Speaker 0 00:00 KPI <inaudible> 90.3 FM Minneapolis. Yeah. I dot
Speaker 1 00:59 O R D catches also on our podcast. Thank you for joining disability on progress, where we bring you insights into ideas about end discussions on disability topics. My name is Sam I'm. The host of this show. Charlene doll is my research woman. And thanks to Matt Finkel, who engineers this particular episode tonight, we're speaking with Jean Abbott. Jean is the author of a book that is entitled misdiagnosed. My 30 year struggle with a disability or this debilitating disorder. I never had wow. Too many DS for me, I guess. Um, Dean, thank you very much for coming on the show. Thanks for having me. I do agree that title is a mouthful.
Speaker 1 01:49 My apologies. I know there are times when I can't even get it all out. So don't worry about that. I, I feel like this is such as, I think I say this with every show, but this is such a strange time. And I was so looking forward to you. I just want to tell her listeners Dean and I live about two and a half away from each other. It's so funny. Cause I had no idea that she lived in the same city as I and uh, intelligence. She was going to send me her book and then she told me and I was like, Oh, Oh my gosh, it's such a small world. And I was so looking forward to meeting you in person and uh, hopefully that will just have to happen later in the fall. I'll try to make it to your next speaking thing or something. But meanwhile, thank you very much for being able to, uh, company me on the show tonight. I greatly appreciate it. Let me talk, start out by talking a little bit about, um, the diagnosis you got. It was, um, a diagnosis of spastic diplegia. Um, and I was wondering how you
Speaker 2 03:00 Were diagnosed and what that is. Sure. So spastic diplegia, um, nowadays actually falls under the umbrella of cerebral palsy when I was a really little kid. It did not, but it really is, um, the spasticity in your muscles. So really growing up, I had challenges doing every kind of task. You can think of everything from holding a pencil to do my homework at night, to just simply being able to walk because my arms and my legs were too spastic, um, receiving that diagnosis. Um, I had been seeing one of the top neurologists in Minnesota, if not the country, actually people came from all over the world to see him. And, uh, he initially had a hard time diagnosing me cause all of my tests came back normal. You know, my MRIs, my cat scans, uh, but all my symptoms led him to believe that I had spastic diplegia.
Speaker 2 04:01 And so that was, um, the diagnosis he gave me, um, around the age of five, but my parents were still just wanting to put their minds at ease that they received the correct information. So then they took me to one of the leading hospitals in the country and I went there and I was there for about a week of testing, a lot of the similar tests and they confirmed that. I indeed had spastic diplegia and also kind of ease my parents' mind and letting them know that the doctor that originally diagnosed the top, all of them. So there was never really a question about my diagnosis being incorrect from that point on. And I had seen many other doctors over the years and no one ever questioned my diagnosis, but I think that was in part due to who originally diagnosed me. Ah, interesting. And so I'm just wondering now, uh, since it would be under the, uh, under the umbrella of cerebral palsy, how severe would you categorize that you had this?
Speaker 2 05:07 Like how well, you know, it's kind of hard to say because, um, it got worse as I was getting older. Um, and I think it's important for your listeners to know that my symptoms are really, um, elevated with stress and it was also always determined by how much sleep I got. So when you're younger, you have less stress and you get a lot more sleep. So that's probably part of the reason why my symptoms weren't as bad. Um, but by the time I kind of went through puberty, my symptoms became a little bit more worse. I had more trouble walking. Um, and then by the time I was 18, uh, when I went off to college, I started using a mobility scooter and I would just do everything I could to keep my stress levels low and get as much sleep as I could and get enough naps.
Speaker 2 06:03 And it really wasn't until I had my two daughters that, uh, my symptoms became so much worse. So it is kind of hard for me to say like a level of how severe it was because it kind of kept getting worse. I mean, I know that there are people that were definitely worse off than I was, but then I know my symptoms were also worse than others. So I would probably say kind of in the middle of the road, how does your family deal with the diagnosis, the original diagnosis or the, yeah. And I, the original diagnosis, um, acceptance, you know, my mom said, you know, there were a year, there was like a year or so where they didn't know what the diagnosis was. And if my mom said that was really, really hard that not knowing. And so once they knew what the diagnosis was, they were really able to kind of prepare themselves and to accept.
Speaker 2 06:57 And it was like putting a label on it, I suppose. Kind of. Yeah. Yeah. And knowing that at that point, you know, it was something that shouldn't get worse. So that helps. And you know, I just, they taught me from a very young age by actions that this disability wasn't going to define me that's it was part of who I was, but I could still go out and do anything. I put my mind, you. And for that, I'm very grateful. Do you feel like growing up with a disability was harder for you to make friends? And if so, why do you think that?
Speaker 2 07:35 Um, you know, I don't think it was, um, I always had really good friends. I was always really social. That was actually kind of, you know, I have two other brothers and they always tease me like brothers, what, you know, physically, I had a harder time doing things, but it never affected my speech. So they always tease me a lot about, well, she might not be able to walk, but she can sure. Talk a lot. So I didn't have any trouble really making friends, um, elementary school, Alaska friends. Um, but I will say once I got to middle school, it was a little bit tougher, not necessarily making friends, but it was harder because that's, you know, the age where yes, I had a bigger target on my back, you know, I was the girl with the funny walk. So that was challenging to navigate that, but I always had friends. I always had kids to hang out with in the evening, um, you know, go to movies with play games. Um, obviously I never played sports because I had difficulty walking, so I never really option, but I always call the middle school years, the subhuman years. So, and you know, people just kind of, you know, not really act like human beings, they're just kind of in their own little bubble space. Um, do you think, uh, that because you had a disability that it made a difference in the type of friends you chose?
Speaker 2 09:07 Um, I mean possibly yes. I mean, I do think about how every piece of who we are kind of writes on the wall of who we become and you know, the people we interact with. And that is something that I feel like by being physically disabled, in some ways I had easier teen years, not physically, but, um, you know, I wasn't the girl being asked out on dates, so I didn't have like that pressure, um, to be intimate with someone I wasn't the girl that was being asked to go to all the different parties. So I wasn't being pressured into your drugs and alcohol. So when those ways, like I kind of avoided a lot of that really hard peer pressure stuff. Um, and I think, you know, the friends I made, you know, they're lifelong friends. I mean, a lot of them are so women that I talked to today.
Speaker 2 10:03 So, um, like just really good, long lasting friendships. Um, my friends would always say too that once they got to know me, they actually just kind of forgot that I even had a disability. So I think once you truly get to know someone, you don't necessarily see what their show is. If that makes sense. I find that one of the biggest compliments, if somebody tells me that, that they forget I have a disability. Yes, yes. I can remember being in college. And one of my friends is like, do you want to go for a walk around the Lake? Cause that would be great, but I can't. Yeah. But of course I took my scooter, but you know, it was just kinda funny, like those, those types of things where they would kind of forget that I couldn't do those types of activities and you're right.
Speaker 2 10:49 It is, it is an absolute compliment. I'd like to talk a little bit about your book, miss misdiagnosis, my 30 year struggle with a debilitating disorder. I never had. What made you decide to write a book? Oh, well, you know, I have always been one that enjoyed writing. Um, and, and you know, even in elementary school, when we would get a writing assignment, I was always excited. I always loved to write and um, growing up, you know, that passion for writing always just kind of stuck with me. And then, um, I did think at one point, like I'd really like to write a book about my life, but then it was kind of like, well, yes, I'm disabled, but there's really nothing extraordinary about my story. So I thought, you know, what would make someone want to pick up and read it? Uh, but then when I received my correct diagnosis of dopa responsive dystonia and started taking the correct medication and everything changed overnight, I thought to myself now you've got a great ending to your story.
Speaker 2 11:55 And I decided to start working on my book as the book goes, when I was reading it. I mean, as any book like this type of book, um, there's many personal and private moments in the book. And I just want to kind of ask you, what was that like putting your personal, you know, information out there for all to know? Well, I'll be honest with you, Sam. There are times that I think back to that and I cringe at the thought of what's out there for everybody to read. I mean, really cause there are, I mean, there are things in there that I wrote that I'm going to guess. I probably never told another soul about, but, um, I was just, I was one that when I was writing it, I decided that I really wasn't going to hold back a whole lot. Um, that I just could, I don't know if you ever read, uh, an, uh, you know, a memoir by someone and they're in the middle of saying something and then it just kind of stops and you just feel like, I want to know more and you feel a little bit jumped.
Speaker 2 12:59 I didn't want to JIP my readers because, and I thought I'm just going to suffer through the embarrassment. I'm going to say it all. Um, and I'm, and I'm, I'm grateful I did because so many people have said how relatable it is, whether they're physically disabled or not. Um, there were challenges that I put in there that you've been able bodied individuals kind of go through. And so yeah, I look back and I kind of cringe. I'll be like, Oh my gosh, I can't believe I put that in there. You know, it's like embarrassing. I mean, yeah. So, but even going through all the different stuff that you felt, it was hard to, you know, there must've been some stuff you tell us, I don't think I'm going to put this. Um, how did you decide that? Where did you drive a line? Well, I guess I really didn't hold back a whole lot, but, um, I guess there were where I drew the line was, is this really figuring out, does this matter in the story?
Speaker 2 13:58 Um, cause obviously I don't want to bore my readers with stories that maybe would have had a little bit of an impact, but they're really not prevalent to the actual story. Um, I just wanted to, I wanted to make sure everything was very entertaining. Um, and then I guess I also wanted in some sense to maybe, um, protect others. Like I, if I talk about something that is about my family members, I didn't go into details about what maybe their point of view was because I just kind of sat as that's their story as hell. And so I was really just telling my story, my point of view from how I grew up and um, my adult years and all that really just making sure it was my point of view and, um, try not to put words in other people's mouth, I guess if you will. And what did you think writing such a book like this, how did you feel like it taints to your life and how did it make a difference with you? Oh my gosh. Um,
Speaker 2 15:06 I felt super accomplished. Um, you know, they say a lot of people start to write a book and never finish, and this was something that I knew I had to finish. And I'm, I'm the mom that will tell my kids, like when they're playing a game and one of them wants to quit, I'll say, Oh, you're not, you're not going to quit. You're going to finish this, you know, just finish the game. Uh, you don't, you don't quit what you've started. Um, no idea how many times my daughters reminded me what I would say. I just don't know if I can do this anymore. I don't know if I can finish this book. I may be right at me saying you can't, you can't quit what you start, mom. Um, but I mean, cause it is hard and it was almost like the more I got into writing, um, the more overwhelming it got, um, you know, when you first start and you're just dealing with I clay, I've got two or three chapters, it's easy to kind of go back and find things.
Speaker 2 16:03 But when you get to a point where now you've got 200 pages, ah, yes. And you're like, okay, I don't really like where this store, this particular story is in the book. I want to move it. It's very daunting trying to figure out where to put it. And I did get to a point where I thought, I just didn't know if I would be able to complete it, but I, um, I have a lot of amazing people in my life. And so many of them were willing to help me any way they could. I mean, throughout my entire life, you know, a childhood and even into writing the book and one of my, um, my co one of my counselors in college who actually helped me with all of my accommodations, um, she put me in contact with an English teacher in Wisconsin who was willing to help me edit and organize my book. Oh, that's awesome. And that saved me. Um, and it's because of her that, um, her name is Jan Pavelski and it's because of her that I have a book
Speaker 2 17:07 It's because of her that I have a book because I don't know that I would have been able to finish it, to be honest, you know, three kids and busy. So, and I also put it in, I, at that point in time, you know, my story had gone viral. I had been on the today's show. People were starting to ask me to speak and I was turning those down because I thought I have to finish my book first. And I knew I couldn't put too much on my plate because if my stress gets too high, then I have difficulty walking and moving my arms and hands again. So I'm just very proud that I finished it. And it's something that my kids will be able to see and be like, you know, if mom can do that, I can do XYZ, whatever they want to do. What's interesting is at the end of your book, which I haven't seen very often is you ask several questions, almost like you're asking the reader to contemplate about what they've read. What made you do something like that?
Speaker 2 18:07 Well, you know, whenever I meet people and um, they learn about my story, they always ask a lot of questions. They they're just really intrigued by it. And, um, when I did that, I was really just thinking that I thought this would be a good book for book clubs. And so this would allow them to have some already questions provided if they decided to do you know, questions about the book and have a really good in depth conversation about the book. And, um, I actually, when people have their book club meetings and they choose my book, I'm in the twin cities, I am often invited to go to them and it's a lot of fun. And then we just released it down to discuss the book and go through those questions. And it's a lot of fun. So, and my mom actually was helping me with some of the questions.
Speaker 2 18:54 So one of the questions that I, I find, um, that I really particularly like was when you asked, do you feel like having a child with a disability or how do you feel either? How do you feel, or do you feel that having a child with a disability changes the family dynamics? And I wanted to ask you what you thought about that you feel that that is so, yeah, that's a great question. I think that's actually one of the questions my mom came up with. Um, you know, it does change the family dynamic. I mean, again, like it's kind of like personalities can change the family dynamics. Um, you know, when my family went on vacations, we had to do things differently. Um, you know, we weren't going on family vacations where we were going on hikes. I mean, we were going on family vacations where you kind of saw a lot of it from the car windows or you, you know, hop on a little tour, you know, like the little trolley tours that go through town and explains everything.
Speaker 2 19:58 So like our family vacations were, were different. Um, you know, we, my brothers, um, you know, they never taught me, treated me differently. They treated me like any other like able body sibling, uh, except at the same time. Um, I know that they were protective of me, you know, if anyone would have said or done anything they would have, um, they would have definitely been standing up for me. Um, and they're still like that to this day. So, I mean, it definitely changes the family dynamic. Um, but I think we would've had a really good strong family regardless. I was gonna say, that's one thing that you really didn't. I didn't, you didn't let on that. It taints hugely.
Speaker 1 20:48 I mean, it was clear to me that you had a lot of family support, which I considered you very lucky. And it was, I was glad to see that. And do you think that that paid played into, I guess how much of that do you feel played into your success? Having that family support like that?
Speaker 2 21:08 Oh, a huge, huge, uh, factor in my, in everything that I've accomplished. Um, when I speak, um, whenever I share and I get to the end of my presentations and I put up a picture of my mom and dad, I almost always get choked up, um, because it truly is because of my parents that I am the strong, positive, optimistic, courageous woman that I am today. Um, they raised me in such a way where A, they weren't ever going to let my disability get in my way. They weren't ever going to let me use it as an excuse. They pushed me
Speaker 2 21:54 To my limits, you know, they, they weren't unrealistic. It. Wasn't like, okay, gene, you're going to join baseball when nothing like that. I mean, they were realistic about things, but, um, Oh, so supportive and yet fun. Like they knew how to laugh. We laughed a lot. Uh, we had a lot of fun together as a family. Um, and I feel so blessed because I know not everybody has that. I think I really won the lottery with that. Um, I know that, um, and you know, it is interesting because when people see me from the outside, like back when my, my disability was very noticeable, people, I think would feel sorry for me, but I know some people would feel sorry for me because some people would even downright just say that, Oh my gosh, life must be really hard, but I felt so fortunate because I had such a supportive family. And it's interesting because I can recall having a friend that, um, her parents were alcoholics from the outside, her life looked perfect, But she had a childhood that she struggled through. So, you know, you just never really know what others are dealing with. Um, but I feel just so incredibly blessed and I, I can't imagine going through life another way. I mean, my parents and my brothers are amazing.
Speaker 1 23:18 Do you ever ask your parents where they got their guidance or how they even decided that they were going to almost demand that you have as normal life as possible?
Speaker 2 23:31 Oh, you know, I guess we never really had that conversation, but, um, you know, I can remember like an elementary school, um, my special ed teacher, you know, talking to my parents and saying, um, you know, I think she should maybe try and do an adaptive sports. And I think my parents knew that wasn't something I'd really be interested in, but yet they still act asked me. And I was like, no, I don't want to do that. That was just my own personal thing. And so they just said, okay, like they didn't push me on that. Um, They just Not, man. I almost forget even what the question was. Um,
Speaker 1 24:10 How, when I think about my parents, I just saw, Aw, you know, a couple of times you talked about when friends or people around you see you fall in the book and do you think their perception of how they saw you after that changed? Um, I guess what do you like, what do you mean? Like they perceived you as being, I don't know, less than, or, or that they perceived you being weaker because that, you know, they saw, okay. You know, those things are very hard when you have a fall of, you know, it's humiliating, first of all, anytime somebody sees you do something out of the ordinary that you didn't want them to see you do. So do you think that changed with how they saw you as
Speaker 3 25:03 No?
Speaker 2 25:04 Sure. I get ya. Um, you know, it's funny because yeah, when you fall, it is, it's like humiliating and like, as you're getting yourself up off the ground, you're quickly looking like to see okay. Who all saw me. Um, and you know, I, I think the world is full of a lot of really compassionate people. And so I don't think when someone would see now as an adult, like looking back, I don't think people looked at me and thought, Oh my gosh, she's so weak. Or she should, you know, be using a wheelchair all the time. Or I think people just, you know, they think to themselves, Oh, that poor girl just fell and then they move on and don't think about it. You know, I, I think, um, I dunno, like what is there, is there some phrase about, you know, people are spending a lot less time thinking about you than what you think that they're thinking about you and I think that's true. I really do. Um, and I think people are compassionate though, too, when someone sees someone that they fell, um, you know, they're not thinking that you're lesser of a person, that's how I feel. And I think maybe that's just me being hopeful too. So
Speaker 1 26:06 Yeah, I, I do remember feeling, um, when I was going up, I sense of, you know, when people stare and I remember this very much angering, especially my mother and I thought, I didn't know how to take it because it was, it was so much a feeling of this shame or feeling like anger. Like, why are you staring at me? And finally, I just decided, dang, I must be pretty exciting if that's all you have to look at. So my response was always, wow. I guess I'm the most exciting thing you've seen today. Huh? You know, what else, like you said, what else do you do really? There is an interesting incident that you talk
Speaker 2 26:44 About, about, um, a parent taking in with you when you were driving. Can you talk a little bit about that? Cause I'd like to kind of come at it with a different angle, but tell me how you saw that incident. Oh, um, so yeah, I was leaving high school one evening and by the end of the day, I could hardly walk out to the car and it was just exhausting. And after I sat in the car, a parent came and knocked on the window and asked to take my keys. Cause she didn't think I should be driving. And I thought she didn't think I should be driving because I was physically disabled.
Speaker 2 27:21 And then, you know, Sheikh was kind of arguing with, with me at the window and I'm saying, I'm fine, I'm fine. I can drive. You know? And then as she walks away from the car, she saw that I was parked in a handicapped spot and you could just see her face fall. And she looks back at me and this, you know, just really this look of, Oh, I mean, shame, sorrow, like just feeling horrible. And that was when it dawned on me that she thought I was drunk. And that was just, Oh, I mean, as a teenager, I mean, that was just horrific. Cause it's like, Oh my gosh, this is how the rest of the world sees me. Um, but yet I also say, I look back and say, if she truly thought I was drunk and obviously she didn't realize I was in a handicapped spot, she was doing the right thing.
Speaker 2 28:15 Yeah. I was thinking about that when I was reading them part and being a parent myself, I was thinking I would do that to somebody. And I would think it would be filling that you cared enough for them or someone else that they could hit possibly. If you wanted to try to stop them from driving, if you really thought that that was a problem. Did you, did you, do you feel like you had anger after, towards her or were you able to understand that she was really, I think sincerely tying, it seemed like that it wasn't a, a dig specifically at you with your disability? I think it wasn't really something that I realized until I was working on the book. Um, you know, I went back and basically relived a lot of moments in my life and then just get a fresh perspective of it. Cause now it's like, now you're a mom and I don't know I'm an adult, but at the time I was thinking, you know, what is like, what is she thinking? She thinks someone's going to get out of high school at the end of the day and they're going to be just slosh, you know, in class, you know? So I was mad. Like I was, I was mad and hurt. Like that was one of the few times in my life where I really broke down crying because of my disability.
Speaker 2 29:32 There's a, another interesting spot in regards to the book while there's several. But when another one that I noticed is, was, um, you wrote
Speaker 1 29:42 A story about a Fox and it was really, uh, fun to hear how you just kind of were so proud of it. And, um, you had a difficult time in one then the telling of one of the classes and it, and it totally changed things for you. Can you talk a little bit about that?
Speaker 2 30:02 Oh, sure. Yeah. I was so proud that I won this writing contest and then the prize was to go and share it to all, all the other classrooms in my grade level, which at the time I didn't have a fear of getting up in front of people and speaking. Um, but, but then when it got to the last classroom, um, my good friend was in the class. And then that was when I noticed like people were actually looking at me and I really froze off and I started shaking uncontrollably. And um, from that moment on, I had a fear of speaking in front of people like standing up in front of people. I could have a conversation, but not like, I mean, we're talking like, you know, that was in, I think I said fourth grade, like when I was a junior in high school and I found out we had to give a two minute presentation at the end of the year in English class.
Speaker 2 30:53 Like I was sick. I was sick to my stomach with worry about having to get up and give that two minutes speech, which is funny because I ended up getting a degree in communications. And now I, you know, when my, after my story went viral and I was asked to speak at different places and I had made the decision when I received my correct diagnosis, that if I was given the opportunity to try something that I physically couldn't do before, I would give it a try. So when someone asked me to speak to a group of medical students, I was like, sure, I'll do that. And then as soon as I hung up the phone, I thought, Oh my gosh, what did you get yourself into? I have this fear of public speaking all stemming from that Stuart story. I wrote about a Fox, which I don't remember anything about that story, but, um, I'm glad I faced that fear because in facing my fear, I discovered my passion. And, um, you know, if we don't face our fears, we're going to get stuck in a rut and doing the same thing all the time. And we might really miss out on something. It was interesting.
Speaker 1 31:55 I think it says a lot about, um, the human while sometimes human spirit or, or actions of that you had such a, even at the beginning was a real positive thing. You want a contest and you were telling the story and it was going off really well. And then that one, like flip or oops, you know, happened. And then that colored a long time in your life. Period.
Speaker 2 32:19 I find that really
Speaker 1 32:21 Interesting, you know, that something, you know, one small thing sometimes can just, uh, take you in a different direction.
Speaker 2 32:30 <inaudible>
Speaker 1 32:33 What was your relationship with your doctors? Did you feel, did you feel like they treated you like you were a human, like, did they believe you, did they, did you feel like they listened? How, how how'd you feel that was going for you as you grew up dealing with the disability?
Speaker 2 32:56 Oh gosh. Doctors, not my favorite place to be. Um, and I have a lot of doctors that I've always really liked, so I don't mean to say it like that, but you know, it's very draining and going to the doctor's office when you go with optimism, you know, as one does, when they're physically disabled or dealing with any type of health issues. Um, you know, I had some doctors that listened really well. I had some doctors, I had a great bedside manner. I had a couple, I had a horrible bedside manner. Um, like the doctor who originally diagnosed me with spastic diplegia, um, you had a horrible bedside manner. I mean, I strongly disliked going to go see him. Um, and I remember asking my mom, I'm like, can we just go to a different doctor? And you know, she's saying, we're not going to see this man to make friends like, he's one of the best.
Speaker 2 33:50 Um, so just not a very good bedside manner. Um, but then later in my twenties I had a doctor who I absolutely loved. He had the most amazing bedside manner was so compassionate, so caring, listened well, but, um, he wasn't treating me properly. Um, and when he was questioned, he wouldn't, uh, I guess seek outside information. Um, and so I think it can be very challenging at times to find a doctor that has it all to great bedside manner, as well as the knowledge. So I absolutely love it. Um, I mean, not to say I'm testing doctors, but sometimes when I go into see a new doctor, um, and when I tell them that I have dopa responsive dystonia, when, when there's a doctor that says, Oh, I've never heard of that. I'll have to look that up. I immediately think that they're just, I just think they're a great doctor because so few doctors have actually heard of what I have. Um, and I think to be able to admit that there's something, I don't know, just love that they've got a little bit of realism to the ego and I just go, I just loved that. So, I mean, there were good ones. There was not so great ones. Um, you know, doctors, aren't God, they can't solve every problem. They're going to make mistakes. And I'm okay with that. It's our job as the patient as well to advocate for ourselves.
Speaker 1 35:24 And I think this is a real, um, a real situation for most of most people with disabilities, you know, they go in and what they want, right, is a doctor that will be a real person that will listen to them. Even if they have little things and feel like they're being, the person is being heard and also treating them on a level of, you know, intellect that they feel is appropriate and often that doesn't happen. Um, and I think that that's kind of a difficult thing for people with disabilities is that you go to that doctor and you're really trying to seek out things otherwise you wouldn't be going to them. Um, so I want to talk about the, the relationship department, um, throughout the book you talk about, you know, how you didn't really have relationships with, with boyfriends in high school so much. And, and you felt like you were concerned. Not, not, I mean, I think all young teenagers, older teenagers even are concerned about, Oh my gosh, am I going to have a boyfriend? Am I what's it going to be like, am I going to be able to do this? Right. But you, you came at it and it's like, you almost thought I probably will never have a serious, real relationship as far as, uh, you know, getting married and this and that. And you have goals and dreams and I'm wondering,
Speaker 3 36:59 Yeah.
Speaker 1 37:00 I mean, clearly you felt that way because you had a disability. Yeah. And if you had not, you probably wouldn't have seen me. You would have the same worries as all the other girls, but maybe not. It's certainly not that you would have never had an intimate relationship.
Speaker 2 37:19 Yes. Yeah. I mean, um, I mean, I thought I would never go on a date. So, I mean, I just, you know, I mean, I think it takes a special person to, um, I mean, a lot comes along with someone with a physical disability, same with someone that is dealing with mental health issues. I mean, but I guess everybody has something that's what you don't realize when you're a teenager, everybody has something. Um, and it's just finding that person that you can be compatible with, um, that can accept, um,
Speaker 2 37:57 Your differences as well as appreciate what you do have to offer and to be able to look past the rest of it. Um, you know, and I, I just didn't really, I mean, I can honestly say that I don't know that I would want to sign up for that. Um, it's hard, it's hard being disabled. It's hard to, um, you know, have a close relative with a disability. Um, it's hard. And I was okay with that. Like I understood that and I just thought, well, that's okay. I'm going to be an aunt and I'll have nieces and nephews and I'm just going to be the best aunt ever. And I was okay with that deep down inside. I think also, because I think if you tell yourself yourself something long enough, you start to believe it.
Speaker 1 38:44 But I think there's a topic that affects a lot of people with disabilities. And I, I kinda sometimes cringe and don't get me wrong. I don't think there's anything necessarily wrong with this, but what I don't like to hear is, Oh, you should go date somebody with a disability. It's kind of that, you know what I'm saying? Is that what you're saying? It feels like, um, um, so what are you exactly saying here? And I think that, that says a lot on that perspective of that person and even society.
Speaker 2 39:21 Yeah. I mean, I think people should go date people that they enjoy to be around, you know, be with someone that makes you laugh, be with someone who can appreciate what you have. I mean, you know, just, it's not easy to, I mean, of course when you meet someone for the first time, the first thing that you're seeing is the order of them. But I think if people get to know someone, um, well enough, you start to forget about what they look like. I mean, I don't know. I mean, I think, you know, I can even make think back to being in high school in college and, um, getting crushes on someone because you got to know them so well. And you just thought they were so funny, but when you first saw any work that attracted to him, if that makes sense. Um, but yes, I don't think someone should specifically ask someone out because, or date someone because they are a part of a minority, you know, uh, because they're different. That's not like the proof something. I mean, that's just not, um, no, I mean, no one should have to do that and no one should feel that they should have to do that.
Speaker 1 40:28 Did you ever feel pressured, like to try to look like you didn't have a disability in regards to the dating realm?
Speaker 2 40:37 Um, no, because I think what I was always noticeable, even in sitting, I guess I was noticeable in the morning I got around pretty well and I wasn't as noticeable. Um, but I mean, I have to admit like being in college and being the only girl, um, in a mobility scooter, I mean, I knew I kind of stuck out like a sore thumb. Um, but then I also thought, well, if I wasn't in the mobility scooter and I was actually trying to walk around this whole campus, I'd still be sticking out like a sore thumb. So, um, you know, I think I just finally got to a point where I accepted who I was and I was okay. Like, I, I was OK being single and I, you know, I enjoyed college. I had a lot of fun. I had a lot of friends and I did go out on a few days. So who knew, I mean, you just never know
Speaker 1 41:32 This KVI, 90
Speaker 2 41:34 Points, Bay, FM, Minneapolis, and kvi.org. This is disability and progress. My name is Sam. I'm speaking with Jean Abbott and gene is talking about her book misdiagnosed, my 30 year struggle with a debilitating disorder I never had. And, um, Jean, I want to know, like how much do you feel that, um, I mean, you w in your book, you, you go into talk about when you left Minnesota. So you actually went to Georgia, which is an interesting thing. Cause you talk about kind of the, the race card and the disability card and all these different prejudices that you, it almost sounds like you didn't really feel like you noticed them as much in Minnesota, although we now know they are where they are definitely here. Um, yeah. Um, can you talk a little bit about what that was like for you when you had your first, it seemed like it was almost your first experience with discrimination, the taste of discrimination in a job position.
Speaker 2 42:47 Oh, Oh yes. Oh my gosh. On so many levels because you're right. I do talk about, um, the race piece of it as well. Um, you know, I was working at a temp agency helping to place people in temporary work situations and being told by my boss to put a certain Mark on a card to indicate whether someone was black or white and I wouldn't do it. I didn't tell them I wouldn't do it, but I didn't do it. And I, you know, I just was like, cause in my mind I was thinking, what does this matter? Um, and then later in that job, uh, you know, he called me into his office, but my boss called me into his office one day and said that I wasn't performing my job to his standards. And he just started listing off all these things that I, that he didn't think I was doing fast enough.
Speaker 2 43:51 Like he said, because I didn't answer the phone on the first ring and who does it anyway. And when a client would come in that I wasn't getting up to the front desk fast enough. Um, and among other things, um, and then saying, but this isn't because of your disability, this has nothing to do with your disability. And, uh, I mean, it took out a whole, my courage to not just break down in tears in his office. I went home at night and I was just sick to my stomach. And, um, I didn't go back to that job. And, um, I, I, you know, I'm not one to like ever want to Sue people or anything like that, but I did file a complaint with EEOC, um, equal employment. Um, no, I can't even think of the acronym, but, um, because I just did not want another person going through that again.
Speaker 2 44:53 Like it was just, so it was so appalling to me, um, and then telling them to, you know, kinda marking their cards on people's race. And I was just, you know, and that was something I didn't experience up in Minnesota, but I guess I didn't experience it up in Minnesota because I mean, I just really didn't even know. I think I was in a graduating class of like almost a thousand kids and I think there was only one African American in my class. So it was just something, it wasn't that I, it didn't happen here. It was just something that I was never around because I wasn't around a lot of people that were disabled and I wasn't around people that were of another race other than Caucasian. So, but when I went down there in many ways, it felt like I was living in another country. And I got, I noticed that people noticed me more. Um, I did not feel like I fit in.
Speaker 1 45:54 It's interesting too, because I mean, you're lucky that you had the opportunity to choose not to go back. Um, not any, not everyone in that position would have had that. And, but the second thing is, um, you, you, even though you filed the complaint, you didn't push as hard as you could have and they suggested that you don't. Do you want to talk about what their reasoning was?
Speaker 2 46:21 Sure. Well, um, they said if I started a claim, I would probably be dealing with the court system for about two years. That would be very costly for one. But, um, the other was that I had received another job offer very fast, that actually paid a lot more money. So he's like, you're not really, you're not going to gain anything. Cause the only thing you had gained was the three weeks that you didn't have a job, you know, the, uh, payment for that. Um, but I think they also knew that that attorney, um, he knew that I wasn't planning on staying in Georgia for that long. Um, and that if I started disclaim, that that was going to keep me tied to Georgia for longer. Um, and then I, but he did say that my complaint would be in their records for a very long time.
Speaker 2 47:12 I don't know how long you stay in there. I don't remember. But, um, so he said, you know, if they were to ever do something like this again, and someone else filed a complaint that it would, that would show up that interesting enough, like the employer then, you know, because I had filed a complaint, they get to file their response to which they said that they did not know I was disabled, which you knew was a lie, which I knew was a lie. And then even the attorney said, I haven't even seen you lock that. He goes, I can tell by your arms and your movement that you clearly have a disability. Right. And like he said, any judge that saw you take a stand, you know, and go to court is going to know that you're disabled. So that was a lie.
Speaker 2 47:59 I want to go in to talk about you finding out that you were misdiagnosed. Do you want to cover this part? Sure. Oh, that's my favorite part. Probably even notice my voice change cause I get so excited. Um, I mean it was a very long process of seeing lots and lots of doctors to get to this particular point. But, um, it was good Friday, about 10 years ago that I had an appointment. Um, and I'll say it was dr. Martha Nance, um, who is a neurologist here in the twin cities. Um, part of, um, you know, uh, perfect Nicolette and I'd never seen her before. She was referred to me by another doctor who was questioning my diagnosis. I was not in a good place physically at that point in my life. Um, so I was not able to drive myself to that appointment. My brother took me there where we met, uh, my husband, Steve at that appointment.
Speaker 2 48:56 When my brother pulled up to the clinic, he knew that I wasn't going to be able to walk in. So he grabbed a wheelchair from inside the lobby, placed me in that wheelchair and wheeled me in to that appointment that would just forever change my life. And dr. Nance, you know, watched me walk. Um, it was really a, uh, an appointment of collaboration because, you know, my brother talked about what it was like for me growing up with this disability and Steve and I talked about what it was like, um, you know, being a disabled mom and how the struggles I had now. And she asks me to walk. And then, um, it was brought up that when I would get a good night of sleep, it was like someone pressed a reset button and then I could walk again and her face just lit up like a child on Christmas morning. And she started just talking really fast. Like, what if I told you, I don't think you have faster to pleaser, but I think you have dopa responsive dystonia. And with the correct medication, you'll be able to walk from point a to point B without even thinking about it.
Speaker 2 50:03 And I was, I mean, so skeptical denial all the way I wasn't going to fill the prescription. Um, but then decided you. And, um, we went out to dinner that night, my family with, um, some other family and I was just really tight and spastic cause I was exhausted from the day doctor's appointments always wore me out. And I wasn't sure if I'd even be able to feed myself with a fork. And I remember that a doctor had told me, um, you know, once I was of legal age, if I had a glass of wine or a beer that my muscles would be able to relax enough just to be able to kind of function. So that's what I did. I had a glass of wine with dinner and when it was time for Steve to walk me out to the car, instead of him half carrying me out to the car, I stood with ease and walked alongside him and really total denial.
Speaker 2 51:00 I mean, I was thinking, it was like, Oh my gosh, that's the best glass of wine I've ever had. I'm not thinking it was this, this new medication that I had just taken hours before. And so, um, you know, the next day I had had a great night of sleep that night. So when I got up the next day and I was able to shower on my own, I really didn't think anything of it. But then the next day it was Easter Sunday and I was waiting out in the church parking lot, um, for the Easter egg hunt to start. And Steve said, I'll be right back. And he left me standing there all by myself and panic really going through my head, like I'm gonna fall, I can't do this. Um, but then a calmness coming over me and realizing that this medication had indeed worked.
Speaker 2 51:46 And, um, my faith was always a really big part of my upbringing. Um, really just believing that God had a plan for me trusting what his plan was. And, um, so for me that was really a moment of connection, uh, with Jesus because it was Easter, um, the day of resurrection. And so, and just realizing in that moment, on that day that my life had changed. My whole family's life had changed and knowing I was never gonna waste another minute and do whatever I could to just make the most of the gift that I was given and so awesome that you had that particular appointment as well. How can people get your book? So, um, it is available on Jean abbott.com and if it's ordered there, you can get a signed copy. Um, it is also on Amazon, but I do think they're running out of copies.
Speaker 2 52:42 There's not a whole lot there right now, but it is on Amazon, uh, as well as on Kindle. Okay. Teen abbott.com spell your last name. So people know sure. A B, B O T T. So kind of like Abbott and Costello and he would give talks and speak. I do. And how can people contact you for that? Yes. So if anyone's interested, um, whether it's joining them at their book club or having me come speak at one of their events, um, they can just email
[email protected] and fill out the contact form and I can get back to them and very, very quickly. What do you
Speaker 1 53:26 Want people to get from your book? Oh, you know, I think that we all face challenges. No one gets off Scott free, but no matter how hard it gets, no. How, no matter how dark your day may seem that tomorrow is a new day and you never know what tomorrow can bring. Thank you so much for joining me tonight, Dean. I really appreciate it. Thank you. It was really fun. Thank you so much. This has been disability and progress. The views expressed on the show are not necessarily those of KVI or its board of directors. My name is Sam and I produced the show. Thank you so much for Matt Finkel engineering, this particular. So Charlene doll is my research woman. We've been speaking with Dean Abbott. Dean had a book or has a book called misdiagnosed. My 30 year struggle with a debilitating disorder. I never had. This is Kathy I 90.3, FM, Minneapolis and Kathy I dot O R D. Thank you so much for listening. Please enjoy our podcasts. And you may email
[email protected]. If you'd like to be on our email list. Thanks for listening. Good night.
Speaker 0 54:40 <inaudible>.
