“Morning Sun Cemetery is an old civil war ground filled with unmarked tombs of unnamed soldiers and thick tree roots that bubble up, making the ground uneven to walk on. I’m sure it’s less ominous and even a good reminder of our history during the day. However, it was a participant in one of the worst days of my life when I stumbled through its carnivorous gates in the dead of the night. The streetlamp behind me left an orangish circular hue on the ground, a manmade morning sun of its own, that didn’t even illuminate the entrance sign. It was like it knew to keep a respectful distance.
Beyond me, flickering, full-bodied shadows raced between the headstones and the trees that once stood tall but now seemed crooked. The heartbeat in my ears was deafening, but not quite enough to drown out the sound of worms swimming underneath my feet. My legs gave out while I threw up and shook from the cold air around me. It felt like my brain crumpled up and fell out of my lips as I imagined what my life used to be like. How did I end up here? I laid down in essentially a puddle of me and tried to pray to the stars, but the shadows dripped into my peripherals until they overtook my vision. As the wind, or whatever else was with me, howled in my ears, I couldn’t help but feel like this was a welcome home party.
This was what it was like being unmedicated as someone with schizoaffective disorder. Writing about my episodes like a narrative helps me pretend it was just a story and not something that actually happened to me. I don’t know if it’s healthy, but it allows me to talk about things I previously couldn’t. During this time, I was also undiagnosed because I wasn’t sure if I was sick or not. The google results said to get professional mental health help, but every fiber of my being thought I was being demonically possessed.
It’s like looking up at the sky on a clear sunny afternoon and everyone around you is saying, ‘Wow, the sky is so black today.’ But the sky is blue, and you can see it with your own eyes. You genuinely believe the sky is blue because all your senses are telling you it is. However, the minute you say something, you’re the one that doesn’t make any sense. That is why I used to keep things to myself. Conveniently, or unfortunately, the worst of my episodes happened when I was alone. I was living on my own and isolated myself so the demons couldn’t take my loved ones too.
My first psychotic break was at 17 and right around the time I was about to graduate high school. However, it wasn’t until the episode at the cemetery I realized I needed real help. Not long after, I moved back in with my parents at age 20 and began seeing a psychiatrist in the early summer of 2018.
‘I mostly focus on treating symptoms,’ she would say in our first couple of appointments.
Which was fine with me. I don’t think at that time I could have handled a diagnosis, especially one as heavily stigmatized as schizoaffective. We eventually settled on psychotic disorder NOS (not otherwise specified) and bipolar 1 for the documentation needed to get disability services for me to graduate college. Honestly, I was fine with these diagnoses, too. In a way, I considered the ‘not otherwise specified’ part as an open-ended question. Nothing was written in stone yet.
That summer was a whirlwind of emotions, bright blue skies and neon lights, and medications. So many different medications. We found out I was drug resistant to just about any antidepressants I tried, and I was also ADHD inattentive type. Luckily, I didn’t have to go through as many antipsychotics, but the first one almost swore me off for good. Weight gain, trouble sleeping, feeling like a zombie, suicidal ideation were all side effects I was prepared for, but my mental and physical health was not ready to go through two months of uninterrupted mania. I haven’t been manic before in my life, but this new medication made me feel like I was jumping out of my skin 24/7.
Akathisia, which is kind of a combination of full-body restlessness and anxiety, wouldn’t let me sit still or sleep, no matter how tired I was. My schedule that summer consisted of getting up at 5 a.m, going to work until 3 p.m., staying out late with friends or by myself until 2 a.m., and then rinse and repeat. It was exhausting to be alive, but I have so much love for the friends and family I had by my side during this time, especially my best friend who always made time for me even being 3 hours away.
I quit the medication cold turkey after learning lack of sleep is one of my biggest triggers for psychosis. However, that wasn’t the only reason why. My hands would tremble every time I brought the pill to my lips. Intuition told me I was poisoning myself, and that was rather believable given the symptoms I had. My only problem was I was coming off of weeks of a medicated high, and you should never stop taking medication without being monitored by a professional. The resulting low left me staying up all night writing goodbye letters to each one of my friends and family members. To this day, I am eternally thankful for the friend that came to pick me up that night when they noticed something was off.
Even with its fanatical conclusion and frenzied moments in between, the summer wasn’t all bad. I still look back on the memories of laughter and buzzing downtown lights. I slowly started opening up to people in my life about my mental illness. The learning curve to psychosis wasn’t as steep as I thought it would be because of my experiences. Preparations were also made for the upcoming fall semester to get me back on track after almost failing out. This was a painful period of growth, but it was underlined with traces of hope. I was starting to breathe the air of higher places. Even the colors seemed almost brighter.
A couple of doctor appointments later and into the fall, I was put on my current antipsychotic. I remember being so nervous to start treatment, and my stomach would tie itself into knots every day while I waited to feel the familiar craze. Except it never came. There was a little weight gain overall and nausea when I took it before bed, but other than that I felt stable. My hallucinations were starting to subside. The voices never fully went away and still get louder during moments of stress, but they do feel dampened. The ever-consuming fear of being watched by a demonic presence slowly lessened, too. I still feel him, but I’ve learned to manage it.
I eventually switched majors from physics to something I enjoyed, Earth Sciences. My advisor and I shared a love for meteorology, and disability services allowed me the resources I needed to be on a level playing field with the rest of my class. I started individual and group counseling sessions through the university. It wasn’t the life-changing therapy I needed, but, hey, baby steps. And for the first time, my medication was improving the quality of my life.
It’s funny. If you would have told me years earlier I would be graduating from my university magma cum laude, I would’ve called you the ‘crazy’ one. I would have had the doctors to back me up, too. ‘Maybe college just isn’t for you,’ they’ve said to me.
However, after an extra semester and several 4.0 terms, I graduated! A lot of my college experience was taken away by my illness, but I will always cherish the last couple of semesters.
My enjoyment came from diving into my classwork and engaging in passionate discussions. I was a product of Johnson Hall; all of the classes I took were there. Until the pandemic switched us to online learning, I got to see my favorite professors every day. I knew a lot of the students in my class as well. I still remember getting my commencement package in the mail when time got closer to graduation. I had no clue I graduated with honors. Looking at all the memorabilia I had dumped on my bed, I picked up a cheap-looking tassel and some other trinkets to toss since I had no use for them. My mother snatched the rope out of my hands when I walked past. ‘I think this means something important.’ Turns out it did.
While I was ready to move on to new beginnings, it was a little sad and disorientating. It was time to start a whole new chapter, with a whole new routine. My entire life was shaken by anticipatory stress because I knew what I had to do next. I was going to move almost 2,000 miles away cross country to chase my dreams for travel and to live with the biggest cheerleader in my support system, my significant other.
It was here in Nevada where I started seeing a therapist and a new mental health team, and when I would finally receive a diagnosis of schizoaffective disorder depressive type. Schizoaffective is a combination of schizophrenia and an affective (or mood) disorder. Symptoms for me include visual and auditory hallucinations, voices, delusions, major depression, memory loss, concentration problems, flat affect, trouble with sleeping, problems with speech, and others. However, it’s important to remember everyone’s experience is different. There are many other types of symptoms that exist and there is no one way to be schizoaffective.
I thought hearing this diagnosis would crush me and destroy any spirit I had left. But after listening to the verdict, I only shrugged my shoulders. It finally made sense after all these years of wandering aimlessly. I didn’t have to be a chicken running around with my head cut off anymore; I was a step up, more like Hei Hei from Moana. I had a name for what was wrong with me, and that gave me power. I am schizoaffective, but schizoaffective is not me. I may be mentally ill but I’m also a poet, a fitness junkie, a scholar, a pet owner, a tree hugger, a daughter, a best friend, a sister, and a partner. And consequently, I learned through my disorder I am also compassionate, patient, and kind. Unmedicated, it was acts of kindness that saved me. Now I want to return that favor tenfold by using my voice to raise awareness for psychotic disorders like mine, so others don’t have to go through what I did.
I have a much better relationship with my mental health these days thanks to lots of emotional unpacking in therapy and discovering communities of like-minded individuals like Students With Psychosis. I know now I haven’t succeeded in my life even though I have a schizoaffective brain; I am where I am today with my schizoaffective brain. It may have caused trauma and setbacks, but it allows me to easily dismiss the rules. I get to see things in a way I’m told not to, and that I’m not supposed to. My mental illness lets me get creative, and I’m proud of that.
Things aren’t perfect now, I still have episodes and problems staying on my medication, but I have direction. I used to think my illness ruined my life, but in reality, it has given me purpose. Educating my community and helping the people around me are especially important. I try to wake up and spend each day in a meaningful way. Life doesn’t always allow it, but I try to value the present because you never know what the future holds. Honestly, I don’t know if my illness will get worse as I grow older. But while mystery and uncertainty may scream from the void in front of me, this time it will be I who takes the first step.”
This story was submitted to Love What Matters by Baileigh Renfrow from Fallon, NV. You can follow their journey on Instagram. Do you have a similar experience? We’d like to hear your important journey. Submit your own story here. Be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.
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