When migraine headaches led to a brain scan, the last thing Maddi Neibanck expected to hear was that she had a ticking time bomb in her head in the form of an AVM. Her decision to remove the AVM at age 20 would change her life forever.
07:45 Obstacles are Opportunities
14:20 Stroke at a young age
22:22 Finding your passion after stroke
28:44 Fully recovered mindset
38:01 You’re not alone
42:25 Post-stroke recovery progress
To me, I’m not sure if you feel the same recovery is all a mindset like it’s, it doesn’t matter so much like what we can or we cannot do. What matters is the attitude we take in like doing it and if we embrace a fully recovered mindset, which is what I write about and like to me that has been a transformative thing is embracing fully recovered mindset. Like maybe I can’t do everything like how I used to, but I’m going to find different you know, I just need to find different ways to be able to accomplish the tasks that I want to and that’s okay like it’s fine if I’m not able to do everything the exact same way like I could before.
This is recovery after stroke with Bill Gasiamis, helping you go from where you are to where you’d rather be.
Bill from recoveryafterstroke.com. This is Episode 103 and my guest today is Maddi Niebanck. Maddi remembers her first migraine at age seven and when that happened, she never expected that the cause of that headache was a small birth defect called an arteriovenous malformation.
A small bundle of faulty blood vessels that can bleed and cause seizures in some people Maddi’s decision to have the faulty arteriovenous malformation removed from her brain would almost kill her and change her life forever. So stay tuned for this episode. It’s another highly inspiring one.
When you get to the end of this episode, whether you’re watching on YouTube or listening on your favorite podcast app, please do me a favor and share this episode in other groups you’re hanging out in. This will help someone that is going through a tough time at the moment perhaps feel a little better about the journey they are on.
Also, if you feel this podcast makes a massive difference to you and the stroke community, please do me a favor and give the show a five-star review on iTunes or wherever you download your podcasts from. Finally, I have recently put Everything that I’ve learned about what is important in stroke recovery into a course called 10 steps to brain health for stroke survivors, and module one is now available at recoveryafterstroke.com.
This is a course that is included as part of my recovery after stroke coaching program that will help you overcome fatigue, reduce anxiety and support your memory amongst other things. The 10 step program has been created to complement any medical interventions and works in conjunction with any other physical therapies that you are undergoing.
So if you’re a stroke survivor that wants to know how to heal your brain, overcome fatigue and reduce anxiety, this course is for you. If you feel like there is not enough support. After you leave the hospital and you are afraid that your recovery will go backward, then this is where I can help. While you’re participating in this course I will coach you and help you gain clarity on where you currently are in your recovery journey.
I’ll help you create a picture of where you would like to be in your recovery 12 months from now. And I will coach you to overcome what’s stopping you from getting to your goal. Right now, for anyone that’s interested in learning what recovery after stroke coaching is all about, you get a seven-day free trial to decide if it’s the right fit for you. The price will be increasing on July 120 20, by more than double.
So take advantage of the seven-day free trial now by clicking below if you’re watching on YouTube, or by going to recovery afterstroke.com/coaching if you are listening online, and now it’s on with the show.
Maddi Niebanck welcome to the podcast.
Thank you for having me.
Hey, Maddie, before we get into the conversation proper, can you tell me a little bit about what happened to you?
In May of 2017. Three years ago, basically, After I had just finished university I had a hemorrhagic stroke well, while I was in the hospital, from an AVM, which is an arteriovenous malformation, so this malformation of my brain that I knew that had ended up causing a stroke.
For me what happened was I was in the hospital, because I knew that I had this since I’ve had migraines, terrible debilitating migraines since I was a young child. And I decided that I would go in for brain surgery. And when I did, they did a pre operative procedure, which caused a blood clot, which burst ultimately causing me to have a stroke and an emergency brain surgery.
And so the brain surgery happened. And when I finally woke up from a coma, I was completely paralyzed on the left side of my body. So I’ve had to learn how to do most things that I once took for granted over again, which has been a process I’ll tell you that much.
So you had an AVM that you know about, which is very rare because most people don’t know they have an AVM correct. As a result of the headaches that it was causing. You decided to remove the AVM to decrease the headaches and then you had some operative complications, which meant that complication
had a stroke, correct? Yes, I did. So he’s lucky in the sense that I knew about the AVM like going into it. But I didn’t think that it would end up causing me to have a stroke and then having to go through all this intensive therapy all over again. So I didn’t think that I don’t think anyone thought that that was going to happen. But honestly, I just very grateful for my life.
Your Instagram handle is maddistrokeofluck. Tell me what’s the thinking behind that?
Well, so funny enough. For the first I would say two years, I was not remotely even considering starting an Instagram and like sharing my story and connecting with other people because I was, I guess you could say not in the best headspace so to speak, and kind of didn’t really understand like, why did this happen to me like, I don’t want to have to go through this.
Like I The last thing I wanted was to share my story with other people and connect with other survivors who’ve gone through something similar. And then it was it wasn’t until like two years after my stroke. So about a year ago, I decided that I think gone through a lot of rehab like on my arm just to get my walking back my arm back.
And now I feel like I’ve learned a lot of things over these past two years that I kind of wants to share with other people and then also in turn, learn strategies from other people who have had a stroke. So I was more willing to interact with other members of the brain injury community then so I guess the Instagram to answer your question was started a year ago. And I started that just because I wanted to share my story and I wanted to connect with other people and in turn, learn from others.
Yeah, but you could have had an Instagram handle which said, you know, stroke bad had a bad stroke, bad, you know, stroke is terrible. But you chose that stroke of luck, like, you know, you combined the terrible part of stroke with a lucky kind of experience. So like, how do you did you get to that point where you feel that it’s kind of there’s a luck element to this? Like, what’s that about?
So after I had the stroke, I decided I want to connect with people who are already within my network, who I feel like to me are inspiring. And I want to, you know, just take this time where I’m not working a full-time job to learn from other people who I find, you know, and are an example to me. And so, just like maybe five months after the stroke, I reached out to a friend of mine, who is a crazy ultra-marathon runner has run the world marathon challenge that world records for running like super crazy guy, whatever I reached out to him like, we need to talk.
Obstacles are Opportunities
And so I told him about what happened. And he told me one of the most profound things I think I’ve ever heard, he said, Maddie, obstacles are opportunities. And I just sat there I was like, oh shit, like he’s right obstacles are opportunities.
Like you could view what happened almost dying, all that stuff is like a terrible, traumatic experience, which was don’t get me wrong, but at the same time, like, I also am facing, I have an opportunity to view that kind of as I wish, you know, and like if I choose to turn this into something good to view it as an opportunity like that’s on my prerogative.
Every single moment of every single day that we live presents us with a unique set of circumstances and choices to make. And we get to decide how we want to live our lives and I guess I just soon after the stroke, I decided like, I want to make this something good for my life. I don’t want to dwell on you know, the bad things that have happened to me like I want to transform this tremendous obstacle into an opportunity for myself. So I try and view my life as a blessing now.
That’s a beautiful way to view your life. I mean, it was a blessing before and I agree with you. It’s about mindset, isn’t it? And it’s about choosing what kind of mindset you want to focus on and then going after that mindset.
And the more you focus on a mindset and choose a mindset, like a growth mindset, in your case, there’s an amazing book by Carol Dweck that talks about mindset and it talks about the growth mindset. And then it talks about the negative, you know, mindset. And, if you focus on a growth mindset, you’ll find reasons and opportunities and experiences that helps support that growth mindset.
If you focus on the other one, you’ll get feedback and information and, lots of data for a terrible mindset. And both mindsets are going to use roughly the same amount of energy to bring to fruition it just depends on which one you choose. So if you switch over to a growth mindset, then what can I do? How can I grow from this? What can I learn from this, then you’ll start learning, you’ll start growing. And you’ll start finding more and more ways to learn and grow and make this a stroke of luck, rather than a stroke of terrible situations, you know.
Right. It’s all in your perspective. Definitely.
Now, just to give people an understanding, because it’s difficult for me to convince a lot of people about what I just said because when they look at me, it doesn’t look like I had a stroke. I do have deficits and people can see them. So they judge me as a person who got away with it. And there’s no real ongoing issues. But you are somebody that does look like they had a stroke. Tell me about the deficits that it gave you.
So for me, I mean, I feel very lucky in the sense that the main deficits that I suffered the result of my stroke are physical, so they are deficits. You can see, I’ve gotten so much better in terms of my walking like, I don’t use a cane anymore. In fact, I just look like I have a minor limp and people will ask me, oh, did you have like a sports injury?
You know, like, to me, it’s a big deal that people don’t immediately assume that it was like a neurologic thing. And the fact that they think that it was just like, Oh, she hurt her knee, or she hurt her ankle, whatever. And that’s not the case. So I feel like I’m kind of happy that people don’t immediately assume the worst anymore, but I do.
I do walk with them. I don’t use a cane and I don’t need assistance to walk, but it’s just like a little bit of a limp, and then my left arm and my left hand don’t work as well as they used to. So I can do some things with my hands. Like, unfortunately, I was a left-handed person. I am a left-handed person. For me not having my left hand is like really challenging, but I’m doing More exercises and getting to a point where I can use my hand to help with some things like opening doors and jars.
And, you know, I’ll practice like trying to write my name with like an adaptive pen or eating with an adaptive fork. So I do, like try and do a lot of things on another main challenge that I guess, that I’ve had, since the stroke for me has been my vision I’ve had really bad like, from as a result of the stroke, I lost the majority of the peripheral vision on my left side.
So my field of vision is very small. And, so basically, if I’m not looking straight at something, I don’t see it, you know what I’m saying? And so like, that was a weird adjustment for me to make like realizing, oh, a lot of times in therapy or my parents would say like, oh, Maddie like there’s a person over there like you just ran into them like, did you not see them?
I’d be like, no, I didn’t see a person there obviously like, what do you do mean? And my mom would always yell at me like, you have to turn your head. There is a whole world happening on that left side that you’re just not seeing because you’re not turning your head. And so that was like, probably one of the biggest adjustments for me is having to realize like there is all this stuff going on.
And I have to remember like, okay, turn your head and actually look over there because just because you’re not looking doesn’t mean that there isn’t stuff over there so that, like, apart from the physical like my visual deficits have been huge. And I’ve been to have struggled with double vision. So I actually had like an eye surgery to work on that.
Has that rectified the double vision?
Yes, I had to wear it after a stroke. I had to wear prism glasses because I had double vision in my eyes. And then like, it was two months, three months, two months ago, I had a surgery which basically was meant to correct the alignment of my eyes and then also fix the double vision and it’s helped tremendously so while I still have a bit of the like the residual a double vision I see much much better and I’m I can work contact. So that’s been a huge advancement.
How old were you when you had a stroke?
Stroke at a young age
I was 22. So it was a week after I had graduated from university actually.
So for 22 years, everything is going relatively well except for these migraines that how terrible where these migraines.
Oh, horrendous, like absolutely debilitating. It started when I was I can I vividly remember I was seven years old. I was in my classroom like with my teacher and all of a sudden I got this hitting pain like in my head. I was like, I have to go to the nurse and from then it just started like and I would basically every month or so I would get at least one migraine, debilitating had to leave school, go home and just sleep because no medicine helped it.
And eventually, it culminated in migraine when I was 14 years old. That said, 24 days, so I had to go to the ER and they finally the doctors are finally like, okay, you need an MRI, like, let’s get this checked out and see if there’s something going on. So we did the MRI, and then that’s when we discovered that I have this arteriovenous malformation in my right occipital lobe, and they didn’t the doctors didn’t say like, okay, that’s definitely causing the migraines. They just said we need to keep an eye on this. Like maybe you should seek some opinions of like a brain surgeon and see if you need to do something about this. And then so that’s what I did.
So you took quite a number of years to get to that point where you decided to have surgery, did the migraines persist, and as a result of that, you got to the point of saying it’s most likely this AVM, we should do something about it.
So actually, I decided not because of the migraines per se because like I said the doctors they couldn’t say off the bat like, okay, you’re getting these terrible migraines because of this thing in your brain. Like, I guess there was no way to know that. But they did all of the brain surgeons that I consulted with, they all told me that knowing that you have this big AVM in your brain with each year that you live is an increased chance of bleeding and rupturing causing a stroke and you dying.
So, I mean, yeah, whatever. I was, like 20 years old when I finally decided that I wanted brain surgery, but basically that was because I really didn’t like the idea of having this ticking time bomb in my brain that could explode and like maybe I could die like, okay, who knows, maybe it wouldn’t do anything but like, maybe it would do I want to run that risk. And so that’s why I ultimately decided that I was going to have surgery.
So I had an AVM in my head and I didn’t know that I had an AVM in my head.
You didn’t know that you had yours?
No, and most stroke survivors who have had an AVM ruptured didn’t know that they had one. What happened was at 37. It just decided to bleed and up until then, I hadn’t had migraines. I hadn’t had any reason to believe
You had nothing to think about it.
Nothing there is to believe there was anything wrong. So I just went on life as per normal and then and then it bled and a lot of the people I’ve interviewed have had AVMs there’s been so many of them that have been really seriously challenged by the AVM.
And of course, I’m only talking to the ones that have survived. So I don’t know if there’s a lot of other people out there who have had an AVM bleed and as a result of that, they haven’t survived. I’m sure it’s the case but it is a big deal for a 20-year-old to make a decision like that. Did it solve the issue with the migraines Have they gone away since the surgery?
I am very very lucky in the sense that it did. I haven’t had a minor since like, the migraine and I guess that happened when I had the stroke. So, in three years I have not had a migraine, which leads me to believe that the migraines are caused by the AVM, which I’m lucky enough that it was successfully removed in the emergency brain surgery. So I don’t have that in my brain anymore. I just have a bunch of like problems because of the surgery, but I don’t have the AVM and I don’t have migraines.
Yeah, so that the reality is that the AVM can’t bleed anymore, I can’t catch you out is so that is definitely a very important thing. And it’s something that you’ve resolved and that won’t ever happen again. So that is a great thing. And I know this is gonna sound a bit odd or whatever, but at 22 with some deficits, you’ve got a really long time to heal and recover from those and work away to get used to how your body now works.
So you’ve got a bright future ahead of you. And that’s a really good thing, even though you’ve got these challenges. So I suppose, in a way, I think you did the right thing. You made the right decision to remove the ABM. How do you feel about that? Do you feel like it was the right decision?
I do. So sometimes I think like, okay, if I had decided not to get this removed, like, okay, maybe I would have been fine. Like I would have gone on to do the job that I thought I was going to do and moved after I graduated, whatever and like, maybe everything would have been fine. Maybe I wouldn’t have had a stroke, but maybe 20 30 40 50 years down the line is when it finally would have ruptured and then I would have, I think less of a chance of recovering as well as I have.
Yeah. So what were your plans before the stroke, what were you going to do with your life?
I had, like I said, I had just graduated college right before the stroke and I had a job all lined up, I was going to move up. I went to college in Washington, DC, I went to Georgetown University. And I was going to after I graduated, obviously, get the brain surgery, and then move up to Boston, Massachusetts, and I had a job all lined up there that I was pretty excited about.
Ultimately, I wasn’t able to do that. Because after the stroke, I had to go through intense rehab could not work and obviously cannot go move to live on my own. And so I had to reevaluate. I didn’t work for a while. That’s when I ended up writing my first book. And then actually a year and a month ago, I started working full time, so that was like a big step forward for me.
What did you study?
I’d double major of Spanish and justice and peace studies with a certificate in entrepreneurship.
And the job that you had lined up what kind of work was that?
It was in sales.
So you couldn’t go to work. And a couple of years later, you’ve done the recovery, and you’re feeling better. So now you are back at work for the first time. What kind of work are you doing now?
Yeah, so I am I started working, like I said a year ago, full time, and I actually work in reinsurance. reinsurance is insurance for insurance companies, basically. And so I’m in the underwriting side of that, and I really, really like it for me, what’s really cool thing about it is, it’s a company that is based in Madrid. So it’s a Spanish company. And so my boss is Spanish, I get to use my language skills I studied in a university like on a daily basis, which is really really cool. And like the work gets really good, complex, but good.
Yeah. That is great. That’s good that you found your feet in an area where there was some interest. Also, you’ve been busy writing books now. How does a 20-year-old have the focus and to write a book, but also, you’re recovering from a stroke? So where do you find the time to write a book? This is really cool.
Finding your passion after stroke
So I’m going to be honest, like, after having a stroke. I had, I told you that I had a bunch of conversations with people who I found to be an inspiration in my life or like people within my network, who I really admired and looked up to. I had one of these conversations, maybe like, three, or four months after I had the stroke with my favorite college professor from Georgetown.
I told him what happened, whatever. So we knew about the stroke and he basically told me, Maddi, you have a very unique opportunity here talking about turning obstacles into opportunity. He said take this time where you’re not working full time, like you thought you would be, you’re focusing on your recovery. Take this time, the free time, you have to learn about something that you’re passionate about. And you know, to turn that into something productive, like writing a book would be the way to do that.
And so I did a bunch of brainstorming, and I decided, okay, what are some things that I’m interested in that I would like to explore in more depth, but that I’ve never really had the time to. And I just did that for me was fashion. And so my first book I wrote after my stroke, like, it came out in 2018. So a little bit over a year after the stroke a year and a half per stroke.
I interviewed people within the fashion industry, did research on my own and then eventually wrote, put all of my findings and interviews into a book, which I actually have right here. Can you see this Fashion Forward. Today’s culture shapes tomorrow’s fashion. So this is my first book. And the cool thing I think about it is that because I’ve read it after my stroke, I was obviously in that mindset of like, I’m using this book as a tool in my recovery.
Like, for me the act of setting up interviews, talking to people planning out my schedule, like, okay, I’m going to write on these days of the week, like the whole thing of planning, executing, interviewing and writing was like, therapy to me. It’s like a form of cognitive therapy. So I felt really, you know, grateful to have been told by my professor like, oh, you should use this time to do something productive and decided to write a book.
And honestly, writing a book for me has been like the best form of therapy because it’s really helped me in terms of like getting back my, ability to plan to organize my day to all of the skills that were kind of affected my attention to detail, everything from a cognitive sense that was affected like I got to work on and it didn’t feel like therapy because it was something I was interested in.
Yeah, man, that is awesome. I mean, I know exactly what you mean about having something to focus on. That’s why I started the podcast, it meant that I connected people who were like me, it meant that I started to learn from them, it meant that I was sharing that information other people will learning. And it grew means so much and it meant that I had something to go back to when I felt up to it and I had energy and, it inspired me to keep going and to be a little better at managing my time to bring people on to help me because I can’t do this podcast on my own It takes a lot of time and therefore a lot of money.
And it interferes with other things that I do. If I let it can take over my entire life, but it’s caused me to find balance. So the podcast is done in my downtime. It’s done from home, so I don’t have to go anywhere to do it. All the editing is done online, you know, there isn’t anything that I have to do other than go into my room.
And therefore it minimizes the amount of effort that I have to put in it. So it’s been really fascinating for me to observe myself, eight years down the track, and see how this podcast has formed. And now we’re beyond the hundred episodes. So it’s really amazing, you know, so I’m quite proud of it as well. Now, the one thing you don’t have, though, and forgive me for saying that is you don’t have a lot of creativity when it comes to the book titles.
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 because you’ve never had a stroke before.
You probably do. Don’t know what questions to ask. If this is you, you may be missing out on doing things that could help speed up your recovery. If you find yourself in that situation, stop worrying, and head to recoveryafterstroke.com where you can download a guide that will help you. It’s called seven questions to ask your doctor about your stroke.
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, recoveryafterstroke.com and download the guide. It’s free.
Your new book is called fast forward. So the previous one was called Fashion forward this one is called Fast forward.
It’s a play on words, you get it because the first one is Fashion Forward. And this one is Fast Forward. Fast Forward a couple of years and see, like, for me, it’s like and see what I’m doing now, like when I wrote my first book to now, which is like, what a year and a half after that, look how much how much more I’ve been able to so it’s in a way like my second book, fast forward, the fully recovered mindset is in part memoir of my journey of the past three years how I’ve recovered, and you know, since I work on and, but more importantly than, like, how much I’ve recovered is about, like you mentioned, the mind set that I feel like helped me more so than like, any physical improvements I’ve made.
Fully recovered mindset
Because to me, I’m not sure if you feel the same. Recovery is all a mindset like it’s, it doesn’t matter so much like what we can or we cannot do. What matters is the attitude we take in doing it and if we embrace a fully recovered mindset, which is what I write about. And like, to me that has been a transformative thing is embracing this fully recovered mindset. Like, maybe I can’t do everything like how I used to, but I’m going to find different, you know, I just need to find different ways to be able to accomplish the tasks that I want to and that’s okay. Like it’s fine if I’m not able to do everything the exact same way like I could before.
So the fully recovered mindset, that’s an awesome way to approach life, however, that suggests that maybe there was something wrong with your mindset beforehand. Now, I’m not saying there was and when I say wrong, I’m not saying that there is such a thing as a wrong mindset. It’s just a mindset that either serves us or doesn’t. Tell me about your mindset before stroke. What was that like?
Right. So I mean, to be honest, I’ve always I would say, and I think people who knows me would say that I’ve always been like a pretty positive person. I definitely see the glass is half full kind of thing. But I just feel like that since I had the stroke like that, has amplified to an extent if you know what I mean, like, I feel like when I had the stroke, like there was no option for me to be negative and really dwell on what it happened to me like, yes, that could have happened. But I decided early on that I wanted to turn this obstacle into an opportunity. I wanted to see what I could do. And then yes, like you mentioned, embrace this fully recovered mindset and see kind of what kinds of things I could accomplish if I worked at it.
Yeah, that’s a great way to go about things. Now what is a fully recovered mindset to you so I’ll give you my version of what I think that is based on not knowing exactly what’s in the pages of your book. haven’t read it. We’re too far away for me to grab a copy right now. But I’m curious about, for me, a fully recovered mindset is that I can tell somebody, that asks me, how are you? How are you going? Regarding my stroke, my brain surgery, my learning how to walk again, I can say to somebody, I’m fully healed, I’m totally well, I’m healthier than I’ve ever been.
However, I still have left side numbness when I get tired, I start to lose my balance a little bit. I have fatigue that kicks in, at certain points of the day sometimes, you know, at around 4pm sometimes after that, if I don’t sleep well, it means I have a really terrible day the next day. The one side of my body is numb and colder and has less sensation. So even amongst all of that drama and challenge and issues, I still feel like I’m fully healed. I’m healthier than ever I’m fully recovered. Is that kind of how you see yourself?
It is. So actually the reason that my book is titled fast forward, the fully recovered mindset is because I had a conversation with another stroke survivor. Her name is Ella. She’s a habit coach and she had a stroke when she was young. And she said that for years after the stroke, like doctors would ask her, okay, how do you feel like how recovered do you feel? And she would say, like, Oh, I’m 97 98% recovered, but like, I’ll never be 100% back to like, how it was before.
And then she told me that she realized like, what am I saying, like, why am I saying to people that I’m 98 99 you know, percent recovered when like, I am still living like a very full life. I’m doing maybe I’m not doing it like how I used to, but I’m doing a lot of things that I thought maybe I wouldn’t be able to do again. And so for me like that is the embodiment of the fully recovered mindset is realizing you, maybe you can’t do everything like you used to. But that if that doesn’t stop you from living your life to the fullest and still getting a lot out of your life, then to me that’s fully recovered.
Yeah, I completely agree. I love it. The book took how long to write how long does it take to write a book? And how many pages is it?
So my first book, Fashion Forward, the fully recovered mindset took me nine months. And that is actually let me just look and tell you, I think it’s 213 pages. And my second book, fast forward, the fully recovered mindset. took me like 10 months. And that’s I think, 222 pages.
What’s it like to get your little baby that, you know is in pages? Just words all over the place? What’s it like to finally get that copy? You know, the fresh box, the fresh copy in your hands?
Oh, it’s amazing. It’s so nice to see like to have this in my hand and hold and be like, I spent 10 months of my life working on this and like, now it’s a real, it’s a real thing like this actually happened. And now I want to just get it out to the world and have a lot of people know about it.
Yeah. Can you jump to the index and just read to me what a couple of the chapters are about?
Of course. Yeah. So in fast forward, let me see. We have first chapters, obstacles or opportunities. So talking to chapters actually called shit happens and then there’s a couple chapters about changing your priorities. So there’s shift happens, which is about my shift in mentality from being down on myself, why did this happen to me to? How can I turn this obstacle into an opportunity? And then there’s a chapter, I go into a little bit about, like the various deficits that I had as a result, so there’s, it’s not just for wrinkles, which is about me getting Botox and how the Botox helps with the spasticity.
There’s whack a mole, which is I kind of compare like that game, whack a mole to like the vision exercises that I would have to do so that’s a that’s a fun one. I talk about having positive vibes. There’s a whole section on positive vibes only because when I was in inpatient rehab, I met another fellow patient, this man who would always say like positive vibes only. And so I decided like, Oh, that’s a cool little thing to say. And I actually had a T shirt that said positive vibes only. And always reminded me of him. But yeah, there’s a bunch of different chapters like on the various, I guess you could say struggles that I face, like as a result of the stroke.
Is it for I know, it’s for stroke survivors, but what kind of person is going to really appreciate it’s somebody that needs a mind shift, mindset. mindset shift, what kind of person is going to appreciate that book?
Honestly, so yes, I wrote this book with fellow stroke survivors, brain injury survivors in mind. However, I really think that anyone could stand to benefit from the lessons and the insights that are in there because I mean, especially now, considering we are all collectively living through a global pandemic. Like, I think that mindset is super important and finding ways to shift your perspective to appreciate, like the little things in our lives because okay, yes, lots of things are closed right now.
Like, we can’t necessarily go out to a restaurant or, you know, to a bar, do any of that kind of stuff like we used to. But, you know, what are the things that we can do in our lives that make us happy and give us an appreciation for the things that we do have? So I really do think that honestly, anyone could benefit from this stuff.
Yeah. You know, one of the numbers that you’ve got on the back cover is that one of the statistics are the 795,000 people in the United States have a stroke every single year.
You’re not alone
That is just staggering to listen to that, to read that and to hear myself say that really shocking, yeah, it’s shocking. And then the other thing about that is, those of us who are around have had a stroke or listening to this episode and watching on YouTube, you’re not alone, there’s so many people that are like you, that you can connect to and that you can learn from and relate to, and you can really feel like, you know, there is a way forward, you can see people that are 20 30 and 40 years post-stroke, and you can also meet people that are a few months post-stroke.
So it’s a really great way to give you the very broad range of what stroke looks like so that if you’re feeling bad about your current situation, you can adapt and you can change and you can shift your mindset.
Exactly and you’re not alone.
Yeah that’s really important and now you’re not alone but you can also connect on social media and use social media for something amazing rather than just saying you know what car the person down the road purchased or you know what their new pair of shoes look like any of that stuff you can use social media for something really positive and in a good way, in a great way and we’ve got that going on Instagram, haven’t we? The hashtag stroke survivor, the hashtag stroke recovery the hashtag AVM survivor, brain surgery survivor, all those really bring people up from around the world.
To unite. Yeah, no, it’s amazing. It’s great. This community that there is social media on Instagram. It’s really quite amazing.
Yeah, so tell me this books called fast forward. Is there a third book?
On the horizon? I mean, who knows? It’s it’s looking like it’s starting to be a series. However, I’m not sure what other way I could tie in the forward idea. fashion forward, fast forward. I don’t know.
I’m sure you’ll come up with something. Did you notice that the first three letters of both titles are FAS?
I didn’t think about that. But you’re right. Yes. Okay.
So maybe there’s another word that says what you wanted to say that starts with FAS. And then you can go with that.
Maybe I have to think about that. I’m not currently starting to write another book. But who knows, maybe in like, a couple of years, I would revisit add another one. Because for me, it’s like a cool way to look back like, on my journey, because it forces me to kind of reflect on what’s like this first, this one, fast forward. About the first three years of my recovery, like, who knows, three years from now, when I’m six years down the line.
I think it’s really important to like reflect, as we’re living through something that’s traumatic or just, like challenging or difficult. And so I try and journal every couple of days about, like things that have happened in my life. And I just, I don’t know, I think it’s very important. And this writing these two books, has really forced me to like take the time to reflect on how I feel about how the past couple of years have gone and like things I’ve accomplished in that time.
Yeah, you really do get a sense of that. There’s a lot of people who post photos before and after stroke, and then they post photos along the line, how their face has changed, their muscles have developed further right, or they’re walking better. And I didn’t think about doing that kind of stuff. And I wish I got somebody to show me in my recovery how I was improving.
I had, I had a lot of issues with speech and memory and cognitive processes. So it would have been good to be able to reflect on that. And the only person who ever said that to me was my, that I was improving was my counselor at the time. My psychologist, she said to me, boy, I’ve noticed how much better you’re speaking certain amounts of month, months down the track.
Post-stroke recovery progress
So if somebody is out there, and they want to be able to reflect back to see how far they’ve come, ask a friend ask somebody who could record you, and then play it back to you in a few months time so you can get a bit of a boost about you know, that you are improving and you’re not just focusing on what you can’t do, focusing on what you’re getting back, focusing on what you can do.
Exactly, because it’s hard to I think when you’re living the day today, of going through your recovery and stuff, you don’t necessarily see the improvements as they’re happening. So that’s why when you ask other people who haven’t seen you in maybe a couple of months like, or if you take videos that like, I like to take a lot of videos and pictures of myself, so I can like look back on those and see like, oh look in this video if you compare this video I took last week when I took like three years ago, like, my walking is way better.
And so that like, I’ll look back on old videos and I’ll photos when, like when I’m feeling down or whatever, and then it will really remind me and put things into perspective like, okay, I think that I’m like plateauing that I’m not really making any progress. However, I’m looking at these videos and I’m like, just remember where you were like a year ago, two years ago.
Just think about that. Like, okay, Maddi, you used to not even be able to sit in a wheelchair. And then you walk with a cane-like and look at you now like you’re not even you don’t even need a cane to walk. You don’t even need these Have someone there. So I think that recording yourself or talking to people who haven’t seen you in a while really helps the things into perspective.
I love your zest for life. I love the way you go about things. And as somebody who was formerly 22 years old, I think I was such a non switched on person as in I was just going about life, just being a normal 22 year old but a little less mindful of anything that was happening around me. I certainly didn’t follow my passions. I lived in fear, I was always afraid of failing and what people would say if I failed.
And it took me a long time to overcome that, you know, I had to have a stroke and start to take your attitude, but I had to take that 37 onwards and kind of miss out that I’ve missed that opportunity to push myself early on now. I’m not regretting that because I can reflect on that now and say, well, how much have I grown? And look how different I am now. And look how many things I’m doing that I never was before. Right? So. I think as a 46-year-old now, almost 46 year old, I just really want to say, what for 22 you are an amazing person.
I’m 25 now.
Oh, yeah, right, that’s right for 25.
I’m 22 and a half, and I’m 25 so not 22 anymore.
But even for a 22 year old, who’s now 25 you are so well placed to become like an amazing version of yourself and make yourself have a really fulfilled life, that you’re going to also impact others in a positive way. And I think that is such a great thing and you should be commended. And you should feel very, very blessed to be the kind of person that you are even more so than I already know. That you feel blessed you know?
Thank you. Thank you That’s very kind.
So with that in mind if somebody wanted to connect with you so they can get some of your call inspiration buy your books. Just reach out and touch base with you? How would they go about that? What’s the best way?
Okay, so first and foremost, yes, I would love to connect with anyone and ever and I’m always looking to connect with especially other stroke and brain injury survivors. So I would love for anyone to reach out you can find me on Instagram I am Maddi stroke of luck. I’m sure that you can put that in the podcast episode.
And on the like in my Instagram bio, I have the link to buy my book. So if people are looking for some to read my story and also okay if you also have physical deficits like I do in my Book, the very end of my book, there’s a bunch of exercises that I do that have helped me a lot. So I put both exercises for my for the leg and for the arm and like the ones that have worked for me and that I felt have helped a lot. So if you have physical deficits, like maybe you would be interested in reading it in ebook and paperback.
Excellent, I will have all those links in the show notes. So anyone that wants to get those links, just go to recoveryafterstroke.com and you’ll see Maddi’s episode and from there, I wish you really well all the best and have an amazing, continued and ongoing recovery. And please reach out anytime if there’s anything I can do for you.
Yes, no. And likewise, thank you so so much for having me. This is awesome.
Discover how to support your recovery after stroke. Go to recoveryafterstroke.com