I am the first Portland, Oregon-area woman author to publish a memoir about schizoaffective disorder (a little talked about diagnosis of bipolar disorder and schizophrenia). My memoir is called, Sherry Goes Sane: Living A Life With Schizo-Affective Disorder. Most books on mental illness are written by doctors and clinicians, but I feel the personal stories of “lived experience”- like mine and others fighting the pressure of stigma with mental health disorders- are more meaningful because they help us to see the person first, not the diagnoses. Schizo-affective disorder is a hard disease to tackle. Societal pressures seem to dominate your routine and the sheer process of overcoming the stigma of this disease is complicated.
I remember when I was young, I used to think people were talking about me and judging me because of who I was. My paranoia carried over into my adulthood. I felt paranoid because I couldn’t focus on something beside myself when people looked at me funny. When I was really upset about something I shook. My knees became rubbery as I disagreed with a speaker in a meeting. Being around higher ups, I felt like I was going to erupt like a tempestuous volcano. I hung my head, not humble like, but in disgrace of not accepting myself for being me. My ship was sinking. My shakiness and weak knees didn’t necessarily stem from my disease. It happened when I was physically abused by my stepfather for defending my brother when he was 7. My stepfather and my mother left him alone to go drinking and when they came back home, I arrived home from work and stood up for my brother. I took a blow to the jaw. My world fell apart and my life changed course.
In my later teens, I lived through the hippie era. Those years were characterized by driving around in a white Studebaker with flowered decals on the top and sides, struggling with hallucinations from stress and experimenting with drugs. In my 20’s I was in lockdown in several mental health institutions and Oregon State Hospital was one. 1972, I marched to the state capitol in Salem by myself and fought for equal pay rights- and was later sent a letter from the attorney general that there would be no more discrimination in the work force. I became an artist, a certified nurse aide and a teacher. With the help of medication and health care professionals I overcame the childhood abuse from my alcoholic parents, the suicide of my mother, and the loss of my brother to AIDS.
There were the times when I was off of my medication that depression seemed like a dead end street and the suicide attempts made it unbearable. I’d be so high on life that I thought I was Jesus Christ. I asked myself, “Did anyone know the person who lived inside my head?” The answer is “No.”
The thing is that my sister, my friends, and other people of society were busy with their own lives. There were weddings to plan, deaths in the family, and babies being born. Life was going on before all my trauma and continued to go on. They weren’t shunning me. They were just having different experiences than me. But I felt I carried the weight myself. I lost my job as a Preschool teacher but there wasn’t any reason for me to lose my job. The establishment did know about my disorder. I applied at another Day Care Institution and there was a question on the form that asked, “Do you see a psychiatrist? Or have you seen a psychiatrist? Do you have any mental health issues?” I said, “Yes,” because I wanted to be honest. Their reply was to give me a lot of propaganda- like Psychiatry is the theater of death. So I filed a civil suit and won my case. That was my legal fight against stigma. I realized that if I wanted to reach out to the health professionals about my disease and vent to them that I finally could.
Over the last 46 years of dealing with schizo-affective disorder, I found that beating the pressure of criticism and self doubt was to establish a plan. I created Sherry’s Master Plan to help me become stable and to give hope to others struggling with this disorder. Measures I took to maintain my stability are outlined in my plan here:
1. Called the doctor or crisis line in case of a crisis.
2. Took my medication on time and never went off my medication. Ate healthy foods and took vitamin supplements. Got plenty of rest. Informed the doctor of my symptoms and the side effects of my medicine and if he or she didn’t get the message, informed him again by email, letter, or verbal communication.
3. Spotted when I was going out of control and found out what trigged a crisis by writing it down. When I was panicky I talked to a trusted friend, my sister, husband, doctor or counselor about it.
4. Made a schedule of the days of the week and graded my activity for that day. I could then see how much I accomplished for that day.
5. Had a support group, members of NAMI and got a reality check.
6. Drew a diagram of the things I loved, liked and didn’t like and reviewed them every day.
7. Meditated, walked, painted, and listened to self-affirmation tapes.
I also regularly share of story of recovery with others and love doing so. I am a lecturer in a Portland-area hospital inpatient psychiatric ward-sharing hope and resources for when patients leave the hospital- and a trained “In Our Own Voice” speaker for the National Alliance on Mental Illness (NAMI). I recently participated in a history project at the Oregon State Hospital Museum and they recorded an interview about my experiences there back in the 1970’s.
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I have lived with schizoaffective disorder for decades, an experience I drew upon strongly for my memoir, Sherry Goes Sane. I have spoken in psychiatric wards, hospitals, and universities for the National Alliance of Mental Illness, and also as a speaker for In Our Own Vice. My article “Bringing Peace and Happiness to the Psych Ward,” appeared in the 2013 Spring Edition of the NAMI Voice newsletter, published annually. I am passionate about helping those with special needs and have been a preschool teacher for children with ADHD, autism, and bipolar disorder. I have also worked as a certified nurse aide for twenty years helping patients with cancer, dementia and alzheimers. I have been interviewed for an article in the Clackamas Review by Ellen Spitaleri, and have a couple of youtubes: an interview with Ann Kasper, the Advocate for Wellness Channel and my Keynote Address to NAMI Lane County’s Holiday Dinner.
Sherry can be found on her website, Facebook and Twitter
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hey, Sherry, this was a spectacular post of triumph. I have bipolar 1 with psychotic features. I liked the part about making a list of what you did during a particular day. I have a bad habit of not giving myself enough credit for the things I do accomplish. I’m a bit of an overachiever and am hard on myself. I’ve had my issues with NAMI…but have been published locally once, and nationally twice, and I um, have a bit of personal work to do before I can …let’s just put it this way, they ask me to volunteer for this or that, and then maybe with my hypomania they are overwhelmed by me and avoid me. It ends up for me looking like mixed messages. I’ve had bipolar for 25 years and have had that sense of rejection, a lot lately. I came down with Tardive Dyskinesia, and had a treatment resistant type for three years, and can only take a small amount of the medicine I need, medicine which caused it. This leads to my being more manic than I have been before the TD. So while, in the past I volunteered for my local drop in, (for five years..taking meetings to the psych ward and developing other meetings that are still going today as we speak) now they say that I am ‘not ready’ to volunteer. It’s hard. It makes me draw back into myself and isolate in pain and stigma. I think It’s sad that stigma would exist at a Drop In Center, but being a hyperverbal, high-functioning bipolar person…or just a mentally ill person in general that doesn’t meet their requirements, is hard to take. So I am happy to see your post because I relate on so many levels with your story. My best friend is bipolar and her son schizoaffective, and I’m going to go ahead and forward her this story, because I love her, and I know that she loves her son. Thank you so much for coming forward with a powerful story like that. I really appreciate it. I hope to hear from you again soon. @bipolarbrainiac bipolarbrainiacSFL@hotmail.com
Dear Sherry, I am trying to find a forum for a more appropriate longer for connect…like maybe your website, I clicked on it, but it wasn’t active. Maybe it’s just not active from here. I want to buy your book. Is it on Amazon? I want to talk to you about NAMI, too. We have one here. I’m sure you are a busy person but I just wanted to plumb your brain for ideas. firstname.lastname@example.org
2nd reply…still inspired by your ‘in my voice’ public speaking. for us who have been ill for a long time, I think we can really help other people.