Coco: Hi, it's so nice to meet you! Please tell me about yourself. You can start wherever you would like to.
Chaandani: Hi, it's nice to meet you. My name is Chaandani. It's interesting it's actually challenging to jump into professions and hobbies, because having a brain injury severely derailed my life. So maybe I can kind of unfold those as our conversation continues. But I will say that I live in Vancouver, Canada.
Coco: Oh, ok thank you. Could you please tell us as much as you feel comfortable sharing about your injury experiences?
Chaandani: Sure! So, in 2019, I was in a car accident. And what happened is that a woman flew through a stop sign and she said she didn't stop, and she ended up smashing into my driver's side door and that caused a lot of neck and back injuries for me as well as the worst part being concussion brain injury.
Coco: How was your recovery process?
Chaandani: I mean, it's that was three years ago, and it's honestly been like a really challenging period of time. So, I have, as I mentioned, a concussion brain injury, and that turned into post-concussion syndrome. So, I'm still actually actively recovering as we speak. Yeah, it's been quite a learning curve, but it hit really hard.
Coco: How were you feeling during that period of hardship and how are you coping with it?
Chaandani: I'd say probably some of the biggest challenges or changes to my life during this period of time, has been the loss of control. So, when I was injured, it was actually fairly severe. And what happened is that I went from, you know, being a really busy person who worked six to seven days a week. I've worked like 10 to 12 hours a day. I was a volunteer. I was a friend that was very social. I was committed to a workout schedule. I had this, you know, I had hobbies and interests and a really full life. So, I went back to being injured and not being able to engage in any of those things. So, I lost control over what I was doing every day and how I was showing up. Yeah, it was it was really, really hard. But my life just became an onslaught of really relentless appointments. So my life went from being busy. And exciting and fun, and autonomous, to just having to go to so many appointments and answer emails and talk to case managers and, and all of a sudden I became a person of various systems. And, you know, I've always been really highly motivated, go-better type of person. And then all of a sudden be in a position where I couldn't make a sandwich because I couldn't figure out how or I couldn't change. I didn't have energy when I woke up in the morning to actually change my clothes for the entire day. Like that was really eye opening and very painful.
Coco: Yeah, some of my friends have the same experiences, like they have some kind of memory loss and then they have no energy to put on clothes, or they can't finish their work. So, I know it's pretty hard for you to go back to the normal life.
Chaandani: Yeah, that's exactly it. So that's like one of the other really big painful lessons that I learned is that you can actually lose a sense of self. And that's something that I never would have understood before. Even if someone explained it to me, I would have tried to understand but I never would have grasped it until actually living it myself. But, you know, it's interestingly, in the Western world, I feel especially that we really define ourselves. Based upon our external factors. So like the things I mentioned about being a worker and a friend and all these, you know, things but then what happens when that's all taken away? In my case, I learned the hard way that all of a sudden you don't really know who you are anymore. And not just because you have terrible memory problems, but because it's so much bigger issue at play.
Coco: Right. So how did you handle this kind of hardship in life?
Chaandani: Yeah, that's an ongoing challenge. It's just kind of been like since then the phases that I've gone through with it. At first I was I was just I was not very functional at all. And I wasn't able to do basic things like cook for myself. Wake up. Honestly, wake up. I just, if I fell asleep, I slept for really weird long hours, or just would have a lot of days where like, sleep. I couldn't prepare food properly. I wasn't able to keep my place clean on my own, between like the physical limitations and the cognitive ones. There was just a lot of issues. So as far as how to handle but honestly, I have been very lucky to work with a therapist for this whole time. And I still work with her every single week. So she's helped me really come to terms with this volume of loss and shift in like, who I thought it was versus who I am now and how I'm able to show up in the world. So, I said therapy was a really big piece as well as honestly the first like year and a half. It was just pure survival. So, it was just being the very basics just to make sure that I was getting through day by day and the biggest challenges someday, honestly, like it could be something like just getting out of bed like did I get out of bed today that I managed to you know, was there food in the fridge that someone brought me did I manage to eat it? And like that was it that was a successful day. So, I have really dark times.
Coco: So, you had a brand new definition for success right?
Chaandani: Yeah. It's, it's there's like a lot of work with therapy that can be done in therapy that can be done. Like you're just saying, it's kind of like shifting your perspective. So instead of going to work and earning money and driving places and being social and talking to your family and doing activities he wants, you just really have to work hard to shift your perspective into what is a successful day for you. And that is a painful process.
Coco: How do you feel about this improving process? What kind of changes did you experience?
Chaandani: Okay, so the process just to be clear, in my case, in particular, it wasn't just like, I got better with a bit of time. I've been working with a team of 11 different professionals. To help address all sorts of cognitive, behavioural, physical, and other issues that this concussion brain injury has caused me. So, you know, it's a really challenging thing to say because, on one hand, if I look at where I was in the first year versus where I am now I can confidently say like, yeah, I have some improvements. And I'm getting better in these fields. And I can see it every day and I can record it on paper. But then on the other hand, if I look at how I was and who I was as a person for my entire life, and up until my accident, I'm not even close to that right now. So, it's yeah, it's it remains honestly really challenging for me, and I refer to this as being like in a quote unquote, gray space. It's kind of a term that I've coined to describe existing in the middle of things that are challenging. That's kind of Yeah, that's how I would answer as far as improvement. It's like it's very much as I'm dying to just say, I'm better. Everything's better. My brain is healed. Things are great. But that's not the truth. And I'm here to speak in a very raw and vulnerable way. So I'm giving you the ultimate the absolute sorry, the absolute truth.
Coco: Thank you so much. Did you receive help or some assistance from your family, friends, or other external support?
Chaandani: Yeah, I mean, when I was injured, it's just like, there's a whole process behind it. But essentially, I ended up working with like I mentioned 11 different professionals. So that's on like the medical therapy type of side of things. For example, I have worked with a chiropractor, and RMT actually, let me start that over. I worked with a physiotherapist, but similar physiotherapist, a chiropractor and aren’t Kinesiologist. And honestly, the list goes on. And then in my own personal life. Yeah, I definitely my family was supportive and I'm, you know, very appreciative of that. And I've been really lucky to have a close circle of girlfriends I can always lean on for anything. They came through and lots of different ways, but at the same time being a person in this experience. I didn't know what to ask for a lot of the time. All I knew was that I had to try to survive each day One day at a time and so you know, if it was a different injury that was a broken arm, it would have been so much easier in a way because I could be like, Hey, I can't put my hair in a ponytail. Can someone help me? Or hey, I can cut this, this watermelon. But in this case, it was just so much unknown and just kind of struggle and so it was really challenging for me to ask for help or for them even to know what to do and I just I had so many light sensitivity, sound sensitivity, overwhelm and loads of other different symptoms at any given time that being around people was really exhausting. So, I did end up permitting and spending a lot of time alone and just trying to survive.
Coco: We have a few interviewees before that also got concussions. So, what are some helpful tips to improve their life? And then what would you suggest for them as well?
Chaandani: Good question. I mean, I think the first thing to address is that there is no quick answer quick fix announcer. It just does this. I think it's important for us to look at that and to be realistic that there isn't just one thing you can do that will make you better. The second thing that comes to mind is there's an expression that I'm quoting it isn't mine, but it goes once you've seen one concussion, you've seen concussion period, you know, just kind of let that stand on its own. So, you know, just speaking to the subjectivity of it, but sort of in a general sense advice to somebody in this situation, or somebody who has a different type of brain injury. Would be the importance of finding community. That's something that made a really big difference for me emotionally, once I was in a place to have, I guess, the luxury of, of looking at emotional problems versus my physical and cognitive limitations. If that makes sense. Yeah. Having a community whether it's online, you find a Facebook group or it's asking your medical team to pass you on to a support group or it's asking your friends and family to find someone, just one person at least. Ideally, a group of people who have gone through what you're going through is huge. It took me about a year and a half to two years to get to a point where I was actually able to accept, accept where I was in my life, and that I was now a member of, for example, the invisible injury community or the invisible disability community. But once I got there and started speaking to others, honestly, I just felt so validated and it made a huge difference in my day to day. So, my first one my second one is just for everyone to know that you can and will improve. I mean, I'm not here to guarantee results. I wish I could I wish I could for myself. No, that's the thing is no one can guarantee what level you will improve to, but it can be a really, really challenging on your mental health, this whole this whole experience. So just knowing that you can and will improve was important, especially when there are so lots of doctors and medical staff so staff out there that don't necessarily provide the level of support that one would hope for.
Coco: Yeah. So maybe like people that have the same empathy toward you, or they may feel the same. So, they will know your situation pretty well. And that's how, like you use you stand in this in this community and how this work pretty well. Right?
Chaandani: Yeah, just like really, really truly seeing each other struggles.
Coco: Right. So, what's the first thing you want to do after pandemic?
Chaandani: Oh, so I am so I am actively recovering and that is my number one priority. However, I'm also really excited because I've started to get involved in the concussion, brain injury world, and I've just realized how much the general public does not know about it. Even though it's super common injury. And so, I'm yeah, I'm starting to do interviews like this. Speak on podcasts. I have a couple talks coming up and so I'm just doing my best on my side, with the with the limitations and challenges that I have in my life every day like especially around energy to manage that so that I can show up for these because I think it's really important to speak for others who have lost their voice in this position. And yeah, just make my mark.
Coco: Right. Yeah, it's good to see people actively participated in this community and advocate for it. We're doing those kinds of podcasts, podcasts, and we're currently working on a podcast as well. So maybe we can after we finish it, we can just like link our conversation to Spotify, or YouTube or other kinds of podcasts so people will know about us and then like that is how everything works.
Chaandani: Definitely! Please keep me posted as you create that I'd love to I'd love to join you for a podcast interview sometime.
Coco: Awesome! Thank you!
Chaandani: Thank you. I really appreciate the work that you're doing because it's something that genuinely has changed my entire life. So, I appreciate when people who haven't had this experience are just as passionate as I am from the inside. So, thank you.