Saturday, October 25, 2014

This Is What Developing Acute Schizophrenia Feels Like (via Vice)

This is an amazing first person account of one young man's descent into psychosis and his slow and hopeful recovery. I have to append a warning to this story however - his outcome is great, but your outcome may vary.

A lot of people do NOT respond well to the atypical antipsychotic medications now in wide use, and a lot of those people suffer with serious weight gain (and diabetes, eventually), lethargy, brain fog, loss of sexual function, and a whole list of other problems. This young man was among the fortunate few who respond to the medications.

This comes from Vice.

This Is What Developing Acute Schizophrenia Feels Like


By Daniel Smith* | Oct 15 2014
*This and other names have been changed.

The brain, showing the cerebral cortex. Photo via Wellcome Images

A year ago this winter, I began to not recognize myself.

Sleep was the first thing to change. Progressively, over the course of about two weeks, I began struggling to drift off. As a 24-year-old man with a good supply of hash, this had never been a problem before. It was so odd. Seemingly out of the blue, I’d get into bed at night and not be able to shut off my brain. Thoughts would grow tendrils and loop onto other thoughts, tangling together like a big wall of ivy. Some nights, I’d pull the covers over my head, grab my face hard in my hands, and whisper, “Shut. The. Fuck. Up.”

Eventually I would be able to get to sleep, but I’d wake up feeling peculiar, like I had forgotten to do or tell someone something. Hunger wasn’t as aggressive as it usually was during this time, either. Normally I bolt downstairs to pour a heaping bowl of Frosted Flakes the second my eyes open. Instead, I woke each morning with a sick, creeping feeling in my gut. Still, I carried on as normal, thinking I’d just lay off the hash for a bit. That was probably it. I wasn’t panicked.

I carried on my work at a local wine shop and tried to push what was happening during the night to the back of my mind. I got through the days OK, if slightly bleary-eyed—but looking back now I can see that I had started to struggle with simple conversations.

If my boss told me to check a delivery, it’d take me a few seconds to process what he was saying, like two or three people had said it at the same time and I couldn’t make out the clear instruction. Looking at morning delivery slips and trying to make sense of them in my head was like trying to make out a tree in the fog—possible, but hard.

Everything felt misty. I started to think that stuff was about to fall all the time—I’d look at a shelf of bottles and see one or two about to topple over, then look again and they’d be fine. I also kept thinking I could hear phones ringing, at all different pitches, even though there were no phones in the warehouse. Again, I wasn’t panicking yet—I just told everyone who asked if I was OK that I wasn’t sleeping well and thought it was all down to that. Sleep deprivation does weird things to people. A friend at work gave me some sleeping pills to try out, and they seemed to help for a bit, even though I’d wake up and feel like my head was full of wool. I stopped caring about going to bars or playing soccer on the weekends. All I wanted to do was sleep. Conversations were too much work.

I’d say it probably took two months from that initial sleeplessness for me to actually think there was something seriously wrong with me. The thought octopuses, as I ended up calling them, got weirder and weirder at night. I’d have the TV on and start being unable to identify what was noise coming from the screen and what was my own noise. It was frightening. One night, while watching Homeland (of all the shows), I had what I thought at the time was a panic attack. I knew what a panic attack was because one of the girls I used to go out with had them—she once had to lie down in the movie theater and do deep breathing to stop herself from retching. It was horrible to watch. That night in bed, though, I started trembling like it was freezing cold—only my skin was boiling. My legs shook against the bed sheets and there was this cacophony in my head, like a crowd of people were chatting beside my pillow. Nothing dramatic, just a steady, confusing noise. By the flickering light of the TV, I began to lose my mind.

I didn’t sleep at all that night. I felt paralyzed. My bedroom door had become the very end of my world, like the paper set Jim Carrey rows into in the final scene of The Truman Show. The noise came and went in waves, but it felt like someone, or something, had replaced my body and mind. It wasn’t me who was too scared to go to the bathroom to piss, so I decided to do it into an empty glass, spilling it all over the floor. It wasn’t me who threw all my bed sheets off, only feeling comfortable completely naked against the bare mattress. It wasn’t me who pressed the tip of a boxcutter into my heel to try and snap myself out of the despair. In that room, as the sun came up and my alarm went off for work, I thought, I need my mom.

Luckily, she was only a staircase away. I hadn’t gotten myself together to move out of home yet—couldn’t afford to, really. I called her from my phone because I thought that if I left my bedroom my insides were going to fall out. I genuinely believed crossing the threshold of my bedroom doorframe into the hallway would make my skull come apart and my bowels fall out of me like a bucket of pig swill. She answered the phone and said, “Oh for goodness sake, Daniel,* stop messing around,” or something similar. I started crying, apparently in big, whooping sobs like a little boy, and heard her throwing her phone on the floor through the ceiling.

When she opened my door, she gasped. I don’t remember doing it, but apparently I’d pulled apart my TV remotes (I had, like, four of them) and my bare mattress was covered in little circuit boards, piss, and blood (from my heel). I sat there in my underwear, crying, and told her that I'd been “taken over.” She called an ambulance.

Again, I don’t really remember this properly, but apparently when the paramedics arrived I thought they were both taking pictures of me. I got really angry and tried to punch them. I screamed at one of them, telling him it was against the law to take my photo and that I had rights, all while seated in a pair of soaking wet boxer shorts with blood all over my leg.

All I remember from the drive to the hospital is my mom holding my legs down against the bed, but she says I was screaming that I didn’t want to be driven on the highway because there were people crouched inside the speed cameras. My memories of the hospital that night are colorless flashes of needles, soft voices, and arm restraints.

An image showing brain areas more active in controls than in schizophrenia patients during a working memory task. Photo via

All the above is what’s called a psychotic episode, and it's emblematic of acute schizophrenia—the illness I was diagnosed with. Psychosis is defined as someone having a loss of contact with reality. It can happen quickly, or—most commonly in those who develop schizophrenia—can be a slow burner and then suddenly snap. That’s what happened to me. I was hospitalized for about a week and a half and started on a course of antipsychotic medication immediately. I don’t remember much of this time, either, only that I felt sick a lot and found it hard to talk to anyone. Oh, and that the guy in the room next to me constantly shat himself on purpose. The smell was like the death I felt in my brain.

I remember the day I started to feel like I’d clicked back into reality, when the new chemicals I was taking found their footing in my body and didn’t just make me want to cover my head in blankets and sleep. My brother came in to see me with my mom (they’d been coming in every day but mostly just talked to the doctors and nurses—I was incapable of conversation), and we watched three episodes of Breaking Bad in a row on the iPad in the visitor’s lounge. My mom held it against her knees with one hand, while occasionally stroking the back of my neck with the other. I laughed at something Saul said and felt like I might be getting somewhere, like the curtains that had been drawn on who I once was were starting to flicker. I even ate a full meal that evening, and I'll now never take mashed potatoes for granted again.

The road to recovery was filled with potholes. Namely, debilitating panic attacks when I had flashes of what had happened weeks previous. But the mental health team at my local NHS hospital were amazing—save a couple of nurses who treated me like a baby. I hated that. Once I was allowed home I had a social worker come and see me every week to check on the medication, ask about what I was doing each day, and encourage me to go for walks with my mom and start talking to my friends again. I'd been too embarrassed to, and thought they wouldn’t understand. Or, worse, just write me off as a nutjob. I couldn’t have been more wrong.

My best friend, Sam, said he’d been so worried about me that he actually hadn’t been sleeping at night. Stupid bastard. One by one they all started texting me again—I think they'd been frightened of saying the wrong thing, mostly—and said they couldn’t wait to start playing soccer again, that I’d be back on my skinny legs in no time. It was amazing how mature they all seemed.

The mental health unit arranged a course of outpatient therapy with a straight-talking man called Gregg. The antipsychotics were really sedating for a while, and I often felt like I was wading through molasses, but there was a strange calm in my brain that I’d not felt for months and months. Gregg helped make sense of what had happened to me, teaching me techniques for when panicked thoughts came into my brain about that night when I snapped (he says it’s unhelpful to talk about “losing” your mind—the mind is still there, it just got ill) and how to not live in fear of it happening again. He encouraged me to start seeing my friends again and told me about how the mind doesn’t stay the same, how it’s possible for it to recover, and that the medication had worked so would continue to work, but that I had to be realistic with myself and accept that I had become ill. All I needed was time.

Accepting it was the biggest thing, actually. Frustration is, as I’ve learned, too close to anxiety. On the days when I’d go out for a walk (my mom made me go every afternoon for at least an hour, leaving me on my own halfway through and giving me a task, like buying a pint of milk or some butter) and start thinking about everything, thoughts would flash into my brain: For fuck’s sake, why can’t you just be normal? I had to stop, inhale a few times and say to myself out loud, "I am normal. I just got sick and am having a break."

Within about six weeks of leaving the hospital, I started going to my friends’ houses again. I always felt a little twinge of discomfort when the TV was too loud, or when everyone talked at once, but I just told them when I felt strange. No one laughed at me. No one pitied me, either, which was amazing. I feel like if one of them had gotten sick like I had, I’d be like an overbearing mother, constantly asking if they were all right.

Within ten weeks I was back at work part-time. My boss couldn’t have been more sympathetic. Apparently, when I went into the hospital he called my mom to let me know that the job was waiting for me as soon as I felt well enough, and that I could take it at my own pace. Initially this made me angry—I didn’t want to go back as some sort of invalid. I was 25 (I celebrated my birthday in a medicated fog watching Friends reruns), not 60, and wanted to be thought of as the same guy when I returned. It took me a while to accept people’s sympathy and care for what it was, not a slight on me as a person.

Going back to work was the best thing for me. Having a routine, people to talk to, and tangible tasks to complete was very medicinal. I had days when I’d wake up and feel frightened, when it would take me a couple of hours to shower and leave the house, but nobody questioned me. I called Gregg a few times from the warehouse—being in the place where my reality had started to slip was, on occasions, pretty odd—and he wasn’t always available, but sometimes just leaving him a message was enough. Eventually, he said I didn’t need to come and see him anymore—that he trusted me to work through the thoughts and techniques on my own.

It’s a year on now, and I’ve not relapsed. I'll have to take this medication for a long time, I think, but I’m OK with that. I have precious little sex drive (even though I can still get it up) and have put on a bit of weight, but those are small prices to pay for clarity of mind.

I wanted to tell this story because, until I became schizophrenic, the word represented a death sentence in my mind. When you hear of people being schizophrenic, you imagine them locked in rooms with padded walls, rocking backwards and forwards into a two-dimensional future of heavily-medicated conversations and drool-covered pillows. You imagine a future of hearing voices and seeing phantoms. This is far from the case if it's treated well. With the right treatment, and especially if it’s caught early, you can recover incredibly well from acute schizophrenia, as you can from other mental illnesses.

I'm realistic about my prognosis: I might have a relapse at some point in the future, and do sometimes feel depressed about that. But now I know that I can recover well, it’s less scary. I'm back at work, socializing, keeping fit, and playing soccer like I was a year ago. I’ve even been on vacation. I’m not quite ready to move out of home yet, but that might be due to laziness more than anything.

My biggest piece of advice to anyone who starts to experience any psychological symptoms they’re not used to is to tell someone. Anyone. Make it a conversation rather than something you carry around yourself. Mental illness is no different from physical illness—it just involves a different organ: the brain. Don’t worry about asking for time off work, or about telling your boss that you’re feeling unwell, like I did. Looking back, hallucinating that invisible phones were ringing when I still had some grip on reality should have made me reach out to someone. Shame can play no part when it comes to looking after your mental well-being, and we should be as finely tuned to our mental symptoms as we are to our physical ones. Being a master of disguise, like I was to even my own mom, is nothing to be proud of.

If you're feeling out of sorts, talk to your doctor. Demand emergency appointments if you have to. Even if you think it sounds silly, or like something that will blow over, telling someone about how you’re feeling is the best thing you can do. I was dealt with as a psychiatric emergency, and as we all know, the hospital is astounding in an emergency. I don’t know what it’s like for others that don’t present like I did (I’ve read all sorts of horror stories about shoddy, delayed treatment online), but I do know that staying silent about feeling unwell is the worst thing you can do. People are always far more sympathetic than you think they’ll be.

It’s 2014. We need to stop treating mental illness as something taboo, something that will stain us forever. And that can only start with ourselves.

1 comment:

Unknown said...

Thanks, Daniel Smith. Thanks, Bill Harryman.

They recently had an event at the local library, "How it feels to go to war," and I wrote the Executive Director that events like that, knowing the insides of people who face extreme situations, is something very important for citizens to know about.

We learn the "outsides" of what soldiers do and what psychotic episodes look like, but not what the experience is like.

I think an article, like Daniel's is vital such that we can best know our fellow human beings.