In public, at events we are not able to make excuses well enough to skip (and spend much of the time in the bathroom in order to escape the crowd), we are often asked, “What do you do?” Are we defined by our careers or lack thereof? I know from experience how awkward it can be to end up on the downside of this floundering question. When I was unemployed for nightmarish reasons the public couldn’t dream of, I was embarrassed by this inquiry. I found it hard to hide, and even harder to come up with an answer on the spot. I did not realize at the time that I had nothing to be ashamed of. Once upon a time, I asked my dad how I could handle this question. He suggested telling others that I was a “Respirator.” Who would question that response even if they knew what it meant? Dad meant to employ me with a career as a “Breather.”
Breathing is a job in itself. Many people inhale and exhale on autopilot. It doesn’t come so easily for us all. When I forget to breathe during an episode of high stress, a panic attack ensues. Panic attacks are quite frequent in my life. It helps to be a “Respirator.”
I believe that everyone experiences some sort of pain in their lives. Some people suffer physical trauma, while others struggle on the inside. Often, this pain follows us for the rest of our lives. Sometimes we cannot escape. While I was in the many hospitals I inhabited in 2013, I refused to take my medication. This further encouraged my illness to take over my mind. When I refused the meds, I received painful shots in sensitive areas. Pain memories are a reality in my life. I can feel pain in those sensitive injection sites even today, eight years later. My body remembers, even when my mind is cloudy. Pain is not something easily forgotten. I am still healing from the abuse I dealt with as well. Not only do I experience this physical pain; I also remember the violation of being held down until I couldn’t breathe. Overweight, gleeful men pinned me down and forced me to receive these shots. I don’t feel all of this pain in the forefront of my mind at all times, but I cannot forget. Last night, I had this sensation. The physical pain brings forth the painful memories, so distanced from the present. Eight years may seem like many years to some people, but I can close my eyes and be there. When I walk through a hospital, I am triggered by the smell I am all too familiar with now. I cannot eat huge bowls of oatmeal with butter and brown sugar without remembering how close I came to starving to death. I can no longer drink apple juice without recalling the memories of my first depression. All of this is the pain of trauma I will never escape. But I move on, and the past grows smaller every day, as I let the light in.
The stigma attached to psychiatric disorders reminds me of other assumptions we make in our daily lives because we do not know or understand the truth. We believe the speculations passed down to us for generations. We are told that “Cops love coffee and donuts.” Who doesn’t? But what about the diabetic cops? Or the cops trying to avoid sugar for other reasons? The cops who direly need to stay away from caffeine for health concerns? There are always exceptions. The same goes for mental illness. Everyone struggles with the donuts they are dealt. Many people experience trauma that sticks with them throughout their whole lives. Some experience stomach aches full of dread for indiscernible reasons.
Mental illness comes in different forms, as various as donut flavors. My flavor is Schizoaffective Disorder. It is a combination of Schizophrenia and Bipolar I Disorder, a chocolate covered donut with cream filling. I would not change that part of my being, much like I would not change my donut preference. There is nothing wrong with that flavor or any other, just a difference in taste. Figuratively, this donut burden is something I carry with me every day.
I have accepted my truth, with the hope that others will no longer be afraid to step out of the shadows with their donuts. I find it more aesthetically pleasing to speak about mental illness in a soft, positive and metaphorical way. I often personify my mental illness and have named him “Berman.” Today, he represents donuts of every flavor. I no longer see my “differences” as a curse, but as a blessing. I strive to distance others from their “curse,” and to see the upside. Many people have mental illness. Many people have a favorite donut flavor, which describes their situation. What’s your flavor?
When I was little, my dream job was to be an author and illustrator. I wrote short stories as a kid, and published a few poems in high school. Now, I am a published author and illustrator and have accomplished my childhood aspirations. As an adolescent I was shy, sensitive, quiet, and mostly private with my emotions. Behind closed doors I was often irritable, angry and depressed, until it was time to sleep and the tears rolled down my face. I rarely smiled in public, but my family saw me for who I truly was and I am so grateful for each member. I lived and laughed and adventured. I didn’t know why I was crying, or where the stomach aches and dread came from. I was more often a happy kid with amazing parents and wonderful sisters who always had my back. So where did these tears originate?
I suppose that because I speak freely; I jump from one thought train to the next; and I never run out of words; I am able to write down the details that form instantly with the tap of my fingers on the keys. I used to write it all down on college ruled paper, not the typed words readily produced by a computer and printer. There was not a computer at my disposal. Write it down. That is what I used to do. Then there was the typewriter. The unpublished children’s books I wrote and illustrated as a child were pieced together and illustrated with my sister’s help. I would write it all down, page by page as the ideas flowed effortlessly from my mind onto the paper. My little sister, Kimberly, would sit with me in my room and we would read the stories I wrote. She has always been thoughtful, generous and kind. She has one of the most active, vivid imaginations I have seen in my life. She helped with creative suggestions for the illustrations. Kimberly became a reader, writer, artist, and high school English teacher when she grew up. I was not surprised. I suspect she is correcting my grammar and punctuation right now.
Writing and illustrating have always been so important to me. Art is my world. It is easier to understand a puzzle or stumbling block when I create. Most of the time I don’t know what I am feeling until I read it in my own handwriting. Whatever I have going on inside sprouts up and grows on a page in prose. It is therapeutic. Writing those stories helped strengthen the bond between me and my sister, and ultimately became a huge part of who I am today.
Thank you, Kimberly. I am forever grateful for the part you have played in my life.
I hope that reading my words is helpful to others. Writing it all down is the best advice I can offer. I have changed so much since that day in elementary school when I dressed up as an author and illustrator for “Career Day.” I am no longer the shy, quiet wallflower of my past. Now I speak every thought as it appears in my mind. Writing it all down helps me focus on what I really want to say. I no longer use my typewriter and have upgraded to a laptop, but my message is the same. Love your sisters unconditionally; don’t take anyone or anything for granted; never forget who you were, are, and will be. Write it down, and remember.
When I was a small child, I had a vivid imagination and the tools to play alone. I have an excellent long-term memory, though my short-term is struggling. I loved to play outside, camp, hike and participate in other family activities, but even as a kid I needed my space. Whenever I felt overwhelmed, stressed, or wanted to be alone, I built a space for myself to feel comfortable and safe. The roots of an old tree were a perfect place to settle in and rest or play by myself. Behind the couch in the living room. Inside a tent or make-shift fort. I slept in a bunkbed with my sister, and I was on the top bunk. I shrouded the space with sheets hanging from the ceiling. Now, my nest is a room in our house where I can go to be alone or to spend time with material possessions that bring me joy, and remind me of childhood happiness. This is my retreat. Sometimes, I lie on the bed in that room and fill the space with silent thoughts for hours. I think about my past, present, and future.
There are forces at work inside me, which I have difficulty identifying sometimes.
I understand Mania and can sense a manic episode headed in my direction. There are symptoms. When I was younger, these symptoms were more easily detected by my mom, and that frustrated me. I wanted to figure it out and beat her to the punch. I read about Bipolar I Disorder, researched, and learned about physical responses to triggers. I discovered what triggered me and stayed away from those before they became catastrophic. I learned–with help–how to manage my brain and keep the mania at bay. When I felt mania encroaching, I contacted my doctor. I tried to sleep, forced myself to eat, and stayed away from books, movies and songs that stirred up my insides. I began to know my body. I can now catch mania before my mom does and it feels like a tremendous success.
I understand Depression. I felt dread and anxiety in the pit of my stomach for the first time when I was thirteen. There were no psychiatrists in the area where I grew up. My pediatrician had no idea how to handle it or even recognize it. It was a feeling much like procrastination–the feeling of dread most kids experience on Sunday evenings, knowing the weekend is over and they are going back to school on Monday morning. That is what I came to believe was true for me. I was lazy and lethargic, irritable, angry, and sad for indiscernible reasons. Later in life, I was told that those feelings were contributed to my illness. My therapist said that my “self-focus” came from discovering how my brain works and did not mean I was selfish or lazy. I truly was not “in the mood.” Seriously? That’s a reality? Yes. Quite a comforting truth.
I recognize Bipolar I Disorder, which makes up the mood portion of my illness. The mood part is a combination of mania and depression. The “schizo” part is much harder to deal with. I sometimes hear voices in my head, experience paranoia, anxiety, panic attacks, delusions, irrational thinking, the loss of my memory, and many more symptoms attributed to Schizoaffective Disorder. When a few of these symptoms arise together, this may lead to psychosis. It is harder for me to identify because I have not been dealing with that part of my illness for the duration of my condition. It’s new, or only just discovered. It is important to acknowledge that psychosis does not mean “crazy” or to mistake “psychosis” with “Psycho.” That is another myth tied to the stigma. This is the part of my illness I have the most trouble dealing with and I would hate for anyone to misunderstand. With medication, family, psychiatry, and psychologist support, I live a happy, stable life. I do not experience psychosis frequently, yet knowing that psychosis is a real possibility scares me because it takes over my life and confuses reality. Understanding my mind and body has been no small task. It has taken a lifetime to recognize what goes on inside my head, while much of it still baffles me. The journey continues, and I am ever closer to unraveling the mystery and uncovering the invisible answers, while pondering in my nest.
I know I have told you several times about my love for running and having to quit because of injured knees. I loved to run like I love to breathe. I learned to run before I learned to walk. In elementary school, I ran the fastest mile. During recess, no one would race me, because they knew I would win. I won most of the running related events at “Field Day.” I ran the 800 and the hurdles on the track team in middle school, and I was captain of my high school Cross Country team. I trained with the boys, and won lots of races. I ran road races, one in which I achieved my personal record and took home the first-place trophy now sitting on my desk at home. I went to running camps, and I ran on my own time. My dad used to say, “Run like the wind!” Running was a huge part of who I am, and a significant loss. Now I am left only with stories.
My family filmed most of my childhood, and my mom transferred all of the tapes to flash drives for each family member. I take good care of everything. I am organized. Sitting here right now, I know where that flash drive is without having to search. I have watched many of the videos. One of the segments was funny at first and heartbreaking toward the end. Mom focused the camera on a three-year-old Samantha, my teddy bear, and my friend, Cameron. The movie “ET” had just aired. Mom asked, “Samantha, what are you doing today?” I answered, “My name is not Samantha! My name is Elliott!” “Oh, I’m so sorry, Elliott! What are you going to do today?” Elliott answered, “I am going to run, and run, and run, and never stop.”
While you are watching classic 80’s horror films this weekend and eating your children’s candy, notice that most of the movies involve asylums. When the characters’ accounts of evil deeds and supernatural encounters are disbelieved, they end up in psychiatric facilities where they are deemed “crazy.” Please know that this is fiction and far from the truth. People are afraid of the unknown, so they create stories that feed the stigma of mental illness. There are no “crazy” people, and the ones suffering the most are in need of help, not fear. We are not the bad guys.
I feel more comfortable writing about my struggles and successes when my name is Jane. The name provides a little protection; it is my turtle shell. My name is not Jane. It is my grandmother’s name and my middle. I was named after my dad, Samuel. My name is Samantha. Most people call me “Sam.” It is an honor to be named after one of the coolest people I know.
I am ready now to own my truth and to step out of Jane’s shadow. I have a psychiatric disorder and a label stamped on my head, but I do not let it define me. I lead a stable life, and I have schizoaffective disorder. This psychiatric disorder is like a mixed salad that you did not make for yourself. Imagine that you went to a dinner party, and the host brought out the salad as the first course. There is so much going on in this bowl that you cannot distinguish all of the ingredients even after you have tasted it. Schizoaffective disorder is full of indistinguishable ingredients. Not all cases are the same, but many people struggle with one or more of these illnesses: schizophrenia, bipolar disorder, anxiety, depression, etc. with a dash of salt and pepper on top. My illness is a mix of bipolar disorder and schizophrenia. From my perspective, it is so complicated that even after tasting it I cannot decipher everything within this salad.
*Shifts in mood/demeanor
*Unexplained dread in the pit of your stomach
*Sadness for no discernible reason
*Shopping sprees and accruing debt
*Too much sleep
*Lack of motivation
Unknown Ingredients: ???
As a writer, it is important to write what you know. This is what I know. As I embrace the complexity of my illness and the aspects I cannot fully understand, I must confess that I rarely eat salad.
***Chester’s story continues…If you haven’t seen or heard of Chester, I encourage you to learn more about him from previous articles. He is my cartoon self. He portrays my actions, feelings, and big events in my life. It is easier to see what is going on inside my head when I step back and look through Chester’s eyes. I encourage you all to embrace the cartoon character who inhabits your mind. You will find it helpful and fun!
Our story continues as all stories do…but first, a look inside Chester’s heart on the week he first he met Lucy.
When Chester was a young boy, he watched a movie that changed his life forever. He is a romantic, and perhaps this is why. Toward the end of the movie, the protagonist goes to the fair and rides the ferris wheel with the girl he loves. Since then, Chester vowed never to ride the ferris wheel until he was absolutely sure he was riding it with his true love, and never before. Many years passed. No ferris wheel. When Chester was twenty eight years old, he moved to a small town in north Georgia, where he met Lucy. Chester has a friend named Krupa who had a shop called “Roots and Remedies” next door to Lucy’s gallery. Inside his friend’s shop, there was a section by the window filled with models you could build. There was a ferris wheel standing completed and only for show. Chester bought that ferris wheel the very week he met Lucy…
Chester began to really love Lucy. Not in the “We’re just friends,” kind of way. He more than liked her. Not the way people “love” each other when they are infatuated or projecting. He really loved her. He loved her when she was goofy and when she made him laugh. He loved her when she was grumpy and it was his turn to cheer her up. They became so close that they could read each other’s minds and finish each other’s sentences! But he was too afraid to tell her; he was afraid of her rejection. So, hoping she may (or may not) know what it meant, he told her in Spanish.
“Te amo,” he said.
She said it in return.
This went on for quite a while, as Chester built up the courage to tell Lucy that he loved her–in English. Chester’s friend, Diana, told him that it didn’t count until you both knew what it meant and it was said in your native language.
Lucy beat him to it.
They were pulling up to a Mexican restaurant for dinner when Lucy said, “I think I love you,” to which Chester asked, “You think?”
Lucy said, “I love you.” Chester was so relieved. He responded with, “I love you too, Lucy.” From then on, the love blossomed.
This is the beginning of Chester and Lucy’s epic love story.
Five years later, on the anniversary of their first kiss, Chester presented the Ferris Wheel to Lucy, as he had known long ago that it would someday find its way into her hands. Years later, Chester asked Lucy if she did, in fact know what “Te amo,” meant, and she said, “Yes.”