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 hostBrian V. As he speaks to people like you from all over the world as wetogether dive deeper into our motivations, struggles, joys, seeminglymissteps, hopes, warnings and advice, which would be an encouragement to usall to get up. Get going on, keep on working. Working is tough, but working is good. Now here's yourhost to why we work. Brian V. Um, Brian B. And this is why we work today. I hadthe great pleasure of speaking with Allison Hayes. Alison is engaging andconnecting with people with disabilities. She herself has afunctional neurological disorder, but it's not stopping her. She's stillworking. She's still striving. She's still pushing forth. And I want to findout why. I want to find out why she's able to keep on going. Thio Keep herchin up and find the joy in the every day. Join me in my conversation withAllison Hayes. I'm Brian V, and this is why we worktoday. Have the great pleasure of speaking with Allison Hayes. Goodmorning, young lady. Good morning. Thank you for coming on. I just did anintroduction to you would you like to give us? Just, like fill in the blankswhere I probably miss? Because I don't You don't do them that well. Um uh, andjust say a little bit about yourself and what you're doing nowadays, andthen I'll take us back. Correct? Well, I'm Alison. He is I have a conditioncalled functional neurological disorder. Um, which is a relatively common butrarely properly diagnosed neurological conditions. It expresses a lot ofdifferent ways, but my case muscle movements. Um, I am currently running awebsite called Thriving. Well disabled. It is a, um it's a blogged, but I also offercoaching services for people with disabilities toe help them to managetheir 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 waythrough wherever it is. Um, you can guide them best. Exactly. And so mything about it is becoming disabled. And also actuallyusing the U. S. Social locker system is a really emotionally negativeexperience that trains towards enforced dependence on. And I'm trying to helppeople break out of that and regain their passion, regain their sense ofpurpose and be able to with a better life. Because I think one of the bigproblems with the systems is that they destroy the words self efficacy, whichis the belief that you can do things. And that's what manage the most. That'sI mean, that's great Thio to be able to have first hand experience. And I thinka lot of people, one way or another, get some experience like that, whetherit's directly or through someone else, and they realize the dependency thatpeople begin toe have on it, and then that kind of enables them to go down apath that is inescapable becomes a bigger it becomes a biggerhindrance to them than maybe the issues that they're having it can. I thinkpart of the problem is, um, mental health. Mental health isn'ttreated very well. Uh huh. And so, uh, there's so much stigma around mentalhealth 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 emotionalhealth support they need to be able to take that next step to recover, to moveforward with their lives because they're so traumatized by these variousexperiences. Allison, I'd like to get into this a little bit more. A littlebit later. But what about you? What about getting thinking of the name ofmy podcast of why we work? What would...

...have been your very first job? Maybe itwas a teenager. Um, maybe, uh, okay. Fall making a dollar somewhere. Ormaybe 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 abook. But also the pages job is to go through in library and put all thebooks away. Like you know how when you go into a library and you check out abook 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 atitle. 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 theyusually higher, you know, high school kids for we run around and put thebooks 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 getthat job? Oh, I figured it was time to startworking. I mean, I just, um I I kind of you know, I was doing wellin school and moving forward, and I was like, All right, well, I'd like to havesome money. I'd like to take care of myself a little bit. Wow. Okay, this is this Sounds like anawesome 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 somepeople and I always love this where people say I wanted to go get a job. Isaw This is a necessary component of my life. Even, you know, great 11 ofschool, which I think is is admirable to get a job, but also see thereasoning for it. Why did you pick it within the library was that you were afluent 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 hetold me about it, and he was a little, like, not in love with the job. He'slike, Yeah, yeah, I put the books away and I'm like, Oh, my God, that's theperfect job. I think it would be an interesting job, actually. I mean, youcould learn a lot, you know, you could learn some things. And if you want todive further into it, then you mean there would be a lot of things Iwouldn't know by these books that I'm picking up. Like, really, there's abook on this. Oh, yeah, and And it was funny because I was they would get frustrated with mebecause I was very. I was relatively slow at returning the book and, youknow, coming back because, like, the time things by, they sent you out witha cart. And how long did it take you to come back? And I was really slow andthey 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 solong. 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 precisewith putting those books put, putting government documents away because thesystem doesn't make a whole lot of sense. There's actually three differentsystems. There's the federal, their state. There's county, and thegovernment documents are all of the things that the government publishesthat are available for people Thio look athidden in the back of the library on, and it's not accessible to the publicdirectly, because again, the organization system is superpersnickety. But, um,...

...yeah, it ended up being my job to putthose 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 weredoing this in high school, did you start toe have, ah, clear idea of whatyou wanted to do after high school? Well, um, I knew I was going away tocollege. I'm privileged enough that there was no question I was going tocollege, and I knew I wanted to go into biology. For what reason? Um, I was one of those kids who wentout in the backyard, and I was really little and flipped over the stones toeLook at the bugs bond, figure out what they were and how they interacted witheach other. I It was very much a nature girl, and, um, it just kind of madesense 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. Seeingthat 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 NewJersey and I moved Thio Appleton, Wisconsin, for college. LawrenceUniversity. 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 experiencewith 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 reallyspoke to me. Andi the it was It's a small, cute little campus, and I wantedto be at a smaller institution. And when I visited, I just kind of fellin love. Did you work while you're in college? Yes, I did. I I briefly workedin the eye for for computer services. And then I found my way back to thelibrary and, um, I went in and I said, I have experienced with a za page andgovernment documents and they're like, Oh, here's our government documentsperson 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 myuniversity days are in our library There was four or five, maybe sixfloors because the higher you went to study this murder, the person waas Butthe people who were on the first floor usually we're not there to study. Itwas more of a social social gathering. From a page perspective. You know yourperspective. How did you find the student? Maybe this the college youwent to, they were all studious. I'm not sure, but be working like thebird's eye view of being, I would say library in, but a page. Um, just youwould be smart to me, so that would that just covers everything to seeingthese 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 studentsinteract and especially being away for the first time and maybe even justfinding a library like I did for the first time in university, kind of beingforced to learn to study. How did you find them in the way that they approachtheir studies. Well, it's interesting, because, like, I didn't interact withmany fellow students at the library. I mean, um, we had enough computer access andthings like that that you didn't have to study at the library, so it wasrelatively empty. And then the other part was government documents arealways, like in the back corner out of the popular section, So yeah, so I wasSo you know, basically it was me and...

...the books. Yeah, and I was just sittingthere quietly, stacking, organizing and putting away. Unfortunately, it was avery quiet type job, though I like did your Youknow, your college have the same sort of split with the main floor was moresocializing. And then 2nd and 3rd kind of plateau towed into more studiostudents? Or was it just quiet? Generally? Well, it was quiet, but theydesign it that they also design it that way. There's there's little carols forpeople 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. Findthe, you know, fun what they need, that kind of stuff. So it's, you know, it'sone of those things where the first floor is the space to be social. Ifyou're going to be social in library and then the upper floors are where ifyou're studying, you're studying and you've got I mean the you know there'swall, there's little. The carols were like little walls. They were like nooksfor people to hide in with their books. And, like I did notice, there'd beplaces 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 nappingnapping up in those 2nd and 3rd floors. It was so quiet. If you're getting anap, go back to your dorm room. No, you're right. Sometimes that doesn'twork either, depending on your roommate. So as you were progressing throughcollege and working as well, when did you start to? Or maybe it was prior tothat figure out what you wanted to dio or what were some things that youthought 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 relatedcourses. I was really heading that way. Um, but the lab work for genetics. It's reallyboring. 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 justreally turned me off. And at the same time, um, I did a couple of ecologycourses and loved them on going way back as a kid. I was very much a naturegirl. I was out in the marsh. I was, you know, looking at birds, those thosekinds of things. And so what I ended up doing waas focusing on, um actually, the biggest one was Ivolunteered. Um, my freshman year of college. I volunteered with theNational Marine Fisheries Service. Um, they had a big Well, um, they have, ah, lab near mefield 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 hadthis 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 youwent 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 remissionfor a few years. I, um I like I said I decided I reallywanted to go into fishery biology. Andi. Uh, so my senior year, I went to theMarine Biological Laboratory and studied there for a semester and then went on, um, it's been a spenta term in London. And then when I came home from From that, um, I finish off my degree and thencame 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. Iworked there. Um, I loved the work, but I felt like some of the ways that theywere managing things was dangerous. Hmm. Um and so I ended upleaving that lab, and I did a lot of I did education work. Um, I did that mostof the summers after college. And, um, I got I got myself set up teaching kidsabout marine ecology. Mhm on, you know, just hung out on Sandy Hook, where theNational Fisheries Service lab waas and, um, just kept finding little jobs. Thatthat worked in the Marine ecology field was great. So at that point of findinglittle jobs, were you still looking for a career? Were you finding that yoursymptoms were ebbing and flowing or rising and falling to the point whereyou weren't sure if you could commit to a job? How, what was going on or youjust couldn't find something. Oh, it waas I was getting. I decided that sixmonths after graduation, I was going to go explore Australia. And so I wastaking whatever work I could to bring in little bits of income so Icould go to Australia, and I did. I ended up actually workingbriefly in Australia for, um, the Western Australia Marine. Um, Marine Management Laboratory was called,um, Andi. I worked there for a couple ofmonths while I was in Australia. Andi, I was cutting up bluefish. Odalis, ofall things, um, Odalis are the inner ear bone of a fish. Okay, you know, small slice. I don'tknow. That's it. Oh, their time. They're tiny. The total is itself issomething 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 storyof the fishes. Mhm. It's something that's always growing. And so the Andso What they would do is you take the Odalis in case it in resin and then cutthe resin Mhm that you end up with this little tiny sliver that you could then look atunder the microscope and you could count the rings and see the lifehistory of that fish. And this you went to Australia to dothis Or you found that when you were there, something in between Basically mycontacts 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, contactthis woman and maybe she can give you a job. That's exciting. That would be anexciting 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 amonth. Come on over. I think those those types of trips airgood for people's e mean you mentioned you went to London is Well, um, butespecially university students or any anyone but taking year off, figuringthings out, you know, maybe even diving deeper into the thing you want to dolike you did. Did you have a plan for after Australia or you even consideringstaying there? What was your longer term plan? My longer term plan. Iactually was thinking about applying to grad school for, um, yeah, for Marine,for officially biology. And I wasn't positive. I got one or twoapplications out before I went. I talked thio potential lead somebody whomight 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 hehired me, I was I was in as a student. Um, but what ended up happening waswhen I was on my way home and I got the interview, I started shaking, and my symptoms cameback 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 doto move forward in my chosen field, but I want to take a little more time, geta little more interesting experience, you know, that kind of thing. So yoursymptoms sorry for your symptoms at this point, where they as severe, isthey've ever been with a dream or they were just minimized and Okay, I didn't have a diagnosis. Ididn't have a diagnosis at the time. Basically, what was happening was Iwould have these short period of like, full body. My whole body would justshake. And what I'd been told while I was incollege was, Oh, it's anxiety. Here, take this medicine and maybe you'llfeel better on it was dismissed. It was downplayed. And, uh huh. And for me, Ihad what they I Basically it's called La Belle Indifference. It's this veryblase attitude about the symptoms, and for me, I was just like, well, whateverit shake, I'm shaking. It's annoying, but I didn't like panic about it. I didn't get reallyupset 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 annoyingin the moment, were they? This is for listeners of people who may beexperiencing something where they triggered by something, or would theycome 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 andmeeting 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 goingplaces. This is great. And then I was interviewing for a position for amaster. You know, take my masters and my body is like, No, you don't want todo this. And so I had this whole s So I had these shaking episodes around theinterview. And so I'm like, OK, my body is telling me maybe not yet for themasters degree. Cool. I'll go do other things and come back to this. Hmm. Sowhat did you do while you wait It I I found this job. That is my favoritejob ever. Um, I was working as a fishery observer on the Gulf of Mexico. Yep. I know that's a nice vacation spotfor a lot of people. Think. Yeah, it wasn't exactly a vacation. What I wasdoing 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 wasto do species, uh, surveys and look and collect samples from their catches andsee how and use that data toe Help the larger team see how effective the bycatch reduction device. Waas, Um, as the environmental thing, the shrimping is kind of one of the mostwasteful, um, industries as faras sea life it They dragged their net acrossthe bottom of the ocean floor and pick up everything and most of what theypick up dies. Um, because they dump it on the deck ofthe ship and then sort through it during the shrimp pond. Then eventuallythey shove it all overboard. But by the time it's overboard, anything that youknow needed water to breathe is dead. So it was a good job, but it wasenlightening as well. Thio. Yeah, And so I loved it because I was out on thewater.

I was just surrounded by, um, alldifferent kinds of really cool creatures I've never seen before On myjob was to figure out what they were and help them and, you know, certainspecies that were important for game it would be weigh them and measure themand get extra information. But it was all, you know, sit out there and gothrough fish and get to know you know, get to know them. And it was awesome. Iloved it. Did you ever have to sleep out there or did you just 00 yeah. Waywere 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 yoursea legs as they call them for you. Okay. Oh, no, I I puked. Um, but itwould take me a a day or so. Thio kind of re stabilize myself. Um, it wasmainly we were in a river, and then we go up the river into the depths of theocean. 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 Iwouldn't lose them overboard on, uh, one of the guys in the crew, like, cameover and like, gave me a paper towel. And I'm like, Thank you. Um So how long did this go for? Untileither Yeah. Symptoms increased or you decided to get your masters. Well, whatactually happened was the job lost funding. Okay, it was the end of mysecond trip. And like, I basically went out betweenThanksgiving and Christmas. And when I came back to sure, I had just investedin my first apartment with a good friend of mine, and I was assuming thisjob was going to go on for a while and I was like, Okay, I'll take a year ortwo or whatever and do this job, and this will be great. And, um, when wedrove back Thio Galveston, which was our base for the job, basically, they're like, Yeah, we welost 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'regoing to try No. Okay. And I was left with this really, really deepuncertainty. Did that also increase? Um, stress inyour 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 ajob? Is it going to continue? I love this job. I'm willing to hang out andwait a bit for this job, But is it going to continue on? Um, yeah, well, im and so basically, Icame back. I moved into the apartment with my friend, and I had no idea how Iwas gonna keep paying for it. Um, but, you know, I hoped and figured that I'dhave work again. I just didn't know what the way it was going to be. And Iwasn't I didn't think about applying forunemployment. 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 ismost of the work in my chosen field is in the summer season, like, yeah, veryseasonal. Most fields tech lab tech type positionsstart spring in the summer and end at some point in the fall. And so I wasgoing 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 withmyself and that uncertainty, um, ended up triggering, um, newsymptoms I started having urinary problems and just constantly needing togo to the bathroom, and I didn't know why. And I started going to differentdoctors to try to figure it out, and...

...nobody had a clue what was wrong. Um, and so I basically ended up spendingthe next several months. It's like, really uncomfortable and trying tofigure out what was happening. So it was like this. Um, I started noticingthe increase in, like, January into February, and so by MarchI was seeing doctors and just trying to figure it out and go home. But imaginethat 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 justramping up for you. I could only imagine that it was It was really hardto to manage at that point. Exactly. And so it was just this I would just Ididn'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 upcalling me with a job. But at that point, I oh, I was being catheterarised 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'mgetting the catheter out on Friday. I can't be on a plane to, you know. Andso I ended up saying I can't and they never called meagain. Uh, and, um, I was like, Okay, now it's starting tohead into spring, and I'm like, I'm going to find a new job. That's whatI'm going to dio I'm going to ignore the bladder stuff. I'm just gonna finda new job because I don't know what else to Dio, and I did. Um, I startedworking in South Jersey, um, with a group that was studying red knots. Andso I was red knots or species of bird that's endangered. Um, it's pretty cool. They migratebetween Tierra del Fuego and and Alaska. Not last guy. Sorry. Uh,the North Pole. They messed up there, and they and they winter. It'sinteresting you're staying through this time pretty consistent with your jobsearch, 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 eyeout. I interviewed for a job at the National Marine Fisheries Service, butthey 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 severalweeks. I loved it. And then I found out that I had enoughtthat that the National League Fishery Service was willing to hire me, and itwas a better paying position that was much closer to home. And I was veryinterested in doing that. Um, and I had a couple of other, like, positive stresses. I had a friend, myfirst friend, who was expecting a child, gave birth to her baby andan otherfriend. We set up a birthday party for him, but at the towards the end of thatbirthday party, like, everything happened that one weekend, you know? So,yeah, could you explain positive stresses? Sure, Sure, Sure. Okay. Sousually 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 feelingsick, those kinds of things. But there's also what they call it the usestress, positive stress bond. That's excitement. That's, um, you know, whenyou've got a job and you're in the flow, that's a form of you. Stress, positivestress. 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 allpositive 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 responsiveto positive stress as well as negative stress. So your friends having a baby and yoursymptoms 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, butshaking every inch of me. It was just shaking, shaking, shaking, and Icouldn't stop shaking, and more so than it's your body hasever shaped prior to that, usually in the past, it would be, You know, I Jake,for like, 30 seconds on, then it would stop, orI'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 tremeoring, and it was kind of this. I can't ignorethis one. I don't know what it is, but this isweird, and I don't know what to do now. And what ended up happening was myboyfriend at the time, took me up to my parents house. And then then I calledneurologist that I'd seen when I didn't have any symptoms. I'm and said This isgoing 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'tfigure 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 veryfirst serious testing to find out at this point? I mean, you went to aneurologist prior to that. But was this Please tell me what is my problem? Sortof situation. Yeah, it shifted from Okay, this is weird to something's really wrong. Let's figurethis out. So between that time and when you finally were diagnosed, how howlong 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 andyeah, it's zero, but two months. Yeah, so? So basically what it was was thetesting all came back normal. And the colleague of my neurologist who is onhospital duty that week, she came to me, and she's like, Look, this looks like a movement disorder. SoI want you to go Thio the Center for Parkinson's and other movementdisorders and see one of the neurologists there. I think that theymight be able to figure this out, but we're focused on seizures and such. Andit's not that it's something else. So I took a few weeks to get in, butwhen I got in, that neurologist was able thio diagnose me. This was the third or fourth neurologist I've seensince my symptoms started, and he was the first person who was able toactually identify what was going on. So since being diagnosed uh huh. Haveyou been able to keep a consistent, um, full time position job? No. Um, I havenot held a full time position sense right after I was diagnosed. And theylet me go after a month or two. And how long ago was this not to aid you, but Ithink it's near 2015 years, 15 years. So for 15 years, you're you have notbeen 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 workor try toe work, I'll reach us a point where either the job stress or my lifestress triggers some really severe symptoms. And then I...

...can't keep doing the work for at leasta why. So even though you have not been able to work with, they haven't been able to workfull time. A lot of part time. Is there something most recently that you'vebeen doing for a longer period of time? Or is it just every once in a whileperiodic? Well, I've been okay. I've been runningmy blogged for two years, but I worked in a different field geographicinformation systems for you. Pick some pretty tough jobs in the first place. Ithink 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, theshrimp boat. That can't be easy. Oh, yeah. No, I couldn't ever go back tosomething like that. Unfortunately, like I said, it was one of my favoritejobs. But it's not something I could do with the way my symptoms work, because the reason I had to leave fisherybiology was because the work was either a field work where we're out trompingthrough 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, myhands would shake which is annoying but really that if you'relike holding a live animal on E love, you shaking right? And soyou 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 hoodand 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 yourouter glove, and within 20 minutes it's through your inner glove. If you waitthat long and I'm cleaning glassware and thestress of the cleaning, the glassware, knowing that I'm working with dangerouschemicals was enough that I'd have a build up of stress and I could feelthat I was going to start shaking soon and so I'd save Thio, my lab buddywho's under the hood with me. Okay, I need a twist break and I rip off mygloves back away from the table and shake.Nobody's playing over. You know, I'm not surprised that I didn't that they that theyweren't comfortable keeping me. I was a risk. Understandable, Yes. So I shifted into geographicinformation systems because that was computer work. So if I needed to take atwitch break, I wasn't going to hurt anybody. You know, that was my logic. So it'sit's good that you're able to have. I mean, I don't know how pleased you arewith having a part time or periodic positions, but what you're doing now isworkers Well, especially with your blawg and your active and going onpodcasts 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 workthat 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 livingwith a disability, one problem at a time. And so I talk about the thesocial welfare system because that's I've been on the entitlements program.SSD. I sense shortly basically since, um, my Social Security disability insurancesomething yes, So that's the program that is designed for people who have awork history. Um, and we're working until theirdisability stop them from working and it basically gives me my retirementbenefits now. And so I applied for that. Sorry. Imean, I hope you don't mind me asking, but is there a time when that when thatwill run out? No, that's well,...

...technically, it runs out when I turned65 then I go on to Social Security. Okay. Okay. So I've had that as my baseincome 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 whatyou'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 theirsand in their time of need. So, yeah, So the idea is with all of the socialwelfare stuff, these programs exist. There's a lot of emotional shame aroundapplying for it because others such a high value placed on work and a lot ofpeople with disabilities want to work. Wish they could work, but their bodyisn't letting them, for whatever reason. And so, um, I share the informationabout what the programs are and how they function and how toe be eligibleand how to apply for them. E I saw. I think I misspoke at the very beginningwhen I said and you corrected me. But I wasn't understanding it as well ofsaying, 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 needthem to get them because of that shame of, you know, Okay, I'm going to getthis program. I really wanna work, but I can't work. So I do need this programand 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 ablebodied and get in these programs and then become more lax. Today's ical orlazy 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 towork but cannot physically or mentally, then another group of people who canlikely work. But don't And honestly, I think that second group ispredominantly 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 peoplewith invisible disabilities, and we get shamed for using theprograms when we need them. Yeah, so I just want toe. Yeah, I understand thatI come from Canada, so I know people who use the system because it is theirright 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 knowssomeone's true hard or mind in these situations. And and, you know, you hopeeveryone the best anyway, right. And in some ways it it doesn't really matteras long as they're being taken care of. But there are people that abuse thesystem and and, you know, and sometimes like in Canada, for instance, withtaxes 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 youused before? Blase was a fair. Oh, okay. Well, well, I know I have, is Labelle. Andwhat I've had is LA Belle indifference, which is not worrying about things evenwhen 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 thinkthat's a great positive message. A swell and self advocacy is the thingthat's most damaged by becoming disabled. That's also the thing that'smost damaged by the shame involved because of the shame because and thenegative 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. Soyou have to prove how little you have.

You have to prove that you don't haveany money in your bank account. You have very little. You have to provethat you haven't been able to find a job. You have to prove and the feelingis your proving that you're a worthless individual. That's that's a prettyhorrible I don't know, rabbit hole or wormhole toe have to squiggle your waydown 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 takingcare of yourself. That's what it is. That would be ahorrible experience. It ISS And so applying for disability is a necessaryevil, 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 inapplying for disability? Oh, it za pretty painful experience. I was in areally I was on the border of a really deep depressive funk anyway, because myfather had just died, which was part of why I applied. Um, my symptoms werereally severe, and then my father died and I was an emotional wreck, and I wasconstantly symptomatic, and so I wasn't even capable of thinking about applyingfor work. I just I couldn't and I'd lost, you know, three jobs in a rowbecause of my symptoms, and I just I couldn't e couldn't try. Yeah, And so what I did was Iapplied for, um, disability. And that is not good for your self esteem. Thatjust was mawr. This wasn't a positive stress either. Oh, God, no, it's veryIt's very painful. It's very negative. It's basically tell us every doctoryou've ever seen and what they thought was wrong with you. Explain in detail why you lost all ofyour jobs ever. And, um, then fill out all of this paperwork explaining whatyou can and can't do, such as. Can you use the potty such as, you know, canyou feed yourself? Mm. And you have to answer honestly. But there's thispressure of If you don't sound pathetic enough, they won't let you have theprogram you need. Yeah, and it's not forms. There's probably awhole bunch of things like Oh, yeah, it just seems counterintuitive, the wholeprocess. And if you're not, if you don't sound pathetic enough, they askyou more questions and question you further and make yousee doctors that don't that think you're faking. Um, youknow what I mean? Like, it's a It's a really, really unpleasant painfulprocess. And so even me, who's got the strong work ethic that didn't back downthat always was trying to push myself? I was really stuck for a year or sofrom you know, the combination of my life events and then reinforcing allthe 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 foodstamps benefit. I've had times where I use the There's also it's called LIHEAP, thelow income Heat and Energy Assistance program. I've had points where I neededthose programs and points where I was too high income to be eligible forthose programs. And, you know, applying is painful. It sounds like agrinding system where you're the one that's kind of getting eaten awaythrough the grind. Oh, absolutely. And here's the thing because of the socialmindset of maybe you're lying. Um, are you reallythat that off the the moral judgment of your poor, So you failed all of thattogether is what's going on in the minds of the people. Answering yourphone calls is what's going on um with the people who wrote your applicationforms with the people that you're talking thio And so it ends.

Most of them are burned out, and sothey're in this negative space and they could just tell you what you did wrongand what you need to fix to be able to get your application in. Like I'venever had an application. Just Oh, you did it.Everything's perfect. It's always Oh, you didn't do this. This is wrong. Ineed this other piece of information. Here you go. It's not right. Bring itback when you've got it done right and that's the attitude you get. It's Idon't know if I can think of it well enough, but to say if someone who's ina tough situation and it's not a new intellectual thing but for you to, forsomeone, toe have toe fill out all these forms perfectly would almostprove opposite of what they want you to provethat you're unable to do all of these things. It's like saying to ah, blindperson, follow this course you're like, but I can't No, but you have to do itperfectly 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, youdon't deserve it. Get it all done, and they punch you andsay No. Sorry. Yeah. I mean, I've actually heard I you know, I've heard Idon't know if it's an urban legend or, you know, somebody shared it that theydid it kind of thing. But this person dealing with mental health stuff whoput all of their energy for months into preparing for their defense. Uh, whenthey applied for disability and they went in and they did it and the judgeslike, Wow, you did that. You're okay now, right? Exactly. Oh, you don't needdisability. 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 usedevery drop of ability that you had of, you know, in all the stresses, they gothrough it. Oh, this is it. And if I don't get it, it's not going tocontinue. 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. Actlike we're okay. Because if we don't, we get rejected. And you know, you have one good day andyou go out and do things with friends, and you take pictures and you're happyand smiling. And, you know, you get this response on social media of why are you on disability, then? Ifsomeone 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 towant things, were allowed to do things we just can't do full time work becauseour bodies are unreliable. Alison thinking of work and in your bloodblock post that you you do quite often. What is some satisfaction that you'regetting out of this by sharing your story and engaging with other people? Well, my big thing is, I really want tohelp other people have an easier time than I had, and I'm also very awarethat 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 privilegesetting and So I got these things and I had the timetoe learn how they worked and understand the process. And so I'mtrying to put everything out there so that other people who don't have thatenergy can hear. No, it is hard and it feelshard, and that's just the way it's designed. But it's not your fault andyou could do it. And I, you know, I feel hopeful and sharing that. I hopethat I'm helping others. And that's always been something that's veryimportant to me. Learning about how things work and then expressing andsharing that with the people who need to understand that. Alison, what wouldyou like? People thio know about you or the work that you're doing so they canhave a better understanding of you may be a better appreciation of what you'retrying to accomplish. Well, I I came into all of this because Istruggled through all of the working stuff that I had to dio um, and I goton the system because I had to, and it helped me have the basically the emotional safety net onfinancial 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 Igot the extra energy to use that to help other disabled people getthemselves to a place of stability so they can focus on healing themselves. And it's on Lee, If you're feeling holethat you can really give, you can't pour from an empty cup. And so I view getting on these programsas trying to refill my cup. Or at least, you know, catch up the cracks that Ican 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 aself care routine, and I also have found, uh, treatment programs anddifferent things that work well for me personally, um, it's a combination ofregular exercise. Um, regular meditation, uh, learning how to, like,manage my feelings and my symptoms and making sure that I don't push myselftoo hard because what I find is I'm I'm a person of like action and push and Iwant to do everything on def. I try to do everything. I'm going to get nothingdone. So it's about finding that balance forme of doing enough to feel satisfied and productive without being tooexhausted the next day. What keeps you efficient? What keepsyou What is there something a tool that you use that it kind of keeps you ontrack, especially? It seemed like opposed to asking someone who worksfull 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'sone of I think, the struggles that disabled people have. We don't have asthma, much structureautomatically, as people dio And so I created a structure of, you know, selfcare tasks and working and things like that for myself. But I have to build in flexibilitybecause one of the problems is my body's unreliable. I have good days. Ihave bad days. And so I have this ideal day list that starts with gettingup for a walk at 6 a.m. On just goes from there. Um and I usually don't get everything onthat list done. But I'm okay with that. But I got that there. So if I wake upSo when I wake up in the morning Oh, right. I wanted, you know, I want tomeditate and I want to go for my walk. And I want to do these things. Andhere's my little order for doing them in. And part of what's built into thatis okay. And now I'm gonna work for 50 minutes, and it usually I end up working longerthan that, but I've got you know what I mean. I've got a structure toe workfrom. It's interesting. It it's not. It's not. I wouldn't say this, but it'sI 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 thinkanything different. It is the appropriate, appropriate word.Absolutely like handy, capable and all that crap. Yeah, it's minimizing who weare. Mhm identity is disabled. That's not an insult. That's just whatwe are. So with with that with disabled, um, I don't know if this is the right wayto look at it, but like a prisoner in jail, you would have Ah, veryinteresting perspective. Like a prisoner in jail would would hopefullyclearly define what they would like to...

...do if they were out of prison or theyknow what they would like to do. And in this case, being disabled. You know what you would like to do ifyou could just work. So in the working, just in the area of working and beingable thio go full time. So, do you have any work life? So people getting intowork. So I mean, for you, You you were a page when you were younger and youworked in the library and you did all these other jobs. Do you have advicefor people who are getting into work and and I maybe maybe you want tocomment 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 likehaving grandchildren. Some please listen to me. I have some very goodadvice because I know if I could just do this, I would certainly do it thisway. All right? So yeah, the prison argumenthits me wrong. It's okay. So our our bodies air are unreliable, but part ofthe goal with being able to really understand and manage your disabilityis 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 doingthis take. But first at first, absolutely. And that I can't imaginesomeone 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. Butthere's ways toe kinda reach an accord. That's really whatit's about. And So it's accepting what you have and accepting what needs to bedone to manage it and then like listening to it so that you andthe 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 allof the things. But I know that if I try to do all the things my symptoms weregoing 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 peacewith my disability and you're okay. Today, we're going to go up to New York Cityand 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 gonnahappen. 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 dayand I have to be okay with that. Mhm. And so for other people who are like newly diagnosed trying to figure outtheir next step things like that who are managing stabling conditions. Myadvice is first, take care of you and figure out what your body needs, whatyour 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 thenmight have some extra energy that you can put into your passion that you canput into your purpose whatever that purpose is. And very often that purposeor part of that purpose is work in some form. Would you say your advicewould be similar to what is the opposite of disability to able bodiedpersons? Is that is that all abled people? Persons? Nope, just Abel'sbecause because there's a lot of mental...

...health condition and a lot of invisibleconditions, 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. Theidea of advice for people getting into work. Listen to yourself. Listen to yourinstincts. Mhm. Listen to your body. Um, think about what you can do. Thinkabout 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 isgetting into the flow state where you're just so absorbed in what you'redoing 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 thingslike that. But it does take time to get there. So go in, try out your job, trysomething you think sounds interesting. And as you're trying it, mhm. Listen to yourself. And are youhappy? I read something on your post? I thinkit's your vision for our well spent and the idea and help me tell me if I'm offon This is what you're trying to do or what youare doing is allowing disabled not be the victims, not be aninspirational story, but to show them in, they're multifaceted Selves. Sowith that e think is what you're doing. Would you say that you have foundthere's actually less dissimilarities? There's There's Maurin, common withabled and disabled, that some of many if not all ablepeople have some sort of issued in that if we're able to work through any sort of issues when itcomes to work, I'm just I'm just referring Thio work that people are pretty similar. Um, ifthey're able toe, get through some of the issues that they deal with on aregular basis. Oh, yeah, I mean, basically, because you wanna you're tryingto pushaway the stigmas and by pushing away a stigma and given someone the abilityeven in their disability, then that's kind of putting everyone on an evenkeel. Are trying to Is that is that not accurate? It's well, yeah, it's that for so many people withdisabilities, 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 orthe 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. Letus feel good about enough of it because you know anybody if they feel bad, ifthey feel like a failure, it's really hard to do other things well. And so I'm trying to get us all, um, ona relatively even playing field. And a lot of people with disabilities willneed accommodations to do those things. But the accommodation should be part ofthe playing field. Um, it shouldn't be such a fight to getthem on. That's really part of able ism. And I say that because I think I couldask. I could go through this interview without mentioning, in my view, just inmy inexperience and ignorance to is I could go through this interview withyou 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, someof those accommodations and to say Yeah, you know, I love the work. I do thisand I do that, and sometimes I need to take a break from things just because Ihave, 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 justallowing the conversation to say, Well, we just, you know, And like otherpeople, able bodied people, they might need some sort of accommodation,whatever it may be, just some guy in the next booth not so noisy orsomething, because that irritates them. Or, you know, they need a long, extralong vacation or whatever their accommodation might be. And I thinkyou're doing a great job by bringing that up because I grew up, as I said inCanada and whether it's disabilities. Um oh, our other sorts of needs. Itjust 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'shard. I understand the stigma, like I understand what perpetuated or seen oryou here, Um, but it z dis heartening to know that it it continues becauseI've met. And that's the reason when I read your your bio, I was like I wantyou on my podcast because you know about work. Not because you have adisability. That that's the whole reason why I wanted you on there onhere. 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 mything is also that too often just because you have adisability, people don't want to hire you for People don't want to give youthat chance. And it's, you know, it's another thing holding people back andand 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 superconscientious. 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, Butthere's, um use the word a bunch of times. I'msorry. 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 workthat 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, butlike for me, the big thing has been if I worry about something, I'm goingto get worse. My symptoms are so what I've had to like train myself to do isseat 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 clearlycommunicate my my needs, my limitations, um, and how to do things. So, like, forme, I think one of most important lessons has been this combination oflike trust myself and be proud of what I do and don't put too much time orenergy into comparing myself, said that like ideal perfect person,because I'm always gonna fall short of that. What what I'm doing is goodenough 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 otherpeople on the outside might see it. Speaking of trust, I like that thatyou're not, you know, worrying. And that's we all need that advice of notworrying 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 ofcharacter traits are you trying to develop? Because you see that characteris important versus just going for a career, just getting a job, and I cansee that with you, You're, I mean, all the jobs you took with, like, reallydefine 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 placecharacter and integrity, and how do you define that and how? What do you liketo 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 haveto stick with you're morals to rely on yourself, andit's so important choose. Share yourself appropriately with theworkforce. 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 doneon purpose Onda sense of purpose. Like looking at that is the next step in theworkplace. Andi, What they found was people withdisabilities who are working had 250% mawr stronger sense of purpose than theaverage person, which is kind of amazing. Do they kindof define maybe why, um, I have that particular study didn't. But my personal belief is because it is sohard for people with disabilities to gain employment and because we do haveprograms in place to support us if we can't get employment, the people whohave made it toe working close to full time are people who are extremelydedicated to their sense of purpose to their job. They've got a very deepconnection. Most of them have probably minimal social lives and minimal otheropportunities because they're working full time and that takes most of theirenergy. 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 layperson's understanding. But I just remember that they did their study andI 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 aboutpurpose 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. Andthey're just all about studying purpose in the workplace on by think, um, like purpose and self efficacy or kindof opposite almost opposites to each other. Hmm. That self efficacy is thatbelief that you can do things if you don't have self efficacy. You can'teasily have purpose, because if you don't believe you can do something, howcan you do some e read something you read about whatyou're doing With thrive, thriving, wild disabled is showing people or allowing people tounderstand 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 toother people to find joy in the everyday everyday things of life? Well, I mean, one thing that I do is Igo 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'mlooking for the birds and appreciating what I see that I'm, you know, enjoyingthe first chair on me. And I'm just focusing. It's kind of a form ofmindfulness, just letting yourself absorb what's going on around you andfinding the joy in it. Um,...

...for me, at this point, part of mypurpose 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 haveconnected with were also disabled, getting their perspectives and hearingfrom 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 justdeeply essential. And for me, I take joy in my partner. I take joy in mycats. I just make sure that I appreciate what I had a pre cove it. Iwas 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, immunocompromised territory, but I know that I get exposed to a minor bug and I'mout for a month, so I'm being very cautious because of covert concerns. E I haven't been up to the city sincemarch. Um, Alison knowing knowing your your educational background. Um, butthinking of my listeners, where do you where do you place education and in thevalue of education in work? And it doesn't have to be formal. Or do youthink it has to be formal? But a lot of I mean, you're down there in the Gulfof Mexico, you know, there's some hands on stuff, and there's some goodeducation you can get, Um, whether formally or informally, where do youplace education? I think education learning is reallyvery deeply important. But it doesn't have to be formal, uh, to me. Theimportant thing is kind of keeping your eyes and ears open and being open tonew experiences and learning from things around you. And if you're in aspace where you're not getting new experiences, making a conscious effortto create that space for yourself, Um, so, like, for me, um, my bachelorsis 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 inorganizational change management. Um, specifically because at the time Istarted my own consulting business, you picked a stressful road. You just rightthrough it, OK? Oh, yeah. No, I I don't pick the easy road pottery E meananything, Potter. He could be stressful, I'm sure. How do? Yeah, that's not easyeither. Andi, kind of my thing is, I am. You know, I like the intellectualpursuits. Um uh, for me, formal education was the was mostly the rightroad. Um, honestly, grad school really, really triggered a lot of symptoms, andI had to take a year off in the middle. Uh, because I couldn't safely usestairs, my legs would collapse out from under me unexpectedly. Um, and I had abunch 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 remotelyfor 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 trulydeeply want, you will figure out a way to get there. Well, Alison, this isthis is what I'm one of my last couple of questions I have for you is whatencouragement do you have, and you're kind of throwing it out there now. Butthe 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 havelost a job. They might have lost a father or mother. But the idea ofworking and the work is good and work can be tough. Do you have any words ofencouragement?...

It is always good to have a sense ofpurpose. Toe have a goal to aim for on very, very often work is that purpose is that goal, andthere's nothing wrong with that. Um, I do think sometimes you might need totemporarily focus your purpose inward and focus on self care, and that's okay, too. And that could bea very healthy thing. So if you're having trouble findingpurpose in your work in the moment, think about what else gives you thatsense 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 ofmyself and get myself healthy. And what I do is whenever I can workbecause 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 asI am. So I think that's a a focus on your purpose and very often that willget you to the right work. But if you need to take a little timetoe internally focused. That's healthy too. Alison, how can people reach you?How can people find you? Alright, My blogged is W w w dotthriving, well disabled dot com. Um th r i v i n g um And I also am, umI'm on. I have a Facebook page and a Facebook group. You just search forthriving well disabled little pop. And I've got a twitter account, uh, thriving W disabled. Um, I also have ahPinterest account as well. So basically, search for thriving while disabled. Youwill find me. It's a good name. Yeah, I'm I'm proud of it because a lot of people with disabilities arejust feel like all they could do is struggle.Um, and my thing about it is, even if you're struggling in the moment, ifyou're trying to improve your life, you're aiming towards thriving, mhm andlike that's the goal. The goal is to thrive. The goal isn't to survive. Thegoal is to thrive. But first you have to be able to survive and have thatbase to be able to go up to thriving. Alison, I have one final question foryou. 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 Idon'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 aproject. And so for me, it's all about creatingprojects for myself. And very often those projects aren't work in some formor other. So that's that's what Allison Hayes thriving while disabled. Iappreciate 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 BrianV. Be sure to subscribe, follow and share with others so they to beencouraged in their work. I hope that you have yourself aproductive be a joyful day in your work.

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