- All right, you are
obviously from Florida. I'm not, you're much tanner. (both laugh) I don't know. - I may spend a large
amount of time on the beach. - You do? Okay.
- Yes, I do. - Are we recording? - We are recording.
- Oh. Don't have that part in. - Why not? That's an awesome part. (both chuckle) - Okay. - You ready? Are you ready for this? - Yeah, I'm ready. - How do you feel? - I'm feeling excited,
a little bit nervous, but I'm glad to be here. - We haven't met in person since 2017. It's been about half a decade. What has changed since we first met? - Ooh, a lot's changed. - When you tell somebody
that you have schizophrenia, how do you want them to react? - I want them to not be afraid of me, and not to look at me any differently than they had looked at me before. - Did you ever go back and watch
that first video we filmed? - No. No, I don't. - Why not? - It's difficult to see me like that. 'Cause I was very struggling
with a hallucination during that interview. I remember looking at the Comment section, people were like, "Why aren't
they looking at the camera?" Having a hard time, like
looking your direction, I was struggling with that hallucination. But also as someone who's autistic, I've also struggled with
giving eye contact in general. Like, I feel like I'm hyperaware of like, "Am I giving too much eye
contact? Not enough eye contact?" No, you know? 'Cause it's like... So I was really struggling
in that interview. - How often do you hear voices? - My hallucinations are almost 24/7. It's something that I just
have learned to live with. - In your original video, you said that you experienced
hallucinations almost 24/7. - Mmh.
- Is that still the case? - So it's been a long road
on my schizophrenia journey. For me, now, I don't
hallucinate 24/7 anymore, which, like, when we
had our last interview, I honestly thought I was
gonna hallucinate 24/7 for the rest of my life. Like, I had just been like, "Okay, this is my life, whatnot." But now, I do still struggle with some of my auditory hallucinations and visual hallucinations,
but it's not 24/7. It's more when I'm struggling with being, like, stress
that often comes up. - You went from experiencing
hallucinations 24/7 to now you can go days without it. - Yeah, and honestly,
like, I'm very fortunate. I know that's not the case with everyone who lives with schizophrenia. - I know that whatever you did to decrease your hallucinations
won't work for everybody. But can you just give us the play by play of how you got to the place you are today compared to when we first met in 2017? - Yeah, so when I was
struggling back in 2017, I was still figuring out the different treatment
options that were right for me. Also back in 2017, and
this is part of the reason I have a hard time looking back
at that original interview, is I looked very different and I was also struggling with,
it wasn't open at the time, I was also struggling with substance use. I was mismanaging my medication. And I think that's an
important topic to talk about when we are talking about people living with schizophrenia, psychosis. And talking about
different treatment options is to have that good
conversation with your doctor and only take your medication, you know, as prescribed the amount and when. 'Cause for me, I was
struggling with my medication on how it affected my sleep. And when you're someone who is a student and you're also trying
different treatment options that's affecting your sleep, well, that's gonna affect
your studies as well. Because oftentimes I felt like, well, do I be the
good patient right now, take my medication, go to sleep, whatnot? Or, do I be that good student, stay up, study for my test? Or, I was also an astrophysics student. Do I stay up and do that,
you know, telescope time? So, I ended up having this
unhealthy relationship of not taking my medication or taking too much of my
medication and whatnot. And it was a very unhealthy relationship. So, where I'm at now, is
I have a treatment routine that I stick to and I
have that consistency. I also have a better support network now. I have a lot of great
friends and colleagues that I lean and support on. So some of those changes
both come from treatment, but also come from learning
different coping skills that work well for me, and also
finding that support network that is there for me as well. And even if I don't experience some of my schizophrenia
symptoms that I did, you know, back in 2017, I am still someone who actively has schizophrenia. I still struggle with my hallucinations, maybe not as much, but I do. They are still something
prevalent in my life. There's also other symptoms
within schizophrenia as well, not just hallucinations. For right now, my
struggle with my diagnosis comes more in forms of, I
struggle with isolation at times, I struggle with scattered thoughts, I struggle with motivation, I struggle with depression. And that's become more
prevalent with my mental health than my hallucinations are now. - Why will you isolate sometimes? - Ooh, for me, I get into this mindset that I don't want people to see me. I'm kind of like embarrassed
of just my looks. I'm also, as I mentioned
before, I'm autistic and I have schizophrenia. So I also stim often. I'm someone who I sometimes
like hit my head like this, or I flap my arms and such. And I struggle with a lot
of internalized stigma there on just not wanting people to see. I didn't even want people
to see me stimming. And so when I'm having days
that I have a hard time passing as neurotypical, I
would sometimes isolate myself. I'm not saying that's
the right thing to do, I'm just saying that's
what I struggle with. But now I'm getting much
better at accepting myself and it's okay to stim openly. It's okay to not be masked or look, well, masked in like the... When you talk about masking and autism, it's about not hiding your symptoms. - When do you first open up
about your autism diagnosis? - Ooh, maybe less than two years ago. I have to like look back, but it's been very relatively recently. - Has accepting your autism diagnosis been part of your decrease
in hallucinations? - Ooh, I haven't quite
made that comparison, but I think it definitely
has helped with accepting me as the person that I am. - In the original video we did in 2017. You said something that I loved. I'm gonna play it right here. - I really will not rest until anyone who has
schizophrenia anywhere, worldwide is not afraid to say the words "I have schizophrenia." - Are you still pursuing
that goal of helping people feel comfortable and confident talking about schizophrenia and psychosis? - Absolutely. And that's something that
I'm gonna be continuing with my advocacy work and
what we're doing as a team with a nonprofit Students With Psychosis. I am so happy and proud of
the progress that we've made with Students With Psychosis. Students With Psychosis is a nonprofit that empowers college
students, advocates worldwide through community building
and collaboration. - [Interviewer] Why was
it important for you to start this nonprofit? - Because when I was a
student with schizophrenia, I had a hard time finding fellow peers. And when I went to other
mental health initiatives, oftentimes schizophrenia
psychosis was left out, because it made people feel uncomfortable. I remember sitting down at a college club about mental health and
I started opening up about some of my hallucinations and people looked at me like I was crazy. People looked at me like
they were kind of scared or uncomfortable. And in a way that made it even worse because here I am in a mental health space and it made me feel even more
crazy or not like I belonged. So, it's important when we're
talking about mental health, having initiatives on college campuses that we are including psychosis. - You brought two members
of the organization's Cece and Shamus with you today
and I'm gonna interview them about their life and how
Students With Psychosis has impacted them. - So Cece and Shamus, they've
been part of the SWP team for a while now. They're both on the executive board, and they also both wear
like two different hats. They're also part of
volunteer staff as well. They're on the executive board and they're also both operation directors. So they're very involved
behind the scenes. - Prior to Students With Psychosis, I, at least for the most part, wouldn't have dared tell anyone anything that I was experiencing. I wouldn't reach out for help, I wouldn't even, you know, I
was really going through it, I wouldn't ask for a hug, nothing. I just didn't wanna put myself
through any complications that might arise from
having to tell someone. And in having that support
with Students With Psychosis, like, recently I told one of my coworkers about my experience and
it was just kind of, we were just talking back and forth and they were actually,
like, very accepting. I get a lot more nice surprises like that, that come with taking risks that I don't feel like I
would've been too afraid before Students With Psychosis
to do something like that. - [Interviewer] Tell me
about yourself Shamus. - Oh, let's see. What do you wanna know? Do you wanna about like,
my school, my career, my symptoms, my mental illness? - [Interviewer] When I ask
you to tell me about yourself, what's the first thing
that pops into your mind? - I... Student at Berkeley studying
to be a guitar teacher. - When I was a student reaching out and trying to find
psychosis specific resources was a challenge. And there's so much power when it comes to power in community, power in finding those
peers, feeling accepted. And I've honestly learned
so much from Shamus as well. 'Cause we're both fellow
peers living with psychosis. - I started dealing with
symptoms of psychosis. And when it first came
on, I didn't really know what was going on. - [Interviewer] How old were
you when the symptoms came on? - I was about 16 or 17. At first, I had the bipolar part of the schizoaffective
disorder with the bipolar type. I had a depressive episode
for about six months, then that just flipped
on a dime into mania. And then that kind of
catapulted into hallucinations. It started kind of like background noise, and then background noise
turned up into hearing voices and then constantly hearing voices. I started hallucinating more. I was hallucinating demons and that kind of led to some delusions, 'cause I thought that the
demons were like torturing me with the voices and it was a whole thing. - [Interviewer] Do you still
experience a lot of that now? - Actually it's a lot
better at this point. It was really bad for maybe
about like two or so years. And I went on a big hunt to find people who were struggling with similar things, which is how I found Cecilia and Students With Schizophrenia, and Students With Psychosis, excuse me, that was the original name. And I just really, really dug in trying to find ways to cope. And it was hard, I still struggle, but it did over the years
get easier, thankfully. - [Interviewer] If there's somebody experiencing their symptoms in
silence, afraid to speak out, what would you say to them? - First, I wanna say that it's okay to not have to share everything. I know for me when I
first started opening up about my schizophrenia, I thought that I had
to say or tell everyone about every single hallucination or symptom that I had or whatnot, but it's okay to only share what you feel comfortable
sharing at the time. And it's okay to sort of
build that trust with someone. That you don't have to
open up everything at once. Also, I wanna say that
people care about you. There are resources out there. I know for me, I don't think
that I would be here today if I didn't get the proper medical health, if I didn't find community
members and a support network to be there with me on my difficult days. So people care about you. - [Interviewer] Can you tell
me about Cecilia's impact in the psychosis community? - Yeah, she really is... She's a leader within the community. She, I think empowers a lot
of people who are feeling... It's very easy to be isolated
and feel kind of, you know, meek and powerless when dealing
with something so intense and so isolating. And she just being like loud and proud and getting this whole community together, I think inspires a lot of people. - There's an event tonight
with Students With Psychosis and I'm coming, I'm gonna film some B-roll and probably put it in this video. What is the event? - I'm so excited about the event tonight. We're having our Boston meet up here. We're in Boston. And some of our students
and advocates in the Boston or surrounding area, we'll
be having an open mic, we'll be having a discussion. So it's gonna be a really fun event. There's gonna be some music. There's gonna be some storytelling. There's gonna be discussion. I'm really excited for you to come. - I'm excited to be there. - All right, so hey, everyone. My name is Cecilia. I
am from New York City. So traveled in this morning. My pronouns are they/she. My high and low. My high would definitely be here today and seeing all of you. It's really amazing that we're having these in person meet ups again. My low would be, hmm. It's hard to think of a low
'cause today's been a good day. I guess maybe the rain, just because like my hair game today. So I'm now a little frizzy. So there's that. - Cool, cool. I'm Lane, and I am just from right here. I am a student here at BC. He/him. And a high for today
is probably just this, getting to meet everyone. And I've connected with
a lot of people online, and just seen 'em all in person. It's been great. - I mean, I've had professionals
have helped me so much, but even with professionals, you know, they just don't live with it
at least most professionals. And so they'll get aspects
and they'll like really try and, you know, be kind and, you know, and everything like
that and compassionate, but finding people who
actually have experienced it, they just get on a different level. And it's relieving to be able to almost not have to explain it as much. - My high is definitely this meeting. I'm feeling very energized by that. My low is probably scattered thoughts, which is definitely one of
my more constant symptoms, like hallucinations, delusions are kind of come and go at this point, but scattered thoughts
are pretty constant. But other than that, doing really well. - What's your first conscious memory of having a moment of psychosis? - When I was around like four or five, I've had schizophrenia for all of my life. It became more prevalent
my junior, senior year of high school and then
snowballed into college. But five years old, I remember struggling with hallucinations. There was this shadowy figure that would come out of my closet. My parents would call it Mr. Blob Man. And I honestly, you know, don't blame them for not taking it very seriously. Like, what five year old
isn't scared of their closet, you know, and thinks that
there's like a monster in their closet. I mean, they made a Pixar movie about it. So like, I get it, but
then at the same time, I wish there was more education
about what is schizophrenia? What is psychosis? Because I didn't hear those
words until I was much older. I actually learned about
the word schizophrenia from watching the TV
show "Criminal Minds", which wasn't a good way
to first learn about it. So education about
schizophrenia, psychosis, would've been beneficial. We're gonna go into the open
mic portion of today's event. So we have some amazing performers. We have Rivky gonna be performing, we got Kev that's gonna be performing. - As I said, I grew up
just north of Boston and I started experiencing psychotic as well as depressive symptoms and mania when I was about 10 years old. 'Cause I grew up in a
complicated household with various abuses and neglect going on. So I would often see... I remember the very first night that I started seeing and hearing things. It came in a big wave of sound and fury. And I began seeing
shadowy people and demons. When I would open doors, I always knew there was
a demon behind the door. And started hearing people
talking to me in derogatory ways, telling me I wasn't good
enough, smarter enough, And people didn't like me. And my life, when I was
13, I advocated for myself and told my parents and my
school that I needed help. And I didn't tell 'em I was
seeing or hearing anything, I just told 'em that I was going crazy. And I never actually told anyone that I saw or heard things until I was 35. - [Interviewer] What advice
do you have for support units, families of people with schizophrenia? - I would say my advice to someone who is supporting a loved one is to be patient with that loved one. Also, sitting down and listening to them. I think that oftentimes when it comes to experiencing
a schizophrenia psychosis, we're told like what to do or how to think about our experience. So it's important to
listen to the individual and listen to their needs. - My life from age 13 and beyond, went from psych units to foster care and then high school dropout, homeless. And then I just bounced around homeless and I joined the army, bounced around the country a little bit and in and outta shelters
didn't know I had... I thought I was just, had depression. That's what they told me when I was a kid. You have depression and you're having trouble
adjusting to adolescence. So I just thought I was a bad
person and I was made wrong. Diagnosis came when I was 35. I was a single father with
full custody of a four year old living in a shelter. And I was shoplifting
regularly for our food. And I got caught, and the courts saw that there was something
going on, something more. And they helped me get into a hospital and get a correct diagnosis. - I think that when people
think of the word schizophrenia, think of the word of psychosis, they don't think of a community of people as much as individuals or a diagnosis. You don't think of say, like a team working effectively together or faces of leadership and such. And by working with people with
schizophrenia and psychosis, I've seen that we can work
together well as a team. You know, you can have different
leadership styles and such with schizophrenia and psychosis. And that also we bring
different perspectives to the table as well. There's been positive things through my schizophrenia psychosis. For example, I think I'm
a better problem solver than I was before I struggled
more with my schizophrenia. Because if you question
reality every single day, well that's gonna make
you look at the world a little bit differently. - And so this song that
I'm gonna play for you, the first song is called
"Good Morning Psychosis". And it gives an idea of what
I wake up to in the morning when I first come to consciousness. This is what's going through my head. And then I work through it. You know, in recovery, I've learned to get up a little earlier to work through these feelings. But this is called "Good
Morning Psychosis". (soft guitar music begins) ♪ Comments are constant,
racing, repeating ♪ ♪ Consistent and careless,
combative, misleading ♪ ♪ Defeating the grandiose,
plans I'm creating ♪ ♪ Collecting debris,
protecting and deflecting ♪ ♪ And I know they are listening
with sneaking suspicion ♪ ♪ And they hear all I say, and
it keeps me from speaking ♪ ♪ So lock me away as act of contrition ♪ ♪ This madness is passion
without safety restriction ♪ (soft guitar music playing) ♪ And I won't open the door,
volunteer to the dark ♪ ♪ Where the demons wait
patient to make me their mark ♪ ♪ Well, they're careless with death ♪ ♪ And they swallow your soul ♪ ♪ And it plays itself out and
keeps me less than whole ♪ ♪ And the shadows keep
watching and silently waiting ♪ ♪ They shroud me in darkness,
they keep pulling and baiting ♪ ♪ Motionless and baseless
they plot and conspire ♪ ♪ Gone from the youth where
they first lit the fire ♪ - What's the difference between a delusion and a hallucination? - Yeah, so a hallucination think of it more of something like sensory. So seeing something that isn't there, hearing something that isn't there, smelling something that isn't there, tasting something that isn't there. And a delusion is more
of like a false belief. So believing in something
that isn't accepted by, like, the social norm around you. An exclusion would be, like, you know, a little kid could believe
in like Santa Claus. That's not a delusion because
people around them, you know, are telling them that
it's not real and whatnot. But, like a delusion, an example, sort of cliche is thinking, like the FBI is after you or that you're being followed or whatnot. But then when talking about delusions or talking about paranoia, I think it's important to also address that sometimes someone
can experience paranoia and also experience a delusion. And we need to listen to
the individual patiently and with compassion. Because oftentimes people
living with schizophrenia or psychosis are discredited. Or, are not taken as seriously because they experienced
delusions or paranoia. For example, oftentimes
our ambitions are seen as delusions of grandeur. When I talked about moving, 'cause when we last had our interview, I still lived at Penn State. I wanted to move to New York city, start the nonprofit
Students With Psychosis. And I remember sitting in a
psych ward after our video with my doctor and
another doctor or a nurse. And they were asking me
very personal questions about, like, finances. They were asking me about
how are you gonna do this? Who are you talking with this? And the other thing. And they were treating my whole wanting to move to New York city, starting the nonprofit,
Students With Psychosis as this delusion of grandeur. And this big delusion, and these people I was talking
with or networking with as a delusion. And what message I wanna get across is, you can be someone with schizophrenia, you could have psychosis
and have hopes and dreams. We're people too. And I think that a lot of our community just isn't taken as seriously when it comes to our ambitions. And also sometimes even
our own valid fears are also diminished because it gets labeled
as paranoia or a delusion. - What is that like when you're sharing your hopes and dreams of improving and connecting
the psychosis community, and somebody writes it off as a delusion? - It's disappointing. It makes me feel less of a person. It makes me feel that
my voice matters less. ♪ Well, they argue and
argue all day in my head ♪ ♪ And I lose the intrusive
thoughts left unsaid ♪ ♪ And they hear me, they hear
me, manipulate and steer me ♪ ♪ They questioned my purpose
and won't leave me be ♪ ♪ Resistant, non-compliant,
fight, freeze or flight ♪ ♪ And they know what I'm thinking ♪ ♪ And it's all black and white ♪ ♪ And they argue and argue,
but the points are all mute ♪ ♪ The resulting waves
are short but acute ♪ - What I find, maybe
scary is the right word is that somebody can call
your dreams a delusion, and what happens if you pursue your dreams and things didn't go as they went? What if they just didn't work out? Would you think that you're delusional and not pursue your dreams anymore? - You are talking about
one of, like, something that's, like, that bugs me a lot. Because say if Students With
Schizophrenia was a flop. Say that it didn't work out. Luckily it did, but say that it didn't. Would people just thought
I was a delusional person with schizophrenia? But when you look at
entrepreneurs and stuff, how many failed business
ideas are there, you know? Neurotypical people doing
business ideas that fail and such. And I think that people
living with psychosis, maybe aren't given that
same grace to make mistakes or people don't have that
level of confidence with them. So luckily, you know, things worked out, we have a beautiful community. Our nonprofit is doing well, but yeah, that's a very
valid concern of mine was I'm going all in on this nonprofit, and if it fails, am I gonna be labeled as that delusional
person with schizophrenia that moved to New York city? - Hi, my name's Cecilia
friends call me Cece. She/her and I came in today
from Atlantic City area of New Jersey. - [Interviewer] Tell me about Cece's role in Students With Psychosis. - Yeah, so Cece serves
on our executive board. They also wear a hat on our staff as well, on as an operations director. So Cece helps on the executive
board and also on staff and helps oversee our programming to make sure it runs smoothly. - [Interviewer] How did you
first get involved with SWP? - Well, I found out about
SWP through a YouTube spiral where I was just going in
video after video, after video. And I was looking up schizophrenia and different organizations
and support groups related to it. And I stumbled across Cecilia's TED Talk, and it just flourished from there. - [Interviewer] What
caused you to research schizophrenia on YouTube? - Well, I'm diagnosed as schizoaffective. So I was looking for
people with like minds. - [Interviewer] What was it like when you saw Cecilia's video? - Oh, it was amazing. It was like this, like I
found this amazing treasure that I could open up and utilize, and it was like, it
felt very custom for me. It was really great to see that there was a community
of people with like minds because growing up in the 90s, there definitely wasn't a support group or really conversation about
psychosis and schizophrenia. - [Interviewer] When you
have a whole organization and every member is
diagnosed with psychosis, do you have to provide any accommodations? - Yeah, absolutely. And I think that that's something that Students With Psychosis is modeling on how do you have workplace
that is not only supportive, but empowering to people
living with psychosis. So ways that we make our workplace
empowering and supportive is, we have very flexible deadlines. We also take a very
team/community approach to things. So, and also we make sure that we're checking in on
people's mental health. For example, on our work check,
we have a temperature check where if someone behind
the scenes can let us know if they wanna go on mental health break, if they need some
additional help or support or they're back from
a mental health break. So it's important that we're checking in on our team members. - I'm Josh. I use he/him and his pronouns
and a little bit nervous, not gonna lie, but I will say my high is that I saw my
grandparents in Brunswick, Maine. - [Interviewer] Josh, how
long have you been involved with Students With Psychosis? - I've been involved for
about a year and a half and I love it. And it's really cool 'cause Cecilia who's the head
of Students With Psychosis, the leader. I had seen her on YouTube
before and I thought to myself, "Wow, that's amazing what she's doing. "I'll never meet her." And then here we are today,
and I met her and I've met her. It's been an amazing experience. - [Interviewer] What is it like for you when you see somebody who
came into your organization make positive changes in their life? - I am so freaking proud
of every single person part of Students With Psychosis. And it's honestly such a
privilege getting to meet someone when they first join SWP. A lot of our community
members have been part of SWP for a couple years or more. And it's amazing seeing their growth, whether it's like with
academics or person level, but also sometimes there's
even their comfortability about talking about psychosis. - Outside of finding the
treatment plan that works for you, What else have you done to
get to where you are today? - For me, it's been
also a lot of acceptance of being a person living
with schizophrenia, being autistic, accepting
myself as a person that I am. - I can see it in you, like,
you have this acceptance, this air of acceptance that I love to see that makes me happy, that
definitely wasn't there in 2017. - I agree 'cause at that
time I was embarrassed about having schizophrenia. And now it's like, if
people don't accept me for having schizophrenia
or being autistic, it's their problem, you know? And a lot of what's
given me this confidence, was finding fellow peers, fellow
peers living with psychosis and really being proud of
the community that we are. - Being with a bunch of people who have experienced psychosis and have been diagnosed
with schizophrenia, bipolar, you know, anxiety, depression, additionally, to a lot of these disorders has really helped me
feel like I'm not alone and that there are other people
like me and we're normal. - What advice would you have to somebody who's in a similar place to where you were when we first met? - Don't give up on yourself. If anything that I've learned
about the future is that, you know, whatever you think
the future is going to be, it's probably not gonna be that. And so don't get caught up in signing yourself off on something. Like for me, I'm glad that
I didn't give up on myself. I'm glad that when people thought that starting the nonprofit
Students With Psychosis was a delusion or whatnot, I'm glad that I didn't believe them. I'm glad that I didn't let their words of discouragement slow me down. So my advice is be patient with yourself and don't give up on yourself.
