What I've Learned About Living With Schizoaffective Disorder

We drove along the crystalline coast, weaving between spouts of pythonic redwoods that hid us from the rays of a boiling sun. My car, a hybrid, crawled along with electric engine humming, no gas wasted. My partner fell asleep. We were on our way up to Fort Bragg to see some sea glass before driving into Mendocino County. I had a freeing haircut and had lost a great deal of weight. I enjoyed the beauty of the outside and the silence in my head.

We pursued the cliffside, took pictures, smiled, laughed, slipped in the ocean, found an old steel boat rusting alongside some rocks. We poked a sea urchin before setting it loose in the tide, and learned how to take live photos on my new iPhone. Everything was perfect.

In Ukiah, our Airbnb gave us time to rest. I don’t get a lot of rest. My primary diagnosis is schizoaffective disorder, and along with all the stigma that comes with that term, I also have terrible insomnia and endless energy when I’m not medication, and loud voices that ruin my sense of peace. I worried greatly our Airbnb host planted cameras in the studio room and when he spoke to us; I often heard attitude and implication in his voice my partner said wasn’t there. I didn’t trust Mr. Airbnb, so I kept our curtains closed.

I did trust one person, and it felt strange that she hadn’t texted me in over 24 hours. We usually spoke every day as we’d done since we were 11 years old. Now we were 25 and trying to figure ourselves out. I found out on Facebook that she’d passed away the day before, while I was smiling on a big rock at Fort Bragg.

At first it was just tears and denial and confusion, and then it was shock. I spoke with my therapist that day via Zoom without a tear, without even mentioning the loss. I didn’t want to ruin our trip, so I sucked down the emotions the best I could, tried to enjoy Vichy Springs, and cried myself dry on the way home.

To process my emotions, I did absolutely nothing. I tried to go to work, I tried to eat, I tried to exercise. And for a while, I did. I went to the memorial/viewing service. I was too anxious to speak with her family, and I wasn’t sure how to approach them, so I didn’t ask much about the funeral services and they didn’t tell me. I missed her being lowered into the ground.

Then I couldn’t eat. I couldn’t sleep. I couldn’t walk straight, it seemed, or breathe without reminding myself to take a breath. My panic attacks came back. They were triggered by loud noises, cars driving past, bright sunlight, hot weather, cold weather, hot showers, cold showers and finally, voices. In my head, I would hear them share their own fears: if I walked alone, I’d have a heart attack. If I rode my bike, my heart would explode. They wanted to protect me, if anything, and so they put parameters on what I could eat: nothing with heavy carbs, no fat, no sugar, including juices. Soon I wasn’t allowed to stand without the threat of their cacophonous judgment. I couldn’t drive because I’d be trapped either in an accident or lost on the road. I couldn’t go to the bathroom without the threat of dying, and so I stayed in bed, shaking, crying, confused.

I stopped working. I took three months off work to try and get back on medication. While doctors struggled with listening to my needs, I struggled with trying to stay alive. I felt suicidal for the first time in many years, and I couldn’t find myself to talk about my grief. Even if someone asked me about it, I couldn’t quite put the pain into words, and I simmered in the loss, the voices, the delusions.

Three months passed and I couldn’t eat without coughing everything back up. I worried things were in my food, poisons, drugs, that were causing my panic attacks and ruining my heart muscle. I thought I had a resulting arrhythmia that would kill me in my sleep, so I didn’t sleep, and the cycle continued. I had to leave my job of five years as a peer worker and get on social security disability. Then, I took myself to the hospital.

In the hospital I stayed to myself as usual, watched some television, participated in groups, and lost more weight. I thought they decided to weigh everyone because they thought I had an eating disorder and wanted to force-feed me. I nibbled only on carrots, broccoli, and some egg in the morning, after all. Those were safe foods, according to my voices, so I ordered the same meal every morning, afternoon and evening. I don’t remember feeling my stomach growl.

The funny thing about grief is that it lodges itself in our body. Sometimes it’s in our heart, sometimes our joints, sometimes our heads. For me, it stayed in my head, and I lost a sense of myself, a sense of the space I occupied, a sense of reality, a sense of truth. I didn’t know what mattered, if anything, and I worried none of us had a purpose. Being unable to find words for this pain, it shone itself in delusion, hallucination and panic.

Not only did I learn how fleeting life was, I also learned pain is powerful. And that’s not necessarily a bad thing. Pain reminds us of who we are. It gives us something to feel, even when we think we can’t feel anything. It’s a darkness worth navigating, because in the end we’ve experienced something new, something hefty, something beautiful, a piece life everyone goes through, and that’s a unifying experience. I miss my best friend, but I’m thankful for the lessons I’ve learned and for the memories I have.

I’ve since returned to peer work, a year later. It gives me the sense of purpose I briefly thought didn’t exist, and gives me a chance to be around people who understand me. I get to give back to the community in a way that’s beneficial. I’m writing again, spilling what I couldn’t during that time onto pages for others to read. I’m going to university to finish my bachelor’s in cognitive science. I’m traveling again, driving and keeping a piece of my best friend with me while I do.

Pain hurts. But we’re not defined by what drags us down, we’re defined by how we navigate the darkness and what we learn. A year later I can smile in a picture again. What can you do in a year?