https://prismhour.betterworld.org/campaigns/or-die-amanda-needs-your-help
I’m here because I need your help to stay alive. I’m here because I have no choice. I’m here because I believe my communities will come through for me.
My Bipolar Backstory
In early 2022, I had to make the life-altering decision to euthanise my first dog, Pazu.
Pazu was named after the protagonist of one of my favorite films, Hayao Miyazaki’s lesser-known classic Castle in the Sky.
I saw his photo on the shelter of a local website and knew I needed to meet him. I showed my friend Daniel, who took one look at the photo and said “that’s awkward.” Yeah, he was. Pazu ambled into the room at the shelter and kissed me on the cheek and it was over. I knew we belonged to each other.
We had six beautiful years together, and those years changed my life. Things were fairly normal for the first four, then the situation changed. Turned out, Pazu had an incurable, degenerative spine condition known as IVDD. This led him to stumble on the stairs one day, after which he lost the use of his back legs. Pazu was fully disabled for the last few years of his life. I had help with him from partners, but I was his primary caretaker. I did everything for him, especially toward the end. I had to carry him up and down stairs, including to go to the yard to use the bathroom. He had to literally lean on me for support—sometimes I had to reach down and hold him under the belly to keep him steady. I did everything I could to improve his condition and give him the best quality of life I could. Until I couldn’t.
Pazu was so, so loved. I’d be lying through my teeth if I pretended that the last few years of his life weren’t intensely stressful for me as his caretaker, but I loved him until his very last breath. I held him and looked into his eyes while he took that breath. I think he knew. I hope he knew.
Why am I talking about Pazu?
Okay. Here we go.
Pazu’s death was the initial trigger that launched me into a manic episode that destroyed my entire life and lost me about 90% of my closest support network in the summer of 2022.
I have never recovered. I did eventually build a new life and a new support network, and I am immensely proud of myself for that. But it’s like my brain never came fully back online, and emotionally, part of me has been living in suspended animation ever since, paralyzed.
In May of 2022, two months after Pazu’s death, there was a particular incident that clued my therapist in to the fact that something was seriously different and troubling about my mental state. I had called her and left a voicemail because I was freaked out. In short, I believed that my deceased family member Benjamin was trying to speak to me through “signs.” I was experiencing psychosis for the first time without understanding it.
Experiencing psychosis is an utterly shocking experience, especially for the first time so late in life. When I try to explain what it’s like, I usually say something like: one day you wake up and the sky is blue, the grass is green, and your departed relative is sending you guidance and symbolism. The latter experience is shocking, but no less real in your mind than the first two realities.
I lost Ben to extremely traumatic circumstances when I was 17, and I believe this precipitated my very first hypomania. Here’s what I remember about that time. I remember barely being able to look at him at the funeral home. I remember pieces of the funeral. I remember my mom telling me I was sobbing in my sleep in the hotel room afterwards. I remember asking her “does it ever hurt less?” but I don’t remember her answer. She lost her own father in her twenties and dropped out of college, never to return.
I returned from Ben’s funeral in Iowa and I distinctly remember that part of me seemed to just shut off. As soon as I got home, I couldn’t connect with any of the grief—it just didn’t feel real to me. I wondered if there was something wrong with me, felt I must somehow be lacking in empathy. I now recognize this as dissociation, a kind of fracturing that happens in the brain when we experience something so shocking our brain forcibly creates distance between our emotions and the traumatic event we’ve witnessed.
This is the origin of Post-Traumatic Stress Disorder (PTSD). In the simplest terms, when we lack a way to integrate a traumatic event into our brains, it gets “stuck” in our bodies. From then on, if certain events trigger that unprocessed memory, our body believes the traumatic is still actively taking place and launches into action to get to safety. It is simply a misfiring of a natural instinct for self-preservation.
Instead of grief, what I felt, what I thought, was “this incredible person is gone from the world, and it’s now my responsibility to fill the void he left by doing amazing things.” As a senior in high school, I became obsessed with applying to colleges. Specifically Brown University. I memorized Brown’s crest and doodled it everywhere. I think I applied to maybe 12 - 15 schools, far more than average or necessary.
We don’t really understand mania. We don’t really understand bipolar disorder or schizophrenia. We don’t understand enough about the complex human brain yet. So I think this is a rich time to add anecdotes and educated guesses to the discourse.
I think that my intial hypomania in 2009 was triggered because Ben’s death was so shocking to me, that as a kind of defense mechanism, my subconscious brain launched me into a forcefully optimistic, project-oriented state (feverishly applying to colleges so I could “do big things in the world”) to keep me sane and safe.
I think it’s very likely that bipolar mania, at least in my case, is a kind of PTSD response, a prolonged type of fight-or-flight. Fight-or-flight usually crops up in response to a tangible threat: there’s a tiger in the room? Okay, our body is shifting gears in order to fight the tiger, hide, or get outta there. There are tangible ways of dealing with the problem of an active predator.
But what about when the threat is more existential or complex, something non-physical, something that it takes more brainpower to deal with? Something like grappling with huge questions of life and death? That, I believe, is when mania can kick in. And when it kicks in once, it powerfully rewires the brain to make further manic episodes more likely.
I believe that losing Pazu in 2022 brought all of my unaddressed trauma from the loss of Ben back to the surface. I tried my best to prepare for losing Pazu, but there’s only so much you can do. And there’s a unique horror in being the one who had to choose to end his life, even if it was in his best interest.
“When you kill, you die too.”
On top of that loss, there was also: the breakups, peer support training, my sister’s wedding at my childhood church, the absolutely egregious school shooting in Uvalde, Texas, several monumentally stressful encounters with the ex who broke up with me at the beginning of all of this, and then the overturn of Roe—and if you remember, the discourse at the time was “maybe they will also overturn gay and interracial marriage, maybe this is the end for those of us in certain groups.”
To say I was stressed is a gross understatement.
The Involuntary Hospitalization
At the outset of my mania in 2022, my support network of friends really stepped up for me on every level, from cleaning my bathroom to using their personal connections to get me appointments with doctors for medication management. That is, until, behind my back, fearing for my life, health, and safety, they decided that I wasn’t getting help fast enough. Two of them decided to submit a Pennsylvania 302 petition to have me involuntarily hospitalized, with the support of the rest of the group.
I won’t sugarcoat any part of my experience, especially the reality that something gets irrevocably broken in a relationship when you employ carceral systems to override someone’s autonomy. Especially when you, yourself, are an abolitionist. However, I recognize that they, too, were working within an incredibly broken system, to provide the kind of support they felt was necessary. Part of why I want to stay alive and keep talking about this is because I have really important perspectives to share about mania and how to support loved ones in altered states. Beyond that, I have very big, very doable suggestions on how to utilize peer support more widely to address gaps in our western mental health systems.
After the involuntary hospitalization, I consulted on an article about the experience with Public Source. I’ve heard that one of the two who submitted the 302 said it was the worst day of their life. Me too. And then multiply that by 30 days (in a month) and then by 8, the number of months I spent living with my parents as a 30-year-old. I lost all ability to function. Couldn’t cook. Couldn’t clean. Couldn’t pay bills. Spent day-in, day out in bed in trauma-fueled flashbacks, reliving everything that had happened to me.
Before any of this happened, I was fairly on top of my life, at least logistically. I started my own software business in 2018. I wrote the code, made my little app pretty, did the marketing. Eventually brought my then-romantic-partner (Pazu co-parent) on as a business partner. At our peak around 2020, we were making about $200,000 a year as coding bootcamp grads. I did our taxes. I signed us up for healthcare through the government marketplace. My credit score was perfect and had a long track record of perfect payments. I worked out the logistics of buying our old house. I was the one whose name was on the title.
Is on the title.
Why I Need Help
My old house is still sitting there empty. It’s the number one thing I’m the most stressed out in the world, of the many things I’m stressed out about.
Let me lay those out for you.
First, my financial situation is in absolute shambles. There’s some research that mania causes brain damage, and I think this may have happened to me. It’s been almost constant brain fog since 2022 for me. I’m sure that COVID and a long period of isolation did nothing to help. I’m struggling to think, organize, plan. I used to be on top of things, but now my ability to create a plan of action and execute it has almost entirely dissipated. I need to rent or ideally sell my house, but I can’t even work a full-time job.
Let me paint a picture of what it’s like to try to work a normal job with a mental health diability of this flavor.
Last year, I had a full-time job with the Carnegie Libraries of Pittsburgh as a Cataloger at the Library Support Center in the West End of Pittsburgh. It was very low-stress and fun, and I really liked my coworkers and boss. The only problem is that my antidepressant, a pretty rare old one that works well for me, was giving me major insomnia, and I had to be at work, in-person, at 8am everyday. The library was part of a big city library system with frankly, incredibly punitive rules of the kind I haven't seen since I worked in food service and retail jobs when I was younger. If you clocked in at 8:08 or later, you got "points" against you, which would lead to being "written up," verbal warnings, and eventually suspension. All of these things were happening to me. Before I was self-employed, I’d worked at a very chill marketing agency where I set my own schedule, so I was extremely out of my element with the strictness.
I got a doctor's note from my psychiatrist and started an ADA accommodations process. The conversation I had with the ADA accommodations representative was fairly belittling and humiliating. Honestly, I didn't want to disclose the bipolar directly due to the stigma—it should have been enough that my doctor noted my need for sleep. But not acknowledging led to weird questions along the lines of "well do you think this insomnia is something you'll just be able to get over eventually, or...?" So, frequently, we have to make the decision to either have our needs diminished, or to fully disclose our disability and deal with all of the resulting stigma.
All I needed was to reduce my hours from 40 to 30-35 so that I could come into work a bit later. Apparently this was super complex and impossible ask. Specifically, I was told that positions fell into two categories: “full time” or 20-25 hours per week.
A few weeks into this process, I got called in for a "verbal warning" because I had been clocking in from my phone to avoid these punitive rules. Mind you, this was something no one ever told me I wasn't allowed to to.
At this point, for months, I had been running myself ragged and putting myself at risk of triggering an episode; lack of sleep is a major trigger. Rather than set up the meeting for the verbal warning, I sent what I think was a polite but very firm email quitting effective immediately and explaining why, and walked off the job during lunch. $15/hour isn't worth sending myself into mania.
It's almost impossible for bipolar people and those on the schizoaffective spectrum to find work that pays enough to live on, is low-stress enough to avoid triggering episodes, and has the kind of flexibility we need when our mood goes haywire when it inevitably does. It's a crushing existence.
Something like one in four of us, but maybe as much as half, will attempt suicide in our lifetimes. Of those, aboout one in four will succeed. These statistics are all related.
I’ve spent 31 years trying to hack it in a world that was never built for me.
I. Am. TIRED.
For all of the above reasons, I am an excruciating amount of debt and my once-perfect credit is shot. If I don’t get help soon, I’m looking at bankruptcy. Here are the full details.
The only reason my net worth is in the positive, according to Mint, is the appreciation on my house, which I bought for $80,000 in 2017. Also, I think my student loans (~$50,000) are not included in these figures.
And the thing is, it’s specifically trauma from the events of 2022 that have prevented me from selling my old house.
The police came while I was in my safest place, relaxing in my hammock chair on the back deck, and forcibly took me from my home to the hospital. They held me there for a week and I was one day shy of missing my only sibling’s wedding. My parents had to come and lobby the doctor for me to be allowed to be allowed to be discharged to attend. I went from the hospital, to my parents’ house, to the wedding rehearsal the day I was released. I went to the wedding. I gave a Maid of Honor speech.
I am going to write a separate article about everything that happened during that manic episode, the hospitalization, and afterward, because it’s too much to go into detail about here. But know that: no, in spite of intention, the hospitalization was not the right move, it was not helpful, it was the worst trauma I have ever experienced. The hospitalization and the abandonment by my former support network afterward brought me closer to suicide than I have ever been in my life, and I am only here to write this because I couldn’t do that to my parents while living with them.
The first few times I attempted to return to this house after I was hospitalized, I would literally shut down. My parents were with me. I would sit on the floor and cry, or need to go out to the back deck for air. I could only stand to be in the house for one or two hours at a time.
I made an attempt to stay in the house again by myself for a week in November 2022. Again, I ended up paralyzed, glued to the couch. I had to return to my parents’ house because I recognized that I was at serious risk of harming myself physically by staying in that space any longer, even passively—maybe just by not eating or drinking.
The house itself is a mausoleum, a Manic Episode museum. Other than the essentials I’ve needed to remove as I’ve lived elsewhere, many things are still in the exact same locations they were left when I was hospitalized.
My Asks: There are Many
Obviously, I’m writing because I need financial help. Our system of capitalism means that finding lasting safety without financial stability is almost impossible.
However, I need a lot more than just financial help.
Suicide prevention is so much more than “call 988,” crisis-mode-style intervention.
I want to be clear: I am not suicidal whatsoever! I’ll get to this shortly, but I have never been more excited about life and determined to continue living it.
I’m just being honest: I’m sharing all of the data and statistics because my prognosis is not good. It’s likely that bipolar disorder will orient the flow of my existence for the rest of my life in this body, and we live in a country with very few social safety nets.
I’ve already applied for disability. My interview is scheduled. It takes a minimum of 6 months to hear back once you’ve applied, but it frequently takes multiple attempts and a good lawyer to actually receive benefits, and you barely receive enough to live on in the end anyway. Not to mention, if I ever want to get married, it means losing any disability income.
None of this is inherently a death sentence, but it does mean I need a Village to survive. Not just right now, but forever.
There are specific needs I have outside of the financial:
Prime directive: I need a bipolar/autism/ADHD specializing neurodivergency coach or peer specialist to help me map out my life and organize the proper steps to take. I need someone who will take direct action to connect me with the professionals I need access to (e.g., therapists, psychiatrists, doctors, etc.)
I need full neurological testing and neurodiagnostic testing.
I need to get glasses and go to the dentist for the first time in a wayyyy too long.
I need someone to help me manage my social media, because it is both overwhelming to me and a space where there are innumerable opportunties to access those with the ability to provide further support—several of whom I have already connected with.
I just need good, kind people in my life in general who are willing to jump in on other care tasks as necessary.
Let’s Talk Generational Wealth
I have somehow ended up surrounded by very kind, intelligent individuals who come from generational wealth, while I do not. My mom is in her 60’s, my dad in is 70’s. They both still work. My dad is an interpreter for the deaf, a late-in-life career pivot from office-worker drudgery that taught me a lot about the possibility of making changes in your life at any point when you’re unhappy. My mom works an active physical labor job cleaning houses for elderly clients. She’s friends with all of them, and makes them food and cookies etc. over the holidays. They’re both the most caring people I’ve ever met.
My sister is a CNA and just gave birth to her first child, my niece Aurora. Her husband is working full-time running his own shop as a mechanic and also in school for aviation. When my sister’s maternity leave runs out in April, my mom will have to temporarily give up some of her work to take care of Aurora while my sister works.
At one time, I was in a prime spot to be able to help my family. My mental health disability instead means that at an age where I should be taking care of my family, they have to take care of me. I’m grateful they are willing and able to do so. I love them as deeply as it’s possible for any child to love their parents, and I know my sister feels the same. It’s also humiliating and frustrating and infuriating. They deserve to relax and feel safe for the first time in their lives, enjoy their grandbaby. Not worry about me.
So I am asking for your help. I am asking for your care. I am asking for you to boost this. Doing any of these things makes you my ally for the rest of my life.
There’s one last piece before I’m done.
I have a lot to offer the world, and I think you wouldn’t have read this far if you didn’t know that. The trouble is, in order to offer my best with my configuration of brain settings, it’s like: the stars and planets have to perfectly align. I need to be and feel so safe. I need a lot of security and support.
Here are some statistics re: my social media figures recently:
And, from 2022, the most popular thing I’ve put on the internet: a cover of Bo Burnham’s “That Funny Feeling.”
I have the opportunity and connections to build a platform in this world. I intend to use that platform to lift up anyone in my life who has ideas to share.
Beyond fundraising, I have several plans for my financial stability going forward. The most concrete in the short-term:
I will be adding a paid tier to my Substack (where you are reading this). I’ve received a moderate influx of new followers from the campaign to save Our Flag Means Death and I think this might end up being a not-insignificant source of income. I have about 5-or-so essays in the works and I’m thinking about new ones all the time.
I want to start my own Patreon, which I aim to offer as a peer support hub with a particular focus towards content creators, “influencers,” and those in high-visibility, high-stress careers. I think I already have some buy-in from certain mental health professionals to help with this. I think learning about the psychological needs of this group is one of the most important needs of this era.
I would like to continue further professional training in the peer support field. Specifically, I’d like to get the credential to train other peer support trainers.
I want to keep making music!
I want to find an in-person part time job in the meantime because it’s good for me. I was actually looking into county jobs within Sara Innamorato’s new administration.
I’m only bold enough to do this because I know my own intentions: I’m not here just for myself, I’m here in service of the causes and communities I care about. To reiterate and round up, those include but are not limited to:
Those with physical and mental health disabilities, especially those on the bipolar and schizophrenic spectrums.
The Our Flag Means Death community. 🌈🏴☠️💖🌻
Social ecologists and living revolutionaries.
Progressive faith leaders like those affiliated with Q Worship Collective.
Cooperatives and the intentional communities movement.
I want to keep writing and creating, and I want to build a platform I can share with others. Beyond that, I want to create a manual for anyone who has thoughts and ideas they want to put into the world. Figuring out how to utilize social media as a values-driven person can be a weird and inscrutable endeavor, and I want to share what I know with anyone who wants that information.
Finally.
I am writing this, now, in a hypomanic-on-the-verge-of-manic episode. On Saturday morning 2/10/24, I am going to check myself into the local psych ER. (Not this particular one though, fuck UPMC.) The stress of recent events, including a public harassment campaign lobbied against me and others in the #SaveOFMD campaign, has triggered my bipolar disorder to the extent that the scary physical symptoms have started to take over, like being unable to sleep or eat. I’m doing this because I take my diagnosis seriously and I want to stick around to keep doing the things I care about.
Before I end here, I will return to the beginning.
Pazu gave me the courage to do any of this.
The thing Pazu taught me is that just in existing, you are enough.
“You are adequate.”
You are valuable. You are worthy of love. And people will love you even if you feel like you’re not doing enough. Even if you need a LOT of support just to survive.
Many of my best moments with Pazu were spent side-by-side on the couch, just sitting right next to each other. He didn’t have to perform. He didn’t have to do anything. I will love him for existing for the rest of my life.
For anyone who feels like a Pazu: I love you too, in the same way, and I will spend the rest of my life fighting for your right to exist and get the care and safety you need. You deserve it. I do too.
https://prismhour.betterworld.org/campaigns/or-die-amanda-needs-your-help
Thinking of you on Feb 11th -- wondering how you are doing after checking yourself in. I, too, am on the verge of bankruptcy -- loaded with debt from a husband who abused my credit cards & over-spending while hypomanic. My credit, too, used to be perfect. I took so much pride in that. Now it is about as low as it could get. I believe in you. I want to be here for you. Always reach out. I'll do the same -- if that's okay with you. I think you have my number but I'll text you just in case. This divorce from my abuser, who you helped me see was an abuser & it wasn't my fault all those months ago, is a train wreck. I'll always adore you for the way you helped me navigate those thoughts I had & for telling me about reactive abuse.