The Haven, a History

Why did you start The Haven?

Be yourself; Everyone else is already taken.

— Oscar Wilde.

My name is Zen, and I am the founder and owner of The Haven, a 501(c)3 nonprofit based out of New York, and I operate a Discord server online that was created July 15, 2017. My invaluable colleague Ghostbot works as my co-pilot and general savior. HavenBot is his brainchild. Even if you’ve never met him on the server, he is integral to everything. Say thanks if you see him!

We recently passed our two-year anniversary and reached about 6000 users, which got me thinking. How did we get here? Why am I still doing this? People ask me in the chat all the time, “Hey Zen, why did you start The Haven?”

I usually think, “Well, because it wasn’t there.”

Mental illness can leave you feeling isolated and alone. There is so much stigma around mental health and we hear it constantly. We internalize it. We are afraid to talk about it. We feel ashamed because of what we feel. But that doesn’t have to be the case. I refuse to go quietly.

A few years ago, I broke my neck and back in a suicide attempt. It came after years of frustration with my own mental illness, miscarriages, heartbreak, and several other suicide attempts. I’ve always been outspoken about my mental health, and while I was in recovery I decided that I wanted to use and share my personal experience. Maybe others could avoid some of the hardships and struggles that I went through. Maybe I could actually help someone. At least then I would feel like it all meant something. The cliché is not lost on me, I promise.

I spent years in and out of hospitals, dragged around by manic and depressive episodes, and unable to study or work. Many of those hospitalizations were traumatic, and have left me with a lingering fear of being hospitalized.

I’ve done a number of different types of therapy, including electroconvulsive therapy (ECT), cognitive behavioral therapy (CBT), and dialectical behavior therapy (DBT), and my life has improved significantly. Yes, ECT is shock therapy. No, it’s not like it was back in the day. They put you under general anesthesia and you can’t feel a thing. Did you know that Princess Leia had ECT? She even wrote a book about it. Yes, my memory was affected but it’s gotten a lot better.

Despite all that, I am now in a stable place. My medications work. I am back in school pursuing a master’s in social work and working as part of my field placement. I did not do this alone. I had extensive professional help. I also had my friends, who are there for me no matter what. And I had the internet.

When I was younger, I found solace in chatrooms and forums dedicated to mental health. Today, platforms like Discord are offering ’90s-style chats for free, with thousands of your friends! (Some of these servers have 100s of thousands of members!!) Discord, though intended originally for gamers, has been embraced by all sorts of organizations and fandoms, including the mental health community.

I found a few mental health servers when I was first looking for one. I didn’t know where to search, honestly. I ended up moderating on a small server for a while, but eventually left because I had ideas of my own. That was when, at the behest of a friend, I created The Haven.

Having an understanding community can be very powerful. Learning from others can lessen the anxiety of a new situation. It can help relieve feelings of loneliness and isolation. I decided I wanted to take advantage of these positives, and, like others before me, try to create a server where peers with mental illness could communicate with one another without stigma or judgement. Who better to seek advice from than someone who has been there themselves and come out the other side?

My experiment was The Haven, and it is brought to you by Reddit. The first place I advertised it was in /r/bpd. We got quite a few members that way. I expanded to several other subreddits and posted regularly for a while, but then I shifted to ads on Google and Instagram instead. Slowly but surely, people trickled in.

When I started The Haven my intention was to lean on the power of peer support. I think talking to professionals is wonderful and can be very helpful, but not everyone has access to a professional or wants to talk to one. But talking to someone you identify with can demystify the circumstances you find yourself in, especially tricky mental health ones, and offer hope.

Members of The Haven have helped me enormously, and I have made lasting friendships. With the chat there 24/7, I am never alone. Even when I’m up at 4am for no good reason, my European and Oceanic friends are there to chat with. I can only hope that others find the same type of respite.

Peer support isn’t perfect. The server is far from perfect. But we are trying everything we know how to do because at the end of the day all any of us (the Team) wants to do is help people get by.

I will emphasize that we are not an alternative to crisis lines. We are not currently equipped to handle that, and will refer people in active crisis to suicide hotlines and other crisis services.

In summary, The Haven exists because I am gloriously, mentally ill, I’m a nerd who loves chatrooms, and I believe that peer support can change lives.

Mental illness is a wild ride by itself. There’s no reason you have to do it alone.

In addition to supporting the Discord chat, the nonprofit aims to help people access mental healthcare in the real world.

Women, Prison, and the Disruption of the Family System

To:Presidential Candidate Elizabeth Warren
From:JB
Subject:October 31, 2019, “Women, Prison, and the Disruption of the Family System”

Purpose

This memorandum is intended to shed light on the mental health epidemic that plagues our criminal justice system. In particular I will explore the effects caused by separating incarcerated women from their children and families and subsequent adverse mental health outcomes.

Mass Incarceration

Mass incarceration has been touted as “the new Jim Crow” and the statistics are devastating.[1] The United States has the highest incarceration rate in the world. As of this year, there are 2.3 million people in federal, state, and local prisons and jails, as well as other forms of correctional facilities.[2] This does not include the millions of people on parole and in alternative-to-incarceration situations. There has been a rise in women’s incarceration as well. In 2017, there were 225,060 incarcerated women in the U.S., which is 30% of the world female prison population.[3] Since 1978, the number of women in state prisons has increased by 834% and roughly 2,879,000 women are jailed every year.[4] This indicates that state and local policies have played a huge role in this growth.[5] Disproportionate sentencing, a result of The War on Drugs, and the persecution of the mentally ill have also affected the numbers of women involved in the justice system. A study by the US Department of Justice in 2006 estimated that approximately half of prisoners in the US had some type of serious mental illness.[6]

Pathways to Prison

Women are most often charged with low-level crimes like drug possession rather than violent crimes. Said crimes are typically based on “survival (of abuse and poverty) and substance abuse.”[7] Justice involved women are often victims of sexual and other forms of abuse and, in addition to substance abuse, they experience co-occurring disorders linked to trauma or mental illness.[8] In general incarcerated women experience mental illness differently than male inmates and are more prone to disorders like PTSD, anxiety, and depression.[9] One study from 1996 indicated that at least 80% of incarcerated women suffered from a lifetime mental illness.[10] These women deserve higher quality and more frequent psychiatric care. Quality of staff and required accreditations should be considered. Additionally, we need preventative community actions, such as increased access to mental healthcare and substance abuse treatment. Alternative-to-incarceration programs could offer both types of care, while allowing women to stay at home.                                      

Separation of the Family

Women cited separation from family as the most difficult aspect of incarceration.[11] 80% of women who are jailed each year are mothers and about 150,000 women are pregnant at the time of their incarceration.[12] Separation from children has tremendous adverse effects on the mental health of female inmates, in part because about 64% of women tend to be the primary caregivers of their children, so the separation weighs more heavily on them.[13] Being incarcerated can lead to losing at least temporary custody of one’s children. Both separation from and losing custody of children can be traumatic, and likely to be a precursor to mental health events.[14] This explains why negative news from the “outside” can trigger self-harm.[15] Thus, I believe coping with separation from the family ought to be aided by offering more services to connect incarcerated women with their children.[16] We should allow all minors visitation rights throughout the US. “As of 2004, 62% of female state prisoners and 56% of females incarcerated in federal prisons in the United States were mothers of minor children.”[17] Increasing the ability to communicate with family by phone and computer and lower bail costs might help assuage or prevent the trauma caused by separation from family. Additionally, I recommend increasing funding of educational programming, as education has been proven to reduce recidivism rates significantly.  Inmates have a 16% chance of recidivism with literacy education, and a 70% chance of recidivism with no literacy education.[18]


[1] Alexander, Michelle, The New Jim Crow, The New Press (2012).         

[2] Mass Incarceration, The Whole Pie 2019, https://www.prisonpolicy.org/reports/pie2019.html, (March 19, 2019).

[3] World Female Imprisonment Listhttps://www.prisonstudies.org/sites/default/files/resources/downloads/wfil_2nd_edition.pdf.

[4] The Gender Divide: Tracking Women’s State Prison Growthhttps://www.prisonpolicy.org/reports/women_overtime.html, (January 9, 2018).

[5] The Gender Divide: Tracking Women’s State Prison Growth, https://www.prisonpolicy.org/reports/women_overtime.html#statelevel, (January 9, 2018). 

[6] Powers, Ron, No One Cares About Crazy People: The Chaos and Heartbreak of Mental Health in America, Hachette Book Group, (2017).

[7] Bloom, Barbara E. Addressing the Mental Health Needs of Women Offenders 

 https://www.stephaniecovington.com/assets/files/FinalAddressingtheMentalHealthNeeds.pdf, (2008).

[8] Ney, Becki, et al. Ten Truths that Matter when Working with Justice Involved Women,

http://www.ncdsv.org/images/NRCJIW_TenTruthsThatMatterWHenWorkingWithJusticeInvolvedWomen_4-2012.pdf , (April, 2012).

[9] Ibid. 

[10] Bloom, B.

[11] Tartaro, Christine.

[12] Jail will separate 2.3 million mothers from their children this year, https://www.prisonpolicy.org/blog/2018/05/13/mothers-day-2018/ ), (May 13, 2018). 

[13] Tartaro, Christine, Suicide and Self-Harm in Prisons and Jails, Lexington Books (2019).

[14] Roth, Alisa, Insane: America’s Criminal Treatment of Mental Illness, Hachette Book Group, (April, 2018).

[15] Ibid.

[16] Ibid.

[17] Tartaro, Christine.

[18]Literacy Statistics, http://www.begintoread.com/research/literacystatistics.html, (2018).

Sleepless Nights

4 AM

I write to you from 5:55 AM, nearly two hours since I woke up. I didn’t go to sleep until 1AM though. I think I was just hyped up and excited for today. I’m going to a home for at risk youth to work with them on their literacy through a writing workshop. I’m looking forward to it. I didn’t do as much prep as I’d wanted but I have a midterm on Thursday that I have been studying for.

I should explain a little. After many years of wandering the world trying on different hats, I have decided to try on the social work hat. So I went back to school for an MSW in Social Work at NYU. Before that I tried post-bac psychology, post-bac premed, I almost finished my medieval studies’ master’s. I opted out of the final thesis because I realized that there were no jobs and I was really bored. Why waste more money and time? In college I majored in English and History, with a focus on medieval studies. My work has mostly been in retail selling jewelry of different types. My favorite was working at Beadworks in Cambridge, MA teaching people how to make jewelry and doing repairs and stuff.

My mental health got in the way a lot. In college I took 2 different semesters off, not in a row, because my mental health was so bad. I only ended up inpatient twice during my college years, which I think is impressive considering how fucked up I was at the time. I had a great therapist though. I was really not near my psychiatrist so it was hard to be appropriately medicated, I think.

Ok so, I have, among other things, bipolar nos (not otherwise specified). This took me years to figure out. When I was 14 I got a bipolar 1 diagnosis and we operated under that assumption for a couple of years until my psychiatrist decided I wasn’t bipolar at all. It wasn’t until my sophomore year of college, after reading “An Unquiet Mind” by Kay Redfield Jamison, a memoir about living with bipolar, that I went back to my psych and said, “Ok for real, this is definitely bipolar.” I made my case, she agreed, and I walked out with a bipolar 2 diagnosis. Years later they changed it back to 1 and then finally I recently found out that my psych has been writing it as bipolar nos, which is kind of not either 1 or 2 but its own beast. Bipolar is a spectrum much like Autism, ranging from the most mild bipolar 2 to the most intense bipolar 1. I guess I don’t really know where I fall. I was told that that’s pretty rare. I don’t know the statistics but yay me for being unique!

I sleep like Benjamin Franklin. I go to bed early and then I wake up for a few hours in the middle of the night. The server knows you can most likely find me awake at 4AM and lurking in the Lounge. This is kind of a good thing since we are short staffed at night. Most of our mods are in EST/EDT, so when 12am EST hits everyone starts dropping off. It’s hard to find people to fill all the timezones, but we’re trying and have a pretty good spread of people right now.

If members only knew how much background work goes into The Haven they would be shocked. Shocked. We do so much. Everything is a thought out process, discussed and researched. We try to take care of everyone as best we can, and that takes time and energy. It’s amazing I get as many wonderful volunteers as I do (past and present). I consider myself very lucky. And I can trust them with the server while I’m off doing my work in school, or at my internship. They are very capable people. We have a good crowd.

We recently hit 6k users. That is a lot of people. I am terrified to @everyone. It causes such a shitstorm. I avoid it if at all possible. Like the time we wanted to shift to ID Verification…omg that was insane. Everyone literally went nuts in protest. It was too the point that the admins and the mods were so overwhelmed that we decided to close the server for 24 hours to give everyone a break. People criticized us for this but in the 2 year history of The Haven we had never closed, so I thought we could afford to do it at least once.

On the one hand it’s annoying when people attack and protest the way that they did. One person told me I would be responsible for someone’s murder if they were stalked because of someone stealing their personal info from our database. I mean, I can’t make that shit up. On the other hand, it shows that people are really passionate about the server, and that is actually heartening in a way. Shrug.

Anyway, those are my early morning thoughts today. Thanks for reading. :))

A Fight Against the System by Roythebin

Chronically Roy’s Blog

This is going to be a long one, so buckle up.

As I’m sat here, I am writing to you about the past 15 months of my life. The 15 months I have spent battling the system that is the UK, Personal Independence Payment (PIP). This exact system has had a deeply, irreversible effect on my physical and mental health. How it has led me down a path of self-destructiveness, and overall affected my wellbeing.

15 months ago, July 2018, I put forward my change of circumstances form as both my physical and mental health has deteriorated. I suffer with a condition called Ehlers Danlos Syndrome (EDS), a connective tissue disorder that as a side effect causes my joint to dislocate extremely easily, and effects the way my internal organs work (or don’t work). EDS also comes with a sweet handful of co-morbidities. For example, I suffer from an umbrella term condition called Dysautonomia, more specifically Orthostatic Intolerance – Postural Hypotension, meaning, when I stand my blood pressure doesn’t know what to do, therefore drops to a dangerously low pressure, causing my heart rate to spike to try and keep my blood pumping up to my brain and heart. Because of this, I am at risk of blacking out, making me a fall risk. I am now dependent on crutches and part time wheelchair use to get around. Alongside this, I have a mental health condition called Emotionally Unstable Personality Disorder (EUPD) (known in the US as Borderline Personality Disorder or BPD), causing me to have extreme, rapidly changing emotions, which often leads to instability and impulsive, destructive behaviours.

Now we have the medical shenanigans out of the way, let’s talk about PIP.

I would like to talk about my dehumanised, unfair, and triggering experience battling through the system. Once I had filled out the long, long form once more, I was invited to a face to face consultation, where mine happened to be with an ex Accident & Emergency Nurse. When I heard her tell me this, I naively felt at ease, as if I had someone who would truly understand my pain, struggles, and conditions. Oh, how I was wrong.

During the consultation, you are supposed to be asked questions about your daily living, your mental health, and your physical conditions. You should be asked to perform some basic tasks on your upper body and lower body, and then given enough time at the end to add anything the assessor missed. This was not entirely the case in my experience. Although I was asked a bunch of questions, when I received my notes back, my words were not recorded correctly. I was made out to be a liar, and she massively downplayed my symptoms. She stated that there was nothing wrong with my mobility, and because I was clued up on my conditions, I was healthy. She stated I had normal range of movements in all of my joints (the whole definition of EDS is that this isn’t the case), and she had written because I was well presented, there was nothing wrong with my mental health, including writing down that my self harm was just superficial scratches, despite me wearing trousers and a jumper hiding most of the scars and marks. Because of this, I was denied PIP and my payments stopped instantly.

This is where it all began to unravel in front of me. This is when I began to appeal the decision.

Upon reading these false statements, my mental health instantly set a match. A match that lead me into a 15-month long self-destruct. Reading the statements, she wrote about my mental health being fine and my self harm being ‘superficial scratches’, which triggered my destructive behaviours, causing my self harm to increase in severity and frequency.

When I initially appealed the decision, I was instantly sent back a form of dismissal. Within the space of a week, they had apparently taken my appeal to the board, and decided that the assessor was correct, and my PIP was once again refused. So, I decided to give myself a voice. I decided I had the fight in me to take the case to a tribunal. Take it to court and let a panel of 3 independent assessors (A Doctor, Judge, and Medical Liaison) decide what was best. This is where the 15 months wait comes into play.

The 15 months wait took a toll on my mental and physical health. I saw a huge and dangerous increase in my self harm, causing 4 suicide attempts, and multiple hospital treatments for burns. My mental health was hitting rock bottom, and it all felt completely out of my control. My physical health was deteriorating in front of my eyes also. I was experiencing more and more dislocations daily, including A&E visits for thumb dislocations that didn’t relocate properly. I can no longer walk long distances, so I bought myself a wheelchair, which I am still learning how to self-propel, and I am blacking out more and more, including blacking out on the stairs a few weeks ago. It was seriously unhealthy, and dangerous. The stress, pain, and decline which wasn’t helped by the cruel words of my assessor, and the stress of the whole situation.

After waiting 15 months for a Tribunal date, I thought once the time arrived I would start to feel better about the whole situation, about the fact that I finally have to time for my voice to be heard, but that was far from the truth. The truth was, I was terrified. I was hurt. I was in a fit of panic for the weeks leading up to the date. I didn’t know what to do, because once again, I feared my words would be twisted and used against me. I was wrong.

On the day of the hearing, 15th October, I attended the Tribunal centre with my Mum. I was an anxious wreck, but she did everything to help me remain calm. Before I went into the room, a lady came out to me and talked me through how the day would go. She told me that the panel had read my report, and gone through all my supportive evidence that I had sent in. She told me who was on the panel, and briefly explained how things would go. This is how it worked out:

The Judge: He was there to open the tribunal, ask some brief questions about myself, who I was, and who I had with me. He explained how the next hour or so would pan out and was there to ask anything he felt was missed by the others on the panel. He was here more as a formality.

The Doctor: He was there to ask me questions in relation to my health conditions, he spoke to me about EDS (which he had clearly researched). He asked me what joints dislocated and asked me about my walking aids. He sympathised when I told him about the dislocations and stated ‘that must be excruciating,’ which I agreed. We then went on to talk about bracing and other assistive devices. He asked me about my Postural Hypotension, and what risks that causes, for example, fall risks. He was very detailed with his questions, which honestly, given my previous experience, I was skeptical of the whole conversation, going over, what could be used against me, but I had to be honest, all I could do was be honest.

The Medical Liasion: She was there to ask me questions about my day to day living. She asked about my ability to cook and use utensils, how I struggle with holding things because of my fingers and hand functions due to EDS. She asked about assistive devices I use such as large grip jar openers and perching stools. There were questions on how I clean around the house, and what support I get from my parents at home. We then went onto how I get out and about, if I go places alone, hang about with friends, etc. It was at this point where I broke down a little. You see, it’s not often, if at all, that I go out alone. I am almost always with someone, be that my mum, or my partner Hanii. I got overwhelmed by this question because it is a huge ass reality check. I have grown up as the kid no one wants to go places with because arranging things for me and my health conditions is just too much hard work to able bodied people. Most of my entire support network is based right here, online. I cried, like, full on ugly cried to the panel at this point, oops. She then asked me about my personal hygiene, how I bathe and about my use of catheters to pass urine.

After all of these questions were asked, my Mum and I were asked to head out to the waiting room, as the panel gathered up the evidence and what was said and set about making a final decision on my case. I’m not going to lie, this felt like the longest 15 or so minutes of my life. I was shaking, holding back more tears, and just generally doubtful that the decision would be made in my favour. I was expecting the worst outcome possible, that they didn’t believe me and would further invalidate my struggles.

When we were called back into the room, we went to sit and the judge told us ‘it’s ok, this will only take a moment’, my heart sunk. Then, much to my surprise, they said the panel has come to the decision that they would be awarding me PIP. Honestly, I was shocked. I was in a state of surprise I never though I would feel; you know, like them videos you see where a child gets the surprise of a lifetime for Christmas? Well, that was me right then, I couldn’t have said Thank You anymore if I tried, I was overwhelmed with happiness.

So, the whole point of this blog post is to tell you that if you’re going through this currently, in the past, or in the future, you can fight this, and when you come out of the other end like me, this truly is all worth it. It’s hard, I’m not going to lie, but you are in no way, shape, or form, alone. The wait is a long one, it takes on average around 18 months to be seen at Tribunal level, on average 75% of PIP applications are denied at the first assessment. Those statistics are dehumanising and just plain wrong, but they’re the facts. As I was leaving, the lady who came out to me before the hearing walked us out and there, she told me, almost all cases that go to a Tribunal, win. That’s because those who fight for it, need and deserve it. If you don’t think you’re strong enough, let me hold you up with you get in there kicking and screaming. You are not alone.

For more content visit Roy’s blog: chronicallyroy.wordpress.com

Follow Roy on Instagram: https://www.instagram.com/roythebin/

A Collection of Poems by SelahNox

Inner worlds

A Phase

“It’s just a phase,” they said

when for the first time,

I washed blood down the drain

and tears from my eyes. 

“It’s just a phase,” they said

the first time I cried:

“I hate my life

and I want to die.”

“It’s just a phase” they said

when the thoughts in my head

became far too cruel

for my mother’s arms to mend.

“She’s just in a phase,”

the therapist lied.

“She’s still very young,

she’s going to be fine.”

It was still “just a phase”

when I was no longer a child,

and with SSRIs

I was soon quite wild.

“It’s not just a phase,”

college friends soon confirmed.

They said “you need to get help.

We’re getting concerned.”

It was not just a phase,

and it’s still my controller.

An angel with meds

soon called it Bipolar.

Friday Mourning

In the darkness I lay broken,

as the ashes fall around.

My hope shattered into pieces

on the unforgiving ground. 

Helpful strangers gather ’round me

slogans ready on their lips.

“Why can’t you stop and find some joy?

You should try to feel the Spirit!” 

But a bitter cold is blowing,

there’s no sun yet here for me.

Sunday, they say, is coming

on the Friday’s dark and deep.

I know that when that day comes,

I will laugh and shout, and leap.

But for now I’m much too lost to try,

so at the tomb, I wait and weep. 

You should know that I am ready,

for the darkness to retreat.

Don’t try to force my healing,

just stay and wait with me.

Ghosts

My ghosts live in your old bedroom

where you once laid your head.

They stand there in the doorway

and with my trauma, they are fed.

I greet them in the morning

and they torture me at night.

I can see them in the daytime

and the daze of purple lights.

I peeled colored paper off the walls,

and found scars still resting there.

I wish I couldn’t see them,

my mind is far too bare. 

We lived such different lives here,

so close, yet not at all.

We ran away into the world,

and in hard times, we fall.

I say that I don’t blame you,

I know it’s not your fault.

But when the night has gone too long,

tears and anger burn my heart.

I stare in your old mirror

at the splotches on my face.

And as the ghosts come near around me,

I learn to face my fate.