Hey, humans. How's it going? Susan Ruth here. Thanks for listening to another episode of Hey, Human podcast. This is episode 435, and my guest is Alex Brito, diagnosed with something called neuromyelitis optica spectrum disorder, otherwise known as NMOSD. It's a rare condition.
It attacks the central nervous system known for giving severe, unpredictable vision loss, chronic pain, paralysis, any number of things for anybody that knows anything about autoimmune disorders, like rheumatoid arthritis or MS, or it could attack a body in a myriad of ways depending on the person. She had a misdiagnosis, vision loss, temporary paralysis. Alex remains a incredibly strong powerhouse of a human. She's passionately committed to helping those with disabilities.
She teaches adaptive technology to people with vision loss, and she maintains an active lifestyle. She's a power lifter, which is badass, and she's the 1st blind woman to earn a yellow belt in Krav Maga. I really enjoyed talking with Alex. I'm excited for you to hear this episode. Check out heyhumanpodcast.com for links and to learn more about my guests and the show. Hey Human Podcast is on YouTube under official Susan Ruth. I'm on patreon at susanruthism.
My TikTok and Instagram is also susanruthism. Check out susanruth.com to learn more about me and my other artistic endeavors, and you can find my music, my albums on Spotify, Apple Music, Amazon Music, wherever you get your music. Rate, review, and subscribe to Hey Human Podcast on Apple Iheart and Spotify podcast places, or wherever you get your podcasts, and thank you for listening. Be well, be kind, be loved, and here we go. Alex Brito, welcome to Hey Human.
Thank you. Thank you for having me. Glad to be here. Absolutely. Welcome. Welcome. Let's jump right in. Tell me where you're from and what shaped you as you were growing up. Oh, I'm from California, the Central Coast, San Luis Obispo County in a little town, called Oceano. I've lived here pretty much all my life. I did move away for 1 year in Missouri. That must have been culture shock. Yeah. Definitely. Definitely. Especially as a teenager, we moved right when
I was a teen. And, I I enjoyed it, but definitely different. And we came back because my niece was born, so first grandbaby in the in the family. Mom wanted to be back, which was okay. I have 2 brothers and one sister, and we've just grown up close all our all our lives. I have my mom and dad still in the picture with me. They've raised us, you know, to be just education, sports. So our sports of choice, was baseball and softball. Did you play in high school?
No. I didn't get to, because by that point, I was, you know, dealing with the effects of NMO. So but I did do color guard. I was the 1st legally blind student to do color guard for the high school, which is really cool. That is really cool. Did your vision go all the way right away, or was it a slow progression? It was a slow progression. So it started when I was 12. My journey with my vision loss and NMO actually started at 12, back in 97. And it I just lost it gradually by 2,003.
How does one come to terms with something like that at the very beginning? And I understand you were misdiagnosed at first. Yeah. So it started when I was 12, and, you know, that's when NMO wasn't a thing. It was, I believe, being researched at the time, but not an actual disease that's been declared, that I know of. You know what? 12, that was hard. That was that was hard to wake up one day with, no vision in one eye and just not know what's going on.
They initially thought it was a virus where I was treated with some, you know, medications to hopefully help bring the vision back, which didn't do anything. And then again a few months later, I had another attack on my body, which were different symptoms, meaning, you know, it it affected this time, it was pain in my neck, and I felt sunburned and tremors.
And that's where I finally got, I guess, what we thought was the answer to my problems because I did a, you know, scan, and and it showed some scarring in my spinal cord and optic nerves, and that's where I was diagnosed with, multiple sclerosis. I really didn't understand what it was, but I knew it was something serious because I knew my mom just how she reacted, you know, crying.
But we just went ahead and did whatever treatment plans we needed at that time for me to hopefully get better, which they didn't seem to help, because I did have an attack, which, you know, on my body every 3 months. So it was something different every time. It was, you know, more vision loss or paralysis. And by the time 2,003 came around, I was completely blind and, paraplegic.
When you are one of 4 children in a household that's especially close as you say yours was, how I mean, I can't even begin to imagine that for a young child anyway. But then the focus of the household has to turn to you for all importance because of the extra support you would need and both physically and mentally. What did everybody come together? Did it cause issues in the family unit? So that's that's, you know, really good question. It
it was a lot. It was a lot to take on as far as being, you know, this teenager, wondering why me. And then me feeling, you know, that jealousy, I guess that's the worst I could say now of they get to do everything still. And I'm limited, but I'm I'm still trying to do as much as I can because they never put pity on me. They never showed pity on me. I could say that. And my siblings helped, and they never were like, well, that's not fair. I can't. Why do I have to? They never never did that.
I'd always felt bad. I guess, at the point when I was paralyzed. I think that's where it really affected me the most, because, you know, they had to help me change my depends or empty out my commode. And they really had to grow up fast. And sorry. I didn't realize that was gonna affect me. It's a big deal. Yeah. But I'm just so thankful that I had and still have the love and support from them. They don't, you know, ever make me feel any different. They're just like, okay.
You know? Well, what do you need, sis? Or and they'll, you know, especially my sister. My sister and I are very, very close. If I, you know, get tired, she's like, well, I told you. You know, you should've ordered this. Or you know? But she's always looking out, and I'm just really thankful that they, again, really never treated me different and encouraged me to grow up as regular as I could be, and my parents too. They never cried in front of me to show that they were hurting. No one
ever did. Did they allow for you to have all your feelings, all your the big feelings that would come with this? Or did they say suck it up, you know? They did, but they did that too, but in in in an encouraging way. Because, I and I believe, and I know it's because they didn't want me to fall in that that Yeah. My life is over. Because I remember when I was 13 going to a support group for MS. And the ladies, you know, it was a
women's group. They were all in their fifties, older, but it was it was that, why me? This is my poor my poor life. And it it really traumatized me. So my mom's like, we're not going back. You know? Because that's not what she wanted for me in in a bad way, but it was, like, that's what she didn't want me to think life was gonna be like. Right. And so, it was just, you know, never give up. We just gotta keep moving and do what we have to and hopefully get things get better.
When the right diagnosis finally was given to you, that must have been one heck of a relief on one point. I mean, that's a weird thing to say about any kind of rare disease. But is this a a mutation on a gene? Is this just by chance that one day you're walking along and some virus hits and then your body reacts to it? Can you explain a little bit about it? So NMO, neuromyelitis optica spectrum just disorders, NMOSD. I always forget to put that SD in
there. You know, it's a disease attacking my immune system, and it affects the optic nerves and spinal cord. And that's the simplest way I can describe it. You know? And it can affect everyone differently. Not everyone gets the same attacks on their body. And some people may just have one relapse, and some people, it can just continue affecting them.
And that's why there's so many treatments on there out there that in hopes that, you know, one treatment may not work for me, it may work for someone else in slowing down the progression of the disease. That makes it quite complicated, I suppose, the the fact that it does manifest in so many different ways because how do you how do you treat something unilaterally that doesn't have a favorite pathway? Right. Right. Yeah. What do you feel about the word disability? I know that some people
really don't like that. They say differently abled. Some people are fine with disability. What does that word what does it feel like to you? I guess I'm fine with it. I've never been asked, you know, it's it's a disability. It's it's just a word, I guess you'd say. I don't I've never thought of it any differently. Yeah. And you're completely blind? Yes. I'm completely blind. And so, when I was re diagnosed, I mentioned I was completely blind and paraplegic, and that's when I was put in a
new treatment plan. And that new treatment actually had me walking within the year. Wow. Yeah. So I'm walking, and I did have a little flare up in 2020, which affected my legs again. But I'm still walking still walking. I did, you know, some more treatments, and I do have a little bit of a side effect, my little drag on my leg, but I'm still moving around, which I'm thankful.
And my mom keeps telling me this. She goes, I always think it's weird, well, not think it weird, but to see the doctor's reactions when I would be asked, if you could get one thing back, your vision or your legs, what would you want? My legs. And she she says they already saw that reaction like, You know, because I'm thankful. I'm very thankful that I've been able to see up until I was 18. I am very thankful for that so that I know what colors are. I know what my family looks like.
But walking, that was a hard one. That was to have that taken from being able to move and play sports. And just to have that autonomy, probably, of being able to move around. Yeah. Sure. So I read an article a while back now, neuroscientists that had worked on a receptor that I believe it was brain implanted and then the receptor came out and sat on the tongue.
And it acts in a way sort of the way the optic nerve would act and that it allows for images to be, received by the brain for what is the surroundings are. It's really fascinating. Have you read about Yeah. I have. You you probably read braille. Yes? Slowly. Before I was reading pretty fast, and then I lost some sensation there. But, yeah, I can read it very slow. I actually use screen reading programs. Oh, great. Mhmm. So, yeah. Sure. That makes sense. Yeah. So, but, yeah,
I did read that. And it was very interesting. There was also, I think, an implant, like, a camera that would come out, like, the side of your head or something. And there's just it's amazing on what they're trying to do. And within your lifetime, within my lifetime, there may be even though you say as long as you can walk, you're fine, but there, you know, there may be advances such that you will be able to see again. Yeah. Yeah. Does that feel like false hope, or is
that something you look forward to? I look forward to it, and it's one of those things I've always said. It's, you know, my miracle was to come to get my vision, but someone else needed it, that miracle first. By all means, I'll go back to the end of the line. Because I'm I'm I'm content, and I know some people may think that's kinda weird to hear, but I am. I'm very content with my life.
I don't get me wrong. There are moments where it's like, oh, I wish I could just open up a book and read the page you know, see and read the pages or really know what my family looks like now because I just get my AI generated screen, picture describers now that tell me what pictures look like. Well, I am sort of tan and flushed cheeks. I have black hair with fringy bangs, and I'm wearing a gray sweatshirt and a pink t shirt. And I have big kinda big teeth.
Thank you for the description. I really appreciate that. And I love that more people are doing that, just that little description, because it just helps. It's just that, okay, and you get a general idea. Mhmm. When you dream, are your dreams quite vivid? I see I can see in my dreams, but I know in my dreams I'm blind. Oh, that's an interesting twist. Yeah. It's so weird because I know I'm I'm blind in my dream, but I can see in my dreams. Do you have a deep faith? Do you
believe do you believe in God? Is spirituality a part of your life? Or do you do you have those kind of conversations? Were you ever mad if you do believe in God? Were you ever mad at God? No. I was never mad at God, and I did grow up, you know, but I do believe in God, and I was raised Catholic, and I mean, I don't attend church, but I do believe and I do pray. I was just never mad. It was just that why me kind of just always asked that. I just knew there was a a reason,
and I've heard that from people. There's a reason why this happened to you. But, I guess just my reason now, I believe, is just to keep living my life and showing people that no matter, you know, my situation, I'm just gonna keep pushing forward. Yes. Do you want children someday? And if so, is this a genetic component that concerns you? Oh, you're gonna be crying again. So I've been trying. I've always wanted children, but my husband and I have had no luck. And, we don't know.
I I don't know if it's animal related or just fertility issues in both of us. You know, unfortunately, we can't afford, those type of treatments, but Sure. I would have loved to. I'm gonna be turning 40 this year. Still young. Yeah. And so I know it's one of those, and then my clock is ticking, but, I would love to have children. And my sister did, offer herself just to be our surrogate when we're ready. So we're ready, but it's just one of those looking. Yeah. Now how to make it happen. Yeah.
Absolutely. How'd you meet your husband? Actually, we met on a a party line. So, I don't know if you ever heard those, like like, a dating map, but you just call in a number and talk to people. And, yeah, I know it was just one of those. I was getting ready to go take some exams. I was in community college by then, and he happened to be on there. And we connected, sent a couple of messages, and been together 16 years. Oh, wow. What's the secret? Well, we took actually a whole year to
meet. We only lived about 20 minutes apart, but we talked every day, and it's really been a journey. There's been moments where it's not perfect, and it's still a work in progress till That's every relationship. Yeah. Yeah. I'd be concerned if anyone ever said their relationship was perfect, that I know. They weren't actually living in a real relationship. So but it's just he's been great. He's, you know, he's when I told him I was blind, he's, like, okay.
And he knows all my issues that I have, you know, whether they're embarrassing that I thought were embarrassing, but he's always he's never made me feel ashamed of, you know, incontinence issues or feeling that, you know, I'm hurting today. He's he's been supportive in that way. Yeah. What's something that you wish people knew about what it's like to be blind? And to be in a a place of disability, even just in anything. Being blind, it's being blind. Let's see. Not
not so scary. It's not as bad as it was when I first started. And I say that because the the advancement in technology is amazing. I actually teach the blind how to use assistive technology. So, you know, screen readers and being able to use, you know, an iPhone with a screen reader and be on social media, it's it's so much more advanced today than it was when I was when I first started my vision loss journey because there was really nothing. There was barely
the Internet. You know? Yeah. I don't think the world is very receptive sometimes to people with disabilities, if not a lot of times. And it's just not a world set up to accommodate people that are anything other than whatever the quote norm is. Even though we all are eventually probably, if we live long enough, we'll face a disability, it's it's something that seems to be mostly ignored for the most part.
Yeah. That is true. There is still a lot of work in progress, you know, like you said, accommodating for people with disabilities out there. But just, you know, if there's an issue, bring it up, you know, Talk to people and just be mindful that a person with a disability isn't someone to be pitied on, but just someone to reach out to and and see if, you know, what they can do to make things better is a big help.
A very, very big, big help. You know, as simple as offering a menu in braille or holding a door open for someone that might be struggling a little if they need it. But don't one thing is don't go up and grab a person. I've had someone try to grab my arm before. Oh, let me let me take you across the street. And I appreciate that, but, you know, in that moment, I'm counting my steps. I'm listening to my surroundings to know when to cross the street, and that could be a dangerous situation as well.
Also, super vulnerable place to have just somebody come and grab at you even if they have good intentions. Yeah. You don't know that. You can't read someone's face or body language. Yeah. And I've had some training in martial arts, so I've had that learning to, like, know those when someone's grabbing you. Okay. Don't react in in a in a self defense mode. But Yeah. I read that you do Krav Maga? Yes. I I've done Krav Maga. I have a yellow belt in Krav Maga.
Badass. Yeah. I love it. Oh, yeah. It's it was in a is one of the best experiences I've had, just doing that and getting that certification in 8 months of training.
I imagine you actually have, in some ways, more of a leg up because you do probably have extra skills in listening and sensing, things that we, who can see, take for granted because we think that the one sense is all we need, is that do you find that you end up teaching others about the other senses more than they maybe knew about for themselves? Maybe they pick it up, but I'll always explain, like, I I and it is true.
I do feel those different senses where if someone's by me, it's a pressure I feel, and then my reaction is my hands are a lot faster. That was something that was noticed during training was, like, really fast in reacting. And just listening, I do. That was something I did pick up.
And I was actually talking with my husband the other night about remembering growing up, and my mom would say, yeah, you would say dad's home, and he would, you know, roll up in the car, like, 3 or 4 minutes later because I could hear his car could hear his car and they're like, oh, he's not home, and then there he comes, you know, 3 minutes later. Does that also work with hearing people's voices and hearing what's actually
being said behind what's being said? Do you find that you pick up on that more? No. I've never paid attention to that actually. Not to go pay attention to that. Just because so many people say things, but they're thinking other things. I just wondered if there was maybe an inflection that you picked up on. Yeah. You can pick that up, but I've I've never thought of it as, you know, maybe a blind thing or not, because you can, you know, pick up on tones.
I'm not blind, so I all I can do is ask because it just seems like it would hypersensitize every other aspect of your being. Mhmm. Because I know that when I'm in a very, very dark room, the first thing I do in order to maneuver that dark room let's say I have to get up to pee or something in the middle of the night. The first thing I do is show my eyes. And as soon as I show my eyes, I can navigate the room. Uh-huh. Do you get that, I guess, that sense of direction,
you do that. I mean, I think it's bad, and I think it just when your eyes close, the rest of your senses get more heightened. Mhmm. It's a theory. I've been pretty it just that's what it feels like to me. Like, suddenly, as you said, you almost feel what's around you without even touching it. You sense it there like a bat, like echolocation or something. Yeah. And actually, I do that when I read. But my mom says I always have my eyes closed since I say I keep them closed so I don't get wrinkles.
But but when I read, I actually do close my eyes so I could picture it in my head. So you're deciding to go to school and now help people. Was that a no brainer? I've always gone to school. I didn't finish, I I only have, like, a few credits for my community college. I've always wanted to do massage therapy. And there was a school here, and I'm enrolled with Department of Rehab, and they help people with disabilities get, you know, education or or careers.
And they offered, you know, to pay for my schooling, and the local school I had here just wouldn't take me in. Nope. You know, you need someone certified to help you in the class. I did that. Nope. We can't do this. You know, whatever they threw at me, I was able to yes. I can I can do this? I can do it the way you guys want, but it was the vision thing they didn't see past.
So that was discouraging, and and when I had gotten just another evaluation for some new technology, the person who actually did my evaluation, Paul, he he said, hey. You know, he got a new client. He goes, you wanna teach him how to use, it's called Jaws. It's a screen reader that we put on our computers, and it reads everything to us, allowing us to navigate. And I said, sure, just jokingly. He goes, no, really. Do you would you like to
teach him? And I said, okay. And, you know, started there, and then I enrolled in a school for the blind that's in Arkansas and did my training for a year as an assistive technology instructor. And so, I just graduated here in September. Congrats. Certifications. Thank you. And but it's just been so gratifying. It's been really so gratifying because it's I've worked with all different ages, and just that oh, okay. I can I can check my email now? I can go online and shop.
It's just been so fulfilling. Fulfilling. Yeah. And it's just I guess this is what I was meant to do. I love it. It's it's a lot of work. I'm on the computer all day and then studying at night because I can I'm continuing my education with Cadis. It's a certified assistive technology instructor specialist. So it's a master's level program. And, yeah, and so it's just a lot of work, but it it it is paying off. Yeah. That's really lovely to give back also. Absolutely. Do you have a service animal?
Yes. I have Pawnee. She's my 2nd guide dog. She's a black lab, and my first one was Samantha. Oh. And so 2 different personalities. Miss Samantha walked around sassy and classy. You know, we strut our stuff on the campus, and miss Pani, she's a she's a little rocket, just full of energy and really, really fast. I say really fast, but I'm just so grateful for even, you know, being able to get a service animal Yeah. Have that sense of freedom.
When they when the animals come to you, do I know that they come trained, but then you add your own kind of whatever you need on top of that. Is that how that works? So we have to be, quote, unquote, cane certified using our white canes, and they come and evaluate us to make sure we know how to navigate, cross streets, walk in different terrains. Is that the word? You know? And making sure we can keep up with the amount of care that these dogs have.
So then we're flown out to the school or drive out drone drive out to the school and get 2 weeks of training. I went to Guide Dogs For the Blind, and it's 2 weeks of pretty much intense training, 6 AM till about 10 o'clock, working with your dog, you know, waking up, feeding them, grooming them, walking, and, you know, taking some courses. They offer, like, little lecture series and stuff like that, but it's just a really hands on experience with your dog and showing that you can do it.
Do they assign the dog to you? Do you go through a litter and say, that one? Or So they actually you do it. It's a process. They interview you. They get to know your personality. You can put in a request of what type of dog you want. It can make you list you're waiting a little longer. But, again, it's the personality. And then when you're there on campus, they evaluate you with how fast you walk, how fast you would like your dog to go, and then they have a certain amount of dogs that have
gone through certain phases of the training. So I think phase 8 is the they're ready to be assigned to a person. So Bonnie was just one of those bunches, you know, of dogs waiting to be assigned, and my instructor said, I know the the dog for you. I think you can handle her because she's a she's a little diva. She can be rambunctious, and, she likes to push, see how far she can get. Do the animals stay with you until they pass away?
How does that because I know that when I lost my dog, Mikey, it was probably the biggest pain I've ever felt in my whole life. Do do the dogs go back as elderly dogs to the places they come from? How does that work? So after a year, they're yours. Well, and I say that, you know, within that 1st year, if you mistrain mistrain them, They can pull the dog, you know, say, you know, this isn't a safe environment for the dog. But after the year, you can keep your dog up until they're passing.
Some dogs, you know, might need a career change, and depending on your living situation, you can return the guide dog, and they they'll find a dog you know, someone to adopt them. But if not, guide dogs for the blind, they will care for your dog up until the last another the end of July. Yeah. That was that was really hard, putting my Samantha down. Yeah. My first dog. Yep. And I I know the feeling you're going through. It's it's a very painful feeling. It's really painful. Yeah.
It's seems unfair that dogs live such a short amount of time. Mhmm. Yeah. I'm glad you got a new love bug though. It's good. Yes. She's she's so much fun. It's just a big puppy, and I'm just really thankful that, you know, they know work time, they know play time, and no matter what, they love you. They just get excited. The moment I cross that street, and it's like, yes. And I do I do get excited and do a little cheer and good girl, and they just know. Oh, I love that so much. Yeah.
They don't have guide cats, do they? That's not No. They're working on guide ponies. I know there's some guide miniature ponies. Oh, wow. I'd say what would Harder to get into a cab with a pony. I think that yeah. I think ponies, I think I haven't heard any other one. Oh, there's a actually a robot guide dog they're showing around right now. Really? Yeah. So that's interesting. I don't think I would want one, but there is a guide robot dogs.
I mean, I get the appeal of that, I suppose, but it's just it's not the same. No. No. They're gonna have malfunctions. Yeah. That's true. Of the road. You're like, ah. Yeah. I mean, I suppose a dog can malfunction too, but Yeah. It just doesn't feel the same. I was thinking also earlier about what you were talking about, AI being able to say what you're reading or what you're looking at and all that.
And this is the only thing in my humble opinion that AI should be used for because as a I'm a creative and it terrifies me to think that AI is coming for the jobs when AI is so well suited for helping in so many ways. And it just seems like people wanna take it and have it, you know, do all these other things. Oh, yeah. No. I I agree. Like with Jaws, or Fusion, the screen readers, we use keystrokes to make the commands happen on the keyboard.
And now, Jaws just did this f f s a I companion update so people can ask it. You know, what's the keystroke? I'm like, oh god. I'm out of a job before. Oh, yeah. Oh, well, that's a good point too. I got it. Robots. Yeah. Robots everywhere. What else? I also pets it, and my the people I pets it just got those little robots. Because I go, you know, scoop the litters, and I'm like, oh, god. Now the the little robots are trying to take my job. Oh, god.
I was like, oh, no. I imagine California is really good about supporting of all the states, California has gotta be at the top for helping provide industry and stability for disabled pupils. Yeah. The service has been really good here, as far as now, you know, with Department of Rehab getting services and and just different centers popping up. It it has been pretty good, you know, and there's when there's a will, there's a way in trying to find out those resources. Yeah. Absolutely.
Well, if people have any questions for you, is there a good way to to reach out? I haven't created a website or anything yet, but I'm hoping to, would love to share the film. We were couple patients and I were involved in. Let's talk about that. Yeah. So I did a film with Alexion. It's called Rare Connections in NMOSD. And it's just a few of us patients with NMO, and, again, neuromyelitis optica spectrum disorder, and just sharing our journeys.
And so you can actually find that video on YouTube called Rare Connections in NMOSD. And it's, a pretty powerful short film, and it's I'm just really thankful that I've been able to do that. Are you touring it out through festivals or anything? Yeah. So it's been put in, a few I know it was put in a festival that just debuted or showed last month. And I believe they're just trying to Alexion's trying to get it out in more places.
It has been recognized, for me to a pretty impactful video to receive some awards, and I'm surely glad to be able to have a part of that and share my story and and spread awareness on that. Yeah. Absolutely. And I'll put links to that on heyhumanpodcast.com's links page also. Thank you. Yeah. And anytime you get awareness to something that's specifically so rare, it hopefully will create some funding.
Yeah. Just more research and funding and just that, again, that it may reach someone that may be going through that journey and didn't know. Yeah. Is it classified as an autoimmune disease then? Yes. Yeah. Yes. Mhmm. Are you concerned about this new presidency and the the slashes to medic Medicare, Medicaid? It's all the disability programs that they're talking about. It is. It's it's very scary to think, you know, what is being threatened, and I just hope it doesn't happen. It just
hopefully, we can have a backup. I don't I really don't know what the backup plan is, but it's just it is very scary to think because then that could affect my treatment plans, which I know I wouldn't be able to afford. Yeah. I know there are some financial services, but, you know, it's just so many things out there that are resources that are gonna be cut, and no one's gonna be able to afford them. So it's it's scary, and I just hope
for the best. That's all I could, I mean, do and just reach out to, you know, our senators or just important people and let them know that we're human. We there's lives are really being affected. Absolutely. Absolutely. Alex, thank you. Thank you. Thank you for having me. I really appreciate it. Absolutely. I appreciate your time as well. Thank you. Thank you for listening, everybody. Bye. Bye. Rate review and subscribe to Hey Human podcast on Apple, Iheart, Spotify, wherever you get your
podcasts. Thanks. Bye.