit like he, because I couldn’t really talk yet. He talked to my husband all the time, who actually, English is a second language. So I thought, bro, you can talk to me, I probably understand more of what you’re saying, because you use the medical jargon and blah, blah, blah.
He kept talking to my husband. And then as my voice came back, because it slowly came back more and more every week, I saw his gaze shift to me more and more. And that’s how you don’t even realize that you’ve just done that. You know, um, and, you know, to some extent, every human does that we all seek some sort of reaction, but I think if you’re in that space, you’ve got to be super aware of it.
Yeah, your patient has to be part of the conversation, and they have to be part of it. Whether they can speak or not. I remember doctors coming into my ward at the beginning and talking about me in groups of 10s or something.
And leaving? Yes. Oh.
What do you mean? What are you guys doing? What are you guys doing all the time talking about me and then leaving? Hi, Bill Hey going, how about that? How about like, how are you today? Like, you know, anything, I may just acknowledge me pretend I’m in the room when you’re talking about me. It’s not a photo. Look, I get it. I think these conversations that you and I have many people experienced similar things.
And I think it’s changing with the new guard. And I say the new guard because doctors once they become doctors, they can be there for 80 years. So by the time they you shift those types of mentalities, you know, it takes a long time, but there’s new doctors coming in that are very switched on, who will be around who will be influencing the newer colleagues and I think everyone’s moving towards that more holistic Approach anyway.
And at least children before they go into medical school, I thinking in that manner, the thinking in the overall picture. And then they using the learning a tool, which is helping them help people but they have this ideology, which is a more of a holistic ideology at least that’s my hallucination. That’s what I reckon is happening. I might be wrong.
I have to say, I think there was a really big difference. And I noticed this early on between the doctors who had met me before the operation. So the whole army of neurosurgeons there may be before that admitted me
disaster happened and then they saw me afterwards. They were much actually much more empathetic. Like probably, they were quite you know, upset by what happened and I’m sure they’ve been a big debrief and blah, blah, blah. Yeah, they were quite good. And it made me think even at that time, it might be thinking about the importance of like, some sort of connection with a human being.
And then seeing them in a really vulnerable state as opposed to people that just walked in once they met me is like poster kind of thing. And I was just another, you know, number on the ward or, you know, that kind of thing. I have to say the allied health professionals are generally really good. You know, because obviously, they work so much more intensely with people, not this sort of like, in and out kind of thing.
It’s interesting the things that we don’t complain about. In this country. We don’t complain about the level of care, they don’t complain about the amazing technology, they don’t complain about any of the stuff that they do really, really well. Why because we are so blessed in this country. We have free medical care, and it doesn’t matter almost What’s wrong with you, you get it for free.
If you can’t afford to pay for it. I think that’s amazing, but most of the conversation is about the way people are treated by other people in hospital, who should know better. And, and that’s a really massive conversation because I think that’s where the work needs to be done. But look, with that being said, I can understand how doctors have a bad day nurses have a bad day, I get it.
And sometimes they’re going to come across incorrectly. They can’t please everybody, and not everyone’s personalities match. So there’s that as well. So I know anyone listening and watching I know that it sounds like we’re hopping on this thing, and we’re being hard on them, but we’re not we’re just sharing our emotional experience. And that’s an important part of our healing and recovery. So that’s why we do it. That’s why we have these conversations and that’s why
I have to say like when we’re praising the system is amazing. I mean, my first MRI was on Medicare because it was unexplained headache. The only thing I paid for was to see the neurosurgeon even on that there’s a Medicare rebate. I think I only paid a couple hundred bucks. And then they’ve MRI to get the GPS coordinates that they need to where they need to go in was on Medicare.
The craniotomy was on Medicare, which I didn’t even know how much those costs, do you know, probably about 100 grand or something. And then, I was in ICU for two weeks. I was in neurosurgery Ward for two weeks. I was in rehab for three months. And then I was in outpatient rehab for 18 months. So all the Allied Health all the rehab was on, you know, the got the obviously the government post pays, it’s not free to the world, it’s, it’s paid someone else pays. But I mean, I just think you know,
especially for things like stroke and, you know,
how can they not be How can people have to this should not be a process where you have to decide financially whether or not you can afford to bring back function basically.
People struggle with that, you know, the countries that are in the States, it’s a big issue. People come home with $70 $80,000 medical bills that they’ve got to pay off the rest of their lives. So I get it. So we’re lucky and I’m blessed. I didn’t pay for a single thing. I think I was only out of pocket. Over the seven years that I’ve been going through this I was only about a pocket, maybe five $600 in total. And I had an MRI every month.
At the beginning, it was monthly, it was weekly for about four weeks, then it was for nightly. And it was monthly, and that went on for about six months. So just the cost of that would have been extraordinary. And then brain surgery and all the stuff that goes after that all free. But that being said, just in case anyone’s going well, I want to live in that country.
Taxes are high. So we pay a lot of tax the 75,000 different types of taxes, but you get good services out of and we kind of appreciate the services and that’s where they come from. So it’s pretty cool. You’ve been on the media recently I saw you on national television. Tell me a little bit about that. Was that I saw you on a media article didn’t I?
Oh, yeah, sorry. Oh my god.
Um, yeah, I wrote an article in the Sydney paper. Like the is kind of a big paper in Australia. Yeah, just reflecting on I mean, it’s really interesting because I think we stroke such it’s such a learning journey. So every set of people like you know, in the two months out and then sparing us, I look Just right time down to really small chunks. It’s just like things unfold continuously.
So one of the things on that unfolded for me that I was really conscious of at the end of 2018 was like Ableism. So I’m not I would say on the disability continuum, I’m fairly functional. I have some deficits. I can do stairs at a push, but I prefer not to and I find going up much easier than going down. And it depends on the depends on the nature of the stairs steep or wide or, anyway.
And the thing I became really conscious of was just, like, even in 2019 Well, that was 2018. The new buildings are being built with stairs. I just find this bizarre, like, I kind of (inaudble) a building that’s you know from 1955 or something like when you know, there was no protocols but I just find it just mind, you know, what people who have when I say this to people who are perfectly able bodied I say, look, the building is basically saying stay out.
And they’re like, No, no, that’s not what people mean. And I’m like, Well, on some level it is, like, you know, creating a place where all people can go. Um, and, you know, like I said, there’s a real continuum of disabilities, but do you research like, it’s not that hard,
You raise a really good point because So, in a multi story, multi level building, they have lifts to all elevators to support people who need to go up and kind use stairs because they don’t get to the 30th floor. But if you’re disabled, that’s a great service.
That’s a great thing. You drive your electric wheelchair in, for example, or you push yourself in your regular wheelchair you go up and it’s awesome to get to the 30th floor. In a fire you’re not allowed to use the fire escape. Yeah, i beg your pardon you’re not allowed to use the elevator or the lift. You have to use the stairs. How the heck are you supposed to get out?
Exactly. And even just you know,
cafes like then just have like one step at the front. Like it’s not even like a whole slide, I just think look, it would have been really easy to level that, like, um, so a cafe that was built last year and they had this one stare at the front and I was like, and now would have been fairly inexpensive. I can’t imagine a cost that much to create a, you know
Just one smooth entrance.
You know, people might be able to get into their home because they’ve probably modified themselves, but it’s also about access to public buildings. And, you know, making the world as accessible for people as possible so that you see these people so that they participate like.
So how was it received? How’s the article received?
It was good. I think from the disability group, I must say I made one for (inaudible) which was good that someone told me because I didn’t realize. Because my disabilities, you know, visible, I get a lot of
not so much now because I can talk more, but I get a lot of people assuming that I
am deficient mentally,
Yeah, they had to talk to me really slow and, you know, patronize me and so I made one comment about being treated like an imbecile which as someone rightly pulled me up said, it’s actually a ableist language because that’s derogatory to people that have mental, intellectual disabilities. So that was the other thing and that was, you know, a good call anyway.
But no, it was it was very well received and um, I think one of the things that stroke unleashed, which is possibly an upside is, um I have enough emotional filters to know what to say and what not to say. But something is slightly off you know, so I almost feel like I’m in a film sometimes and say I want to say something and I go no Hannah people to say that don’t say that.
So the automaticness automatism, or whatever the word is, of my emotional regulation is a little bit gone. You know, in some ways, it’s an upside because it means that I feel everything so intensely. So it means that I feel love and sadness and everything quite intensely. And you know, it’s quite nice to feel that intensely sometimes.
Can I go my version of that experience? Yeah. Okay, I reckon I discovered my heart and my gut. When my head completely switched off, and it was as a result of having to find another way to continue on the planet with your head not working because after my second bleed, I lost my ability to type an email to remember what I was doing to remember what why I started something to finish a sentence. You know, I couldn’t drive I couldn’t work. There’s a lot of things I couldn’t do.
I’m not visibly affected by my stroke. People can’t see it. But it was a lot of mental cognitive impairments. And at that time, I started to notice this really strange sensation in my chest was like, This thing was happening in my chest and it was painful and it was weird. And I was like, what’s going on? It was my heart. But I actually started to notice that I had a heart there and it was beating and it was reacting to different emotions and feelings and experiences.
And I only think that was possible. Because my head was offline. So I get what you’re saying. And I do experience emotions now I thrive on that experience them greater, and I’m more loving and caring and Kinder. And I say I love you and a hug people and I sorry. So that’s my experiences. Is your something similar? Or do you also have like, what else is it for you?
What I was saying was in the article, I was quite direct. And so that I think that puts people off a little bit, but in some ways, it’s just what everyone’s thinking anyway. So for me, it’s a case of, I said to people, I’ve got every characteristic I used to have, you know, so none of my personality or, cognitive abilities have changed, but everything is on steroids.
Everything is times by the thousand so i was is a fairly direct person. Now I’m really direct. you know, I was always a pretty affectionate person. Now, I probably kill my family with affection. Yeah, um, I was always a pretty empathetic person. Now I feel like I have like a sixth sense. If you’re talking to me and feeling something and hiding it from me, I can kind of tell.
And so it’s, it’s, it’s kind of powerful. Like, it feels very powerful. It’s a little bit tiring, like, it’s tiring to live in the world so intensely. Um, but I was an extrovert anyway, so it’s not like I don’t enjoy picking up people’s energy and stuff like that. So that’s probably handy. Like I wasn’t an introvert.
It’s enhanced your spidey senses.
Yeah. So actually, it’s probably Something that gives me quite a bit of energy.
But yeah, it’s interesting. And so when I say you asked me before I, you know, about being, thankful for the stroke. I think that’s a very multidimensional statement. And I feel like it’s only a statement that people that have had strokes can give.
Yeah, let’s talk about that.
I put it out there that stroke’s the best thing that happened to me. It wasn’t obviously the beginning. There was no way I could relate to stroke is the best thing ever. But then when I reflect on how it’s changed me, and not physically and not physically how it’s changed me for the better. And I reflect on that and I think about how rich My life is now.
And I’m gonna talking about money. I think about how stroke is one of the best things that ever happened to me, and a lot of people relate to that. So how do you relate to that part of it? Which if at all? Is that? Is that something that you can say? personally?
I don’t know if I can fully say yet i’m only two years post, but I can see myself saying it.
Probably further down the track and I guess in some ways two years post, I can say it in some regards.
Tell me in what regard you can say.
I think the stroke has given me what happened basically, has given me I said to someone the other day, it gives me feelings of intense sadness, because I hear about a lot of people that have craniotomy is from an angiomas that a perfectly fine? And I think well why couldn’t I have just had a perfectly fine craniotomy?
But it gives me intense gratitude as well. So I could have died in that operation, that was a very real risk. I could have died 24 hours later, I could have stayed locked in for the rest of my life. So I think you know,and also, I think, you know,
I’d I’ve been to hospital twice to have both my kids that was basically it. And I think, you know, spending that too much time in hospital, especially on a rehab ward, you see the possibilities of what could happen to human beings. And it’s, it’s not pretty. And I think, you know, I got off pretty light really, like, my, like, friends of mine who, you know, have never been into a hospital or whatever they said to me, you know, like, it’s just messy.
We went through and I feel like saying, Do you want me to tell you the possibilities? Like I know, this could be a really depressing conversation about what could actually happen. So I think and to some extent, you can only have that level of gratitude by having such a horrendous experience.
So gratitude is important. It’s one of those things that enhances your life when you I feel like when you become grateful. And you said, You’re not quite there yet to say so gratitude isn’t enough. It’s not enough just to be grateful to look back and go, that’s the best thing that ever happened to me. Other things have to happen and you’re not there yet.
Well, I, I guess, in some ways, the jury’s out on whether I lost my whole career. So I am back at work, but the career I’m not back, I mean, back in a not back in the sense I’d like to be, now, um, I guess I placed a lot of importance on that, which could have been misguided as well. And maybe that’s the journey for me as well. Is that You know, these things that we hold on to quite tightly in this life like career and prestige and all that kind of stuff, maybe that doesn’t matter at all.
And to some extent, I’ve made some peace. But I guess you know, if that pans out as it may, I’m not quite sure how i will react to that. I mean, probably how i’ve reacted to everything so far, I’ll just more often change and evolve and, but I think that takes to be a bit longer.
I tend to agree, I hear you so maybe I couldn’t say that for a number of years until I got to the point where I looked back and enough had changed and I had evolved enough. And I had done enough work to accept overcome, learn, what have you re reorganize myself and then when I got there, then I was able to say Wow, if it wasn’t for this thing that happened in my head, I’ll be the same man that I was back then.
I was awake and
I was a good man, I was just a bit dumb. And, that’s part of what brings me to be able to say that there’s many other things, but that’s part of it. So I get why you’re saying you’re not there yet. And that’s pretty cool. That’s fine. No worries at all. So what kind of work were you doing beforehand?
I worked for the goverment so I was posted overseas. So I was expecting to keep doing that, like we, we had a plan. My husband is fairly happy to go wherever we had a plan that would just keep on posting. So I thought I’d have the operation in May 2017 and apply for a posting in the July. That was my plan.
When will rehab end
Yeah, I don’t know what will happen. I said to people, it’s funny because people at work, you know, it’s the kind of workplace where, you know, everyone’s got a plan and everything’s fairly set. And people said to me also when will rehab end? And I’m like, there isn’t really an end, like there’s a big question. And I find that humans well, lots of people find that concept really difficult to understand and then just kind of look at you and then look back at that computer like they can’t really cope with that.
That uncertainty that actually because you’ve lived with it for a couple of years now longer if it’s longer, you’ve actually accepted it to some degree. And so often you find yourself counseling people around you because other people are like, I don’t even know how to deal with it. And it’s like, well, you haven’t dealt with it so of course you don’t know But should you have to do it you’ll probably find a coping mechanism.
It’s interesting. So I find that whole timeline thing is interesting. Because people go to, they go to work, they work from this point on a day to that point in there. They go to wherever and they get this and then they go out at that time they go to uni, or college, they get a degree. And it starts in year one, and it ends in year four. So they have all these time constraints on everything. You build a house, it takes nine months you do this, it does that.
So when they come into rehab, they think, oh, okay, so what we’ll do is we’ll get a rehab will get that personal well, and then they’ll go home and everything will be fine. Or some people don’t get well and therefore rehab is never, never ends. It continues. Stroke tends to be for the majority of the people that I’ve spoken to a life long recovery afterwards.
And if you’re not recovering from the physical Part of it, you’re recovering from the emotional part of it, or a combination of both. And I keep having this conversation with dinner talking about people who are in wheelchairs and people who are feeling you have a more dramatic physical deficit than you and I, you, you see them, and they might be happy go lucky.
But they’re in a wheelchair that they weren’t in before, and what was happening to them. And just because they’re in a wheelchair and they appear happy and they’re rolling around and they can get places doesn’t mean that they’re not actually dealing with something really dramatic. They’re not dealing with pain, they’re not dealing with cramps, they’re not dealing with all the stuff that we can’t see.
And it has just only occurred to me in the last two or three months. I’ve spoken about it on a number of episodes recently, that people in wheelchairs are not just people who can’t walk. They are people who have pain and suffering. And other issues to deal with. So hopefully, what, what you’re able to do by having those conversations is just shed some light.
But you’re right, they don’t have the reference points in the past, in their past experience to understand the concept of on going recovery. It’s like learning, learning should be ongoing. It shouldn’t end after four years when you get your degree, now you’re qualified go and get a job.
Well, the learning continues in the job, and so does the recovery from something serious like stroke, and I talked about stroke, but something serious like cancer recovery, something serious, like, you know, heart attack, it doesn’t matter what it is an amputation. It doesn’t end its ongoing.
And I think when you say stroke is the best thing that happened to me. I think that gaining of that wisdom is probably the best thing that happened to me and I think that it can only happen through something dramatic, whatever that is, whether it be a stroke, or something else.
Wisdom that you gain from horrendous experience like having meningioma
And so I don’t I really don’t like motherhood statements like, Oh, you know, this is for the best or, you know, people that love telling you this and you know, have never had anything in their life. But I do like a much more nuanced conversation about the fact that there’s only certain wisdom that you gain from horrendous experience. And so, and I’m grateful for that wisdom because it you know, it illuminates so much in my life.
So, it’s a bit of a necessary evil, I guess. You call it, I didn’t know what it was. But it’s a bit of an it’s necessary to experience it’s a necessary experience.
If anyone ever said to me, what happened to you is for the better. They probably would have had a black eye no chance don’t tell me it’s for the better and there’s a lesson to learn I’m not Interested in learning lessons like this? But down the track?
maybe there’s a lot of lessons that I learned from it. Maybe I learned not to be such a hothead not to be such. So dramatic in the way that I did the bad or so, so good at doing the bad things. You know, I was really good at doing terrible things to myself and by terrible I’m talking about over working, smoking, drinking.
You know, just I was really good at all the negative stuff now I’m really good at all the opposite stuff. It’s the same energy, but it’s for a good cause. Yeah, just more more wisdom. It’s, it’s given me greater wisdom. And I never thought that I’d be able to get wisdom from that experience, but I can see now how it can get there. And yeah, motherhood statements usually come from people who haven’t had a lot of life experience.
Yeah, that’s I’m just hoping to project in a positive way and to make somebody feel well, and I love why they’re doing it. I love that they’re doing it because they intend to do well. And to make you feel like hey, but it’s not really useful at the time, this the right time for everything. And that’s not the right time at the beginning.
This I argue with some people sometimes because they said, oh you should be kind that people mean well. And I said, look, I think most humans mean Well, I think that’s the general law of humanity is most humans are well intentioned.
But that doesn’t mean that I can’t tell them about how that makes me feel. And for them, maybe learn something from that discussion. So I don’t think we should just think all people mean we’ll all therefore I have to shut up like it’s just life is a process of learning. So, you know, it’s like that woman who pulled up on the ableist language in the cut in the article I’m glad she did that I needed to learn that I need to understand that the word those words and the language it’s appropriate to use.
And so if someone’s had an experience that you haven’t had, then maybe you should just listen to that experience, you shouldn’t dish out a motherhood statement or, and that goes for all the experiences like I actually it’s open my mind a lot to experiences of race, you know, like, as a white person, I don’t know how people of color experience the world, maybe I should listen to how they experience the world. Like that might be, you know, or someone that’s gay or something, you know, like, it’s, it’s really important that people don’t just stamp their assumptions about those people onto them and actually listen to this story.
Yeah, go to a Asian country and be the only white person go to a African country and be the only white person you get to know how people experience racism in Australia like it’s the same over there. The same negative way of doing things in countries like, you know, anywhere else, where the majority rules. That’s the experience. And we’re just grateful, we’re just lucky that we haven’t had that experience and therefore we can’t relate to it. And therefore we try to, it’s not really that bad, we don’t really, really mean Well, it’s just a joke, and it doesn’t matter.
But if there’s a fly on your head, and somebody has a hammer, and they go to shoot that fly with the hammer and they hit head, they meant well, but not the right way to go about meaning Well, its meaning well has to have the actions that are associated to the correct outcome. And if you make just because you mean something to be a great outcome, but you’re using the wrong tool to deliver that outcome. Well, that’s my point in that there’s no point in attempting to main well, while using a sledgehammer to Shoo fly doesn’t work. So you’ve got to adjust.
The people need to adjust the method for delivering their well intentioned comments. That’s what you’re doing by telling people and I don’t think it’s a problem. And if they do AB react, I think it’s a bigger issue on their part, rather than on my triggering, that if they’re being triggered by me saying you shouldn’t say that to somebody who’s next. Well, then, you know what, that’s maybe something that they needed to hear and maybe they’ve never been told before.
And if they’ve never been told they’ll never have a point in life to start understanding why something is not appropriate. I can I have certain friends that can call me certain names, but you can’t do that. Yeah. Because you don’t know the context by which they have permission to do that doesn’t make it right. Just because you heard somebody say something to me that you can say that you don’t understand where it’s coming from. And your delivery might be perceived by me in a way that offends or hurts, etc. So it’s a really deep conversation.
And I’m glad that you tell people what you notice and what you see. Because the people that you’re intending to do well to really need more people sticking up for them, so to speak, or more people speaking out on their behalf. That’s what we really need to do. We need to really create a conversation. So keep doing what you’re doing and learn the lessons and it’s so great that you can take it on the chin so to speak, you know, when somebody says, Thats not how you speak you said it like just a regular person who’s speaking that way, that’s great.
That’s how you learn. That’s how feedback helps make your Message tighter and more impactful. Because you take that out and now you bring together the entire community says, well, pen is one of us. She’s one of them. She’s whoever she is, but she speaks really well on our behalf. And that’s what we want people to speak well on their behalf when we can. So what type of work do you do now Hannah ?
(Inaudible) find you a job that it’s more that for me, the interesting work was overseas and the work that I was interested in. So it’s not like I didn’t expect it, of course to do some camper time. But I don’t know how long that will be for basically. Because the thing about going overseas to is you have to work full time and I’m not sure I mean, even though I’m back at work, I’m not back full time. So and also, there’s an opportunity costs because I need to continue rehab.
So I can’t work full time. But maybe in five years, you know, I will have integrated work enough into my work day that I can I mean, so integrated rehab enough into my work day though. I can work full time, but the problem is, so there was a strike, but there’s also quite a bit of residual tumor. So they didn’t get it all they stopped once I had the bleed , which I’m glad I did. Because they can do more damage. And it’s growing again. So that’s also something I have to deal with at the moment.
So it would be nice to just have to deal with the rate stroke rehab and not think about the tumor. But no, it just started to grow again, I figured that everything has a will live. So it’s but it’s growing slowly. I mean, I’m not symptomatic. It’s growing slowly. So you know, there’s a few options on the table. So Have to see a few specialists and see what what those are. But frankly, I just prefer not to think about
If that works for that why not.
Yeah, exactly. That’s what I said to people that are going, you’re going to see specialist and I’m like on July and then like is that soon enough? And I’m like, Yeah, and I feel good today. So let’s just think about today. I feel good right now.
When I have a conversation with them, then I’ll think about, you know, what is going to happen in the future and, you know, that kind of thing. So,
Yeah, and there’s no point, trying to worry about things that are going to happen in the future, that may not even happen, you don’t even know really. So it just best to just because that creates anxiety, it’s best to just do what you can with what you’ve got right now. And then as things present themselves and deal with them when they come, you know, that’s what we do every other time. We don’t normally try to anticipate every single thing that’s about to occur or may occur, we just go for it. And then when that occurs, we deal with it.
Yeah, anxiety is an interesting issue because before the operation I actually had a lot of I had what they call generalized anxiety disorder, pretty anxiety, I functioned fine but I had this constant anxiety and it was that constant and projection about the future and I think since the operation it’s it’s changed somewhat so i don’t i don’t think about I don’t think about those things near future I think I hold much more likely to things that are going to happen in the future so I like that analogy of holding tight and holding lot but I do it’s it’s probably lessen now but straight after the stroke and probably for a year, I had a lot of fear around day to day events are getting in the car, crossing the road.
Because I think I’d become aware of how quickly life can change. And I would say we time that’s listened to the bit but it’s still always in the back of my mind. Like if I get home after you know, just go to the shops. I always just say a little like, thank you on to my breath like that nothing happened to us in the car. Like it’s just gonna wake up in the morning, I think oh im still here.
Sounds like a little gratitude practice that sounds. That’s That’s awesome. There’s nothing wrong with that. I remember the same anxiety learning to walk again and the had an amazing therapist and it goes to me so what else do you want to be able to do? And I said run. And he said, Okay, well for sport this that? I said no just to get across the road.
So if a car is coming, I can get ahead of the way. So that was an anxiety that I had, and that was something that I needed to deal with. But it wasn’t a debilitating anxiety. It was just like, I might if I get stuck in the middle of the road and there’s a car coming. I can’t run away. It’s not good. I got to resolve that issue.
Yes. Yes crossing roads makes me feel a bit anxious I you’re very focused like it’s as soon as that gray man goes off, you got a
Like a merit sprinter like the sprinter can if you can run that fast. But the other thing about what you’re saying is I have a little gratitude thing that I do at night before I go to bed. Oh, yeah, yeah. So I’ll do a little thank you for my family, thank you for and then I name all the people and then when it gets too many people, I say thank you for that family. And thank you for those people.
You know, a try not to use every single name for everybody that I’ve ever met. But I do that, and I appreciate being around them. And thank you for having them at my house for my birthday and all that kind of stuff. And it takes about 30 seconds or a minute but I say in in my mind, I sat quietly and allows me to wake up up in the morning, looking forward to having interactions with people again and starting the whole thing. And tonight when I go to bed, I’ll say thanks for Hannah.
Thanks for the interview.
You know, thanks for sharing and all that type of thing. And I just feel like it makes me feel a little bit like it makes me feel like I was also present in that day. And then I noticed the things that I experienced, which was great, because many times somebody would say, you remember when we went there to that place in did that cinema like, well, we’ll wait together a couple of days ago. Yes, man, you know, went way to go. So, I like what you do. I like how you have come.
Come through this and I love how you’re looking forward to the future or not looking forward to it. And I’m not saying or you know, as in not project Going forward, I suppose is the better word. And that’s a great thing you got your children, or is it just one or two children? Yeah. Tell me about the children. How old are they?
10 and 8. So I’m actually that was funny because when I was in hospital, just quite soon after I had this intense feeling of gratitude, like thank god, they’re not tiny. Because I’ve got friends, you know, still having babies. But they were, you know, eight and six at the time or something. So, and I remember like, with this level of disability you like, thank God, they can feed themselves and dress themselves.
And um, so yeah, they’ve been good. I think, to some extent, the recovery has been good for them because they just assume it will continue. They don’t have the level of scientific knowledge to understand the nuances and that’s Good. I remember the first time they saw me in hospital. I couldn’t do anything. I could. I could, I could see them and I could feel for them, but I couldn’t physically do anything. And they were a little. They were quite taken aback. I remember my daughter’s face, especially she’s the younger one. And she said to me later, you know, you look like you but you weren’t you.
And I think, yeah, that was really tough. You know, but my husband was around and my parents are around and my siblings around and I do have an amazing network of friends. I
did, I’ve actually kept all of them. It’s quite phenomenal.
And, yeah, I just think, yeah, they were pretty well looked after. And I think they’ve dealt with it pretty well.
Yeah. Hello, that’s Awesome On that note, thank you for being on the podcast. I really, really appreciate it if somebody wanted to connect with you because they relate to your story or they’ve had something similar happened somewhere where they can go and do that.
So I actually have a blog. It’s www.hannahderwent.com. And I think they can find the way to contact me on there.
I’ll have that link in the show notes. So people in all wants to contact.
contact me through my Instagram with they want.
Yep, we’ll put a link to that as well. Yeah. Well done. Congratulations on your recovery so far. Thank you so much for being on the podcast. I really appreciate it. And I look forward to just hearing more about how your recovery is coming along.
Yeah, I’m excited to see how it unfolds.
It’s amazing that you can have a tumor growing your brain but your brain to recover and the brain is just phenomenal.
Yeah, we are, we are totally phenomenal. And yeah. It can recover, you can. And then you can also adapt, like your eyes have adapted to the way that vision is for you now. We can adapt, and I’m not. And I understand, you know, some of the struggles that some people have to deal with that they can’t adapt to. And I get, you know, that extreme part of what stroke can be. There’s a lot of us that are not in the extreme.
But humans and just animals, all species on this planet are good at adapting. So if you’re going through this right now, and you’re feeling like it’s really, really tough, just know that if you have a goal that you set your mind to your body, your brain will find a way to support you to get there. If, you know if you just stay the course and then have a lot of stroke patients don’t have all survivors don’t have our option but to stay the course. And I know it’s hard, but I just want to offer hope. And that’s part of what I’m going to do. So, what I’m doing with the podcast, I’m going to stop talking because now I’m struggling to put it into words. So just thank you again.
And all the best.
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