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35. "Out of Sight, Not Out of Mind" (feat. Rose West)

  • Writer: Marissa Nissley
    Marissa Nissley
  • Nov 10, 2024
  • 19 min read

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Transcript


Marissa: As someone who was born with low vision, I often like to say that you can't miss what you never had. I don't care that much about seeing the color of people's eyes or leaves falling from a tree or a perfectly crisp sunset because I've never really experienced those things. This blurry reality is all I know. But what happens to those who become blind? 


Joining me today to answer that question is Rose Sarah West, a junior at Swarthmore University who rather unexpectedly and suddenly lost her vision at age 12 due to a brain tumor. Stay tuned to hear us talk more about coping with vision loss and embracing the blind community.


Intro Music 


Marissa: Welcome back to another episode of Blonde & Blind. As many of you may know through social media, I recently underwent a rebrand, so I'm still getting used to saying it, but welcome to Blonde & Blind. I'm really excited to have one of my teammates at OSB AmeriCorps Rose West. Thank you so much for joining us. So to get started, why don't you just tell us a little bit about who you are, what school you're in, what you're studying, what some of your hobbies are, and what the world looks like to you. 


Rose: Yes. Okay. So I am a junior at Swarthmore College. It's a little itty bitty liberal arts school in Pennsylvania, and I'm studying political science. I have a beautiful chocolate lab guide dog named Nara, who is my entire world and literally my identity. 


Marissa: Smalls and Nara actually have met before for any listeners who might be curious and Smalls wasn't really into Nara. Like Nara kept trying to play with her. Nara rejected her every time. 


Rose: Nara was trailing behind like “please notice me.” And Smalls was just like, “girl, what are you doing?”


Marissa: To be fair, I got paired with a very antisocial guide dog.  Okay, so what does the world look like to you? 


Rose: I tend to identify as functionally blind and say that I function as though I am totally blind, but like many blind people, I do have some vision. So I have no light perception at all in my right eye and in my left eye, I have pinprick central vision. When I talk with sighted people, I oftentimes describe it as looking through a Cheez-It or a really thin straw. And then I also have Charles Bonnet syndrome. So I have a small little visual release hallucination type thing. That's just a bunch of weird little colors and circles and patterns and little critters, overlaid on part of my vision. And then I also have this thing from my Charles Bonnet where I have like this rainbow strobe that will be over kind of the area where I can see a bit. 



Marissa; So I know a lot of people will think that when somebody is blind, it must look black, but it doesn't look like that for you. \


Rose: No, and I've been thinking about that recently because as I said, I have no light perception in my right eye. And again, in theory I would be like, “yeah I see black,” but there's also no depth to it and there's no like anything to it really. So figuring out a way to kind of describe that has been a journey. 


Marissa: Right. Because it's not just like closing your eyes or putting on a pair of sleep shades. 


Rose: I'm not even sure if it would be the same as people who've used contact lenses that are kind of like blocking their pupils out. ‘


Marissa: That’s creepy. Contact lenses freak me out. The whole reason you're here is to talk about vision loss. So what was your experience like losing your vision? 


Rose: So I was born fully sighted and I lived life fully sighted up until I was 12 years old. And then over that year, it was 2016, I began to lose my vision without realizing it was happening. So I have no congenital disorder. I have no known eye disease. I had what I like to call acquired blindness because I had a brain tumor at the time. Over the span of maybe six months from when I first noticed my very first symptom to when I was diagnosed, I slowly lost some vision. But I didn't have any idea I was losing sight because it was, again, very gradual. So a lot of it was like standing up and having really bad floaters in my vision or having trouble focusing my eyes.


Marissa: What are floaters? 


Rose: I mean, I don't know if I'm actually using the term clinically, but I kind of describe them as those like pressurized visual spots people get when they press on their eyes. 


Marissa: When did this all happen for you? 


Rose: This happened back in 2016. I was 12 years old in seventh grade. 


Marissa: Wow. That must have been so hard. I feel like seventh grade was a really tough time for me. And I was just a normal grumpy teenager. I couldn't imagine also having to deal with a diagnosis of brain cancer. 


Rose: Yes. So I was gradually losing my sight, but I had no idea. And then there were a bunch of other symptoms. Like I had this pulsing sound in my ears. I was getting really dizzy. I ended up having like part of my face go numb. They referred me to a neurologist, but before I had that appointment, I lost the vision in my right eye. I was sitting on the couch watching Dance Moms and then I blinked and I was like, “Oh my God, what just happened?: So that led to an emergency room visit. And then I didn't realize how big a deal sudden vision loss was at the time. And that it is always a medical emergency. So I was confused and was like, “when am I going home?” And then I ended up being in the hospital for four weeks. 


Marissa: And you had surgery eventually, yes? 


Rose: Yes, two days after my diagnosis. I think my surgery was eight hours long and I went in with no sight in my right eye, but I don't know exactly what happened with my left eye. Neither do my doctors. Generally, there's an idea that during surgery, the pressure in my brain did not decrease. And because of that, the pressure led my optic nerve to continue to atrophy. 


Marissa: Wow. So you woke up after that surgery and then pretty much the vision you have now? 


Rose: Not entirely. It was kind of like a gradual change that again, I didn't really notice. I think my parents noticed it first because I was playing a lot of Uno in the hospital and I started getting my colors mixed up. And then I was having more trouble like noticing things, picking stuff up visually. And eventually we did a surgery on my right eye to try and loosen the pressure on my left optic nerve. So they essentially cut my right eye off from the rest of my optic nerve. 


Marissa: I know one thing you've talked about a lot in our OSB AmeriCorps program is the stereotypes surrounding sight loss and what people expect someone to look like or feel like if they are going blind. Could you talk a bit about those stereotypes and how your story is different from that? 


Rose: Yeah, of course. Statistically, the majority of people who end up being blind are over the age of 65 and eventually lost their sight over time due to external factors. And it makes sense because as you live more life, you have more opportunities in a sense to be inflicted with blindness. 


But for me though, I was 12. And I was thus surrounded by a lot of people who were born with vision impairment and who were born blind or who've known that they were visually impaired for a while. So I kind of felt out of place in that sense that a lot of the resources and opportunities and discussions around sight loss were aimed towards older age groups. And a lot of the assumptions about people in younger age groups is that we have been born blind or we don't remember vision or we've just kind of always been this way. Whether born that way or not, they're just like, “yeah, you're blind. You don't know what vision is.”


Marissa: The other thing too, we've talked about a lot, the two of us is also how there's this idea that you're supposed to look blind.’


Rose: I mean, I was sighted once and I think even I held this assumption that blind people's eyes physically looked a certain way. I feel like I've noticed in the media that whenever there is a blind character, typically they're kind of coded as having glaucoma. So like the very pale, milky eye type trope. For me, I was socialized as sighted because I was sighted up until I was about 13. And then, I have nothing organically wrong with my eyes. The problem is like the connection to my brain. So a lot of times I look as though I'm sighted. I make eye contact. I tend to track stuff with my vision or I'll look at my phone, even if I'm not seeing what's on it. And there's always that assumption at first when meeting me that I'm sighted. Sometimes even when I'm asking someone for directions and my guide dog's right next to me. And I'm not sure again how much of this is because I pass as sighted and how much of it is just that visual people can be very silly.


Marissa: Another thing is this idea that like many people see blindness as one of the worst things that can happen to you. There have been some studies for instance that have shown that people are more afraid of blindness than like losing their hearing, speech, memory, or a limb. What was that like for you going through something that most people consider like the worst thing that could ever happen to them? 


Rose: I think again, there were so many emotions involved with my sight loss. A lot of times I was like “why is this happening to me?” I don't think at the time I really compared it with other disabilities or anything like that. But I do have this memory of like elementary school cafeteria games, would you rather type stuff. And one of my friends was like “would you rather be deaf or blind?” Because those people are so exotic and rare. And at that time I was like, I'd rather be deaf because I was a very visual child. I loved to draw. I was really into a lot of crafts, artistic stuff. I wanted to be an artist when I was really little. 


So there was this immense sense of grief. And I would like to say that the sense of grief is totally resolved, but it's always kind of there in different moments still. I don't cry about my blindness every single day, but it definitely can be hard or upsetting in that way. However, I feel like I've come to accept it day by day.


Marissa: So that was going to be my next question for you. Normally, when we talk about vision loss or really any kind of loss, there's this idea that you learn how to cope with it and then eventually you get over it or you accept it. But with many things, it's not always linear. So what was that process like for you? 


Rose: I really struggled at the beginning and then I, there was a lot of crying, a lot of getting very angry and frustrated, particularly as I was learning different skills, like a screen reader for the first time or certain ways to navigate like tactile graphics. 


Marissa: Did you go to a school for the blind? Or did you go to a training center after you lost your vision and recovered? 


Rose: I always remained in my public ed school. So I went to the same school from K to 12. And I basically just had my IEP. I started getting vision services immediately. Every day I had at least an hour–some days I ended up having more–of just learning tech, learning braille. In middle school, I didn't do any electives because that's when I was getting vision services. And seventh grade, eighth grade, I didn't even go to class too much because I would get really overwhelmed and have anxiety attacks. 


I was in therapy. I've been in therapy ever since. And that I think provided a certain level of like support. But there's also this dynamic of everyone who knew me, knew I had been sighted and knew the cause of my vision loss because it was discussed when I first got sick. There was an announcement to my entire grade that was like, “Rose West has brain cancer. “And that was really startling because I didn't have any choice in it. The day it was announced, I was out for brain surgery and I was not well known before my vision loss. I was very socially anxious my whole life. And  essentially never really spoke up in class. I was very much like, I suppose, wallflower-coded. It felt like a spotlight on me because I came back with a white cane and my school wasn't terribly big. So. It was just terrifying in that way. 


Marissa: And so when you're out in public, how do you think your relationship is different between those who've known you before your sight loss and knew you were once sighted versus just complete strangers? Or people like me who've only known you as a blind person? 


Rose: I think in some ways it's easier when people have only known me as someone who's blind. I think those people are oftentimes less likely to pity me in a way. Because a lot of times they see me as a blind person, yes, but they don't see me automatically as having experienced this tragedy and trauma. And for people who were with me during my trauma, I think for them, it was either just awkward or like constantly trying to readjust even after years have gone by and not knowing what's going to end up being in some ways offensive, I suppose. Or like not wanting to talk about visual things sometimes because they're like, “I don't want you to be upset that you can't do this” or talking about visual things and totally forgetting that I can't do it. It was definitely a tricky balancing act with those people and still is because I'm still in contact with some people from my high school. My family obviously knew me as sighted and now are still sometimes remembering that I'm blind. 


Marissa: And I'm sure too, especially with something like a diagnosis like brain cancer, there's probably this like, what if I had gone to the doctor about this earlier? 


Rose: Yeah, there's a lot of that. I've spoken with my parents before and they have a certain level of guilt because there was clearly something wrong with me after a certain while and there just wasn't the push to go to the emergency room or to see a neurologist. I kept going to my GP and kept getting normal diagnoses you'd expect to get from a GP, like ear infections or Lymes disease. I had like a blood test for that to see.  And I think it was something that feels so out of the realm of possibility for a person. I still a lot of times am like, ‘My gosh, that actually happened to me. That is wild.” 


Marissa: And on a related note, I know a lot of people say, “things happen for a reason.” And I know a lot of people with disabilities or chronic illnesses have mixed feelings about that. What are your thoughts?


Rose: I personally do not see what happened to me as having a greater reason. I think that I can take what happened to me and I can find a reason for it. And I like having the agency on myself, even though this was something out of my control, I can take that agency and I can find a reason for it if I would like to. For other people who are kind of seeking that sense of like, this happened for a reason. I. think that's their journey to kind of find and discover. 


But I really have problems when other people project it onto a person. and people say to me, “well, everything happens for a reason. You went blind for a reason. You had this trauma just for something greater.” 


Marissa: Rose, you're not blind, but you have vision. 


Rose: Yeah, I have so much insight. 


Marissa: So on that note about coping, What did you do during those first years to find ways to relax and de-stress? 


Rose: At first, I read a lot, just because, especially not knowing a lot of access opportunities at first, audio books were something I could do pretty easily. So I did a lot of reading. I used to try to draw a bit more after I first lost my sight, but as said, my vision got a bit worse and my eye strain got very bad and it just was too much for me on top of the grief to keep trying to do that. I found other creative outlets though. I'm big into writing now. 


I also have found connecting with the blind community to be really helpful. I went to a couple programs like in Pennsylvania, the tri-state area. There's a camp down in Avalon, New Jersey for young blind people. So I met some people there. I started getting more exposure to the blind community, making connections with people in the blind community. And I think there's something really special about having that space around you. 


Marissa: I think too with sighted folks, sometimes if they can't automatically think of a way for you to do something without vision, then the assumption is you can't do it. It's really helpful to have mentors who are slightly older than you and you can see them go through an airport independently or use public transportation. It kind of expands your realm of possibilities.


Rose: I was told really awful things about my sight loss, I've been told at least twice by people, “If I lost my sight, I would kill myself.”


Marissa: That's not a cool thing to say to somebody.


Rose: No, at one point, I think the person even meant it as a compliment in a really strange way. It's like, “Well, you're so strong. You got out of bed and you're still alive.” I mean, that's worse than all of the “how do you brush your teeth?” comments combined. What do you even say at that moment? It knocks you off your feet. 


Marissa: Absolutely. And I know as we're talking about this concept of acceptance, I know for many blind people there's this kind of struggle because sometimes our frustration and our anger and our sadness comes from inaccessibility and the way society is built. But then there's sometimes where you just want to see things. And I personally don't feel the latter as much because I was born with the vision I have, so I don't really know what I'm missing. But what's that like for you?


Rose: There's a lot of stuff that I'm just like, “I wish I could see that.” I mean, I'm not a parent or anything, so I’m not like, “I wish I could see my child's face.” But I have a lot of empathy for those blind adults who are in that position. For me, it’s natural beauty. When everyone's like, “my goodness, that sunset is beautiful.” And I can remember a sunset but I'll never get to see one again. Or when I have to play two truths and a lie, I'll be like, “I saw the Aurora Borealis” but I never gave. That's something that's so cool that I wish I would have been able to experience. 


Marissa: So one last point I wanted to ask you about coping and the narrative surrounding vision loss and acceptance is I know we've talked personally before about this concept of fighting blindness and fighting cancer and how often we see that in rhetoric, especially fundraising. And I know you said that you've had some problems with this. Could you elaborate on that? 


Rose: Yeah. So I like to call it battle rhetoric. There's a separate perspective I see on the blindness and cancer front. With cancer, like I identify myself as a cancer survivor, but there's kind of the idea that if I won my battle with cancer, that I must have worked for it. And I feel like that reflects just so cruelly on people who have passed away because of cancer. Like they lost their fight with cancer. And I'm like, “no, it happens.” I feel like it gives too much power to the disease in some ways. And I think that it's just really sometimes tasteless. 


As for the idea of fighting blindness, I don't identify myself as a blindness survivor. There's no end to blindness for me. I live with blindness every day and I'm not trying to actively look for a cure for any reason. I mean, there are many people who want to cure blindness for whatever that reason may be. I feel like the goal shouldn't be curing blindness because it ultimately is a symptom of something. There are many different causes. Like I've had tons of people say, “Hey, you know, there are these glasses and stuff that cure blindness when you wear them.” Those won't work for me. 


And I mean, I, if people want to have their blindness, cured, their symptom of blindness, that's like they're right, but again it's not curing blindness, it's curing cataracts. Or curing this vitamin deficiency that has other influences on a person's life. Like, it's never blindness to me. Fight brain cancer. Yes, do that, but you're not fighting the blindness that resulted from my brain cancer.


Marissa: Right, and only one of those two things could have actually killed you. 


Rose: Yeah, I mean, in some ways I'm very grateful for only being blind. I don't want to be like, “it was either go blind or die.” It's not entirely that, but just that there are so many different things that can happen with a brain tumor. And again, that's something I'm really interested in talking with people more about, because as someone who's in the childhood brain tumor community, all of our stories are really different. And for me, it's like, I have significant vision loss. And for other people, they have no real short-term memory. And it's just so different across the board. like, let's focus on the root causes. Let's not see blindness, which is again, just a symptom of something else, as like this big bad when again, it's something that doesn't ruin lives and that is, you know, something people can live and function around. But it's also like, let's prioritize access to healthcare. Let’s make sure that people who cannot access cures for their cataracts because of the broken healthcare system are able to get that. But for me where I'm like, I've kind of come to terms with this existence that I'm in, I'd rather people not look for nerve regeneration. I'd rather them focus on ways to prevent situations. 


Marissa: And a lot of it too is that people don't have access to preventative care. There are several chronic illnesses like diabetes that can lead to blindness if they aren’t well-controlled. I mean, there's a lot of other root causes. Blindness is ultimately a sensory difference. It's a symptom and it can come about in a lot of different ways for people. It can be traumatic, but it isn't always. I read an article by Andrew Leland, the writer of The Country of the Blind, where he framed it as becoming blind rather than going blind. 


Rose: Yeah. I've thought about that too. You and I had the opportunity with a couple of our other service members in our AmeriCorps position to sit down with Kimberly Dobbs, who is a blind psychologist working in Philly. And one thing that she kind of provided was this idea of “is blindness happening to you or is blindness happening for you?” And that's something that's really stuck with me in my head since then. Because I think that there's a certain level of like reclaiming in the idea that like blindness is happening for me. I'm not being subjected to going blind. I'm not having blindness coming from some external force and like, “hi-yah!”



Marissa: I think a lot of this comes back to this idea of wanting to find control. And to an extent it can be empowering, especially with blindness, right? I mean, blindness isn't a tornado that's going through your house and destroying all of your items that you can't do anything about. You can learn new skills. You can meet people in the community. But then also our bodies aren't perfect. Sometimes unexpected and undesired changes happen to our bodies. And it's really hard to learn how to accept that and realize that it's okay to not be perfectly happy with your body at all times..



I really think body neutrality is such a nice framework. I feel like there's so much pressure on us to be completely accepting of it. Or really any aspect of our body, just to be completely 100% happy with the way we look, the way we function, the way we are. And sometimes it just doesn't happen for people. 


Rose: Sometimes there's pressure from inside the house, inside the blind community, because if we give off the impression to sighted people that we're unhappy, that we're discontent with our blindness, we're kind of being told that that's reflecting on the rest of the blind community. So you have to give off the impression that you are fine, you are living life to the best of your ability, you're thriving. And it makes it so like we can't really talk to sighted people and be like, “no, like this is kind of annoying for me right now.”


Marissa: And especially about those things that are annoying because you can't see them. Not because there's some access issue. 


Rose: I mean, I think both can be totally irritating, but like, yeah, sometimes I just would like to be able to see something. 


Marissa: If you could go back in time and give advice to 12 year old Rose or really any kid or young adult in a similar situation losing their vision, what advice would you give them?


Rose: I think I would say that there's no timeline. There's no time when you have to be okay and you have to have accepted it. And it's important to kind of reject that as soon as you can. Because I know for me, I kept being frustrated at myself for not being over it and kind of beating myself up like “my gosh, how am I still this upset about it?” 

And again, we live in a society that's like, “get over it, keep moving.” But it's okay just to have those days when no matter how far out you get, you're like, “this hurts me today. And it feels raw today.” And knowing early on that those days are natural and they don't reflect on you as a person or your ability to continue on in life. I think that is something that I want anyone kind of going through vision loss to know. 


Marissa: That's really powerful. Thank you for sharing that. Anyways, thank you so much Rose for joining me on my podcast. It's really cool to be able to collaborate with people that you've worked with or served with.


Rose: Yes, thank you for having me.


Marissa: Well, everyone, that was my amazing friend and former teammate Rose West. As we mentioned, we've met through OSB AmeriCorps, which facilitates a free virtual mentorship and work-readiness program for blind and low vision students in Pennsylvania, ages 14 to 24. So if you're in that age range, I highly recommend you check it out. It's a great opportunity to have a mentoring relationship with someone who's been in the same position as you, but is a little older and a little wiser.


If you enjoyed today's episode, make sure to subscribe to Blonde & Blind on Spotify, Apple Podcasts, Google Podcasts, and anywhere else you get your shows. You can also stay up to date by following me on social media at @BlondeBlind on Facebook and LinkedIn and @BlondeBlindGirl on Instagram. We had to change up the name a little bit. @BlondeBlind was sadly taken on Instagram. You can also find the transcript, show notes, and other information on my website, blondeblind.com. Thank you all for watching and I hope to SEE you soon.



 
 
 

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