The Schizospectrum

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.

 

Welcome, Psychosis

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.

 

Finding the Right Medications Can Take Years, but it’s Always Worth the Journey

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:

  1. Some illness do require medication regardless of how much you don’t want to take them.
  2. Needing to take medication isn’t a bad thing. It doesn’t make you a flawed person.
  3. 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.
  4. 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.

 

I went to New York!

I have two work from home jobs, both of which are close to the same in their purpose. I make social media posts and I get paid for it. I LOVE doing it, especially since the two organizations I’m working for are non-profits centered around helping and advocating for people with schizophrenia and disorders related. These positions are pretty new for me, only having started both over the summer. I’ll give them both a little plug right now. One of these organizations is Strong365, who I’ve been for volunteering with since 2016. Their primary focus is on helping young people access treatment for their first episode of psychosis. I’m also on their advisory board, they’re amazing and you should support them wholeheartedly.

The second organization I work for is perhaps the leader in advocacy for psychosis and schizophrenia-SARDAA. They’ve been around since 2008. I ended up working for the organization sort of by accident when I reached out by email for volunteer opportunities over the summer. They got back to me, informing me they needed some back up with their social media accounts. I passed a small test and then came on board as an assistant to the social media lead. But after doing well and significantly increasing engagement, they offered me a stipend. I love working with them and they are hugely supportive of me. Just two days ago I got two dozen roses delivered, unexpectedly, to my doorstep. After a confusing, hesitant minute from both my partner and I as we opened them, we expressed a sign of relief. They were from SARDAA, wishing me a speedy recovery.

Now that you have that bit of background I’ll jump into my trip to NYC. Back over the summer, after I injured my back again, I was asking by SARDAA if I was going to attend the Brains On Broadway event in New York City. I’d been advertising this amazing event all summer and I was super excited for it but hadn’t made plans to go because I was expecting a more expedited surgery (and honestly, I really didn’t believe in myself enough to travel to New York alone). I wanted to go but I was too scared, also I was in a lot of pain from my back. When I found out my surgery wouldn’t be until after the event, and after some encouragement, I thought, what the heck and decided to jump in feet first.

The trip would be paid for. The plane ticket, the hotel room and I was even fed. Additionally, but certainly not less importantly, I got to sit in on a panel of experts. Listening as they discussed the leading science and thought on schizophrenia, it’s classification (brain illness or no?), and how to best treat and support those with it. I was able to hear the experts talk about the cutting edge of psychosis care. Plus, I had been advertising it all summer so it was wonderful to see the culmination of all my work. I was able to sit on in on a focus group forum along with experts and other patients about how to better tailor clinical trailers to people with schizophrenia. The entire time I was making posts for SARDAA, all the way through the event and into the reception. I also got to meet Glenn Close, which was pretty cool. I felt valued that night and I also felt enlightened in a way, not only because of all the amazing stuff I got to learn but also because I had also gone way out of my comfort zone, successfully.

To put it in perspective: I had never gone to an airport, flown on a plane, hailed a cab or gotten an uber, checked into a hotel alone, traveled alone (especially out of state), or been to NYC alone. That’s a whole lot of first-times, and when you have a serious brain illness all first-times are big deals. I am so proud of myself, no matter how nervous I got when I was waiting to board my plane, sweating it about the size of my carry on. When the plane took off I cried. For a lot of reasons, I was already really overwhelmed. All the noise and stimulation and voices, and then, of course, we were about to take off. I have a weird fear regarding moving at speed, even sixty-five in a car makes me want to cry, so when I felt that first lurch of the plane reaching speed I felt like I was going to die. But once we were in the air it was one of the most beautiful things I’d ever seen, I was lucky enough for it to have been a nice day and once we were above the clouds it was like a dream. When I landed in NYC it was chaos though, as a Mainer who’d never really traveled and is easily overwhelmed I was…well…overwhelmed. I met up with another woman who worked for SARDAA and was headed for the conference, together we caught an Uber and headed to Times Square where our hotel was.

 

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And of course, not only was it the nicest hotel I’d never stepped foot in, but I was also somehow, on the 45th floor of the hotel. The lobby was crowded and noisy. I said goodbye to my SARDAA friend as I got in the elevator, my ears popped three times as I headed 45 floors into the sky. But the view from the hotel room was incredible, and as someone who had never gotten to do any of these things before, I feel incredibly lucky to have gotten a room on the top floor, overlooking the city.

The conference was amazing. I pushed myself for this. But I couldn’t be happier that I did! I had such an amazing time! I met so many brilliant physicians on the cutting edge of brain illness. I listened to Elyn Saks give an important lecture. I met Glenn Close! Heard some kick-ass saxophone from Paul Taylor. I saw some amazing people get awards for all the incredible things they are doing to make the world a better place for people with psychosis. In the end, even though I was terrified a few times, I can’t believe I was able to do all these awesome things. I even conquered the return trip, riding out the turbulence on the plane ride home. I even made it back in time to vote! And to commemorate the experience SARDAA gave me a little surprise, a small thank you award which is now cozy on my bookcase in my living room.

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Return to Self Update: Back Injury Taken Care Of and Possible Med Changes in the Future

Boy, do I have an update.

Back in July I somehow messed up my back, again, the resolution of which took six months. I’ve just had surgery and I’m in recovery now. Which is why I haven’t posted much, I was in a ton of pain, nearly intolerable, I even had to drop out of the fall semester. Also, a lot of the content which I have written that I really liked I’ve submitted for formal publications. I’ve just had another publication that should be out in about a month (which I’m thrilled about)! An article that I am particularly proud of has been rejected numerous times. I’ll be trying two other magazines before I upload it here. Oh also, I went to NYC, ON MY OWN. It was an amazing, eye-opening, get-out-of-your-comfort-zone experience, I’m planning a full post on the trip.

Plus, I think I’m going to go full-on and write a book.

I’ve signed up for classes again this spring, but I’m sticking with online ones so I can really take care of myself. Seroquel had caused me to gain more than half my body weight, I went from about I went from 120lbs-185lbs. My goal for the new year is going to take the leap and try a different antipsychotic, something I’ve spoken at length with my doctor about. We also plan to add Metformin to aid in weight loss once I make the switch. I switched from Lexapro to Wellbutrin because of sexual dysfunction (yes, I said it!) and weight gain but it wasn’t enough on its own. We had to wait for my surgery before making these changes, now that it’s over I plan on starting the process by the end of December. I don’t expect to lose all the weight, but my goal is about forty to fifty pounds once I add exercise (I have an exercise bike that needs some use). This back injury really, really derailed my plans. I’m looking forward to getting back to myself, and back to my life.

If you ever want to know more about my personal life, I have an Instagram. If you have one too feel free to follow me @schizo_affected