Kate is a childhood stroke survivor and disability advocate. Kate experienced a life-changing stroke at 10 years old, completely paralyzing the entire left side of her body. Through her will to recovery, she developed an inner strength beyond her years, a compassion for others, and a personal desire for recovery. These three qualities gave precedence for Kate’s will to give back to others.
She is using her unique strategies for everyday living skills to assist others with limited arm movement reach independence. Kate has an internationally acclaimed book and fun and educational Youtube videos.
Links:
Book: Beyond Stroke: Living Independently With One Arm
Youtube: One Handed Living
Instagram: instagram.com/onehandedliving/
Facebook: facebook.com/beyondstroke
LinkedIn: Kate Ryan
Highlights:
00:56 Introduction
02:33 Stroke At The Age Of 10
10:45 Post-stroke Challenges
17:39 Being Treated Differently
24:20 Today’s Advantages
34:07 The Power Of Acceptance
42:30 Living With One Arm
52:29 Sharing Your Story And Helping Others
1:00:25 Look For Solutions
Transcription:
Kate 0:00
I don’t want to live like this anymore. I don’t want to live with, you know, being isolated and depressed and just grieving this old life. I don’t want to live like this anymore. And it was like butterflies just lifted away and I just saw the world in a different way.
Kate 0:20
And then I was like, far out. I’ve just accepted everything. And I’ve reached that, you know, the grief stage that goes in stages, and I’ve reached acceptance. And I was like, wow, that’s bloody unbelievable, and I did it all myself.
Intro 0:43
This is the recovery after stroke podcast, with Bill Gasiamis, helping you navigate recovery after stroke.
Introduction
Bill 0:56
Hello, and welcome to recovery after stroke, a podcast full of answers, advice, and practical tools for stroke survivors. To help you take back your life after a stroke and build a stronger future. I am your host three times strike survivor Bill Gasiamis. And after my life was turned upside down, and I went from being an active father to being stuck in a hospital.
Bill 1:16
I knew if I wanted to get back to the life I loved. My recovery was up to me. After years of researching and discovering, I learned how to heal my brain and rebuild a healthier and happier life than I ever dreamed possible.
Bill 1:30
And now I’ve made it my mission to empower other stroke survivors like you to recover faster, achieve your goals, and take back the freedom you deserve. Now if you enjoy this episode and want more resources, accessible training, and hands-on support, check out my recovery after stroke coaching membership created especially for stroke survivors.
Bill 1:49
This is your clear pathway to transform your symptoms, reduce anxiety, and navigate your journey to recovery with confidence, head to recoveryafterstroke.com To find out more after this podcast. But for now let’s dive in to today’s episode.
Bill 2:05
This is Episode 145. And my guest today is Kate Ryan, who experienced a stroke at a young age of 10. And has lived with the inability to use one of her arms since that day. Kate has overcome a lot in the last 34 years and some of the lessons she learned ended up in her first book “Beyond Stroke: Living Independently With One Arm”. Kate Ryan, welcome to the podcast.
Kate 2:32
Thank you.
Stroke At The Age Of 10
Bill 2:33
Thanks for being here. I really appreciate it. Tell me a little bit about what happened to you Kate?
Kate 2:39
So my stroke happened on June the 9th. So coming up to my anniversary, June the 9th 1987. Where out of the clear blue sky, I was 10 years old and I’ve been in school during the day, and that afternoon at about 3:30 I sort of had a headache.
Kate 3:13
And it was quite a bad headache more than usual. And I said to my mother, cause I very young, I said Mom, I’ve got a really bad headache. And she must have noticed something that was unusual. And she said, well just stay at home. Because I was on my way to a ballet class.
Kate 3:35
And she said to stay home from ballet tonight. And I said no, no, no, I really wanted to go, I was a very driven child and like to achieve a lot of things and said no I’m going to go.
Kate 3:48
So I went to the ballet class, which is only 10-20 minutes away. And I had I just got progressively worse and was only five minutes into the class. And we were doing neck exercises.
Kate 4:04
And I was like, I’ve got this headache. I’m going to try extra hard today. And I went over really really far on the right side. And I’m not sure if that has something to do with it or not.
Kate 4:19
But yeah, I straight away we were doing floor exercises after the neck exercises. And the teacher said, are you okay Kate, do you want to get a drink? And I said, sure I said yes. And I went up to get a drink, and the next moment I found myself in the chairs at the front of the ballet class.
Kate 4:54
From then I was fishing, I was fishing because my
Bill 5:04
From the seizure.
Kate 5:06
No, I wasn’t having a seizure, I found out later that oxygen wasn’t getting to my brain. So the blood wasn’t going through to my brain and the right side of my body was jumping up and down and, and there’s a secondary ballet teacher, and she was actually holding my body down.
Kate 5:24
And that was the absolute worst thing she could have done. So in these times, they didn’t bring an ambulance and they didn’t ring my mom this was before mobile phones, which is crazy when you think about it, because with a stroke, the time it can make such a difference that they didn’t think, you know, a 10-year-old girl was having a stroke.
Kate 5:25
So yes, so I laid on these chairs and was just in absolute agony. I described it to my doctors into friends and family as an axe, just going in and out it just felt like an axe was going in and out of my brain.
Kate 6:05
After about an hour and a half, they didn’t call an ambulance, but one of the little girls in the class knew the home phone number and they called my mom and mom just came straight.
Kate 6:18
And I just remember just going so fast went to the hospital, and local hospital was taken by ambulance to Prince of Wales, which is now called Sydney Children’s Hospital. And I have had a stroke.
Kate 6:35
SoI had lots of awful, very, very painful tests where they injected hot dye into the blood supply to see what happens to my brain. And yeah, so I’d had a stroke and hemorrhagic stroke to the right side of my brain affecting the full left side of that body, which included my face, everything completely paralyzed. So yeah, pretty terrifying, and heartbreaking thing that happens to a child.
Bill 7:15
How old are you now?
Bill 7:17
I’ve just turned 44 embarrassingly so.
Bill 7:19
I’m older than you. So don’t worry about it too much. But you talk about it so vividly like if it’s still fresh.
Kate 7:35
Absolutely. I think about it every day. I think about it every day, I remind my children how lucky you know, my daughter was complaining about a wobbly tooth. And I was telling her how lucky she is to have healthy teeth.
Kate 7:48
And I think about it all the time, I think about all the memories I have of my childhood of you know, being a ballet dancer or having fun on my bike riding to my friend’s house and all those things I wasn’t able, have never been able to do over again.
Kate 8:07
My left side of my body, you know, I lost my balance. So I remind myself, so I have kept those memories alive. Because if they fade away that would be awful to me. They’re very vivid, and I like to keep those memories alive.
Kate 8:24
And it was such like giving birth for example, I’ll never forget the moment that I gave birth to each of my three children, I could remember those times vividly. I still remember lying on the table when I was having the CAT scan.
Kate 8:49
I remember feeling like I was going to fall off the table because I couldn’t feel one side of my body. And I remember you know, them saying don’t move Kate and I remember feeling angry when they were saying don’t move and I was lying as still as I could, I remember the feelings and of course the pain of it. So yes, certainly I kept those alive.
Bill 9:22
Is the memory distant? Or is it still fresh in that are you re-experiencing that? Are you traumatized by that? And therefore you re-experiencing the trauma? Or is it just a situation that you remember? And you have a vivid memory of that situation? So basically, I’m just trying to see if there’s separation now of time between 10 and 34 years have passed? Is it in the distance in the past or is it still in the current time?
Kate 9:52
Yeah, it’s in the past now. And I’ve sort of separated the pain. I’ve gotten past the anger and the frustration and the grief of it all. But I mean, certainly that’s taken a very, very long time to get there.
Bill 10:18
Yeah. So, I contacted you, because I saw the post that you did with one of your daughters about some of the challenges that you’re experiencing, and some of the problems that you have, using just one of your arms because the other one isn’t able to be used to do up shirts, and to do all that kind of stuff.
Post-stroke Challenges for Kate Ryan
Bill 10:45
Tell me a little bit about the thinking behind that post on Instagram, what’s the purpose of you sharing a post where you’re chatting with your daughter about how you go about buttoning up your shirt or putting on clothing?
Kate 11:00
Yeah, so being a childhood survivor of a stroke, is probably different to these days. But back in my day, there really wasn’t any help. And I just had to learn how to do everything, again, very, very, very quickly.
Kate 11:19
And I had to learn how to do things with one hand, and I had to pick them up, pick it up, like doing buttons up with one hand or how to make toast with one hand. And I found that as I was getting older, I found out that speaking to other stroke survivors, especially older people, they were just not able to do these activities.
Kate 11:43
And I had a wealth of knowledge, in my mind that I thought, wow, all these people could benefit from the things I know, there are so many even little things that I lived in a house that had double door handles, and I worked out, I couldn’t get out of the house for the first couple of months until I learned how to do double door handles.
Kate 12:06
Which for anyone is who’s struggling. It’s you hold the bottom one. And you turn that and then you turn the top handle with the upper part of your forearms. I learned how to do that, and just so many things.
Kate 12:23
So I just started now that there’s so much social media and opportunity to tell people I thought what a great way to present it in an entertaining format, or you know, in an educational format my daughter has been helping me, make them fun.
Kate 12:42
And we did that one on how to do up buttons with one hand. Because once you know how to do it, it’s quite simple. Really, you know, we don’t need to use all little fancy tools or, you know, velcro tops, things like that once you know that a quick little knack you can live just like anybody else.
Bill 13:09
That’s important. You’ve got no choice really attend, you need to be a problem solver, don’t you? You just need to find ways to solve all these problems. And it doesn’t seem to me that a 10-year-old really gets caught up in the problem they get caught up in the solution. Would you say that’s accurate? Is that how you would describe your path towards overcoming the challenges that you would face as a young kid after especially after before the stroke, you were able to operate as most people and use both arms?
Kate 13:44
Yeah, well, I was an like I said I was an extremely driven person and still am. But never came into my mind that I would you know, have had a stroke or I’ve not been able to do things with two hands. But I just found that occupational therapy, in fact, it wasn’t very helpful to me and my, you know, a child’s brain can adapt very quickly.
Kate 14:18
And, you know, that’s where we go to school. And we’re young, because we’re learning we have the ability to learn new skills really quickly. So you know, if I was trying to get on, you know, for a little while I couldn’t get upstairs. So I had to learn how to get upstairs by myself because there was nobody there to show me how to I couldn’t wait until Monday when my occupational therapy class was.
Kate 14:48
I had shared it with 20 other school children trying to get up the stairs pushing me out of the way but I had to learn away how to how to do it. So it was just a matter of adapting so that I didn’t get left behind.
Kate 15:04
So, whereas an adult could you know, might have certain adjustments, they could stay at home, or they could have time off work. And you know, certainly, I was really angry and depressed and frustrated, and all those things just like anybody else, but at the same time, my brain is forming new patterns quickly and in different ways.
Bill 15:40
Yeah. What was it like being at school? And going through the teenage years with the challenges that you faced? Did you feel left out? Did you feel isolated? Was any of that an issue? Or did you just blend in and we’re one of the regular kids?
Kate 15:57
Yeah, no I didn’t feel left out or isolated. I was pretty lucky in that way. But I did feel misunderstood. People just didn’t understand and didn’t care. I went to an all-girls school, and some of the girls were really, really hurtful.
Kate 16:22
And, I also developed epilepsy as a result of the brain injury. And even though they told me that I was putting a seizure on or, making it up or leaving school early. And no I have lots of tears and lots of hurt feelings.
Kate 16:38
I mean, it’s pretty awful the things that they said, but I never really felt alone. The only times that I was feeling alone was in the initial stages when I had my stroke when I was in year five at school, was in those early stages where I found it hard to play with other children.
Kate 16:38
So that was when everyone played and did skipping, or whatever I did, and I wasn’t able to do that. And I didn’t feel that I could bond with my own friends. Because I couldn’t do those playing activities.
Kate 17:19
And a lot of the people a lot of my old friends did actually didn’t want to be around me and couldn’t relate to me anymore, because I look different, or that sort of thing. But yeah, it was a lot tougher as I was in my high school years.
Kate Ryan Was Treated Differently
Bill 17:39
High school kids can be so cruel. I know what little idiot I was when I was at school, and how cruel I could have been to other people, for all sorts of reasons. And I didn’t think twice about it, like you just misbehave and you just treat people badly. And you wouldn’t even think about the impact that you’re having on them.
Bill 18:00
Nobody ever really stopped to say to you, this is the impact that you’re having on me. And even if they did, I don’t think I would have taken it seriously, I don’t think I would have listened. So I wouldn’t have considered myself a terrible person. But in my group, when you know, the other group of, you know, kids was giving us a hard time, we would just give it back just as hard and if not harder, you know, everyone will try to outdo themselves as to how terrible you can be to each other.
Bill 18:31
So I can imagine when you’re a teenager, and you’re not thinking about the feelings of the other person, I can imagine how they might mistreat somebody who’s doing it tough.
Bill 18:43
And who’s an easy victim, they may have seen you as an easy victim, and therefore, some kids would go after that, because they get an easy win some kind of an easy ego boost or something like that. Did you ever bring that up with your parents and raise it with teachers? Or is it just something that you dealt with?
Kate 19:03
I think as part of the times that it was I tried raising up with the school counselor but she definitely wasn’t helpful at all. She used to say to me, you need to see the glass is half full, not half and just like are you serious? You know, look at the situation and I was struggling you know, she’d helped me with my reading or something and I’d say and I was struggling at home as well you know, my family certainly didn’t always understand about what I was going through.
Kate 19:42
Which is I here is a common scenario with a lot of families after they have a stroke after the person has a stroke. To receive advice like that, I would often get upset with my friends but really didn’t get any support. from anybody, but I think that might be a part of the times, I’ve noticed that just looking back at my school, they’ve changed a lot.
Kate 20:08
And that might be a part of the times that at high school in the early 90s. So no, and from my family, not a lot of support, I think they were struggling with their own difficulties in accepting how much I’ve changed and their own problems within marriage and the marriage thing, being the older brother or someone who’s had a stroke.
Bill 20:43
Did you have siblings?
Kate 20:45
Yeah, I have an older brother.
Bill 20:48
Did he treat you differently? Or did he treat you the same give you a hard time?
Bill 20:52
Yeah, very differently.
Bill 20:53
Okay. It’s just interesting to hear what happened and how people react and respond because every stroke is different. Every person is different, every family unit is different. And I think that’s what makes it difficult for stroke survivors is they don’t seem to have a regular cookie-cutter thing, I fit into this, and this and this, and this and that.
Bill 21:19
And I can relate to all of that. And it’s not a great experience that I’m experiencing. But at least I know what I’m going through is similar to somebody else, or the same as somebody else. And part of what we get in the community that we’re on Instagram, and the conversations that we have online is we get people for, you know, from time to time finding some similarity in what happened to them to what happened to somebody else.
Bill 21:47
And they go, Oh, okay. It wasn’t just me. And I’m not sure how, but that makes it better. That seem to make it better that you’re not in it alone. Did you have anyone else that was similar to you, when you were growing up that you could relate to?
Kate 22:02
There was absolutely nobody. And there was absolutely nothing? Absolutely no one for me to relate to. And absolutely nothing. There was no social media, because people have to remember, I had a stroke in the 1980s.
Kate 22:20
And there was no mobile phones, there was no internet, there was no social media, there was only the Yellow Pages and the white pages. I used to go to adult physiotherapy and adult rehabilitation centers.
Kate 22:40
And when I said, I think in the 2000s, late 2000s, they said, Oh, there’s a stroke group, in about and hour away, an adult stroke group. And I’m not going to an adult, I was in my early 20s, and interested in going to nightclubs and things like that. And I said, I am not doing that.
Kate 23:06
And forming an identity Finally, and there was absolutely nothing for me. So people were having strokes now really have it lucky, to be quite honest. And with that there was zero, there was such little understanding about strokes back then I had no friends who understood there was absolutely nothing.
Kate 23:34
When the internet first started coming about, I was looking online for you know, people that have had strokes as kids and stuff like that. And there was like a little bit in America, but I couldn’t contact them. It was really just so isolating so alone.
Kate 23:52
And also I had epilepsy. And I was stuck at home a lot because of having seizures and also the side effects of the medication. It was extremely isolating and heartbreaking and confusing. And that was probably the worst part of everything is the isolation. So it’s far far worse than what people experience today.
Today’s Advantages
Bill 24:20
I can’t imagine even in 2012 when I had the first bleed in my head and then in the subsequent years, there was nothing because it seems like it wasn’t that long ago, but it might as well have been 20 million years ago because in 2012. Instagram wasn’t booming. There wasn’t a lot of people online podcasts were up and running. But there wasn’t a lot of conversation on podcast around these types of topics.
Bill 24:48
And if they were they weren’t specifically around stroke. So when I did my podcast, there was nobody else talking about this online at all and getting people on To the podcast was really difficult, it was so hard to find people to talk to. And then I started to get really serious about it maybe about three years ago.
Bill 25:09
And I started to notice a big turn a big wave of people actually reaching out to be on my podcast, which wasn’t ever happening before, there wasn’t really something like that. Now, I know that other people have had podcasts on different topics for many more years before me, but there just wasn’t that much about stroke.
Bill 25:29
And at the moment, there may be a three or four other podcasts on stroke. And that’s about it. And yeah, there’s people that talk about neurological challenges. And there’s people that talk about overcoming, you know, brain injuries, and all that type of thing. But there’s just not specific stuff around these topics.
Bill 25:50
Now, maybe it’s because stroke is one of those things that messes with people’s brains. And it’s harder for people to put stuff like that together, I don’t know. And fatigue obviously causes a lot of issues. And for me, it was really difficult to overcome all the challenges of fatigue, and all that kind of stuff.
Bill 26:08
So I think stroke survivors kind of have to work a lot harder to get to the point of, quote, unquote, being in a normal world. And I and I used to find myself, getting myself fatigued, just trying to get through a regular day.
Bill 26:31
Because to get through that regular day, I had to really overcome a lot of challenges, a lot of stuff that was going on in my head and in my body. So that lack of energy, the fact that we get so diverted away from our tasks, and the fact that we get so diverted away from our energy gets drawn to different places. It doesn’t surprise me that there’s not more going on.
Bill 27:02
But what I love about it is there’s enough going on, so that people who are, man, so that, unfortunately, if 10 year olds have a stroke these days, at least their parents can come online, and they can find a group of people and go, Hey, this just happened to my daughter, which I get all the time.
Bill 27:23
And what can I do? Just one of my posts that I put up recently, somebody asked about their four year old daughter doesn’t allow mum and dad to touch one of her sides, I think it’s her right hand or something like that. And it’s because it hurts. And that’s exactly what happens to me, my wife still forgets, and she goes to touch my left hand, and I’ll pull it away, because it hurts when she does it.
Bill 27:49
When I touch my own hand, it doesn’t hurt. And when I use my hand to pick up a tea or a coffee or anything like that, it’s all good. But you can’t touch my hand. It’s really annoying, right? The skin is really impacted. What’s great is that mum has probably had that in her head for ages, and or going online and finding a community.
Bill 28:17
She asked the question and got an answer immediately. And that was amazing that I could do that for her and totally relate to it immediately. So yeah, we definitely have got it a lot better than we had. And that’s a blessing in the whole situation, isn’t it that you think it’s a great little blessing?
Bill 28:36
And I do thank technology for my ability to have this format, because I honestly don’t know what kind of person I would be if I didn’t have this format where I could speak to stroke survivors from around the world. And I’ve spoken to more than 145 at this stage. I don’t know what I would have done if I couldn’t have done it. And if I wouldn’t have reached out to you and have you on my podcast today. I don’t know what what I would have done.
Kate 29:04
Yeah. Yeah, I didn’t have any of that. Yeah, that would have been a blessing is you know, just you’ve known one other person that had had a stroke as a kid would have been. One thing that I used to do. When I was young was I used to look everywhere. I just used to look everywhere for someone that had had a stroke, look at someone under like 15 and once I found one, he was like 15 or something.
Kate 29:45
And that was just something and I spoke to him and that’s been when you have your stroking but and I was like 18 by then but it took me eight years to just I used to just so I could and I went up and spoke she was on train Yeah, it was really, really, really hard for me.
Kate 30:07
Being so isolated, and having no support and no idea of, anything like I can’t even imagine, what having a stroke would have been like if I had had some, some kind of support.
Kate 30:27
Because there was no counseling, there’s no social work, there was nothing. As a child, they didn’t even come. If they did come to me in the hospital, I certainly don’t remember any impact that it made within my hospital stay. Yeah, there was no counseling, nothing.
Bill 30:47
It sounds like a million years ago, it sounds like you’re talking about, you know, the 1500s It’s so ridiculous, that it’s only been 34 years. That’s not a bloody long time that we were lacking all that support. All I can say is I’m grateful for the support that people get nowadays.
Bill 31:08
And it’s improving, and it’s getting better. And even still, it’s not enough. And people tell me often that they don’t have enough support. And I get it because you know how much support people need is different compared, you know, for every person because every person stroke is unique, and every person’s needs are unique. That being said, Are you then relieved? Are you online and going, Oh, my God, I can relate to that person? Oh, my gosh, this is unique. Did that happened to you or not?
Kate 31:39
No, it doesn’t. Because I don’t spend a lot of time online. Because I was forced to work on my own recovery. Because I found that I just went into, I’ve talked to in some of my speaking engagements, I’ve talked about this, I just went into the depths of despair, I went down into depression.
Kate 32:16
Like I said, After that I was so angry, it was constantly Why me? Why me? I was so angry at the world, I was looking for somebody to blame something, anything to blame. so frustrated, not being able to do anything, you know, my sports, my ballet, I was playing musical instruments, all that sort of thing.
Kate 32:41
And I just wanted my old life back. So I was kind of forced to do everything myself. And I was all by myself doing it. And I found that I progressed through a kind of recovery and my grief. And, when I got into it, so that was all sort of through my teen years. And, and with no support whatsoever, I just fallen away at this.
Kate 33:15
And, then and then in my early 20s I am still being really depressed. And that sort of thing. I started sort of playing with the idea of I’m gonna have to start moving on with my life. But how am I going to do that? And I don’t want to move on and what am I going to do now?
Kate 33:40
And I started playing with my identity and I want my old life back? And how am I going to do that? How am I going to get my old life back and then in my 30s I had my three children, pretty close together. And I had twins.
Bill 34:05
Lovely and cruel at the same time.
The Power Of Acceptance
Kate 34:07
Yeah a package deal. And I had my daughter as well. So and shortly after that a couple of years later I was just sitting in my car and after speaking to someone on the phone, and I was just like, I don’t want to live like this anymore. I don’t want to live with you know, being isolated and depressed and just grieving this old life. I don’t want to live like this anymore.
Kate 34:37
And it was like butterflies just lifted away and I just saw the world in a different way. And then I was like, far out. I’ve just accepted everything. And I’ve reached that you know the grief stage that goes in stages and I’ve reached acceptance. And I was like, wow, that’s bloody unbelievable. And I did it all myself.
Intro 35:07
If you’ve had a stroke, and you’re 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 things but obviously, you’ve never had a stroke before, you probably don’t know what questions to ask.
Intro 35:32
If this is you, you may be missing out on doing things that could help speed up your recovery. If you’re finding yourself in that situation, stop worrying, and head to recovery after stroke.com where you can download a guide that will help you it’s called the seven questions to ask your doctor about your stroke.
Intro 35:51
These seven questions are the ones Bill wished he’d asked when he was recovering from a stroke, they’ll not only help you better understand your condition, they’ll help you take a more active role in your recovery. head to the website now, recovery after stroke, calm and download the guide. It’s free.
Kate 36:10
When I go back online, and people talk about, you know where they’re at. I’m like, I’m not there anymore. I’m not feeling angry, or I’m not. I don’t want to talk about certain aspects of my stroke, because I don’t feel that way anymore. I’ve passed it. And the good thing is, I got there myself.
Kate 36:34
And yeah, I don’t need to go there anymore. I know, some people are doing like, informal chats and groups on other forums and in groups and things. But I just don’t need it. Because I’ve sort of healed within myself. And I’ll tell you what this acceptance stage doesn’t last, you know, like three weeks or something.
Kate 36:59
It continues to grow. And I’m like, oh, my goodness, I’m healing in so many other areas. And Wow, you know, I’ve had a pretty awful relationship with my mother ever since I had the stroke. As soon as I had a stroke, our relationship just took a nosedive and just became really bad.
Kate 37:22
And she was just angry at me. And just in the last, about months? It’s gotten really good. And I’m like, wow, where did that come from? And there’s a few other things. And I’m like, that’s because of the acceptance.
Kate 37:40
So the acceptance stage is like, such a growth stage. So I’m actually writing a book on the grief process after having a stroke, or any kind of injury, because it’s, it’s been such a powerful experience for me. And it’s such an area of growth, but it’s a process and it’s bloody worth it.
Bill 38:11
Before we talk about the book that you’re going to write, we’re going to be talking about the book you’ve already written so but just before we talk about, “Beyond Stroke Living Independently With One Arm” before we talk about that, I want to go back a little bit to the overcoming grief part. And becoming fully accepting of your situation. How long ago did that happen? I missed on the timing. When did that happen?
Kate 38:46
Five or six years ago, 6 years ago, yeah.
Bill 38:49
Okay. And it took you 25 years to get there. But you’ve got there, right. So this is the brilliant part of it, you did it all on your own. Now, why I wanted to mention that was because imagine if you had some support, and you were able to go through a different process towards fully accepting things, you might have got this sooner.
Bill 39:13
So what I’m saying to the people listening and watching is that you can get to acceptance sooner with support and with counseling and with some kind of a therapy that works for you. So I’m not sure what that is. I’m not sure how you’ll find that. But just know that with support, that timeline can shrink.
Bill 39:35
And for me, I got to acceptance pretty quick. I think, well, the one thing that I really, truly needed to accept was that I might die. And once I had done that, I had that shift as well. And I was then able to see the world differently, and then other things became possible.
Bill 39:53
Podcast, speaking about it, all the things that I’m doing now all began possible because of the acceptance part of it. So I didn’t stay in my poor me space very, very quickly. But I was also at counseling on day seven, pretty much I think, or day 10 after the first bleed in my head.
Bill 40:15
So I was really proactive. And before that I was at counseling for a good number of years, I reckon I started counseling about eight years before my stroke. And that was just something that I felt like I needed to do. Because all the stuff that stroke survivors talk about not being understood and not being able to explain what they’re going through and all that I felt like that pre-stroke I was unable to have people understand me or I just felt alone.
Bill 40:47
Like weirdly alone in the world where I had everybody around me and everything. And it was everything was amazing. So I went and got myself into some counseling so that I could come to terms with all the challenges and all the stuff that I was feeling.
Bill 41:02
So you took 20, odd years, 25, 26 years to get to that point, we can shrink that time down with a bit of focus, and a little bit of support. Kate, the beauty of the fact that you did it on your own and say later on, you write a book about that stage for you. That’s what it’s going to do that book, when people read it, it’s going to shrink the time that it takes for others to get to your stage sooner.
Bill 41:32
And that’s gonna be amazing to read. And I’d love to see that book, you know, available, that’d be great. But let’s talk about the book that you have already written Beyond Stroke Living Independently With One Arm. If you got a copy in there, can you just hold it up to the camera?
Bill 41:58
That’s it a bit higher. Perfect that’s it. I’ll make sure there’s links and everything and an image of it. On the show notes. It’s awesome. How long ago? Did you finish that?
Kate 42:11
I finished that. 2016.
Bill 42:24
Awesome. Tell me a little bit about what people can expect to find in the book. What’s it about?
Living With One Arm
Kate 42:30
So the book, in the beginning part of the book, I talked a bit about the reality of stroke, because sometimes people don’t tell you exactly what’s going to happen. So the doctors might say, oh, physios might say, you know, this is gonna happen when you leave.
Kate 42:48
But it’s not exactly real, because they haven’t been there. So I talked a little bit about living with stroke. And then sort of the reality of strokes or what the what how the world is going to react to you having a stroke, and how important it is to get your independence.
Kate 43:06
Because the carers aren’t always going to be there and your families might be frustrated with you. Or, you know, you’re not always going to get the help that you need. Then I go into a series of different topics, which I’ll just go back to the contents of doing things, one, tasks one handed.
Kate 43:31
For example, we’ve got things in the kitchen, personal care, opening containers, food containers, specifically, by jars. You know how hot jars are to open. Things like that. I’ve got, like twist top leads and things like that. I’ll show you how to do that with these one hand and seals on bottles.
Kate 44:05
Okay, I’ve got around the house. Things like right, keeping a book still or writing on a piece of paper. So the paper doesn’t move to simple stuff like that. And I’ll give you really simple techniques. I’ve got children and babies in there. All different things like swaddling a baby and doing buckles and my boys you still like square so I’ve got some really great ideas and lifting large.
Bill 44:34
What about changing nappies?
Kate 44:36
That’s all in there that I’m lifting large objects. So we got that in there and just some recreation bits and pieces. So I’ll show you a bit I’ve got here. So I’ve just got some ideas of zippers and putting on a jacket is put On a jacket, me and they’re just really simple pictures. I haven’t gone to town with fancy stuff. And then what I do on the opposite page is I just put a really simple breakdown of description, which goes next to the pictures.
Bill 45:17
Yep. Yeah.
Kate 45:19
And there’s tons of them. I got, I got a whole book. Here’s the nappy swell. So I’ve got a describe about the pullups. Yeah, and I talked to people about kids in pull ups, as soon as I can eat, we’ll just you’ll change your life. Yeah. And unless the description which goes next to it.
Bill 45:40
Yeah, fantastic. It’s such a, it’s such a great idea. It’s such a handy thing. And I can see that it’s really easy to read the text is quite a good size. There’s not a lot of texts not overdone. It’s just really, step by step seems like procedural manual.
Kate 45:58
I thought because I know, I had a lot of problems with with reading, after strokes, the following words and texts. So that’s why I’ve kept that quite simple for anyone with with reading, and challenges understanding words after they’ve had a brain injury. Yeah, I’ve had the same problem.
Bill 46:17
Now the same problem with reading. So books that are very spaced out and the writing is quite big, it tends to make my brain not get so tired. Yeah, I really appreciate that
Kate 46:30
part of it. Oh, the other thing, so it’s got nice big words, nice big text on the front. Not too many colors. Last year must be words and point form. And the other thing is, it’s spiral bound, spiral bound. So it’ll sit nice. Oh,
Bill 46:49
I love we thought of everything you showed me was awesome. Since I spine to worry about it’s going to fold back and it’s going to be really comfortable to hold in one hand and read and
Kate 47:04
Yeah, well, you don’t even need to hold it. With one hand, you can just put it on the kitchen table. Why can’t you run about? Or whatever.
Bill 47:11
You can stand it up?
Kate 47:13
there anything, whatever you want. You don’t have to hold it. And then you stop because you’ve only got? No. We thought of every trick.
Bill 47:22
Fantastic. It’s such a great idea. And it’s available online. Where do people buy it if they want to grab it?
Kate 47:29
Yeah, so it’s available in two forms. So you can buy it off ryanpublishing.com.au. And I’ll give you the link to add for that. And that’s the hardcopy version. And for E-Book, you can buy it off all the normal platforms like booktopia, and Amazon. So far, I’m not sure what the other ones.
Bill 47:55
What I love about ebooks is again, you can get it, you can print it off, and you can take it down to your local binding store, whatever they’re called in Australia, it’s office works. I’m not sure what they called overseas.
Bill 48:08
And they can just pull one of those ring binders on it for you as well. And you can use it in the same format.
Kate 48:15
I don’t know. I don’t know about any of that technology stuff.
Bill 48:20
All right. Well, if it does work, well there you go, it works. If it doesn’t, well, it doesn’t I don’t know, because I’ve done that before for some books, where I’ve bought a PDF version, and then bound it in that way. And it really makes a big difference to me as well when I’m using it.
Bill 48:37
Not that I have trouble using both my arms, but it just makes a big difference when I’m using a book. And I don’t have to worry about destroying, you know, the binding. I don’t know. It’s weird. I hate getting a brand new, perfectly crisp book and then bending it back.
Kate 48:54
I’ve got some tips for that in my book as well.
Bill 48:57
Awesome. All right brilliant! How long did it take you to put together?
Kate 49:05
It took me about six months to write it. Probably because I was going slow pretty slow and just enjoying my freedom because the kids were at preschool and stuff like that. I took my time and then probably took about two months to take the photos but again, I was just taking my time with that as well.
Bill 49:30
So you got through it. And it was Ryan Publishing was the publisher. How good was it or easy was it to find the publisher for a book like that?
Kate 49:43
It was pretty straightforward because the publisher is actually my father.
Bill 49:50
So basically, was your publishing this book, mate?
Kate 49:54
No, I actually looked around for a lot of different publishers I forgot I kind of forgot that.
Bill 50:02
That your dad’s a publisher?
Kate 50:04
Yeah.
Kate 50:06
I just, I thought, Oh, you know, I want someone young and savvy and everything. And then my dad was visiting me and the kids and he said, I’ll do it for you make it look great. It’s been the best thing ever. And he’s in Melbourne.
Bill 50:26
That is hilarious. I’m in Melbourne, I’m gonna go and look him up. And when I go into his website, he’s got some really cool books on there, and some of them are very Australian, you’ve got Beauregard of Ballarat. My God, I can’t believe that. I’ve never heard of this before.
Bill 50:48
But it’s really amazing to see. So he was able to take you through that process where you got your book up and running within around six months and get it published. And now it’s also available online. And that’s really a helpful tool for people that are going through life, either because of a stroke or some other reason with not being able to use both arms.
Kate 50:53
It could be anything this book are directed at people that have had a stroke, because you know, that’s my experience. But I mean, it can be for anybody.
Bill 51:27
Amputees.
Kate 51:28
Amputees we’ve sold a lot to the Amputee Association in Queensland. It can be someone with arthritis, MS, carpal tunnel syndrome, people post-surgery, sports injuries. There’s another condition I forgot what it’s called, but it affects the fingers.
Kate 51:45
You know, I’ve had a lady who had an injury to her thumb, who bought my book, and it was only very minor, damage to her nerves. And I mean, the list is endless, you know, broken arms.
Bill 52:01
Yeah. Okay, that was really helpful, actually.
Kate 52:04
Yeah. So um, and that’s the purpose of the videos as well. So there’s, you know, someone who’s had a brain injury, which only affects their arm or their hand or something like that. So yeah, that’s the purpose of the video so it can reach a broader group of people, rather than just people that have had a stroke?
Sharing Your Story And Helping Others
Bill 52:29
Isn’t that amazing? When you think of a solution for a problem, you always think about how it will solve your problem, and you’re in your situation. But then everyone else says, Oh, my God, that can help me and I can support show that to somebody else who I know who is not a stroke survivor.
Bill 52:44
And that’s the beauty of it is you do this, really, it sort of stems from your need to solve your own problems. And then it’s like, hey, by the way, these problems are solvable. How about, I write this book and put it in a format that everyone can get to it. And maybe you can apply it in your life, it’s brilliant.
Kate 53:04
almost every single person that has heard about my business says, I know such and such a person, or my mother has had a stroke, or I have a wake-up, almost every single person has said, they know someone who could who has an injury to their arm, it’s an it’s absolutely amazing. Or I know three people that could use this book.
Bill 53:29
How does it make you feel?
Kate 53:31
Oh, it makes me it makes me feel that I’m on the right track, because when I was writing the book, I had a friend in my life. And I said, I don’t know if anybody’s going to read this. And, and the only way of keeping me going was having friends in my life, just to bounce ideas off and say, just give me the confidence to keep going.
Kate 54:04
So okay. Just do one bit, as much as I can, with just the idea that maybe one person will buy it. And then I have 500 people buy it. And you know, two more people buy it, and 34 people buy it. And it’s just great that it is changing people’s lives. I wrote the book because I had a lady who was working with us and she was saying how much her husband would benefit from the book.
Kate 54:34
And she said, it really needs to be this kind of resource really needs to be out there for people. And I was like, if this one lady is saying how much it’s needed, he’d had a stroke. Or then it needs to be needed for other people. And my mother is actually a physio therapist, and she was originally the person who said to me, about 15 years ago, I cannot undo this jam jar can you do it? Okay, and I just went bang, bang with a knife.
Kate 55:17
That’s how you do it you open it, turn it upside down and use a knife to flip the lid open. And she said, if you put that in a book, it would sell. And I just kept that in my brain for 15 years. And she was right and this lady that was working with us was rad as well.
Bill 55:44
Absolutely. Doubt’s the bigger killer of ideas than anything really. I mean, that we have to overcome. I almost didn’t do the podcast, I started it. And then I stopped it and then didn’t commit to it. And that because I was doubtful that people listened to it. I thought I was gonna get judged and given a hard time and all this kind of stuff.
Bill 56:06
And I was like, what an idiot. Looking back now, what it was, was just me being afraid to put myself out there, I’d never really done it before. I was afraid to have to respond to people if they came, if they decided to be negative, I was afraid that that would happen. And then what would I do? Like how would I overcome that when all I’m trying to do is something good.
Bill 56:32
So I almost didn’t do it. But I also couldn’t bear the thought of not doing it because I used to get messages from people going, that was a really helpful episode, or I still do every day. And that just makes it impossible for me not to do this podcast. So forget about the doubt, overcome your fears.
Bill 56:51
And just push through anybody listening? Who’s had an idea to do something, just do it anyway. And then put it out there. And don’t worry too much about what you think people will say or do because it’s probably wrong.
Kate 57:04
I think that was my biggest barrier as well. I was thinking people say, Oh, the pictures are bad. Are this is stupid, this book? And I haven’t had one single negative comment. They’ve all been positive. It really amazed me actually. It’s been a blessing.
Bill 57:24
Yeah. Well done good on you. And I just had a thought. Do you reckon your mum has also got to that point of acceptance? And that’s why you guys have had a good turn in the relationship?
Bill 57:38
Possibly? I’m not sure maybe.
Bill 57:45
Yeah. Just put it out there. You didn’t have to have an answer for that. It’s just something that popped up into my head. And I’m thinking about parents, how little resources you had as a child who was going through that, imagine the lack of any support or help that they also, didn’t have.
Bill 58:03
And they did the best they could with the resources that they had available to them. And that was still wayfully short of actual any real true support. And then your mom was angry at you thinking, maybe, you know, I’m not sure that she was angry at her daughter for being unwell.
Bill 58:27
But she was probably angry at the situation just like a lot of people experience anger in their own challenge. And she wouldn’t have had any idea, any clue how to actually deal with that whole situation. And imagine that being a parent because I’m a parent. And imagine that, I mean, you just don’t want to even go down that path.
Kate 58:49
Yeah, yeah. The whole family. Even friends, exactly. It’s kind of a what’s the word? It’s sort of self, is that a word? Self combusts? And, and like an oven.
Bill 59:15
Yeah. It’s a lot of pressure. A lot of stuff going on, and it just bursts and that’s it that people aren’t coping and then they can’t.
Kate 59:24
Yeah. People turn to alcohol and all the other things like hurtful feelings, remarks, that sort of thing. Abuse, not that we really had that, but because they can’t cope with the reality of what’s happening.
Bill 59:42
Yeah, it’s emotional. All of it is emotional. And it plays out in these other weird strange ways. And if you’re drinking, and if you’re taking drugs, or if you’re playing out these things in a hurtful way, maybe you’re just trying to mask or process, we’ll deal with emotions that have been dealt with really.
Bill 1:00:04
And that’s why I kept sort of going back to the counseling part and why it’s important for people to look for solutions to things like anger, and try and decrease the amount of time that they stay angry. Because just similarly to what you said, there’s a lot of time that’s kind of wasted in that space.
Look For Solutions
Bill 1:00:25
Like, if you’re sitting there being angry, and cranky, and all that kind of stuff, you’re not really able to see what else is possible, just like it lifted for you, when you had acceptance, you saw all this stuff. So I think what I’m just trying to get at is encourage people to look for solutions, rather than staying the problem, the solution is really going to set them free isn’t it?
Kate 1:00:51
Well, I think the solution is just to keep going. And, I also found that rather than trying to force their recovery, I found that it, I didn’t have to do much. It, you know, I didn’t have to try and get better. I didn’t have to try and heal myself. I didn’t have to try and you know, a lot of people that think I noticed on some social media groups.
Kate 1:01:30
What are they saying? They’re saying things like, Oh, don’t stop, I can pick myself up. But I but my opinion is actually Yes, stop, have a break, if you’re feeling down, because they’re sort of saying, if I’m feeling sad, I’ve got to pick myself up straight away. And, and I’ve always got to be try try try to like, work on my recovery. But I’m like, No, give yourself a break. But that’s my personal opinion. Because that’s what I did.
Bill 1:02:09
That’s also working on your recovery, giving yourself a break, and doing nothing.
Kate 1:02:13
Right! That’s what I did. It didn’t mean that I stopped doing physio therapy, or, because I’ve done physio therapy the whole way since having my stroke up until basically, when I had my kids, when I had my twins, since having the twin boys, we haven’t really had a lot of time.
Kate 1:02:37
But like a lot of people are saying, No time for a break, gotta gotta keep moving, keep doing the recovery. But I’m like, just give yourself a break. And that’s that’s when the healing occurs. And I found that in getting through that depression, anger stage. Sort of, it happened by me really not doing much.
Bill 1:03:02
But that’s the counterintuitive part of it, it’s looking for the solution. That doesn’t mean the solution is to do more or be more fixed more, it’s sometimes the solution is do less, be less active, be less out in the public, sometimes that’s the solution.
Bill 1:03:21
So it’s exactly what you’re saying. it’s counterintuitive. It’s not always what you think it is, it might be something that you didn’t expect. So give everything a try. And every feeling is valid, right? Every feeling is necessary to experience and go through the upset the anger, the crankiness the depression.
Bill 1:03:42
And some of them are not pleasant, but they are valid they need to be experienced and expressed and then kind of given the attention that they are suggesting that they need from you. So once you allow yourself to have those feelings and express them and feel them for all the good or all they’re bad. That’s what the purpose of them.
Kate 1:04:07
If you feel like eating a packet of Tim Tams and crying and getting into bed just bloody well do it don’t go out and and exercise for like go around the block and or catching up with friends for dinner. Like if you have to take care of yourself because you have grief coming up do it go to bed have a packet Tim Tams and watch some Netflix or cry cuz you feel like crying.
Bill 1:04:41
But don’t do the Tim Tams a lot? Not a lot because you’ll put on a heap of weight.
Kate 1:04:46
Maybe not always.
Bill 1:04:47
Or once in a blue moon yeah eat a whole pack of Tim Tams if you have to.
Kate 1:04:53
But you know what I mean? Like it’s about caring for yourself as well.
Kate 1:04:58
Because there’s so much innocence Sorry. Now where are we, where we got to look good. We’ve got to have the great photos for Facebook and if you look at my photos, I rarely post on Facebook, I might post a couple of my kids doing something great. I’m most of the time just caring for myself because I’m I know what that amazing stuff that has has achieved for me.
Kate 1:05:27
So yeah, I really encourage anybody that’s listening to I don’t know if counselors are saying that to do this and that, but it’s not about like the process after having a stroke is not about getting up and doing more exercise or trying to heal. It’s just about taking care of yourself one day at a time.
Bill 1:05:49
Yeah, I love that. Kate, on that note, I think we might end it here. Thank you so much for being my guest on the podcast. Thank you so much for the book that you’ve written. I’m going to have the show notes for everybody with the links so that people can find that and get a copy if they need to.
Bill 1:06:05
I’m looking forward to the next book. Make sure you let me know when it’s done so that I can get you one or we can talk about that. Good luck on your recovery on your ongoing recovery and well done on getting through that barrier and finding acceptance.
Kate 1:06:22
Yeah, thank you so much, Bill. And yeah, hope we speak again soon.
Bill 1:06:27
Thanks so much for joining me on today’s recovery after a stroke podcast. Do you ever wish there was just one place you could go to for resources, advice, and support in your stroke recovery?
Bill 1:06:39
Whether you’ve been navigating your journey for weeks, months or years, I know firsthand how difficult it can be to get the answers you need. This road is both physically and mentally challenging.
Bill 1:06:50
From reclaiming your independence to getting back to work to rebuilding your confidence and more. The symptoms don’t follow a rulebook. As soon as you leave the hospital you no longer have medical professionals on tap.
Bill 1:07:02
I know for me, it felt as if I was teaching myself a new language from scratch with no native speaker in sight. If this sounds like you, I’m here to tell you you’re not alone. And there is a better way to navigate your recovery and build a fulfilling life that you love.
Bill 1:07:19
I’ve created an inclusive, supportive and accessible membership called recovery after a stroke. This all in one support and resource program is designed to help you take your health into your own hands.
Bill 1:07:32
This is your guidebook through every step in your journey from reducing fatigue to strengthening your brain health, to overcoming anxiety and more. To find out more and to join the community just head to recoveryafterstroke.com. See you next time.
Intro 1:07:47
Importantly, we present many podcast designed to give you an insight and understanding into the experiences of other individuals opinions and treatments, protocols disgusting any podcast or the individual’s own experience and we do not necessarily share the same opinion nor do we recommend any treatment protocol discussed.
Intro 1:08:04
All content on this website at any linked blog, podcast or video material controlled this website or content is created and produced for informational purposes only and is largely based on the personal experience of Bill Gasiamis. The content is intended to complement your medical treatment and support healing. It is not intended to be a substitute for professional medical advice and should not be relied on as health advice.
Intro 1:08:26
The information is general and may not be suitable for your personal injuries, circumstances or health objectives. Do not use our content as a standalone resource to diagnose treat, cure or prevent any disease for therapeutic purposes or as a substitute for the advice of a health professional.
Intro 1:08:41
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Intro 1:09:06
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