How to Be Average

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I got better with medicine and therapy. Coping skills were there and played an enormous part, but I don’t think I could have done it without professional help. In fact, psychiatric medication has saved my life on many occasions: many.

But what do I say to my readers who don’t have access to medical care? You’re screwed? Give up? There’s got to be a better message than that.

So I’m on a journey to find out how someone without access to doctors or therapists can make their lives better. Some health problems never go away. You’ll either have a good day or a bad day, but you’ll still have the problem. While this is not true of all people’s anxiety and depression, it’s definitely true of my disorders.

I’m taking a class through my therapist’s office on DBT, Dialectical Behavioral Therapy, and I’m slowly being cured. The borderline reactivity and feeling and fear that I’m being dismissed or abandoned by my loved ones is curving more toward the resolution of a lifetime of problems.

Accidental abuses. Accidental injury. Unpurposeful invalidation. It hurts so badly, and I have no choice but to send text message after pitiful text message to the person who “is irritated by me”. I know it’s not cool. But my body feels ready to explode if don’t know beyond a shadow of a doubt, that I am forgiven and will not be forsaken. I HAVE to. HAVE to. No choice. Period.

I often feel like a terrible person. The most comforting thing I’ve heard since 2019 (it’s 2023 as I write this) is my Dad’s response to me desperately begging him to tell me whether or not I was a bad person. It was the night that I kicked out Chris, my 7-year, biggest of my life relationship with a less-than-good person, forever. His response was priceless, and I think of it often. He said:

“I, obviously, am very biased. But I think that by any objective standard, You are at least Average or Above.” -John

I felt so seen and so validated. I’ve repeated it over and over. It helps so much.

Because when you’re not good enough (in your own mind) to count as a good person, it’s much more realistic to be “Average or Above.”

I’ll be average or above any day of the week.

 

 

By the way:

Ya done good, John.

Thank you.

 

Thoughts? I will listen.

We’re Not Bad, Just Problematic

What do you do when you feel completely misunderstood and you see a wave of public sentiment turning more sour on your diagnoses with every passing day?

An online person who will remain anonymous is in a manic episode that needs intervention, but even if she doesn’t get intervention, it’ll resolve on its own, even though it will take a lot longer to get there. The concern is in how much damage a person can do to their life in the time before the comedown.

Mania is exhausting, there’s just so much going on. You believe fantastical things, and in the moment, they are so purely true. You feel enlightened, like you just learned the secret to living a good life.

Everything is so clear and right and true, and you wrap it around yourself like a blanket and move forward with whatever plans you may have to make your idea a reality. You can make or do or accomplish absolutely anything.

The truly unfortunate thing about mania or hypomania is the damage you do without being aware that you did it. It just makes you look like an asshole and then you can’t even explain what you meant to say or do, and then it just sounds like an excuse to be an asshole.

Bipolar and borderline personality disorder do not only create bad people. Some people are just bad people, regardless of reason.

Whether the moods are from bipolar (BP) or borderline personality disorder (BPD), they are almost unbearable in intensity. You know that feeling in your gut as you speed up and fall from the top of a roller coaster when your stomach drops out? That happens to me. Physically. And instead of screaming out, I’m expected to be acceptable and not even yelp.

Having bipolar (BP) or borderline personality disorder (BPD) does not make you a bad person. And if you’ are a bad person, your mental illness is not the complete explanation for why you are the way you are.

Borderline (BPD)e is very intense, but we can make very loyal friends, lovers, and partners.

Please don’t discount us as real people who can be kind, loving, creative, supportive and loyal friends and partners.


Thoughts? I will listen.

Keep Starting Over! Goldfishpainter in 2023

If you need a change, start your brain over. Start over your day. Your emotional responses. Your year. Your goals. Approach an old problem or new opportunity in a freshly reset brain. A fresh brain is a calm brain, waiting to be filled up with new ideas, feelings and solutions. There is no limit to how many times you can start over in a day.

 

I pursue something as far as it’s healthy. I get easily overstimulated, and overstimulation leads to overwhelm, which leads to bipolar episodes. These episodes are characterized by extremely unpleasant feelings, physical issues with speech and physical regulation, as well as dramatic mood swings. This is then followed by a dive into a depression so deep that all I think about is how all of my problems would be solved by suicide and how appealing that sounds. After a couple weeks, I wind up in the hospital to treat a major bipolar episode.  At that point, I’m forced to make a change in my assessment of what my reasonable goals are. I am always learning.

 

This is my disability. I’m disabled from the assortment of mental disorders I have. I simply can’t handle very much stimulation. This is why I can’t work and have dropped out of college. Workplaces and college campuses are constant stimulation. It took many years of effort to accept that I’m not built for the physical and mental requirements of college and capitalism. I started over and started over, and eventually I found my boundaries. But it took all those restarts to learn, and I wouldn’t have had any hope to even keep trying without utilizing the idea of starting over.

 

I’ve let my work on the website fall by the wayside since 2020. It was simply too taxing. I haven’t done a thing til recently, and I feel ready to start over on the site. I am doing some sprucing to it right now, because I needed to re-examine my mission statement and intentions. I’m keeping the old material, but I’m finally (hopefully) fixing some old problems with the page layouts, and I’m hoping that I can get back to writing and tending this garden in the hope of reaching people who might benefit from things I’ve learned. 

 

Through hard physical and emotional labor, learning, and trial-and-error, I have come to suffer less, and live a mostly manageable life. I want to hand out shortcuts to anyone who needs relief. It’s always worth your time to try to reduce your suffering.

 

Welcome to new and improved Goldfishpainter.com! Take a look around.

 

Thoughts? I will listen.

We’re Not Evil! I promise!

What do you do when you feel completely misunderstood and you see a wave of public sentiment turning more sour on your diagnoses with every passing day?

There is an online person who will remain anonymous, currently in a manic episode that needs intervention. Mania often needs hospitalization to get the meds balanced as fast as possible. But even if she doesn’t get intervention, it’ll still resolve on its own, even though it will take a lot longer to get there. The concern is always how much damage a person can do to their life in the time before the comedown.

Mania is exhausting; there’s just so much going on. You believe fantastical things, and they are so purely true. You feel enlightened, like you just learned the secret to living a perfect life. Everything is so clear and right and true, and you wrap it all around yourself like a blanket and move forward with whatever plans you may have to make your idea a reality. You can make or do or accomplish absolutely anything

The truly unfortunate thing about mania or hypomania is the damage you do without being aware that you did it. It just makes you look like an asshole and then you can’t even explain what you meant to say or do, and then it just sounds like an excuse to be an asshole.

Bipolar and borderline personality disorder do not only create bad people. Some people are just bad people, regardless of illness.

The moods from bipolar (BP) or borderline personality disorder (BPD) are almost unbearable in intensity. You know that feeling at the top of a roller coaster when your stomach drops out? That happens to me all the time, prompted by my emotions. Physically. And instead of screaming out, I’m expected to act acceptably and not even yelp.

Having bipolar (BP) or borderline personality disorder (BPD) does not make you a bad person. If you’re a bad person, your mental illness is not the complete explanation for why you are the way you are.

Right now, it’s fashionable to blame all bad behavior on mental illness, and that is a BAD thing. The disabled do not need more prejudices against their disorders. Please don’t discount us. We are real people who can be kind, loving, creative, supportive, and loyal friends and partners. Borderline (BPD) is very intense, but we can make very empathetic loved ones. And bipolar (BP) can be managed with medication and therapy. It’s not easy, but it can definitely be done.

I ask that you not blame all bad traits you see in others on mental illness. And take pause when you hear or see someone else ascribing labels to people they do not know. I don’t want “bipolar” or “borderline” to become catch-all explanations for someone’s bad behavior.

 

 

One Reply to “We’re Not Evil! I promise!”

  1. Pierre Öster says: Reply

    Keep rockin’ it! Good articles / Sweden.

Thoughts? I will listen.

Welcome to the Alliance of Pissed-Off Leftists: Stand and Fight!

By Emily

(@goldfishpainter0 on tiktok, @goldfishpainter on tiktok, Insta, Facebook, and twitter)

Alliance of Pissed Off Leftists is a friend to all people who want to fight the  ::deep sigh:: fucking Civil War. 

The Alliance of Pissed Off Leftists is a group of people currently gathering on social media, who are ready to take action to save the nation from the rising red tide of fascism.

#APOL needs ideas, leaders, content creators, and most of all, people who are willing to post on their own social media.  I want this group to engage with local human rights organizing efforts, brainstorming, workshopping ideas, and no one is obligated to do ANYTHING.

Don’t hurt your mental or physical health (#mentalhealthinphysicalhealth) with any of this. I only want people to give what they can, where they are, with what they have. This includes myself. I won’t be the person in charge once this gets going. Ideally, we’ll have many, many leaders, and the power of APOL will remain decentralized among the group. 

There will be plenty of need for people who just want to share messages with their followers, make videos to rally people, videos to inform people, videos to inspire people! Or just comment to boost posts. 

Anyone who wants to lead a direct or indirect action for the purpose of fighting fascism is encouraged. Just let me know, and I’ll throw the weight of APOL behind it. That’s the idea for the group: anyone with a good leftist idea has a premade social media army they can call on to help amplify, and we become many voices added together.

The fight we’re taking on will be largely fought online. Think the teens who all reserved seats at the Trump rally and no one showed up. Or filling your online carts with thousands of dollars of merchandise and just leave it in the queue during a strike. Or programming clever things, like bots.

It’s great to get involved locally, go to rallies or marches, get the vote out in May and November and support progressive politicians, and we NEED that. But most people don’t have the ability to volunteer. Alliance of Pissed-Off Leftists allows you to be as engaged or disengaged as you want, since you have the option to just use social media if that’s your level of engagement!

Alliance of Pissed Off Leftists is focused on spreading and amplifying all antifascist messages online, on all social media platforms. No one owns us.

If all you do is amplify someone’s message, you’ve contributed. There are no obligations here. We each fight where, when, and how we each choose. And in this dark time, we need to mind our own mental health with vigilance.

Right now, I’m putting this up on my website, since I have it already built. My original mission for the site was help people with mental illnesses live meaningful lives, in as little pain as possible. In light of the new civil war, I’m pivoting to what seems more pressing.

I’m not trying to sell anything, I just needed a digital home, safe from community guidelines violations. Please use the comments feature on this article to post ideas for what potential actions we could take, any big thoughts, opinions, plans, or feelings! Let’s build a network here so that when social media is taken down, we will still have the collective via email. Going through my website comments also allows me to collect contact info so I can easily send emails to everyone.

Anyone who has a burning desire about something, speak up! Opinions, advice, and constructive criticism needs to be shared, because I can’t do this alone, and right now, I can do the gathering of people, but I need other people to come up with good ideas! Go ahead and speak up in the comments. Right now, we need collective brainstorming and warrior-gathering.

I am disabled and will need people to step up to organize efforts if my health goes South. I’ll fight as much as is safe and reasonable for my mental health. PLEASE do the same.  If you have to drop a project or commitment in favor of your mental or physical health, DROP that sucker!

Community organizing should always end with an Ask. So my first Ask is that you sign into my contacts form so that I can start gathering names. Bonus points if you have something to say! I’m especially interested in ideas about how this alliance can be better organized and utilized. All brains on deck!The second ask is that you spend some time thinking about what you could accomplish with a large tiktok exposure. Imagine you’re leading a very clever tiktok army, and you can use the power of social media to fight for our rights, and against authoritarianism and fascism.

The Alliance of Pissed Off Leftists does NOT daccept donations. Please donate to the ACLU if you’re so inclined.

Donations do NOT go to the Alliance of Pissed Off Leftists!

They go to my personal Paypal! 

 

 

One Reply to “Welcome to the Alliance of Pissed-Off Leftists: Stand and Fight!”

  1. Vincent Elliott Ridenour says: Reply

    vinelliott@gmail.com

    The situation is starting to seem hopeless but I want to do anything I can.

Thoughts? I will listen.

Happy Mother’s Day, Sylvia!

The light-grey clay I was so excited to be squeezing in my hands was cold. My momma sat next to me.

My hero, a true artist, taught me so many creative skills. Spread out supplies on the dining table and go to work creating. There was the Fimo clay, and I still have the tiny couch she made for my dolls. There was learning how to knit and wind a ball of yarn. Learning how to weave baskets from wet wood. How to arrange flowers in a vase. She made whole quilts. She made clothes for me and several times, she even made a matching outfit for my favorite doll. 

She drew and drew. She painted in watercolor and oils and acrylic. We’d go to the zoo together to sketch the animals in colored pencils. Sit, observe and draw. From 8 year old me till I graduated high school, we spent hours doing parallel art. I later learned that when I was sketching Bengal tigers and giraffes, my mom was sketching me. 

And in every art form that she taught me, she never once devalued the things I created. My creativity is reckless, and I’m sure that I made many errors. I always want to just pour everything out into the container of creation so that it can be dealt with and observed from outside of myself.

 

I told my mom I wanted to make a purse out of my clay. She said what I wanted was fabric, but I ignored her and insisted on shaping my clay so that there was a pouch of sorts. 

When I was done working the clay, she praised my work. Then she poked two little holes so that she could give my “purse” a shoulder strap.

She took it to a kiln, and it baked into its permanent, solid form. She bought a strip of strong faux suede and made me a strap for my purse, which she secured with many tiny X-shaped stitches.

I painted it with many uncomplimentary shades of green, then peach, brown, grey, and black. And no, it did not look attractive. 

But, as with every awkward creation I made in childhood, my mom praised it. 

She never once made me feel like the things I created were bad. She taught me to be creatively fearless, reckless, and passionate. She taught me that in art, there is no such thing as a mistake.

She taught me to harmonize by singing her own harmonies to songs on country radio, always a 3rd above the melody. I could sing this simple harmony by the time I was 6 years old.

She taught me to have fewer scary nightmares when I was 3, and thus, how to control my dreams.

She taught me how to take photographs in middle school, with an old-fashioned Canon camera with a removable telephoto lens and film that needed to be wound forward after every shutter click.

From when I was only as tall as her knees, she began to teach me how to identify birdsongs. I learned that chickadees say “chick-a-dee-dee-dee” and the cardinals sing “where-where-where- whatwhatwhatwhat” and the wrens say “teakettle-teakettle-teakettle”!

She introduced me to the great importance of knowing my local plants and rocks. I learned how to find worked flint, the remnants of ancient Native tools. By 1st grade, I was finding petrified wood in every gravel playground. 

I learned to work with plants. She’s still working on teaching me about the local versus invasive species.

Only an exceptional parent raises someone who, as an adult, still respects and cherishes their family. So many children are born to shitty parents. 

The special love I have from my mother and father is an important part of being stable. It’s a precious resource. My support system would collapse without it. 

A support system needs love and patience. I know that I’m often characterized by peers as being “too much”.

But she always listens. She always takes my side. She has been standing up for what she believes in for longer than I’ve been alive, teaching me that I, too, have a voice I can use to create change.

My mother is Superman to me. She saves people. She shares so much love with some, and where no love should be granted, she stands firm, fighting for human rights with fierce passion.

So Happy Mother’s Day to the best role model, my dearest friend, and my personal hero Sylvia Diane Krell Harrington! I love you so much.

I hope to always live a life that would make you proud of the way you parented me.

P.S. These are the lyrics to the Jann Arden song, “Good Mother”, that I have on repeat in my brain as I write this:

I’ve got money in my pockets

I like the color of my hair

I’ve got a friend who loves me

Got a house, I’ve got a car

I’ve got a good mother

And her voice is what keeps me here:

Feet on ground, heart in hand

Facing forward, be yourself

And I’ve never wanted anything so bad

Thoughts? I will listen.

That Damned Snake: An Essay on Pain

Written by Guest Author, Elliott Ridenour:

Like every day and night, I’m in a lot of pain. I’m not sleeping for about the sixth day in a row. Not to exaggerate, I have gotten a total of four hours over those six days. But there are lessons to be gained from pain. So instead of just sobbing (I mean I might do that too. There is not a thing wrong with crying, kids. It’s natural.) I just tried to study my pain. Understand it. Tried to see what it’s attempting to say. This is what I came up with and it actually helped me release some bitterness and hate I had toward this ever-present sensation.

Hello. My name is Elliott and I have to tell you, I’m having one hell of a time of it. A few months ago I made the decision to try to end my life. Rather than resulting in death, it resulted in a weeks-long coma, permanent damage to my body, and a nuclear explosion of heartbreak to everyone that matters most to me. 

These days I’m trying to find some sort of way to be, which has proven to be a long process. But one thing I have is an abundance of pain. Coming out of the hospital, I quickly saw that pain was not going anywhere. No level of narcotic could numb it. No amount of time would heal it. This was part of me now. 

Largely because I had no other choice, I decided I was going to learn from this pain. Everything terrible has lessons to pass on, and this teacher is the most persistent I’ve met.

I’m looking down at my leg. Not the only area in pain, but where it’s most focused. My leg is shaking and convulsing like an injured animal that has just been bitten by a poisonous snake.

Pain is a funny thing. It can drive you mad and it can make you strong. It’s horrible but we couldn’t survive without it. There is a condition called CIPA (Congenital Insensitivity to Pain with Anhidrosis). It is a condition in which a person is unable to feel pain. Freedom right? No evil pain ever!

But no. It is an extremely dangerous condition. Without pain these people have extreme injuries, infections, illnesses, and have no idea. A splinter can lead to septic shock or even amputation. See, pain is not meant to hurt us, though wow, it sure does. It’s meant to protect us. It’s altruistic. It tells us when something is wrong. When something needs to be done. When something needs to change. It keeps us alive. A constantly alert creature that is looking for danger and letting you know.

My pain doesn’t realize that nothing is trying to hurt me. There is no threat. There is no injury. My spinal cord was damaged and the nerves are simply confused. Nerves are very easily confused. 

The pain doesn’t know better. It is not trying to be my enemy, though I would call it one. It’s unintentionally causing further brain disorder as it doesn’t want me to sleep. If I sleep, I can’t pull the venomous snake off my leg. The one that might be there, anyway.

But sleep is when most neurotransmitters are replenished and when many vital brain processes occur. If I don’t eventually sleep my brain will simply run out of what it needs. That’ll be trouble. But my guardian has priorities. The brain will survive a bit longer. Pull off the damn snake. Which isn’t there.

But my pain sure is trying. He’s trying to help, he’s just confused. Now that, that is relatable. My pain-guardian is going through what I am. He’s trying so damn hard to do right thing. Protect the ones he loves. To make changes that will recover my health and ultimately save me. But it’s just too much. Pain is confused. But by God, he’s trying. 

I know you, Pain. I’m trying too. I’m trying so hard. Harder than I ever have in my life. But I’m confused. I can’t find the snake.

Pain, you’re killing me, causing me damage. I did that too. I was confused. I was trying. So hard. And I made the wrong move and caused so much damage. To my mind, my body, my heart, and more importantly to every single person that I care about and love most in the world. Tears were shed for me. I often see them crying for me while I was dead, my body maintained by ventilators and tubes. I know of each person that cried and I can see them.

Pain, we’re one and the same. You hurt me. I hurt me. I hurt others. How can I hate you? What can you do better? What can I do better? I’m lost. My nerve endings are lost. Just like every single soul in this world, I’m fucking trying, but I don’t have all the answers. Right now I don’t have any answers.

I forgive you, friend. You’re making the wrong move. I can empathize with that. I challenge you to find anyone that can’t. You’re as blind as I was, just trying to find that fucking snake. I don’t hate you. I can’t. You love me. Right now I don’t love me. I hate me. But you’re setting a great example. You think my life matters. You want me to make it out of this before the venom hits my bones. I don’t know if you’ll ever figure things out. I don’t know if I’ll ever figure things out. So let’s both keep trying. 

Because pain, you understand one important thing. Life is not winning. Life is trying. It is trying and trying and trying, win or fail. 

I’m not winning. I know that. 

But I’m living, dammit.

Many thanks to Elliott Ridenour, the guest author of this piece and an indisputably fantastic human being.

 

Thoughts? I will listen.

close up photo of white mice

I’m My Own Lab Rat

About twenty minutes after my 4 pm dose yesterday, I had a bad reaction to my most recently added med. It made me extremely dizzy, with spinning vision similar to the way things look when you’re so drunk that you’re about to vomit. I also felt like I was walking in reduced gravity. With every step, I’d sink through the floor a little and then bounce a bit above it, like an astronaut on the moon. Since I knew I shouldn’t be alone if I could fall and hurt myself, I reached out to my parents (who are a vital part of my support system) and went to their house. I brought a bag with me to stay the night if I needed to.

I felt better by 8pm. But I decided to stay the night.

Why?

Science, my friend!

I had an experiment to do, and while it could cause the dizziness to come back, it would also tell me what I need to do about the medication.

The scientific method has six basic steps

  1. Make an observation.
  2. Ask a question.
  3. Form a hypothesis: a testable explanation.
  4. Make a prediction based on the hypothesis.
  5. Test the prediction.
  6. Draw conclusions.
action balls black and white illustration
Photo by Pixabay on Pexels.com

My Observation:

I got very dizzy, bouncy, and spinny around 4:20 pm yesterday after taking a dose of Trileptal and Lamictal at 4 pm.



Question:

Why did this new medicine, Trileptal, make me dizzy?



Hypotheses: No, I didn’t misspell that! Normally in the scientific method, you only test one hypothesis at a time, but I had three that I could test all on the same day without muddying the water of my experiments.

Hypothesis 1: The med is simply and truly a bad match for me, and enough has built up in my bloodstream that now, every dose after this will result in worse dizziness.

Hypothesis 2: I took the doses too close together and had too much in my system at once (I had taken them only 2 hours apart yesterday).

Hypothesis 3: The Trileptal and Lamictal in my 4pm dose amplified one another and caused the dizziness (Lamictal is my other mood stabilizer). I was suspicious of the Lamictal because, in high doses, it causes a slightly similar effect on my eyes, and sometimes medications amplify one another’s effects.



Predictions:

Prediction 1: If Trileptal building up in my bloodstream caused the dizziness, it would mean that after I take my next dose (I take it 2 times a day) I would get dizzy again.

Prediction 2: If I was taking them too close together, that would mean moving my first dose to an earlier time would solve the problem, and I’d be fine at my 4 pm dose if Hypothesis 3 was false.

Prediction 3: Pairing Trileptal with Lamictal is the cause of the dizziness, and that means if I take an identical dose today as yesterday at 4 pm, I would get dizzy around 4:30 again.


scientists in laboratory
Photo by Polina Tankilevitch on Pexels.com

Experimenting/Testing my predictions:

Test 1: Take my first dose today and if I get dizzy, that means the drug on its own is affecting me badly, and I should (while consulting with my doctor) lower the dose or stop taking it.

Test 2: Take my first of the two doses at 12 pm, followed by a second dose at 4 pm. Yesterday, I took the two doses at 2 pm and then at 4 pm, only 2 hours apart. If I’m fine after taking the second dose at 4 pm, then the answer may be that spacing them out further solves the problem.

Test 3: Take Lamictal and Trileptal together at 4 pm, just like yesterday, and if I get dizzy, then Lamictal is the problem.



Conclusions:

Conclusion 1: I took my first dose and didn’t get dizzy, so the drug on its own is not causing dizziness.

Conclusion 2: Taking the two doses at 12pm (instead of 2pm) and 4pm does not cause dizziness, so this is the answer to my problem, once I know Conclusion 3.

Conclusion 3: Taking Lamictal and Trileptal together does not cause dizziness.



Solution: Space out the two doses of Trileptal to 12 pm and 4 pm instead of 2 pm and 4 pm.

Problem solved! God, that feels good.


photography of woman surrounded by sunflowers
Photo by Andre Furtado on Pexels.com

This kind of thinking is vitally important in a journey with any kind of medication. If you have a bad side effect, that doesn’t necessarily mean the drug is wrong for you. Sometimes the combinations or timing of meds may be messing you up. However, if the med is actually wrong for you, it has the potential to cause horrible effects.

I don’t really have any specific advice for when you should take/not take a medication, mainly because I’m afraid to give any. Psychiatric medications all have the potential to help or harm, depending on an individual’s body. Mental health, after all, is physical health. There is always a possibility for horrible effects in the wrong person, and I’ve had heinous experiences with a few meds, one leading to a 3-month manic episode and another inducing a suicide attempt. I don’t want anyone to have effects like that because of advice I give.

Psychiatric drugs have also saved my life. I couldn’t function daily or even survive long without them. I know they’re essential for my personal wellbeing, so I don’t want my writing to lead someone to refuse to try them out of fear. I don’t want you to give up before you’ve begun. Medicine has the potential to improve your life in crucial, critical ways if you truly need it. The key is finding the ones that are right for your specific brain and body’s chemical balance.

The advice I will give is that it is so, so, so important to keep track of all the effects of your meds, good and bad. Please, please, please take notes and report them to your doctor. Some people’s appointments with their psychiatrists are as short as 10 minutes and can be as far apart as three months, so you can’t go in there and talk in a rambling way (if you can help it; sometimes you can’t) like you’re in therapy. That’s not how psychiatrists work anymore (although they did in the past). They are there to prescribe, and you need to be able to communicate all the relevant information about your symptoms since the last appointment. To do that, you MUST write things down.  Do not waste your limited time. And you do have the right to ask the doctor to see you more frequently. My experience is that they probably will agree if they can. Your request is a signal to them that you’re not doing as well as they may have thought. Some doctors, especially those in government facilities, have workloads so overwhelming that they’re simply not able, but it’s very worth a try. Advocate for yourself if you need more frequent appointments.

My entire library of psychiatric guidance (the kind I’m comfortable giving) is in the article here, my Ultimate Guide To Psychiatric Medication. I recommend reading it if you have any chronic medical condition that requires taking medication and seeing doctors regularly; it will arm you with the information you need to be a more effective patient and get more productive treatment. Doctors are tired humans, and the truth is that sometimes they’re just trying to get through the day. If the things you tell them don’t help them do their job, the job isn’t going to get done. They are only as good as the information you give them. They also sometimes don’t try very hard. They’re normal humans who have bad days. And something most people don’t seem to know is that your doctor is not your advocate as the patient. You are your best and only advocate as the patient, and it’s up to you to be an effective one. Please read the article I linked above if you’d like to learn how.

This was not a fun, spicy article about the down-and-dirty parts of my illness. This is just a sample of the work that comes from day to day. Most parts of being mentally ill are not dramatic. Most of my experiences with mental illness are boring; details about medications, missing a dose, forgetting a refill (did that one today), waiting on hold with the pharmacy (that one, too), doctor’s office, or insurance company, putting together pill cases for the week, and just trying to get up the energy to take a damn shower. I spend inordinate time literally staring at nothing. It’s as vital to me as eating: it needs to happen regularly in order to fuel my survival. Most of what keeps me alive is plain, boring work.

I know that this probably won’t be a super engaging article for most people, but I still felt it was important to post for those of my readers who are chronically ill or disabled, because to them, this will really mean something.

To the rest of my readers, I promise to be more interesting next time.

bunch of white oval medication tablets and white medication capsules
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If you appreciated this piece of writing, please consider signing up here for Patreon benefits. It costs $3 a month, is quick to signup, and it all goes to me. The point of Patreon is to support your favorite artists and get inside looks at my process, life, and all my behind-the-scenes action, including some juicy things I can’t post here. If that doesn’t appeal, please consider donating a few dollars to my “tipjar” at Paypal.me/goldfishpainter. Times are tough right now, and my third attempt at getting my food stamps back has failed. I’ll just have to try again, but in the meantime, my parents are doing their best to pay for my groceries, and they have limited means right now themselves. I don’t want to beg, but if you’ve got two or three dollars you can spare, it would make a big difference to me. Small things add up.

If you would be comfortable supporting the website with $3 a month, please check out my Patreon below. Patreon contains all my additional content and is a more intimate platform where I reveal more personal things about myself and my journey. When you click on the button, you go to a page where you can see the benefits I offer. This, too, means a lot to me.

Thoughts? I will listen.

Why The Fuck Am I Back Here?

Sitting in my wheelchair on the Intensive Care Patient Unit at the DePaul Psychiatric facility, I wept loudly and openly at the sight before me.

“How am I back here?!”

It wasn’t a question.

I lost all sense of whatever decorum and dignity I had left, as I was under the watchful eye of no one, save a video-only closed circuit camera. Besides, I’d only been on the ward for ten minutes. It wasn’t like I’d get out any later if my first day was awful and full of semi-problematic behavior. A fancy way of saying I had nothing to lose. So yes, I wept openly and loudly, slumped and ugly in a wheelchair, because that was what was required for my soul’s digestion of seeing an empty bench, table, and television, next to a window, which was letting in a slant of sun that rested on the tabletop.

I remembered everything about them.

“HOW am I back here!” I wailed, with a building sense of bitterness and resentment at myself and my illness. In such a state, my illness was completely my own fault and personal failing. My brain was filled with lies, and I wasn’t coping well.

That table. The TV it faced. The ray of sun.

Crucifixion and resurrection.

I’d hung myself in this hospital in 2006, at age 19, when I was only 1 month into my illness “presenting”. My neck didn’t break, so I was strangled instead, no air in or out. I was found by a nurse who cut me down just as I was finally slipping away into whiteness. When I landed on the floor with a heartbreaking thump and involuntarily took a breath, I remember not understanding the sounds I made. I sounded like a wolf.

That bench, the one making me cry, was where I sat under 1-to-1 observation for (I’m not even sure how many) days after that first suicide attempt. The staff members who watched me changed every four hours, and we didn’t speak much. I had nothing to say.

I was dead, sitting upright on a bench in front of a table and a television.

That bench was also where I was redeemed; where I realized that I was capable of recovery. After however many days of being on an antipsychotic and two mood stabilizers (prior to that I’d been unmedicated), I started feeling things again and reconnecting to my environment. I was aware of where I was and could process my five senses again.

One morning, at breakfast, a patch of sunlight on my left forearm started to feel warm. I remember it with perfect clarity: I hadn’t felt warmth for six months. Warmth was not something that registered in my brain until that moment.

I realized I was coming back. My suicidality and psychosis weren’t permanent. There was life after diagnosis. Episodes aren’t forever. I kept my forearm exactly where it was to take in as much heat as I could, and began to cry. Fat tears ran down my cheeks and my whole body shook silently. It was relief. It was rebirth. It was forgiveness. It was redemption. My life was safe.

I told the nurse who brought my medication that morning that I thought I was going to get better.

She said, “Of course you are, baby. I could see it in your eyes.”

Flash forward two years to 2008, and I was in DePaul again after a massive failed overdose. I’d had a bad reaction to lithium when the doctor first put me on it, but couldn’t identify (being only 2 years into my illness) what was happening to me. It was a slow, three-month-long descent into suicidality. The worse I got, the more lithium the doctor prescribed. By month three, I was researching and planning. I was on a trip with my family (an activity I now try to avoid) the night I made the decision. I remember looking up the lethal dose of lithium and doing the math on how much I had. Not enough right now. I’ll have to wait until I refill the script. Only 12 days. Then I’m out forever.

It wasn’t a panicked decision. My suffering was a slow burn. My planning process was meticulous.

The night before I got my refill, I stopped believing that love existed. No one loved me and I loved no one. Love had been my very last reason for considering staying. Knowing that there was no love felt like the universe was giving me permission, telling me yes, of course this is exactly what you should do. You can see the truth that the others can’t.

They’ll all get over it in a year or so anyway.

I failed in an important detail. I won’t say what, because I don’t want to help teach anyone to effectively overdose. I took twice the fatal dose and fell asleep. A few hours later, I vomited up my dose. I took a second more-than-lethal-sized dose and fell back into dark sleep. Woke up vomiting. I took the last of what was in the bottle, only half a lethal dose, and added a bottle of Tylenol. Hopefully, I figured, the cumulative effect of what I’ve already digested would allow me my escape. Back to sleep again. Woke up. Threw up. I went back to sleep.

Eight hours later, I woke up. I was furious. I had failed. I was an atheist at the time, but in my drugged up haze I was firmly psychotic. I had digested massive amounts of lithium before vomiting each time. I was heavily “medicated”.

And all I could think was “God said no.”

God said no. God said no. God said no.

Fuck you, God.

I went into the living room, where I told my mom, calmly, that God had said no. I thought she would understand, somehow. And she wouldn’t worry. I was alive, plus love didn’t exist. She was very confused and concerned at my behavior, and when I admitted to my failure, she took me directly to the emergency room.

The doctor who first saw me asked me how much lithium I’d taken. I told him (the lethal dose times 4.5) and he said “You shouldn’t do that, you could have died.”

How fucking ignorant can you be.

In the ER, they said it was too late to pump my stomach, so they gave me something intravenous and had me drink several big styrofoam cups of thick charcoal powder mixed with water. It was (I probably don’t have to tell you) very disturbing: like drinking dirt mixed with kitty litter. I gagged my way through them. It seemed every time I finished one, another was swiftly presented to me. I felt like they were punishing me for wasting their time. They did all seem pretty pissed. Maybe they were.

I gave zero fucks. God said no.

They kept me overnight in a room upstairs, and in the morning two police officers came into my room and said they were going to “escort” me next door to the psych hospital, DePaul. They wanted to put handcuffs on me. My father begged them not to, and he (and our collective white privilege, I now recognize) won out with the cops. I put my shoes on with the laces removed, but had to leave still in my hospital gown, and the five of us walked down an endlessly long hallway, my father firmly holding my shaking hand. My mother followed behind us carrying my belongings.

My parents had to say goodbye to me at the cop car. We hugged.

I didn’t feel anything. There was no love. It meant zilch.

Empty.

I was waiting, in my mind, to try again. This time, I’d climb the fire escape of the Alico building and dive headfirst. I couldn’t possibly fuck that up. I just had to wait and pretend to be okay until they let me out again. I was waiting to finally get to Forever. I could wait another week. Forever would be forever. I’d just hurt like hell in the meantime.

I was put on the intensive care unit when I arrived, but I answered all their questions “correctly” and completely dishonestly, acting pleasant and normal. In a few hours, I was deemed to not be a danger to myself or others and was transferred to the regular “adult unit”. I was still in my hospital gown. It didn’t matter. I was nothing. I didn’t speak to anyone. They were all nothing, too.

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And now, here I am in 2020, slumped in the wheelchair while my dizzy-making drugs wear off, and sobbing at seeing a bench and table after 16 years. How am I back here? How have I failed so badly that I’m back here? I’m supposed to be a role model. A helper. A small but positive force in the universe. Someone who helps people. Someone with lived experience who has vitally important things to share with others. Someone whose full life for 16 years has been learning, coping, living, falling, struggling, suffering, persisting, and ultimately, saving myself from myself without ceasing. I don’t want others to go through everything I have, so I give as much of what I’ve learned to my readers in the hope that they can skip over some of the really bad parts. I tell my stories so they know they’re not alone.

And still, I’m back here.

True, I wasn’t there for suicide. But still, I felt I’d failed at something. And I knew that to treat a manic episode, they would keep me more than 3 days (they kept me a week). I felt I’d failed at my only profession in life; staying healthy. I’d failed as a role model. I was not “the woman who got better” whom I so desperately long to be. I was still sick, after all these years, and was now realizing that this could happen again and again throughout my life. My illness might come roaring out from time to time to sabotage me, and this might not be the last time I see this bench and table and weep.

Those stories, containing everything I felt in my past stays there, were clear as the summer sun during my most recent stay in DePaul. I had to sit with the vibrant memories of those stories for my week-long hospitalization for a manic episode. Haunted by my past, I was once again haunting these hallways. That is the root of the trauma I now have to recover from. It wasn’t just the injustice of the staff not offering us care. It wasn’t just the danger of Time Lady. It wasn’t David singing “Medicaid comes to mediquaid” over and over as he paced. It wasn’t just the near-violent episode that my new, 20-year-old friend James had that pierced my heart and sent me into my own crying fit, knowing how deeply and long he would suffer. It wasn’t just my own mania and episodes. It wasn’t just the pure hopelessness that inhabited this ward.

It was all those things. But all those things reeked of memories from the darkest days in my life. Those memories rested in my hospital bed, inhabited the trays of food I ate and were echoed by all the archetypes of people with severe mental illness that seem to always populate this ward. Even the smell of the blankets opened old wounds I’d worked for years to close.

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Although it may seem trivial, my week in DePaul was traumatic, and it’s going to take time to close those wounds again. When I get back from a vacation that lasts longer than two days, it takes me two full weeks to regain my mental balance. This was not a vacation, and it was not two days long. I need space. I need time to stare at the wall. There is a difference between isolating to cope with depression and isolating to conserve psychological energy. I’m doing the latter. And it is making me happier. I am improving. I’m getting past my anger and fear, bit by bit, and although I know it will come back on occasion, I’m doing the bulk of the work right now. The boundaries I’ve put up have become a little more permeable, and I do see people sometimes. I’m using my coping skills daily, but I don’t need to use them every second of the day like I did when I first got home.

My therapist says this is the kind of trauma that can be treated by experiencing awe as often as you can. Today it rained and then poured (but no old men snored), with winds violently rocking the trees outside my window in a way that made me stop and stare. And it always works. We’ve known for forever that awe is a good feeling. It has just now been proven scientifically to help the brain overcome trauma (mental health is physical health: your brain controls your body, your body can heal your brain).

Sometimes I use water to find awe: imagining where it has been in its life, going back and back and back through time, and how it got to my faucet and will run down my drain to continue its cycle of life. Sometimes I use Youtube videos about consciousness, the universe, multi-verse, or infinity. I highly recommend the Kurzgesagt channel’s videos for mind-blowing topics like these. Sometimes I hold the worked-flint tool I found, made by a Native American far in the past. I turn it over and over in my hand, imagining its creation and many uses. I ponder the person who put so much work into creating it. Where they lived. Who they loved. What they liked to eat. What made them happy. What made them cry.

Using awe, deep breathing, mindfulness, proper eating (low blood sugar causes episodes, among other mental/physical issues), consciously conserving my spoons (read spoon theory here), limiting stimulation, and getting good sleep, and using my support system, I’m starting to feel better. For my spots of grief and anger I cry or yell and then reach out to someone in my support system. Family and friends have been an invaluable resource. My doctor and I are in close contact (if you ever have the option to use MyChart, it can revolutionize your care. You can message your doctor directly and get a response from them within two days. You can also see them over Zoom through MyChart. Do not pass up this opportunity if it is handed to you). My therapist and I are continuing our work together weekly, and I’m being unabashedly candid on social media and Patreon about my struggles, because people keep reaching out to say it helps them. I’m maintaining the personal boundaries on my time that I need to keep in order to keep all my progress going. I can’t give out spoons willy-nilly right now. They’re a much more limited resource than I’m used to, and I can’t do everything in a day that I normally would. Today, for example, I have told my friends that they won’t hear from me much, and they respect that. I’m so grateful that they do.

woman comforting friend
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I’m coming to terms with the idea that I may need to go there again, be escorted to the hospital against my will, see that bench and table and weep, and there should be no shame in that. I’ve still learned what I’ve learned. I’ve still helped people. I’m still fighting, and my illness still has not taken me out.

Carl Sagan once said something completely unrelated to my situation, but the phrase has been ringing in my mind this week as if he said it to me, personally. In my mind, it’s about me, my illness, and my future. He said:

“A still more glorious dawn awaits:

Not a sunrise, but a galaxy rise.

A morning filled with 400 billion suns;

The rising of the Milky Way”

sky space dark galaxy
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Nothing can stop the sunrise. Nothing can halt those 400 billion suns from hurtling through space, dragging their unimaginable number of planets behind them at the pace of the expansion of the universe. Nothing can reverse the arrow of time.

Time moves us forward from moment to moment, never backward. No matter how many times I see that bench, it is never actually being “back here”. It is simply “here again”. Again is forward. I am moving ever forward.

My illness can never actually drag me backward. It doesn’t have the power, nor the right. I will continue to learn and grow no matter what I do. I will keep learning as surely as the sun will rise, and one of many things I’ve learned from this hospitalization is that seeing that table and bench is not a mark of failure. It is only a passing of time. It is a tic mark in my growth and the expansion of my Self and story. It is the present, and may be the future. But a truth I hold onto in every episode is that no matter how far away I go, I always come back. And I believe that as surely as I believe in the coming dawn.

flight landscape nature sky
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If you appreciated this piece of writing, please consider signing up for Patreon benefits. It costs $3 a month, is quick to signup, and it all goes to me. The point of Patreon is to support your favorite artists and get inside looks at my process, life, and all my behind-the-scenes action, including some juicy things I can’t post here. If that doesn’t appeal, please consider donating a few dollars to my “tipjar” at Paypal.me/goldfishpainter. Times are tough right now, and my third attempt at getting my food stamps back has failed. I’ll just have to try again, but in the meantime, my parents are doing their best to pay for my groceries, and they have limited means right now themselves. I don’t want to beg, but if you’ve got two or three dollars you can spare, it would make a big difference to me. Small things add up.

If you would be comfortable supporting the website with $3 a month, please check out my Patreon below. Patreon contains all my additional content and is a more intimate platform where I reveal more personal things about myself and my journey. When you click on the button, you go to a page where you can see the benefits I offer. This, too, means a lot to me.

Thoughts? I will listen.

No Care For The Doomed: Intensive Care Ward

I’d only been on the Intensive Care Patients’ ward for five minutes before I accidentally made an enemy of a hostile schizophrenic woman who presented the possibility of danger.

I wasn’t wrong.

The primary purpose of the Intensive Care Patients’ ward is to prevent harm to self or others. If you’re dangerous, ICP is your destination. Everyone you meet there is having serious problems. No generic depression/anxiety/suicidal thoughts. That’s for the Adult Ward, where people are nurtured and have therapy groups, exercise time, art therapy, walks outside, and even access to vending machines. ICP is for danger. Psychosis: hallucinations, delusions, and paranoia. Intellectual disabilities with violent tendencies. Nasty drug detox. Violence. Manic episodes. Unmanageable or problematic symptoms that were scary enough for someone who loves you to give up trying to help you themselves.

At first, I thought the woman was cogent and I listened patiently and attentively to her clumsily try to explain how the ward worked She loosely did so in between fits of telling me about how her mother was murdered and she wasn’t allowed to testify at the trial, but that if she did testify, she would be in witness protection but maybe the judge had an agenda already and if anyone knew she was here, she’d be hunted down by her mother’s killer…

I listened. I was lost and helpless in a foreign land, and I didn’t have a clue how this place functioned. I was desperate to know how to get the things I needed, like my glasses and a cup of water. No one had explained the rules to me and none of the staff looked my way when I waited politely at the staff window. It would take me a few hours to realize that we were all considered so far gone that no one should bother caring for us outside of providing strong medication and preventing us from harming ourselves. And even in that regard, they failed. I stopped a fellow patient/friend from banging his head against our single Plexiglass window much more often than the staff.

This rambling woman was friendly and called me “sweetie”, right up until after she asked me to read the clock and tell her what time it was. Boy, did I fail that test! I couldn’t make it out clearly without my glasses, and whether I was correct or not, I’ll never know. Either way, my answer made her furious and distrustful, because it told her I was one of “them” who were pulling the wool over everyone’s eyes by setting all the clocks wrong for some evil reason. She told me never to talk to her or even look at her ever again.

And lucky me; her bedroom was next door to mine.

I could hear her talking outside my bedroom every time I awkwardly wheeled my oversized, semi-broken wheelchair from the Providence ER into my ICP room and closed the door. She would talk to whoever passed by (and possibly sometimes no one) about how I was “one of the evil ones” and that I was not to be trusted. That I was only pretending to be sweet, that it was all an act. That I didn’t need the wheelchair or my glasses. I was pretending. I was one of “them.” I was “in on the plan” and I was dangerous. I could hear every word through the door, and my hands continually shook from a conflict that I wasn’t even participating in.

I could only handle it for about fifteen minutes. I somehow caught the eye of my shift nurse, which was lucky. In ICP, we were assigned a different nurse at each shift, and I rarely knew who mine was. If you asked someone for something, they often tell you to ask your nurse. Depending what you ask for, sometimes the nurse would say to ask the doctor. The doctor once said ask your caseworker. Your caseworker says ask the technician. The tech says ask your nurse. But by then you have a different nurse whose name you don’t know. The buck was constantly passed. I had two bad scrapes on my thigh from a fall into lawn equipment, about half a centimeter thick and three inches long, that, no matter how many people I asked, never did get disinfected or bandaged. I tried my best. I treated it myself when I got home. By then, it was red, swollen, and tender.

I told my nurse about having made an accidental enemy and not being able to handle conflict, showing him that my hands were already shaking. He said he’d move me to a bedroom down the hall and across the ward so that I didn’t have to ever see her again. I wasn’t trying to, but that was how I Karened my way into getting a better room with no roommate. I’d spoken to the manager. I was able to see the humor in that moment.

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On our Lost Cause Ward, the nurses stayed busy on computers and tried their best not to make eye contact so that we wouldn’t ask for anything. We would ask anyway, just kind of rudely shouting our needs through the staff-room window to request a 90s-era cordless phone or another cup of decaf coffee. I’m afraid that the staff actually believed they were doing a good job, forever on their computers and phones or shooting the shit with each other. I assume their work was crucial sometimes, but I’m glad I never found out what it was that they spent all day doing; I don’t want to know what I was less important than.

We were allowed one luxury: one cup of decaf coffee per hour, which they faithfully provided. It was the main act of care they provided, and the main marking of the passage of time. Time was cups of coffee in between meals. That’s how I knew what time it was. Eating and drinking. Essential functions. They at least made sure we did that. Sleeping is essential, too, but all of us were so heavily medicated that sleep happened several times of day and posed no concern. No one stayed awake, not even my manic self.

In between cups of coffee and diabetic-menu meals, I took my naps. They turned my meds schedule upside down, so I was taking an extremely sedative antipsychotic called Zyprexa (my favorite ever, but read this article before thinking about asking your doctor for it) at 7 in the morning, with breakfast. I’d get woken up between 5AM and 6AM to have my vitals and blood sugar taken. In normal life, if I have to get up that early, I’m going to have bad symptoms that day. That happened every day. So I’d get up at 5 and stay up to eat breakfast at 7 and then go back to sleep until lunch. No therapy. No activities. Sleep, eat, sleep, eat, talk to my new friends, eat, talk to friends more, make obligatory phone calls with the ancient cordless phones to comfort my parents and outside friends, read, sleep. No cell phones were allowed for patients in the hospital on either ward. They tell you to write down phone numbers on your hand or memorize them before you’re admitted. You’re not allowed to bring anything onto the ward with you when you’re admitted. Family can send you items like clothes and books once you’re in.

My first night there, after I’d been moved across the ward, everyone could hear the Time Lady (I had to make up a name to call her because she refused to tell me what hers was) on the other side of the ward, screaming and yelling obscenities, making loud banging noises, clearly having a violent psychotic episode. It was upsettingly loud and sounded out of control. There were four of us sitting at a table in our common area at that moment, and every one of us was silent, holding stock still like spooked deer. The long, antiseptic hallway between the two sides of Intensive Care echoed and amplified her screaming. We heard yelling, some banging sounds, and the kinds of words that typically accompany hateful violence. A nurse came out to tell us that we were safe, that Security was on the way and not to worry. The four of us in the common area all sat silent with our heads bowed.  We listened in unison until all the noise was gone, and when it was quiet again, none of us moved from our frozen poses. No one spoke. We were afraid of that woman. And security. That was a pall that hung over us: a fear that we may be next if we got too upset. That sounds extreme, but we were all in extreme places, mentally and physically.

The staff in ICP were all polite and kind, but I think the patients there were all just considered too broken to be helped. None of us were human enough to register as people in their neurotypical, jaded eyes, and you could hear it in their voices. We were addressed like developmentally disabled children, and most of the things we said were dismissed out of hand. They didn’t see us as adults with the potential to get better. It has made me cry many times, thinking about all the “lost causes” that pass through that ward, full of decaf coffee, empty of hope, desperate to get better and aching for relief that, ultimately, probably wouldn’t come without the right drug or possibly a gunshot to the head. In my time there, I was the only person who got better enough to be transferred to the Adult Ward. Everyone else was left to deteriorate in an environment that provided no opportunities for healing.

It’s likely I’ll never meet those people again. I’ll never find out how they did after they got out.

I was friends with all my fellow patients (about 6 people) during the four days in ICP and then friends with ten more people in my three days in the Adult Ward. In the Adult Ward, we were given wonderful care, mostly by the same exact staff that dismissed our words in Intensive Care. People on the Adult Ward are the ones who get better. But the Adult Ward is another article.

James was the smartest. He was only 20, and that broke my damn heart. I was hospitalized for the first time when I was 19, and I know how much pain and bullshit he’s going to have to live through in order to get to a place that’s past being stuck in constant pain. Watching his face when I met him, his eyes staring down at his dinner tray, I have never seen a human being in that much pain. I remember my best friend’s mother’s face the day of her daughter’s death, and James’s pain surpassed it. I told him I’d never seen someone in so much pain before. He said “No… normal pain.” Someday he’ll recognize how much stronger he is than most people, but measuring against my own experience, it may take him 16 years (yes, I’m now 16 bipolar-years-old). Until then, he’ll wonder why he’s so much weaker than everyone else. I saw James in an episode one night and it triggered me, thinking about my whole journey with the pain of mental illness and how he had that whole journey of pain ahead of him. He was pacing and crying and ranting, and had four staff members surrounding him, making sure he was safe and ready to restrain him if necessary. I came and sat next to them so I could hear what he was saying. I don’t remember any of it, but I was crying and it hurt my heart so much that I got up and tried to hug him. Two staff members gently grabbed me and moved me into a different room. One nurse stayed with me while I cried. I’ll call her Lynn. Real names for patients, fake names for staff. She talked to me and said a bunch of uneducated and largely unhelpful things to calm me down while I was crying, and she listened to me when I spoke and tried her best to respond with her very little knowledge of mental illness. I was really grateful. Her words weren’t helpful at all, but the compassion behind them did help me. And of course it did. Sometimes all I need is for someone to offer help. I don’t actually need specific help. I just need the gesture that someone wants to help. Lynn was the one staff member on ICP who did offer me emotional support. She had a big heart and wasn’t blinded by disillusionment. She also later sought me out on the Adult Ward to check in. She said she was proud of me. It was infantilizing, but I still appreciated it.

Later, James and I were awkward with one another, but we reconnected at breakfast the next morning.

Edmond was young, too. Only 23. He wore a doo-rag on his hair and a sheet on his back and around his shoulders, with a knot tied across his chest. It looked like a superhero’s cape. That was endearing to me from the moment I met him. Unfortunately, I think he was just cold from some kind of metabolic disorder that was not being addressed. He was very, very thin and had a history of meth abuse and diabetes. At meals, he would eat what was on his tray and then ask people if they were going to finish things, and sneak extra food while the staff wasn’t looking. Sneaking or trading food was not allowed. He had very high blood sugar and got insulin shots sometimes, but he was never full. He would finish his dinner and then parts of other people’s meals, until we all caught wise and realized letting him have extra food was causing him to need insulin. He’d take his last bite of dinner and say “Three hours til snack.” We’d finish snack and he’d say “Eleven hours til breakfast”. He complained of being hungry constantly, and would get angry and bang his head against the window when he got frustrated about being hungry and not having access to food. I don’t really know any specifics on why he was there. He had a little bit of intellectual disability and of course, the expression of self-harm, but he said he’d never gotten a mental illness diagnosis.

Frank was older then I by about 10 years. He normally lived in a nursing home, and was severely intellectually disabled. His speech was slow and close to monotone. He was frequently confused and would ask the same question over and over again until he understood the answer. He was missing several teeth. He wore the same outfit every day, solid red from head to toe. He had admitted himself to voluntarily and was very confused by the process of releasing himself. He wasn’t offered much help with that, probably because the staff thought he should stay. Frank told me that he had admitted himself because he was having strong suicidal and homicidal thoughts. He wanted to kill people in his nursing home. But I was never afraid of him; he was just a very confused person in a lot of pain who had reached out for help, probably for the umpteenth time in his life, and was receiving none.

By now, I’m sure you can see the pattern of despair and love and pain and helplessness that I felt while I was in ICP.

Tiffany was in her 50s and had kids and grandkids, but she looked my age or younger (I’m 33 and she didn’t have any grey hair). She presented very much like a transgender man to me, and maybe she would have identified that way if that had become an open part of our culture when she was still a kid. She was easy to talk to and pretty educated. I don’t know why she was there. Her behavior seemed absolutely normal and stable. She consistently hit on a shy guy named Johnny, who in turn consistently hit on me. He was always telling me to smile. He seemed kind and sad and not too bright, so I didn’t chastise him for it. He didn’t deserve to be chastised. He was very nice. And I’ve never met his demons.

Carlos stayed mostly in his room, and he was the first of us to get out. We all got misty eyed saying goodbye to him, and seeing him walk through that door into freedom made a powerful feeling in my chest, like a column of calm stone. I didn’t even really know him. But his success was symbolic of the potential each of us had.

Last was David. He could do simple tasks when prompted, like sitting down to eat a meal (albeit with his hands) or taking his meds. He talked and sang to himself in a soothing, rhythmic way as he walked around the ward all day. Sometimes you could make out the words he was singing. He had a nice voice.  I remember “Medicaid comes to mediquaid” and “seven nine four four nine seven” His toenails were painfully overgrown, and he wore hospital gowns with cotton shorts on underneath, holding up the waistband with one hand while he paced. He was never a threat or a nuisance. He was David, doing the things that David does, and he wasn’t unhappy. He was just extremely different from average, and his world was separate from mine. I’m sure he lived In Care somewhere. At least I hope he did. And who knows, maybe they’ll find good meds for him. But there are worse ways to spend a life than walking and singing all day.

He, like all of us, is a valid and inherently worthy human being. I hate that ICP did so little for the most vulnerable patients in that hospital, and it seems especially unfair that the less-sick people get more complete treatment, when we didn’t get any at all. We got tables bolted to the floor and plastic chairs with rounded edges that were too heavy to throw or kick over. We got fluorescent lighting and white walls. Decaf coffee. 4 minutes with the doctor each morning. Meals. Meds.

But don’t worry, folks. The trajectory of this story is about to improve. In my next article, I’ll talk about the redemption I got in the Adult unit, where I was treated like – guess what – an adult. Kind of.

My stay in the hospital was very recent and intense and I want to clearly communicate all of it. I really want everyone to have the insight my experience may provide, and I’m currently seeking to be understood by my friends and family. But I’m not quite well yet, and writing about all this is exhausting. So I’m going to break up my 7 days in DePaul into a few different articles so that I don’t wear myself down by reliving it all at once. I hope you’ll stay tuned.

 

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One Reply to “No Care For The Doomed: Intensive Care Ward”

  1. Linda Crannell says: Reply

    Emily, I hope you realize what a gift you give when you teach us empathy. “And I’ve never met his demons.” Wow! I hope I can copy that on my heart and never forget it.

Thoughts? I will listen.