I’ve been feeling angry lately. Not furious, just angry at the ‘voices’, at the people following me around, at anyone who doesn’t live up to my expectations, at how I think I’m being treated (unfairly at times) by my fellow Buddhist friends, at whoever I think is broadcasting my thoughts over the internet, and at everyone else for believing whatever contrived or fabricated lies the mafia have said about me. It seems like quite a bit, but this has been occupying my mind for the past few days and it seems like if I write about what I’m thinking and how I’m feeling, then it might not take up so much space in my head anymore. At least I’m hoping that’s what will happen.
I was hoping to be able to support the elementary school Buddhist group that I belong to with the SGI, but it seems that I am being “quarantined,” and should not place myself unnecessarily in the company of children. Perhaps because of the mafia voices? After a few days of being frustrated, upset and angry, I decided that maybe I should focus less on participating with the SGI and more on my marriage and my writing. After all, if I don’t finish my memoir it won’t get written and this is my goal. I want to be a successful writer, so I must write. I also want a happy, fulfilling marriage with my husband, and if I lose focus and don’t make any effort, I won’t have this either.
I get easily frustrated because I wish the voices would go away forever and leave me alone. There’s no understanding it, and I’m tired of feeling like everything is all my fault. I know without a doubt that I’ve done absolutely nothing wrong, regardless of what other people think. Fortunately, I have my husband John and my pup Savannah. I don’t know what I would do without them. I actually believe that Savannah is smarter than I am although she doesn’t have much to say. John and I are looking forward to my family reunion next week, and I’ve decided to make new “author” business cards to take with me to start my marketing campaign for my memoir.
Since I created this website two years ago, I’ve discovered a few other women who have a similar diagnosis and also have their own blogs. One of these women is Ashely Smith. Ashley Smith has a blog Overcoming Schizophrenia and has also created her own nonprofit organization dedicated to helping other people with mental illness. I invited Ashley to write a guest post for my website to share her experience and tell us how she came up with the name for her organization, Embracing My Mind. Here is Ashley’s story:
After I was diagnosed with schizophrenia in 2007 I was encouraged to pursue my dreams despite living in recovery by my doctor, family and peers. Some of my dreams included going back to college and managing a self-help program for people affected by mental illness.
While taking a Wellness Recovery Action Plan (WRAP) class I was inspired by the facilitator to lead meetings, because they also lived with a mental illness. I imagined conducting classes that educated and empowered peers to live a healthy lifestyle in recovery.
Unknowingly, writing my blog, Overcoming Schizophrenia ignited hope for me becoming a facilitator and helping my peers. The blog gained a good following and became a great network of support for people affected by mental illness. I interacted with readers regularly through my blog and became an expert on living with schizophrenia through my personal experience with the illness. I enjoyed supporting and guiding others so much on my blog that I wanted to also reach out to people in-person.
One day I developed a series of goals and plans for a program to help peers. I remember being so excited about this program that I wanted to create a catchy name for it and I started brainstorming names and keeping a list of them to choose from. First, I started thinking of titles closer to the letter “A” so if I was going to be in the Yellow Pages others would be able to find me faster. However, that night I couldn’t sleep well and then I suddenly thought of an appropriate title: Embrace My Mind. The title reminded me of how I cared for and strived to help my mental health by accepting my mental illness and moving forward in recovery.
Afterwards I ordered a family meeting about my goal for the group I tilted Embrace My Mind. I shared so many ideas and hopes for this group I would start in the near future. However, my mother reminded me that nobody knew “Ashley,” and told me I needed training in order to be taken seriously. I listened and took notes. My mother thought of changing the title from “Embrace My Mind” to “Embracing My Mind,” which I really liked and stuck with it. She also abbreviated the title to “EMM” and I made that the organization’s logo.
Now, I am checking off my “to-do list” that my mother gave me. Today I am trained to help peers. I am Certified Peer Specialist (CPS), which means I have the experience to work closely with people who have a mental illness, and to help them identify their strengths and to assist them in pursuing opportunities in order to improve their wellbeing.
My story has been featured on CNN’s Human Factor with Sanjay Gupta, the Tavis Smiley radio show, and Janssen Pharmaceuticals documentary, Living with Schizophrenia: A Call for Hope and Recovery. Through my work with Embracing My Mind and much support from diverse organizations including NAMI Georgia, I’ve shared my recovery story with hundreds of people to change their perceptions of mental illness and to promote hope for those living with it. I’ve visited diverse programs to share my story, including universities, law enforcement trainings, clinical staff, and shelters to name a few. My hope for EMM is to share hope and to change lives through motivational talks, classes, and self-help meetings.
I’d like to thank Ashley for all the work she has done to help those suffering from mental illness, and we wish her all the best in the future. Thank you Ashley!
I’m definitely making progress! I really feel like I am improving little by little in all areas of my life. I keep making an effort to get away from my old habits of shutting myself off from people and remaining silent. I force myself to talk to other people even if I don’t necessarily want to, and after every conversation, I am always glad that I talked to that person, even if just for a few minutes. To this date, I’ve never regretted initiating a conversation! It doesn’t come naturally to me, and I usually have to take a minute or two to work up the nerve, but after the conversation gets going, I’ve found that I’m able to keep it going. Sometimes the other person does most of the talking, but occasionally, I am the one that has the most to say. I always try to make a point of practicing my social skills – at the grocery store, at the gym, at my Buddhist meetings, on the phone with my family, with my husband, and with my friends. Eventually I’ll become an expert!
I still hear the ‘voices’ trailing after me, sometimes whispering, sometimes yelling. I still chant to defeat these devilish functions in my life so that they will leave. I believe there is a reason they are still here although I’m not sure exactly what the reason is. This is how it works sometimes in Buddhism. Nothing is coincidence and everything happens for a reason, even if we don’t know at the time what the reason is. These ‘voices’, these horrific people traipsing around after me seem stuck in some sort of demented, insane rut that they are either incapable or unwilling to get themselves out of. There isn’t any logical or rational explanation. I’ve been driving myself crazy since 2002 trying to figure it out – to no avail.
My decision has been to look at this experience from a Buddhist perspective. From the perspective of faith, there is value and there is meaning in something that might never be truly understood. This is another reason why I chose to write about my experience as a memoir. My memoir will be something meaningful that came about as a consequence of this incredible experience. In this manner, my memoir will be a source of inspiration and encouragement for others.
It was a bright, sunny afternoon when I decided to accompany my sister-in-law to one of the local NAMI In Our Own Voice presentations at the self-help center near where we lived. I was impressed by the courage of the two women who spoke. They shared the ups and downs of their lifelong struggle with mental illness. I couldn’t even begin to imagine myself standing up in front of a small group of people and sharing what I had been through with a diagnosis of depression and schizophrenia. Now, almost two years later, I am sharing my struggle with my mental health and the incredible experience I’ve had over the past twelve years.
I read Susan Berk’s story in the Summer 2013 issue of NAMI Voice. She writes: No one could experience or see, or hear, what I was seeing, hearing, and feeling. This is exactly how I felt. How could I possibly help other people, especially those closest to me, understand what I went through? Everything I felt – the sorrow, the fear, the indecision, the turmoil, and the constant struggle with the disbelief I had in my own diagnosis – I wasn’t able to share this with anyone. This is often how I still feel – that no one knows or truly understands my experience. How could anyone else be capable of understanding my story if I don’t do the best I can to share what happened? I believe that now is the best time to share my life with other people. All I have are my memories, but my memory still serves me well. After one suicide attempt, three hospitalizations, a diagnosis of schizophrenia, numerous psychiatrist visits, countless therapy sessions, and a broad array of useless medications, I’ve finally concluded that my experience lies less in the feared and stigmatized arena of the mentally ill, and more in the ray of sunlight streaming in through the living room window.
I built a silver lining when all around me were black skies and ominous clouds. I built the silver lining big and strong so I could take my life back from the evil that had stolen it from me. I lived in fear until I decided that was no way to live. Now I refuse to be afraid. I’ve turned the black skies blue and the dark, ominous clouds white and fluffy. My silver lining is no longer merely a thin, shimmery mirage – it now encompasses the entire sky and fills my life with happiness.
Needless to say, it took incredible effort and I didn’t accomplish this on my own, even though I often felt helpless, alone and afraid. My wonderful husband and loving family were always by my side to support me. My Buddhist teachings and my fellow Buddhists provided me with life changing encouragement and the iron will to never give up on myself. I am determined to do everything in my power to encourage other people struggling with their own fears, terrors, sorrows, and turmoil. Never, ever give up.
Finally! I’ve published my Kindle “mini” ebook, The Voices Never Stopped on Amazon. Please feel free to download the Kindle ebook for $1.99 or preview a sample chapter for free. Kindle has a free app available to use on other devices if you don’t have a Kindle reader. The Voices Never Stopped is an introduction to my full-length memoir Never Give Up: Buddhism, Family & Schizoaffective Disorder that I plan to finish over the next six months. This four-chapter ebook covers my introduction to Buddhism as a 17 year-old high school student, my experience with depression in college, and the early beginnings of the delusion, fear and paranoia that ultimately led to a diagnosis of schizophrenia in my early 30’s. The complete memoir tells the story of how I gained the courage to challenge my personal weaknesses and fight for justice against the ultimate evil in my life – the mafia disguised as symptoms of schizophrenia.
Nearly two years ago in August 2011, I created this blog to chronicle my daily experiences dealing with the symptoms of the mental illness I had been diagnosed with in 2002 – schizoaffective disorder. This diagnosis was based on the symptoms I described to psychiatrists: hearing disembodied voices (auditory hallucinations), paranoia, believing that I was being persecuted by the mafia, and followed around from one place to another. While never entirely convinced that the symptoms I experienced – frequently on a daily basis – were symptoms of a mental illness, I maintained in my daily writings that the “voices” I heard were not real.
“The Voices Never Stopped” describes the circumstances during the time I first started to hear “voices” in my head. In reality, I never believed that the “voices” were merely symptoms of schizophrenia. Instead, I believed (and still believe) that a form of communication which has never been scientifically proven – telepathy – was what allowed me to hear the “voices” of my enemies in my head, and which also allowed my enemies to “hear” my thoughts. These extraordinary and utterly bizarre set of circumstances, combined with the demented insanity of the mafia and everyone else involved created a horrific set of circumstances for me, my husband and my immediate family. Ultimately, the situation devolved into chaos for the people and the surrounding communities who were forced to become involved. It is my desire that my completed memoir will be a source of hope, inspiration and encouragement for all women, and that it will bring a small measure of truth to a nightmare filled with lies.
Thanks for reading,
Jennifer L Myers