WhyWeWork BrianVee
WhyWeWork BrianVee

Episode 69 · 1 year ago

#69 Alison Hayes - Thriving While Disabled - BrianVee WhyWeWork

ABOUT THIS EPISODE

Alison Hayes talks about her ability to thrive while disabled, since she has been diagnosed with a Functional Neurological Disorder (FND). Her mission has been to help others with disabilities and allow them to realize that they can, too, thrive while disabled.

Alison has a special offer for people who are working:

https://thrivingwhiledisabled.com/are...

Contact Info

Alison’s Profile
linkedin.com/in/alison-hayes-aa89049

Phone
732-598-0213 (Mobile)

Email
alisonbhayes@gmail.com

Facebook
https://www.facebook.com/thrivingwhil...

Twitter
https://twitter.com/thrivingwdisabl

About

"I have spent years building experiences while struggling with societal response to my identity as a person with a disability.
I have decided to put my life experience and educational background to develop a space where people with disabilities can go to empower one another by sharing their personal experiences, skills, and knowledge.

People with disabilities are a marginalized group that tends to be socially isolated and are not consistently able to participate in larger society due to the ablist perspective that many people embrace.
People with disabilities are often painted as victims or as objects of inspiration, rather than the multifaceted people that we are.

Hours Well Spent will become a space for cross-identity learning to help us become a more cohesive group. We also hope to become a space to connect individuals with disabilities to resources that are truly committed to empowering our community.

I also maintain a blog, Thriving While Disabled, which offers insights and suggestions for managing issues that a majority of the disabled community likely experience. " (LinkedIn, 2020)

...welcome to why we work with your host Brian V. As he speaks to people like you from all over the world as we together dive deeper into our motivations, struggles, joys, seemingly missteps, hopes, warnings and advice, which would be an encouragement to us all to get up. Get going on, keep on working. Working is tough, but working is good. Now here's your host to why we work. Brian V. Um, Brian B. And this is why we work today. I had the great pleasure of speaking with Allison Hayes. Alison is engaging and connecting with people with disabilities. She herself has a functional neurological disorder, but it's not stopping her. She's still working. She's still striving. She's still pushing forth. And I want to find out why. I want to find out why she's able to keep on going. Thio Keep her chin up and find the joy in the every day. Join me in my conversation with Allison Hayes. I'm Brian V, and this is why we work today. Have the great pleasure of speaking with Allison Hayes. Good morning, young lady. Good morning. Thank you for coming on. I just did an introduction to you would you like to give us? Just, like fill in the blanks where I probably miss? Because I don't You don't do them that well. Um uh, and just say a little bit about yourself and what you're doing nowadays, and then I'll take us back. Correct? Well, I'm Alison. He is I have a condition called functional neurological disorder. Um, which is a relatively common but rarely properly diagnosed neurological conditions. It expresses a lot of different ways, but my case muscle movements. Um, I am currently running a website called Thriving. Well disabled. It is a, um it's a blogged, but I also offer coaching services for people with disabilities toe help them to manage their medical care. Thio work within the U. S. Health care. Um, right. Work within the entire U. S. System trying to help people with their disabilities and help them find the way through wherever it is. Um, you can guide them best. Exactly. And so my thing about it is becoming disabled. And also actually using the U. S. Social locker system is a really emotionally negative experience that trains towards enforced dependence on. And I'm trying to help people break out of that and regain their passion, regain their sense of purpose and be able to with a better life. Because I think one of the big problems with the systems is that they destroy the words self efficacy, which is the belief that you can do things. And that's what manage the most. That's I mean, that's great Thio to be able to have first hand experience. And I think a lot of people, one way or another, get some experience like that, whether it's directly or through someone else, and they realize the dependency that people begin toe have on it, and then that kind of enables them to go down a path that is inescapable becomes a bigger it becomes a bigger hindrance to them than maybe the issues that they're having it can. I think part of the problem is, um, mental health. Mental health isn't treated very well. Uh huh. And so, uh, there's so much stigma around mental health that a lot of people with disabilities can't And a lot of people, honestly, who are poor in general, can't get the mental and emotional health support they need to be able to take that next step to recover, to move forward with their lives because they're so traumatized by these various experiences. Allison, I'd like to get into this a little bit more. A little bit later. But what about you? What about getting thinking of the name of my podcast of why we work? What would...

...have been your very first job? Maybe it was a teenager. Um, maybe, uh, okay. Fall making a dollar somewhere. Or maybe not. Maybe volunteering or I actually, my first job. I was a page. What is it? Page? I'm a page at a library just to make it okay. You okay? I still don't know pages, though. Sorry. A in a book. Oh, yeah. Page within a book. But also the pages job is to go through in library and put all the books away. Like you know how when you go into a library and you check out a book if you don't and when you return it, it goes on that cart in the corner. Hey, just job is to take I did not know, but, um, away. Yep. I know they had a title. I thought that you were just the library. And as well or something. Yeah. No, no, no. We're definitely not librarians. Um, that's a job that they usually higher, you know, high school kids for we run around and put the books away. So, how old were you when you first became a page? Can't remember. There was a junior. There was a junior in in in high school. So that was your very first position. As as a junior. What? What made in high school? What? What made you go and get that job? Oh, I figured it was time to start working. I mean, I just, um I I kind of you know, I was doing well in school and moving forward, and I was like, All right, well, I'd like to have some money. I'd like to take care of myself a little bit. Wow. Okay, this is this Sounds like an awesome job. So this was your own motivation to earn a dollar thio going. And you saw that. I mean, thinking of my audience and people who would listen. Not all people are pushed out the door, Right? Thio, go get a job. But some people and I always love this where people say I wanted to go get a job. I saw This is a necessary component of my life. Even, you know, great 11 of school, which I think is is admirable to get a job, but also see the reasoning for it. Why did you pick it within the library was that you were a fluent reader. You enjoyed books? What was What was the drive towards that? Basically, Yeah, I am a really big reader, and I really, um and a friend of mine had the job and he told me about it, and he was a little, like, not in love with the job. He's like, Yeah, yeah, I put the books away and I'm like, Oh, my God, that's the perfect job. I think it would be an interesting job, actually. I mean, you could learn a lot, you know, you could learn some things. And if you want to dive further into it, then you mean there would be a lot of things I wouldn't know by these books that I'm picking up. Like, really, there's a book on this. Oh, yeah, and And it was funny because I was they would get frustrated with me because I was very. I was relatively slow at returning the book and, you know, coming back because, like, the time things by, they sent you out with a cart. And how long did it take you to come back? And I was really slow and they were getting frustrated with me. And then they, like, checked my work. And what I've been doing, why I was slow was because as I found things, Miss Shelled, I pulled it out. You're reorganizing the show. Well, I mean, look, no, I mean, I was I was doing putting them back in order, right? Exactly. I was fixing other people's mistakes, and that's why it took me so long. So they actually ended up putting me in The Government documents section, which is its own, like, fascinating thing Gove Docks is you have to be really, really precise with putting those books put, putting government documents away because the system doesn't make a whole lot of sense. There's actually three different systems. There's the federal, their state. There's county, and the government documents are all of the things that the government publishes that are available for people Thio look at hidden in the back of the library on, and it's not accessible to the public directly, because again, the organization system is super persnickety. But, um,...

...yeah, it ended up being my job to put those away. How long did you keep this job for? Until I graduated. Um, basically from high school, You mean for a couple of years. So as you were doing this in high school, did you start toe have, ah, clear idea of what you wanted to do after high school? Well, um, I knew I was going away to college. I'm privileged enough that there was no question I was going to college, and I knew I wanted to go into biology. For what reason? Um, I was one of those kids who went out in the backyard, and I was really little and flipped over the stones toe Look at the bugs bond, figure out what they were and how they interacted with each other. I It was very much a nature girl, and, um, it just kind of made sense to me. I was also really fascinated by genetics, And, um so, like, in high school, I took extra science classes, took extra biology, took you know, and and it just felt like the right direction for me. Seeing that you're hanging out at the library a lot. It kind of all fits. It's well, So were you going to go far for college, or were you staying in your hometown? Oh, no. I went about halfway across the country. Um, Freebird, You're gone. Oh, yeah, Yeah, I was I I wanted my space. And so yeah, I live in Central New Jersey and I moved Thio Appleton, Wisconsin, for college. Lawrence University. Had you been that far by yourself prior to that point? Yes. Yes. Um, you had experience with going away. You were fine. I had some experience with going away. And, um, Wisconsin was actually somewhere my family had gone, um, on multiple vacations. We've had summer cottage in Wisconsin, and so, like, it was a very natural to me Thio to go there. It just the program really spoke to me. Andi the it was It's a small, cute little campus, and I wanted to be at a smaller institution. And when I visited, I just kind of fell in love. Did you work while you're in college? Yes, I did. I I briefly worked in the eye for for computer services. And then I found my way back to the library and, um, I went in and I said, I have experienced with a za page and government documents and they're like, Oh, here's our government documents person And she was like, Oh, my God, you've done this before. I'm like, Yeah, it's what I did in high school and she's like, Okay, yep, you're hired. I like to know I've seen in my university days are in our library There was four or five, maybe six floors because the higher you went to study this murder, the person waas But the people who were on the first floor usually we're not there to study. It was more of a social social gathering. From a page perspective. You know your perspective. How did you find the student? Maybe this the college you went to, they were all studious. I'm not sure, but be working like the bird's eye view of being, I would say library in, but a page. Um, just you would be smart to me, so that would that just covers everything to seeing these students interact and study How did you kind of see them doing? I mean, obviously thinking that you did well in school and and seeing these students interact and especially being away for the first time and maybe even just finding a library like I did for the first time in university, kind of being forced to learn to study. How did you find them in the way that they approach their studies. Well, it's interesting, because, like, I didn't interact with many fellow students at the library. I mean, um, we had enough computer access and things like that that you didn't have to study at the library, so it was relatively empty. And then the other part was government documents are always, like in the back corner out of the popular section, So yeah, so I was So you know, basically it was me and...

...the books. Yeah, and I was just sitting there quietly, stacking, organizing and putting away. Unfortunately, it was a very quiet type job, though I like did your You know, your college have the same sort of split with the main floor was more socializing. And then 2nd and 3rd kind of plateau towed into more studio students? Or was it just quiet? Generally? Well, it was quiet, but they design it that they also design it that way. There's there's little carols for people Thio study in on the upper floors. Bond, then on the first floor. It's a very open floor plan so people can talk. They're ask questions. Find the, you know, fun what they need, that kind of stuff. So it's, you know, it's one of those things where the first floor is the space to be social. If you're going to be social in library and then the upper floors are where if you're studying, you're studying and you've got I mean the you know there's wall, there's little. The carols were like little walls. They were like nooks for people to hide in with their books. And, like I did notice, there'd be places where there's collections of books that at least appear to be. You know, somebody was doing a really deep dive into something. E did a lot of napping napping up in those 2nd and 3rd floors. It was so quiet. If you're getting a nap, go back to your dorm room. No, you're right. Sometimes that doesn't work either, depending on your roommate. So as you were progressing through college and working as well, when did you start to? Or maybe it was prior to that figure out what you wanted to dio or what were some things that you thought about doing after graduation? Well, I initially was planning on going into, um, genetics. I, my advisor, was, um my advisor was focused on genetics. I, um I took multiple genetics related courses. I was really heading that way. Um, but the lab work for genetics. It's really boring. It's It's painful. It's, um micro pipe headers on Do you know, really precise measurements that you can't tell if you got it. And it just really turned me off. And at the same time, um, I did a couple of ecology courses and loved them on going way back as a kid. I was very much a nature girl. I was out in the marsh. I was, you know, looking at birds, those those kinds of things. And so what I ended up doing waas focusing on, um actually, the biggest one was I volunteered. Um, my freshman year of college. I volunteered with the National Marine Fisheries Service. Um, they had a big Well, um, they have, ah, lab near me field station. Really? And I spent the summer with working, you know, volunteering with them. And I loved it. I absolutely loved it. And so I had this internal war after that. Genetics or, um, marine biology, fishery, ecology. And by the end, I'm like, Nope, nope. Sure. Ecology wins. That's what I'm doing. So did you go on? I think I read that you went on to get a masters as well. Who is there a gap in between there? Huge, Huge gap. Life changing. Yeah. So what was what was the life changing? My my my FND diagnosis. So how long? How long did that happen? After your initial degree? Uh, my f indeed. Symptoms started my junior year of college and then went into remission for a few years. I, um I like I said I decided I really wanted to go into fishery biology. Andi. Uh, so my senior year, I went to the Marine Biological Laboratory and studied there for a semester and then went on, um, it's been a spent a term in London. And then when I came home from From that, um, I finish off my degree and then came back to New Jersey toe work for, Ah, the field station in South Jersey. So you were dedicated. This is this is...

...what you wanted to dio at that point. Yeah. Andi, I went to the field station. I worked there. Um, I loved the work, but I felt like some of the ways that they were managing things was dangerous. Hmm. Um and so I ended up leaving that lab, and I did a lot of I did education work. Um, I did that most of the summers after college. And, um, I got I got myself set up teaching kids about marine ecology. Mhm on, you know, just hung out on Sandy Hook, where the National Fisheries Service lab waas and, um, just kept finding little jobs. That that worked in the Marine ecology field was great. So at that point of finding little jobs, were you still looking for a career? Were you finding that your symptoms were ebbing and flowing or rising and falling to the point where you weren't sure if you could commit to a job? How, what was going on or you just couldn't find something. Oh, it waas I was getting. I decided that six months after graduation, I was going to go explore Australia. And so I was taking whatever work I could to bring in little bits of income so I could go to Australia, and I did. I ended up actually working briefly in Australia for, um, the Western Australia Marine. Um, Marine Management Laboratory was called, um, Andi. I worked there for a couple of months while I was in Australia. Andi, I was cutting up bluefish. Odalis, of all things, um, Odalis are the inner ear bone of a fish. Okay, you know, small slice. I don't know. That's it. Oh, their time. They're tiny. The total is itself is something you know you'd like gently hold between two fingers on What? What? What? The thing with the Odalis is kind of like a tree ring. It tells the story of the fishes. Mhm. It's something that's always growing. And so the And so What they would do is you take the Odalis in case it in resin and then cut the resin Mhm that you end up with this little tiny sliver that you could then look at under the microscope and you could count the rings and see the life history of that fish. And this you went to Australia to do this Or you found that when you were there, something in between Basically my contacts at the national mean fishery lab knew somebody who was in Australia. And so when I said I want to go to Australia, they said, Okay, contact this woman and maybe she can give you a job. That's exciting. That would be an exciting experience. Oh, absolutely. And so I did. I reached out to her and, um, she responded maybe a month into my trip and said, Um, yeah, I can hire you in a month. Come on over. I think those those types of trips air good for people's e mean you mentioned you went to London is Well, um, but especially university students or any anyone but taking year off, figuring things out, you know, maybe even diving deeper into the thing you want to do like you did. Did you have a plan for after Australia or you even considering staying there? What was your longer term plan? My longer term plan. I actually was thinking about applying to grad school for, um, yeah, for Marine, for officially biology. And I wasn't positive. I got one or two applications out before I went. I talked thio potential lead somebody who might be hiring, like, you know, hiring for a master's pro masters. Um,...

...no, I can't remember the right name, but basically, it was a position that was for a master student. So if he hired me, I was I was in as a student. Um, but what ended up happening was when I was on my way home and I got the interview, I started shaking, and my symptoms came back a little bit. Okay. And, um, I ended up saying to myself, You know, don't want to do grad school yet. E don't I know that's what I need to do to move forward in my chosen field, but I want to take a little more time, get a little more interesting experience, you know, that kind of thing. So your symptoms sorry for your symptoms at this point, where they as severe, is they've ever been with a dream or they were just minimized and Okay, I didn't have a diagnosis. I didn't have a diagnosis at the time. Basically, what was happening was I would have these short period of like, full body. My whole body would just shake. And what I'd been told while I was in college was, Oh, it's anxiety. Here, take this medicine and maybe you'll feel better on it was dismissed. It was downplayed. And, uh huh. And for me, I had what they I Basically it's called La Belle Indifference. It's this very blase attitude about the symptoms, and for me, I was just like, well, whatever it shake, I'm shaking. It's annoying, but I didn't like panic about it. I didn't get really upset about it. I was annoyed that I had these, like, these periods of like, full body shaking, but I didn't think of it as anything other than annoying in the moment, were they? This is for listeners of people who may be experiencing something where they triggered by something, or would they come out of nowhere? A swell. It's stress. It's stress associate ID. What would have what it was was like, You know, I've been exploring and meeting new people, and this is like my wheelhouse here. I was very social, very outgoing. And so I was, you know, cool. I'm meeting people on going places. This is great. And then I was interviewing for a position for a master. You know, take my masters and my body is like, No, you don't want to do this. And so I had this whole s So I had these shaking episodes around the interview. And so I'm like, OK, my body is telling me maybe not yet for the masters degree. Cool. I'll go do other things and come back to this. Hmm. So what did you do while you wait It I I found this job. That is my favorite job ever. Um, I was working as a fishery observer on the Gulf of Mexico. Yep. I know that's a nice vacation spot for a lot of people. Think. Yeah, it wasn't exactly a vacation. What I was doing was I was literally living on board shrimping boats, mhm and, um, doing a little bit of helping them with their fishing. But mainly, my job was to do species, uh, surveys and look and collect samples from their catches and see how and use that data toe Help the larger team see how effective the by catch reduction device. Waas, Um, as the environmental thing, the shrimping is kind of one of the most wasteful, um, industries as faras sea life it They dragged their net across the bottom of the ocean floor and pick up everything and most of what they pick up dies. Um, because they dump it on the deck of the ship and then sort through it during the shrimp pond. Then eventually they shove it all overboard. But by the time it's overboard, anything that you know needed water to breathe is dead. So it was a good job, but it was enlightening as well. Thio. Yeah, And so I loved it because I was out on the water.

I was just surrounded by, um, all different kinds of really cool creatures I've never seen before On my job was to figure out what they were and help them and, you know, certain species that were important for game it would be weigh them and measure them and get extra information. But it was all, you know, sit out there and go through fish and get to know you know, get to know them. And it was awesome. I loved it. Did you ever have to sleep out there or did you just 00 yeah. Way were out to sea. Yeah. First trip. We were out for 21 days. Really? Oh, yeah. So I was living on the ship. And how long did it take you to get your sea legs as they call them for you. Okay. Oh, no, I I puked. Um, but it would take me a a day or so. Thio kind of re stabilize myself. Um, it was mainly we were in a river, and then we go up the river into the depths of the ocean. And it was, you know, in the river was fine. I'm like, Oh, yeah, everything's good. And then we'd hit the chop of the ocean and, um oh, yeah, my first trip. I was leaning over the edge, just holding onto my glasses so I wouldn't lose them overboard on, uh, one of the guys in the crew, like, came over and like, gave me a paper towel. And I'm like, Thank you. Um So how long did this go for? Until either Yeah. Symptoms increased or you decided to get your masters. Well, what actually happened was the job lost funding. Okay, it was the end of my second trip. And like, I basically went out between Thanksgiving and Christmas. And when I came back to sure, I had just invested in my first apartment with a good friend of mine, and I was assuming this job was going to go on for a while and I was like, Okay, I'll take a year or two or whatever and do this job, and this will be great. And, um, when we drove back Thio Galveston, which was our base for the job, basically, they're like, Yeah, we we lost funding. And we don't know if this job is going to continue. And I'm like, Oh, okay. And they're like, Yeah, we're going to try No. Okay. And I was left with this really, really deep uncertainty. Did that also increase? Um, stress in your life is well, Absolutely. And that was when the symptoms really um, started coming back. It was that I'm really deep uncertainty. Do I have a job? Is it going to continue? I love this job. I'm willing to hang out and wait a bit for this job, But is it going to continue on? Um, yeah, well, im and so basically, I came back. I moved into the apartment with my friend, and I had no idea how I was gonna keep paying for it. Um, but, you know, I hoped and figured that I'd have work again. I just didn't know what the way it was going to be. And I wasn't I didn't think about applying for unemployment. It just never crossed my mind. Um, I was young and inexperienced, you know what I mean? Like, I just I didn't think of that. And, um, well, and the other part of this is most of the work in my chosen field is in the summer season, like, yeah, very seasonal. Most fields tech lab tech type positions start spring in the summer and end at some point in the fall. And so I was going into January, and so there was nothing. Um, that was a year round job. It just lost funding. So I didn't you know. So I wasn't sure what to do with myself and that uncertainty, um, ended up triggering, um, new symptoms I started having urinary problems and just constantly needing to go to the bathroom, and I didn't know why. And I started going to different doctors to try to figure it out, and...

...nobody had a clue what was wrong. Um, and so I basically ended up spending the next several months. It's like, really uncomfortable and trying to figure out what was happening. So it was like this. Um, I started noticing the increase in, like, January into February, and so by March I was seeing doctors and just trying to figure it out and go home. But imagine that it's progressively getting worse, too, because the uncertainty is increasing. And no, no job even longer. No money, no all of these problems. So then it's not getting a solution. So it z just ramping up for you. I could only imagine that it was It was really hard to to manage at that point. Exactly. And so it was just this I would just I didn't know what to do. And I didn't know why I was having these symptoms. And it was just feeding, feeding on itself. Really. Um, they did end up calling me with a job. But at that point, I oh, I was being catheter arised to try to figure to try to give my bladder a break and literally, they're like, Yeah, come out this come out on Friday. And I'm like, um, I'm getting the catheter out on Friday. I can't be on a plane to, you know. And so I ended up saying I can't and they never called me again. Uh, and, um, I was like, Okay, now it's starting to head into spring, and I'm like, I'm going to find a new job. That's what I'm going to dio I'm going to ignore the bladder stuff. I'm just gonna find a new job because I don't know what else to Dio, and I did. Um, I started working in South Jersey, um, with a group that was studying red knots. And so I was red knots or species of bird that's endangered. Um, it's pretty cool. They migrate between Tierra del Fuego and and Alaska. Not last guy. Sorry. Uh, the North Pole. They messed up there, and they and they winter. It's interesting you're staying through this time pretty consistent with your job search, right? Oh, absolutely. You're right. I had periods where I was just like, Oh, my God. But I was trying to distract myself, really? So I was keeping an eye out. I interviewed for a job at the National Marine Fisheries Service, but they weren't getting back to me. And I ended up getting hired, um, to do the red knot job. And I did. For I did that job for several weeks. I loved it. And then I found out that I had enought that that the National League Fishery Service was willing to hire me, and it was a better paying position that was much closer to home. And I was very interested in doing that. Um, and I had a couple of other, like, positive stresses. I had a friend, my first friend, who was expecting a child, gave birth to her baby andan other friend. We set up a birthday party for him, but at the towards the end of that birthday party, like, everything happened that one weekend, you know? So, yeah, could you explain positive stresses? Sure, Sure, Sure. Okay. So usually when people talk about stress, you think about it as a negative thing. The, you know, stress of worrying about losing your job, the stress of feeling sick, those kinds of things. But there's also what they call it the use stress, positive stress bond. That's excitement. That's, um, you know, when you've got a job and you're in the flow, that's a form of you. Stress, positive stress. Anything that gets your system going a bit but is positive is hopeful. Is energizing senior friends for the first time in a while. That's all positive stress, and our bodies actually react to it in a similar way. Like there's endorphins flowing. There's energy, all those things. And so my symptoms are actually responsive to positive stress as well as negative stress. So your friends having a baby and your symptoms air...

Peking, things go up? Yep. And so all of that together, Um, after, you know, we're at my friend's birthday party and the body just like Nope. Done. And I My whole body started just a little stronger than trembling, but shaking every inch of me. It was just shaking, shaking, shaking, and I couldn't stop shaking, and more so than it's your body has ever shaped prior to that, usually in the past, it would be, You know, I Jake, for like, 30 seconds on, then it would stop, or I'd have, like, these violent movements where my arms would go out and that would happen once or twice. And then it would stop. This was continuous, violent, whole body treme oring, and it was kind of this. I can't ignore this one. I don't know what it is, but this is weird, and I don't know what to do now. And what ended up happening was my boyfriend at the time, took me up to my parents house. And then then I called neurologist that I'd seen when I didn't have any symptoms. I'm and said This is going on now what? And he said, Okay, I think it's time come into the hospital, will do some extra testing, and we'll try to figure out what this is. And, um, I did, and they couldn't figure it out. They did Emery's. They did NGS, um that all of this testing, but everything came back normal. So was this your very first time? Your very first serious testing to find out at this point? I mean, you went to a neurologist prior to that. But was this Please tell me what is my problem? Sort of situation. Yeah, it shifted from Okay, this is weird to something's really wrong. Let's figure this out. So between that time and when you finally were diagnosed, how how long was that period? Mhm. It was very short. Was about, uh, to two months. Okay, so they were able to diagnosis. But after a few different doctors and yeah, it's zero, but two months. Yeah, so? So basically what it was was the testing all came back normal. And the colleague of my neurologist who is on hospital duty that week, she came to me, and she's like, Look, this looks like a movement disorder. So I want you to go Thio the Center for Parkinson's and other movement disorders and see one of the neurologists there. I think that they might be able to figure this out, but we're focused on seizures and such. And it's not that it's something else. So I took a few weeks to get in, but when I got in, that neurologist was able thio diagnose me. This was the third or fourth neurologist I've seen since my symptoms started, and he was the first person who was able to actually identify what was going on. So since being diagnosed uh huh. Have you been able to keep a consistent, um, full time position job? No. Um, I have not held a full time position sense right after I was diagnosed. And they let me go after a month or two. And how long ago was this not to aid you, but I think it's near 2015 years, 15 years. So for 15 years, you're you have not been ableto keep a full time position. What is the reasoning behind that? Basically, my FND is stress responsive. So the more pressure I put on myself, the more I try to do, the more likely I am toe have symptoms, and the more likely they are to be severe. So what I found is, every time I work or try toe work, I'll reach us a point where either the job stress or my life stress triggers some really severe symptoms. And then I...

...can't keep doing the work for at least a why. So even though you have not been able to work with, they haven't been able to work full time. A lot of part time. Is there something most recently that you've been doing for a longer period of time? Or is it just every once in a while periodic? Well, I've been okay. I've been running my blogged for two years, but I worked in a different field geographic information systems for you. Pick some pretty tough jobs in the first place. I think I would be stressed to its thing. So maybe, I don't know, Go back to page. I don't know. Whatever those air tough gigs. You're on the, you know, the shrimp boat. That can't be easy. Oh, yeah. No, I couldn't ever go back to something like that. Unfortunately, like I said, it was one of my favorite jobs. But it's not something I could do with the way my symptoms work, because the reason I had to leave fishery biology was because the work was either a field work where we're out tromping through the marsh or running on the beach or various things that have, like, physical demands combined with having to do really, um, fine detailed work. And my, and trying to do focus, detail work, my hands would shake which is annoying but really that if you're like holding a live animal on E love, you shaking right? And so you know the and then if you're doing laboratory work, is usually very fine. Fatally stuff, too. I remember trying to watch glassware under a fume hood and you know, so we're working with stuff that's pretty dangerous anyway, right? Just, you know, is one of those. If you spill it, I've seconds later it's through your outer glove, and within 20 minutes it's through your inner glove. If you wait that long and I'm cleaning glassware and the stress of the cleaning, the glassware, knowing that I'm working with dangerous chemicals was enough that I'd have a build up of stress and I could feel that I was going to start shaking soon and so I'd save Thio, my lab buddy who's under the hood with me. Okay, I need a twist break and I rip off my gloves back away from the table and shake. Nobody's playing over. You know, I'm not surprised that I didn't that they that they weren't comfortable keeping me. I was a risk. Understandable, Yes. So I shifted into geographic information systems because that was computer work. So if I needed to take a twitch break, I wasn't going to hurt anybody. You know, that was my logic. So it's it's good that you're able to have. I mean, I don't know how pleased you are with having a part time or periodic positions, but what you're doing now is workers Well, especially with your blawg and your active and going on podcasts and trying to engage and connect with people with disabilities. So can you speak mawr about that? What you're doing because that is the work that you're dedicated to at this point. Absolutely So yeah, So at this point, what I'm doing is I run a blogged, thriving, well, disabled. And it's a, um, it's all built around creating your best life. We're living with a disability, one problem at a time. And so I talk about the the social welfare system because that's I've been on the entitlements program. SSD. I sense shortly basically since, um, my Social Security disability insurance something yes, So that's the program that is designed for people who have a work history. Um, and we're working until their disability stop them from working and it basically gives me my retirement benefits now. And so I applied for that. Sorry. I mean, I hope you don't mind me asking, but is there a time when that when that will run out? No, that's well,...

...technically, it runs out when I turned 65 then I go on to Social Security. Okay. Okay. So I've had that as my base income through all of this. Yes. And I can work a little bit well on it, but there's a lot of limitations around him, basically. Mhm. So that's how what you're blawg is doing is helping people find the information so that they, too, can, for lack of a better way of take advantage of what's rightfully theirs and in their time of need. So, yeah, So the idea is with all of the social welfare stuff, these programs exist. There's a lot of emotional shame around applying for it because others such a high value placed on work and a lot of people with disabilities want to work. Wish they could work, but their body isn't letting them, for whatever reason. And so, um, I share the information about what the programs are and how they function and how toe be eligible and how to apply for them. E I saw. I think I misspoke at the very beginning when I said and you corrected me. But I wasn't understanding it as well of saying, People who get on sort of programs kind of get stuck in them, right? And you're you're kind of correcting me in having people who need them to get them because of that shame of, you know, Okay, I'm going to get this program. I really wanna work, but I can't work. So I do need this program and some people look down at people like that and and that I understand. Ah, lot better now what you're referring to oppose to people who are more able bodied and get in these programs and then become more lax. Today's ical or lazy and then don't want to get off their programs. And it's funny, too, because that's a huge contrast between two groups of people who one wants to work but cannot physically or mentally, then another group of people who can likely work. But don't And honestly, I think that second group is predominantly fictional. I'm not saying there is none of them, but that's Mawr, a story that people tell themselves to perpetuate the shame. Because a lot of people with disabilities it's not always visible. You can't help. Yeah, and one of the things that there's a lot of people with invisible disabilities, and we get shamed for using the programs when we need them. Yeah, so I just want toe. Yeah, I understand that I come from Canada, so I know people who use the system because it is their right and you hear of a lot of different people. So there's both right. I think there's the percentage, I have no idea. And no one no one knows someone's true hard or mind in these situations. And and, you know, you hope everyone the best anyway, right. And in some ways it it doesn't really matter as long as they're being taken care of. But there are people that abuse the system and and, you know, and sometimes like in Canada, for instance, with taxes so high, and if if you don't work, you could get almost just as much. Money is if you work a minimum wage job, and so the incentive is gone for people, and then they find themselves and other things but what you're referring to, but also considering, you know, there is Ah, what was the word that you you used before? Blase was a fair. Oh, okay. Well, well, I know I have, is Labelle. And what I've had is LA Belle indifference, which is not worrying about things even when they're severe. Um, but what you know, what I'm focused on is, uh, self efficacy, which is the belief that you can do things. And I think that's a great positive message. A swell and self advocacy is the thing that's most damaged by becoming disabled. That's also the thing that's most damaged by the shame involved because of the shame because and the negative connotation that goes with being on a disability and program program. Yeah, or worse, the because, like most of the programs were really built around being poor. So you have to prove how little you have.

You have to prove that you don't have any money in your bank account. You have very little. You have to prove that you haven't been able to find a job. You have to prove and the feeling is your proving that you're a worthless individual. That's that's a pretty horrible I don't know, rabbit hole or wormhole toe have to squiggle your way down just to say I can't do what I want to do. Yep. Exactly. And, you know, applying for disability is all about proving that you're incapable of taking care of yourself. That's what it is. That would be a horrible experience. It ISS And so applying for disability is a necessary evil, Hmm, for people who are in positions where they really can't work. Did you experience this yourself of? I mean, what did you experience in applying for disability? Oh, it za pretty painful experience. I was in a really I was on the border of a really deep depressive funk anyway, because my father had just died, which was part of why I applied. Um, my symptoms were really severe, and then my father died and I was an emotional wreck, and I was constantly symptomatic, and so I wasn't even capable of thinking about applying for work. I just I couldn't and I'd lost, you know, three jobs in a row because of my symptoms, and I just I couldn't e couldn't try. Yeah, And so what I did was I applied for, um, disability. And that is not good for your self esteem. That just was mawr. This wasn't a positive stress either. Oh, God, no, it's very It's very painful. It's very negative. It's basically tell us every doctor you've ever seen and what they thought was wrong with you. Explain in detail why you lost all of your jobs ever. And, um, then fill out all of this paperwork explaining what you can and can't do, such as. Can you use the potty such as, you know, can you feed yourself? Mm. And you have to answer honestly. But there's this pressure of If you don't sound pathetic enough, they won't let you have the program you need. Yeah, and it's not forms. There's probably a whole bunch of things like Oh, yeah, it just seems counterintuitive, the whole process. And if you're not, if you don't sound pathetic enough, they ask you more questions and question you further and make you see doctors that don't that think you're faking. Um, you know what I mean? Like, it's a It's a really, really unpleasant painful process. And so even me, who's got the strong work ethic that didn't back down that always was trying to push myself? I was really stuck for a year or so from you know, the combination of my life events and then reinforcing all the negative messages by applying for this program. I needed so upward battle the whole way, absolutely on do you know? And I've had times where I've been on snap the food stamps benefit. I've had times where I use the There's also it's called LIHEAP, the low income Heat and Energy Assistance program. I've had points where I needed those programs and points where I was too high income to be eligible for those programs. And, you know, applying is painful. It sounds like a grinding system where you're the one that's kind of getting eaten away through the grind. Oh, absolutely. And here's the thing because of the social mindset of maybe you're lying. Um, are you really that that off the the moral judgment of your poor, So you failed all of that together is what's going on in the minds of the people. Answering your phone calls is what's going on um with the people who wrote your application forms with the people that you're talking thio And so it ends.

Most of them are burned out, and so they're in this negative space and they could just tell you what you did wrong and what you need to fix to be able to get your application in. Like I've never had an application. Just Oh, you did it. Everything's perfect. It's always Oh, you didn't do this. This is wrong. I need this other piece of information. Here you go. It's not right. Bring it back when you've got it done right and that's the attitude you get. It's I don't know if I can think of it well enough, but to say if someone who's in a tough situation and it's not a new intellectual thing but for you to, for someone, toe have toe fill out all these forms perfectly would almost prove opposite of what they want you to prove that you're unable to do all of these things. It's like saying to ah, blind person, follow this course you're like, but I can't No, but you have to do it perfectly or we cannot help you out right, and that's that's the crux of it, if you like. It's almost this argument of if you're able to get the help, you don't deserve it. Get it all done, and they punch you and say No. Sorry. Yeah. I mean, I've actually heard I you know, I've heard I don't know if it's an urban legend or, you know, somebody shared it that they did it kind of thing. But this person dealing with mental health stuff who put all of their energy for months into preparing for their defense. Uh, when they applied for disability and they went in and they did it and the judges like, Wow, you did that. You're okay now, right? Exactly. Oh, you don't need disability. You give this wonderful, cogent presentation and it's like, Oh, my God. I spent all of my time for the last four months doing this and used every drop of ability that you had of, you know, in all the stresses, they go through it. Oh, this is it. And if I don't get it, it's not going to continue. And then they're like, Oh, you're okay right now. I'm not okay. No, I'm not okay. And ah, lot of people with disabilities are trained toe. Act like we're okay. Because if we don't, we get rejected. And you know, you have one good day and you go out and do things with friends, and you take pictures and you're happy and smiling. And, you know, you get this response on social media of why are you on disability, then? If someone lurking with a camera going look, you're fine. What are you doing? Smiling. Right. And it's no. We're allowed to have a life, were allowed to want things, were allowed to do things we just can't do full time work because our bodies are unreliable. Alison thinking of work and in your blood block post that you you do quite often. What is some satisfaction that you're getting out of this by sharing your story and engaging with other people? Well, my big thing is, I really want to help other people have an easier time than I had, and I'm also very aware that I've been very privileged. Um, my family has always been supportive, Um, my both financially and emotionally. Um, I grew up, you know, in a privilege setting and So I got these things and I had the time toe learn how they worked and understand the process. And so I'm trying to put everything out there so that other people who don't have that energy can hear. No, it is hard and it feels hard, and that's just the way it's designed. But it's not your fault and you could do it. And I, you know, I feel hopeful and sharing that. I hope that I'm helping others. And that's always been something that's very important to me. Learning about how things work and then expressing and sharing that with the people who need to understand that. Alison, what would you like? People thio know about you or the work that you're doing so they can have a better understanding of you may be a better appreciation of what you're trying to accomplish. Well, I I came into all of this because I struggled through all of the working stuff that I had to dio um, and I got on the system because I had to, and it helped me have the basically the emotional safety net on financial safety net that let me...

...do whatever I could do in the moment. Um, I've you job, if you being healthy, getting healthy, managing my symptoms. That's my full time job. And my goal is toe always to whenever I got the extra energy to use that to help other disabled people get themselves to a place of stability so they can focus on healing themselves. And it's on Lee, If you're feeling hole that you can really give, you can't pour from an empty cup. And so I view getting on these programs as trying to refill my cup. Or at least, you know, catch up the cracks that I can fill the cup. So then I can share with others. How do you How do you stay productive? How do you keep filling that cup? Well, I've got a I've got a bit of a self care routine, and I also have found, uh, treatment programs and different things that work well for me personally, um, it's a combination of regular exercise. Um, regular meditation, uh, learning how to, like, manage my feelings and my symptoms and making sure that I don't push myself too hard because what I find is I'm I'm a person of like action and push and I want to do everything on def. I try to do everything. I'm going to get nothing done. So it's about finding that balance for me of doing enough to feel satisfied and productive without being too exhausted the next day. What keeps you efficient? What keeps you What is there something a tool that you use that it kind of keeps you on track, especially? It seemed like opposed to asking someone who works full time about their work. The work that you're doing is on yourself, right? And then you're able Thio free yourself up to do some of the things you enjoy. So is there is your tool that you use to help you stay efficient? I have to create a schedule for myself. Um, most people have built in structures like your job, your hours. You know, you've got these things that are like, I have to be here a this time, and then you can build around that I don't have any of that. And that's one of I think, the struggles that disabled people have. We don't have asthma, much structure automatically, as people dio And so I created a structure of, you know, self care tasks and working and things like that for myself. But I have to build in flexibility because one of the problems is my body's unreliable. I have good days. I have bad days. And so I have this ideal day list that starts with getting up for a walk at 6 a.m. On just goes from there. Um and I usually don't get everything on that list done. But I'm okay with that. But I got that there. So if I wake up So when I wake up in the morning Oh, right. I wanted, you know, I want to meditate and I want to go for my walk. And I want to do these things. And here's my little order for doing them in. And part of what's built into that is okay. And now I'm gonna work for 50 minutes, and it usually I end up working longer than that, but I've got you know what I mean. I've got a structure toe work from. It's interesting. It it's not. It's not. I wouldn't say this, but it's I think you would come from and people with, as you use the word disabilities. I don't know what people think about that we're nowadays, and I don't think anything different. It is the appropriate, appropriate word. Absolutely like handy, capable and all that crap. Yeah, it's minimizing who we are. Mhm identity is disabled. That's not an insult. That's just what we are. So with with that with disabled, um, I don't know if this is the right way to look at it, but like a prisoner in jail, you would have Ah, very interesting perspective. Like a prisoner in jail would would hopefully clearly define what they would like to...

...do if they were out of prison or they know what they would like to do. And in this case, being disabled. You know what you would like to do if you could just work. So in the working, just in the area of working and being able thio go full time. So, do you have any work life? So people getting into work. So I mean, for you, You you were a page when you were younger and you worked in the library and you did all these other jobs. Do you have advice for people who are getting into work and and I maybe maybe you want to comment to on me saying it's like being locked in. And but you would have, Ah, interesting perspective because you like I listen, you know, it's like having grandchildren. Some please listen to me. I have some very good advice because I know if I could just do this, I would certainly do it this way. All right? So yeah, the prison argument hits me wrong. It's okay. So our our bodies air are unreliable, but part of the goal with being able to really understand and manage your disability is thio befriend It is to, um, integrate that into your identity. That's actually one of the harder parts, because at first it does feel very my disability is keeping me from doing this take. But first at first, absolutely. And that I can't imagine someone not feeling that way. But what kind of needs to happen is, in a way, think about the disabling condition like, ah, wild animal or a crying baby or, you know, some something that you can't you can't communicate with clearly. But there's ways toe kinda reach an accord. That's really what it's about. And So it's accepting what you have and accepting what needs to be done to manage it and then like listening to it so that you and the disability have a better life. So, like, for me, part of me is like, OK, yeah. I want to do everything I want to travel. I wanna I wanna do all of the things. But I know that if I try to do all the things my symptoms were going to go nuts, I'm gonna pull a muscle or five. I'm going to be upset, and I'm not gonna have done the things I wanted to do. Mhm. So I make peace with my disability and you're okay. Today, we're going to go up to New York City and see friends and wander around and do cool things. And then tomorrow we're going to rest. Mm hmm. Planet in your schedule. You structure that in knowing it's gonna happen. Yeah, absolutely. And so it's about, you know, and you know, sometimes it's all right. Today, I can't work on this. Alright. I'll work on that tomorrow and I'll do the simpler thing today. So it's and sometimes it's like, Okay, No, today is a rest day. I just can't do more. Alright. Today is a rest day and I have to be okay with that. Mhm. And so for other people who are like newly diagnosed trying to figure out their next step things like that who are managing stabling conditions. My advice is first, take care of you and figure out what your body needs, what your emotions need, what your mind needs to be your best self. And that's your job. That's your full time job right there. Understanding and managing your condition as you find the right balance. You then might have some extra energy that you can put into your passion that you can put into your purpose whatever that purpose is. And very often that purpose or part of that purpose is work in some form. Would you say your advice would be similar to what is the opposite of disability to able bodied persons? Is that is that all abled people? Persons? Nope, just Abel's because because there's a lot of mental...

...health condition and a lot of invisible conditions, so Able bodied is ignoring that. So it's just eating able people, not even people that disabled disabled people labeled. Would your advice be the same tear abled? Yeah, it's getting getting it. No. The idea of advice for people getting into work. Listen to yourself. Listen to your instincts. Mhm. Listen to your body. Um, think about what you can do. Think about what might be interesting. Try the things you want to try and listen for a little voice inside of you. A little sense of rightness. Um, the ideal thing with work is getting into the flow state where you're just so absorbed in what you're doing that you don't notice the time going by. That's the state I usually enter when I'm when I'm writing a post and things like that. But it does take time to get there. So go in, try out your job, try something you think sounds interesting. And as you're trying it, mhm. Listen to yourself. And are you happy? I read something on your post? I think it's your vision for our well spent and the idea and help me tell me if I'm off on This is what you're trying to do or what you are doing is allowing disabled not be the victims, not be an inspirational story, but to show them in, they're multifaceted Selves. So with that e think is what you're doing. Would you say that you have found there's actually less dissimilarities? There's There's Maurin, common with abled and disabled, that some of many if not all able people have some sort of issued in that if we're able to work through any sort of issues when it comes to work, I'm just I'm just referring Thio work that people are pretty similar. Um, if they're able toe, get through some of the issues that they deal with on a regular basis. Oh, yeah, I mean, basically, because you wanna you're tryingto push away the stigmas and by pushing away a stigma and given someone the ability even in their disability, then that's kind of putting everyone on an even keel. Are trying to Is that is that not accurate? It's well, yeah, it's that for so many people with disabilities, we're told we're burdens and we're told, were a dragon society, and the only time you see disabled people is the stories around their disabled, and then they magically get better or the story is wow, what an inspiration they are because you know they walked. That's like No, no, no, no, no waken do cool things. Let us do cool things. Let us feel good about enough of it because you know anybody if they feel bad, if they feel like a failure, it's really hard to do other things well. And so I'm trying to get us all, um, on a relatively even playing field. And a lot of people with disabilities will need accommodations to do those things. But the accommodation should be part of the playing field. Um, it shouldn't be such a fight to get them on. That's really part of able ism. And I say that because I think I could ask. I could go through this interview without mentioning, in my view, just in my inexperience and ignorance to is I could go through this interview with you and we can have a non disabled conversation and just talk about work, and you would be perfectly fine. But...

...you would also bring in, you know, some of those accommodations and to say Yeah, you know, I love the work. I do this and I do that, and sometimes I need to take a break from things just because I have, um, this thing and I think we could and that's what I like about. What you're doing is you're trying. You are leveling the playing field and just allowing the conversation to say, Well, we just, you know, And like other people, able bodied people, they might need some sort of accommodation, whatever it may be, just some guy in the next booth not so noisy or something, because that irritates them. Or, you know, they need a long, extra long vacation or whatever their accommodation might be. And I think you're doing a great job by bringing that up because I grew up, as I said in Canada and whether it's disabilities. Um oh, our other sorts of needs. It just was really common where I grew up. Teoh be a little bit more understanding, and I'm not saying I have any great amount of humility, but I just It's hard. I understand the stigma, like I understand what perpetuated or seen or you here, Um, but it z dis heartening to know that it it continues because I've met. And that's the reason when I read your your bio, I was like I want you on my podcast because you know about work. Not because you have a disability. That that's the whole reason why I wanted you on there on here. Because I think what you're doing is you're saying, Hey, I could work too. And I'm like, Yeah, good. I like workers. Yeah, and it's like I guess my thing is also that too often just because you have a disability, people don't want to hire you for People don't want to give you that chance. And it's, you know, it's another thing holding people back and and so I want to try to break through, uh, that hesitation a swell and say no, wait, people. Disabilities could be very hard. Workers can be super conscientious. I actually, um there's this idea about, um, work as, um shoot. I'm losing it now. There. I'll have to pull it out it, But there's, um use the word a bunch of times. I'm sorry. My brain just Well, as you think about that is Alison is anything No, no. No worries. Is there anything that you learned along the way in terms of work that you didn't know? When you're younger? or a mistake that you made, uh, a while back. And it's just a lesson that you can share with other people. Something that you didn't know or just a mistake you made and you learn from. I'm sure there's lots of them, Um, but like for me, the big thing has been if I worry about something, I'm going to get worse. My symptoms are so what I've had to like train myself to do is seat that anxiety low and to just consistently tell myself I'm doing the best I can. I'm doing what I can handle. And if that's not good enough for somebody, that's kind of on them. A Zilong as I clearly communicate my my needs, my limitations, um, and how to do things. So, like, for me, I think one of most important lessons has been this combination of like trust myself and be proud of what I do and don't put too much time or energy into comparing myself, said that like ideal perfect person, because I'm always gonna fall short of that. What what I'm doing is good enough and good enough is much better than not done. So it's keep moving forward stick with all positive mindset. But don't get, um, too caught up in how the other people on the outside might see it. Speaking of trust, I like that that you're not, you know, worrying. And that's we all need that advice of not worrying about what other people think...

...do or saying. But where do you you know, how do you define character in the workplace? Or, you know, what kind of character traits are you trying to develop? Because you see that character is important versus just going for a career, just getting a job, and I can see that with you, You're, I mean, all the jobs you took with, like, really define and biology and like, really like I mean, you're well read you, right? Well, right. I see that by your blog's as well is where do you place character and integrity, and how do you define that and how? What do you like to see whether in yourself or in co workers? Well, character is about reliable engagement and reliability. In this, I think it is really important to have to stick with you're morals to rely on yourself, and it's so important choose. Share yourself appropriately with the workforce. Sense of purpose is, I think, key to being able to do a job. Well, purpose is the word I was looking for earlier. Uh, there's been research done on purpose Onda sense of purpose. Like looking at that is the next step in the workplace. Andi, What they found was people with disabilities who are working had 250% mawr stronger sense of purpose than the average person, which is kind of amazing. Do they kind of define maybe why, um, I have that particular study didn't. But my personal belief is because it is so hard for people with disabilities to gain employment and because we do have programs in place to support us if we can't get employment, the people who have made it toe working close to full time are people who are extremely dedicated to their sense of purpose to their job. They've got a very deep connection. Most of them have probably minimal social lives and minimal other opportunities because they're working full time and that takes most of their energy. So you have to have a really deep drive to be able to make it against all of those odds. Hence their sense of purpose. Yeah, is so much higher. Yeah, that's my lay person's understanding. But I just remember that they did their study and I don't know how big their sample size was of disabled people who are working, but it was a very impressive, um, number and a very impressive percentage. Yeah, one of the, um uh there's, ah very good book about purpose in the workplace. And that's, um What what drove me? That the guy, the guy who co created it is now running a group called Imperative. And they're just all about studying purpose in the workplace on by think, um, like purpose and self efficacy or kind of opposite almost opposites to each other. Hmm. That self efficacy is that belief that you can do things if you don't have self efficacy. You can't easily have purpose, because if you don't believe you can do something, how can you do some e read something you read about what you're doing With thrive, thriving, wild disabled is showing people or allowing people to understand that it's necessary Important toe have joy in every day. How how do you. How do you do that yourself? Or how do you show that to other people to find joy in the everyday everyday things of life? Well, I mean, one thing that I do is I go for walks most days and I'm right next to this beautiful nature trail. And so I'll go out for that walk and make sure that while I'm out there, I'm looking for the birds and appreciating what I see that I'm, you know, enjoying the first chair on me. And I'm just focusing. It's kind of a form of mindfulness, just letting yourself absorb what's going on around you and finding the joy in it. Um,...

...for me, at this point, part of my purpose is sharing what I've learned with others and learning from others. Bond. So I also do a lot of talking with various friends and people have connected with were also disabled, getting their perspectives and hearing from them and hearing how they have, you know, found their ways to be happy, found their ways to to thrive. And I think thriving and finding joy is just deeply essential. And for me, I take joy in my partner. I take joy in my cats. I just make sure that I appreciate what I had a pre cove it. I was pretty active. I was going up to New York City somewhat regularly there. A couple of groups I was involved in there haven't been able to, because Cove it, um my I don't fit into the like, immuno compromised territory, but I know that I get exposed to a minor bug and I'm out for a month, so I'm being very cautious because of covert concerns. E I haven't been up to the city since march. Um, Alison knowing knowing your your educational background. Um, but thinking of my listeners, where do you where do you place education and in the value of education in work? And it doesn't have to be formal. Or do you think it has to be formal? But a lot of I mean, you're down there in the Gulf of Mexico, you know, there's some hands on stuff, and there's some good education you can get, Um, whether formally or informally, where do you place education? I think education learning is really very deeply important. But it doesn't have to be formal, uh, to me. The important thing is kind of keeping your eyes and ears open and being open to new experiences and learning from things around you. And if you're in a space where you're not getting new experiences, making a conscious effort to create that space for yourself, Um, so, like, for me, um, my bachelors is in interdisciplinary biology and chemistry, and I minored in philosophy. And then a few years ago, I went to grad school and got my master's in organizational change management. Um, specifically because at the time I started my own consulting business, you picked a stressful road. You just right through it, OK? Oh, yeah. No, I I don't pick the easy road pottery E mean anything, Potter. He could be stressful, I'm sure. How do? Yeah, that's not easy either. Andi, kind of my thing is, I am. You know, I like the intellectual pursuits. Um uh, for me, formal education was the was mostly the right road. Um, honestly, grad school really, really triggered a lot of symptoms, and I had to take a year off in the middle. Uh, because I couldn't safely use stairs, my legs would collapse out from under me unexpectedly. Um, and I had a bunch of other, like, really extreme symptoms kick in. So I couldn't, uh, ride the train safely. I couldn't. You know, I had toe participate remotely for a for multiple semesters or most of them. Um, but I'm stubborn, so I went through. Sometimes that's what it takes. Oh, yeah, Yeah, definitely. If you want something, do it. If there's something you truly deeply want, you will figure out a way to get there. Well, Alison, this is this is what I'm one of my last couple of questions I have for you is what encouragement do you have, and you're kind of throwing it out there now. But the encouragement that you have for people who might be able disabled, they're they're in the midst of cove in there. Just, you know, they might have lost a job. They might have lost a father or mother. But the idea of working and the work is good and work can be tough. Do you have any words of encouragement?...

It is always good to have a sense of purpose. Toe have a goal to aim for on very, very often work is that purpose is that goal, and there's nothing wrong with that. Um, I do think sometimes you might need to temporarily focus your purpose inward and focus on self care, and that's okay, too. And that could be a very healthy thing. So if you're having trouble finding purpose in your work in the moment, think about what else gives you that sense of purpose and use that. Get yourself forward until you're in that position, um, to find your purpose and work again because I think that's really important. That's one of my big lessons that sometimes my job is to take care of myself and get myself healthy. And what I do is whenever I can work because my symptoms air too bad or because things were not, you know, things are out of my control. I shift the focus to managing myself, and then when I have that energy again, I put it back into my work, and that's how I'm able to work as consistently as I am. So I think that's a a focus on your purpose and very often that will get you to the right work. But if you need to take a little time toe internally focused. That's healthy too. Alison, how can people reach you? How can people find you? Alright, My blogged is W w w dot thriving, well disabled dot com. Um th r i v i n g um And I also am, um I'm on. I have a Facebook page and a Facebook group. You just search for thriving well disabled little pop. And I've got a twitter account, uh, thriving W disabled. Um, I also have ah Pinterest account as well. So basically, search for thriving while disabled. You will find me. It's a good name. Yeah, I'm I'm proud of it because a lot of people with disabilities are just feel like all they could do is struggle. Um, and my thing about it is, even if you're struggling in the moment, if you're trying to improve your life, you're aiming towards thriving, mhm and like that's the goal. The goal is to thrive. The goal isn't to survive. The goal is to thrive. But first you have to be able to survive and have that base to be able to go up to thriving. Alison, I have one final question for you. Mhm. And that is, Why do you work? I work because that's where I find happiness and purpose. Um, when I'm not doing well, I like I said, My job is take care of me. But I always will hit a point when I'm not. If I don't have a projects that I'm working on, I'll hit a point of like I will be depressed if I don't have a project. And so for me, it's all about creating projects for myself. And very often those projects aren't work in some form or other. So that's that's what Allison Hayes thriving while disabled. I appreciate your time and the work that you're doing as you continue to thrive. Thank you. Thank you for listening to this episode of why we work with Brian V. Be sure to subscribe, follow and share with others so they to be encouraged in their work. I hope that you have yourself a productive be a joyful day in your work.

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