Dianne Greeley: Redefining Advocacy for mental health reform

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world one story at a time. Hi, I'm Tony Mantur.
Welcome to Why Not Me? Embracing Autism and Mental Health Worldwide.
Joining us today is Diane Greeley. She is here to
tell us a different perspective. If you listen to May fifteenth,
the Jessica Ferguson episode, she shared her personal story of
her brother's struggles with serious mental illness. She told her
story of her and her sister and how they try
to help their brother. In this episode, Diane, who shared
a loving relationship, offers her own deeply personal reflections shedding
light on his struggles from a different angle. This profound
experience transformed her into a passionate advocate for mental health
reform and dedicated to creating change in a flawed system.
This is a moving conversation that underscores the human toll
of untreated mental illness and the fight for a compassionate future.
So before we dive into our episode, we'll be back
with an uninterrupted show right after a word from our sponsors.
Thanks for coming on my pleasure. I think the best
place to start is the beginning, when you first noticed
that something wasn't quite right.
Okay, I first knew that he was really struggling when
he invited me over to his house and he told
me that he had just been released from the hospital.
We hadn't spoken for a couple of weeks, so I
had no idea that he had gone into the hospital.
But I found out that he had been in the
hospital and had just been released, and he asked me
to join him and his sisters in a zoom call
with his clinician at the community behavioral health center that
he had been going to had been a client of
or ten years, So that was the next day. So
I joined in on that he recognized that at the
time he had insight into his illness and well being,
and he recognized that he needed some support around him.
So that call went fine, and I think the next
day his sisters and I exchanged numbers to sort of
keep in communication about what was going on for.
Him, okay, and then what happened next.
Unfortunately, over the next couple of months, he just continued
to decline, and his sisters and I were reaching out
to many different organizations for help. We spaw that he
was not well and that he needed help and support,
and we were doing our best to get him that support.
It just we never really found what we needed.
Yeah, that's unfortunate. Now, if I remember correctly, one of
his sisters was living with him.
Correct Yeah.
I tried very hard to sort of be with him
and hang out with him to keep him safe, and
so his sister and I talked a lot, because I
was at the house quite a bit. We were just
noticing very very odd behavior that we just we knew
he needed help, We knew he needed treatment, we knew
he needed a hospital stay.
We really didn't have any power to make that happen.
Yes, so did he think there was something wrong. Did
he fight it or did he just not know that
he was going downhill?
So I don't know exactly I think it.
You know, it progressed over between February, I think most
definitely April May he was experiencing anasygnosia and completely lost
insight into even the fact that he had an illness.
He was Every time that I tried to convince him
and talk to him about going to a clinic or
seeking some help in a hospital, he was adamant just
he was fine.
He didn't need treatment, he was fine. He had completely.
Lost the ability to care for himself, but he didn't
he thought he was fine.
Okay, So was this the first time you've ever gone
through something like this?
Yes?
Yes, So what was going through your mind?
I was worried about him.
I was pretty dumbfounded that all of the places we
reached out to didn't really help us. I guess I
assumed that, especially in a state like Massachusetts. I think
Massachusetts has excellent behavioral health services and help for people
with general mental illness things like anxiety depression, but for
people with severe mental illnesses, Massachusetts has failed.
Yeah, that's a sad thing. Now, I spoke with the sister.
She came on my podcast and we discussed several things. Now,
what did you talk about with both the sisters in
how youth handling this? Because it was one of those
situations where none of you had ever crossed that path before, right,
So what was going through everyone's minds on how to
address the situation.
We were all really just clueless, and this was all
happenings like his behavior. Our concerns for him certainly grew
as time went on, but we felt like we were
running playing ketchup, very very unprepared. I have learned so
much since, but at the time, I did not understand psychosis.
I didn't even know what anisignosia was. I didn't know
treatment laws. I really had no idea. What I tried
mostly to do was hang out with him, keep them safe,
and try to do my best to take care of him.
Sure, and that's a tough situation. Now, if you can
explain to our listeners what your capacity was with.
Him, I'm a caretaker.
I spent my career as an early childhood educator, as
a childcare provider, and I recognized the humanity and everybody,
and I just want to help people who need it.
He and I got along very well.
We really understand each other, but it grew to a
point where I could not at all understand what was
going on for him. I was watching as his illness
was taking over, and I had no idea what to
do to help him.
Yeah, and that's just so tough to be in a
situation like that. Now as it progressed, how did that
affect your relationship with him?
I know that it was really exhausting to be around him.
His mind was going a mile in a minute, definitely,
his body was also.
He would speak in Spanish a lot.
I did my best to understand him, but he was
speaking so quickly that it was hard to We got
along most of the time. There were times I needed
a break and I would just kind of, you know,
I got to go.
You know, I'll see you in a couple of days.
I also tried to give his sisters a break because
it was really challenging to be around him and to
handle his rapid speech but ideas and all of the
things he wanted to do. Though, I tried very hard
to help his family with that, to give them a
break as well. I love him, I mean he's a
wonderful person, and I knew he was in there. I mean,
I know he was in there, and we did not
have the power to bring him out, and we didn't
We didn't understand it. None of us really understood what
was going on.
Yeah, that's tough. Now, how long had you been seeing him?
We met in twenty twenty one. Honestly, within a couple
of weeks, I felt like I knew I have known
him forever. We were together for almost a year maybe,
and most definitely his illness affected our relationship. Even before
he was manic and then eventually in psychosis, he had
definitely had mood swings. I saw him in depressed episodes
for sure, and there were times that he just sort
of shut down and didn't talk to me, which was
very hard. At first, I didn't understand it was due
to his illness. After this happened a couple of times,
I understood it. But I think he's a wonderful person
and I was okay with that.
So what were your thoughts? How did you figure out
that he was actually going through psychosis at that point
in time? If he was kind of going in and
out over the period of time that you knew him.
When did it actually set in that, Hey, we've got
an issue here, We've got a problem, and we have
to figure out how to handle this.
I mean the way that he was in twenty twenty three.
I had never seen anything like that before. In the
previous years, I had seen him just depressed. I had
never seen him in a state of mania. It was
mania in the beginning, but then there was definitely a
clear shift in that he did not he was not
in touch with reality. It was really hard to talk
to him.
Okay, so he's still incarcerated at this point in time, correct, Yes,
are you still in contact with him?
Yes?
So how is he now compared to before when all
this had started.
With adequate treatment, he's himself again. Unfortunately, he was hospital
a lot in twenty twenty three.
Before he was arrested. He was hospitalized three times.
He definitely came out of the hospital just as sick
as he had been he went in, which was really
sad and hard to see. I went to visit him
a couple of times, and both times I said I
asked to speak to the doctor the provider that was
working with him. He was right next to me and
didn't object. I was never given that opportunity. The hospital
that he was brought to twice was going through a
financial crisis and they were focused on profit overcare.
It was severely understaffed.
I remember being horrified when I arrived there at the
hospital to see him and at the lack of staff,
just the very poor treatment that was being offered to
him at the time. I have learned since that date
leaders knew of this hospital's problems yet didn't do anything
about it, and many lives were lost because of their neglect,
and that I think is part of what failed for him.
Yeah, that's really sad. So have you become an advocate? Now?
Are you advocating for him? And while you do that,
hopefully helping others.
I will never teach again from this experience. I am
a different person than I was before this all happened.
I will never stop advocating for better treatment, better medical care,
and improvements in how our state, Massachusetts, and the country
treat people with severe mental illnesses. I'm horrified by what
I have seen, witness heard, and I have to do
what I can for the rest of my life to
improve things and to make sure that these people matter
and that they are taken care of.
Yeah, that's a great way to look at it. Now,
are you working for any advocacy or what's your plans
on that.
I'm not working at the moment. I am sort of
trying to figure out who I am now. Who I
am for sure involves advocating. I have reached out to
TAC Treatment Advocacy Center. People there have been wonderful, very supportive.
I got in touch with Anne from National Shattering Silence
Coalition pretty soon after this all happened, and she's been wonderful.
I'm just learning everything that I can and trying to
make things better.
I think that's great. Your story is so different from
everyone else, but yet it's the same as everyone else. Yeah,
I think where different from my podcast standpoint is a
lot of the people I have on my podcast have
a lived experience of their sons, their daughters growing up
and having to deal with it through over a long
period of time. Some are advocates working like TECH or
NSSC or any organization like that. You, on the other hand,
was dating him and then all of a sudden it
just started coming on, and then it evolved into a
situation that was the big unknown for you. You'd never
seen anything like that.
Now.
I always make the comment that it's the big unknown
and people don't know what to do. So how are
you navigating through this? So you'll be in a situation
of where you can tell others how to navigate through it,
kind of like you did.
I am doing the best that I can, I think
is all that I can say. I don't feel at
all ready to be I think that I am one
day at a time. Really, my experiences after his arrest,
even with city leaders and people in the criminal legal system,
have been more traumatic than even the events prior to
his arrest.
Okay, can you expand on that some I can. What
makes you say that about the city leaders? What have
they done? Or maybe what have may not done?
So I was taken care of him the weekend that
he was arrested.
I had brought him to my house.
He had complained that the altitude in his bedroom was
too high, and I live in the basement of my
parents home. I invited him to stay with me, hoping
that he would get some sleep, get some rest, and
wanted to give his family break. My parents love him,
and he was always welcome here, is always welcome here.
I was visited by detectives the night he was arrested.
That experience was traumatic. I told them the truth. I
did everything I could to help them because that was
the right thing to do. What they did from there
was not honest or professional, or.
It's been traumatic.
I will say that I had no idea how unaffair
the criminal legal system is. I've been lied to so
many times by city officials, leaders and the people in
the criminal legal system.
I've done everything I can.
To help I did everything I could to help him beforehand,
and I've done everything I can to help the system
do what it has asked me to do, and I've
been treated terribly. That to me is just a peeny
piece of how he has been treated, and it's ruined
me as a person. But I am building back from it,
just slowly.
So what stands out to you, it doesn't have to
be anything specific, What stands out through the whole process
that surprised you, that made you realize things weren't as
you thought they were.
So I guess after he was arrested, I was so
taken aback by what had happened. Knowing that his sisters
and I had done everything we could to try to
get him adequate help. I just needed to understand how
that happened. I just sort of dove into research and
looked into everything I could to figure out how this happened.
And I learned that the city that he lived in
has a community Crisis Intervention Team created in twenty twenty
one to support residents of the city and their families
when a person is going through a mental health crisis.
Not one member of this community crisis intervention team ever
reached out to this family his family. I learned that
they offered mental health court sessions for residents. This was
never offered to him. None of the supportive services and
resources that had been committed to by the city were
offered to him or his family. I went to city
hall before I knew all this, to sort of say, hey,
how did this happen, Let's work together to make it better.
That sounds really good. How was the reception to you?
I was welcomed that first, but then when I started
to ask more questions, that welcoming attitude changed. Many mistakes
were made. The hospital did not do what they were
supposed to do. The community behavioral health center that he
was a client of did not do what they were
supposed to do.
I looked into it.
His sister reached out to them twenty two times in
these during these months he was struggling. They never stepped
up to help him. The legal system is not fair
or just at all.
So even with all the things that didn't happen the
way view'd hope they would, did anything good come out
of this that you can look back and say, Okay,
that was worth it, at least for that point in time.
I know that I meant to be in this situation.
As tragic as it is, I know that my life
experiences and who I am I am met for this.
It has been extremely painful and hard to navigate, and
I'm still working on that. But I have met some
really incredible people because of this. My experiences have changed me,
and I'm committed to this, to making things better.
I think that for the past.
Couple of years, for me, it's been educating myself, trying
to learn how this world works and all of the
pieces I can about severe mental illness and psychosis and anasignosia.
That's a huge part of what I'm doing now is
educating myself.
That's great. So what are your plans for the future.
Now that you're diving into this, you're learning, you're absorbing
at all. Where do you see yourself going from here?
Make change?
Improvements have to be made as a society. We have
completely neglected and abandoned people with severe mental illness. Our
leaders have chosen to look away and not acknowledge the
reality families. I feel good when I can support other
families who are in similar situations. I mean, nobody's in
the exact same situation, but it feels good to be
able to do a little bit to support other people.
I care for people. That's who I am. I can't
see this problem and then look away. I'm just going
to keep learning and doing whatever i can to make improvements.
Yes, do you have any plans on how you're going
to implement that and what you think needs to be
done so you can help to make those improvements.
I think most definitely educating. I think that education is
a huge piece. I think that the general public needs
an education. But I think also that public defenders, district attorneys, judges,
people involved in the criminal legal system need an education.
They need to be educated about severe mental illness.
I think that providers and clinicians need to be educated
on protocols for sharing information with caregivers of people with
Seeder mental illness, as well as many other things. I
have specific goals in my state that I'm working forwards
because Massachusetts has failed people with Sudar mental illness so terribly.
There are lots of things to do in Massachusetts where
he is now is the only state forensic psychiatric hospital
in any country that is run by the Department of
Correction and not the Department of Mental Health. That is
absolutely not okay. So that's one goal to work on
that bill to change oversight to the Department of Department
of Mental Health.
Yeah, that's good. So you're planning on reaching out to
senators and legislators trying to make changes through legislation.
Yeah, I have. I mean I send a lot of emails.
That's great. So what's the response been.
It's been tough.
Most people don't want to hear me. But I'm going
to keep at it. I just what happened to me,
what happened to him. This story needs to be told
and it needs to be understood for the failures that
happened along the way. That's the other piece I think
that city and government officials have not acknowledged at all
the failures, and that needs to happen because you can't
improve things if you don't understand them.
One of my goals is shedding light.
I think that's great. What you're doing is very inspirational
and hopefully you're going to help others get through a
lot of things that they're going through that they don't
understand by doing what you're doing. I think it's really
great that not only are you standing by him, but
you're becoming this advocate. So you just have to keep
moving forward with it because you're going to help a
lot of people.
We've been good friends even the times that we were
not dating. We've remained good friends.
Yes, and that says a lot about you and what
you're doing. So, like I said, you just got to
keep moving forward. Now, Well, it's all about information education
and getting as much information that you can out to
the people so they can learn about what's going on.
I just thought of one other thing. I have been
making videos as a way to educate people. One thing
that I felt like soon after this all happened was
that we treat animals in this state better than we
treat people with severe mental illness. And it made me
think about commercials on TV for the ASPCA, and those
really heart wrenching commercials that I know that if I
watch them, I'm going to donate immediately. So I felt
like maybe I could reach.
People with that.
I think that's a great idea. Videos can be great
tools for people to learn by.
Something like that.
So I've made a couple of videos as a way
to highlight what's happening.
Yeah, that's great because people just don't understand sometimes.
Yeah, and people just don't know.
I absolutely agree, and I was one of them before
I started this podcast. I knew nothing about it. The
more I've taught with people and it's been consistently talking
with people over the last five or six months, that
I've learned so much from it. So you are right.
I think what you're doing is definitely a very good thing. Now,
is there anything that you would like to tell the
listeners that you think is just very important that they
hear about what you're doing and serious mental illness.
People living with severe mental illnesses are human beings. They
deserve care and compassion like everybody else, and sometimes that
care and compassion requires that we make sure that they
receive involuntary treatment, because when a person is suffering from anasygnosia,
they are not going to voluntarily go along with treatment.
I think that people need to understand that that is
care and compassion sometimes, and I think a continuum of
care is very important.
He was my loved one was dumped on the.
Streets each time that he was released from the hospital,
no communication with family or caregivers, and that's not okay.
Yeah, I think just shedding light.
My goal is to shed light on what happened, to
make sure that nothing like this ever happens again to anybody,
and to just pushed that we need to care for
people with severe mental illnesses because they deserve that.
Absolutely. Well, this has been great, great conversation, great information.
I really appreciate you taking the time to join us today.
Thank you very much for having me on. I have
listened to many of your podcasts recently.
Amazing.
I think what you're doing is incredible and I want
to thank you because our voices are not heard and
you are doing such an excellent service for people.
It's wonderful what you're doing. Thank you very much.
Oh, it's been my pleasure. Thanks again, thanks for taking
time out of your busy schedule to listen to our
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