Brighter Horizons: Navigating Life After Vision Loss with Aisha Na'Sha|
Episode 28
In this podcast episode, we hear a compelling narrative of resilience and adaptation from a Aisha, who experienced sudden vision loss due to a rare condition called pseudo tumor cerebri or idiopathic intracranial hypertension. Aisha shares her journey from diagnosis in adolescence to navigating high school and transitioning to a specialized blind school, providing insight into the challenges and triumphs of adjusting to a new way of life. After graduating, Aisha embarked on a vocational rehabilitation program, eventually securing a job with the assistance of employment specialists. This episode illuminates the importance of support systems, adaptability, and determination in overcoming adversity and pursuing one's goals despite unexpected obstacles.
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Luisa Recchia (00:02):
Welcome everyone to the Pediatric Retinal Research Foundation podcast with Aisha. Today we have Aisha joining us and interviewed with Brey. In just a second, I'm gonna ask Aisha to just tell us a little bit about yourself.
Aisha Na'Sha| (00:21):
My name is Aisha. I go by the Indiana Blind Girl across all platforms on social media. And I've been creating videos for the past, I wanna say like three years. So ever since Covid time and I've found blind talk and I've kind of just been thrown into that and I've been able to speak at the Bosma Foundation Dining in the Dark about a year ago now. And you know, telling my story, they did a whole piece about it. I'm on a bus now and all that good stuff. So yeah, do social media to like show people who aren't in the blind community, you know, that we can do things just like everyone else. We're normal we're, it's nothing weird about our disability. So that is who I'm in a, in a, in a small circle of it.
Brey Willitt (01:06):
Right. But you're so successful in everything that you know, as soon I've been following you for a long time and as soon as you know, I was, you know, kind of transitioned the position to run social media and stuff, I was like, I knew, I knew you were one of the one, the first people I wanted to have on the show just because your story is so inspiring and I feel like your story can help so many young people. Um, so what exactly is your diagnosis?
Aisha Na'Sha| (01:30):
Okay, so I, it goes by two different things. It's either pseudotumor cerebri, which is a false tumor, which is what I had. And it also goes by idiopathic intracranial hypertension. So the condition was brought on by stress and a lot of weight gain, which you can gain this condition a couple of different ways, like the weight gain if you like get pregnant and you're in that like 30, 20 to 30 range in age as a woman, you can also gain this by like how quickly a baby grows and then you know you're excessively gaining the weight. Then you also can get it from birth control. So in my case I had a lot of stress at the age of 13, well I would say like 13, 14 going on into 16 and that's when they had found out about it. So basically it's a false tumor.
Aisha Na'Sha| (02:21):
Your cerebral fluid just doesn't drain properly. And now I since have had a {inaubible} 20, so that's good. So that part for me is good. But yeah, it acts as a false tumor and it just reacts to your body and it hits the optic nerve. It hits the spinal cord and it just completely goes outta whack. So I was caught with it a, I would say later on, I had a doctor tell me like if I would've caught this a year ago, six months ago even, you probably would still have enough vision to drive. But mine was caught in my freshman year, well the end of freshman year of going into my sophomore year. So I've been having this ever since I was 16.
Brey Willitt (03:00):
That's insane that it just can randomly decide one day that you know it's gonna happen because there's no, yeah, there's not really any warning signs of any sort really. Is there?
Aisha Na'Sha| (03:11):
I was having like total blackouts, like my vision would be completely 20/20 and then it would go completely black. It happened for me overnight I guess. Like I, I just remember being at home and my grandmother was, they had left like my grandmother, my cousin, my little brother had left the house and I was just like, you know, 16-year-old just at home by herself. And I remember like a guy was walking around the neighborhood at the time asking people did they wanna sign up for like some cable service or something in the neighborhood. And I couldn't see any other word on the paper besides notice. So I'm thinking, you know, it's, this is something crazy going on. My grandmother had came back to the house and she was like, you told me all you saw was notice. I said, yeah, there would be big yellow letter, against this black paper.
Aisha Na'Sha| (03:57):
And she was like, I'm gonna take you to the eye doctor. She took me to Dr. Tabell and he had did my eye exam and he was like, how did you walk in here without running into everything? And I was like, oh, you know, pretty much. And he was like, no, this, this is bad. That's when they found out I had all that fluid built up in the back of my eyes. I did have headaches, the headaches did come along with it and I was thinking, you know, take some ibuprofen, Tylenol or something. Nothing. When I say nothing actually helped that headache, I would just be in my room in the dark after practice. 'cause I was still, I was still trying to play, what was this softball at the time because I, we had just wrapped up our volleyball season and I was literally at practice one day and I remember the coach threw a ball at me. He was like, you didn't see that coming, did you? I was like, yes I did. You know, trying to really play,
Brey Willitt (04:49):
Trying to play it off a little bit.
Aisha Na'Sha| (04:51):
Yeah, <laugh>, I was just like, I, I swear I seen it. And he was like, no, I threw a couple of these at you. The whole practice you, you didn't flinch it one time. And I was like, okay. He called my grandmother and that's what really jumpstarted 'cause I was telling friends like I think this is allergies. I don't think this is, you know, anything crazy, never had allergies in my life, never not allergic to nothing. So I don't know where I got that from. I think I was more afraid of like there's something being wrong than actually like confronting, you know, what was going on head on. But it was definitely overnight. I woke up one day, I could sleep just fine, playing softball just fine. Next day, couldn't see anything. And then, you know, I did get a spinal tap when they found out that night 'cause Dr.
Aisha Na'Sha| (05:39):
Tabell told me like, hey you need to go take her to the Riley Children's Hospital. And that night I was told about the pseudotumor and then the, the IIH, which is the idiopathic intracranial hypertension. I had so many scans and everything and I was like, all overnight? Like I just found out about this at like, you know 12:00 PM in the afternoon. Like this is crazy. My whole life from that moment had changed and I didn't even know, you know, exactly what I was going through. You know, processing all that and at, at a young age just thinking, okay, well I'm driving, I’m learning how to drive. And being told that same day, like hey nope, don't get in front of nobody's car, you can't drive nothing. Like it was really overnight for me. For sure, for sure.
Brey Willitt (06:24):
That is absolutely insane. So what, so after you know you got your diagnosis and everything, did your vision kind of go back? Did it improve or did it just kind of stay the same or?
Aisha Na'Sha| (06:37):
So when I had the spinal tap, I had also had got told that same like within the same couple of days that I was gonna need an optic nerve sheath. And that's basically where they go in behind my eye and cut open my optic nerve to you know, let the fluid bleak on through as it's supposed to. And that worked for years. I got put on acetazolamide, which also is known as diamox and that is supposed to keep off the excess fluid. But that lasted for about a little over five or six years. But no, my vision had never got corrected after that. The damage was really done the most in the right eye. That's the only eye they were gonna do at first. They said if the surgeon was successful with that eye, they're gonna do the other eye. I came outta surgery from being in the hospital for like two, three days and he pretty much told me, well no it was a she, the doctor, Dr. Smith, she was telling me like, you know, we wanted to just do that one eye.
Aisha Na'Sha| (07:35):
But we realized that the other eye also had damage but not as much. And that's my left eye, that's my good eye. So they pretty much told me like if it was six months before this, if it was a year even before this, we probably could have, you know, saved your vision. But I was 16, 15-16 years old really just having a normal, you know, high school life. Living life as normal, just going through it and not knowing that I had major things going on. So when I was having those headaches and blackouts, that was the fluid trying to escape, but it had nowhere to go through. It just went to the back of my eyes. It went to my, my, my brain, what, what do you call that? Your your, the back of the brain. It just sat there. So it went nowhere. So it was just building up, building up. And when I had the spinal tap, that's when they knew it, 'cause it, it just kind of shot out. The spinal fluid just shot out from the back of me and they were like, yeah, you, you've lost a lot, a lot of vision but they are happy that it didn't completely go. So they were able to save a little bit but not a lot. Not as much as I would wish.
Brey Willitt (08:40):
Of course it's always like that <laugh>. So when you went back to school then after everything had happened, you know how, how did that change? You know, how did your high school career kind of switch paths after your diagnosis?
Aisha Na'Sha| (08:54):
So this is the funny thing, <laugh>, I was going to a private school at the time and to go to that private school you had to go to work. And you would go to school basically four days out the week and then they would put you into a corporate job. So I didn't think that I was gonna be kicked out of that school, but they ended up contacting voc rehab, and vocational rehabilitation was the, that during that time, this is 2012 by the way. I don't think I said the dates of this, but this is all happening my summer going into my sophomore year. So when I got back to school, the teachers didn't know what to do with me. They didn't, they didn't wanna have me like walk up and down steps. So one day I came into class and they were like, oh nope, you're not going to class today.
Aisha Na'Sha| (09:37):
You're gonna go with this counselor and she's going to just, you know, do some tests and things like that to see if you are able to even still be here. And I'm thinking like, dang, I went blind <laugh> and y'all kicking me out. So she had, oh my god, practice walking up steps, and she had me like learning how to rewrite things and she, you know, was just a voc rehab counselor. She's not really, you know, a, an aid or a eye doctor or anything like that. So she had mentioned to me like, Hey would you consider going to do a tour at the blind school? And I'm like, no <laugh>, I'm in my head. I'm like, I'm still normal. I'm I, I don't wanna go there. So this is like November of 2012. By December of 2012 I was taking a tour and this is right before Christmas time.
Aisha Na'Sha| (10:28):
So I had got removed from the private school and I was kind of like in limbo for a couple of weeks because the Christmas break, New Years. So I started at the blind school after doing the tour. Mind you, that was my first time around some of the kids with disabilities. I had never seen anything like it. So I was like, Brey: I'm sure it was an eye-opener for you. Aisha: Yes, <laugh>. It really was like my grandmother, she's excited. She is like, this is what she needs. Like forget what you think you're gonna do. Like no, you're gonna go here. I had also took a tour of the closest like public school as well 'cause they were gonna take me to. But that school wasn't the best. So I was like no, I don't wanna go to that school. I'd rather go to the blind school if I can't go back to the pub, to the private school.
Aisha Na'Sha| (11:14):
So I go, I take the tour and I'm like, oh I don't know about this. Are y'all sure about this? And my grandmother's like, this has to be the best thing. Like they could teach you everything you need. So I think the dates are between January 14th and January like 16th somewhere in that, those couple of days, I had started my first day at the blind school. Within, I wanna say, my first couple of months at the school, I had learned grade one braille and grade two braille. But they had showed me how to use like the CCTVs and I learned how to rewrite things. I learned basically my my O&M skills, all that. Like I got my cane my first week. I was so like, months ago I was a normal kid at a different school. And I would say the start of 2013, I was trying to like get un-angry with my situation, and I started to talk to people a little bit.
Aisha Na'Sha| (12:15):
So before I would say that spring break I was fully in the motions of accepting like this is my new reality. And then I kept telling myself, you’re gonna get your vision back like this, this, this is just this school year. This is just like the worst school year ever. Like you started the school year seeing and you're gonna be able to see by summertime. Summertime came, still couldn't see. Summer came and went, I was at the blind school still and I'm like, oh this is real, this is still happening. So all life changed tremendously because I had to go to the blind school and I was like, it's just a new start for me. But I did get used to it. I can say that. I definitely got used to it and I love those people there. Like oh my god, they want me to work there. But I live like 45 minutes away. So technically not really, you know, the most real realistic thing. But if I could, I definitely would go back to like just to be an aide there and work with them.
Brey Willitt (13:12):
That, yeah, that is, wow. You know, I've always, 'cause I didn't lose my sight until I was probably 21 is when I lost the majority of my sight. You know, I had issues throughout high school and stuff, but I just went to, you know, a normal public school and I've always heard people talking about, you know, you know the different blind schools and stuff like that. And you know, I've never actually spoken with anyone who's actually gone through it and everything.
Aisha Na'Sha| (13:38):
There is this thing, workforce, and that's where kids will come from, like a regular public school or whatever school they were at initially. And they will be there one week. So a full five days out of a month. And this is like an every month thing. I, I would say after my first two years at the blind school, I kept asking my grandmother, can I please go to regular school? Can I please go to regular school? I can do short course. But I think she was nervous that like, you know, some, some kids would do something to me or you know, that whole thing, and I'm like, I think I can do it. I think it's possible, but it, it's definitely a difference. The only thing I can say is you don't have to go and ask for the assistance that you need. The teachers already know, they know everything that you'll need and everything's in the classroom with you. So I think that's probably the biggest difference. You don't have to go the whole voc rehab route, you could just, you know, go to class.
Brey Willitt (14:32):
Yeah, that's awesome. And you know, you still learn regular classes and stuff, right? For those who you know might not be so familiar. Yes. So that's awesome.
Aisha Na'Sha| (14:41):
If you are needing O&M training still, like your cane skills and all that stuff, or just, you know, O&M skills in general, being someone who is low vision, they will still take you, like it will go into your schedule. So say you had all your regular academic classes throughout the day, but one class in that day will be you going to O&M for that particular day. Um, for me, I did have braille twice my first year. I had braille twice, I had it once in the morning and then I had her by myself. Oh, shout off Mrs. Davis because I know I was not easy. But once I started to understand it and get it, the, that second class that I did have with her was like, it was top tier. I, I really needed that one-on-one. And then I can say too, with the blind school, you do get a lot of one-on-one because in your classes it may only be you and probably five kids all day. Like if you and the same kids, they kind of just cycle us through each classes. So I can say that that was something that I enjoyed. I went from being in class of like 20, 30 kids to just being in a classroom with me and five to six other kids, max. The same <inaudible>, you know, graduate with.
Brey Willitt (15:57):
<laugh>. Yeah, that's awesome though that you get to form those, you know, intimate connections, you know, with your peers and then also, you know, with your teachers and stuff like that as well.
Aisha Na'Sha| (16:05):
Yes, for sure.
Brey Willitt (16:06):
So after high school you went back and did a different type of voc rehab, correct? Yes. You wanna talk a little bit about that?
Aisha Na'Sha| (16:14):
So after high school, a couple of years, I kind of just was like living life didn't wanna do much. I couldn't even say that I didn't wanna do much. I didn't, I didn't know what I wanted to do. Like this was my early twenties. I'm still like, oh I don't, I can go to school but I can work, you know, that whole thing. So last year, I'll just bring it to last year, I decided like, okay, I no longer have covid. I like, I I've recovered from my shock surgery that I had in 2020. Like it's time to, you know, figure out what you wanna do with your life. So I have hit back a vocational rehabilitation, which is a service that helps people that have disabilities. You don't just have to be blind too. I know there's some people that aren't sure about who or all they help, but they do help people with disabilities through school and work.
Aisha Na'Sha| (17:03):
So with the school route, if you wanted to go to school, they'll, they're there to help you with assistive technology and anything that you may need. And I think they also can like assist with money as well to help you pay for school. But I decided that I wanted to go for work. Like I wanted, I wanted a job, I needed a job. So I decided to first go through a blind training program and I went through the Bosma program. I love Bosma, they're amazing here in Indiana. Um, and they help everybody in the, in the main state. As long as you're over the age of 18 you're wanting to work, they will help you. So I think it's like a 16 week course that they take you through and voc rehab, I think they pay for all of this. So you go through the 16 week program and depending on what levels of what you need, they help you with that.
Aisha Na'Sha| (17:52):
So if you need more O&M, they'll put you with O&M. If you need more of like the household things, lets say you lost your vision later in life, they help you out with that. So I was at a hotel, you can, if you're close enough, you can commute, you know, there and back every single day. But I had to stay at the hotel for those 16 weeks in. It wasn't that. So throughout the training I was there to really get my assistive technology things together because I was like, well they taught me how to use, you know, JAWS, MVA, all this type of stuff when I was at school, but I needed a little bit more refresher if I was gonna go back to work. So I went to Bosma, they had helped me out with everything that I needed and I was like, okay, I'm, I've graduated from the Bosma program, I think this was like September of last year, so September of 2022.
Aisha Na'Sha| (18:42):
And I was done with that program and I hit up voc rehab and they said, okay, so the next step is to get you in a job. So they had placed me with a job employment specialist and that was something that I didn't really know too much about, but I did do the, it was a thing. So basically the employment specialist will help you go to interviews. They will get you basically a whole job readiness program. The interview portion, they'll teach you how to properly say certain things in interviews to help you get the job even better, resume help, things like that. But voc rehab is still there as well to assist you to say if you did a computer job, if you needed the program with the jobs program or NVA on the computer at work, they could help you and come and you know, go through your job with you like that.
Aisha Na'Sha| (19:31):
Also the employment specialist can come to work with you like, I think this is the first month or if you need a couple of weeks or however long you need, they'll, they'll basically hold your hand and help you understand and navigate the job. So I think that's awesome. I worked with Benchmark last year and that's who I'm going back with because this year I did get laid off from the job that I got last year. So I'm back in the motions again with looking for another job. But voc rehab has always been a source for me. Like anytime anyone's ever like, oh well I have this disability but I'm needing more assistance to like help me find a job and all this stuff. And I'm like, go to voc rehab, they will help you. They will assist you. They're not gonna turn you away unless you know you're just not doing what you need to do on your end to get back and forth or.
Aisha Na'Sha| (20:19):
I think also they'll even help you with transportation to and from work. So like it's a full service that could help you get exactly what you need as far as a job or even getting back and forth to college if you need help with like, okay. I think, uh, this is like a disability service inside of you know, the job not jobs inside of colleges. They'll help you and work with your disability service center in your colleges to even help you out even more with making sure that you can pass your classes, get to your classes and all that good stuff. So voc rehab is a full service that does what you need them to do to help you get what you need.
Brey Willitt (21:00):
That's incredible. You know, that they are able to, you know, not only teach you all of these things but also, you know, able to help you get out into the job force and stuff like that. That's, that's so awesome. And I wish, I wish more people knew about it because I had not known that much about it. That's awesome. Mm-Hmm.
Aisha Na'Sha| (21:20):
<inaudible> for people.
Brey Willitt (21:21):
What do you think some of the most important things they taught you were while you were there?
Aisha Na'Sha| (21:25):
At Bosma or going through voc rehab?
Brey Willitt (21:28):
Well just say voc rehab. You know, as a general rule.
Aisha Na'Sha| (21:30):
I would say they had just taught me to never like give up on the things that you're actually wanting. I know when I had first left high school, I had hit them up and I started services with them to get me into college and they pretty much, you know, walked you through the process if you needed anything. Um, especially the, the assistance technology because being someone with a disability, it's like, it's so expensive. <laugh> like being blind and needing certain things like the magnifiers, the screen readers, like all that type of stuff. Like it gets very pricey. So just knowing that they're there and it's a free service to you, like you don't have to pay anything out of pocket at all. Like this is the service that the government just allows for you. As long as you live in the states, you can get voc rehab. So they just help me stay independent, let me know like, hey, like you do not have to be homeless. Oh, I think I did mention that too. I think they also will assist you with housing as well as needed. So like when I say they’re like that helping hand, they'll be there for you along the way. As long as you're doing what you need to, like, they're definitely going to be there for you.
Brey Willitt (22:40):
Wow. That's, yeah, that's incredible. You know, and especially for people who don't know what's out there. Yeah. I'm hoping that you are able to, you know, ignite, you know, some ambition and you know, prove to some people that, you know, you don't just have to, once you leave school just kinda, you know, sit around and do nothing. Yeah. Just 'cause we're blind. Yeah.
Aisha Na'Sha| (23:02):
There's so much out here that people can do. Like I know right now with the working from home, it's such a big thing, like if you need it, if you got on into a job and you know you needed like assistive technology help with like learning how to navigate your computer, they can help you with all that. Even getting you the devices to even assist you a little bit more, like you can or everybody can get a job. It's very, I wouldn't say it's easy, these, these things <laugh>, I wanna say it's easy but it can be easier if you had that extra help.
Brey Willitt (23:32):
Of course. Is there anything that they didn't teach you that you know, they, you wish they kind of would've touched upon?
Aisha Na'Sha| (23:38):
As far as me, I haven't had a lot of negative experiences as far as what they didn't teach me. Besides like, just make sure that you are an advocate for yourself. They teach you that by sometimes you may not hear from your VR counselor for weeks at a time and that's because a lot of their caseload is really like backed up. I know this last time that I went a couple weeks ago to get my services back going, he told me like it could be a 45 to 60 day wait. So after a couple weeks I was like, okay, lemme start calling and you know, texting and seeing what's going on. So I think they teach you how to be a lot more patient because you know, they have, it may be you plus 25, 30 other people that they have to, you know, take care of. So just making sure that you're staying patient. I think that's the biggest thing that they've taught me for sure.
Brey Willitt (24:28):
That's awesome. Do you think that, you know, because you went to voc rehab and stuff, do you think that that definitely helped you raise, you know, your own self-confidence and you, you know, your self-esteem?
Aisha Na'Sha| (24:40):
I would say yes to that because I think being someone that does have a disability, you get into the mode sometimes of thinking like, hey, like I can't do this and you know, oh well my disability will stop me from doing this and stop me from doing that. But it's like the only person that's stopping you is you. And that's something that I even had to teach myself. So having a service that is there, that's free. I have to even say that <laugh>, I know a lot of people are like, oh, these services are out here, but I may have to pay this cost. But it's like, no, like as long as you are wanting to have that help, that help is just know it's always going to be there for you. The, the easiest way to get in contact with them, I would say is Google my nearest or the nearest vocational rehabilitation center near me so that you can get your services set up with any area that you may need as far as like working and as far as getting back to school.
Brey Willitt (25:33):
That’s awesome. Trying to think. Is there anything else that, you know, you wanted to talk about as far as voc rehab wise or anything else just in general?
Aisha Na'Sha| (25:41):
Not at the moment.
Brey Willitt (25:42):
How about any advice to people that are kind of on the fence about going to rehab or just kind of trying to do it themselves? Any advice for them?
Aisha Na'Sha| (25:49):
My biggest advice, honestly is to don't wait. I think I had gotten to that mode for like, I wanna say like four and a half years of, oh, do I wanna do it? Do I not wanna do it? I would say if you know that it's gonna be something that's gonna benefit you in a positive way, just do it. Like, don't, don't do like me and wait almost until you’re like 30 and be like, okay, it's time to get things going. I wish I really, really, you know, caught them years ago when people were telling me in my life like, Hey, why don't you just call vr? Just call vr. I wish I'd never waited that long. But I can say that I had successfully worked with them two other times and now I'm working with them a third round to get back to work because I did get laid off, like I said, back in September of this year. So just know you don't have to like, not work or not do school or anything like that, like the services that are out here to help you.
Brey Willitt (26:42):
Awesome. And, and just one more thing. I've heard that you've recently got married, so congratulations.
Aisha Na'Sha| (26:48):
Yes, thank you so much. I miss my name. Oh, that's been a, that's been a thing. I, my debit card still has my maiden name, I don't think.
Brey Willitt (26:56):
Oh yeah.
Aisha Na'Sha| (26:57):
But yeah, thank you.
Brey Willitt (27:00):
I might have to hit you up. I'm getting married next October, so, well I guess not next October. No, this upcoming October I guess now. So I might have to hit you up, you know, for some advice on the best way to go about things.
Aisha Na'Sha| (27:11):
Oh yeah, I got you. I got you.
Brey Willitt (27:12):
Awesome. Well thank you so much for coming on here and sharing your story, especially for people that, you know, weren’t exactly sure what voc rehab was or you know, the ins and outs of it. So we really appreciate you coming on here.
Aisha Na'Sha| (27:25):
So thank you as well for having me. And if you ever need me back, I'm always here.
Brey Willitt (27:30):
All right. I'm sure we'll, we'll ask you back soon I'm sure. Awesome.
Luisa Recchia (27:34):
Thank you Brey and thank you Aisha, we really appreciate having you here. If anybody wanted to reach out or follow you, where should they go Aisha?
Aisha Na'Sha| (27:43):
I have my big, can't talk, my biggest platform is TikTok and you can find me on there as the Indiana Blind Girl. I'm on Facebook, same thing. Also Aisha Nasha, that's A-I-S-H-A-N-A-S-H-A on Instagram, pretty much if you type in the Indiana Blind Girl, I will pop up.
Luisa Recchia (28:03):
Wonderful. Thank you so much for sharing. Those of you listening out there, if you can go ahead and follow Aisha at the Indiana Blind Girl. Did I get that right? Indiana. Indiana. Indiana Blind Girl, <laugh>, sorry about that. Well I wanna thank you so much and thanks to all our listeners on the Through Our Eyes Podcast and we look forward to having you join us again.
Aisha Na'Sha| (28:28):
Thank you. Thanks for having me. Awesome.
SHOW NOTES
Connect with Aisha Na'Sha here: https://linktr.ee/AishaNasha