I’m Just Living My Life with Schizoaffective Disorder
Most people want me dead or locked up because of the illness I was born with. It’s a weight I’ve had to bear all my life.
content notes: substance abuse, suicide
I have a chronic mental illness. Schizoaffective Disorder. That’s Schizophrenia and Bipolar combined. Also anxiety and PTSD. The symptoms rotate unpredictably. The multiple medications are a way of life. The opinions people hold about Schizoaffective people, I see spread out in front of me on Twitter this morning. A thread beginning when a Schizoid PhD student asks for general opinions from normal people. They tweet replies that such a person is hopelessly, beyond the pale crazy. Bad. Wrong. A lost cause. Either homeless. Or institutionalized. Definitely outside of society. I pipe up in a tweet that I am just living my life with the illness. Trying to use the material for art. But I’ve had help I won’t deny.
Living with the knowledge that most people want me dead or locked up? Because of the illness I was born with? Is a weight I’ve had to bear all my life. The stigma is so heavy that although I’m out in my writing I no longer socialize. Or venture outside. In Nevada, guns, knives and eugenics cowboys are commonplace. I’m not suicidal. I didn’t come here to make friends.
I feel a hyped up alertness. Not just from the pot of coffee on the pale green bedside table. I’ve been steadily drinking it since I woke up at two am. This is hypomania. I feel creative. Know I run the risk of going full manic. Spending money online I don’t have. I cast about for a better outlet. I see a tweet about, “would people be interested in chronic illness stories on Medium”. Bingo. That’s my #ownvoices specialty. I eagerly ping the editor. My day becomes spoken for before the sun comes up.
I can no longer work a normal job. Live with people. Maintain real life relationships. Cook. Drive. Or even use a microwave. The only stable through line is idiot savant literary craft. How does something like this happen, you ask?
I remember writing poems in a little notebook as a teen. As well as the names of each band I saw. The names of each person I slept with. Until the numbers became unmanageable. When the Internet came around when I was in my late twenties. It signified a change of mediums and wider distribution. Typing short stories and poems in an old DOS computer. Cutting and pasting them into elaborate collages. I got involved with zines. Wanted to be read at fifteen. Still do.
In college, I read poems and showed paintings in coffeeshops and clubs. When I wasn’t suffering the side effects of various nineties psych meds. Spent enough time onstage in various ill begotten punk bands to learn to perform. Although I “played” several instruments and “sang”? The takeaway was learned unashamed visibility. Despite multiple stigmatized identities. Yelling my words at an audience. Receiving validation. The delusion of worth. Shamelessness of mania. Made me a confident performer.
Manic promiscuity. Alcoholism. Mild, then accelerating poly-substance use all played by the Schizoaffective playlist. Back when I legitimately worked for a living in Portland and San Francisco. Fun as a twenty something was definitively self-destructive. Writing is what got me out of that life. I still view writing the way I did before my MFA. A pleasure. An addiction. A need to have others feel as I feel. The chronic illnesses I live with make that a more unusual experience. I’m thankful in 2019 there is finally editorial interest in Disabled lives.
In San Francisco in 2004, I would cop a gram of cocaine for myself. Stay in all night writing my first novel. On weeknights. Snort the last white grains at dawn. Put on a suit and neutral makeup. Tromp to the BART in stiletto boots. Answer the phone in a random office for eight hours. I don’t have that kind of stamina any longer. Don’t have the professional filter anymore. Or any of the organizational abilities that made secretarial work possible. The only one I’ve retained is how to make coffee anywhere.
I didn’t know how serious my illnesses were back then. I thought Bipolar Disorder with Psychotic symptoms as I was first diagnosed was not that big of a deal. I didn’t realized it would destroy and reshape my entire life. I didn’t know that was the reason I was fired from every job I ever had. I thought I was just a lazy bad person who didn’t try hard enough. I didn’t know I had any other options than to get yet another job to survive. That’s how I worked Disabled for ten years. Oil paint factory. Coffee shops. Antique mall. Office temp. Receptionist at a fancy accounting firm. Homeless shelter development assistant, when 9/11 went down.
Ever since that CalArts MFA drove me over the edge, I’ve received SSDI benefits. I haven’t worked in ten years. My last job was as a teaching assistant during graduate school. It was my first time teaching. I was very bad at it.
In 2006, my grad school classmates informed me that my Schizoaffective Disorder was so serious that I shouldn’t even be in the classroom with them. Certainly not plunking down the four hundred page sex and drugs bildungsroman I wrote in San Francisco for them to edit. Two books came out rapidly after graduation in European small presses. London. Sweden. Although I never saw a cent, I will be grateful for life.
Amazon has my novel, Jet Set Desolate on print on demand. The small press “Future Fiction London” folded, as so many do. No hard feelings. Online I find my book is being sold on German Amazon for $100 a copy. I had nothing to do with that. I’m just glad it’s still in print. Thrilled for international reach.
The Swedish poetry collaboration, Lorazepam and the Valley of Skin, was put out by an art school friend on a shoestring in 2009. Right before she left for a Masters in Curatorial Studies in Stockholm. She visits me periodically here in the US. Interviews me or publishes me in European projects she’s editing. I check my email lately for her interview questions. Cunning Like Doves: Conversations with Women in the Art World, will be out in 2020 due to a Swedish arts grant. I’m supposed to be in it. This is what I live for now. Fame. My heart is empty. I’ve lost two wives and grief is a constant
In the twenty teens, Los Angeles was rising as the capital of the art world. I threw myself into that life. In 2011 I entered into a domestic partnership with a young lesbian writer. Gay marriage was still illegal due to Proposition 8. Together we ran a reading series in Los Angeles. She committed suicide in 2012. A trauma I will never get over. I went to detox and rehab. Got sober. Tried to build a life yet again. Until eviction from my Hollywood apartment in 2016. When I had no one and nothing in Los Angeles left worth staying for.
Now I live rent-free. In a brick house in Reno, Nevada that my great-uncle built. Like the Medicis, you could say my parents are patrons of the arts. I only know I’m grateful. Try to fulfill my end of things. By doing what I’ve been trained to do. Not asking for more. Living in a single family house all by myself. With art and antiques. Creepy dolls. Three cats. On SSDI income only. With time to create when I’m not managing symptoms. Feels like heaven.
As if the SSDI is the NEA grant I could never get. I feel a sense of duty to contribute what I can artistically. Writing, painting and performing are my Bipolar Disorder’s compulsions. It is harm reduction to direct that mania towards creative pursuits, instead of my previous more illicit past times.
I never know if anything I believe is true or just a delusion. The Schizophrenic delusions will periodically make me intently convinced of something inherently not true. It’s been dangerous, alienating and humiliating. Grandiose and delusional self image is another Schizoaffective symptom. Especially active as I’m currently hypomanic. This time the Silicon Valley overlords confirmed. I’m verified on Google. “Profession: writer, artist.” It’s not a delusion anymore.
Fun? Sex? A social life? Other people are no longer important to me. Writing comes first. I try to use my power for good. Giving away my creative work on free platforms. Not pursuing or taking paying writing job because real writers, not SSDI hobbyists, need the money more. Not to say I couldn’t use some cash, but losing my Disability benefits is a bigger loss. I’ve done the math. I can’t afford a divorce from my substance abusing second wife. That cure-all ketamine treatment. Or a trip to the dentist for a blacked out tooth.
The parade of medications Medicare provides keeps me docile well enough. I’m surviving. Even after my second wife stole two months of my antipsychotics when I kicked her out. I never counted the Xanax, but wouldn’t be surprised if she skimmed. She ruined my financial security. But most Disabled people never even get that, so I won’t complain. I’m used to rationing food amid doilies and diamonds.
It’s been a few days since I’ve left my bed. My hair is long and grey blue. I can smell my unwashed stench. The Grey Gardens way. A diseased parasite in a castle of blood money.
No End In Sight is a place to read and share stories about chronic illness in our own voices. You can also listen to these types of stories on the No End In Sight Podcast.
Do you want to share your own story about chronic illness? Here’s everything you need to know.
Previously on No End In Sight — How My Diet Almost Killed Me and Put Me in a Psych Ward (Twice)
