Briefing on a Descent into Hell
Author’s Note: I wrote this piece three years ago during a dark period in my life. Propublica picked it up when I published it on my Wordpress blog, using my experience as evidence of neglect. I am reposting it here since I am shutting down my Wordpress blog and want to keep my experience published.
ACLU of Illinois Demands Removal of Children in DCFS Care From Troubled Chicago Hospital
More allegations of sexual abuse at Aurora Chicago Lakeshore Hospital, already under government scrutiny, have surfaced.
America is great if you're rich. Just look at Kanye West. Or the countless other celebrities that come out having a mental illness and become icons of bravery. You can have a mental illness and go to lush, private facilities dedicated to wellbeing and health.
Those of us with poor health insurance, who have to rely on underpaid, undertrained, uncaring health professionals are having the exact same treatment as our 19th-century peers.
Mental Health treatment in the West has improved somewhat from the 19th and early 20th centuries. Gone are Lobotomiesand Water Sheeting.
Yet, the mentally ill are continual scapegoats for larger societal problems. Every time there is a mass shooting, mental illness is to blame.
This is my experience trapped in a Chicago mental hospital for five days:
07/21/2018
I just got out of the mental hospital where I never should have been. I wasn’t suicidal, wasn’t going to harm myself or anyone. On Monday I was feeling extremely depressed. A depression that was getting worse and worse. I started having suicidal thoughts. Not suicidal ideation, I wasn’t forming a plan, and I had no intention of harming myself. But I didn’t want to get to that point.
A good friend told me to go to the ER to be observed. Also, I’ve been trying to get into an Intensive Outpatient Program for months and nobody had been helping me. Besides, I had lost my medical insurance in July. Luckily, I had managed to get insurance through the Marketplace for a $476 premium (Yay American health care!) My only transportation to the ER was by bus and I couldn’t handle that at the moment.
So I called 911.
I explained I was very depressed, but knew myself and my illness, and that I didn’t want to get to the point of harming myself. Not once did I say I was going to harm myself. Just that I wanted to be observed. Five minutes later, a fire truck and the police show up at my apartment. It was really embarrassing. They made me sit on the back of the fire truck, took my vitals, and treated me like an unstable person. The police never removed their hands from the top of their guns. Soon, an ambulance shows up. More vitals, more questions, more denials that I wanted to harm myself.
They loaded me into the ambulance, and they took off, siren blazing, to an unknown hospital. After a 20 minute, anxiety-inducing ride, I'm shuffled into the ER where I repeat myself for the fifth time. They take blood; I pee in a cup, because it's assumed I'm a substance abuser. After an hour wait, a nurse comes in and asks me the same questions as everyone else. I tell her I have insurance, but the cards haven't been sent yet. My insurance is active and I give her the phone number to the company to verify that it is. I tell her I'm diabetic and need my insulin. I tell her all of my medications. I stress again I'm not having suicidal ideation or have a plan. I'm just very depressed and want to be watched. And, oh, can you find me an IOP? Thanks!
Soon a doctor comes in. Says she hears I'm suicidal. I once again say I am not, I just don't want to get to a point where I will be. Oh, can I have my insulin now? I'm diabetic. She scribbles things down and I'm left to my own. For two hours. Then five hours. No insulin, no medication. While waiting, they put another patient in my room and I get to hear all of his personal information. He is suicidal. His mother is with him. He is about 20 and is white. Looks upper-middle class. The mother hands over her private insurance card. The nurse tries to comfort the boy and goes off to verify his coverage. His mother hugs him, tells him he'll be ok. To not be scared. I just wait. Alone.
Dinner is brought to me, eventually. It is all carbohydrates. I still haven't received my insulin. And it's going on 8 hours now. I know nothing. I'm getting fed up. I venture into the hall. A security guard moves his hand to his gun (since when did hospital security guards carry guns? And why was there a security guard watching me anyway?) I ask a random nurse what's going on with me. He said he'll get my nurse to come see me. I exchange looks with the security guard, thinking of running. Instead, I shuffle back to my room.
A new nurse comes in 30 minutes later to explain that because I don't have insurance, they're trying to find me a bed in a state mental hospital. By now I'm irritated and exhausted. First, why am I going to a mental hospital? Second, I have insurance. I have told multiple people this. I have volunteered to show them my accepted case on the marketplace. I tell her this and she says she'll look into validating my insurance again. While this was happening, I forgot to notice that they have discharged my suicidal roommate, sent to a private mental hospital for observation. I wonder how long he's been gone. It is now 2:00 am. I still haven't had my psych medications or my insulin. I protest, but nothing happens.
Around 6:00 in the morning, I am informed that they have validated my insurance information and the doctors are now trying to find me a bed in a mental hospital for observation. I ask again why I'm being admitted. I'm told because I came in suicidal. I repeat yet again that I am not suicidal.
I don't think anyone hears me.
It takes another six hours for the doctors to find me a bed in a mental hospital. I am told the medical staff is fast-tracking my intake.
Around 3:00 pm, I'm told a bed has been located in a hospital 12 miles away. I just need to be transported there now. I am loaded into another ambulance, strapped into a gurney, and we plummet into the streets of the city. It begins to pour rain and flash flood warnings are sent out.
50 minutes later, via many diversions down alleys due to flooded streets, I am finally wheeled into the mental hospital. I'm starting to think that now, finally, I can get some rest and get my meds. I'm starting to go through withdrawal. It has been 36 hours since I had taken them, including my benzo. I am roughly directed into a triage room to wait. And wait. And wait.
I try to sleep, but it is so hot in my room, I am coated in sweat. Loud howls start to come from the room next to me along with horrendous banging against the walls. The person in the room next to me has entered into a psychosis and is tearing apart the recliners they provided us. Metal is clanging against the floor and the man, shrieking, started banging his head against the small glass window in the door. He breaks it. He keeps howling “kill me, kill me, kill me.” The staff was so ineffective at calming him down that the police had to be called in and restrain him.
This was one of the scariest moments of my life.
I still hadn't had my medication and my anxiety had become overwhelming. I curled in a ball and hoped sleep would come. Eventually, someone comes to see me. I don't know the time or how long I'd been in this room. All of my belongings were placed put in a bag and locked up. The man who had come to my room had me sign a bunch of forms. I didn't even bother to read them. I was finally transported to the fourth floor to my bed.
Except not. I'm on the wrong floor. But I still had to sit and wait for another 45 minutes by the nurse’s station while my file was put together. There were no computers, no technology. Only binders and paper and pencils. I asked if I could have my medication and my insulin. I was told I would have to wait until morning when I could see the doctor. But I was allowed to have a Benadryl.
Except, I'd have to go to floor three to get it. No one leads me there and I just sit in the partial darkness. It had now been 48 hours since I had my medications and even longer since I had had my insulin. Eventually, I was thrown some scrubs—they were too small—and shown to my room. On the third floor. Another elevator trip.
My bed was a plastic mattress crammed into a wooden frame. My pillow was some rubber monstrosity tucked into a scratchy pillowcase. My room was blistering hot and, since we were near the lake, extremely humid.
I didn't sleep well that night.
7:00 am rolls around and I'm called out of bed to have my vitals taken. Blood pressure. No insulin still. But at least they checked my blood sugars.
A breakfast of dry eggs, mushy square potatoes, and sausage. I return to my room and try to sleep.
Around 10:00 am, I'm called to see the medical doctor. He asks me about my physical conditions and is appalled that I haven't had my insulin in almost 56 hours. Apparently, the ER never mentioned it in my paperwork that I am diabetic.
He immediately prescribed me my non-psych meds and I finally get my insulin.
At 10:30, I get to see the psychiatrist. She listens to me and agrees I never should have been admitted as an inpatient. But because of the forms I signed, I'm stuck here for five days. My heart sinks.
I should have read those forms. The third form, full of legalize and confusing language, explains that my right to own a gun has been taken away upon my admission to the hospital.
I can understand the language because I've been trained to read and analyze this type of writing. My heart sinks for my fellow patients who see the complicated sentences and obscure words and just sign the form at the nagging request of the staff.
I hate guns. I will never in my life own a gun. But I am deeply disturbed that this hospital, meant to heal people, is stripping away essential rights of American citizens simply because they are seeking help. It just shows how the mentally ill are feared in this country. I think this is a violation of my civil rights, but I don't have the energy to further explore it. I'm exhausted, in withdrawal, and just want to sleep. So I sign without reading or raising an issue.
So I am prescribed my psych meds after over 56 hours. But not all of them. Because this hospital is so disorganized, they missed several of my medications and have to pull my profile from my pharmacy. And without any computers, this has to be done manually. By phone.
A woman who looks to be in a daze comes to the nurse’s counter. She asks to have some water. Nobody hears her. The orderlies are busy laughing at a YouTube video on a phone that had been smuggled in.
The woman waits a couple minutes, then shuffles off.
The first day passes in a blur. Between bouts of sleep, all I do is eat and use the bathroom. I don't leave my bed the whole first day.
The next day, the doctors have finally worked out all my meds. I get everything prescribed to me. Except I have to correct the nurses on the dosages. Once, I get someone else's medications.
I tell the orderlies this and am greeted with a disgusted look.
The next three days are rife with mistakes. There is only one glucometer for a hospital of five floors. The staff can't read doctor's orders or simply ignore them. Group therapy consists of patients complaining about the conditions only to be told that if they behave, they'll be released quicker.
One woman had been in this hospital for eight months. There are whispered rumors about her. She is very nice, if not lost in a fantasy about her dead husband. Nobody takes care of her. She just goes from person to person in the group room telling her story and being kind to other people.
I think we have forgotten her.
This was an experience on a Ken Kesey level. I was finally released on a Friday after checking in on a Tuesday.
As I was walking down the hall with my few belongings shoved into a garbage bag, I pass a puddle of urine. I point it out to the orderly leading me to the elevators to take me downstairs—to the real world—and he just flashes me a smile and says, “not your problem anymore.”
Nobody had come to visit me. I received one phone call from my wife. I was discharged to no one, just let out the door. There was no discussion or referrals for follow up care. I wasn't given any means for transportation home. But luckily I had money on my bus pass and there was a bus stop right out the door. With the help of my iPhone, I'm able to get the correct buses to get me home. Two hours of transfers.
The staff lost some of my belongings and they forgot to return my CPAP. I had to wait to return to my floor to collect it.
I could go on further about how horrible this experience was, but it would just be another listing of the horrors of mental health care that people gasp at then ignore.
Mental health treatment in the country is basically locking up patients like prisoners, medicating them, then shoving them out the door. Mental health is one of the most neglected health issues in this country.
I was seeking help because I knew I was becoming really depressed. I was not suicidal. I wanted to be watched and helped so I didn't become suicidal. I took action against my disease, recognizing the signs, figuring out what I needed, and acted on it instead of isolating.
This is what all therapists tell us to do. And when I actually did it, everything was made worse.
I was treated with no respect and without dignity. I was treated as a burden, worsening my depression.
When health care is run as for-profit, it only treats the affluent well.
My Experiences With Mental Health Treatment in America
The state of mental health care in Western Culture is deplorable. Especially America. Mental hospitals are horror shows with technology from the 70’s used for organizing patients' files and medication logs. Accordion files loaded with paper scribbled with undated notes are placed in a rotating storage system above the nurse's station.
Individual patient's files are routinely lost, and they force patients to track their own medications.
Why do we treat mental health so poorly?
Breast cancer has marathons and fundraisers. ALS had the Ice bucket challenge that went international.
When somebody has Bipolar or Depression or delusions, they are shoved away, out of sight and locked up like prisoners.
Mental illness scares people—I have learned this, losing intimate partners who would not attempt to understand my fluctuations of mood. We don't want to confront it head-on. We discuss mental illness through celebrities and tabloid gossip, never having an authentic look at the struggles the mentally ill go through in a day.
Never understanding why it takes 40 minutes to just put on a sock. Looking at someone with pity because they just don't have the energy, or care, to maintain their hygiene.
We see the glamorous side of mental illness. The celebrity version.
It is no surprise that people who are extremely depressed force themselves to put on a facade of “ok’ness.” It's no wonder those who are suicidal simply avoid asking for help and go through with it. When the healing process demands a loss of dignity and is performed with complete indifference and neglect, when the treatment forces you to be a prisoner exposed to trauma, hopelessness is all that's left.
We are failing as a culture. We are disregarding the things that make us human: sadness, loss of hope, empathy. We use medications and locked doors and padded rooms and bathrooms without a door as treatment instead of kindness, instead of understanding, instead of acceptance. Reaching out and hugging someone, or holding a hand and saying “it will be ok”, we applaud the strength of the famously ill and then distance ourselves from the actual madness.
We must show kindness. We must confront what scared us. We must truly support those of us struggling just to make it through another day without crying.
Without isolating.
Without locking ourselves behind doors.
We must do better.
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