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.
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”
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.