I’ve been fighting chronic health conditions for years.
Every day when I didn’t want to get up I knew I couldn’t give in. But it wasn’t always so easy for me. When the voices started I listened to them. When they told me to hide I hid. When they told me to stay in bed I pulled the pillow back over my head. When they told me that there was a higher power, unnamed though it was, that whispered when the wind blew, I prayed to the wind. When they told me I was a piece of shit I believed them. When they told me my medicine was poison I dumped them down the toilet. I ate when they said I could and didn’t eat when they wouldn’t let me. I counted the patterns in the colors of the cars that drove by me.
When they suggested I kill myself I gave it my best shot.
Now I’m glad I’m here, alive, breathing, thinking, writing and creating. I’m glad to see the sunrise and the wind doesn’t whisper like it used to.
I used to have visual hallucinations. More real than you in front of me. More real because that’s what my brain told me. So real that I felt their breath sometimes, felt their fingers on the back of my neck, saw their eyes move as they watched me. You can’t know what it’s like to hallucinate until you have.
My last visual hallucination was of an alien set upon reading my mind by sticking his fingers in my brain. That was three years ago. My brain’s last attempt at lying to my eyes. Though sometimes it still plays tricks and I see red cats out of the corner of my eye.
But the voices, they never stopped. They’ve been a constant part of my life for about five years now. It’s never quiet. There is never an instant of silence. It sounds like a beehive inside my head. Like a congested subway. Like a too full elevator. It sounds like panic and sadness and mania and anger. Some I can understand and some I can’t. Some sound like a radio in the other room. Some voices sound like voices sound. Some sound like dull hum of white noise. Some come from outside my head and make me turn around, scan the landscape or the crowd. There’s never a source, at least not one other than my own head.
Not to be confused with, “It’s all in your head.” One thing I’ve learned is to never let anyone get away with saying that. As if your brain isn’t part of your body. As if they don’t function as a whole. As if they don’t work together to create absolutely every experience you’ve ever had, every feeling you’ve never felt, every movement you’ve never made, any sound you’ve ever heard, every taste you ever tasted. You cannot have one without the other. The brain and body exist together, one thing that has one goal. When you are sad it’s the whole body that is sad, and when you cry it’s the whole body that cries. It’s the whole body that becomes tired. It’s the whole body which achieves happiness. It’s the whole body which becomes sick. You cannot have the oceans without the moon, or day without night, or spring without winter.
It’s with my entirety that I have Schizoaffective Disorder, it’s my entirety with which I fight. It’s my entirety with which I breathe. This how all things exist. With their entirety.
I’ve learned that my hallucinations are part of me. It’s who I am. Illness is a part of me. But life is a part of me too. Happiness is a part of me. And my body and my brain, they are me.
“It’s not all in my head.”
“It’s all of me.”
You cannot fight a war against yourself. Instead, you’ve got to learn to live with yourself. You’ve got to learn to be gentle with yourself. To let yourself breathe and sleep and wake and you’ve got to move and experience. But that’s all. If you can’t bare anything else today, just exist. Exist from where you are. Life can’t ask anything more from you.
Just exist and tomorrow try and exist a little bit more.
Chronic illness, mental illness, an illness which endures is indescribable. It’s made up of pain which cannot be fully understood without actually experiencing it. People with illnesses and injuries, people like myself, aren’t placated into inaction. It’s not as if we don’t strive for the same things you do. It’s not as if we don’t want to excel. It’s that, to no fault of our own, one day we were thrust into a world inept to meet our challenges. This world wasn’t designed for us. The dreams we once had are dashed when we are told what we won’t ever be able to do again.
After my diagnosis of Schizophrenia, it was a death sentence. I’d never do anything worthwhile for the rest of my life. Called ‘profoundly disabled’. It was suggested that I live in a group home until I might end up in the hospital for a long-term stay. But almost four years later I’ve bought my own house and work part-time. I’m a student about to embark on a four-year program to a masters degree. I’m a published author and advocate for other people with psychotic disorders.
I’ve come so much further than any doctor would’ve dare predict. I am not afraid and in fact, I feel powerful. Like I have power over myself and a mind which doesn’t have my best interest at heart. Battles waged against ourselves are often the scariest. And certainly, they are the most difficult. But, when we face ourselves we experience a transformative journey. One which spurs us onward to wellness. That journey wasn’t easy for me and at times I lost myself. Those closest to me, those who were with me at my worst, know that at times I came close to losing the light. But I’m here now and ready to help those who find themselves on the edge like I once did. People with Schizophrenia are told there is no recovery. But I beg to differ. Hard work, harder work than you’ve ever done before, determination, and support dictates your own journey. Everybody’s recovery may look different in the end. But what’s most important is that you didn’t give up. Even when your symptoms were at their worst. And that you pushed yourself as hard as you possibly could.
The message here isn’t just, “don’t give up!” It’s, “recovery is possible, don’t lose hope.”
Am I scared to return to school with Schizophrenia and Bipolar Disorder? I’d like to say no. I’d like to say I’m not terrified. For me, my first college experience was populated by hospitalizations. And steeped in constant instability. Which is why I left. I needed to get better and I wasn’t going to if I stayed in school. My expectations were set too high and with every failure, I sank lower. There was a period, close to the end of my time at my school, that I was missing weeks of classes at a time. It got so bad in fact that the school actually had a meeting, or intervention, to discuss my health. I was present and actually shaking under the scrutiny.
Understandably I had been rotting away in my dorm room. I had not been keeping clean, not attending class, and not feeding myself. Holding me hostage was an undiagnosed case of Bipolar and Schizoaffective Disorder. Along with a rare case of Conversion Disorder that left me unable to walk. So college ended for me in a hospitalization. Then a five-hour long evaluation. And finally the long-awaited diagnosis of one of the more serious mental illnesses: Schizoaffective Disorder. The unholy union of Bipolar One and Schizophrenia.
My doctor put me on a max dose of Seroquel, an antipsychotic. And a heavy dose of antidepressant. Followed by some other medications. I took the time to recover physically. And then with the help of my still partner, we got an apartment. I went for another try of school but in the end, we left the area and embarked on the hardest year of our lives. Myself recovering from Schizoaffective Disorder and him battling his own depressive disorder. Jobs were very hard to come by and we lived off seven-hundred and thirty-five dollars a month. Each of us had our own sleepless nights.
But in the end, we’ve come out on top. We’ve bought a house, a car, and he is approaching a career. So, I’ve decided to go back to school. In the wake of hardship, I’ve grown hardy. Understanding that I am able to fight in even the hardest of situations. A flower unwilling to wilt even in frost. So what am I doing to protect myself as I prepare myself my return in the fall?
First, I am taking the time to begin making lists now. Deciding what it is that I will need to manage my health conditions on campus. Things like medication organizers, and medical id bracelets. Apps which help me to manage multiple aspects of illness. Notebooks which aid in organization and note-taking to help with my cognitive symptoms. A good planner. And a backpack that won’t increase my chronic back pain.
Over the summer I plan on studying my schedule and learning it ahead of time. I will be notifying my professors and the school of my mental and physical health conditions. It’s better they know ahead of time even if it never makes a difference. After my experiences, and being aware of the stigma that surrounds Schizophrenia, I have decided to be open about it. That is the best policy (at least for me). Schizophrenia ISN’T the death sentence it was once believed to be.
With proper management and support, Schizophrenics can recover. We can return to functioning in our personal lives. And functioning in the community. Of course, Schizophrenia is a spectrum much like Autism is a spectrum. Even if Schizoaffective Disorder is on the more serious end of both the Bipolar Disorder and Schizophrenia spectrum. With energy and time, recovery is achievable. Even if Schizoaffective Disorder is life-long, it is still a life worth living.
Another important aspect of my return to school is that it’s a new school altogether. No reminders of my darkest journey with every step. No reminders of my suicide attempts by being on campus alone. I’ll never have to return to the emergency room that traumatized me. By starting on a new campus at a new school it’s a new beginning. And that’s important. It may be one of the single most important aspects for me.
So, by knowing what I need ahead of time. By preparing for classes with enough time. And by notifying my new school of my disabilities I am taking the stress out of a new experience. By being honest and open I am creating a positive relationship with this experience. I am encouraging the continuation of my recovery. I’m scared to return to school and to academic life. There is some doubt but in the shadow of hard work and treatment and support. I’m not afraid to say that I am disabled. I am not afraid to say that I am a Schizophrenic. And I am not afraid to say that I’m in recovery.
The only thing that I am afraid to say is that I gave up.