Brain Injury - Day in the Life with Sarah Levis

In this episode of the Day in the Life series, host Taylor sits down with Sarah Levis, a stroke survivor and writer, who shares her powerful journey of redefining life after a brain injury. Sarah opens up about the path from shock and loss to resilience and purpose, exploring how she became a writer, coach, and disability advocate. Together, they discuss identity, accessibility, and the quiet strength in creative adaptation.

Sarah's website:

https://www.powerineverybody.ca/

Sarah's Substack:

https://sarahlevis.substack.com/

Transcript

Sarah: 00:01

Approaching a situation where someone is disabled with gratitude and trying to look for the positive things is very difficult. I've been in that mindset as well. But if I've had trouble getting to work that day, then I try to focus on the positive: I had a lovely conversation at work with someone I hadn't seen in a long time, or I got a ride home. I got to go grocery shopping, and someone offered me a ride home, so I didn't have to call a cab. Even those small things can really make a day. I try to be as grateful as I can for the many things I've been given because I've been very fortunate.

Taylor: 00:30

Welcome to the Day in the Life series on the Accessible Community Podcast, where we explore disability and accessibility in everyday life. Each podcast episode is a new lens to broaden our understanding and drive inclusion. For show notes, go to accessiblecommunity.org slash podcasts. Let's make accessibility part of everyday life. Hey everyone, and welcome to a new episode of Day in the Life, a podcast series where we highlight different disabilities in order to raise awareness, better understand them, and hear from real people living day to day with these disabilities. Today I'm interviewing a woman named Sarah, and I'm really excited for today's interview. Before I get over to her, a quick introduction for myself, as always: I'm your host for this series, Taylor Dorward. I'm a Caucasian male with short brown hair. It's a little too short right now. I did not tell the lady who cut my hair very well what I wanted, so this is how it looks for now, but it'll grow back. Blue eyes, a medium-length beard that probably needs to be trimmed soon, and a white T-shirt with an olive green jacket layered over top. I also have my rose lens glasses on to help mitigate the lighting situation I have in here. That's a little bit of context, whether you're visually impaired or just listening to the audio version. So with that, I'll turn it over to my guest, Sarah, and let her introduce herself to everyone.

Sarah: 02:28

Hi. First, thank you for having me on, Taylor. It's great to be here. My name is Sarah Levis, and I have brown hair that's up in a clip right now. I'm wearing glasses and a black shirt with a blue sort of sweater thing layered over it. I'm a stroke survivor and happy to be here talking about that today.

Taylor: 03:07

Awesome. Yeah, and thank you for that. I always love doing those accessible introductions, and it's always interesting hearing it from others as well because it's nice to give that context to the viewers who are just listening to it. Also, for someone like me, I can't really see my interviewees very well, so it's nice to have more of a face that I can at least visualize as I'm talking to you. Thank you for that. All right, so you talked a little bit about yourself, but can you give us more of a holistic overview of who Sarah is? You can share as much or as little as you want. This is your time, so what do you want us all to know about you?

Sarah: 03:51

Well, I'm a writer and editor, and I'm moving into coaching for other people with disabilities because I wasn't born with disabilities. I was 22 when I discovered that I had what's called a brain arteriovenous malformation. I discovered that in the middle of a job interview, when I got the worst headache I'd ever had in my life, and I wasn't a person who got headaches. Between the doctor's appointment after that, where I went because I was scared I had meningitis and had been at a children's birthday party a couple of days earlier, and later at the ER that night, they said, “You're bleeding into your brain because of this malformation you have in your head,” which I didn't know was there. I never had any reason to have head imaging done before that night. But the tests after that, and all of the medical stuff that was totally unfamiliar to me because I'd never really been in a hospital environment before, said, “Yep, you have this. You need to have it treated.” I was in British Columbia at the time. My father came out to get me and take me back to Ontario, and they said this needed to have surgery done and this condition treated. I had a major stroke a couple of days later that wiped out my entire left side. I was told that might be a possibility, but it was much safer to have the surgery than not. For the past 25 years, I've been living with the aftereffects of that stroke. I'm 48 now.

Taylor: 06:28

Well, thank you for sharing all that. That's really helpful context. Part of the reason I love doing these interviews is that most people know disability as a whole is a very wide spectrum, but each individual instance can be its own spectrum. Brain injuries and strokes can affect different parts of the body, and autism can affect people in different ways. It's always very subjective, so I love that you shared a lot of what it's like for you. I appreciate that insight.

Taylor: 06:28

So I'm curious: how does your disability and your situation relate to your identity? Do you feel like it defines part of you? Do you feel like they're more separate? Do you have any thoughts on that?

Sarah: 06:28

I think maybe they were separate at first. I tried to keep them separate out of the idea that, well, this is something that happened, and I'm going to get over it, and my life is going to go back to how it was. I was very naive about that at first. I had told the people who were employing me at the time that I needed three weeks to recover from the brain surgery. Then I had these complicating factors afterward. The stroke also came with a seizure disorder that, to this day, they still don't really know why it happened, but it is there. We're still trying to find ways to completely stop the seizures. When that three weeks was up, even though everybody but me knew that I wasn't going back to work, I was still in the hospital. I hadn't even been to stroke rehabilitation yet. I called my employer that day and said, “I'm not coming into work tomorrow.” Of course, they said, “Well, yes, we understand.” A number of them had been to see me at the hospital. They knew I wasn't coming back. Everybody knew I wasn't coming back, but I had to keep hanging on to that idea that this had an end, and I was just going to go back to normal. After six months of inpatient rehab, I saw that life wasn't going to be going back to the way it was so quickly. I was probably not going to get control of my left arm and my left leg back to the way it was, at least for a very long time, if at all. Reading about other people who had been in the same boat as I was and learning more about disability, I started to realize that this had happened and it kind of derailed my life, which was the way I was looking at it at the time. But I was still Sarah, still who I was, just Sarah who happened to move a little bit slower and was now living one-handed. Nothing about who I was as a person had died that day, just some neural pathways. I started to embrace more that, yes, this was now part of who I was, and that it was okay. Whatever life looked like from here, this was what it was now, and let's find a way to make it the best life possible.

Taylor: 10:34

That's very interesting because I think I followed a fairly similar path early on when I attained my disability. Like you, I felt they were fairly separate, but then over time, because in the beginning I thought maybe I would regain all my vision and could go back to how life was before, and then through the therapy and many years of doing all that rehab, I slowly started to realize that, yeah, it's gotten a little better, but it's still part of me now. Once I realized it wasn't going anywhere, I was more at peace adopting it as part of who I was. It didn't define me, but it certainly wasn't going anywhere.

Sarah: 10:34

It's interesting how they're a little similar in that way. Yeah, it was a part of my life that I certainly couldn't ignore, so I kind of decided, like I said, let's make the best life possible. I started looking at things like, because I live in a very small town where people knew me, where people had seen me grow up, and saw me now as the one who was walking—well, first in a wheelchair and then walking around town with a cane. It probably wasn't going to be working, and I knew there probably weren't going to be very many jobs that I could do at first. But I kind of adopted the philosophy of, well, let's interview and see how far I can get. No harm in that.

Taylor: 11:50

Yeah, I think it's actually an interesting topic: how the experiences we go through, whether it's attaining a disability or really anything impactful, can shape our future and what we find ourselves doing. Before I attained my blindness, I was going to school to be a marine biologist, and I still love all that science stuff, but that's not even closely related to what I do now. Going through those experiences, doing the rehab, and working a lot with people with disabilities kind of shifted me into what I'm doing now, which is accessibility and stuff like this. It's always interesting hearing how the experiences we go through, like attaining our disabilities, can reframe the way we plan the rest of our lives, especially when it comes to our careers.

Sarah: 12:30

You had said that you do writing and editing. Do you write about anything, or is it usually in certain topics or areas?

Sarah: 12:30

For the clients I write for, and it took a long time to develop this business, yes, I'll write about anything. I worked for the United Church of Canada for four years, doing writing and some other administrative work from home for their national team. I'm an atheist, but I can write about Jesus. That's fine. I've always loved writing. It's not hard for me to put myself into the mindset where I can research something and then write about it. My personal writing—the blogging I did while I was really having trouble finding employment and for several years after I first had the stroke—was a lot about disability. That's not available anymore, but I've started a Substack again where I'm talking about things again. It is disability-focused, and it also goes into U.S. politics. I did a lot of that and am kind of going over that theme again: this is where I found myself, these are my ideas on it, and this is how disabled people are thinking in general. I started blogging right after George W. Bush was in office, and researching and writing about U.S. politics from that point on, and the various stances about disabilities, has been very interesting. A little bit scary now.

Taylor: 14:34

Yeah, it's good to stay up to date on that stuff, whether it be for legal requirements or just being in the know, but it can be stressful and frustrating when you see some of the legislation that's counterproductive when it comes to DEI, and in this case, more specifically for people with disabilities.

Sarah: 14:56

Not in terms of disabilities. Not that Canada's a whole lot better, but it seems that everyone thinks Canadians have it together when it comes to disability. Overall, the U.S. is probably more accessible, but in terms of government support, we're a bit ahead, I think. But we're not here to talk politics. The writing and reading what other people have written about disabilities has been a great way for me, especially for the people in this community, to get my ideas out to them and to learn what other people are thinking as well, and to become more educated.

Taylor: 15:45

Yeah, I love that. When I started getting more into the accessibility space, learning about the legal side was part of it, and one thing I briefly learned about was the Ontarians with Disabilities Act. Have you learned anything about that? It's been a while, so I don't really remember what all it covered.

Sarah: 16:08

Yes, it was great. We were very happy about it. It was voted in before I acquired disabilities, and I was following it because I did some work with what is now just called Community Living. I did a lot of volunteer work in high school with associations for community living, which support people with intellectual and developmental disabilities. That taught me a lot and helped me develop a friendship with a woman. For 25 years we were friends, until unfortunately she died a few years ago. It was such a great education for me, and she was such an important part of my life. Really, that was what got me on the path to, when I went into the hospital to have the brain surgery, I was scheduled to go to school and become a DSW that fall. Again, I had to make another phone call and say, “This will need to be put off because I've had a stroke, and I can't get there right now.” They all went, “Oh, yes,” and I've lost track of your question now.

Taylor: 17:20

Oh, no worries at all. I had brought up the Ontarians with Disabilities Act.

Taylor: 19:45

Right. You shared a lot of really helpful things to get to know you a little bit better, and I'm curious: what are some things you do outside of work to keep yourself occupied? Do you do writing in your free time as well, or do you have any other interests?

Sarah: 20:15

Yeah, I do some of my own writing. I've been in this community a long time, so I have friends I like to spend time with who understand my situation of not being able to drive because of the seizure disorder. They are always very good about coming to pick me up and take me home because this is such a small town, and there's no public transportation. I like to spend time with my sister when I can, but she and her husband have three children, and they're very, very busy. I don't get to see them as often as I'd like. Actually running the business keeps me busy, and seeing that everything that needs to be done for it gets done. I have a job in town—well, I don't consider it work because it's fun. I have a job in the town where I live, in a small shop, just a couple of days a week, where I can be out of my apartment, where I do all of my work for my clients, and actually be interacting with the community and seeing people. In some cases, I'm seeing people that I haven't seen for a long time, and they're always surprised to see me in a shop working.

Taylor: 21:50

That's really cool. Absolutely. Having a high amount of remote positions has been fantastic for accessibility, especially post-COVID, because a lot of jobs shifted from being strictly in office. Some have shifted back, but I've noticed a lot more remote positions, and that's great for people like you and me who can have a little bit more trouble with transportation, whether it's a lack of public transit or an inability to drive. Having remote positions is great, which is what I thrive on. But I think that's awesome that you can also experience that in-office kind of feel and get that direct interaction with people. Yeah, it's really cool.

Sarah: 22:41

The working at home, the remote work, has been—really, during COVID, when that all took off and people realized, “We're going to need to have people do this from home,” that's when this business that I'd been working at for years and years and years really started to make money. It's what's allowed me to move off of our government's support program and be able to support myself, which was a great feeling. I love the remote work, but again, there's something about being out in town and being in the community too. I get that from some of the volunteer work that I do as well. My family has lived in this town for 40 years, and people like seeing me as well, I think. I think they wonder, “Well, whatever happened to...” and suddenly there I am in this shop. They'll say sometimes, “Isn't it great that you're out working?” And I'll think, well, I've actually been working for the last 15 years. You just haven't seen it. But thank you.

Taylor: 23:59

Well, that's really cool. As a disability advocate, I do a lot of relaying statistics to give people more context. One thing, I think it's through the U.S. Department of Labor, is they track the percentage of disabled Americans who are employed. They started tracking in 2008, and I started presenting in 2019. After COVID, it bumped up about 15 percent. I think now it's around 30 percent, maybe even a little bit higher, but it's steadily been growing. I think there's a pretty strong correlation between the rise in access to remote positions. I think that's been really great for people like us, gaining access to these jobs that we couldn't have done before because they were like, “Oh, you have to be in office.” It's just one of those few latent benefits of the pandemic. If you're going to find the brighter side somewhere, it's a pretty good bright side to see more people with disabilities gaining access to work.

Sarah: 25:16

Absolutely.

Taylor: 25:19

Yeah, and I love seeing real-life examples of those latent benefits that help everyone. Again, that's a great way to showcase that stuff that helps people with disabilities can help everyone. I know a lot of people who work remotely, and whether they have a disability or not, they love the freedom it gives them to spend more time with their family and prioritize their mental health a little bit more.

Sarah: 25:47

That's just it. It is something that can absolutely work for everyone. I was having that discussion with somebody the other day about accessibility in general, saying how I think especially in Ontario, which is where I live, people hear the word accessibility and they're immediately thinking something huge and expensive that they have to change or add to their business or place of business. They kind of dread it, when so often it really is something that's not so big, something that can be really quite small in the grand scheme of things, but that's good for everybody.

Taylor: 26:47

Yeah, we all use curb cuts, whether it's pushing a shopping cart, being temporarily on crutches because we broke our foot, or pushing a child in a stroller. Everyone benefits from accessibility, and that's what I think more and more people need to be aware of because they think accessibility is just for those with disabilities. I always say it's not, but I worry people are thinking, “Of course you would say that. You're a person with a disability and a disability advocate.” But it really is for everyone, and curb cuts are just one of many examples.

Sarah: 27:30

Yes, it benefits everyone. It's a lot better than it used to be, but still, I know there are a couple of places in town that still kind of cringe when they see me coming because I've had to say to them, “Your wheelchair ramp isn't any good if it's got ice on it.”

Taylor: 27:50

Yeah, that does not sound fun. A little scary, actually. A lot of times, just navigating the environments around me and my city, I'll see examples like that where some things were intended to be accessible, but when done the wrong way or not maintained, they can really be counterproductive. In certain areas, I'm sure there's a curb cut, but I'm like, it's not marked, whether it's tactile, like it's got bumps, or it's colored with high-vis yellow paint. If accessibility is done in an inaccessible way, then it's almost like it might as well not be there sometimes. That's always an interesting and kind of disappointing thing to see. I see that in the physical world as well as highly in the digital world, like on websites.

Sarah: 29:01

Yeah, I see it too. Yes, on websites. If you're going to do it, you might as well do it right.

Taylor: 29:09

Yeah, I highly agree with that. When you're navigating websites and any kind of technology, do you use any kind of assistive technology to help you with that?

Sarah: 29:24

I use sticky keys on my keyboard because when you're typing with one hand, of course, sometimes it depends on which computer I'm using too, but the computer I'm on right now has a large keyboard. Sometimes the keyboard combinations, my hand isn't big enough to use them. I still don't have any movement at all, really, in my left hand. So sticky keys is great, but I've been very lucky in that I don't have to use a whole lot on the computer itself. Whether that's been because I didn't know they were there, or I was just stubborn and kind of powered through it—which I don't recommend to anybody. Find out what's there and actually use it. Don't be stubborn like I was. I can type at a reasonable speed with one hand now. The biggest challenge I come across is often carrying the computer with just one hand, but it's more the phones that I struggle with, the cell phones. It's awfully hard to text with one hand. It doesn't go very quickly, and I'm constantly hitting the wrong button. I see people doing it with two hands, and I think, I don't know if I could be that fast with two hands. I don't know how you're doing this. But with one hand, it's a slog.

Taylor: 31:12

I'm like, I would be making so many typos. But yeah, I get the challenges with typing. Even before I attained my blindness, I wasn't the best typist, but it's crazy how quickly you forget things. For a little while, I was in the coma, and then I couldn't really do very much for a while. In just that short period—or short is relative, a few months until I was able to be a little bit more independent—it was crazy how quickly I forgot how to do things. Something as simple as tying my shoes, I completely forgot how to tie my shoes. Now I've gotten better, but usually I just keep them tied and slide them on and off. I'm a big fan of Crocs. I think they're a very accessible shoe.

Sarah: 32:03

But yeah, it is those little things. No, sorry, I interrupted you. Keep going.

Taylor: 32:09

Go ahead.

Sarah: 32:13

It is those little things that you don't even really think about. I don't have laces in my shoes. I wear boots that I can slip on and off because, yeah, tying your shoes with one hand is too frustrating. That's why I get a little bit of support every day from some personal support workers, and that's the sort of thing they help me with because it's difficult to cut vegetables with just one hand. There are some things you can get to make that easier, like roller knives and cutting boards where you can put the vegetable on so it's anchored. But yes, it's those things you don't think about. As I was prepping to come home from rehab, I got there and discovered, well, okay, I can't open this jar because usually you have two hands to grasp a jar, and I can't do it. Or pill bottles with childproof locks on them. I figured out a way to open them now. I can do it, but sometimes it takes a little while.

Taylor: 33:34

Yeah, I get that. That's what I find most fascinating about so many of these interviews. I think this is around the 15th or something like that, and it's crazy: no matter what disability we're talking about, I'm always finding similarities in how we experience the world, no matter how different our disabilities are. It's been incredibly interesting, and I just love that I get to do this. I feel blessed because I get to speak with people like you and learn how you interact with the world and how our situations are different, but I can relate to a lot of the things you're talking about, which is really cool.

Sarah: 34:23

Yeah, I think in general, disabled people have to be a creative bunch because the world just isn't built for us. We have to kind of engineer things so that they work our way a little bit better. Then we forget, “Oh yeah, I do it this way.” I've had people come in and watch me do something, and they'll say, “Well, how did you figure that out?” And I'm like, because I had to, because I live by myself and there's no one else here. So yeah, I had to figure out a way.

Taylor: 35:12

Yeah, I'll have that happen too. One time I was at a driving range with a couple friends, and I was setting up to the golf ball in a very unique way. I would stand right over the ball and line up the club head to the ball, then sit back and get lined up, even though my friends would just walk up and get set up. They were fascinated. They were like, “How do you know how to do that?” And I was like, it's just something I've developed over the years. Anytime there's something I can't do right away, my brain has to figure out, all right, you can't do it the same way you used to, but there are still ways you can figure it out. Often there's a lot of trial and a lot of error. You also get those small dopamine hits when it works, and you're like, all right, nice, I figured out how to get that done.

Sarah: 36:05

Exactly. Yeah.

Taylor: 36:08

Yeah, I'm still not that great at golf, though, but getting there. Are there any things like that day to day, any unique Sarah-isms that you use throughout the day to help you be more independent?

Sarah: 36:31

A lot of it is just finding ways to anchor things with other parts of my body so that my working hand can then get at it and work at it. My friends were impressed when I said, “I'm hungry, and I'm going to go make myself a sandwich.” One of them got up, and I said, “No, I'm fine.” They were impressed with me sitting down and putting the peanut butter jar between my knees so that it's steady and I can get the lid off it. Again, it's the little things. Opening the pill bottle is—you have to put it down on a hard surface, then use my hand to really smush the cap down and twist at the same time, and then I can pull it up. Like I said, that one doesn't always work on one try.

Taylor: 37:38

That seems challenging. But I can see what it's like because they're built where you need two hands, so it's interesting to figure that out with one.

Sarah: 37:52

That one took me a long time to figure out. But I can open a bottle of soda with one hand. I can get the top off it. I probably just kept trying with that until I could do it, but again, I anchor it in my weak elbow or put the bottle between my knees so that it's anchored. Somebody with two hands would just anchor it with their hand. I just have to anchor it somehow. I've been doing this for 25 years now, so I don't even think about it anymore.

Taylor: 38:34

Well, it's really cool that you figure out those ways to get those things done. What I love is that you seem to have a very healthy outlook on it. I was wondering, has your mental health in that regard always been like that? Or has it evolved over the years?

Sarah: 38:55

Well, I had a lot of mental health issues in my teens and my early 20s, and definitely when I first got the news that I had this thing in my head and they were going to have to do brain surgery. I was living with my father at that time. I kind of went downward with the anxiety over all that, and my father had to call my surgeon and say, “Can you find her a therapist too?” After the stroke, yeah, there was a lot of therapy to talk about, again, life being off the rails and what happens now. I don't remember this, but my first night in rehab, I apparently told the nurse who was helping me get ready for bed to just leave me alone because I was never going to walk again anyway. But in the morning, when I woke up and realized that as much as I hated being there and as much as I hated what was happening, I could stay in bed and be reliant on people having to help me do things like get to the bathroom for the rest of my life, or I could get up and give this a try and see how it went at least. I just had to keep making that decision over and over again during the times when it got tough, until my outlook about this being life now got more positive and I could look for the gifts. This is kind of the work I would like to get into now because I didn't really have someone—I had a therapist, but I didn't really have someone saying into my ear specifically, “Okay, you're disabled now, but it's not over. You may not be able to work in the area that you wanted to work, but you can still work with disabled people, maybe just not in the way that you wanted. What do you want to do? What do you want your life to look like? There's a way to do that. Just think about that.” I'd like to help more people see that, yeah, this is different, but it doesn't have to break you.

Taylor: 41:38

I love that goal. If that takes off in any way, I'd love to stay in contact and stay up to date on how that's going. I'd love to support that, for sure. That would be impactful for so many people. We talked about how you anchor things and figure things out in creative ways, and I would imagine, similar to me and others, there are times where it can get very frustrating. Since you're in such a great place mentally, at least being open about things, are there any coping strategies or anything like that that you use on a daily or normal basis to help regulate?

Sarah: 42:29

I think especially as I'm getting older—I'm 48 now—my body naturally slowing down has interacted with the disabilities to make it harder to get around a little bit, especially in winter when there's so much snow and ice in the area that I'm in and my balance isn't so great outside. That can make some days hard. I try to keep looking for the gifts in this. I'm obviously in a very privileged place when it comes to disabled people in Canada. My housing is secure. I'm in a small community where people are supportive. Everything that I need basically is a short walk from my apartment, and I'm fairly healthy, all things considered. Approaching a situation where someone is disabled with gratitude and trying to look for the positive things is very difficult. I've been in that mindset as well. But if I've had trouble getting to work that day, then I try to focus on the positive: I had a lovely conversation at work with someone that I hadn't seen in a long time, or I got a ride home. I got to go grocery shopping, and someone offered me a ride home, so I didn't have to call a cab. Even those small things can really make a day. I try to be as grateful as I can for the many things I've been given because I've been very fortunate.

Taylor: 44:22

Yeah, and that's lovely. I always try to encourage people. I know the situations we can find ourselves in, whether it's caused by a disability or anything else, like situational stress or family loss, focusing on the positives in life can really help, especially on the mental side. It's a lot easier said than done, but I think you made a beautiful point talking about focusing on the positives and finding the joy in certain situations. At times for me, I can go in a spiral thinking about how having blindness has made things more challenging. But then I also think things like playing hide and seek with my niece have gotten a lot more entertaining. I think that's a beautiful point, talking about finding the joy and finding the good parts of your day and focusing on those and not focusing on the negative, which again, can be a lot easier said than done.

Sarah: 45:30

Yes, it's not always easy to do. But if this hadn't happened—and I wrote about this recently—my father, who lived in the community with me, died last year. If I hadn't had the stroke and hadn't had to come back and live here in the community where I grew up and where he was also located, I don't think I would have gotten to know him as an adult in the way that I did. That turned out to be a real gift, something I'm very grateful for, that my father and I were able to have that time together before he died. Things like that. I swore up and down I was never coming back here again, to this town. Then I had to, and that was hard.

Taylor: 46:33

But there have been real gifts in it too, and that never would have happened. Do you think moving back to a place you were really familiar with helped, in terms of being in an environment you're comfortable in? Do you think that was helpful?

Sarah: 46:57

I think ultimately it was. I don't think I appreciated it at first. There's probably more now, but when I came back to the town I'm in now, there were about 5,000 people. Like I said earlier, they'd watched me and my sister grow up. My mother had been a teacher in the high school, and a lot of them had been taught by her if they weren't in high school with me and my sister. When I first came back, I didn't use my wheelchair in town here because I didn't like the way people were looking at me. I felt like they were looking at me with pity, and I didn't want that. So I only went to places where I knew that I could walk with my cane. I felt like the looks I was getting then were bad enough. But having been here now for 25 years, I'm starting to understand that what can feel like nosiness, getting in your business, being watched by everybody to see what you're doing, who you're dating, and where you're going—that's one side of small-town life, yes. It can feel suffocating. It can feel like you're living in a fishbowl. But there's another side of it that's also the community. When they see that you're on the side of the road and you've fallen, and I have no memory of this, they're the ones that will pick you up and take you to the hospital.

Taylor: 48:51

I understand that feeling of being in a small town. I'm in a small farm town myself, pretty much grew up my whole life here. After everything happened in my life, everyone knew me for that. I used to have to get around in a wheelchair because I had severe muscle atrophy, especially in my lower body. I understand that feeling of being under a microscope when you're in public and people are viewing you in a certain way. It can be challenging because it's something that you or me or whoever might need to be independent and get around, but at the same time, the thing we need to use can hurt us in certain ways and make us feel like we're being judged. That's just an unfortunate thing that a lot of people struggle with. I think you nicely pointed that out and called attention to it. Just because people are in those situations, like we were saying earlier with identity and how it ties into who we are, our disabilities don't define us. But in those situations, it can be challenging because it feels like even though we know it doesn't, we always have that in the back of our minds. Is that how people are associating me? Is that how they identify me? It can be really challenging.

Sarah: 50:27

Exactly. The first blog that I wrote—the one that's not online anymore, The Bad Dead—it was called Girl with a Cane, because I figured that's what people who didn't know me, the people who had moved to Haliburton and had no experience of me, didn't know who I was and had no experience of me as this person that they saw downtown the odd time, who looked pretty young to be walking with a cane, but there she was. “There's the girl with the cane again.” That's what that blog went by. It seemed to resonate with people who had movement disabilities, that your identity gets so caught up with the mobility aid that you're using.

Taylor: 51:17

Yeah. You said it's not available anymore, but if you still have it, I'd love to read it. It sounds really impactful and like a great read. If you're willing to share it, I'd love to take a look at it.

Sarah: 51:34

I downloaded all the entries, so they're around somewhere, but once I actually started doing, admittedly, part-time work, it got too much to keep up. But I'll see if I can find the entries, for sure.

Taylor: 51:51

Yeah, cool. No pressure, but if you would like to, I'd love to read it. Even if you wanted to, we could put it in the show notes for others to read, only if you want to, but just something to keep in mind. I feel like we're doing well on time. To wrap things up, I'm curious: if there was one thing you could share with someone going through a similar situation, what would that be? Feel free to take time to think about it if you want. I know it's a loaded question.

Sarah: 52:24

I think it would be that for someone like you and me, who goes through this process of having to adjust to acquired disability and having to navigate the reality that comes after, it can be really overwhelming at first because it's such new territory, but also because there's a grieving process involved for the life that you had before and for the life that you thought you were going to have. I think for a lot of people, I know there was for me, the people that you thought were going to stick around and didn't, for whatever reason—maybe it's because they don't know what to say or they don't know how to react, or it could be a multitude of things. It's okay to feel sad and angry and unsure and overwhelmed. But it's also okay, whenever this comes around, to feel joy too, to expect to feel joy, and to feel like you want to live again. You want to get back out into a life again, whatever it looks like, even if it doesn't look like you thought it was going to be. There's still a life out there full of possibilities for relationships, employment, love, purpose, and meaning, and we're entitled to it as much as anyone else. So go out and grab it when you feel you're ready. If there are accessibility issues in the town you're living in or the place that you're living, talk to people about how they can be addressed because you deserve access to that too. We all deserve to have a life that's good for us, the best life that we can live. That doesn't go away because we become disabled.

Taylor: 55:08

Yeah, I love the way you put that, especially talking about the grief of the life you had before and how it's not going to be the same. I think that's something I never even really thought that I went through until you said it, and I was like, oh wow, I realized I did go through that. I just blocked it out. That was really interesting that you pointed that out. I think that's a really interesting insight into what it's like to go through something like this, especially a little bit later in life when you attain something like this. Thank you so much for sharing that. That was really, really beautiful.

Sarah: 55:51

I didn't realize that I was doing it either. I think I was pretty numbed out. It took me about six years before I finally started to think, you know, I don't want this to be this way forever. I'm ready for what comes next, whatever it is.

Taylor: 56:12

Well, I for one am excited to stay in contact and find out what's next for you. I'm really excited about that. Talking about mentoring people who are attaining these disabilities and guiding them through that process, I would love to see where that goes and maybe read some of your previous blog writing. That'd be cool as well. Thank you so much, Sarah. It's been wonderful getting to know you, and thank you very much for sharing your journey and your insights and day-to-day life and what it's like for you. I'm sure there are going to be people who watch this who learn from your situation. Thank you so much for joining us and sharing with us.

Sarah: 56:55

Thank you so much for having me. This has been great.

Taylor: 56:59

Yeah, absolutely. All right, and thank you all so much for listening and/or watching. I really appreciate it, and we will hopefully see you for the next episode of Day in the Life. Thank you all for joining us while we explore accessibility and disability. If you enjoyed this podcast, check out more episodes and show notes at accessiblecommunity.org slash podcasts. Remember, be accessible, be inclusive.