I have schizoaffective disorder, a cousin of schizophrenia where my symptoms of delusions and hallucinations manifest for me in times of anxiety or depression. My husband James was aware of this fact when we started our relationship, but my condition didn’t fully manifest for him until his first meeting with my therapist.
James sat down with her as a problem solver and an artist. When he fixes things, he does so expertly and with philosophical proofs. He wanted a clear schematic for what this condition meant for me, for him, for us. But she couldn’t give him a a framework on how this all worked. He left with no timeline for the progression of my illness. What he did learn was how I handled myself well, and was an active participant in my care — aware of my symptoms and quick to act when I needed help. I was experienced at the inexplicable. All he could do was remain a supportive partner as things progressed, and became harder, more troublesome and episodic. He had to accept that there would never be a true exorcism, only a slow and cautious approach to my decline.
We met in college, two punks into comic books and Sonic Youth. Our friendship moved into a courtship that weaved through apartments in our adult life to his proposal at the art museum. Things were easier then. I took one pill to quiet the voices, hallucinations and delusional thoughts, and we lived without incident. After five years, we got engaged, and I was filled with a fairy tale vision of our future, one where nothing went wrong, and the status quo continued unhindered. He loved me, I loved him and we would live happily ever after.
That did not last. A year later, neck-deep in wedding planning, James had his bachelor party, a real cause for recklessness. It had been planned as an evening of bar-hopping and loud music. The morning after, however, I could not be convinced of this reality. In a quieter state of mind, I would have believed the boys had enough of the bars, and returned home to make drunken attempts at Axis & Allies. Instead, I was filled with delusional thoughts, believing ex-girlfriends were involved, infidelity had occurred and lies were being told. I treated him and his friends with derision, until later that night, under the cold December stars, he took my hands in his and spoke to me with kind words, helping me to separate what was true and what invented.
The next episode occurred when we were house hunting after six years of marriage. We had a great realtor, had only seen beautiful and affordable homes, and we were happy. So why did I spend 15 minutes screaming at James in a blind rage? I don’t remember what the argument was about, or why I had suddenly tossed my usual concerns about noise to the side. He screamed back, matching my volume increase for volume increase, until I realized I’d been bested, and stomped upstairs to the bedroom to fall asleep, exhausted. When I woke up, I’d reset to zero. We said our apologies and made popcorn to watch a movie. He had learned to accept that the moment had passed, accept the apology, and to move quietly back into routine.
When we found our house, we flew into a flurry of paperwork and packing, while still living our day to day lives. James and I were both working full time, exercising, and making meals at home. He went to the gym with a friend, and I walked over two miles a day outdoors. As the stress mounted, I began to have delusions about James’ relationship with his gym partner. In my psychosis, I was fully convinced they were having an affair. I became cold toward him, answering him only with clipped, short sentences. It made the move difficult, even with the help of 15 of our friends. On our new front porch, after two weeks of unpacking, I told him my thoughts, and he held me in his arms, tight and not letting go. He cried and convinced me of the truth: how I was the only one he would ever want.
Over the past 18 years, James has learned to become an expert in me. Not only the me I hope to present to the world — a capable superwoman, able to leap tall buildings in a single bound while brushing my teeth and playing Chopin — but also the more fragile me. The one who has to live by certain rules, who needs things and words to be consistent. He has to be truly human: adaptable, changeable, empathetic and sympathetic. And I struggle to be the same.
We’ve still managed to complete several expectations of successful American couples. We rescued a dog from the shelter. We furnished our home. He became accomplished in his professional field, and has an office with a window at a company he loves. He is an oil painter, with a studio brimming with canvases.
My starlit career path was much less clear, riddled with near hits and misses. I eventually settled on social work at 30, a cosmic effort to help others in order to stave an inevitable decline of my own. It began seven years later when I was working at a nearby hospital. I became dizzy at a patient’s bedside, losing all memory of anything we’d discussed, and grabbed hold of the footboard to stop the floor from swaying like a pendulum. The patient asked, “Are you okay?” I lied. I said I was, because I had to be. He was the one in the bed, tethered to the IV.
My anxiety had reached such a point that it was manifesting as vertigo. When dizzy, symptoms of schizoaffective disorder surfaced: my mind became clouded with incoherent thoughts, my speech became so garbled no one could understand me. I became paranoid about the possibility that anything and everything that would go wrong. All this emerged from a simple patient assessment. After several doctors appointments and months of paperwork, I was declared disabled at 37.
Now, every decision I make is to ensure the unthinkable doesn’t happen. Because what I fear most is that broiling sense of disconnect where nothing makes sense, but everything does. Where every action and reaction has a consequence grounded squarely in fantasy, but where back in reality, it is much more dire.
During a psychotic break, you are a spectator to your own behavior. You watch as your hands do things you know are awful things. You tell your brain to send signals to these hands, your hands, to make them stop. But they won’t, they continue. Your voice is saying things you’re not thinking. You’re walking places you don’t want to go. This happened to me at 20, and it nearly ended my life.
That night I was so alone. My boyfriend was gone, my friends were gone, my roommate too. My only company were the four voices in my head, who were deep in conversation without me. They were discussing the method of my suicide, which would work best? Slitting wrists and drowning had been ruled out, so had any talk of calling my counselor or campus security. Those options came with a chance of survival, we had all seen that in movies. The loudest, bossiest voice decided I would drink the cleaning products in the closet, and it seemed like a reasonable suggestion, so I did.
But death by this method isn’t quick. It is slow and it is patient. When I put on the song they all decided would be a good one to die to, I was still breathing when it ended. I left the room and wandered campus for hours until my arms and legs went numb and my vision tunneled. I realized I was dying, and that was the truth, not a lie my voices told me. I became afraid. I didn’t want to die. I’d found the fading star of sanity, so I grabbed onto it, and did everything I could to live.
A security guard drove me to the psychiatric hospital that night, allowing me to contact only one person. I contacted James. In what I’m sure was a disjointed communication, I told him what had happened and where I was going. I don’t know what I expected by contacting him, but when I woke up the next morning, he was sitting in the chair next to my bed.
That tiny white room, pristine in its safety, had been breached by this great friend coming to offer me some solace, a friend who always helped me feel sane in this insanity that had been building for months, for years. I was overcome with relief — I’d reached out, and he’d come. It was more than I expected, and everything I wanted. He stayed for a long time, the conversation never drifting to why, or how, it remained on safe subjects: jokes, work, cartoons, music. And I fell in love.
Without James, I would be paralyzed. I lean on him for a version of reality, for him to soothe me, to speak to me calmly and tell me how the world really works. This is not control; I have always been furiously independent, but as the years have marched forward, I need more and more to rely on some version of reality. James had always proven himself to be a perfect candidate for this position, as he understands how the world still holds some magic. He believes in ghosts. He tells fairy tales. But he also sees the fear I feel when reality and fantasy become blurred, and stands firm as the truth I tether to in those moments.
Some days, I need no counsel. The day goes by as just another Tuesday, its weather unremarkable, just a point in the conversation, its news events discussed over text messages. We go out to dinner at a restaurant, I order one of my favorites, and the owner comes to our table for some conversation. Other nights we spend at home, joking on the couch about something on television, and then we go to sleep together, each of us holding on to the other. We host Halloween costume parties, where I’m the only one who dresses up. We have family over for holidays. On Saturdays, we gather several friends to play games around our dining room table, all of us loud and obnoxious. Most of the time, it is a typical adult life — only degrees harder, like living at an acute angle.
Other days, I’m reminded how I am not a fully-functioning human being. James serves as my constant comfort during those periods. One night, I was frozen with fear in the kitchen. I could not go into the dining room as the carpet was alive. It was moving with how alive it was. All the little creatures in it, bustling with activity, their entire society unfolding in front of my eyes. And there was the dog, running her laps, killing thousands of them. James held me, as I stood, my face covered against the dog’s carnage. I was shaking, and he whispered to me, he soothed me, protected me until I could come back. Until I could see how the carpet was just a carpet. Until I knew how I needed to call my psychiatrist. He called in late to work the next morning; I was not safe to drive myself anywhere.
As he takes care of me, I also take care of him by taking care of myself. I try to ease his burden, to show that I am capable, strong and human. Recently, we were with five friends at a restaurant. Its decor preserved since the 1950s, with a piano player preserved just the same. We were all being loud and boisterous, we have always been loud and boisterous, and the conversation bounced across the table like ping-pong balls. With all the noise and high energy, I was overwhelmed by meal’s end. My left-ear buzzed like a burnt-out speaker, and I felt a pressure building in my head like a balloon about to burst. When everyone gathered around our television, I was finding it hard to breathe. So I went outside, where it was dark, and only the crickets made noise. I smoked a cigarette. Did some breathing exercises. Hit some acupressure points. And when I came back inside, James smiled at me. He understood I had made things alright on my own.
Independence has always been something I’ve valued both as a woman and a person with a mental illness. For almost two decades, I lived and worked and loved in spite of of schizoaffective disorder. Now it is a constant partner in day to day life, a companion in every decision and activity. This is not something which has faded away as the years have progressed, it has only gained momentum. From my first symptoms as a teenager to my current condition, I have had to learn how to be not only the custodian of my care, but also the first responder, ambulance driver and primary philosopher.
I don’t know what my life will look like in five years, ten years or beyond. Maybe someone will make one pill that works better than the several I take now, and I will improve. Or a therapeutic technique is developed that combats my voices and delusional thoughts head on, banishing them for years. I can’t wait for these What Ifs and Maybes, so I continue to cope, manage and love James. This may make our marriage more difficult to navigate, but we will do it together. I communicate to him, and he watches for telltale signs. He needs my input, as I need his.
The mentally ill are not always a lonely population. Many in the United States are able to marry, albeit late, and the divorce rate is less than that estimated of the entire country. All told, my history with James spans two decades: it spans the Columbine Shooting, the Y2K scare, September 11th, and through all six seasons of The Sopranos. As husband and wife, we’ve seen Obama’s election and re-election, terror at the hands of ISIS, water discovered on Mars and all seven Fast & Furious movies.
There are certain components present in any successful marriage: love, communication, respect, intimacy, trust and support. We hold fast to these values to keep our marriage together. But no matter how much we cling to these values, being my caregiver takes its toll. James now needs help for his well-being; there was a time last fall where his doctors’ visits eclipsed my own. But he’s found his own ways to cope: he visits the gym three times a week, paints in his studio on the other days — creativity and the weight room exorcise his demons.
Sometimes my mind is a war zone, and can’t be left on its own. But he always hears me, and comes to my side. He takes me to dinner or walks the dog with me. Sometimes we sit close together on the couch and watch something we’ve seen 20 times before. This is what marriage is. It isn’t the fairy tale I thought it would be; it isn’t a treasure map. There is no happily ever after, or prize at the end. Happiness is achieved through hard work and tears. It is an atlas of meandering roads and paths that can either keep you working together, or send you astray. It is, above all, listening, watching, hearing and seeing all the good and all the terrible there is in your partner and in yourself.
Some things are non-negotiable, of course, and these differ from relationship to relationship. Every person and every couple is their own universe. My mental illness may have brought me and James closer, but our work never ends. We find our way as the terrain changes. We try not to fear what we don’t understand. We are always preparing for what comes next.
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