Aug 17, 2020
For All Abilities – The Podcast Episode Thirty Four - Isabelle Stahrfisher - Surviving and Thriving with Mitochondrial Myopathy
In this episode, I interview Isabelle Stahrfisher- recent college graduate and graduate school student. On the podcast, Isabelle and I discuss her early years with a serious chronic illness (mitochondrial myopathy), her strengths and interests and her college experience. We also discuss her dreams for future employment.
To connect with Isabelle, please go to her Facebook page (Isabelle Stahrfisher) or e-mail her at i.stahrfisher@tcu.edu.
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Full Transcription from Otter.ai
Betsy Furler 0:05
Welcome to for all abilities, the podcast. This is your host, Betsy Furler. The aim of this podcast is to highlight the amazing things people with ADHD, dyslexia, learning differences and autism are doing to improve our world. Have a listen to for all abilities, the podcast and please subscribe on whatever podcast app you're listening to us on. Hi, everybody, welcome back to for all abilities, the podcast. This podcast is all about talking to people with different types of nerve diversity and other disabilities who are doing great things in this world. And today I have a special guest and her name is Isabel Starr Fisher and I've known about Isabel for almost her whole life. I think her mom and I met when she was three years old. She's around the same age as my son Henry. So I'm really excited that she was willing to be on the podcast today. Welcome, Isabel. Hi.
Isabelle Stahrfisher 1:11
I'm so excited to be here.
Betsy Furler 1:13
Awesome. If you could just introduce yourself and tell my audience a little bit about what you're doing currently.
Isabelle Stahrfisher 1:19
Okay, um, well, I am a recent 2020 graduate, I graduated with my degree in communication and my minor in creative writing. And I have a physical disability, mitochondrial disease. I'm a ambulatory wheelchair user and I have chronic illness and all that extra good stuff. So, in college, I focused a lot of my research in my writing about people with disabilities, and I'm about to start my graduate program with a focus in telling people disability stories. Wow, that's awesome.
Betsy Furler 2:00
Well, I'm so excited you're here. And I would love for you to tell my audience about what you were like as a little girl. I think you were diagnosed fairly young in life. So you may not remember that, but kind of what were you like, what was school like in those early years for you?
Isabelle Stahrfisher 2:17
So when I was little, like you said, I was diagnosed really young, so I really don't remember the pre diagnosis period. But my kind of story is actually kind of weird because I was born really sick, which then helps me get a diagnosis, which then helped my siblings get a diagnosis, and then we all got treatment. We kind of stabilized. So yes, we had to do feeding pumps at night and we had to do some different treatments, but we're very active. I did competitive dance for several years. And we did bowling. We are homeschool to just try to limit interaction with others when it came to getting second stuff, but other than that, we lived pretty normal lives. And all three of us had it. So it didn't really feel any different to me. And so I just remember the first time I went to MBA camp, and that's kind of the first time I really started realizing that, like, yes, my whole family's weird, and this is kind of my normal, but also it's other people's normal. They have slightly different versions. And I remember being seven years old and my parents sitting down at the table at Camp like okay, this is how you say, mitochondrial myopathy, and I'm just struggling through that word. Um, but yeah, that was really the first time I was kind of realized, I guess that other people have disabilities that are similar but also not similar. And we all kind of experience it in different ways. And that was really exciting for me.
Betsy Furler 4:04
Yeah campus so wonderful. Henry loved going to camp as well. He left the camp. And but it is amazing that a seven year old can even like know the word mitochondrial, because most adults don't even know that word.
Isabelle Stahrfisher 4:21
So yeah.
But my mom will talk about it. And I was generally just like decided the three of us also the oldest. So like, I had the responsibility of being the oldest and then I didn't have a lot of energy to do anything else. So we'll talk about stories, especially my sister was always getting into trouble and stuff. And I'm like, Well, where's my trouble stories and my mom's like, you're spending all your energy trying to make sure that your sister didn't kill herself doing something stupid. So, um, but yeah, that was kind of my childhood. And I really took to Reading and things that I could do on my downtime that preserved my energy for other things like dance that I really cared about.
Betsy Furler 5:09
Well, and I think if I remember correctly, you had a lot of hospitalizations when you were super little, but then not so many. When you were probably the ages that you remember.
Isabelle Stahrfisher 5:20
Yeah. I had a few hospitalizations, for surgeries. I remember the surgeries more than I remember being sick. And several ER visits. But I think in my memory, my siblings had more hospital visits for being sick and like being admitted, then I do in my, my memory period. Yeah, I know that several early on.
Betsy Furler 5:45
So then when you once you graduated from high school, and as you said, you were homeschooled. And so when you went off to college, that was really your first time to be in a, I guess organized school in a traditional school environment. I guess I should call it
Isabelle Stahrfisher 6:00
I'm kind of I did co ops. And so I had, I took classes at different places. And they were generally taught by college professors were also parents. So it was kind of like a school system. I went to university model school my senior year, and took a couple math classes. They're so similar. But yeah, college is the first time that I had, like, a strict system, which was really different. And then also being away from my family for the first time was really different. And then I had a whole bunch of health issues that first year that made it really difficult. And so that it's really interesting to me that like that first year, I think of this like the first year, or I'm trying to figure out independence, but it wasn't until I transferred back home because of my health issues, that I started learning what true independence was and that was when I was having to Be more dependent on my family than I ever wanted to be making my own decisions while at home. And I right now, even though my health issues continue to kind of get worse, I feel the most independent that I've ever done. I've got really strict boundaries for the most part with my family when they helped me and like, if I'm in my wheelchair, I need help being pushed like, you can't push in places that I don't want to go. That's not okay. And having those discussions about boundaries is something that I've learned is really important in maintaining my independence.
Betsy Furler 7:37
Yeah, that is that's really important, especially with sibling relationships. That's a really, that's so important. So when did you did you have accommodations when you went off to college? Did they provide accommodations and what kind of accommodations Did you need academically or living accommodation, you know, accommodations to your living question.
Isabelle Stahrfisher 8:01
So I didn't become a wheelchair user until 2017. So my first year, I got accommodations, but they were, I was allowed to use a computer for note taking. I think if I remember correctly, I had professors who wouldn't let me do that.
And then I also was allowed.
extended time, maybe I just know I had a whole list of accommodations. And then several professors who wouldn't give me the accommodations
Unknown Speaker 8:33
as well.
Isabelle Stahrfisher 8:34
Yeah, super frustrating I had, or at least not, it wasn't that they wouldn't give me the accommodations, they just would like, Okay, well, if you're going to use a computer, then you have to sit here and it has to be in the front of the room, or it has to be in the back of the room and it has to do this and you have to do that and I really don't trust you and I really don't trust that you're not going to be doing other things which is really frustrating. As I was trying to get all this stuff figured out so I'm trying to learn when and how I was going to take notes really difficult process and really frustrating because I didn't have the energy to fight them. And I didn't want to fight them I was this freshmen kid was like, I don't know how to fight my professor for accommodations when they're really not inclined to give it to me and the school didn't have the, the system to really fight for me either. So it was just a really frustrating process that I kind of learned how to accommodate for myself. Whenever
Betsy Furler 9:41
that's when it's I think there is often a problem with accommodations is even if a school will say like, here's your list of accommodations frequently, it's too many. You know, like it's a bunch of accommodations that they just kind of generically Give to everyone with the similar disability. And then when professors put all sorts of criteria around your accommodations, it's kind of because it kind of defeats the purpose, you know, because then it makes it actually it's actually a, it impedes your ability to use your accommodations, if you know that they're putting all this stipulation around there. So that's something I worry about both in education and in the workforce, you know, in an employment setting, and when someone has accommodations, so would you I know you then transferred, so when you transferred back home, how was that different?
Isabelle Stahrfisher 10:37
Um, well, it was different in a couple different ways. When I transferred back home, I actually ended up going to the school that my mom works at, and that kind of gave me the ability like if I was able to drive that my mom is able to drive me to school, but for the accommodation system, I really didn't have much luck. And the accommodations at my new school even though it was bigger and should have had more resources to help me, which actually has been a big conversation at the university recently about how poorly their accommodations go. And I had a lot of issues with my pediatric nurse who was in charge of getting all of the paperwork for the accommodations to my new school that she had sent to my previous school. And she would, she kept refusing to send it and it was really frustrating. And then the schools like, well, if you don't have paperwork, then I'm not really sure that you have to have these accommodations. And then when I became a wheelchair user, I was invited to go to a women's leadership retreat and when I signed up for the Women's Leadership Retreat, I literally had just gotten my wheelchair so I was like, He is a wheelchair user, I really want to go to this, just so you know, I'm a wheelchair user, so please, but you know, this retreats going to be accessible or not because I can't be on certain types of ground because my smart drive won't work on that. And I got an email from the accommodations department's just chewing me out for not saying that I have a wheelchair and I'm like, but I don't live on campus. And all the classrooms should be accessible. So what's the problem? I was so upset. So after that, I just kind of stopped talking to them. I was like, I'm just gonna deal with this one on one with my professors, which luckily I was able to do for the most part, it was just kind of talked to the professors about what I needed, and just kind of had to figure things out myself.
Betsy Furler 12:56
Yeah, that's, I think that's what ends up happening to a lot of People as you know, when it becomes such a so difficult even to get the accommodations, and I know, with my son Henry, who has a similar, you know, kind of a similar story. Mm hmm.
Unknown Speaker 13:14
A lot of his accommodations are
Unknown Speaker 13:18
medical. So it's
Betsy Furler 13:20
your extended time and it's like, oh, he has a seizure. Well, they would give him extra time anyway, right. Sometimes the paperwork doesn't if it's so hard to get it doesn't it's not helping. It's not worth it. What about where have you worked in the past? And what is it been like at work?
Isabelle Stahrfisher 13:37
So I worked a couple different things. I did some student teaching for high school in a drama department, which really wasn't any different. I kind of worked under my mom. So she was able to give me all the accommodations like Oh, do you can't climb the stairs today? Well, everyone's moving outside, and so I didn't have to do that. But my first real job is actually at my university, I worked in the advancement office, which is just kind of looking up who's passed away. So we stopped some sending the mail. And that process was interesting. I remember going to the interview. And this was before I got my wheelchair and I'm just kind of using mobility devices on and off. And I was like, I'm not using a mobility device. I'm not giving them any reason not to hire me. I'm not going to talk about potentially missing work. And I was so thankful that when I got there, I actually found out that my boss has or had an autoimmune disease. I no longer work there, but she had an autoimmune disease. And then her boss actually was a wheelchair user. So when I became a wheelchair user, they were all very and I got my wheelchair. They were Very nice. They were very understanding. I was calling my boss and like, Hey, I'm having a flare up. I just can't make it to work today. And she was really accommodating, which was incredible. It was kind of one of the first times that I had ever experienced that, especially since when I've been doing research. And I've been listening to all of my friends on my Facebook groups, and we're struggling with jobs, not accommodating them or finding other reasons to hire them. And having this job that was just like, okay, you can't come in this week. That's fine.
Thanks for letting me know. And just please take care of yourself. So you can come back when you can. And that was incredible.
Betsy Furler 15:43
Yeah, like a dream come true.
Isabelle Stahrfisher 15:46
Yeah. It was, honestly a terrible job like, paid really poorly. But the people were amazing, which is why I stayed there for so long.
And then I moved over to the Writing Center as a tutor, which was a lot less Understanding was the only disabled person that I knew of there. And it was I was really nervous about ever calling in sick. So I tried to limit that as much as possible on the way I approached, it was very different. I'm like, okay, here's these, you know, when you're constantly sick, you pick trigger words like throwing up, fever, you know, something that makes people not want you there, instead of having a flare up. And it it's a whole different process. And I loved my job there it was, was one of those situations where the work was better, but that experience was a lot harder. And that I'm about to start my like real big kid job as a graduate teaching assistant. I'll be teaching the basic communication course. And we are Supposedly allowed. I'm not sure how this is going to work, but we're supposedly allowed not to attend or not to be face to face for our classes, maybe passively. And that's really, that's giving me more anxiety than anything else this summer is just thinking about what is going to happen at school, when I try to go back in like, what if I can't go back? Because that's really scary. And just because, you know, there's these things that people do. That kind of just puts you in a corner of like, Oh, you can't be in person in class, and they'll treat you different. They say they don't, but you feel it because they'll be short with you or they're like, well, there's no excuse for that behavior. There's no excuse and like, but if I was in class, I couldn't do that. And so I actually a friend of mine, who's also has a disability, who's in the graduate program who texted me And she's like, So technically, we have the right to not come to the face to face class and just zoom in. Do you think that that's going to be okay? And I was like, honestly, I don't think I don't think it's going to be any different than it was before. If you don't show up to class in the face to face, if that's what everyone's doing, then people are going to, professors are not going to understand they're going to be upset because they don't like the accommodations anyway, so, and that depends on professor, but for the most part, especially people who aren't willing to kind of think about their initial reaction. That's pretty much what we face which is really disheartening. But I like to think of it as the idea that, like, I have a friend who also has a disability and the graduate program and we're both intending to go into research. We're both intending to be provided. So that once we can get past this we can then become professors are more understanding.
Betsy Furler 19:05
Yeah, yeah. And chain kind of change the system. Wait, wait, how has the COVID stay at home order affected you?
Isabelle Stahrfisher 19:14
Um, at first I was kind of laughing at it because I'm like, oh I don't go anywhere anyway because I just too tired to go out or and you know, I'm chronically ill introvert I don't need to go out in the world but it's I go back and forth on like how I personally reacting. I've helped more issues with how the world is reacting especially since I live in DFW and Dallas is gotten really bad and I've got all these people on Facebook who are just basically saying people who died from COVID are pretty much going to die if they got a cold anyway so they don't really matter. And I'm like, I've had friends and family pass away from The virus and it's real scary thing. I have friends. It's actually just talking to them yesterday about when are we going to choose to go to the ER or not? Because I'm like, is this pain? It's unimaginable pain, but is it worth putting ourselves at risk? To COVID? Because the pain might be really bad, but is it life threatening enough to outweigh the chance of getting COVID and subjecting our families to that, especially since several of us have siblings who also have the virus? We live with elderly people?
Betsy Furler 20:39
Yeah, we have the same conundrum with Henry to where we are. We don't know. You know, it's like How bad is it have to get like just like you were saying it's, it's a hard that's a really hard thing. And I feel the same way where I, you know, hear people saying, Oh, I'm not gonna wear a mask because it doesn't do anything for me and it's like, but it does something for others. People in the world. And this has really shown I think everyone's true colors. What they're really like what you know, and what they really care about. And it's been a little disheartening at times.
Isabelle Stahrfisher 21:15
Yeah, well, and it's, I keep thinking like keeps me going is honestly the thought that I'm a part of something called the disability issues committee or I can't remember the last word. Anyway, it's part of the national Communication Association Conference. And there's a whole bunch of researchers who either have disabilities who are doing research about disability studies or are doing research for one reason or another. Most everybody has a disability and that's why they do it. And I just keep thinking, there's going to be a lot of essays, there's going to be a lot of research that is going to come out of this, which we can address the overt ableism in our world. Hopefully that will get some kind of change. But we just have to be able to get to that point.
Betsy Furler 22:08
Yeah, that's I'm so excited that you're doing that. And then your masters and everything, I think it's going to be great. And I think I think the tide is turning and I think this has been a really important time the lat really the last year, but even through COVID it's like I see more progress than I've ever seen before. So I'm glad you're joining the fight for everyone else too. And it's been great having you on the podcast today. I know some of my listeners are going to want to reach out and connect with you How is the best way for them to connect.
Isabelle Stahrfisher 22:42
The best way to connect would probably be through my
facebook or my TCU email, which is just I period star Fisher which is spelled us HR as I sh er@tcu.edu (i.stahrfisher@tcu.edu) I'm always welcome to taking emails from people I love to help. It may just take me a little bit to get back to people. But, and then my email or my Facebook, you can find me just pretty much looking at my last name. It's pretty unique that way.
Betsy Furler 23:19
Awesome. Yeah. And I'll put all that in the show notes. So, thank you again so much for being here. You were a great guest. And I know that a lot of my listeners are gonna gain a lot of knowledge from you.
Isabelle Stahrfisher 23:31
Okay, thank you so much for having me. It was really exciting.
Betsy Furler 23:35
Yeah, and listeners, thank you so much for tuning in, please rate review, subscribe to the podcast on whatever podcast platform you're listening to this on. And if you want to know more about my consulting services, as well as my software that helps provide accommodations for employees with disabilities. You can find that at WWW dot for all abilities calm thanks. So much for listening to the for all abilities podcast. This is Betsy Furler, your host and I really appreciate your time listening to the podcast. And please subscribe on any podcast app that you're listening to us on. If you'd like to know more about what we do in our software that helps employer support their employees with ADHD dyslexia, learning differences in autism, please go to www dot for all abilities calm. You can also follow us on Instagram. And you can follow me on LinkedIn at Betsy Furler f isn't Frank, you are le AR Have a great day and we will see you soon.