Schizophrenia

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    Jason Jepson

    My Stages of Recovery With Schizophrenia

    When I first was diagnosed with schizophrenia, my first response was, “No, not me.” The response was probably due to what I thought mental illness was. I was scared I would be put in a straight jacket. I thought I would be closed off to the world. I finally came to the conclusion a person with schizophrenia must find help, or possibly wind up on the local news. My First Day My sunglasses were still on as I entered the small room. My platoon Sergeant was behind me, and I noticed that the man waiting for us wore a nametag calling him a “Doctor.” I was wearing sunglasses because without them, my disease would spread. That meant, through the channels of extra sensory perception, my reality would take hold, and an individual would be able to speak with another individual without them being present. Suddenly, as the naval doctor was asking me questions, my platoon sergeant yelled. “Take your sunglasses off!” The very thing I couldn’t do. Because I was used to following orders, I slowly took off my sunglasses. So it begins … the doctor will now be able to hear everyone I had made eye contact with for the last couple of months. The doctor sighed. I was confident that the voices had made contact with him. I was given pajamas to wear, sent to a room in the psych ward that I would share with three other people. This was a psych ward. Never in a million years would I have thought I might end up in a place like this. I was scared, but resigned to whatever might happen. My platoon Sergeant had driven me from Fort Irwin, California in the Mojave Desert to Balboa Naval Hospital in San Diego. During the long drive to the hospital, I felt a sense of relief. At my Army base I always had to keep my guard up. I didn’t trust anyone around me there. I had made eye contact with all of my fellow soldiers, and so the voices were influencing them too. Several things I had experienced in the military may have conspired to enable me to have the powers that I had now. I was stationed in Fort Knox during my basic and advance training. One night, we were training on the Calvary scout main weapon the M3A3 Bradley fighting vehicle. There were three of us in one track. I like to think I drove it to the best of my ability. This of course was before my special powers took hold of me. Everything was fine until I was in the back of this vehicle and my seat had a broken seat belt, so I tied the two ends that I did have around me. The driver who was in front seemed to be maniac behind the wheel. He hit a bump and I hit my head on a bar over head. I was knocked out for a second. When I woke up, the trip was over. But the person sitting next to me was crying. I guess he thought I was dead. When I moved, he stopped crying. The second instance was at Fort Irwin. I was in the field during a rotation, and the soldiers in my team were parked in a line. It was getting dark and someone called me over. I went, and the next thing I knew five guys were trying to wrap my body in duct tape. I fought them off by pushing and kicking away anyone trying to tape me up. It took a different soldier (from a different platoon) who was bigger than me and stronger than me to bring me down. Imagine fighting for your life and losing. This was initiation. I was the new guy. They also taped someone else I came in with but not as bad. They didn’t put tape over his mouth like they did me. This experience split my psyche into two realities. There was an everyday reality and a reality that was all mental. The reality I explained. The reality that inspired me to go to mental health so I could figure out what this really was. A part of me thought it was a new step of evolution. I was later Honorably Discharged. At home my behavior was very erratic, so much so that my parents had to call the police. They took me away in handcuffs. It was a hard thing to go through, but now, I am thankful for that experience because I got the treatment I deserve. I finally was on medication. Antipsychotic Tangents It came to this … Voices surrounding me like bumblebees in spring. Women kissing … the love buzz Beating in my chest. Feast your eyes on the loner, And hear the voice of God. Whispers and tantrums, Like bacon sizzling in your brain; Finding rhythm in hallucinations Depicting voices that acting like a searchlight Ceased and dissolved in a single green pill, Creating a lonely apartment. This is my poem about schizophrenia. “It came to this” is bringing the reader up to speed. Voices sometimes seem like bumblebees. Each sting is a voice. When I had made eye contact with a woman, I would often feel a burning in my chest which I thought was the woman falling in love with. The warm sensation was called the love buzz. For those who made eye contact with me, they could see me the “Loner” in their head just like I can see them in my head. I also thought I could hear the voice of God. It was calming and relaxing. The voices were sometime at a whisper, and sometimes they seemed mad. The voices, sharing my brain, can be compared to bacon, always sizzling in the background. Hallucinations in my mind move quickly with rhythm-like boom, boom, boom. Some of the voices can act like a searchlight helping me weigh through my delusions. Stopping or maybe dissolving in a green pill, an antipsychotic. When medication starts to take hold, and the voices and delusions subside, I think the person living with schizophrenia feels lonely. They have depended on them for so long, and chances are the voices make them feel important. Hopefully, they won’t stop taking their medication. How Can I Help My Family and Others Understand My Schizophrenia I am not a mental health professional. I respect that profession so much. I’ve recently skimmed an article about psychiatry. The very first sentence states how hard it is for a person to accept that a loved one has a psychotic disorder. I’ve never spent a long time thinking about my family. How do they carry this weight? I am sure whether or not the mental health consumer has a roof over their head or is taking their medication enters into it. I am sure my parents would want me to be able to communicate how I am feeling, and if I am taking my medication. Also they would want to know that when it gets hectic I need to be left alone just like I need to know that it is alright to want to have a few minutes to myself. My parents would also want to know I am taking care of myself. Your job as a mental health consumer is being able to tell your doctor that you are OK or telling them your symptoms. You also need to stay on your medication. That sentence in the article I read can help with others too. For someone who doesn’t understand what it is like knowing someone with a mental illness, ask the question, “What if your dad, mom, brother, sister, husband or wife had been diagnosed with schizophrenia?” Their world as they knew it would be over. They may not know who to talk to because so many people don’t understand schizophrenia. My mom looked online and tried to find everything she could on the subject. There are different groups a loved one can go to get help or even empathy. If you don’t understand schizophrenia, just do your best to try to understand the family and friends. What are they going through? It is important to know the simple fact that it isn’t anybody’s fault. If I were asked to describe my schizophrenia, I would describe it as this: Schizophrenia, it is fighting off impulses that are wrong. They just pop into your head. You constantly have to fight the unreal. I sometimes go to Arby’s. I go through the drive-thru. Monday there is roast beef, Tuesday there is turkey, Wednesday there is roasted chicken and Thursday there is meat loaf. You also get four sides and muffins. I tell them what I want on any given day, and immediately I think they are spitting on it or doing whatever to my dinner. At the window, I look around to see if I can catch them in the act. Nothing. I pay, get my food and say thank you. Schizophrenia is receiving a delusion, or just a thought, and not reacting because you don’t know if it is true or not. Add stress and that is why I can’t work. That is why I can’t live a “normal” life. What is a “normal” life? You have a rough definition when you have a mental illness. Me, Myself, and I Last night, people were going up and down the stairs of my apartment building, trying to be quiet. I thought they were talking about me. “Jason lives there.” When I go through something like this, it is very hard to think rationally. I get swept up. When I hear voices speaking negatively about me, first I take a deep breath. Then, I catch myself in the moment. Are people really talking about me? If you do this, chances are you will find out things are quiet in and outside your head. Another way to cope is what my therapist told me, check the evidence. My front door has a peep hole. I look through it when I think something is going on. I look through it and you know what, there is no one out there. Just think of this, now if someone was talking about me outside my door wouldn’t they whisper so I couldn’t hear them. When you think strangers are talking about you, you need coping skills. When you have schizophrenia or any type of mental illness, you have to be in tune with yourself. You can be your own therapist or doctor without a psychiatry degree or PhD in psychology. To catch yourself in the moment is to be self-aware. Use your senses, listen, look through the peep hole or window. If you have been taking your medication, then chances are you won’t hear or see anything. For the most part, you have to know this, people mind their own business. They have their own worries and obligations. Chances are they have nothing to do with you. My Stages of Recovery The Stages of Recovery can be seen as a checklist or a way to see how far you have come. A patient and doctor or mental health professional can benefit from using this. I believe most patients go through these stages of recovery. With this tool, it can be seen where recovery began. These stages are subject to change. They don’t have to be in order, but in my opinion, this is just a tool to help after a patient has gone through the work himself or herself. Self-Aware I realized something was off in the Army. I referred myself to mental health. Because I didn’t stay on my medication, I came home with terrible symptoms, voices and delusions. I didn’t understand what was going on. Getting Help My parents called the authorities on me. It is better to come to your own conclusion on your own. I was taken to the hospital, where I decided if I was going to get help, it was going to be here. Staying Stable I found the right medication at the hospital. I decided I wasn’t going to go off my medication. Acceptance During this stage, I accepted myself at a bar. I didn’t feel like being quiet, but I talked to other people. I told other people at the bar that I was disabled veteran and why. I didn’t know why I should be ashamed about my diagnosis. This stage I realized some people may not accept me. I realized I had to test the waters in any public or social situation. I ask myself should I tell this person, if not, they are other things to talk about. Maintaining In this stage, I tried doing everything I was supposed to do. I quit drinking and smoking. I took my medication. I was taking antypsychotic injections. After telling my therapist and doctor about my symptoms, my doctor advised me to take a different 2-week injection instead. I also take an antipsychotic orally. Sometimes we do everything we are supposed to do, yet we have symptoms. We have to maintain. We can’t give up. We have to be aware of our symptoms, and if it doesn’t belong, tell your doctor. Accepting your mental illness or who you are can also be a part of being self-aware. All this while maintaining and doing what you are suppose to do. Published by Schizophrenia Bulletin March 1, 2014

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    Navigating the Schizophrenia Treatment Journey and Planning Ahead

    For adults living with schizophrenia, daily tasks and managing their symptoms each day can be challenging and overwhelming at times. However, having a strong support system and treatment plan in place can help to ease these concerns and make sure individuals stay on track with their treatment plan. One part of feeling prepared may include having a plan in place that can help adults with schizophrenia feel empowered during times when life might otherwise feel out of control. We sat down with Bethany and Tanara, 2 adults who have experience with schizophrenia, to discuss how they found a treatment plan that works for each of them and prepare for life’s unexpected changes. Why do you think it is important to share your experience with others? Bethany: It is vital to advocate for mental health, especially schizophrenia. We [people living with schizophrenia] are often thought of as dangerous and erratic. Through the work of my nonprofit, the CURESZ Foundation, I have met so many unique and talented adults who are thriving despite a schizophrenia diagnosis. We need more community leaders to stand up and share their experiences living withschizophrenia to educate the general public and break down stigma. There should be no shame in having a chronic brain disorder like schizophrenia. It is treatable. Tanara: I believe there are people who are put into positions to help others and that’s what I try to do. When I was diagnosed with schizophrenia around 2011, it was stressful because I didn’t know what was going on. I was lucky enough to have a strong support system consisting of my family and a healthcare provider (HCP) who made sure that I got the help I needed. However, others may not be in the same position as me and have no one to turn to. That’s why I decided to become a recovery coach and a peer support specialist – to help those living with schizophrenia who may not have a strong support system. Living with serious mental illness can be scary, but I try to see the positivity and take it one day at a time, striving to be the best person I can be. The most important thing to remember is that it’s your life, and you need to take control of it as much as you can and make the best of each situation. Can you tell us a bit about your treatment journey? How did you go about finding the right treatment plan for you? Bethany: When I was first diagnosed with schizophrenia in 2007, it was hard to get my symptoms under control. I tried 5 different medications over the next 12 months with very little success. That first year living with schizophrenia was the most difficult year of my life, but together with my doctor, I found a medication that better controlled my symptoms. Within 6 months of this change in my treatment, my parents, my doctor and I were talking about my return to college, and I realized that on the right medication for me, work or school might be possible again. I was able to finish my degree and graduate in 2011. This has been possible because I have committed to following my treatment plan, consisting of medication and supportive therapies. I realize what is at stake, so I make sure that I stay on track. Tanara: When I first started experiencing symptoms, I was not being completely honest with my healthcare provider about what I was experiencing, because I didn’t have any prior knowledge about mental illness, medications, or the resources available. Because of this, I was prescribed a few different medications and still didn’t feel like myself. After I learned more, my doctor and I discussed a new treatment option – a once-monthly injection. With the right treatment plan in place, my symptoms were better controlled and I was able to work, spend more time with family and friends, and return to the things that I love. What I found through my treatment journey is that what works for someone else might not work for you. You have to figure out what works best for you. You also need to talk to your HCP and your support network and be open about what you are experiencing so they can understand you! It can be frustrating to tell your story over and over, but it only helps you in the long run. Your HCPs and treatment team specialize in helping individuals like us and can make a difference in your life, but they can’t help you if they don’t understand what you are going through. Managing your schizophrenia symptoms can be challenging, especially during times of stress or change in your life. Creating a plan during times of wellness can help you and your loved ones take action in a crisis. What plan do you have in place to prepare for challenging times? Bethany: During challenging times, it can be easy to isolate yourself when you need friends and family the most. However, having a strong support network is essential for maintaining good mental health and having support during challenging times. I speak with my parents every day, see them in person once a week, and I connect regularly with friends. I know that if I do ever experience an episode, they will be there to support me and bring me through it. With the right medication, I have enjoyed 12 years maintaining good mental health, and I hope that continues for the rest of my life. My hope is that I will never experience an episode again, but if I do, my plan is to immediately call my doctor to discuss my treatment options and care. Having a doctor who is available and can be a resource to me during difficult circumstances is absolutely important, and I am grateful that I can call my current doctor if I ever do experience signs of a schizophrenia episode. The personal preparedness plan on OnceMonthlyDifference.com includes a contact sheet that you can complete with your loved ones in order to outline who should be contacted if your routine changes or symptoms worsen. Tanara: For me, the most important thing is my life – I have to take control of it, to have plans in place, and seek help when needed. You can’t take anything for granted. Sometimes things stop working or you’re hit with a tragedy so you need to have a support plan in place. I have a plan for challenging times, which includes my grandparents, my significant other, and my coworkers. They understand how I would act if I was experiencing breakthrough symptoms or a relapse, and we have developed a plan about what I would like them to do if this occurs, which includes talking to my doctor, exploring hospitalization, and other treatment options. I’ve reviewed and discussed this plan with my support team so they know how I would want to handle a situation. With this plan in place, I feel like I am in control and being heard. It’s important for me to have a plan in place so that I can keep prospering and growing. What would you tell others who may be considering a change in their treatment plan, such as switching to a daily oral medication or a once-monthly injectable? Tanara: My advice is to be honest with yourself. Like I said, everything doesn’t work for everybody, but exploring all options with your HCP and support network is always worth a shot and can be very rewarding. For me, trying a new medication that I didn’t need to take every day made me feel more in control. Bethany: It’s important to educate yourself about the available treatment options, including their benefits and side effects. When I was exploring potential treatment options, I conducted my own research, and I read memoirs from others living with schizophrenia that convinced me that I could accomplish my goals and get back to things I enjoy with the right treatment plan. My advice would be to never give up and don’t be afraid to explore new medications or treatment plans with your doctor. If your medication is not working very well, there are other options. Talk to your doctor about what you are looking for in your treatment plan and how you can work together to find it. If you or a loved one are an adult living with schizophrenia, ask your doctor if a change in treatment plan could make the difference for you. Learn more and download and complete a personal preparedness plan to prepare for challenging times at www.oncemonthlydifference.com . Every story is unique. If you are an adult living with schizophrenia, talk to your doctor to figure out a treatment plan that’s right for you. Bethany has partnered with Janssen Pharmaceuticals, Inc., to share her story. She has been paid an honorarium for her time. Tanara is a volunteer with the SHARE Network, a Janssen Pharmaceuticals, Inc., program made up of people who are dedicated to inspiring others through their personal health journeys and stories of caring. She has been paid an honorarium for her time.

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    What do you wish others knew about your life with schizophrenia?

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    Rebecca Chamaa

    What the Media Doesn't Know About My Schizophrenia

    My name is Rebecca. I have paranoid schizophrenia. I am married. I have a home. And I have never been a danger to anyone but myself. But the opinion that gets played out over and over in the media is that people with schizophrenia are dangerous. We are portrayed as crazed killers. The popular show “Criminal Minds” deals with the topic of people with schizophrenia, often casting them as murderers. And this isn’t uncommon. A 2012 study found in 41 movies released between 1990 and 2010 that featured a character who had schizophrenia, “ most characters (with schizophrenia) engaged in dangerous or violent behaviors toward themselves or others, and nearly a third engaged in homicidal behavior. ” It gets so tiring. It is true that many people with schizophrenia are in jail, but that has to do more with a failed system of treatment than the fact that people with schizophrenia are dangerous. I lived in the closet with the truth about my diagnosis for over 20 years. My husband and I created a bubble of isolation for ourselves that protected me from the harsh and cruel judgement of the people around us. I told my secret publicly less than four months ago, and there have been many supportive family and friends. But the people I have cherished the most through this process were the ones who dared to work up the courage to ask me, “What is it like to have schizophrenia?” More than the doctors, more than the media and more than the writers in Hollywood, I’m an expert. I live with the symptoms of a severe mental illness every day. Despite what it looks like in the media, the risk of someone with schizophrenia being violent is small. The risk might go up if it’s paired with substance abuse problems. But sensationalism sells and people use it to benefit their ratings, while those of us who are hurt by the lack of hard facts go deeper and deeper into our own worlds, avoiding the terrible things society believes and says about us. Next time you see or hear the media try to make all people with schizophrenia look like wild and dangerous criminals, think about the woman you read about named Rebecca. She could be shopping for her groceries next to you in the supermarket. You’d never know about her diagnosis, but she trusted you enough to tell you. Try to handle that trust carefully. It’s not every day people give us the benefit of the doubt.

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    Cosmo Graham

    In the Mind of Someone With Auditory Hallucinations

    It was not funny. My heart was pounding in rage like a hammer beating in a nail. I was being probed by about 300 voices in my head a minute, attacking me, calling me out on my sad, sick life like these forces had an acute knowledge of my experiences and inner torment. I had no line of defense, although I attempted in my head to fight back by coarsely swearing and barking back feeble insults. I called them out on what was happening and how it was unjust. A sinister woman’s voice told me that before I had become like this, I had been spied on night and day, that I had been awoken to something, and so now I was aware of these duplicates of personalities. They told me that when I had been “unaware” they had watched my pathetic zombie state as I drank day after day, and had witnessed the sordid personal affairs that I had undergone unbeknown to their sadistic laughing eyes. They found pleasure in my dreamlike state, using a simulation of my actions to abuse me, their imaginations and clicked on young minds using my sleeping body in numerous translations of sick torment, demonizing me to expel any guilt that they might have the human intellect and decency to feel. I would feel dirty and clogged and so would drink, but there was always that feeling that I was a joke to these higher minded people. I would especially feel that way when I would take a walk to town and would blush as the energy and laughter drove me up the wall and into the ground, hit me like humiliating waves and filled my ego with a sick taint that made me feel useless. These times were sickening and unreal, at first for eight days I could not sleep a wink as the voices and experiences were too hectic and intense. They would tell me I was nothing as I tried to achieve some sort of status, and always reminded me of their superiority, for most of it I was seething with rage, wanted to lash out. I desperately needed affection but could not find it in my head. It was easy to muse on death and life, there was a feeling in the air that I was hated, I couldn’t grasp the reason, I deathly wanted my own back and do to this day. The voices demand superiority, as part of my world, as part of my train of thought, there is one speaking to me now as I am writing, several chides, several rebukes, I feel constantly judged, in a ludicrous inhumane way, which the auditory characters I live with excuse by shrouding themselves in their habit of creating different societies, as part of this relation to others, different people, different minds giving off conversation and evoking feelings of connectedness, in complete indifference to logic and fact. I am completely alone, yet as part of my thinking I interact with a number of hallucinations, women mostly and men, who I am never quite close enough to to feel relaxed. There is always an action I haven’t navigated correctly to excuse the coldness of the darkly niche ensemble, yet alas I am not left out enough for the full impact of my individuality to be felt and benefitted from. If you can relate to Cosmo, let him know in the comments below.

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