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Episode 6: Jenny

Andrea: Just a quick warning, this conversation includes discussion of suicide. If you are experiecing thoughts of suicide or if you just want to talk, you aren’t alone. To reach the National suicide prevention life line call 800-273-8255. 

Ok here’s the show.

 

Jenny: At the end of the day, I think my blindness, it's something that I'll never be able to fully understand, but just accept the fact that this is a part of my life now and not look at it in a negative way and look at it as another opportunity to grow as a person.

 

[Music]

Andrea: Welcome to Getting Thru - I’m Andrea Sonnenberg.  

I was reminded of the loss of my son and how difficult it is to understand his passing while listening to Jenny talk about how difficult it is for her to understand losing her sight. 

It is so natural in horrible situations to ask why? Why me?

But you can’t stay inside those questions. Dwelling on the unanswerable makes it impossible to survive.

And Jenny doesn’t occupy herself with her blindness. She is moving forward, using her experience to help others, a goal that also resonated personally with me. 

After I spoke with her, I felt like anything was possible.

Jenny: Well, my name's Jenny De Los Santos and I'm 21 years old and I am currently studying psychology at community college and hope to transfer soon.  have three younger siblings. My parents are from my mom is from Guatamala and my dad is from Mexico. 

 

Andrea: Jenny lives with her family in the San Fernando Valley, she is very close with her parents, her three younger siblings and her grandparents

Jenny: And I hope to transfer to San Francisco State in fall of two thousand twenty two and get my master's there and then hopefully transfer get my bachelors there and then get my masters at a four year after that. [00:41:22][30.6]

Andrea: Music is big part of Jenny’s life

Jenny: I play music and I listen to music, so I sing a little and I play 11 different musical instruments. [00:53:35][11.3]

 

Andrea: But her main focus right now, is her goal of helping others who have also lost their vision.

Jenny: Yes, definitely. I want to be a therapist for adolescents, but also I want to. Kind of build my therapy around for people who are going through or have gone through the vision loss and haven't been able to really fully cope with it. 

I think that's something that I would really I would enjoy it. And because I've actually gone through that. And I hope to help people overall

Andrea: Jenny’s eyes have posed a challenge her entire life.

Jenny: to kind of give you a background. I have - I was born with glaucoma and an eye disease called Peter's Anomaly. And basically that just really messes with my eye pressure and it puts a lot of other things at risk. And when I was born, both my corneas were being rejected. My body was rejecting both of my corneas. So I went into surgery right away. So they were only able to save one of my corneas. And so in result of that, I had two different colored eyes. One was like a bright blue and the other one was like a darker regular, I would say, like a regular blue. But the other one was like really bright.

Andrea: It wasn’t until elementary school that she felt she was different.

Jenny: So the kids would call me zombie eyes. They would make fun of me. They would stare at me and I could see them staring at me because I did have a lot of vision left over on my, on my good eye because I was. I could see fully, fairly well on my left eye and then my right eye. I was completely blind so I could see them staring at me. I could see them make fun of me. And they started calling me a lot of names like like I said, zombie eyes and-- 

Andrea: Kids can be so mean. 

Jenny: Yeah. Very. but my parents always taught me to kind of brush that away.

 

Andrea: How were you able to do that? 

Jenny: Um being in a Hispanic household in that culture, I think they really wanted me to brush it off and, you know, kind of keep moving forward, keep my head up. So they never really.. I don't want to say they let it happen, but in a way, to some extent they did. They just kind of they they just assumed that I was a really strong person and that I could deal with it because that's what I put up a front as. But there was a sadness there that I didn't really face until later in my life. [00:19:30]

Andrea: In Seventh grade, Jenny’s vision took a turn for the worse. 

That’s when my vision loss started. Yeah, I had a surgery, laser eye surgery specifically to bring down my pressure because of my glaucoma, and that caused me my vision to start to gradually go away over the years. 

Andrea: I'm wondering if you could tell us a little bit about what it was like to go from being sighted to being unsighted. 

 

Jenny: I think. Well, I know actually. Being sighted and then going blind. It's difficult to you know, to put it simply, but I would definitely say that the struggle was to not lose myself, which I did. I lost so much like I like physically and mentally. I just I just can't believe the difference, like, I was literally thinking about this the other day, like. I look back on all the all the relationships, all the things that I've lost just because of my blindness, because the world is so. A lot of the world is very ignorant, so I you know, it's really hard for me to lose myself as a person. Which unfortunately, I did, and and now I had to work through all that, [00:59:44][62.7]

Andrea: Becoming blind changed her relationship with herself and it changed the way other people saw her, even people in her extended family.  

Jenny:  it just kind of. Like, drowned everything else out. People don't see me as Jenny, the girl who likes to sing, the girl who loves music, it's just Jenny, this blind girl

And so people tend to forget that I am a I am a just a human, just like everyone else, you know. So people tend to forget that about me. And they they they eliminate all my other qualities and and just kind of they're not able to overlook my blindness and just be like, oh, she sounds like a really cool person to hang out with. It's like, oh my God, blind girl. I'm not even going to approach, you know. So it's very it makes me feel very small too, like I'm never going to be able to fit their expectations. [01:10:52][77.8]

 

Andrea:  Dealing with of all this was mentally exhausting.

Jenny: I started to self-harm in middle school because I wanted to feel the physical pain because I was so broken inside. I wanted to match what was on the inside to the outside. So that was a really unhealthy coping skill for me. [00:22:04][24.5]

Andrea: How did you get help with that or did you get help with that? [00:22:12][4.0]

Jenny: Did not until high school. I was also really good at hiding it. So no one was was alerted to be like, oh, like we should get her help. So, yeah, I was until high school when I finally reached my breaking point and I decided to speak up for myself and ask for professional help. 

Andrea: Jenny remembers the first day she asked her mom if she could go to therapy 

I was in high school and I was doing some Spanish work in my Spanish class and I was reading my Braille Spanish book. But I was super frustrated with the fact that the whole class was like finished with the assignment that was given to us. And I was still reading liberal book because I had to learn Braille at a really late age because of my vision loss. So I was fairly slow. And to make it kind of simple, Braille is like a whole different, I wouldn't say language, but it's like a code. And so for English, there's a specific code for math. There's a specific code that you have to learn for Braille. Same thing with Spanish and music. You know, if you read music, you got to learn a new code. So I was still learning Braille in general and then I was learning Spanish at the same time while I was taking Spanish. So I just remember getting really frustrated. I closed my book and I shoved it like off the table because I was I was so fed up and I'm not usually physically aggressive like that in any way. That was just that's that's how much it was hurting me, because I literally pushed my book off my table. 

And I went home that day and I told my mom what had happened. And I told her, mom, like, I really need help. I was 16 at the time 

[music cue]

and I said, I really need help. I can't I can't do this anymore. I think my vision loss really. Really affected me in a way where I can't deal with anything anymore and I need to face that now. I know I know that you guys, like my family, has put me up on the platter to be really strong and really able to deal with all these feelings. But really, I can't and. Being my mom and the supportive mom that she is, she was like. She definitely expressed her opinions, she's not big on therapy. I think that's a cultural barrier there. She doesn't understand why I would want to go and talk to a stranger essentially about my feelings. But she was willing. [00:25:18]

Andrea:  Jenny often thinks about the stigma surrounding mental health.

 

Jenny: It's always going to be there. But specifically in the Hispanic household, it's super like. Oh like get over it, that kind of thing. There's people who have it worse than you 

It’s something that my parents know that I hate hearing and I told them. There are people who have it really, you know, difficult but I'm my own person and they are them. And my journey is my journey. I don't want to be compared to any anyone else. [00:27:49]

 

Andrea: In spite of her initial skepticism, Jenny’s mother teamed up with a school counselor to get Jenny treatment from a therapist. And Jenny needed the support - because this period in her life brought a cascade of difficult challenges. 

 

She was dealing with the typical teen issues, was learning to live without her sight as well as coping with the stigma surrounding her loss of vision. She was bullied online and at school. She was experiencing depression and panic attacks.

 

Jenny:  my official diagnosis is major depressive disorder with psychotic features. And I do have PTSD. [00:28:09][6.7]

Andrea: And who who diagnosed you and about around how old were you when that when that happened? [00:28:14][4.0]

Jenny: I want to say I was around 17 or 18 when I had I had the psychotic features added. I was I was diagnosed with major depressive disorder when I when I was like 16, 

Andrea: What does that mean with psychotic features? [00:28:36]

Jenny: Well, for a period of time, it's like I'm going to say my last two years in high school, I, I heard voices in my head and it's really hard for me to explain. But the best way I can put it is like it's like a robot's voice. And I say that because there's no gender for the voice and I can't tell whether it's a male or female. And I don't recognize the voice. It's just like this really distinct. Voice And they told me really negative things like kill yourself and you're not worth it and it was a lot.

The voices, when they first started up, I was like 17 and when they first started, I was like, what is going on? Like, what am I hearing? And I remember the first time I heard them, I was in my room in the dark. 

And it was just me sitting in my laying in my bed and I was like, what's going on? And then I just remember them. It was like multiple voices in my head. And they were just telling me, like. You know, kill yourself and you're not worth it. That kind of thing, which is a lot of what I was cyber bullied about. So I think that's maybe where it came from. I'm not really sure where it came from, but. Being in that moment and listening to those voices, it was. I almost felt like not a human. Like, what's what's happening, what am I supposed to do at this point? And then the voices were a lot of the time the reason for my suicide attempts

Jenny:  So, in total I had six suicide attempts. I was hospitalized five of them. 

Andrea: Oh, wow. 

 

Jenny: Yeah. And I think it's when I was gonna do it, I. I was so lost and depressed and I couldn't find a way of. Of really ending all the pain other than ending everything else. And that led from self harming to like to the suicide attempts, I think it was such a. It was such a really dark place for me that I couldn't I couldn't even think about like everything else that I was letting go. So when I was hospitalized for every of those every other suicide attempts, the first two were were really, really helpful. The treatment in the hospital, I have been to notice a difference in the treatments from when I was an adolescent, when I was an adult. 

 

Andrea: In what way? 

Jenny: When I was a teenager and I was hospitalized, it was super. Super interactive, very productive. You know, the doctors were constantly willing to help you and and, you know, the whole environment in general just seemed really, really well rounded. 

Andrea: But after she turned 18, she was being treated as an adult and the type of care changed.

Jenny: I mean, I guess I get the whole like, you know, you're an adult now. You can choose whether or not you go to you participate in the treatment that they're getting. I can see that. Right? But I had the option to to participate in the group therapy that they were doing as an adult. And me being the really depressed and suicidal person I was, I didn't want to get out of my bed. So I just wanted to stay in my bed and sleep the whole time. And it got to the point where I just I I'm not I don't say this with pride, but I I lied myself out of two of those because I just didn't want to be there. I basically said I was OK and which I wasn't. That's why I ended up going back there. [01:03:59][187.6]

Andrea: And what do you think that the hospital could have done differently? [01:04:02]

Jenny: Be more pushy. People need that motivation when you're when you're stuck in in an abyss of motivation like there is, you need a little bit of a boost, especially if you're going to get professional help. I mean I remember just not wanting to get out of bed, not even wishing that I hadn't woken up, you know, and when I you know, I do recognize that, you know, I have to put in my part and stuff. But when you're in like a really like in a professional guidance kind of environment. I really needed that push and I didn't get it. [01:06:24][2.9]

 

Andrea: And what was that for you? What got you to that point where you were willing, since you weren't willing to do it when you were in the hospital, how did you ultimately get to that point that you were willing to do it, do the work and get yourself healthy again? [01:07:08][15.8]

Jenny: Good question. I think. My main. My main goal was to be a therapist since I started struggling mentally. And that was my motivation. But. When I was sitting in that hospital room and I was like, God, I'm never going to get out of here because there were those moments, you know. I just remembered, like, if I don't get out of here, how am I going to how am I going to let my family know I'm OK? Because, you know, communication is very limited there. Um, how am I going to let my friends know I'm OK? How am I going to be able to help anyone and tell them let them know that I'm OK so that they can be OK. And give them that hope that maybe one day they'll be OK to, you know. So that was that motivation for me, just helping people. [01:08:11][57.2

Andrea: Jenny started to make progress. But, of course, having motivation is only part of the equation. She has participated in individual and group therapy and a form of trauma therapy called EMDR that helps to reprocess and reframe traumatic experiences. She was also prescribed antidepressants and antipsychotics

Jenny: I want to say that the antipsychotics definitely helped the voices. The last time I remember hearing the voices was when I was like around 18 or 19 years old. I'm 21 now and I haven't heard them up until this point. So they definitely help. And I think in terms of the medication for the for the Depression, I think this goes with every other medication. But I had to put in the effort. I, I think when I first started the medication, I relied on a way too much to just be like taking them. And I'd be like, OK, well, hopefully I'll be better one day. But I eventually realized that I had to put in the effort to. And not just rely on medication. [00:34:32][45.8]

Andrea: So what is that effort that you have to put in [00:34:36]

Jenny: lots of therapy and lots of coping skills and learning to take care of yourself, self care overall and just being able to set boundaries for myself? [00:34:50]

Andrea: Figuring out those boundaries and self care is hard. Jenny is still learning to navigate the way people treat her as a person who is blind. 

 

Jenny: especially when, like I said, I'm in those uncomfortable situations with friends and family that I don't fully interact with. That's when I use my coping skills mostly. [01:20:19]

Andrea: Jenny listens to music, she threads beads onto string, she has an aromatherapy diffuser that calms her, and she often plays with a fidget toy. How often do you have panic attacks, do you still have them and how often do you have them? [01:21:15][4.9]

Jenny: I do still have them, but not as often as I used to. I think about three months ago, I would have told you that I had panic attacks like three to four times a day. [01:21:26][0.3]

Andrea: Yeah that’s a lot better what would you say is the reason you have less panic attacks now than you used to

Jenny: I'm building my tolerance for uncomfortable situations, very hard situations that I wouldn't be able to put myself in like last year or something, you know, going to family gatherings that I don't necessarily enjoy myself at. Just I'm at the point in my therapy where I can do that and it won't, I can manage. [01:22:44][25.8]

Andrea: : One thing that helps her manage these days is something called a butterfly hug - when you place  your hands crossed over your heart, 

Jenny: [00:37:55] Well, in the therapy session, it would be like they my therapist would ask me to bring up a memory from my past that really makes me uncomfortable. That gives me a really disturbing feeling throughout my body. And he would have me analyze that that scenario, talk about the emotions that it brings up for me. And I would just close my eyes and I would do the better the butterfly hug and I would tap for about a minute or so or however long I need to, and then take a deep breath. And then we would talk about it and what what feelings and what thoughts came in throughout that time. [00:38:37][42.4]

Andrea:  Another pivotal experience for Jenny was spending time in San Francisco at the Hamptons Center for the Blind which teaches independent living skills like cooking and technology. She was also able to make friends with other people who have lost their sight. But it was learning to go places on her own that made Jenny feel like she could do anything.So just being able to travel on my own was a really big empowering feeling for me. during class time, we would go out and we would practice a certain route, whether it'd be whether it be to the grocery store or like the local pharmacy or something like that. And we would practice those routes and we would practice taking public transportation like bus and BART. 

So I think that would be the highlight of the whole center in general, because I think once you got that in the bag, you know what's stopping you really? [01:18:17][81.4]

Andrea: : And Jenny really does seem unstoppable! Despite her challenges, she is doing well. She has friends and close family who support her. She is studying to fulfill her dream of helping others. She is no longer on medication and was discharged from therapy this past summer. You think through all the work that you've done, you found yourself. [00:59:55][3.2]

Jenny: I want to say I'm on that path. Yes, I really am. I to two or three years ago, I couldn't tell you that I actually like myself. I don't I'm not comfortable with saying I love myself yet, but I know that that's where I'm headed because I do like myself now. [01:00:14][16.9]

Andrea: And have your parents, have they changed their opinions about therapy and mental health support since you've gotten the help that you've gotten? 

Jenny: They're more they're more understanding of how mental health can affect someone.  I wouldn't say change their opinions, but I think they're more willing.

Andrea: When you picture success for yourself, what does it look like? [00:42:18][3.5]

Jenny: Um. Success for me, I think success for everyone looks very different, but I want to be able to finally be. OK. With who I am and be happy about who I am and I want to be able to not necessarily accept my blindness, because at the end of the day, I think my blindness, it's something that I'll never be able to fully understand, but just accept the fact that this is a part of my life now and not look at it in a negative way and look at it as another opportunity to grow as a person. And I want to be able to just be happy with life and not be so, so negative about. About my blindness, I feel like for a long time, I've been blaming my blindness for every little bad thing that's happened in my life. I want to just be able to. To be successful as a therapist and be able to have people overlook my blindness and because I feel like being a blind therapist is something that I don't really have a lot of, like, I don't know much about that. I don't know anyone who is blind and a therapist. I'm sure there's one out there, but I haven't interacted with one myself. But I want to be able to just be a therapist and not have people slap that other label on there. And I want to be able to you know, my dream is to have a family and live in San Francisco and just. Just be at peace, [00:47:17]

 

Andrea: So what advice do you have for others that are struggling in similar ways? [00:56:24][3.5]

Jenny: Don't underestimate yourself. I think. One of my two favorite things that I really like to tell myself all the time is every single day is an accomplishment. I think finishing up a day is like a really underrated accomplishment because like, you know, when you're struggling and you're going through the day and you're laying in bed and you're like, oh, like, I got through that and or people just fall asleep and you don't really soak in the fact that you got through that. And that's that's a really huge accomplishment, in my opinion. So, you know, just like don't underestimate your accomplishments and just appreciate everything, the good and the bad, because at the end of the day, that's what really makes you who you are. The other thing would be like, 

two negatives make a positive. I, I, I really rely on that saying a lot, because if you focus on the negative, not focusing on the negative is obviously unhealthy a lot of the time. But if you learn to appreciate it in a way where you know, you can turn that into a positive, being negative about negativity doesn't get me anywhere. So I just appreciate both good and bad. 

Andrea: what gives you hope? [00:45:05][0.8]

Jenny: I think it's definitely my. My commitment to helping people overall, because if if I wouldn't have survived all of my suicide attempts, I wouldn't have. Overcome self harming, I wouldn't be able to sit here today and be telling my story and help and help people who are struggling today. I think that's a really big thing for me. I really my heart is like set on that [00:45:42]

 

 I want to thank all the guests who were kind enough to trust me with their stories. 

This is the last episode in our first season. We will be back for a second season soon.

Getting Thru is produced by me….

In the Spotlight: 
Episode Featuring Jenny De Los Santos