Access For All: Supporting The Well-Being of Individuals Within The Blind, Partially Sighted, and Visually Impaired Communities

In this episode, we’re joined by we are joined by Francesca Mascarenhas, Mojgan Rahbar, Jessie Wolinsky as we discuss supporting the well-being of individuals within the blind, partially sighted, and visually impaired communities. 

The Access For All Podcast Series aims to explore a variety of topics related to the intersection of Deaf, Hard of Hearing, Blind, Partially sighted, visually impaired and physically disabled individuals lives as it relates to mental health, well-being and the accessing of mental health services.

The Access For All podcast series is meant to create awareness, reduce stigma, educate and create opportunity for discussion around issues related to the intersection of physical disability and mental health. Through sharing personal stories, challenges, and strengths we will discover how a physical disability can affect our mental health and how the state of our mental health can affect our physical body. We will also explore societal stigma around disability that can affect our mental health and ways that we can overcome them or advocate to change legislation and collective perceptions.

This project has been developed by the private, non-profit organization, Cross Cultural Expressions, in partnership with the Access For All, Underserved Cultural Communities sub-committee of the Los Angeles County Department of Mental Health. For more information on this project or to learn about Cross Cultural Expressions, please visit our website at crossculturalexpressions.org. To receive referrals or resources to mental health services, please call the LACDMH Access Help-line at 1-800-854-7771.

Transcript

[00:00:00] Madison

Hi everyone. My name is Madison Buteyn and I would like to welcome you all to the first of a series of six podcasts created by Cross Cultural Expressions in partnership with the Access for All Underserved Cultural Communities Subcommittee of the Los Angeles County Department of Mental Health. During this series, we will be exploring a variety of topics related to the intersection of the deaf, hard of hearing, blind, partially sighted, visually impaired and physically disabled individuals lives as it relates to mental health, wellbeing and the accessing of mental health services. This is an opportunity for members of these communities to sit together and discuss concerns, share resources, and give insight as to the work that can be done to keep individuals and communities uplifted and living their best lives. Before I introduce our wonderful guest, I wanted to make sure to share with everyone the Los Angeles County Department of Mental Health's Access Helpline number for Mental Health Services and Support. Please call the 24 over seven helpline at 1-800-854-7771. In this episode, we are joined by Francesca Mascarenhas, Mojgan Rahbar, Jessie Wilensky and Mastaneh Moghadam, licensed clinical social worker and executive director of Cross-Cultural Expressions. Enjoy. Welcome, everyone. Thank you so much again for being here. I could not appreciate it more. I wanted to give the floor to all of you and ask you about your journey and also your connection to this topic. Jessie if you want to go first, you can shoot.

[00:01:31] Jessie

Okay, great. Yeah. So, hi, my name is Jessie Wollinsky. I'm 30 years old and I am a blind woman. I am legally blind due to a condition called retinitis pigmentosa. Um, I was diagnosed when I was seven years old, so I've been living with it for most of my life. And for those who aren't very familiar with the nature of the disease is that you slowly lose vision. It's kind of tunneling in. So I have no peripheral vision. I also have no nighttime vision. The very small amount of central vision that I have is deteriorating and is not the clearest. So I am a cane user, very proud cane user for the past almost four years now. So I'm very happy to be celebrating that anniversary coming up. And I'm very happy to be a part of this panel because I'm very passionate about the blind community. I have been fundraising with an organization called Foundation Fighting Blindness since. 2006. So 16, almost 17 years now. And I've been very fortunate enough to raise a lot of money for blindness research. I serve as the chapter president in Los Angeles. And not only am I very passionate about raising money to find cures, I would say that I'm mostly passionate about finding people in the blindness community, providing them with some type of connection and being able to connect them with other people who are going through the same experience and mainly just providing hope because it can be a very, very scary, daunting experience and very isolating to be losing your sight.

[00:03:18] Jessie

I have struggled with anxiety and depression for most of my life because of it, and anyone who deals with depression knows how how tough that battle is. And, you know, I'm very, very passionate about making sure that people in our situation have as strong of a mindset as possible as they lose their sight. And I'm just I'm very happy to be involved with this sort of thing. And hopefully we can kind of get into the nitty gritty and the real realness about what it is to experience sight loss. And I always want people to know that it can be a very scary experience, and I want people to be very upfront and honest with the negative feelings that do arise by experiencing this, but also just want to, you know, enforce the message that just because we don't have sight doesn't mean that we don't have vision and we can still create really, really positive lives and maybe do things a little bit differently, but still do them. So happy to be here.

[00:04:21] Madison

That was so perfect. Thank you have so many questions, but I'll give the others too, a chance to introduce themselves as well. So, Mojgan, if you'd like to go, you can.

[00:04:32] Mojgan

My name is Mojgan and I am very happy to be here. Thank you so much for the invitation. I just, uh. I guess. Quick background. I’m 57 years old. I was diagnosed with Choroidal melanoma in 2006, actually. And, uh, back then I had a three year old daughter and two other older children, so. The thing that was mainly the issue for me at that moment was the melanoma was the cancer aspect of it, which because of the way that the tumor was growing in my inside my eye, they were very apprehensive about the fact that it might have metastasized and cancer, melanoma, if it does metastasize, it goes right into the liver. So that would have been sort of a death sentence. And so I think when this whole thing happened, my major concern was just to be able to be here and be here for my kids. So maybe as I'm looking back, that made the fact that I had to eventually, in order to get rid of the cancer, I had to remove my right eye. Um, it was not such a. Uh, sacrifice, because this is like, if I can if it can save me and enable me to stay here, to to be here with my children, that's fine.

[00:06:30] Mojgan

So, uh, that was my very, um. Um, I would say abrupt introduction to the whole world of AI issues because other than once in college, I had never even been to an ophthalmologist. I had always thought I have 20 over 20 vision until my eyesight on the right side became a little blurry after a trip to Disneyland of all places, and going on a really fun roller coaster with the kids. So. Uh. It was a it was quite a challenge. Um, but I think one beautiful sentence that helped me through it all was from a childhood friend of my sisters who had been having issues with her eyesight ever since she was in elementary school. And, um, I think 5 or 6 years before me, she had eventually lost the sight in one of her eyes and she emailed my sister and said, Tell Mojgan losing an eye is not a life changing issue. It's just a lifestyle changing issue. That really helped because and I think she was right with that little sentence for a lot of things that when things like this happen, um, you shouldn't let it change your life, but you can always manage to change your lifestyle. Here we are.

[00:08:20] Madison

Here we are. Thank you. That was lovely. Thank you for sharing. I also wanted to make a quick note before we ask Francesca to introduce herself. Is that my role? As is kind of like the mediator of this conversation? I am. I'm not blind, I'm not visually impaired or partially sighted. So although I don't have any advice to offer our listeners, I want to give the floor to you all completely and just to share your stories and anything that you're willing to talk about. The floor is yours. So I just want to say that and again, I'm excited. I'm curious. I'm ready to listen. All right, Francesca, let's go. Let's hear your brief little intro.

[00:09:04] Francesca

Hello, everyone. My name is Francesca, and I'm 21 years old, and I have this disease called Keratoconus, where basically the corner of my eye is becoming misshapen. So light isn't able to enter it properly. And I got diagnosed in December 2019, like right before I was going off to college, and I was supposed to have like a preventative surgery called CrossLink, um, which was only approved by the FDA in like 2018. So there's like no long term studies for it. Um, but I wanted to have that surgery, but unfortunately that was when COVID happened around March 2020 and a lot of people weren't able to have surgery. And by the time that I was able to have surgery, like my vision like deteriorated a lot. And I was only able to have surgery on, like one  of my eyes. Um, and I don't know, it all happened really fast and I didn't really know how to handle it and my family didn't really know how to handle it or how to treat me after it. And I don't know, I'm just trying to do what Moojan said, like adjust my life, um, and change my lifestyle so it fits me better. Um, I didn't realize, like how much I vision like impacts everything. Like I don't really have like night vision or depth perception because I only have one eye. Um, I'm like really light sensitive. So I wear sunglasses a lot and it confuses people when I tell them about my eye disease. Like it makes them uncomfortable for the most part. And sometimes people don't really believe me because I think it's kind of like an invisible disability, especially since I'm like, I'm not sure how to use a cane yet. Um, but I'm looking forward to learning how to do that. Um, just trying to set up the meetings, but yeah, that's me. Nice meeting you all.

[00:11:26] Madison

Thank you. That was perfect. Okay, so where I'd like to take this and feel free, as I was saying before, to chime in whenever you like, but where I'd like to take it is kind of hearing about the challenges that you all face, whether it's on a daily basis or when you were first introduced, I guess, to being blind or having your disease where you lost your vision. And how have you been able to work with those challenges along your journey?

[00:11:59] Jessie

Yeah, well, I was diagnosed when I was seven years old, so at that time it was kind of more something that my parents were really facing. Like I was just so young and didn't really understand what was going on. Um, but then I remember very vividly when I was about 14 years old and they sat me down and really told me the gravity of the situation that I would be eventually going blind. And I’m very lucky that my condition is slow going. So I don't you know, I experience vision loss at a slower rate rather than just, you know, next year losing all of my sight or something like that. So I remember having that conversation and it genuinely felt like my life was over. You know, I spent all my life as a seemingly normal child having dreams for the future. And it just it rocked my world. And I did not handle it well for a very long time, got deep into drugs and alcohol and absolutely anything to just escape from, you know, this reality. And I was so embarrassed about it. I grew up in a small town and there just wasn't a lot of people who were different. So I would have genuinely rather like fall down a flight of stairs and never be seen using a cane or anything like that. Um, so it's been a long journey to not only acceptance but, but also appreciation for my condition. And I know that might sound a little bit odd to actually appreciate going blind, but I think it's been able to give me such a unique and beautiful perspective that just most people don't have.

[00:13:31] Jessie

And but like I said, it's it's it's a journey and it's honestly, it's a daily journey because today I can feel really good about my situation and really confident and, you know, feel a little bit more at peace with it. And then tomorrow I can completely have a breakdown because it's so frustrating. And I think that. Francesca, you bring up such a great point that so many people don't believe us because I don't, you know, don't have a typical blind look, whatever that really means. I try to even break that down. As you know, not even having the typical blind look be a thing because blindness looks different for everyone, you know? And I think that one of the hardest parts, of course, it's, you know, losing vision and having to let go of certain independence and things like that. But the the really the tricky part is dealing with people who just have no idea about it. And as we know, when people aren't educated about something, they can be very cruel. So I think it's hard to kind of have that confidence in yourself, um, living in a world that's not designed for you and also living in a world where a lot of people who just don't understand, they will demean you or, you know, I was bullied all throughout my life and I still get it now from adults, you know, So it's a it can be very tricky to kind of stick with with what I know to be true and to have that sense of self while experiencing this sight loss. It's it can be very, very daunting. But I think a big thing for me is, is I’ve been in therapy for many, many years and that has helped me kind of, you know, not only find that confidence, but really create it.

[00:15:11] Jessie

Like I'm such a believer in creating happiness and creating confidence. It's not just something that you stumble into or that you’re born with. I really think that you can cultivate, you know, any sort of feeling that you want to have in your life. So I think, um, for me, being able to be in that program and just be as open and honest with myself and also getting involved with different organizations and like I said, connecting with other people because um, it can feel very isolating. So I think that that's really the, the main thing is just finding people who understand and being a little bit kinder to myself. You know, I had to let go of a lot of ideas of what my life was going to be. And, um, and I think losing your sight is just the biggest process of letting go. And it's such an art form to be able to let go of things. Humans, we hate change. And it is so, you know, tricky to be able to do that sort of thing. And you know, also, like Francesca said, we rely on our vision for so many things. So it's it's very, very tricky having to constantly make those changes. But, um, we're all just here doing our best, you know, we're all just walking each other home and doing what we can. So I try to do all that I can to, to stay as, as levelheaded and positive about it as possible.

[00:16:31] Madison

Being able to sit here with all of you, I know that we're over Zoom, but to gain a better understanding of what you all go through, I think is like not only helping me, but many listeners who want to support you and want to understand your story. So thank you for being honest.

[00:16:47] Mojgan

Building on what Jessie said, which was amazing. Just, um, you know, I think that the positivity in her tone and the way that she has come to terms that acceptance is something incredible not only for people who have some kind of a physical issue, but when I look around, so many people have a problem accepting even the smallest change in life, you know, something that may not be very significant, you know, change of address even might be something that people are not happy to accept. When I was faced with the situation, um, I seeked not only therapy as, as Jessie said, but also spirituality was one of the main things that helped me through it all. And you know, coming from a middle Eastern background and the eastern philosophies of spirituality and finding God and how things that happen to you happen for a reason. And, you know, it's very interesting that I lost an eye, but my eye opened to so many other things in the world, in my life, in myself, within myself, outside of myself. So it was some kind of an awakening. So that was one of the. Ways I dealt with it. Xanax was another way I dealt with it, which was very calming. And it took a while for me to understand that I can drive with with the one eye.

[00:18:33] Mojgan

It's okay. Or, you know, there are still issues. There are always issues that go on, other challenges throughout the past. 15, 16 years is the way that society, as Jessie said, and especially the culture that I'm in, looks at this. So even though my immediate family was amazingly supportive and helped me, you know, they helped me in every way because, you know, as I said, it wasn't only the the loss of sight, but it was also the cancer going through that whole thing. It was very good to have their support. But then everybody else, it felt like either people are always pitying you for what has happened or they're trying to help you hide it because God forbid somebody notices that now I have a, you know, false eye. It's a glass eye that I have instead of a real eye. And God bless her. The funniest thing, oddly enough, it was funny even at the time that she was saying it was my grandmother. So I've been through, you know, two different surgeries. And through all, you know, all these PET scans and all kinds of, you know, stuff, MRIs for the cancer. And my grandmother calls me and would, you know, her whole the beautiful sweetness that she has, she goes, okay, so this is what's going to happen.

[00:20:16] Mojgan

You're not going to tell anyone that you have a false eye. Now, nobody needs to know. You just need to pretend like it's all okay. And if anybody asks, just tell them, no, no, no, I don't have a false eye. And I'm like, But you do understand that I've been sitting home after two major surgeries for three months and people ask, Why haven't I been out of the house for three months? And she was adamant, Doesn't matter. You don't tell anybody. You don't say anything about this. It was sad, but also eye opening for a lack of a better word, the culture that she's coming from, because God forbid you have any kind of a issue. It's not only your issue, but you are also representing your children and your family and how are they ever going to look into anybody else's, you know, face saying that Mojgan has a has a false eye. All of these, you know, made me understand myself a little bit more because that's the culture I come from. It has been quite a growing experience in very many different ways.

[00:21:37] Madison

Very admirable that both Jessie and you have accepted what has been going on in your lives. Also, I think the next thing is just the understanding, like having a wider understanding for your condition, for the roles people play in your lives. Yeah, the bigger picture of things, which is very admirable Again, so thank you for sharing. Okay, Francesca, you're up.

[00:22:05] Francesca

After I got diagnosed and after I had surgery to, like, my family told me to keep my illness a secret. And the fact that surgery is secret. Um, I think. Uh, they're kind of afraid of, like, the pity and. Or they weren't really sure how to navigate the topic or how people will see us because I'm Filipino and I'm not Middle Eastern. But you are your your family. You you are representative of your family. Like, everywhere you go, um, you're gonna be attached to your family's name and understand, it's like a very different dynamic. It was hard. It was. It made me feel lonely, um, that I had to, like, keep this stuff, like, secret. And I couldn't talk about it to anyone. And when I did try talking about it to people because they're asking me like, Oh, like, why do you drop out of college? Like, are you a college dropout now? My family didn't really understand that. I was just taking a break just to readjust and like to heal from my surgery. Um, I think they thought I was being dramatic. They didn't really understand how being sick, like, made me really tired and how all these medications made me feel like awful.

[00:23:33] Francesca

And I think they thought I was making it up. The loss of like, independence. And I don't know, I always thought that college was like the time of my life where I'm going to go out in the world, but I couldn't drive. I still can't drive. Um, I couldn't really go places by myself. Um, I felt lonely because I can't really see people's like, facial expressions or when they say like, oh, like look over there or, um, I don't really know. Like if people are being passive aggressive to me, I've like, lost some friends because of that. Like, they think, I don't really care what they're saying about what they're saying or I don't really catch on if they're upset or not. Um. I don't know. It’s just a really hard place and I'm still going through it. But, um, I know I'm young and I have, like, a big future ahead of me, and I'm. I really think this is why understanding and sharing my story is important. Being in an environment where people actively seek out my opinion and care about my perspective and just like listening to you guys share it makes me feel a lot less alone.

[00:24:48] Mojgan

Don't think that you have to, you know, figure it out so fast. It's taken me 16 years. However much insecurity that I have or I feel about myself or sometimes I feel low about myself or low self confidence, how much more of that other people have, Which is very interesting because of the not having the peripheral vision and not seeing anything that's happening in my right on my right side. Social social outings are very interesting. And, you know, again, coming, as you know from a middle Eastern background, when you go to a party, you have to say hello to everyone. You have to be polite, especially the older people. You have to do this. You have to do that. If they're standing on my right side, even if they're not, I don't see them. So I have missed a lot of people, I assume, trying to get my attention or them thinking that they said hello or them thinking that I just passed by them, ignoring them. They start feeling so hurt, so angry. How insecure do you need to be that if somebody passes you by and doesn't say hello, the first thing that comes to your mind is that, Oh, they did not want to say hi to me. Instead of thinking that, Oh, okay, I heard somewhere or not even I heard somewhere. These are people that know me. These are people that have been with me for the past 16 years, and I've never hidden the fact that. You know, I'm partially sighted that I don't have a right eye. And I, I constantly remind people of this because of this same thing, but they always feel like I ignored them. It just gives you a perspective, I think, about those who are around you and those who want to be your friends and those who really care and those who really see you for who you are. Actually, it has been a great litmus test of finding who my my real friends are. The past 16 years. So. You know, that's that was actually a, I think, wonderful growth for me in many ways.

[00:27:21] Jessie

I can definitely understand that there's cultural aspects that I wouldn't personally understand about wanting to, you know, stay silent or anything like that. But I just want to say that there's no strength in silence. I think being able to be vulnerable and being able to really embrace your most, your most authentic self is the most admirable thing that someone can do. So the fact that you both are even here and talking about your condition like I honestly, I commend you and applaud you guys because I, I have never been told anything like that from my family and I couldn't imagine how painful that would be because I did go through several years where I tried to hide it for myself. I was just embarrassed and I became a professional at hiding my condition and pretending that I was okay when I just was not. And I don't think there's anything more painful than stifling who you are. And I think that there's so much beauty and power and embracing it. And we can't I mean, how are we supposed to live a happy life if we can't even accept ourselves in the most basic level? And to be able to be told that we need to stifle that and, you know, act like we're not going through something that we are going through, is is, I'm sure, incredibly painful to hear. And I think all we can do is really just embrace our situation and try to see what we can do with it. And, um, you know, Francesca can definitely relate to you about, you know, being in college. I'm 30 and I just got my bachelor's degree a couple months ago, and that is something I never thought I could do.

[00:29:00] Jessie

I remember being in high school, all of my friends were applying to colleges and I was still in that mindset. Genuinely, when my parents told me about my condition, um, I decided at 14 years old, I was like, okay, well when I lose more vision or I go completely blind, I will end my life. And that was my life plan. So applying to colleges or having any sort of idea for my future, it was absolutely laughable to me because I, I was just told, I'm going blind, my future's over. I have no future. I can't do anything. So to be able to come out of that mindset, it's taken a long time. But there is, you know, so much time in the world to do absolutely anything that you want to do. And even in my college class, I graduated with people who were in their early 20 seconds. I graduated with people who were in their 50 seconds and 60 seconds. And there's no time limit or timeline for anything. And like I said, I just really want to, you know, applaud you guys for for being here and being able to be open about your situation because that's that's what it's all about. We can't help what we're given, but we can always control how we react to what we're going through and think that nothing is as empowering and and amazing as saying, Yeah, I have this. And what we all have something, whether it's a physical disability, a mental thing, an experience that provided us trauma.

[00:30:23] Jessie

We all have something and everybody does. And um, I think that you bring up a great point about other people's insecurities, you know, don't want to be looked at as less than just because I'm blind and I really have to do a lot of work to kind of educate people on a daily basis. And some people just don't want to understand and they're going to take it personally. And oh, well, she didn't notice my facial expressions. And she she's not asking questions about how I'm upset. And I think a big part of what I've had to do is just learn how to advocate for myself and really let people know like, hey, this is what's going on with me. And having a cane has been very helpful for that because it's an identifier so people know right off the bat, okay, I'm not going to try to shake her hand. Maybe she won't be able to to see it or something like that. And I really had to be very honest with my friends, like, hey, you need to, you know, let me know when you're putting something in my hand. Let me know if you have something to talk about or you make a little face or something. I'm not going to be able to see it, but I want you to know that I care. So I think a big part of, you know, breaking down those social stigmas and kind of creating better social meaningful connections in those situations is is just about learning how to advocate. But it's it's a process like anything else.

[00:31:33] Mastaneh

But you said a very interesting thing, Jessie, about feeling like you have to be an advocate. And it's so funny because I think you’re all, whether you like it or not now advocates in a way too, and it just kind of goes with the territory. So I'd love to hear a little bit of your feedback of how you've managed that role in your journeys.

[00:31:57] Jessie

Something that's tricky is like you have to advocate for yourself not only in your close relationships with friends and family or at schoolor things like that, but even at the grocery store, even just getting a cup of coffee, you know what I mean? I'm getting questions and and things and comment, you know, like there's. There's always those moments where you just you're like, I just want to come in here and, like, do my thing and leave and just be a typical person in this establishment. But, but, um, you know, the fact of the matter is that that we're not and we are going to stand out. And I think that it can be very uncomfortable, but I think that there's a lot of beauty in that. You know, I really have really embraced the idea that I'm not like everyone else and I don't want to be I'm not here to just be like everyone else. I have a very powerful message and story. And every time I'm walking down the street with my cane, it sends that message and it kind of helps break down that stigma against blind people or visually impaired people. And, you know, I think advocating for yourself, it really just first off, stems with knowing yourself and accepting yourself and saying, hey, this is what I have, what can I do with it from this point on? And and letting your family and friends know as openly and honestly as you can about what your needs are and what your feelings are. They can say, okay, well, you're just, you know, don't understand it. So you're you’re faking it or you're this or you just want to, you know, give you attention.

[00:33:18] Jessie

And it's like, no, that that's not the case. But you also need to understand, I'm experiencing the world in a very different way than you are. So whether or not you understand it, which you never will because you will never walk in my shoes, I at least need you to be able to empathize a little bit or at least understand where I'm coming from. Mojgan You brought up such a great point about you find out which people are really meant to be in your life because they're going to listen. They're going to be like, okay, I don't understand. I can't really relate. You know, I never will be able to and that's fine. But they're at least willing to to kind of hear you out and still being, you know, able to help you and ask you, hey, what do you need? You know, I had an ex-girlfriend and she would always say, how can I show up for you? What does that look like to you? Because maybe for me, in this way, I need you to do these certain things. But maybe your love language and how people show up for you is completely different than mine. So I could be showing up for you in this way that I think would be so beneficial for me. But if that's not how you receive love and how you, you know, receive help, it could not only be unhelpful, but but potentially offensive. So I think that being able to be, you know, as open and honest with what your needs are and being able to communicate them effectively really helps with being able to advocate for yourself and kind of make connections with people.

[00:34:46] Mojgan

This experience elevates you. It evolves you, it makes you grow in ways that other people are not able to grow. And maybe that's the gift that it brings you. You know, it is very hard to to be your own advocate. And it's also very hard. Dealing with my mother was very hard. The one person that you would think would be the one that would tell you it's okay was the one that was telling me, how am I going to live with this? Forget about how you're going to live with it. You know you're losing the eye, but how am I going to live with it? And I think the second time that it was really made me understand that I have to be the strong person here was when we were coming back and we were in the airport after because I had to go to I live in Los Angeles. I had to go to San Francisco. To have the tumor removed because they were saying this doctor has done amazing stuff. He can save your eye even by removing the tumor. So we did that. And a month later, when I went back, he said, I'm sorry the tumor was too big. The retina has torn. So you can either keep sewing up the retina and maybe live with 10% vision, which eventually will become zero. Or you can just take out the eye and make sure that it doesn't metastasize. Then you will be saving yourself. Radiation and chemotherapy. And as we were coming back, it was like for me, the answer was, of course I'm going to take the eye out.

[00:36:31] Mojgan

I mean, 10% vision is not something that I'm going to risk not being here with my children because of the cancer. And we're sitting in the airport and my husband is now for the first time, you know, he doesn't cry that often, but he was like teary eyed. I'm like, what’s wrong? He goes, You can't lose your eye. And I'm like, Yes, I can because I want to be here because I want to live. Now I had to be the strong one to tell him, It's okay. I'm okay with losing an eye. It's fine. We're fine. Let's just make sure that the cancer part is where we are. I'm trying to avoid. It was interesting. I mean, I understood that for my children, I would have to be the strong one and to, you know, keep them laughing all the time or making fun of the whole thing. You know, my three year old was very scared of the eye patch that I had, you know, So I'm trying to make fun. You pirates have eye patches, you know, things of that nature. But it was very hard to have to do that with my husband, with my mother, with my grandmother. You know, these are the people that you're actually thinking They are going to be the strong one. And they were for their own, you know, for their own part. But it was interesting.

[00:37:50] Madison

I have a question. How can we even as a collective or maybe if a loved one of yours is listening to this or just a listener, how can we best support you all along your journey?

[00:38:03] Jessie

They need to ask you that question just as you said it. I think a lot of times people assume that they know what to do or they think it’s going to be, you know, helpful if they do this thing or say that thing. And we can't read people's minds. We don't know what they’re going through. You know, people can't really understand how we feel emotionally. And I think it's a constant check in. And I'm so grateful for the people in my life being so receptive to that message when I say, hey, just just ask me, you know, how can you show up for me? What can I do? What does that look like for you? And even that can be an evolving thing. Sometimes we don't always know what that looks like for ourselves. So people say, okay, maybe I'll try this or try that. Um, so yeah, it's a little bit of a trial and error process, but yeah, just, just like you said, Madison being able to ask them point blank, how does me supporting you look like to you? What does that mean? What can I do? What can you teach me? What resources can I find out for myself? And I think that the people who love and care about you are always going to be interested in hearing that that answer and and doing a little bit of their own work to figure out how to support you. And it's tricky and it's hard. But but I think that that's a big part of where our advocating, um, you know, comes into place. We need to know how to tell people what our needs are.

[00:39:28] Mojgan

Everybody around you is more lost than you are, which is, which is an interesting thing because you would think that I'm the one who can't get around. I'm the one that. That bumps into all kinds of stuff in the supermarket because I can't see my right side, you know? But they are more lost than you are. So you need to tell them what you want, not not only be able to ask it, but be able to accept what they give me. So even accepting that is a little bit hard because we've always been told, you know, you have to rely on yourself, you have to have control. You have to be the one that does your own thing. And, you know, sometimes no, you don't. Sometimes it’s okay to say, no, no, I really want you. Actually, even if even if you're not offering, I want you to go out of your way to come and get me, because that's what I would do for you as a friend.

[00:40:25] Jessie

I think a lot of times we're so afraid to ask for help. But more often than not, I think most people, they like helping other people. You know, there's so many times where people say like, Oh, it felt good being able to to help you out, even if it's a stranger or like one of my best friends or whatever. I think people are kind and helpful for the most part. And so sometimes all we have to do is be brave enough to ask for their help.

[00:40:49] Francesca

I was pretty, um, independent and proud of it, and I was more of like a caretaker figure in people's lives and something that I’m appreciating about being sick is it kind of forced me to take care of myself better because there's, there's no choice to take care but to take care of my. Self better. Like don't know. It's a something I'm learning. Jessie was saying about having to be your own advocate. You have to really say how you feel and set boundaries. And that's something I'm kind of learning how to do, along with asking for

help.

[00:41:29] Mojgan

The first person that you have to be an activist for is for yourself, for ourselves.

[00:41:36] Madison

We're going to record again a second podcast, which will be an addition to this one so we can get into even deeper topics about accessibility and maybe more on mental health and self-compassion. So I wanted to start wrapping things up for this episode and ask if any of you would like to share anything else that you think needs to be said with regard to what we've talked about today.

[00:41:59] Francesca

I just want to thank you guys for sharing and thank you for you guys for organizing too. This is like one of my first experiences where someone like actively sought out my perspective and it feels very validating because, you know, most of the time people have told me to like, you know, be quiet about this stuff. And yeah, I just wanted to express my gratitude. Um, but yeah, thank you. Thank you.

[00:42:29] Madison

You're everything that you said today is very valuable, and I'm happy that this was your first experience in this type of environment.

[00:42:37] Jessie

And I will say, Francesca, I hope that this only encourages you to do more so because there's nothing more beautiful and amazing than exactly who you are and exactly what you're going through and just you talking about your experience and you as well has just given me so much more power and strength. And I think that's the main message that I always want to leave people with is like, you can't help what you're going through. But there's there's so much amazingness in what you're going through and in your story and who you are. And the more that we can lean into that, the better that we can do for our own life. And for other people's lives. And I remember one time I met Stevie Wonder for like two seconds after I made this speech at this event, and he told me that people like us are losing our sight to teach people with eyesight how to have vision. And that is something think about all the time. It's like we are going through this for such a unique purpose and we are here to just make the world a kinder and more inclusive place. And there’s so much power in leaning into our true stories. So I really commend you women for being here and being being vulnerable because it's it's the most powerful and beautiful thing that you can do. So thank you.

[00:43:52] Mojgan

It's been such a pleasure to meet both of you. And thank you so much to Mastaneh and Madison for arranging this. I really appreciate it. This whole thing, one thing that I, I would like to point out for anybody who's listening, again, going back to my culture, one of the things that they don't believe in is therapy. And the other thing is group therapy. You know, God forbid you sit in a group and you tell what's wrong with you or try to find people that have the same issue. But the one thing that truly helped me the first couple of years was a Facebook group that was for one sighted single sighted individuals. And just being able to share and to see the common issues that I had with other people. Uh, on that Facebook group. It just made everything so much easier to digest for me. And it was very, very important. It is very important to, uh, to have somebody that understands what you're going through and vice versa. So I’m very happy that these podcasts, I hope they will continue to help other people. Thank you.

[00:45:25] Jessie

We all need each other, you know, So very happy that we could all do this together. Thank you so much.

[00:45:32] Mastaneh

I don't think you guys understand, like, how powerful this was. These conversations are so valuable and so important. So once again, thank you so much.

[00:45:44] Madison

I would like to thank our wonderful speakers for giving their time and wisdom and being here today. I want to remind everyone that if you're in need of mental health resources and support, you can call the Los Angeles County Department of Mental Health's Access Helpline at 1-800-854-7771. I also want to invite you to listen to our other podcast episodes, as well as our YouTube series that addresses the topics of mental health and wellness as it relates to the deaf hard of hearing, blind and physically disabled communities. For links to the podcast and YouTube videos, feel free to reach out to cross-cultural expressions by emailing us at Connect with CCE at gmail.com. You can also find links by going to our website at score.org.

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