Despite these wild times, I am still on track to publish my first book (now you know why I’ve been more or less absent from my blog recently). It’s an incredible and difficult experience, writing about your own life, and remaining honest forces you to confront yourself on many levels. My memoir, which will be intermixed with nonfictional research and personal accounts, “Asking for Empathy: stories of psychosis and healing” is in the works and can be expected to be published, thanks to Georgetown Univerity’s Creator Institute, in the Winter of 2020. Writing a book has been a goal of mine since I was old enough to hold a pencil, and I’m beyond excited to share this announcement with you.
If you are interested in purchasing a copy of my book please click HERE to secure a copy while they still last! There are many options from e-books to hard copies, and even an option to purchase more than one copy. I’d love if you’d help me get my story out there!
From my book, Asking for Empathy, which has been greenlit for publication!! (winter 2020)
Allow me to introduce The Schizospectrum. Something I deeply believe in and hold in high regard.
You may have assumed schizophrenia to exist in a vacuum, a static illness with defined, consistent symptoms. You’d be wrong. There is reason to believe that schizophrenia exists on a spectrum, ranging from very few episodes to many episodes in a person’s lifetime. And for everyone who battles schizophrenia, symptoms are as unique as the finger-print. All people with schizophrenia experience a different range of symptoms, all at different severities. And those of us who experience hallucinations know that each hallucination is intensely personal and exclusive to that person only; no two hallucinations are the same.
But I believe we can take it further than that. I believe that psychosis is just an extreme deviation of a normal human experience. I believe that everyone exists on the spectrum, not just people with diagnosable psychosis.
For instance, lots of people have experienced fleeting paranoia when they’re alone at night or stressed out in a crowd; lots of people have experienced occasional voice-hearing like their own name or the voices of a loved one after they’ve passed away. Many people have experienced low motivation or have seen something out of the corner of their eye. Psychosis significant enough to interfere with a person’s life, or require medication, is only a normal human experience extrapolated into something more severe.
It is very unlikely a person will get through their life without having some expression of psychosis, however mild. The difference is we don’t call someone psychotic until those experiences affect a person’s life/functioning in a significant way. Months ago now, browsing mental health tags and psychosis content on Tumblr I came across something truly incredible, which I think warrants serious attention and consideration from not only other people with schizophrenia/psychosis but also the public and professionals. I have never in my life seen schizophrenia so accurately depicted. I couldn’t help myself of course and contributed my chart to the thread, adding to many others who had found this an equally accurate translation of the psychotic experience.
I have to thank brilliant user Schizomnom on their Tumblr blog Extrareality BS for the fantastic representation of the psychosis spectrum. Their post I Propose a New Schizospectrum caught my attention. I quickly filled out my chart, uploading it to Tumblr. Below you see the empty chart, (please go ahead and fill one out for yourself), as well as mine. I have also included a chart that might represent what the average person’s experience over a lifetime might look like, while they clearly have incredibly mild symptoms, what is important to recognize, is that they are still on the spectrum.
We are all on the spectrum. It is completely natural for the human brain to fill in missing pieces of reality with what it thinks should be present in any given experience. The problem arises as the brain struggles to fill in the gaps with the appropriate information. Paul Fletcher, Professor of Health Neuroscience at the Department of Psychiatry in Cambridge, explained this concept brilliantly in his Ted Talk, Psychosis: bending reality to see around corners. For people at the more extreme end of The Schizospectrum, our brains are less adept at providing accurate information. We might fill in the silence of an empty room with voices, or kickstart a paranoid episode when there isn’t anything to be fearful of, our brains may conjure hallucinations or even hijack our realities completely. Some people may hear voices constantly while others only occasionally.
The point is psychosis is a spectrum and we all exist on it, and it’s important to remember, as you find yourself automatically judging someone with psychosis, that your place on the spectrum is subject to change without notice.
Sometimes I imagine my head is full of colorful sand, instead of just plain dirt, and the ocean, which moves inside of my head is a colorful ocean too. Lapping the shore, a mouth with many voices. And sometimes I imagine that I am the moon, in full command of the sea. But I’m not, and I never will be. I am not the ocean either, for the ocean is inside of me. And I am not the many voices, for they exist alone. And I am not the sand. Perhaps I am just the sky, which holds the moon, pastel and empty, covered in clouds which only drift but never say. But I am not the sky, but the sky is my skin, pale and warm, and covered in feelings which only drift but never stay. Perhaps I am the whole earth, spinning quietly in space. But I’m just a lonely body, feeling always out of place. Maybe I’m the stars, dying over and over until I realized that I was more elegant alive. I’m screaming at the speed of light. Maybe I’m the void that holds it all. Dark and cold, lay bare over the rapture of conception; heart beating languidly, pumping blood into an old skeleton, into old muscle, into old skin. I am in love with myself, the void of space. Dappled and naked. I am in love with my cool darkness. I go forever onward, even while the many voices still find their way into my ears.
Or, maybe, I am not vast enough to be the void.
Maybe I am quite small. More insignificant than the starts or the moon, or the earth, or the oceans or the sand. Maybe I don’t exist at all. Maybe time doesn’t exist either, and my psychotic brain is swinging to the rhythm of its absence. Where is time to do, and time to die, and time to live, and melt and fill the sky? Time is the substance I am made of surely, time is a river which sweeps me along, but I am the river; it is a tiger which destroys me, but I am the tiger, it is a fire which consumes the days until all the days are gone. But I am the fire, I am the fire.
With the seemingly huge increase in fascination with naturalistic approaches to illness it is important to remember that not everything can be treated without the use of medication and/or therapeutic intervention. I see people online or on other social media platforms that herald their ability to live with a serious mental illness without taking medication. While I entirely respect their choice to tackle their illnesses homeopathically there are a few vital things to remember:
- Some illness do require medication regardless of how much you don’t want to take them.
- Needing to take medication isn’t a bad thing. It doesn’t make you a flawed person.
- Taking medications does not change who you are. If anything medications should ground you. But medications never influence personality. You can and will still be you if you choose to take an antidepressant or antipsychotic.
- It’s a journey. From becoming open to medication as a treatment option all the way until you pick it up from the pharmacy and try it for the first time. It’s a personal journey for everyone who decides to make it and for those who do make the journey, every journey is different.
I do not, in any way, want to disrespect or discredit those who go med-free. I very often find myself, envious. I cannot fathom the difficulties of facing something like bipolar disorder every day without medication, at least, not anymore. Many people who still are waiting for a diagnosis go unmedicated. I did, for a few years until my second serious hospitalization. I just remember everything being so fast (manic highs). I vividly remember, at the beginning of trying Zoloft for the first time, going out and laying in the street, waiting for oncoming traffic. And then I remember the achingly slow, godawful, empty, quiet suffocating effects of a depressive episode (much more common than a mania for me). And then the full-blown psychosis. Voices upon voices upon voices. Entirely fake people, fake memories, misleading paranoia; I could go on.
Anyway, Zoloft didn’t work. And Prozac made me vomit. Risperdal vanished a week’s worth of hospitalization from my head; like it never happened. Effexor gave me only more anxiety. Zyprexa made me too dizzy to stand. Abilify didn’t do anything at all. Lexapro destroyed my sex drive. I even had a traumatizing experience with Haldol in the emergency department. And none of these meds treated my symptoms. I just bounced in and out of hospitals, finding myself often in the back of a cop car or an ambulance often. A nurse often joked about getting me a frequent flyer card. I didn’t find it funny. I even started seeing some of the same people as they, and myself, were tossed around like cot coals or unwanted clothing items. It only dehumanized us, the system. And there I was, often psychotic, young, confused, my brain wacked out from medication after medication with no luck. But then I found Seroquel and my brain cleared up like a self-cleaning oven. I stopped seeing things, with only the occasional visual hallucination. The only hallucination I see these days is of my childhood that I’ve written about in the past. And while I still hear voices constantly, most days they are a dull roar instead of a concert hall packed to the gills.
None of the homeopathic remedies I could’ve done could treat all the medications before had failed to do.
You might disagree, but the summer before Seroquel, just before I turned 21, I was on the homeopathic treatment kick; hard. And of course I was, the system had failed me. Horribly so. I tried all the herbs and all the crystals, and the smudge sticks, and incense, and acupuncture, yoga, and the oils. Standing in the bathroom making St. John’s Worth tinctures, with a head full of voices and a monster standing in the kitchen banging pots and pans around.
Let’s just keep it short. Nothing worked. But after I was diagnosed with Schizophrenia (later changing to schizoaffective bipolar type) I found a great doctor. She put me on Seroquel along with increasing my Lexapro and adding Vistral. I was on a lot of Seroquel. But hey, the radio wasn’t talking to me anymore and I could sleep.
Which then became pretty much all I did, between making art and sleeping I took my medications diligently. A year later I found an even better doctor, who wanted to focus mostly on improving my quality of life. She saw that Seroquel was working but also saw that I was on too much. Together we slowly lowered my dose and now I take 400mg spread out in three doses a day. I got off Lexapro after a couple years because of sexual dysfunction and now I’m on 300mg of Wellbutrin (which has been the most successful medication for depression I’ve ever been on). But I don’t say all these things because I’m trying to discourage you from medications.
I know how hard finding the right meds can be. I know how scary trying new meds are, the fear of the unknown as you choke down pills. And I know how nice a lot of these homeopathic treatments sound but chances are if you have a serious mental illness medication(s) are going to part of yourself at some point. And that’s okay!
That doesn’t mean that you can’t incorporate those things into your medical treatment. Because yoga and meditation are healthy, and if crystals and incense make you happy then those are good things too. You can have a balance of these things as you start your path to recovery. I use things like yoga, weighted blankets, breathing exercises, meditation, and exercise, among others, as supplemental to my other treatments. Healthy exercise, a good, trustworthy doctor, community and family (or friend!) support, medication, therapy, and positive engagement with a hobby or activity are all HUGE factors as to how well someone recovers from a serious mental illness. But removing any one of those things from the equation destabilizes everything. Like a bridge, if one part goes, then so does the rest.
I don’t like people who pill shame, because, honestly, there is nothing to be ashamed of. I believe the polar opposite to be true. You should be proud. You committed yourself, to get better, even if the process is trial and error. Anyway, the long and short of it is this. Don’t feel bad about taking your meds, feel proud and strong and badass; because you are. Don’t let naturalistic fads get in your way of accessing the correct treatment. Don’t give up, you never know if the next med might work. Reach out for support if and when you need it. And, find a good doctor, who you trust, who is willing to dig deep with you, find the right med(s) and the right dosage. Just remember, you aren’t alone. You’re doing what you need to do to live your best life. For many, many people with serious mental illnesses like schizoaffective disorder, medication compliance can make all the difference in someone’s quality of life.
Finally, if you don’t remember anything from this post remember this: if you can’t make your own neurotransmitters, store-bought are just fine.