It’s a beautiful spring day. You’re cruising along a stretch of ocean highway. The top’s down, the Beach Boys are crooning, the motor is humming, and the sun is streaming in. Things are good. Suddenly, the idiot lights on the dashboard come alive. The car stops dead in its tracks. That comfy ride you had been enjoying, perhaps without even realizing it, has ended.
In my most recent essay, I spoke about finding stability. But what happens when you have stability and you find that it’s still so easy to lose, given one or two unfortunate events? Finding stability is a challenge, but maintaining it is just as complicated and stressful. It’s an inevitable, and often cruel, tightrope act of living with a serious mental illness. I’ve been stable for a few years now, (and I’m taking a chance even saying that), and there are several things I’ve learned about maintaining that stability that may be helpful for you, or for someone you love.
The building of supports has helped me tremendously. If I am, in fact, walking a tightrope; my supports are that giant, inflatable cushion underneath so that, if I do happen to lose my footing I have a chance at a safe landing. Amassing and cultivating your supports is a process that can take years, but it is essential to have people and plans for when things may falter.
One thing I’ve done is build a career around people and organizations that understand if I need to take some time to myself to focus on my mental health. This includes organizations centered on furthering education about mental illness that have compassionate knowledge about how mental illness can affect a person. I realize this is not something everyone can do but being open about your illness to your superiors at work can open some doors for you in terms of providing the net that is so necessary. Of course, disclosing your illness is a very delicate matter that requires a considerable amount of thought. There may be consequences to disclosing and while, in a perfect world, there shouldn’t be, the reality is that disclosure may require some counsel on the part of your doctors and your support structure.
The people you choose to surround yourself with probably matter most of all. Both friends and family have my back through thick and thin and, while this network is small, (fewer than ten people), these people are there for me when I slip and need help getting back up. I recognize, too, that many people with a serious and persistent mental illness would do anything to have ten people on their side. My allies understand my illness and they know how to support me. Support, like all aspects of relationships, should be a two way street. My brother and I are in therapy dealing with our own individual mental health issues, and we help and support each other as best we can.
I also believe that maintaining stability without an abundance of education is nearly impossible. Education could mean reading relevant subject matter, or discovering new therapeutic modalities that I can then try out with my therapist, or researching coping strategies for the problems in my life. Coping with mental illness is my full-time job and, while it can anger me and cause me a great deal of heartache, it’s an endlessly fascinating “occupation.” There are many authors with diverse and intriguing perspectives who specialize in mental health and, when a new book on neuroscience comes out, I quickly get my hands on it. I’ll do anything to get even the smallest inkling on how to deal with the thoughts that careen through my head.
Educating myself about schizophrenia is perhaps one of the most beneficial steps I’ve taken since being diagnosed. The knowledge I have gained has helped me analyze the mechanisms in my brain that cause things to erupt or die down, and I’ve used plenty of strategies I’ve learned in dealing with my illness and becoming a productive member of society. Having these has helped me parse out my paranoia and my delusions from reality.
Implementing knowledge and skills gained from reading, research, and therapy is the final piece, for me, of the stability maintenance program. Acquiring tools is great, but, if you don’t use them; then it’s all for nothing. I use deep breathing almost daily when dealing with my anxiety and paranoia, and that’s something I wouldn’t have learned without reading about anxiety. Reality-testing, (the process of attempting to parse out delusion from fact), is another little nugget has saved me countless hours of frustration and anxiety. I learned about reality-testing from reading about the function of delusions, combined with countless hours of practice and talking with my psychiatrist and therapist about what things are real and what things are neurological impulses bent on deceit.
I have often talked about my delusions that I am, or will be, under attack from people that I deem to be shady characters. I fear that they will make fun of me or verbally assault me somehow. Working through these feelings in the safety of my therapist’s office has shown me that, the vast majority of the time; I’m projecting my own fears on these innocent people. It’s frightening when you can’t trust your brain, upon which you’ve relied to carry you through the world, because it is now telling you things, sometimes harmful things, that have no basis in reality.
In flashing moments of panic, the pulsating pressure of paranoia, or during extended periods of depression, it is critical that you have the tools and people in place to support your stability. As you live with an illness, you learn what is necessary to keep you grounded in reality. Like learning how to do a Sudoku puzzle or read a map, it takes learning and effort until using these tools becomes second nature.
Maintaining stability is a delicate dance that, at times, can be very unstable and can cause some strife trouble if you fall. However, building these support structures, educating myself and using the tools I’ve learned has kept me, for the most part, on the highway, my motor purring away.
EDITOR IN CHIEF / EDITOR: Gabriel Nathan | DESIGN: Leah Alexandra Goldstein | PUBLISHER: Bud Clayman
Finding stability, like anything else worthwhile, takes time and effort. It also takes an openness to learning, and and an openness to failing. Finding stability a process of nearly unparalleled complication as you work, practice, and commit to wellness and discovery. Achieving stability has been the overarching goal in my life up to this point and to say that I’m perfectly healthy and stable would still not be the truth. Living with schizophrenia brings the instability you feel as part of the illness. This includes not only the psychosis, delusions, paranoia, and other symptoms, but the overarching experience of living life with mental illness.
Maybe schizophrenia causes you to be unable to interact with people due to debilitating anxiety. Maybe it causes you to lose your concept of self and everything that you had going for you: school, work, family, friends; all of these can deteriorate slowly, or quickly, depending upon the severity of your illness. You don’t know how to keep afloat in the world because, compared to the things that are going on in your head, reality is so seemingly inconsequential.
You have a special mission!
The government is reading your mind!
You’re a prophet and you’re communicating with aliens!
In any of these cases, normal life has little to no relevance to you. Once you’re diagnosed and you come face to face with the reality that the things you experienced were only in your head; you are now on the long road of rebuilding your life and your relationships to a point that’s stable.
Stability requires a great deal of awareness and reflection, as well as the ambition to put the discoveries you make along the way into practice. It’s taken me eleven years to get to a point where I don’t have to worry every day about paranoia and delusions. It’s been incredibly challenging, but also endlessly rewarding. Many young parents talk about how having a child is a second full time job–I think that finding and maintaining stability is probably just as consuming, taxing, and life-affirming.
Looking back on when I was first diagnosed with schizophrenia, I can remember the consuming confusion and pain I felt at having been told I was “crazy.” On top of that, I was still trying to cope with delusions and paranoia. I believed that words, song lyrics, or circumstances had special meanings, that everything was interconnected and intertwined and that I could figure out the secrets of the universe, if I just paid enough attention. That contributed to a heightened awareness that has stayed with me, but I also desperately wanted to forget my diagnosis and be normal, so I essentially devoted my life to practicing being “normal.”
What I mean by “finding stability” is getting to the point where I was as normal as they came. This meant working on unwinding my delusions and paranoia, but also studying and practicing human behavior. I had to come to terms with, and refute, the things my brain was telling me by analyzing my thoughts that seemed to appear out of nowhere. I had to learn to recognize these thoughts for what they were: a result of my imbalanced brain chemistry, and I then had to learn and accept that the things they were saying had little to no basis in reality. Essentially, they were just components of my own insecurities — haunting me with every social interaction and every public appearance. I had to confront these insecurities that were so deep-seated within me that I’d spend hours and days obsessing over them and cowering in fear.
In therapy, somewhere along the line, I learned about acceptance, but it didn’t really register until almost a year later. I was sitting on my porch thinking about how painful and harmful my own thoughts were to me. The notion that, if I accepted these insecurities, I wouldn’t have to fight them so hard appeared in my head, and this notion changed the entire course of my recovery. Instead of trying to find a way around my insecurities, anxieties and paranoia, I learned to embrace them as facets of who I am. Accepting my anxieties took an enormous amount of pressure off my shoulders and showed me that I could relax into being me. The meds helped, but these techniques– recognizing, analyzing, and accepting– improved my clarity vastly. Pretty soon after I learned to accept myself and my thoughts, I learned to relax and I found that social interaction and appearing “normal” came so much easier. I was allowed to not worry about how I appeared to other people and I was allowed to not worry about whether or not I was crazy because I had completely come to terms with the label of crazy. “Crazy” was a part of me, but it wasn’t all of me.
I was able to take a deep, powerful breath and see that I was okay.
I was perfectly valid as an individual, and my thoughts were valid. Realizing your own validity and worth– that you are not some disgusting animal for having mental health challenges– is something I wish I could tell everyone I come across. It’s important to know that you matter in this world and that your thoughts, though at times these can be terrifying, are just thoughts. That’s where I found the most stability; in that notion of acceptance alone. After that, things seemed easier, more real, and I was empowered to claim some semblance of control over my life.
As the years passed, I continued to practice my social interactions, and my attempts at normalcy in every interaction that I had with another human being. Even completely inconsequential encounters with the pizza guy or the lady at the gas station were opportunities to rehearse my act of playing a “normal human being.” While things got somewhat better, I still suffered from anxiety and fear of what people thought of me. I still tried hard to appear as normal as possible for a long time. I tried to appear friendly and gregarious– like the social butterfly I was in high school. But I was still afraid.
Finally, after a long day of trying, I was laying on my couch listening to a hip-hop record, wondering to myself where it was that these rappers got their confidence. I decided, in that moment, that I was going to try not to be afraid anymore. That was another major turning point in my journey to find stability. In every situation where I felt my anxiety levels rising, I took a deep breath and said to myself, “I am NOT going to be afraid.” This meant that I didn’t have to try to be normal anymore, I didn’t have to worry that people wouldn’t like me if I wasn’t normal. If you think about it, nobody’s normal. Everybody has quirks and crazy moments, but it’s okay because they are who they are, and you are who you are. I am who I am. Not being afraid meant that I could be who I am. What the process comes down to is learning how to be you, not learning how to be a perfect human being. I wish I had known that eleven years ago but, in the end, I wouldn’t change the whole process of self-discovery and finding stability for anything in the world.
EDITOR IN CHIEF / EDITOR: Gabriel Nathan | DESIGN: Leah Alexandra Goldstein | PUBLISHER: Bud Clayman
I lost my hearing in a psych ward.
Let me explain. It was not so much that I lost my hearing; it was that I could not hear well. I suffered from a terrible earache. I used to get earaches all the time as a small child. This one was the worst, or perhaps my capacity for dealing with such pain had simply decreased over time. I had not experienced an earache in over ten years when this particular earache occurred. When I was in the psych ward.
This earache affected the way I could hear, meaning I couldn’t really hear much at all. I was in the psych ward for a number of reasons, some of which I still don’t understand. The doctors explained the reasons for me being in the psych ward with precise, medical terms. I recognize that that wasn’t all of it, though. Those medical, clinical words could not explain the sum total of why I was there. I did eventually recognize, however, that that is how you get out of a place like that: voicing an understanding of why they say you are there, in their terms, and complying with the way in which the doctors believe you can safely live outside of the hospital. They did not want to hear my side of the story. This was not about justice; it was about compliance, as are so many other things in life.
The doctors thought that my mental illness was clear. They did not want to know what could lead a person to this mental state. They just wanted to diagnose it, and give me pills. The earache, on the other hand, confused the doctors. They could not figure out how to help me hear well again. They could not figure out the best way for my ears to heal. They could not determine exactly what the issue was, although they recognized that an issue existed. The insides of my ears were red and irritated.
I was red and irritated. I wanted the doctors to see that. I wanted the doctors to stop looking in my ears because they were not helping my hearing and because there were much more pressing matters at hand. I knocked on their doors to say, to scream, “I don’t belong here!” I only screamed because I couldn’t hear properly. I did not realize I was screaming. Believe me; I wanted my ears to be fixed as well. I’d have been happy to take medicine for my ears but I didn’t want the medicine they were telling me I had to take for my brain. I wanted to address that medicine, the pills that they wanted me to take, before addressing the issue of my ears. So, I said, “Listen doc, I’ll take a flu shot, I’ll take all the vitamins you have, please give me any antibiotics I need for my ears, but that is all!”
And the doctor asked, “Why are you screaming? Your mood seems elevated. There are pills for that you must take.”
And I said some mean words; I said some paranoid words, but only because I was mad and it felt like he was out to get me, not to help me. The conversation was irritating on several levels, one being that I could not hear very well. I had to listen so closely and I had to keep saying, “Please speak up.” I also had to keep repeating myself with phrases like, “no,” and “that is not true.” There was a lot of explaining. There was a lot of repeating.
Perhaps it is important to talk about how I ended up in a psych ward. Perhaps it is important to talk about how I ended up having an earache. I can explain pieces of the first thing. I still do not know why and how I suffered from the earache. I will never understand that earache. I will never understand why I could not hear. I like to think my ears were protecting me from all the medical language, the words from the doctors and nurses about what they thought was wrong with me; I did not want to hear. I like to think they knew, my ears, that is. My ears knew that I did not want to hear those words. Sometimes, I wonder what it would have been like if I had not lost my hearing, if I had sense of everything going on around me. I think my experience would have been altered completely. But my ears seemed to know that I did not want to be there. I wish my throat had known too. I wish I had lost my voice, so I would not have to comply, again.
There were many senses I wish had been altered while I was in the hospital. The starchiness of the bed sheets against my skin. Clothes worn days in a row, beginning to smell. The hospital food; the heavy feeling that it left in my stomach. The pill I’d let dissolve in my mouth, the pill I did not want to take, day after day—sliding roughly against my dry throat when I finally swallowed, as instructed. The constant over-stimulation of the television, forever on in the community room. People coming and going. The dampness of tears on my cheeks and the cries from others in rooms and hallways and bathrooms. It was too much at times. But I continued to be a part of it, in a way that felt against what I wanted, needed.
I feel like I am always complying. It makes me so sad; compliance is a complicated thing. That complication may be one reason I ended up in a psych ward. There are a lot of reasons I was there, but compliance is a recurring theme in my life, or maybe just in life, not only mine. Maybe I’m just bad at dealing with it. Maybe I’m bad at not being heard. Maybe I’m bad at those times when “no” is not an accepted answer. I had been in such situations, several times. I’m angry about them and so sick about them, mentally ill, some may say. I am not only mad (could be read as “angry” or as “crazy/insane”) about those moments but mad (the same thing goes for this “mad”) about the way in which they are dealt.
I wanted justice, not compliance. I wanted justice; I did not want to prove myself. I did not want to always fight for my case. I did not want to always explain the ways in which I was not crazy, the ways in which I was just in fucked situations, the ways in which I was fucked, literally fucked. I did not want to explain. I did not want to need medical proof. But they wanted it, the justice folk; the folk who served the justice. They wanted all of the proof and paperwork. They talked about it in a dramatic, legal way. Again, I didn’t want to comply. I was done dealing with all of it, with all of them. I was going to deal on my own, I decided. So I ended up in a psych ward with an earache. It was painful in so many ways.
When I found the way out of the psych ward, (that way, of course, being compliance), I put some ear drops in my ears. I could hear again, but it sounded too loud. So I cried. I cried for all the loudness. I cried for the lack of understanding. I cried for having to interact with the noise constantly. I was confused and the volume was suddenly so loud. I adjusted though. We adapt; we comply. Sometimes we can hear the things and sometimes we choose not to hear. I’m trying to figure out how to do this and remain thoughtful and aware. I consciously check out a lot these days; I make a decision to choose not to hear. I think it’s what I have to do, for now. I hope it is not what I have to do forever.
EDITOR IN CHIEF: Gabriel Nathan | EDITORS: Bud Clayman and Gabriel Nathan | DESIGN: Leah Alexandra Goldstein | PUBLISHER: Bud Clayman
Living with schizophrenia, I’ve experienced all manner of delusions about the way I think things are, and the way they actually are. Delusions signal a break with reality and, no matter how seemingly insignificant they may be, delusions should immediately be addressed with a mental health professional. Delusions are almost always ridiculous iterations of reality. They are skewed perspectives on the way things actually are, and they can arise in any number of situations. Coming to terms with the ridiculousness of your delusions is a process of awareness, then unpacking and analyzing the delusion — testing it against reality. Finally, you have to accept the delusion for what it is: a strange construct of your mind. (more…)
Living with schizophrenia, it’s pretty much a guarantee that you’ll come up against barriers, some of which may seem insurmountable. You’ll face tough days, weeks, months or even years, and all that pushing for some semblance of recovery or normalcy can easily overwhelm you. Stress is the light switch for symptoms of schizophrenia. As the stress starts to build, your paranoia can increase, you may start becoming obsessive and delusional and you can easily lose yourself in the midst of all these symptoms and find yourself in scary situations. When curve-balls come your way, you have to know how and when to pull back. In essence, you have to be conscious of what you’re feeling, you have to recognize your mind’s reactions to stimuli and be aware that the things you are experiencing are mostly in your head. Having a “wellness toolkit” filled with strategies that work for you will help you figure out your limits and gain an essential awareness of the maximum you can take without falling into delusion. (more…)