Access For All: Living A Fulfilling Life and Being Yourself Within The Blind, Partially Sighted, and Visually Impaired Communities

In this episode, we’re joined by Mojgan Rahbar, Jessie Wolinsky, and Rusty Thorpe as we discuss living a fulfilling life and being yourself 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 to the fourth 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 the 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 guests, I wanted to make sure to share with everyone the Los Angeles County Department of Mental Health's Access Helpline number for Mental Health Resources and Support. Please call the 24 over seven helpline at 1-800-854-7771. In this episode, we're joined by Rusty Thorpe, Jessie Wolinsky, Mojgan Rahbar and Mastaneh Moghadam, licensed clinical social worker and executive director of Cross-Cultural Expressions and Joy. We are starting now the second installment of our podcast series for the Blind, Visually Impaired and partially Sighted. So if listeners are listening now and you haven't listened to our first episode, definitely check that out. We'll have it linked in our show notes. I did want to give a chance to all the participants today to introduce yourselves again. And it's okay if it seems like it's repetitive because if we have new listeners, it'll be new to them. And we can start with our newest member for today who is Rusty. So if you'd like to give a brief introduction and then your connection to this topic and the blind community, go ahead.

[00:01:55] Rusty

Yeah, most definitely. My name is Rusty. I was born with a rare birth condition in both of my eyes. Low vision blindness, detached retinas. Cataracts. The whole nine yards, disability, all that stuff my entire life. Um. So, yeah, it's been a journey for me. Presently I am blind in my right eye and luckily I have quite good vision in my left eye. Now after many, many years. But as I said, I've been through the gamut of, you know. Almost losing my sight 100%. Half sight, low vision. So, yeah, that's my story.

[00:02:38] Madison

Thank you. Thank you for sharing and welcome. Jessie, if you'd like to go next, just a brief introduction for our new listeners. Hi.

[00:02:46] Jessie

Happy to be here. My name is Jessie Wolinsky. I have a condition called retinitis pigmentosa. I am legally blind, but I basically have very severe tunnel vision. So I have no nighttime vision, no peripheral vision. And the central vision that I have is slowly deteriorating. And it is not the clearest I was affected or diagnosed with my condition at seven years old and now I'm 30. So luckily my condition is decreasing at somewhat of a slow rate. So I'm very grateful for the remaining vision that I do have. I do a lot of advocacy work and fundraising work for an organization called Foundation Fighting Blindness. And yeah, I'm just very, very happy to be here.

[00:03:32] Madison

Thank you. Perfect. All right, Mojgan, My name.

[00:03:35] Mojgan

Is Mojgan and it is a great pleasure. Honor, actually, to be here with Rusty and Jessie. And I want to thank Mastaneh and Madison. 2006, I was diagnosed with Choroidal melanoma, which is a tumorous cancerous tumor in my right eye. Finally, after a couple of different surgeries to try and remove the tumor, the decision was made that for my health and hopefully so that the cancer will not metastasize. I would need to remove my right eye, which I did. It's been a very interesting journey since then, in many ways, very eye opening. Even though it was a loss of an eye.

[00:04:27] Madison 

I did actually write that in my notes. I wanted to sort of hear more about that phrase because as I was editing our last episode, you had said, Mojgan, that you lost an eye, but your eye has been opened in a sense. So kind of just wanted to have you share a little bit more about that experience.

[00:04:47] Mojgan

About three years before I was my diagnosis, I got this urge to start researching a lot of spiritual literature, a lot of works by, you know, different spiritual masters. I'm from an Iranian Middle Eastern background, so, um, poetry and spirituality is very prevalent within the community. For some reason, I had this huge appetite for delving into all these things. You know how to open the third eye, how to see things that you may not usually see or notice. And when this happened with the eye, we took the spiritual way of thinking about it. It really was like a another eye opened because there was so much that I was surrounded with that had made me sad or was heavy on my shoulders throughout the 40 years of my life back then. And I think the loss of the I just opened up my own, um, perspective. It gave me a different perspective. It opened up a whole new way of perceiving stuff, uh, for a lack of a better word, looking at stuff. I noticed things opened up for me about myself and about people who I'm surrounded with. So that's why I always say, even though I lost an eye, it was like my eyes opened up. I could see things that I wasn't seeing before.

[00:06:43] Jessie

I've always kind of felt like, Oh, I'm losing my physical vision, but I'm gaining more spiritual and emotional and that type of vision, you know, really talking about that third eye, like Mojgan said. And I mean, I think we're losing sight, but not vision. I feel like my vision for life is really just. Gotten so much stronger and so much more powerful. And I've really been able to kind of look at what I'm going through in such a beautiful way, in such a it's kind of turned into a blessing in a lot of ways. It's changed my perspective on myself and life that I truly don't know if I'd be able to have without this disability.

[00:07:27] Madison

I also had noted that in the last episode you had the quote, which this is not verbatim, but it was along the lines of Although we don’t have sight, we still have vision. And so if you wanted to elaborate on that more, I feel like that could be very significant.

[00:07:42] Jessie

I don't want to like coin that quote as something that I came up with. I think it's definitely one that I've heard throughout my life from other blind or low vision people. I've been able to gain vision in the sense of gaining more appreciation for my life or my experiences, because the vision that I do have is slowly deteriorating. It allows me to be a little bit more present in each moment and just appreciate each moment so much more than maybe the typically sighted person. You know, I every time I see a sunset, I tear up because I just don't know when my last one is going to be. When I see my friends and families smiling, laughing, dancing, like I think knowing that that will be the case one day really allows me to connect so much more with the present moment and be truly grateful for having that experience. And, you know, they always say you have to enjoy the little things because they're really the big things. So I feel like that's that's rings very true for me. And it's also brought me a lot of clarity in terms of, you know, how I look at like my appearance. I mean, as we know as women, we are shoved with this message about needing to look a certain way or whatever. And it's kind of so ingrained in all of us. And I really had to do a spiritual journey with that, saying like, how can I be absolutely picking apart my physical appearance when one day I won't be able to even see it? And that's not even where my true beauty lies. People will never remember what you said or how you looked, but people are going to remember how you made them feel.

[00:09:30] Madison

Thank you. I had heard from Francesca, who was on our episode previous to this one. She had suggested talking about, in quotes, the bright side of sight loss. And I don't want to fall into the category of toxic positivity ever, but I just wanted to open the floor up to all of you and ask what the quote unquote bright side of sight loss or your journey has has been.

[00:09:58] Jessie

Yeah, well, I can definitely relate to not wanting to share toxic positivity. I do that a lot on my own social media where I as I struggle a lot with depression and anxiety and suicidal thoughts, which has been really related to my condition. So I really want to share a positive message, but I don't want to just say that, Oh, no matter what you're going through, you can just turn it around and no problem and it's so easy and just be positive, pull yourself up, all that kind of stuff because it's a process. And for me, I know that it's a lifelong process and one day I can feel so confident and, you know, at ease with what I'm going through. And the next day I can't get out of bed and I can't find any sort of way to feel good about my situation. So it is a process and I don't want anyone to feel like if they're struggling with accepting their disability or if they're struggling with depression or I don't want people to think that they just need to suck it up and you can just feel better automatically. It is possible to get to a positive way of thinking, and it's just about building up that toolbox that you have of things that you know will help you feel better. Whether it's as simple as taking a walk or calling a friend, if that even looks like medication for you, if that looks like having some mantras that you repeat to yourself or, you know, there are so many different things and it looks different for everyone. You know, there's a way to experience negative things and be very open and honest about how those experiences, you know, shape you and make you feel. But also there's there's a way to work through them and to get to a better state of mind in general.

[00:11:46] Madison

Yeah. Thank you. I like that you had mentioned your difficulties along with the more positive side of things. Just because I feel like a lot of times everything is so black and white in our society and it's it's worth mentioning that you had to go through your hardships and maybe overcome. Com them are still working on them in order to achieve that acceptance that you were saying. So thank you for sharing.

[00:12:11] Rusty

I think for me, since mine is condition retinal coloboma that I've had since birth, it's been. A struggle for me from the get go. A lot of my depression and anxiety comes from the sort of not knowing if one day I will be blind and then having to deal with the visual disability all over again. You know, I start to get get going in life and then a retina detaches or I get going in life and, you know, I go blind in an eye or I get go in life. And because my condition was so rare, they couldn't do cataract surgery on my good I call it my good eye. Um, the one that had the best vision growing up. And so then I had to go through the decision of do I finally have this surgery, which someone finally agreed to. I actually flew back to Los Angeles and Michigan, took me to the doctor's appointment. I researched my visual condition plus cataracts and found a doctor at the Jules Stein Eye Institute. And I had to make that decision. It was it was 50 over 50. I could live with low vision. Or I could have the surgery and maybe be blind. Or the upside is I could maybe have some quality vision.

[00:13:37] Rusty

And it was a long. Hard journey of about 17 years of waiting for the surgery and I couldn't work anymore. I was on disability payments. My family was prepared to move me into their house if I was, you know, lost my vision and and start the new life. And I had the surgery. And I have the best vision of my entire life and it's been such. So I'm going to cry now. It's been such an emotional roller coaster, but it doesn't take away from the fact that I still have the underlying anxiety that it's going to go away. So I have to work on my. Mental health every day to make sure that don't let those thoughts come in and also to allow me to be present and appreciate the things that I. Have never been able to see before. And hopefully I continue to be able to see again. And if I don't, as I'm getting older, I'm 50 now. I am hopeful, but I still live with that underlying anxiety that this might be the last day something could happen and this may be the last day. So that's the challenge that I face.

[00:14:51] Mojgan

In the last. Podcast. I said, A good friend told me that losing an eye is not life changing, but a lifestyle changing occurrence. And that was rusty. I've known Rusty since she was seven years old and she is one of the most amazing people. I mean, the sense of humor, the amazing personality. When this happened to me, the cancer and the loss of sight. A friend of mine had bypass surgery. You know, they thought he may not make it, but thank God he made it. He was fine. He had such appreciation for life and everything was six months after his surgery and after that, Since he's fine and everything is okay, he doesn't think about it anymore. It's not a daily occurrence that he wakes up and he's like, Oh, I have anxiety, or Oh, do I? Am I going to make this work or not for myself? I don’t have that because every single day when I wake up and I look into the mirror, I have a false I. I have an eye that, you know, I have a glass eye that I have to deal with. So sort of this reminder that every day is precious. It's something that I deal with on a daily basis because it wasn't something inside of me that I could forget. Although the anxiety that comes from it, because, you know, now I also started having cataract and I'm thinking about how is that going to work? You know, that anxiety that is with you on a daily basis. Is also the thing that makes you want to be positive on a daily basis. It's a reminder that, Oh, I'm here now, the present is amazing and I will just live in the present, live in the moment, live in the now. So that has been a curse and a gift, actually, in my opinion, for me.

[00:17:12] Madison

What sort of tools do you call upon to whether they be external or internal, to manage the anxiety that you feel on a daily basis? No motion that you were talking about a change in perspective and how it makes you look at life differently. But I did. I'd love to hear from you as well, but also the others.

[00:17:35] Mojgan

You know, I'm just gonna add to that, of course. Perspective change. That's true. It's amazing. Therapy is amazing. Spirituality reading is amazing. But it is the Xanax that helps when you're on a really low. So don't just don't discount the amazing medications that are out there, because sometimes it's just none of that is going to help you Just, you know, you're done with your healer. You’re done with your therapist. You're done with the people around you. And yeah, the only thing that can take the edge off is the Xanax.

[00:18:14] Madison

Thank you for mentioning that, because I feel that medication sometimes is demonized in our culture. So it's nice that you share that because that is what's helpful for you.

[00:18:27] Mastaneh

Yeah, I kind of want to, uh, um, say something about that as well. This is Mastaneh. And, um, I think a lot of times working as a therapist, you know, there are some times where I, having done this for over 20 years now, get a sense of when it's time for the client to really start to consider psychotropic medications or supplements or other types of medication. And I don't think that, you know, drugs are the answer necessarily, but there certainly can be a very beneficial part of any toolkit and any program. And so I, you know, wouldn't mind spending a couple of minutes if anyone has anything to say about it, to just talk about the shame that a lot of people feel when they start taking psychotropic medication and to really, in my own way, help dispel it. Again, I'm not encouraging it. And everybody, you know, obviously needs to see what works for them and speak to a psychiatrist or a medical doctor. But at the same time, you know, those medications are very helpful to a great number of people. And so just like there should be no shame attached to therapy or support groups or anything, that's part of your tool kit to help you lift you up. There's a lot of shame around having to take medication that people struggle with that, you know, I think definitely needs to be addressed.

[00:20:08] Jessie

You bring up such a great point. It's very personalized. So what might work for one person isn't going to work for someone else. And it's always important to be able to kind of figure out what your needs are and consult with professionals. It takes a village, you know, it takes a lot of different people. If you have a doctor, a therapist, um, psychiatrist, whatever it is. But you need to figure out what works for you. Like, I remember when I first started taking antidepressants when I was a teenager, there was a huge stigma around it. I didn't want anyone to know. I really didn't even want anyone to know about my disability. I was so closeted in that way. And I'd been on several different antidepressants. And right now I'm in a place where I I'm not taking them. And it's been very beneficial for me. But it's it's a personal thing. And once I feel like maybe I will benefit again from that medication, I have absolutely no problem with going back on it if it aligns with with what I need. So I think that so many times someone will say, Oh, well, I'm not on this medication anymore. And I just started working out and that's all you need and it's fine. So you shouldn't be taking this medication either. And it’s like, okay, if that works for you, wonderful. But we're not talking about you. We're talking about me. So I think a big thing that can be tricky for people is to kind of learn to stand up for themselves and say, okay, this is something that I need for myself. Whether or not other people take it or feel okay about me taking it, it's not about that.

[00:21:42] Jessie

It's just about doing whatever you need to do to take care of yourself and to live your own best life. And I do think medication can be very beneficial. I also think everyone should be in therapy whether or not you're disabled or not. I don't think there's anything wrong with people talking about how they feel. And, you know, we all need to be in a place where we can be brave about being selfreflective and learning how to handle our emotions in a constructive and healthy way. Mental health is a huge issue in this world, especially in the United States. That just is not addressed in the way that it needs to be. For me personally, therapy has been a huge thing. I also do like to incorporate exercise. I'm very, very big on exercise and healthy eating and doing anything that I can. I feel like it's all kind of a combination of things. Also journaling. I think that you really can't get to a place where you feel good about yourself or your life without being open and honest about all of your feelings. So for me, journaling has been a great way to be self-reflective and check in with myself, and you really never know what will come up. Same with like a therapy session. You just don't know once you start talking. Wow, maybe I did need to speak on this or whatever it is. So we all need to be brave enough to find the combination of things that truly works for us and not, you know, believe any sort of stigma or any sort of outside negative talk when it comes to how we address our mental health.

[00:23:17] Rusty

I was a teenager and the anxiety started to rear its ugly head badly after I initially detached my retina in my good eye. Um. I 100% needed therapy. I needed mental health treatment, and my parents just didn't understand. They were more hippies. And so they thought, you know, kind of hippies. And also, you keep your you don't air your dirty laundry. And it was a different time and a different era, and I've reflected on that a lot over the years, how my life would have been different if I would have gotten that mental health treatment. When I was 16, I finally convinced them to let me go to therapy when I was about 18. But I just didn't have any emotional tools even to speak to the therapist. Like, I didn't know how to do it. I'd have to write down my thoughts and hand them to her before a session. Like it was just such a foreign concept therapy to my family. I sort of took the the bull by the horns when I was 22, and I went to a psychiatrist and I got diagnosed with depression and anxiety and put on Prozac and oh, my God, life changed. I've gone off a few times or I've changed. Brands. I've done everything. I've done spiritual journeys. I've found mindfulness, but I always come back to I need my. My antidepressants and it's just my daily medicine. You know, like they say, if you break your arm, you get a cast and you get medication. I say, my brain's broken. I have to take my medication today just to make sure that it all stays together and it keeps healing. And I hope that my openness about taking my medication does help others.

[00:25:06] Mojgan 

I became such a outspoken person about this whole thing. I mean, we sit in a place which I just met people and go off about talking about, you know, I took Xanax, I took Wellbutrin, I took this, I took that whatever for my depression, for my anxiety. And people look at me and people get uncomfortable a little bit and they figure out, okay, it's the crazy lady with a glass eye. So this is what she's saying. It is so interesting how many phone calls I get from. Almost strangers or very distant acquaintances. A month, two months, a year after calling me and saying, Remember that day in the party you were talking about antidepressants? Can you tell me about it? People who need it actually hear you. And it at the right moment, it clicks and it helps them and they come back and they want to hear more about it.

[00:26:07] Jessie

Well, John, I love that you bring up about the people who reach out to you about it, because, number one, sharing my story helps me. It makes me feel better about owning whatever I have going on. No one else can use anything against me if I own my own story and I embrace it and I can express it. But you just never know who your story is helping, whether or not that person reaches out to you or not. You could have a completely, you know, amazing effect on someone that you don't even know. I'm very open on social media about, you know, my blindness and my depression and even my suicide attempts and even spending time in psychiatric facilities. And I've had people say, oh, maybe that's just a little too much or too personal or you don't want people to see you in this light or that light. And I said, You know what, light? I don't care. I want to be in the light of the truth. I want to own my story and I don't want to act like I need to be ashamed of the fact that these things have happened. And by putting it out there, I have gotten so many people who have messaged me saying I went through the same thing. I tried to take my life. I was in this hospital. I take this medication, I whatever it is. And a lot of times the people that reach out to me in that way are people that I would have never expected would feel that way. You know, I maybe knew them in high school or whatever it is. I look on their social media and their happy as a clam and everything's so wonderful and I have this great life and you really never know who your story is going to help. And it could very, very well save a life. And I'm really, really in awe of of you women for being able to share your story so openly and honestly. And it's very beautiful.

[00:28:00] Mastaneh

As Jessie said many times in the previous podcast. And I want you to talk about this again, Jessie. It is that vulnerability that actually makes us the safest once we come to terms with the fact that, you know, that acceptance, that acceptance that we're safe regardless of what this person or that person or the other thinks, and that there's always going to be love and support around us as long as we open ourselves up to it. But opening ourselves up to it requires vulnerability. And once you have that courage, then all of these traumas do become a badge of honor that you can wear proudly. These are our life experiences, right? And there's no reason why anyone should feel like they have to hide their life experiences. This is why we're here. This is what we're made to do.

[00:28:56] Jessie

Oh, I could not agree more. I always say that my vulnerability is my greatest superpower and I have only felt so much more confident and so much more self-assured every time that I allow myself to be vulnerable. And I truly think it's the best thing that everyone can can do for themselves. And I always I remember one time this person told me when I started sharing about my depression, they said, you know, you're not you're not depressed. You're just you're weak. Like depression is just something weak. People, you know, want to say because you're sad and you can't pull yourself up or whatever it is. And I said, weak. I'm the strongest person in this room right now for getting up every single day and fighting against my depression and choosing not to let it, you know, hold me back in any way. And I'm still out here, you know, doing my thing and creating a great life for myself despite this depression. So I really just want listeners to to know that there is nothing weak about it. And you're probably stronger than than the average person for going through this type of thing. And I think that's also something very specific to the blind community is, you know, you might see disability as a weakness. Um, but it's such a strength because we are all navigating a world that is not created for us. Having to do that every single day is a challenge, but we're doing it and I think that that is incredibly powerful.

[00:30:29] Mastaneh

Absolutely. I would love to hear how many of you engage in, um, humor. Sense of humor. I find that when. People can look at anything with through the lens of humor that it really makes life more uplifting. So I would love to hear your input on this.

[00:30:52] Rusty

I don't know where my sense of humor came from, but I think it is my most powerful defense mechanism. I think the universe gave it to me so that I could get through all of this. I am the first person and I think it really helps when I say, Oh, I have depression, anxiety. And they're like, But you're like the funniest, happiest person that we know, the most positive person that we know. That's my defense mechanisms, keeping all of the stuff that's inside. And also it it allows people to breach that gap. And and because I'm laughing about it or making jokes about it, it just makes it a more positive environment to actually talk about these things. And then you get to know people. They want to know your story because you're the funny one in the room. And then I can start saying, Oh well, did you know when I was 16 I had a nervous breakdown and was in bed for three months? They're like, What? I'm like, Yeah, let me tell you about that, you know? Or I went blind when I was 16. It was fabulous. Let me tell you about that, you know, and all the things. And they’re like, What are you talking about? Or when this happened and I almost lost my eye again and had to have surgery and they're like, What do you mean? You know? And then or the other time when I'm blind in one eye and they're like said, whatever happens on the Blind Side stays on the blind side. So if you want to do anything naughty or anything, do it on that side. I'll never know. Mama will never know. And that's just the gift that the universe gave me.

[00:32:18] Jessie

I love that you bring up humor because it's it's so true. I think that a lot of people think, oh, you're either, you know, sad or you’re happy or you're anxious or you're fun loving or whatever, and it's like, you can be all of it, you know? We all experience a spectrum of emotions and we're meant to experience all of them. And like me, being blind or having depression doesn't make me any less fun or doesn't make me funny or being able to have have a good time, you know? So I get that a lot too, where people are like, Oh, but you're so upbeat and positive and always giggling. It's like, Yeah, that's just also my personality, you know, my, my disability or anything else has nothing to do with. Who I am on that sort of level. And also I'm been able to kind of lean into my humor a little bit more as well, because if you can't laugh at yourself or laugh at certain experiences in life, like you're just going to take everything a little bit too seriously. And Rusty, appreciate when you said you could be serious when you need to be. You could be silly when you need to be. We can be all of it, you know, and I always say people ask me that a lot.

[00:33:29] Jessie

They're like, well, how do you feel about blind jokes? I'm like, mean. I make blind jokes about myself all the time and like, I'll get a kick out of it. I'm like, as long as it's a funny joke, like, don't, don't just say it to say it. Like actually actually be funny. But but also definitely depends on who that person is. You know, if someone comes up to someone and they just say a blind joke and that person wouldn’t appreciate it, you know, you have to know who you're speaking with. If it's a friend of mine who knows that, I would find it funny. I have no issue with it. But you could say to someone who could take offense so it's about knowing people and knowing what’s respectful, of course. But mean, gosh, we're we're here on this earth to have a good time, man. We got to figure out ways to do it. We got to be able to laugh at ourselves and laugh at our situation. I'll be the first one to crack up at myself when I run into someone. Or do you know? It just. It happens. You got to find a you got to find the lighter side of things sometimes because it's it's definitely there.

[00:34:27] Mojgan

Not everybody is that I have known or heard about is this positive or is accepting enough to want to work out everything that’s happening and reach a positivity? You know, there is this amazing people called Ocularists. These are the people who make the fake eye for me. And I was at their office and like everything else, I was there with my daughters. And, you know, he took out the glass eye to to fix it or clean it. And my daughter started making fun and singing songs about the fact that I have one eye. And he started laughing and he goes, you know, I have people who come here who have had a glass eye for 20, 25 years and their family members don't even know it. And these people are so serious and so angry and so upset that it is hard to work with them because they haven’t even accepted it for themselves. But there are people who have not been able to deal with whatever this trauma is that have not been able to see it, as Mastaneh said, as a sacred wound or as a as Jessie said, as a as a. A power that we have. So I just hope that programs like this can make those people understand that this experience could be something amazing if you let it or if you see it for what it is.

[00:36:19] Mastaneh

If you're looking to really live your best life and if you're looking to live a life where you do experience that sense of joy and happiness, it doesn't mean that you have to be joyous and happy all the time. It just means that you have to develop that flexibility and nature to be able to move through the rough times and get back to the joy. And I think that that's something that. Maybe people are most resistant to understand because they almost feel like, well, no, if, you know, I have this thing happening or I've experienced this loss, or in this case, if I'm experiencing blindness or, um, you know, complications with my vision, then every morning I have to wake up and remember how sad that is. And if you keep yourself in that place of whether it's sadness or anger or depression or grief, then that's pretty much all your life is going to be. But you can have those moments and there's no shame, certainly in having those moments, but also be willing and looking for a way to, uh, on a daily basis, find your way beyond that back to a sense of joy and upliftment and happiness. And, um, I think sharing and all of these tools that everyone has presented today, uh, is really different ways to get there.

[00:38:00] Rusty

For me, I'm not joyous and happy and, and hopeful all the time. It's just an underlying guess. It would also be sort of a coping mechanism as well, is I have this. Strange layer of hope that's always been inside of me. And I think it comes from having encouraging family and friends. And it's taken a lot of I've only recently become acquainted with these things called emotions and especially the negative ones, because to find out that they are just emotions. Um, and I'm still working on that. But for me it's been. A journey of ups and downs when I discovered mindfulness and radical acceptance. Wow. That was a game changer. Um, and when things happen to me now that seem like, oh, why? Oh, woe is me. Why again? Why me? Why me? Why we This too shall pass. And when I get to the other end, I'm going to have more strength. And I'm going to be able to hopefully help other people. And on a sort of cosmic level. I do believe that I am working out some stuff for my next spirit for whoever gets the spirit. I'm doing the hard yards so that when they get this spirit it will have a little less. Wrinkles in it, and it's taken me a long time to realize. It's because I'm working on this for someone else, and that's what keeps me going.

[00:39:46] Mastaneh

That's beautiful. Thank you, Rusty.

[00:39:49] Mojgan

You know, there are daily challenges that I face, like all of us face because of this disability. As Rusty said, I always think, well, this too shall pass. You know, this will happen, too. I'm saying, you know, like I conquered cancer. I, I conquered this whole challenges of living with, you know, one with partial eyesight. I if I got through that, I'm going to get through something else, too. My decision is my intention is that no matter what, I'm going to make this into a positive experience for myself.

[00:40:24] Jessie

Ultimately, at the end of the day. You need to choose what you want your life to be about. And yes, we cannot control the feelings that just naturally come up, but we 100% control how we respond to those feelings. And I've met so many people who they felt angry for so long and they say, you know, I just I can't help how this makes me feel. I'm just angry about it. What do you want me to do? That’s how I'll always feel. And it's like I want to validate that. But I also want them to know that there's other ways to feel about the situation if you're willing to look at it. And sometimes people can be stubborn and want to stay in those feelings, and especially if they've been feeling that way for such a long time, that's comfortable. Feeling negative, feeling angry, feeling sad. That's a comfortable state for them to be in. And we all like our comfort. We don't like to go out there and change and do work to, you know, to change our reality. It can be very, very uncomfortable and very uneasy. And I definitely get that. But if you want a happy life and you want to, you know, good life, I'm not saying it's happy all the time. Of course, everything is a process and a spectrum and it's all of those things.

[00:41:41] Jessie

But at the end of the day, how you want to feel about your life is ultimately up to you. And Mojgan completely agree with you. Like, I have to always make that decision for myself. Like, yes, this is frustrating. Yes, I'm angry. Yes, I wish I didn't have to deal with this, but it is what it is. I cannot control that. I'm losing my sight, but I can control how I react to it. And I just refuse to be angry. It doesn’t feel good in my body. It doesn't feel good for the people around me. I can't enjoy life. And there's so much to enjoy with sight, without sight, with depression, without it, whatever it is. Like I said, life is meant to be enjoyed. I truly believe that is why I'm here on this planet. I just want to have a good time. I just want to have some fun. And you know, there's always a way to change the way that you look at your situation if you're willing to. And a lot of that is just being willing to do the work and willing to reach out and just, you know, being willing to go on that difficult journey to change your ways and change your behavior and change your mindset. If you want to feel better, you know, it's ultimately up to us.

[00:42:53] Madison

If you ladies want to share any concluding thoughts that you have or resources that you'd like to share that have maybe helped you or even just your social media handles. If you want, you can share.

[00:43:06] Jessie

Yeah, This is Jessie again. I will definitely share my social media. My handle is Jess Wo Jess W O, I also have a podcast called The Badass Blind Babe Podcast, which you can listen to on Apple, Spotify. It's on YouTube, so whatever works for you. And I just really want to, you know, leave you guys with the message that I've said multiple times that you can't always control what happens to you in life, but you can control how you react to it. And I really hope that everyone listening. Here's that and that resonates with them. And I hope that you do everything in your power to go out there and cultivate a great life for yourself because it is 100% possible no matter what you're going through.

[00:43:51] Mojgan

It's very interesting to be in a space where I know I can say all kinds of weird stuff and people will actually understand me. So I appreciate that. I'm thankful for that. And I just wanted to share this, that back in Iran before the 1979 revolution, um, one of the they decided the Ministry of Education decided that they are not going to name the school for the blind in Iran. They're not going to name it the school for the Blind, but call it the school for those with light in their heart. Roushandel with light in their heart. And back then I didn't really understand their significance. But today I do.

[00:44:48] Rusty

Thank you to everyone today, and thank you for making me do this. And by say making me mean it's I'm not a morning person. Um, but it's absolutely beautiful to be able to reconnect with some of my oldest and dearest friends and meet new people and hear the stories of other people going through their different journeys. Um. And yeah, it's sort of I've woken up this morning now and my brain's awake. Do you know what I mean? Like, my spirit is awake. Um. And I'm just very thankful for this opportunity. And I hope that. All of us talking today just gives someone out there that may be struggling on the verge or having lived with some kind of visual issue that it's not all doom and gloom. It really isn't. And for me, it's just become a part of life in the family. It's a joke. You know, if friends it's a joke. We make jokes. And but it's also very serious at the same time, you know, and they know that it affects me mentally and physically and. But. In the long run. I know it sounds like a cliche, but we are not alone. You're not alone. And programs like this, I hope, show people that. They can reach out and there's resources and everyone's going through their own journey, but we're all together.

[00:46:19] 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 podcasts 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.

END OF TRANSCRIPT