You may feel completely powerless in your schizophrenia treatment. The doctor gives you a few pills or shots and then… what? Do you just sit around and wait for things to get better? I think you can do that. That’s definitely what I did for the first few years after my diagnosis. But it’s not something I would recommend. To be honest, those first few years were really awful. That is until I approached my schizophrenia treatment like a scientist.
For me, the three basic things a scientist does are: Observe, hypothesize, and experiment, do research.
Observe the facts.
My schizophrenia can often lead me to think and believe incredible things. But when I observe the facts, those thoughts are contradicted by reality. For example, for the past few years I have struggled with the delusion that an old friend from high school lives in another city and is following me. What brought this delusion to a terrifying peak was when she appeared in my contact suggestions on LinkedIn. I looked at her profile and discovered that she lived where I lived.
I immediately panicked. Was my delusion true? Had this guy really been stalking me for the past few years? I decided to follow the advice I gave in this YouTube video , where I talk about the value of being vulnerable and honest with other people. In short, I decided to contact a high school friend of mine and tell him about my delusion. Indeed, we had a nice back-and-forth text conversation in which he explained that he had only been living where I was for the past six months and that he was using his fiancée as an excuse for this claim. I knew this was true because when I first called him, his fiancée answered the phone and also told me when they had moved here.
Knowing the facts helps separate delusion from reality.
In that moment, I could observe the facts of my delusion; this guy was stalking me. The reality of the situation was that my delusional thoughts did not match the undeniable facts presented to me. And, to add further facts, I am a very boring and average person by most standards. It would be a waste of time for someone to watch me sit in front of a computer all day. As a result, I can use my scientific observational powers to better understand whether my delusions are actually delusions.
Try your schizophrenia treatment with your doctor.
There are numerous scientific articles and claims all over the internet that suggest cures and potential treatments for schizophrenia. At the end of the day, I have found that the right medication will usually do most of the work. However, most medications do not always get you 100%. You will need to find additional tools in your schizophrenia treatment tool belt to get you the rest of the way. Of course, any treatment you try should be in addition to taking your medication.
What you try is up to you. I have tried many different things. The ones I have found to work best for me include a low-carb diet to reduce my positive symptoms and weightlifting to reduce my negative symptoms. Others have found that megadosing vitamins like niacin and vitamin C helps. However, there is also science that cautions against using this practice. This brings me to the next part of treating yourself like a scientist.
Research, read, and consult your doctor before experimenting.
If someone told you that drinking bleach would cure your psychotic symptoms, would you believe it? I hope you reject that completely. However, some claims may sound more believable, such as sticking to a gluten-free diet to reduce symptoms. As always, with any believable claim, I like to find research to back it up.
My go-to place for evidence is PubMed, a government website that allows you to easily search scientific articles. You don’t need to read the entire article. There’s usually enough information in the abstract and conclusions to give you an idea of ??whether something is true or not. I think the key to reading any of these studies is to make sure that their results come from a double-blind trial. If the results aren’t based on double-blind trials, I tend to assume that the results are anecdotal and not worth taking too seriously.
However, if you want to try it yourself, consult your doctor. For most people, there’s no harm in changing your diet or taking vitamins. As long as your doctor thinks it’s safe for you to try, there’s no harm in turning yourself into a guinea pig. The worst that could happen is that it doesn’t work. Alternatively, the best that could happen is that your life changes for the better, as lifting weights did for me.
How Music Saved Me from Schizophrenia
When I tell people that I get paid to research music and generate music algorithmically (among other research topics), I’m usually asked a few questions: How old were you when you started composing? How many instruments do you play? Did you go to a conservatory?
The short answer is: I didn’t know what harmony was until I was 19, I never went to a conservatory, and I don’t play any instruments, thank you very much.
Then there’s the long answer.
Music pretty much came into my life at 16, when I was first learning computer science and spent all my tuition money buying everything that could actually apply programming to solve real “problems,” something incredibly exciting that I’d never been able to do before. Among a bunch of textbooks on computational epistemology, empirical sociology, cell biology, etc., I bought “Notes from the Metalevel,” an algorithmic composition textbook. I read some of it and liked it, but it didn’t particularly appeal to me, and I moved on to other things.
I entered the spring of my freshman year of college. I was admitted to a psychiatric hospital, and my parents learned that the constant pacing, the involuntary frowning, the random dropping of things, and the aimless wandering of the hallways at school were not just “Halley being Halley”—they were symptoms of prodromal schizophrenia that everyone—especially me—had missed.
Personally, I was certain that I had made everyone I knew evil and dirty by allowing fantasies about the FBI to enter my head—in short, I was delusional and lacking in insight, and everyone around me saw that I was doing well academically and not worrying about what we now think of as “signs.”
I don’t remember much about those first six months. Only two things stand out vividly. The first was the day I actually believed the doctors who told me it wasn’t my fault, and a huge weight was lifted off my shoulders (it was much better to be mentally ill than to be evil).
The second was the day I felt ready to get back into programming and happened to pick up Notes from the Metalevel book. It was as if someone had given me a new purpose when I needed it most – music wasn’t going to “solve” itself, was it? So reading music theory theses and using them to produce music became my companion as I completed my partial hospitalization program, went back to being a college student (this time with a good dose of medication and lots of therapy), and eventually started graduate school.
Fortunately, I realized pretty early on that music wasn’t a “problem” to be solved – it was a field with infinite potential (in fact, one of my papers mathematically proved that you could simulate the Big Bang from inside standard music software, just as you can in any known computing system). And that was part of what made it so great. Music production was grounded in empirical reality (believe me, you can tell when you can’t produce anything remotely musical), but it offered a creativity that I had previously associated only with my most psychotic thoughts.
That’s not to say that my relationship with music wasn’t without its challenges. When I have mini psychotic lows, even music can get tied to “that FBI thing.” I can get obsessed with working on music, and I have to rely on my wonderful fiancé to remind me that taking a shower is more important than finishing that one script. But overall, music has been a source of comfort and a blessing to me, just as it has been to so many people throughout the centuries—though perhaps not in exactly the same way.
Schizophrenia in the Cold Season
Dear winter cold season:
You surprised me when you entered my house and decided to rest near my nose, throat and swollen eyes. Today, I see you have found another comfortable corner in the upper part of my chest, which makes everything a little more stuffy. There seems to be no room to breathe. I am frozen. A two-month stay is long enough for you. It is time to go now. Thank you.
Dear scatterbrain:
You need to be more understanding when dealing with fever and congestion. There is no room for either of you today. Please sit back today.
Thank you, kindly.
You know when your eyes open wide in the middle of your sleep? When your spine, which seems to be in a resting position, rises forward at a strange speed, floating like a spirit, electromagnetically suspended above your bed, it makes you wonder if you are still asleep.
And like an exorcism, my head did almost a complete turn. Looking to my left, I saw that a sharp-framed mirror had captured a strange form of human movement that I thought was mine.
My arm was bending upwards at my elbow, without my knowledge, the tips of my branching, slender fingers grasping those red knobby joints that began to rub my tired eyes.
I noticed my face reflected in the square mahogany-framed mirror, blurred.
I turned my attention to the swelling pressure under my upper left cheek, where there was an oval valve that held my vision. Reflexively, I moved my hand under the swollen flesh. My thumb and forefinger began to pull at the flaccid, twitching, ivory-colored knobby skin. Above it, a folded sheet of pinkish gel, covered with wet black whiskers, winked, descended with incredible speed to hit the lower set of eyelashes, pinched the sides, met at each end, and formed a crescent-shaped pocket in which an emerald-green, glassy marble ball of vision was housed. I was moving, rolling from side to side in this slightly oddly shaped, slippery, slimy nest.
I was walking along the curb on cracking red lightning bolts in the green of my nest, passing over and around this cloverleaf quasar, the one my right Hubble lens had caught. I squinted with my naked right eye, squeezing a dull ache somewhere.
And then, like a galactic, spasmodic, elastic, slightly browned Rubber band, I was pulled back for a few moments by the mirror in front of me, where I saw with my own eyes — those dual-pupil quasars — and I turned my peripheral attention back to the black void by my window, by the corner mirror parallel to my other universe. I guess I was in my tiny bedroom.
‘Self-Awareness’ and Schizophrenia
Some people with schizophrenia think their voices and delusions are real. I’ve been on my medication for years and even I have to tell myself that I’m not that popular.
You probably think that’s simple enough. If I don’t, I try my best to ignore them. I believe that some people with schizophrenia hear positive voices in their heads. I thought I could hear God’s voice, and it was God who told me to go to the mental health center in Fort Irwin, California. I also thought that during my second stay in the psychiatric ward, it was God’s voice telling me that I would get the help I needed. Believe it or not, I think that’s the voice that helped me become self-aware; it made me question what I was feeling or, in some cases, whether something was really going on.
Sometimes I hear negative voices too. They can be insulting and tell me to kill myself. It’s part of the struggle. I don’t like to talk about it. When I hear these negative voices, I do my best to stimulate my brain and be active, or try to ignore them.
Realizing that what is going on in your head is not really happening is a tough pill to swallow. It can be misunderstood when a doctor tells a patient to be self-aware or that the voices are not real. That is why it is important to wait. Wait until the medication has worked, and then even the patient will wonder why the voices and hallucinations have diminished. When this happened to me, I felt like I had a revelation. It was cathartic.
I am sure doctors and others in the mental health field struggle with this. No one in the mental health field told me to question what was going on in my head until later in my recovery. No one told me that my hallucinations were not real. I think if a doctor told me that my hallucinations were not real, I would not have believed it.
Maybe there needs to be a better “bedside manner.” I respect doctors, but maybe they should be a friend or maybe a neighbor instead of putting themselves on a higher level. How can doctors do this? Maybe they should start a meeting by talking about the movie they just watched. They might talk about the last football game they just watched on TV. If they don’t like sports, they might talk about their children or a nephew. They might not want to talk about the holidays because even people without mental illness can feel lonely or depressed during these times. So, build a relationship. Show some sensitivity.
Some doctors (I won’t name names) feel that the less I talk, the better. This attitude will not help the patient or the doctor. There are some doctors who feel insensitive to the mental health field. They may even think it’s all the patient’s fault. I ask all the doctors and staff in the mental health field not to abandon us. We need you to be optimistic. Some of you in the field know that we are getting better.
You may have heard of peer counseling. It’s a good program. Patients who have been stable and have been on their medications for a while should be invited back to the psychiatric ward. This will help the patient who is still on their medications because it will show them how far they have come. This will actually help the patient who is in the ward because the patient will see the peer counselor as someone who has walked in their shoes. As long as they are not stressed, they can discuss their past delusions with other patients. Both people may find some common ground. Both will experience hope in seeing how far they can go and how far they have come. Imagine you are encouraging a mental health patient to enter the field of community service. Here are some examples of questions a peer counselor/community worker might ask:
“What medication are you taking?”
“How long have you been here?”
“Do you know you’re feeling better?”
“Do you keep a journal? You should start.”
“How did you sleep?”
“Who is your doctor?”
“Everyone falls down; it’s whether you can get back on track.”
“You know you have to keep taking your medication.”
“Nobody is watching you; you’re safe here.”
“If you’re not compliant, they’ll make you stay longer.”
Here are a few conversation starters. Of course, the staff must decide whether a patient on a psychiatric ward can handle a visitor. I can assure you that on a psychiatric ward, even when you’re around people who have the same symptoms as you, it’s possible to feel lonely. It would be nice to have some positive energy on the other side of the table. How can doctors be self-aware? I know that psychiatrists are in high demand. In some cases, there probably won’t be enough. The ones we have are probably overworked.
“Happiness comes in short doses.” I think that means holding on to the simple things. That could be a diet soda, a cup of coffee or tea, or simply observing nature when you have the chance. Maybe a break room with cool jazz playing (for those of you who don’t know much about cool jazz, you should buy Miles Davis’ “Kind of Blue” to get started) or some other way to relax when you’re taking a break. Anyway, for those of you in the mental health field, thank you for your service. Finally, we should all be aware of our own little piece of the world. We should all be aware of what’s going on around us, whether it’s in our minds or out there. It will help us be mentally and emotionally strong.
What You Need to Know About Schizophrenia
Schizophrenia — sometimes it’s like being in a crowd and everyone is trying to turn around to listen to you, but you’re too busy driving the bus.
Here are some questions to ask yourself or someone with schizophrenia:
Do you believe someone is stealing from you?
Do you get messages on the TV or radio that no one else can hear?
Do you hear voices in your head that no one else can hear?
Do you believe that one or more people can inject their thoughts into you or take your thoughts away from you?
Do you believe that people are against you?
Do you see or smell things that aren’t there?
Forget about thinking you’re a superhero with special powers, because that’s an illusion. It’s also wrong to think that you’re so special that you can get messages from the TV. Schizophrenia replaces rational thinking with irrational thinking. It can cause you to stare at a wall for long periods of time or walk up and down a hallway. It can be treated with medication and still have your senses jump.
Sensory Hallucination
Vision — Someone in the restaurant where my mother and I had breakfast earlier threw my notebook on the floor. My notebook didn’t actually fall to the floor, but I saw him get up in frustration. He was frustrated because I saw it as a hallucination, not a real vision.
Smell — You might be in a seafood restaurant and smell hamburgers.
Hearing — You might hear voices that are offensive or uplifting. Sometimes you feel like people are listening to you or knowing your thoughts.
Sometimes it can be a sense of someone else’s presence, not necessarily in contact. I once thought Bill Murray (comedian, actor) was helping me write a poem. He thought of the line “chasing windmills.”
The man in your head
Holds back his laughter
While you hold your breath
At oncoming cars
And pedestrians
Chasing windmills
And
Belongs to his friends in his head
Flows on the page
No punctuation
From the chaos of the conversation
Takes a lower dose of sleeping pills
But doesn’t take vitamins
He’s in the crowd inside his head
He’s called on often
But he’s nobody outside his own mind
What Should You Do?
Sometimes the drugs stop working, and sometimes it takes you about 10 years to get on the right one. Remember, the pressure to find the right one is not on you. It’s hard to figure all this stuff out, so it’s best left to a professional. You have to be consistent. I’ve taken pills and had shots. Some worked a little; some didn’t work at all. I’m trying a new drug as I write this.
No matter what, don’t give up. Listen to your doctor, get in group or one-on-one therapy, and unless you choose to throw yourself a pity party or something, remember that you’re not alone. I personally quit drinking because alcohol can negatively affect your medications. Sometimes you just have to play by the rules.