Idiopathic Intracranial Hypertension (IIH) with Maddi Albregts

Actor and fellow podcaster, Maddi Albregts speaks about IIH, internal ableism, and living with an invisible disability. Please check out her wonderful podcast BrainFart and add it to your playlist!

Links for Maddi

Episode where Maddi is interviewed by her friend who took her to the hospital her sophomore year. One of my favorite episodes: Here
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Transcript

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Naveh Eldar  0:16  
Welcome to the landscape, a podcast to shed light on the people, programs and businesses that are changing the landscape for individuals with any type of disability. I'm your host Naveh Eldar. Today's guest Maddy was diagnosed with idiopathic intracranial hypertension, or I h during undergrad. Today she is an actress and fellow podcaster, who hosts a great show called brain fart, where she shares about her journey with invisible chronic illnesses, and also conducts interviews where she shares her platform with other advocates. I was listening to NPR and they were talking about research on laughter, testing if you could tell if somebody was laughing in a social setting or with friends, and they played for the audience, clips of people laughing. And every single time it was very clear, when somebody was laughing with a friend. It just had a completely different sound to it. So what does that have to do with today's show? Part of what we talked about today. Maddie has discussed in her podcast episode and she has one particular episode which I referenced, and I'll have a link to it in the description, where she was interviewed by her friend who went through it with her. And when you listen to her speaking to her friend, it is such a different vibe than when she speaks about it with me which she does a great job speaking to it about me. But with her friend, I mean, she's just loose and laughing and cursing, and all of those wonderful things. So I really suggest that people out there, take a listen to maddies podcast, especially that particular episode. Now, if you're new to my podcast, I hope you subscribe, share with friends and leave a review on Apple podcast. today's conversation starts with Maddie talking about growing up in Las Vegas.

Maddi Albregts  2:18  
So I grew up in Vegas, I was born and raised there. My mother was born and raised there. So we kind of have a couple generations that really go back and are from Las Vegas. And I grew up in a wonderful home, I had excellent parents, I had an older brother, who actually had more diseases and more autoimmune diseases. He was diagnosed with celiac disease when he was around five. And then at 13 was diagnosed with Type One Diabetes. So it was kind of a, I guess it was just common knowledge in our family to know about these things, and to do the research and my lovely lovely mother always did the research was always looking things up. And so it was kind of in the peripheral. But obviously that didn't consume every waking day for us. We were still people and living and doing things same with him. But yeah, I grew up and we were really active outside a lot. I mean, the weather's beautiful, it gets hot, very hot. But we spent a lot of time outdoors, we were swimming, we were doing all different sports. I mean, my parents really made an effort to put us into everything. And let us try everything and not kind of force us into a box, which was I mean, wonderful for us. Because I I think I tried every sport, from like tennis and swimming to soccer and basketball and volleyball and jump rope team. And anything that came my way we were, we were doing it. And we would just be carted from one sport to the next. So really active climbing trees getting dirty, it was wonderful. And so that's kind of how I grew up. And then I kind of had a shift from Sports to dance in my middle school years. And that kind of started my transition into the arts. And that's when I started wanting to audition for shows and possibly start singing like I kind of had an ability and my parents were like, that could be something if you want. And I remember taking voice lessons and then hating them and not wanting to do it. And I'm sure it's just that kid thing where you're like I don't want to spend my free time going to some random lady's house and having her judge me for an hour. So I kind of it took a while for me to really get involved in that and decide that was something I might want to do. And I had a cousin who was attending this Performing Arts Magnet School in Vegas. Vegas has these I don't know. I don't know how common they are other places but they Are these magnet schools, their public schools but you have to apply or in my case audition to get into the school and yeah, they only accept so many people. And I ended up getting it. I ended up auditioning and getting in. And so I was like, Okay, I'll, I'll go there. And I'll do theater every day. And so it was part of our we did all Gen Ed's, per usual, but then we just had added arts classes on top of it.

Naveh Eldar  5:25  
So what did you audition with? So we have a poor performing arts school in Nashville, and I'm mistaken, you have to perform in two completely different areas of art. Like you can do a song and then you can like play the drums or something. But I believe you have like your main one, but I think they want to see like if you're versatile. Anyway, what was your your personal audition?

Maddi Albregts  5:46  
Yeah, so we had made they called them majors, which is so silly for high schoolers to have majors. But we did. And so we had theater and dance, and International Studies and band like music, and visual arts. I think we're kind of what rounded us out. And so I just went in for theater. I didn't have to play drums or anything with it. But I went in and I did, they wanted to see, I think it was two monologues. So just these sections from plays that was only me talking and contrasting, so probably like a comedic and a dramatic. And then I had to sing. So I chose just kind of a chunk of a song that I think sounded nice in my voice, and then they also had us perform us section of the poem. Jabberwocky? Jabberwocky, Jabberwocky? Uh huh. Um, and it was like, I can still kind of remember. Like, and we had to do this, like physical stuff with it while saying it. And I think they I think they just really wanted to kind of test our imagination and creativity and willingness to go for it, like all of that stuff that I see now. But at the time, I was like, Okay, I'll, I'll say some words from this poem. And we'll see how it goes. So that was it. So I did that. And then obviously, I sent in, like my transcript and grades, but honestly, they weren't super focused on grades. It was really more of, I guess, your potential in the art.

Naveh Eldar  7:15  
And so that led you like some people go through that process? And then they just go to a regular University. Yeah, take whatever accounting, but you continued on the path to college. So what college? I know you went far for college? What college did you go to? And what did you major in?

Maddi Albregts  7:30  
Yeah, so that is interesting that you say that because it does happen? We had probably only a handful of us actually continue on to performing arts colleges. And some people decided that they wanted to go into more technical stuff, but I decided I wanted to be performing. And so I ended up, I ended up auditioning for like, 18 different colleges. It was, it was, oh, I was so nervous. I've always had kind of this imposter syndrome with performance, never quite feeling like I belong, always feeling like I'm climbing the ladder like I'm not as great as the others. So which I guess is a good quality because you're always practicing, but that led to the 1818 auditions, but I ended up going to Montclair State University in New Jersey for my BFA in musical theater.

Naveh Eldar  8:23  
And so what was that experience? Cuz I have no clue on like, what that life would be like. So a couple episodes ago, I spoke to an opera singer. Yeah, I saw and she went to school, obviously to do to study although it was a liberal arts college, she decided not to go to justice school, what does it call those schools just for music conservatory? Thank you. She decided not to go to just a conservatory but to go to a liberal arts school. But but so what was college like for you as a as a student?

Maddi Albregts  8:51  
Yeah, actually, MSU is just a liberal arts university, but they have a conservatory like program. That's kind of how they advertise it. I, I would definitely say that I'm grateful for my high school experience, because I think it prepared me for such a rigorous college experience. I I feel in my life that I have. I very much feel like I've always been in the right place at the right time, even with illnesses and stuff that came later. But I think that prepared me a lot for college. And so that was the right path to take. Continuing on with theater and stuff. And yeah, it was rigorous. It was pretty difficult. I ended up me being me. I decided I also wanted to do two minors on top of my major. So I minored in business and then later in German. I know I know. How do German plus business equals musical theater? I don't know. But that's

Naveh Eldar  9:56  
Is there a family component to German? Like could you have family from German Why German?

Maddi Albregts  10:02  
Yeah, definitely some family. My grandpa's last name is knits and I Tz which is very German but and he could kind of he could speak like one or two phrases maybe. But I, what I really wanted to do is I wanted to take ASL. That's what I really wanted to take as my language. But it was so full because it's horrible. But people were like, Oh, that's gonna be a really easy class. That's a way easier language, which is not true at all. There's so much to it. And I think they later realized when they were in the class, but because I had always been I had learned a little bit in high school of ASL. And so I really wanted to continue that, but the classes would just fill up too quickly. So I thought, okay, I'll just take German. And I never felt good at language. I took Spanish in high school and was awful at it. I can't roll my Rs. I just was so insecure and nervous about it that I would I couldn't perform in class, I couldn't, they would ask me a question. And my brain would go blank. So I had a lot of nerves around taking a language. But when I got into German, it was fun. And I enjoyed it. And it was something I never experienced before having fun with a language. And so then I really, I was really taking to it and really practicing. I mean, like practicing every chance I could get I would be on the toilet doing flashcards in German just because I wanted to. And because I also had no time. But then I had a teacher who approached me and said, Oh, have you considered maybe mitering? And I hadn't because I was a little bit behind, I would have had to take summer classes, which I did end up taking so I could get the minor. But yeah, a lot of my friends thought Meyer, they asked me why are you doing this? Why are you doing this yourself?

Naveh Eldar  11:53  
Why? Why suffer? And so from a from a talent point of view, how did you feel when you hit the college? Because I imagine everybody who goes to college the first year is a little bit nervous. So how did you stack up?

Maddi Albregts  12:07  
Oh, yeah, I felt like I was right back at the bottom. But I I mean, it's so interesting, when you get into a program that's really, really small. And so it feels almost elite, and you're with the best of the best. And I I would listen to my classmates sing. And it was like angels, they, I mean, all of them beautiful singers. so talented, their dancing, surpassed anything I'd seen up until that point, it felt I felt like a complete fish out of water. And I and I know I made it there for a reason. And I was there for a reason. And I understand that but me at 18 couldn't believe that couldn't right? understand how these people were, how they how they had come to that. That had not status, but level. And so I mean, I just practiced every. Every day. I remember walking to the practice rooms to practice probably piano and voice and music theory all at the same time. And a friend passed me and she was like, Oh my gosh, you're always practicing. You make all of us look bad. And I remember thinking I'm just trying to catch up. I'm just trying to I'm just trying to be at your base level. So I can I hate to say compete, but so I can match up. Yeah.

Naveh Eldar  13:30  
But it is competitive, right? I mean, oh, yeah, there's one roll or there's whatever rolls. And there's only there's a bunch of people that want it. So it is very competitive.

Maddi Albregts  13:39  
Yeah. And as much as I wish that could be different and could have been different. It Yeah, it was a lot for four years, it was a lot of competition. And a lot of, oh, you're not taking extra dance classes when you could be or you're not auditing these classes. It was just, and not people outright. I mean, some people outright saying that, but for the most part, it was, yeah, just fill all of your time with this. And if you're not, then you don't want it enough. Or you won't make it in the real world, which I'm learning now. It's just not the way it is. And not the way that we should be teaching ourselves that but at the time, that's, that's all it was to me. Sure.

Naveh Eldar  14:23  
And I'm sure for 18 and 19 year old. I mean, that's probably what you think like, if I don't practice constantly, I'm gonna fall behind and somebody is gonna pass me and be better than me. So, so your your freshman year is when you started having medical issues. So is that right? It was your freshman year.

Maddi Albregts  14:45  
The, I guess catalyst was freshman year and then sophomore year was when things really started to go downhill. Okay,

Naveh Eldar  14:55  
but walk us walk us through that.

Maddi Albregts  14:57  
Yeah, so freshman year, I'd always had a cup. Issues growing up, whether it be digestion or just energy levels being low. I later found out that it was I had thyroid issues. So I was hypothyroid, which I now am in remission for it, I guess my body felt it needed to correct itself. But then also pcls, which is polycystic ovarian syndrome, and never never quite hit with it so intensely that it felt like a real big problem, but just always on the cusp of being diagnosed with these things. And so I dealt with that a little bit. But without really, really quite knowing and understanding what it was. And so I was still like flying high freshman year and doing really well. And I was a part of a show, and we had to be on roller skates at one point for it. And about two days before we opened, there was a technical mishap and the person who was supposed to I was supposed to roll off stage into the wings into the backstage area. And someone was supposed to catch me because I was being pushed off. And there was the stage was wonky, because it was on track system, which I don't know if that makes any sense. But there was there was a drop off backstage that I needed to be caught before going into that. And so I would have someone off stage ready to catch me. But unfortunately, this performance, there was a technical issue. So they swapped the person catching me and the person catching me didn't know how to catch me. So I ended up just smacking right into them. And the roller skates went out from underneath my legs, and I fell on my butt. And me being me was just crying and out of breath. And I was like, Okay, take them off so I can finish the scene. And I ended up just having a, I was in a lot of pain. I didn't know what was going on. But I thought hey, I have to, I have to continue I have to open the show. And so we did. And two days later after that, I was carrying these giant puppets on this whole metal contraption and I had to be strapped into this whole suit. So I couldn't like move the wheels of this puppet. And during one of the performance is the wheel stuck. And so in my head, I was like oh, I'll just carry the contraption but the contraption was so heavy that it ended up pulling most of the muscles in my back. Mm hmm. And I went and this is on top of the pain I was feeling in my butt. And so I ended up going to the doctor for it and are actually the PT on campus the physical therapist and he was like okay, I we can help the muscles on the back but I'm really worried about your but i think i think you might have hurt your cock sex, which is that little your tailbone basically right. And he encouraged me to go get an X rayed and then I got an X rayed and I had cracked my toxics I had broken it, which there's not much you can do. It's just a lot of standing. But that kind of what we think what my family thinks was the start of my health issues. Because we found out a lot of things later down the line. Obviously, I didn't know this at the time, but I have a ventricle in my brain that's a little a little narrow. It's not much like the rest of my life. It's not enough to be like a cause for issue. It's just right on the cusp. I've always been right on the cusp of things medically. And so no one really thought anything of it. And then a year later, I was about to go to ballet class, I think. And I woke up feeling hung over. And I know people are thinking, Oh, you were in college. Maybe you were hung over. But no, no, it was a Wednesday and I'm a goody two shoes, so I didn't like to drink on the weekdays.

Naveh Eldar  19:01  
Okay,

Maddi Albregts  19:02  
so I knew it couldn't possibly be that. But I was really sensitive to light and sounds were really jarring. And I just had a pounding headache. And I felt like I was moving through mud just the entire day not knowing what was going on. And I ended up going to rehearsal that night. And as I was sitting there, I remember telling them I really don't feel good. I'm not feeling great. And so they let me go home. And as I was about to go home, I started having seizures. And so they called the ambulance. They took me to the hospital. I couldn't remember who I was. I couldn't remember my name. I my friend was telling me who came with me. She was saying how the nurse kept at kept asking for my last name and I was just crying saying I don't know. I don't know what it is. And so my friend having to try to explain and they really, they really thought I was on drugs, though. They are thought that that was what was causing it. So when I got all my paperwork back from that night, it was just test after test for any kind of drug. And obviously all came back negative, right. But they ended up sending me home that night not knowing what it was, I think they thought it was stress, I think they chalked it up to stress. And so I was sent home. And then about a week later, after laying in bed and not doing anything, and not being able to really function at all, I had a teacher actually say, Okay, I'm calling a neurologist, I'm going to take you we're going to go. And I went. And that's when we learned after like a week of testing and blood tests and MRIs and things like that. They, they told me, it's either something psychiatric that we're going to have to call someone in for and I was like, okay, that's, that's one of the options. And then the other was this rare neurological condition that they needed to call in an ophthalmologist for to see if I had pressure on my optic nerve, because they had seen a little something on the scan. And they had to do a lumbar puncture or a spinal tap to see my cerebral spinal fluid pressure. And after that test, and the ophthalmologist, they were able to diagnose me with idiopathic intracranial hypertension, or it's also called pseudotumor, cerebri. But they're kind of moving away from that term. And we kind of think, because the thing is with iih, it, there's no, there's no real explanation to why it comes on. They have a theory that it's seen in women over 40, who are obese. And I am none of those things I was I was 19 and not obese. And it was also could have been caused by a birth control, like a birth control side effect. But I've never been on birth control. So none of nothing pointed to that area. And so I think we came to the conclusion that it could possibly be a combination of the ventricle in my brain, compounded with the fact that I broke my toxics and my spinal cuz your spinal fluid moves up and down your spine and kind of like, circular motion. And so we think that maybe when I broke my butt, it just kind of started pouring into my pouring into my brain. Oh, did I describe what I chose? It's

Naveh Eldar  22:32  
no, like the symptoms you have? You had? Yeah, or what it actually is? No, go go and

Maddi Albregts  22:39  
see I talk about it. And I just expect everyone to know what this rare neurological condition is. I would

Naveh Eldar  22:45  
have brought you there eventually.

Maddi Albregts  22:47  
You're the you're the professional. No, it's a it's a buildup of cerebral spinal fluid in your brain, essentially. So you have it in there to cushion your brain and in your skull, but mine had too much. So it started pressing on my optic nerves, which was causing loss of vision. And it was pressing on everything which was causing a lot of pain.

Naveh Eldar  23:14  
And let me ask you that first night Did you did you said you went to the hospital and your friend came with you? Yeah. Was that the night? Did you ended up going home and an Uber? You don't have to tell that whole? Is that the night you went home and Uber? Yes. So the reason I'm mentioning that is because you so for my listeners, Maddie has her you know her podcast, which is called brain fart. Awesome name. Thank you. And, and you, you had an episode with your friend to talk about that night. It was a really, really good episode and upsetting. Many, many moments of it. It makes you not super happy with some of the people in the medical profession. Yeah, but anyway, I encourage people to go and listen to to that episode and other episodes because we're condensing things here. But your podcast you have several episodes kind of taking people through this this time period. Yeah, really? Yeah. So. Okay, so so go ahead. And so now you, they've diagnosed you, right? And so what does that mean? What, how does how does that impact you?

Maddi Albregts  24:17  
Yeah, so they immediately put me on diuretics to try and lessen the fluid in my brain and also the rest of my body. And so I went on one that was actually an anti seizure medication called topamax and I had really, really horrible reactions to it, like even worse, I can't even quite remember what they are. I've noticed that my body does this thing that if I have really intense trauma, or pain, it just kind of forgets about it. Right? And so I'll have these things called brain episodes that we can talk about later. But usually the next day I wake up and I don't quite know what happened. And so if anyone was with me, they have to kind of fill me in. But then That kind of happened with this first experience, I just remember my mom because my mom ended up flying out. We talked about how I'm from Las Vegas. And so there was a point where my teacher called my mom and she was like, I think you really need to come out. It's, it's looking like it's not going to be an okay thing, and that it might affect her. So my mom ended up coming out. And so we were staying together at my aunt's and uncle's house at an uncle's house. And I just apparently had woken up in the middle of the night, like, needing to puke and just like not being able to really move and just my head was feeling worse. And so we went back, and they switched me to diamox, which is another diuretic. And I was on that for a pretty sizable, and I mean, not super long, but definitely a couple, definitely four months, maybe a year. But with that as well, I started getting react like bad reactions where my extremities would go numb. And I that's, that's always the one I can remember. But I can't always remember what the other symptoms were. But honestly, just the fact that my hands and feet were going numb wasn't a great, not a great thing. And I think it also I was having a lot of brain fog and still having really bad headaches. I mean, headaches constantly. And yeah, memory issues. That's kind of what happened afterwards, I think was I noticed, my memory was not there anymore. I had lost a lot of my memories, I lost a lot of my ability to remember. I Yeah, I remember being in a singing lesson. And trying to read the sheet music and not being able to read the sheet music, and just crying. And my teacher and the pianist, were just tell, it was like a child like they were they were like, Okay, look at the paper. And when the note is higher on the page, it's higher in your voice. And when it's lower on the page, it's lower in your voice. And I just remember crying because I knew that I knew, but I couldn't find where the information was in my brain anymore. It felt like somebody had come into my brain and just destroyed the place and destroyed. Every like knocked over the filing cabinets kicked around things threw water on important memories and right, it just felt completely lost. And so I think that that's the main thing I remember after after being diagnosed was just feeling lost and feeling like my body was not my body anymore.

Naveh Eldar  27:47  
You know, listening to your episode, there's a few occasions where I was personally, I don't know, fascinate is the right word, because it almost feels like something positive with the word fascinated. But I was fascinated. You had a few instances where you were completely out of yourself, right? Like you, your friend described you as being like a zombie like not even suffering just like staring, right? Yeah. And like you said, like you didn't even know your name. And, and that one of the occasions was you were trying to get in, they were trying to get you into an ambulance. And you were like not having it. You're like, I'm not No, I'm not getting going anywhere. And you said well, what if they asked you what if a friend came with you? And so you were like, yes, if my friend comes with me, I go, but just you still have the ability to know that. You didn't know your name, but you knew that that's my friend and she'll keep me safe. Yeah, right. And then the other situation was when your mom came, and if you'll you'll you can tell like what did you What did you think or feel when your mom walked into the room?

Maddi Albregts  28:49  
Yeah, I just I love my mom. She's just the most wonderful lady. I can't say it enough. And I will never say it enough.

Naveh Eldar  28:56  
So again, to paint the picture. You're a college student 1000s of miles from home. Yeah, in a hospital, basically only being supported by some credit, some college friends

Maddi Albregts  29:09  
who had really only known me like a year and a half and who were also like 18 and 19. Sach is so wild. And I had teachers there and I actually had an aunt and uncle who lived close enough that they could drive to me so luckily there was like some sort of support. But I just, I mean, I felt so lost. I'm hooked up to all these wires I've Yeah, I didn't know what to do. And then I remember knowing that my mom was coming and I remember hearing down the hall like the clack of her heels on the ground because of course my mom dressed beautifully in full makeup and hair to come to the gym to Come on, go on the airplane for six hours and come to the hospital. And she had her rolling bag with her because she loves literally had come from the airport to the hospital. So I hear just like this, just this brisk clicking of heels with a rolling bag behind it and she just burst into the room like beautiful sweeping in through her bag to the side and just came over and hugged me. And I remember just sobbing, just crying because I felt so good. And she just was like, I'm here. I'm here. And there's this hilarious photo of me in the hospital with her and her looking like beautifully made up and me in like the hospital gown with the wires connected to my head looking gone. And right. But yeah, I love I love that story. Because it was so Stacy have her

Naveh Eldar  30:46  
do that. So I I have never met her stories about her. But I imagine that she's always dressed nicely. Always. Always Always. Which is just a very, is very stark contrast to me. Like I don't think you'd look at me and think oh, yeah, that's Stacy's daughter because I am very much i don't know i mean hair and makeup never when you have to do it for a living and like put it on you all the time. I just don't really care to do it. Otherwise I would call myself earthy to her. Fabulous. And and on your, on your show. Where you are freer. You're a little you're a little reserved, because you're like trying to be polite for my my snooty audience Oh, yeah. But on your show you describe it and much funnier terms, the contrast between you and your mom. So yeah, people, people just need to listen. This is really good. But and I want to see this picture, by the way. Oh, yeah. To see it. So you need to send it to get to me. Yeah, you might have to remind me because the brain thing you know. And so yeah, so let's talk about that. So your your day to day now. So you're on medication, you're getting different treatments. And so how much is it managed? How much does it impact your daily life at this point?

Maddi Albregts  32:06  
Yeah, so now I've done a lot of different treatments for it, just knowing that I couldn't deal with it with the medication they were giving me and if I couldn't deal with it that way, then I was gonna have to have brain surgery. And I just don't particularly feel inclined to have researcher. I mean, if that's if that's what it comes to, that's what it comes to. But at the point, I can kind of manage it enough that it doesn't seem super necessary. But that's kind of that's another part of it. It's just day to day not knowing that if one day I will need brain surgery, or if one day I could possibly go blind to because it's pressing on your optic nerves. And so those kind of questions float around every once in a while I try, I don't really think on them too much. But that is always kind of at the back of the mind. So making sure that knowing how I feel now and knowing that if something really changes or shifts, but day to day, I, I want to say that it's like great, and I have it figured out. But that's definitely not the truth. And that's just kind of the truth with chronic illness is that it's constant, it's constant. And sometimes I go through really good periods. And sometimes I don't. And it just kind of depends, I think every day I probably have a headache. It just it kind of differs depending on the the day, I suppose sometimes it's really bad. And it feels like I can't do anything. And there's some days where it's just kind of a whisper of a headache that I definitely feel like I can deal with. I think the frustrating part. The Daily frustrating part is when I lose my train of thought. Or when I like forget things really easily. I feel like I'm doing pretty well on the podcast so far. But there might be a point where I will forget what I'm saying in the middle of me speaking, which happens a lot. Or I just forget what we were talking about or what I did the day before. And my friends and family and my partner, they've gotten really good at trying to figure out what I was trying to say or really good at just reminding me what we were talking about. So I'll kind of like stare off and not really know. And I'll begin to say that I don't know where we are and they'll be like, Oh, we were talking about this, this, this and this. You were talking about this. And sometimes it comes back and sometimes it's just gone off. Right gone away. But I think that's the daily frustration for me more than the pain.

Naveh Eldar  34:48  
And do you ever have seizure type symptoms anymore?

Maddi Albregts  34:51  
Um, so with the seizures, they were I don't even it's weird to call them seizures because they were like, these aren't seizures. They're not we It doesn't present in your brain, but they look like seizures. And I think we call me and my partner have just coined a lot of terms, we've, we have our own vocabulary for our health stuff now because it's just easier to talk that way. We kind of call them like tension attacks almost. Because it like my body will tense in certain ways that like, makes it look like it's convulsing. And I mean, yeah, those still happened the other night. I had one. Not last night, but the night before. I had a really, I don't know, I think I threw my head back in a certain way while talking with my roommates. And then all of a sudden, I was like, Oh, I I feel off. I don't, something feels wrong. And so, Martin, my partner was like, Okay, let's, let's get to the bedroom. Let's just lay you down and figure it out. And then I started having those little convulsion things, and I don't know if it's a nerve thing or a muscle thing. We honestly don't really have an answer for it. But then the nerves, I guess, down, my arms started, like, stopped working, and I couldn't move my arms for the rest of the night. While I was just laying there. And I don't sometimes I wonder if it's a psychological thing, or if it is a physical thing. I

Naveh Eldar  36:17  
I feel like that's okay. So I'm gonna step in here. Yeah. So I know that, again, through listening to several of your episodes that you had doctors and nurses sometimes that weren't always right, like, oh, nothing's wrong with you. She just did some drugs, or I know, I believe there was one that told you, you just need to eat something. Oh, yeah. Before you were diagnosed, right, just just have a sandwich and fix you right up. So I feel like that that's what's talking to you right now. Yeah. So. So I just have a weird question. So do you drive? Or do you feel like is it at a point where you, you shouldn't drive? I don't want to scare your mommy.

Maddi Albregts  36:55  
Oh, no, no. I drive. So I still drive, I can usually feel like that moment of Oh, something doesn't feel right. I can usually feel when that's coming on, like a moment. And if it does happen, I think it would give me enough time to be able to pull over and call Martin and say something's happening. And we share our location with each other, which I think some people are like, Oh, you, you trust them enough. And I'm like, Yeah, of course. And especially in this situation, if something were to go wrong, or if I'm not responding, we can just kind of see where each other is at. Honestly, I work from home. So I'm a freelancer. When I act, it's usually to go because I live in New Jersey now. So it's to go into the city and I take the train. So a lot of the time I'm not driving a lot of the time to be honest. Gotcha. Um, which is why, which is why I decided to do freelance work on top of acting work, because it was easier. And I mean, I have moments all the time where I think, am I Well, as you said, kind of this am I making it up? Is this fake all of that. And luckily, I have great people in my life where like, know what you're feeling is valid. And that's what I try and say on my podcast as a reminder to myself, but as a reminder to listeners, is that what we're feeling is valid. And I think

Unknown Speaker  38:21  
there she goes.

Maddi Albregts  38:23  
I have to, I have to think about what we were just talking about. Yeah. So I mean, yeah, I I freelance to give myself space, I, I always worry. I always worry that I am not working hard enough, or I don't have enough stamina to work. And Martin, my partner is constantly like, it's the chronic illness, you're tired because of the chronic illness. It's not like you're, you're a lazy person or whatever. But we're also trying to get kind of lazy out of our vocabulary. And because I have I have a real issue with not doing work. And I think it goes back to high school and college and constantly working and doing stuff. And I recently got my master's degree. And I when I graduated, I felt like I had nothing to do. I all of a sudden my schedule opened up and it felt like what what am I going to do now and a lot of the people in my life were like, rest, rest, you haven't rested since you were diagnosed, like take some time to take a break and take care of yourself. But there's something in my mind that's like, if I'm taking a break, then I'm not being productive, even though rest is absolutely productive. So that that is why I have I stay at home most days and try to relax but most of the time I'm just taking on more and more projects because

Naveh Eldar  39:53  
that's we had a little back and forth about that. Actually, I don't know if you remember but you oppose the question. Is is laziness real? I believe your construct the societal construct? And I was like, yeah, it's real. And you're like, well, well explain that to me. Why do you think that is real? We had a little back and forth about it. Yeah, I remember. So what's difficult for you? When you look at yourself in the mirror? You look absolutely like everybody else, right? It's not like you're a wheelchair user. It's not like you're, you know, have a limb difference. And so it's this, this is hard, right. But we know that most people that have a disability have an invisible disability. Yeah. So it's interesting, because there seems to be this level of self stigma around it. Like, at Do I really? Am I lazy? Or do I really have fatigue? Yes. Right. And but but also, how do other people treat you because they look at you and think that there's nothing wrong with you? How do you deal with that?

Maddi Albregts  40:59  
Yeah, I mean, it's, it's still hard to this day, it was really hard in the beginning, when I didn't quite know how to how to deal with it. Um, I remember being at school, and it was just this feeling that people and who knows, maybe I'm projecting this onto others, but this feeling of Oh, is she really sick? Oh, she's always sick. Oh, she she always has something. There's always something with her. I mean, I had a family member who I was talking to that I think I was taking medication. And they were saying, Oh, well, your thing isn't really, it's not it's not really that big of a big of a deal. I mean, look at your brother, look what your brother has to deal with. I that is so so intense. And you're it's just isn't like that. And I remember thinking I remember feeling so bad. I cried about it. I was like, What do you him? I just blowing this out of proportion. Do I just want pity? Do I want comfort? Do I need that? Instead of realizing that he just had no idea what I was going through? Because it wasn't shown on my body? or? Yeah, so I mean, I still struggle with it. Hearing people talk about it that way, or knowing that when I go out, or when I have issues talking or when I forget things, people aren't going to immediately think Oh, that must be her rare neurological condition there. I just Yeah, they're just thinking, Oh, why is she forgetting her words? Why can't she remember? Why is she twitching in the corner? What is what is happening there? And so I, I mean, that's why I'm so passionate about talking about it, because for a long time, I felt it was that imposter syndrome of am I even disabled? Can I even consider myself a part of this community? Because Am I quote unquote, disabled enough? Instead of just recognizing that what I was going through, was valid. And I think that's, that's why I'm so passionate with talking about it, because I think there was so much more. I sorry, I just had this thought this, I just remembered something where my cousin's wife became pretty ill after giving birth to her child. And everyone in my family was like, Oh, she's just not doing well. She's just like, really tired and sick. She's just not handling it. Well, and I remember thinking, Okay, I wonder why that is. And then I later talked to her, and she had been diagnosed with Ehlers danlos Syndrome. And nobody thought to, to say that and to source that as her reason for, like pain and discomfort and tiredness. And I remember thinking in that moment, I was like, Oh, that's, that's why I do this. So people can recognize these diseases. And when they're spoken about, they have some weight to them that it's not just like, oh, that those are a bunch of words I don't understand. And so if I don't see it, then you must be fine. It can't be that bad. And so I remember thinking, Oh my gosh, she's going through so much, and all people chalk it up to is Oh, she's just really tired. I was like, Ah, that frustrates me so much. Hearing that and knowing that like she had to go through that and go through having to try to explain and try to validate what she was going through to people that didn't even care to to understand the kind of a sidetrack story but it just fueling the fire.

Naveh Eldar  44:53  
So here's the thing. Here's why that story was meant to be because I didn't know if I wanted to mention this. You were but All connects. So you're talking about eds. I had a, I had a previous guest who had eds. And she eventually had to use a wheelchair, right? Because it's something that over time, you know, she became more and more stretchy as she says. But she can stand right. And so she was like at a grocery store using her wheelchair and she stood up to get something and you know, somebody made some snide remark like she was faking. And it made her spin into this. Do I need? Am I not working hard enough? So I don't have to use this wheelchair. Or you see, I'm saying yeah, this complete stranger who knows nothing about you? puts you in this spin of self doubt. And, and you know, judging yourself. And so it's just, it's hard when you have to fight. You know, even like, listening to your past episodes, you have to fight medical professionals, strangers, family, and then eventually you end up fighting yourself. Yeah. On how valid you're feeling if it's if it's correct or not. Yeah, so anyway, how much how many challenges have you had with the medical profession in particular?

Maddi Albregts  46:16  
A lot? Um, yeah, yeah, I, I have, it's been a difficult journey with the medical profession. And I, I hate to like, just because I know, it's a lot of work. And people study for years and years and years to be doctors and all of that stuff. But I come back to the thought that not everyone can be an expert in every area of the body and of medicine. And honestly, a lot of the times I have gone to the ER, I don't really go to the ER anymore. Even when I have like a bad brain episode. I apparently, in my bad brain episodes, I tell people don't call an ambulance, don't take me to the ER, because I guess in the recesses of my brain that there's this, this plot of Oh, I can't go there, because they're not going to know what to do. Because they, they can't, they can't really do anything for it. The amount of times I've gone into an ER, and had doctors asked me what I H is, or I had a doctor come back and say, Okay, I just looked up what i H is, and I was like, okay, that does not strike confidence in my heart. Right? Or, but then it's always, it's always funny, because when I run into a doctor who knows, or who asks if I have a shunt with brain surgery, or things like that, I'm like, Oh, they they know, they actually know what this is. And I feel like being shocked by that is not not the greatest thing to be feeling when going to the doctor. But yeah, I there's been a lot of a lot of ups and downs with finding help. And I mean, when I was first diagnosed, they were reluctant to diagnose me with it. And even months after when I went to a neuro ophthalmologist, he was like, Hmm, I think they might have missed diagnose you. And of course, I was like, what, then what is it like, what could it possibly be? And so that's kind of how it is when I go to doctors until I find a doctor that I really like. But then the problem is I have moved so much. So I moved from Vegas to New Jersey, and then I was living half in Vegas half in New Jersey during my college experience. And then I lived in London for a year and then now I'm back in New Jersey. So it's been a lot of moving around and a lot of shifting with doctors and things like that. And so I haven't quite found another team that makes me feel comfortable again. And I mean, it's it's really hard going into doctors and having a list of things. I not wrong with you, but a list of things of diagnoses that you just come in, you're like, Okay, this is what I have. Like, of course I've done research on it. I know I'm not an expert, but this is it. And I don't quite know where to go from here. But it's hard retelling everything. Like every traumatic health experience you've had to multiple people. And a lot of the times not having them quite understand or believe or think you're exaggerating. So that it's it's been it's been a roller coaster, with with that. And I I don't know if it'll get better. I think I'll get better at advocating for myself and I think I have gotten better. And I bring people who can advocate for me as well because I kind of get like blank brained when I go into the doctor's where I get, like really nervous with authority. And so I just kind of forget what I want to ask and forget what I want to tell them symptom wise and so I'll write like lists and have people come with me and help me but it definitely gotten better in that aspect. So maybe I'm growing But now we just need the other side to, to grow as well.

Naveh Eldar  50:05  
So how are things going for you today? As far as like acting? And are you managing enough? Do you have to use any kind of accommodations? Do you tell the people you're working for what to expect? So what's happening?

Maddi Albregts  50:18  
Yeah, so part of the freelance stuff I do is I do a lot of voiceover work. And luckily, that's something that I can control. And so I can still be acting, but I can, especially with COVID, I can do it from home. And I have a studio setup and a microphone. I just got a new mic. I'm very excited about it. But yeah, there's so I have some control over that. So I don't really disclose things with that situation, because they're pretty quick and done. In a way it's kind of done on my own time. So I choose that schedule. So that's like a nice, that's a nice way to deal with that. But when it comes to acting and shows which I'm actually in a show now, that will be in New York, like outside performance, it's a production of 12th night, a Shakespeare show. And I think it's a little harder when it comes to I I'm not nervous to disclose, I mean, I am nervous to disclose that information. There is a part of me that's like, oh, what if they find out that I have memory issues, or that I could possibly potentially have brain a brain episode, like the day before, or during a show, which has happened. And so that makes me really nervous. But so far, the people I'm working with are very lovely. They're excellent. I will probably I haven't disclosed it yet, but I probably will end up mentioning it. I, I hate to come in very hot with it. But I also, I also think it's important to tell them because I don't I don't want to. I mean, I don't legally have to tell them. Um, but I, I usually like to just so people know what's going on. Or if I have like little issues here and there. They kind of know why it's happening, as opposed to just thinking, Oh, something's going on there. But yeah, I usually I like to tell them and I remember someone and I had a wonderful classmate in college, in my master's program. I had a day where I was very, very emotional thinking I can't How am I supposed to do this? How does someone with a memory issue and issues physically, that can cause like, episodes on stage? How, how can I be in this profession? How is that even possible? And I remember my friend saying, we're going to make it happen. You will be an actor, whether we have to create our own theatre company with our own shows and our own filming production. Like he was like, you're you're going to act? Right. And I think that was when I realized, oh, if I'm surrounding myself with the right people, and auditioning for the right kinds of shows with people who care and care about the art rather than just the profit, then I think I will be okay. And I think I can go forward with this. And do well and be successful.

Naveh Eldar  53:18  
Right? Yeah. Yeah, that makes me very happy. Yeah, both what your friends said, and the fact that you are working in where you want to work, that passion that you have. So before I get to the personal questions, your podcast, like what is what is your goal? You've talked a little bit about already, we talked about that you needed to get this out, right? You needed to get this educational piece out and, and just talk about it. But But what what else is like your mission of your podcast.

Maddi Albregts  53:46  
Yeah, I mean, I always said that, if this helps anybody, then it's worth it. And if that person that it helps me, then that's worth it. Like, even if the only person that helps is me, by me getting to talk about it and figure it out myself with my listeners, then that that is fine. If it's just me listening. Luckily, I do have people who listen Um, so that's nice. But they, I mean, I had a friend who came up to me and she was going through some stuff and she told me that when I told her that her pain was valid in the beginning of her journey, then that that changed the entire trajectory to getting her diagnosis which she now has an eye because I mean, I go through it where I'm like, is this even worth it? Do people even find this interesting is this am I am I informing people because at the end of the day, I just, I just want to make this a better place and like, bring awareness to people and myself and so it helps me learn a lot to about ableism and about those areas that I was kind of aware of, but not really aware of and like what we have internal like internalized within ourselves, and minorities I mean, it's opened up my worldview, worldview by tenfold. And if I can just offer a glimpse of that a little bit of that to listeners, or even if it's a little bit of solace, or people listen to an episode, now I'm interviewing people so they can kind of, I can kind of open up and expand a bit to other areas, because I can really only talk about so many things, like from a personal point of view. So now opening it up to other people who might have gone through different things. And it's just reaching people and bringing voices to this and bringing awareness so that we can become better as a society and that we can change and we can grow. And it's going to take time, like I don't expect things to shift immediately. And I know we've come a long way. But there's still so much to go and still so much further to travel. So I think that's kind of why Yeah.

Naveh Eldar  55:55  
Hey, I was listening to one of your I think it was like your third episode. And it made me laugh so much. You were like, so if you guys have any questions, you can she's like, in any way. Like, you know what, only my friends Listen to me. So just text me and ask me your questions. Yeah, and I love the thought of like, you know, people listening to your podcast, and like they have your phone number, so they're texting you. Anyway, I thought it was hilarious. So I'm sure you have more listeners than that. Now. That was very early on. So okay. The fun questions. Yes. Because you're an actress. I have some questions around that. If they were to make a movie about you, what actor or actress, would you want to play you in the movie? And it can be anybody in history? It could be a cartoon character for all I care. Who would who would play you in the movie of your life?

Maddi Albregts  56:52  
Um, me? No, let me let me come with a bit creative. Mmm, hmm. Oh, gosh,

Naveh Eldar  57:02  
you're like I need the work.

Maddi Albregts  57:04  
Yeah, that's how I'm like, if they're gonna pay, then it'll be me, baby. I don't know. There's so many. There's so many good actors out there. Let's see, the person who popped into my head isn't an actor. Okay, immediately. It's just my like one of my favorite musicians, David Byrne. Okay, but I feel like he'd do a really interesting job. I feel like it'd be like this really weird, avant garde version of my life through, like, noises and song. Okay, and it would be like on a blank white canvas. with David Byrne playing every character in my life.

Naveh Eldar  57:49  
See, ask an artist a simple question. This is the answer. Any actor? But this is why you do what you do. You created an entirely new scenario. I love it. And so that actually is kind of my it may or may this may be the answer to my second question, which is I actually wanted three people who will be on the soundtrack. Oh, three musicians that will be on the soundtrack in your movie.

Maddi Albregts  58:16  
So David Byrne. Okay, obviously. Who else do I like to listen to? I really like an artist named Laura Marling. She just has beautiful songs that I like to sing. Um, and then Billie Holiday.

Naveh Eldar  58:37  
Oh, wonderful. All right, sing soundtrack but it'd be something it would no be a perfect soundtrack. Look, Maddy. Thank you so so much for coming on. I didn't let you ask me any questions to see how I did that. I totally fine. What like What does? What does ask each other questions? find links to Mattie's podcast brainfart, as well as our Instagram page in the episode description. Make sure to follow the landscape on Facebook, LinkedIn, Instagram and Twitter. The next episode, we speak about guardianship also known as conservatorship, and supported decision making with one of the leading experts in the country, as well as a representative from the Tennessee center for decision making support, which is the first of its kind in the country. It's gonna be a very important episode, and I hope to see everybody then bye

Transcribed by https://otter.ai