Your Complex Brain
Your Complex Brain
Life After Stroke: A Young Woman’s Recovery
In this powerful and inspiring bonus episode, we delve into the remarkable journey of Shruti Kothari, a 34-year-old actress and stroke survivor.
On March 7, 2020, just before the pandemic shook the world, Shruti experienced a stroke while hosting friends at her apartment. Her left side went numb, and thanks to a quick-thinking friend trained in recognizing stroke symptoms, paramedics were called immediately.
Shruti’s story is not just one of survival but thriving against all odds. She talks about her rehabilitation process, an innovative program that helped her regain movement in her arm, and her determination to continue her acting career. Despite the challenges, Shruti’s optimism and drive to give back to the community shine through.
Additional Resources
UHN's Stroke Prevention Clinic
Dr. Pikula was interviewed in the Your Complex Brain episode "The Rise of Stroke in Young Adults"
UHN Foundation video "Shruti's journey back to the stage, with some help from Team UHN"
Heart and Stroke Foundation of Canada – Women's Digital Hub
World Stroke Academy podcast featuring Dr. Lindsay
The Your Complex Brain production team is Heather Sherman, Jessica Schmidt, Dr. Amy Ma, Kim Perry, Alley Wilson, Sara Yuan, Meagan Anderi, Liz Chapman, and Lorna Gilfedder.
The Krembil Brain Institute, part of University Health Network, in Toronto, is home to one of the world's largest and most comprehensive teams of physicians and scientists uniquely working hand-in-hand to prevent and confront problems of the brain and spine, such as Parkinson's, Alzheimer's, epilepsy, stroke, spinal cord injury, chronic pain, brain cancer or concussion, in their lifetime. Through state-of-the-art patient care and advanced research, we are working relentlessly toward finding new treatments and cures.
Do you want to know more about the Krembil Brain Institute at UHN? Visit us at: uhn.ca/krembil
To get in touch, email us at krembil@uhn.ca or message us on social media:
Instagram - @krembilresearch
Twitter - @KBI_UHN
Facebook - https://www.facebook.com/KrembilBrainInstitute
Thanks for listening!
00[bubbly electronic music] My name is Shruti Kothari. It's actually pronounced Shroo-thee Kothari, but no one calls me that except for my parents when I'm in trouble, so Shruti is really my name now, and I am a 34-year-old actress and stroke survivor. My friends and family would describe me as outgoing, an extrovert, very social, very friendly. Some people have described me as being intimidating. I don't see it, myself.[chuckles] I think of myself as being very friendly and very approachable and, let me put it this way, when I was a kid, my favourite thing to do was to find the shyest person in the room and bring them out of their shell. So, that's me.[music continues] I think energy is just so important and, especially when you're going through a recovery of any kind, your energy and your attitude is just so paramount to recovery, and how you approach things is as important as what the actual thing you're approaching is, in my opinion. On March 7th of 2020—this was about a week before the pandemic exploded in North America—it was a beautiful, sunny day and I was in my apartment in the annex with my partner at the time, and we had some visitors, our old neighbours. We had been living in Stratford for the previous two years, so our old neighbours had come to visit us with their new baby, and we were trying to figure out where to go for brunch, where to go for brunch, you know, the typical morning, and I was holding their baby and, all of a sudden, I felt my left side go a little numb, and so I thought, "This is odd," so I handed the baby back to his mother and I decided to go out onto our balcony just to get a bit of air. I thought I'd stretch it out. And, when I went out onto the balcony, I was doing a sun salutation. I was doing a bit of yoga, trying to get some air in, and I fell over because I lost sensation on my left side. And then, my partner came out to the balcony and he said, "Are you okay or are you just being Shruti?" I told him I couldn't feel my left side and he picked me up and took me into the apartment and our friends, actually one of them, she used to work at L'Arche, which is a community of different group living homes for patients who are autistic and/or have various different kinds of disabilities. So, she had been trained in what a stroke can look like, so she, right away, was like, "We need to call the paramedics," and thank god she did that, because I don't know if you know the—I'm sure you do—but the acronym FAST, which stands for Face, Arms, Speech, and Time, which are the four crucial things that you want to look for if you're having any sort of brain episode. So, luckily, she knew the acronym. She thought, "Okay, there's no time to waste." Let's just call the paramedics right away, and thank god she was there because I would have brushed it off, saying, "I'm fine, I'm fine, I'm fine." But, you know, they called the paramedics and, by the time they got there, I was, you know, fine. I was making jokes and, you know, trying not to make a big deal of things, you know, hoping to still go for brunch on this beautiful day. And, the next thing I knew, I was in the back of an ambulance with my partner and I was telling him to call my parents, and then I asked him to e-mail a bunch of my friends to let them know what was going on because I knew that my family would need support if this was serious.[music fades out] I, of course, at the time, didn't know how serious it was. I didn't know that, at that moment, I would not be seeing him again for many, many, many months.[light electronic music] The way my partner described it, it was like a TV show, you know, where he was running alongside the gurney with the doctors and stuff and, apparently, by the time my parents got there, I had been prepped for surgery. I don't remember any of this at all, but they had apparently been told to say goodbye to me just in case. I can't even imagine what that must be like for a parent to hear that and to have to do that. Of course, my mother didn't say goodbye. She said, "I'll see you soon," so ever the optimist. You know, the apple doesn't fall far from the tree.[music fades out][gentle electronic music] And then, I went in for surgery. It was a long procedure, I understand, where they had to remove half of my skull to alleviate the swelling of my brain. I still don't know what the source of the bleed was, in terms of why it happened. They have absolutely no idea because I was, and am, a very healthy, very fit young adult. But I think it just goes to show that, with things like stroke, anyone could be a victim to it.[music fades out] [upbeat electronic music] It really just strikes. You know, that's why they call a stroke. It strikes anywhere, anyone, at any time, which is really frightening,'cause I was a very active, very healthy young woman, not at all overweight, my lifestyle was good, I was not a smoker, I was a vegetarian. All of the things that you would think would be contributing factors to brain injury, I did not check those boxes, so it was really scary. But anyhow, I went into the surgery, and then I was-- I think it was, like, a seven- or eight-hour surgery, apparently, and my family was just waiting outside, you know, on tenterhooks [chuckles] until I got out. And then, I was placed into a medically induced coma, just to let my brain heal for a while. I don't know how long I was in the coma for, but I think I have memories from being in the coma. I'm not sure if it's true or not. It could be dreams. It could be... I don't know. But anyhow, it was a wild time, to say the least.[music fades out][bubbly electronic music] But, when I started coming out of my coma, I remember it actually distinctly because I was in the ICU and I heard moaning and I thought it was my partner beside me, so I went to hit him, [laughs] you know, and I hit the side of the bed because I was in a hospital bed and, at home, I sleep in a queen, and I thought I would be hitting my partner. No, I hit the side of the bed and that really hurt. So, that was my coming to, and to be honest, I actually don't remember being told what happened to me or what was happening in the world, but I was very confused as to why my family wasn't there. So, for the longest time, I knew I was in hospital. I could see that I was in a hospital, and of course everyone was wearing a mask and I was like, "This isn't normal. What's going on?" And I couldn't speak because I have a trach in, and my brain rationalized that with, "Oh, well, if I can't speak or if people can't understand me, that must mean I'm in a different country." Isn't that bizarre that my brain just tried to rationalize it and that's what it came up with? It came up with, "I must be in a different country because, if I was at home, then my family would be here with me, and the nurses would be understanding what I'm saying." But yeah, so I had a whiteboard that I would write things down on, and a lot of what I was writing, at first. was, "Where am I? What has happened? Have I been kidnapped?" you know, because just my mind went to the scariest places and, to be honest, I don't remember being told what happened, nor do I remember being told about the pandemic, but I did have two iPads with me—they were my sister's iPads— and so, when I pull up the news, all I would see was stuff about George Floyd. That was the timing, I guess, around when I came out of my coma, and some stuff about a pandemic.[rhythmic electronic music] I kind of pieced things together, but honestly, I really didn't know or understand what was going on and it was really very scary. That was the scariest part of everything was just not knowing, so like I said, when I came out of my coma, I had a trach in, so I wasn't able to speak. But luckily, when I was in grade one, I had learned the ASL alphabet, so I was using the ASL alphabet to communicate with my mother and my sisters over FaceTime—shout out to Mr Pettigrew who was the student teacher when I was in grade one who handed out the alphabet to us all, and I, in my keen six-year-old way, I took it home when I learned it—so anyhow, my mom had told me that the step-by-step process was basically that I had to be weaned off of the trach and the g-tube—my feeding tube—before I could go to the-- it was a low-intensity rehab place, which was the Bickle Centre, and then I would go to a high-intensity rehab place, which was TRI on University. Something that I remember is, I'm evidently a talker, so the scariest thing was thinking that I might not have my speech.[music fades out] I might have aphasia, and I'm so fortunate to not have any of that. That was not the part of my brain that was affected at all. For me, it was my motor recovery and, because I'm such a talker, because I'm an actress, if I had lost my speech, I would have lost my sense of identity completely, and that would have been devastating.[music fades out] So, I'm incredibly fortunate and incredibly grateful to not have those problems.[gentle electronic music] I know a lot of stroke survivors do struggle with aphasia, and I can't even imagine how difficult that must be. So, I was very fortunate to get my speech back fairly quickly and I remember working on my mouth muscles with my mom. She would call me every hour and make sure that I did my exercises. She was amazing. She really, really was. So, I'm very, very fortunate, and I'll tell you a crazy story. The night before my stroke, I couldn't sleep just because I was starting to watch a movie downstairs with my partner, and then I went up to bed, and so I was tired but then I ended up watching Gone With the Wind in bed – of course, the longest movie of all time. But anyhow, in that time, I had been thinking, because my partner is a screenwriter and he had a film that he was beginning to film and the actress in the film was blind and I was wondering why that was, and I knew that she had had a stroke and that was why. And so, I realized I had no idea what a stroke was, so I Googled what a stroke was the night before I had a stroke. Ominous, huh? So that is just one of those things that happened, which is very strange. And so, yeah, it was a little odd. And, even as a child, my biggest fear was... Actually, no. As a child, my biggest fear was being kidnapped, but as I got older, my biggest fear was having a brain haemorrhage because I had read about an actor named Jonathan Crombie. I don't know if you ever watched Anne of Green Gables. I was a big fan when I was a kid. I mean, he played Gilbert Blythe and, aA number of years ago, he passed away from a brain haemorrhage and he was found in a hotel and he had had a brain haemorrhage. And I remember reading that in the papers when I was young and I've been thinking to myself, "That is the most horrifying thing in the world to just be at work and then in your hotel room, and then you just die." You know, he was a young guy. I think he was in his 40s, so this was a few that I had, and so, of course, I'm thinking, "Did I manifest this? I don't know." All these horrible things. And, of course, I know now that I didn't manifest it, but it's just one of those things that's really odd and scary and one of those odd coincidences, I think.[music fades out][gentle electronic music] So this horrible thing happened, but I am an eternal optimist, and I just don't believe that this is the end for me, so to speak. Let me put it this way. So, I had the stroke in March of 2020. In October of 2019, I had been in a terrible car accident, a really bad one. I luckily walked away without a scratch, which was incredibly fortunate and, when they first told me about the stroke, my first question was,"Is it because of the car crash?" But, of course, in my case, the doctors aren't sure why I had the stroke at all, which is kind of unfortunate because, if you know, at least, you can maybe do something to figure out what you can do to avoid things in the future. But they think it might have been an AVM—an arteriovenous malformation—in which case, it's kind of like a ticking time bomb, so there's really nothing you can do about it. It's just going to erupt when it erupts, from my understanding. I'm not surprised that I am making such a good recovery because I refuse anything but and, let me put it this way, I didn't survive a terrible car accident and a crazy brain haemorrhage to have a sad life that I don't appreciate. That doesn't make sense to me, so I appreciate every moment that I've been given. My parents will always say, "You know, Shruti, you're looking for that magic bullet and that magic bullet doesn't exist, unfortunately," which is true, and that is something I have to keep in mind. But even that being said, I will leave no stone unturned until I find something that is going to help me. I worked my ass off to have a successful career as an actor and I intend to continue to do so.[music continues] I am very fortunate in that we worked a lot on my core strength when I was at TRI, because I had none whatsoever. I could barely sit up in my wheelchair, and now I am walking. I'm walking with a cane and with some braces around my ankles, but I'm walking, which is miraculous, really – nothing short of miraculous. My left arm is still quite paralyzed. I have been told that this is the last thing that comes back, usually. I'm not sure why that is, but I am working really hard to get it back because we live in a two-handed world, and it's very difficult, not having both of your hands. Something as simple as tying your hair up – I'm a young woman and I like my long hair and I know that I've spoken to cancer patients who have talked about losing their hair and how emotional that can be, and I'm not ready to chop all my hair off. I did once. I had to shave it for the surgeries, and it's grown in quite nicely. I'd like to be able to tie my hair up. I'd like to be able to wash my own hair. I can shower by myself again.[light electronic music] I'm working really hard on getting my arm back and I'm doing a myriad of different things, one of which is though the KITE Institute, I am doing MyndMove, which is a program that was developed by Dr Milos Popovic, and it basically is a functional electrical stimulation system—I'm afraid I'm going to butcher this, but—where they basically strap electrodes up to your muscles and then, instead of your brain telling your muscles what to do, the electrodes are getting your muscles to do the movement and then sending the information backwards to your brain, saying, "This is what you're supposed to be doing," kind of thing. That is my very simplified understanding of what it does, but let me put it this way. I had a completely flaccid arm for the longest time, and then I did two sessions of MyndMove, and I can lift my arm now. I mean, it's not functional at all, but it's pretty incredible. I remember being in the hospital and actually speaking to my therapist and asking them if they have volunteers because I was there during the pandemic. They had no volunteers at the time, or at least I didn't see any because of the pandemic, again. So, I asked them outright, "You know, do you have volunteers?" because I wanted to give back because they work damn hard, the therapists and the nurses alike. Honestly, the doctors, the nurses, the therapists – everyone works so hard and, during the pandemic, they were all working such crazy hours and they were doing 20 different jobs at the same time. It was really incredible. I knew that I desperately wanted to give back. Being the very friendly person that I am, I would eat my meals with different patients and chat and find out their stories, and I realized that, A, we are so lucky in this country to have the healthcare system we do and, B, someone who has a voice like I do has to give back. I mean, it's my responsibility to do so. I was definitely the 30-year-old who said, "A stroke can't touch me." Healthy, I had never broken a toe in my life. I really thought it was invincible, and far from it. So, I think it's important that we all recognize that and realize that life is fragile, and I think that a stroke can happen to anyone at any time, any age, any circumstances of health. It could just happen to anyone, which is terrifying, but people need to know that.[music fades out][uplifting electronic music] I think that kindness goes a long way. It goes a really, really long way. And patience... I learned so much about patience because I was not a patient person at all before. I still don't believe I am. I've had to become patient with myself, that things take time and this is a new process of me having to learn how to walk all over again. It is much harder when you're an adult and you have 3 1/2 feet to fall rather than 6 inches.[chuckles] It's funny because, I mean, the pandemic is not a funny thing at all but the fact that my stroke coincided with the pandemic, even my friends, you know, messaged me when I was in the hospital, saying,"Shruti, you're not missing anything. Don't worry."[laughs] "You're missing people hoarding toilet paper. That's about it." Honestly, in terms of what I've learned, I'm still trying to figure that out.[laughs] But, I just think that we can't take our health for granted. That is just something that's become so apparent to me because it's not always in our control. I encourage people to loosen the reins a bit and understand that life is going to take you up and down and you've got to learn to ride the wave. My career was kind of taking off. It was really in a great spot. I had just finished two seasons at the Stratford Festival, and I had just moved back to Toronto because I was doing a a contract in Toronto, which is home for me. I moved back to Toronto to do a show here and I had just finished that show, and I had some open time, which was actually quite exciting for me because, for three years prior to that, I had had a really hectic schedule. I had no time for myself. I remember, at New Year's Eve of 2020, thinking, "This is going to be the year for me where I'm going to travel, I'm going to go somewhere with my partner, we're going to maybe get married. We'll see." You know, there were infinite possibilities for 2020. And then, of course, [laughs] we all know what happened.[sighs resignedly] Yeah.[music continues] So, I feel like the same person, but I am inherently different because of my experience. I used to be the most carefree person you ever met – the most carefree person.[music fades out] [bubbly electronic music] Don't tell my mom this, but I was the person who, at a stop light in my car, I would pull out my ukulele and start playing – not the safest thing to do but, you know, I was truly carefree and I just lived every moment like it was my last. That's really how I lived my life, which I'm grateful for, but I am not carefree anymore. I am very careful, which I'll be perfectly honest, I miss that carefree person.[music continues] I am sad a lot of the time, and I'm not used to being sad. I'm not used to being a sad person. I remember in high school, I used to romanticize sadness so much because I was this young person who wanted to be an actor and who wanted all these dramatic things to happen and I thought sadness was so romantic, and now that I am living it, it ain't so romantic. It's mostly a lot of blubbering. I am still very optimistic about my future. Let me put it this way, I don't think I survived a deadly car accident and a deadly stroke to have a sad, less than mediocre life. So, you know, it's up to me to make sure I make the most of this second chance at life.[music fades out]