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Emalee Gruss Gillis ’83 on Living Well with Mental Illness

Emalee (formerly Emily) Gruss Gillis ’83 recently published a memoir, The Other Side of Madness: Adventures on the Path to Living Well with a Mental Illness, available through major retailers. Gillis was first institutionalized in Africa after finishing her service in the Peace Corps. About 10 years later, she was diagnosed with bipolar disorder. In her book, she shares 13 strategies that have allowed her to thrive—get married, raise two children, and hold professional jobs—in spite of her mental illness. She also consolidated her top strategies into a TEDx Talk.

Following is a Q&A with the author, courtesy of Emalee Gillis.

What was your first experience with mental illness?

“Soon after I ended my service with the Peace Corps, a voice appeared in my head that wasn’t mine. I had lived my whole life with just my own voice in my head like everyone else, so it was quite scary to have another voice in my head.  However, the friend that I was staying with encouraged me to follow the voice because he thought it could take me to a new spiritual level.  The voice had said he wanted to teach me. I lay down on a bed and listened. While I was listening to the voice, my body became catatonic and I was completely unaware of my surroundings for three days.”

What decisions were made with your body while you were catatonic?

“When I became catatonic, I was staying in my friend’s hut deep in the bush of Togo. When my friend couldn’t wake me, he somehow strapped my catatonic body to the back of his motorcycle and took me to the nearest town where he could get a jungle taxi. He took me to the Peace Corps office in the capitol city.”

“The Peace Corps refused to offer treatment, since I had completed my service and was no longer officially associated with them. The American Embassy became involved. The Embassy called my parents and asked for $20,000 to medically evacuate me from Africa. My parents started the process of mortgaging their home to attempt to raise that amount of money. In the meantime, the Embassy decided to fly me in a stretcher to Bingerville in the Ivory Coast in Africa, an institution that an American psychiatrist described as an “overpopulated, understaffed, underfunded hospital analogous to our stateside public psychiatric institutions of at least 50 years ago.”

Tell me about that insane asylum in Africa.

“I opened my eyes and discovered that I was in a dirty room with peeling paint lying on a cot with a thin mattress that had no sheet, pillow, or blanket. I was wearing pants and a top. I had gone to sleep in a baggy dress. I no longer had my backpack, which contained my passport and money. Trying to discover where I was, I walked down a dark hallway towards an open doorway. The doorway led to a cage-like enclosure. A tall wire fence with a locked gate surrounded a large square of pavement. The enclosure was filled with crazy people doing repetitive movements or talking to themselves. Some of them had dots or slashes painted on their arms, faces, or legs from the work of medicine men. There was no staff in sight. Soon after I entered the enclosure, a man approached me in a threatening manner.”

In that terrifying African asylum, did you see anything positive that could be emulated in the West?

“Yes! When that man approached me, two women came to my aid and were able to get him to back down. These two women then asked me who was staying in the institution with me. When I told them I was alone, they were shocked. In that African institution, every single person had a family member staying beside them and with them throughout their stay to help them feel safe and connected. In the US, family is generally barred from accompanying patients in an inpatient setting. A few years after I returned home, my husband stayed with me in a small rural hospital while I was in psychosis and I saw firsthand how powerful it is to have the comforting and centering presence of a family member during a mental health crisis.”

How did you get out of Africa?

“The Embassy psychiatrist evaluated me while I was in Bingerville. She determined I was lucid and well enough to take a flight home. In order to pay for the flight, the Embassy said I had to sign for a loan from the State Department. After I signed for the loan, the Embassy official molested me. That’s when the stigma of mental illness first hit me. I knew no one would believe me if I told them what the Embassy official had done because I was officially documented as a crazy person.”

What kind of projects did you do in the Peace Corps?

“I’m most proud of my work with a local vaccination team in Gabon. I developed an adult education program to address the concerns that kept women from having their children vaccinated. The team implemented the classes in 100 villages. Our local team was evaluated as best in the country by the World Health Organization primarily because of our adult education component. I also helped open a literacy center, did latrine improvement projects, and well improvement projects.”

What happened when you first returned to the States?

“After living in an African village of mud huts for two years, I found the stimulation of Western life overwhelming. Within two weeks, I was back in a psychiatric institution. This time there was no voice. I just slowly, terrifyingly lost my ability to think. I am unusual in that I can remember my psychosis after recovery. I remember not being able to understand English, but in my memory afterwards, I can understand what people were trying to say to me. I was institutionalized more than once and became severely depressed. I became suicidal. Who wants to live when life means a revolving door of psychiatric hospitals?”

How was being institutionalized in the States different from in Africa?

“The States were certainly more hygienic. The bedding is clean; food appears regularly; and staff is ever-present. But even in stateside institutions, it is not safe. Staff can’t be everywhere, and the institution is filled with unstable people. Medication management and an attempt to keep people safe are top priorities in a Western institution. I didn’t experience much of other kinds of care like talk therapy in the US institutions. By far, my best experience in the hospital was when I was in a small rural hospital where there was only one other patient in the hospital at the time. They allowed my husband to stay with me, and I recovered within 24 hours.”

When were you accurately diagnosed?

“My diagnosis was muddy for many years. Because my brother had bipolar disorder and that illness has a hereditary element, that diagnosis was talked about from the beginning. However, because I have gone into psychosis so deeply and suddenly, there was also the possibility of meningitis or swelling of the brain from an illness I had in Africa called filariasis. I wasn’t firmly diagnosed for ten years, until everything but bipolar was ruled out.”

How has the stigma of mental illness affected you?

“I think the stigma of mental illness got in the way of determining my diagnosis. Because the stigma of mental illness is so ugly, I spent so much time and energy trying to find an alternative strictly biological explanation for my symptoms. I didn’t have models of bipolar people living strong and positive lives, only the stereotype of the mentally ill as a danger to society. Even now, when I hear a media report of a shooter who has a “history of mental illness,” I have to remind myself that people with a “history of mental illness” can learn to manage their illness well and be a positive contributor to society.”

Did your bipolar get in the way of having a relationship?

“I have been very lucky in love. After I fell in love, I was terrified to share my history of mental illness; I was certain he would abandon me once he knew. In fact, he was very understanding. My husband has played an important role in supporting me on my journey to wellness with a mental illness. We have been happily married for almost 30 years.”

Was it hard to adopt children with a diagnosis of bipolar?

“When we started the adoption process, my diagnosis still wasn’t clear. Biological explanations were still on the table.  Our first adoption was through Open Adoption, where birth parents choose the people who will parent their birth child. My diagnosis was confirmed in the middle of the process while we were waiting to be chosen. Once I had a diagnosis of bipolar, the adoption counselor said she would have to reveal to any potential birth parents that I had bipolar. I was convinced no one would ever pick us. Why would a birth parent choose a mother with bipolar disorder when so many other potential adoptive mothers were available? Surprisingly, a set of birth parents chose us and were comfortable with the letter my psychiatrist sent stating I was healthy enough to parent. For our second adoption, we went international. Again, a strong letter of support from my psychiatrist was critical to the adoption process in Korea. We were very fortunate; both our kids are healthy. My son came home to us at one week old, and my daughter came home at five months old.”

What kind of work were you able to find in the States?

“When I came back from the Peace Corps, I finished a graduate degree in public administration from Penn State, where I earned a 4.0 GPA. That degree led to a job as the associate director of a legislative agency called the Center for Rural Pennsylvania. From there, my husband and I started a consulting company focused on transportation planning and community development planning. I also worked as a freelance writer for six years and a research interviewer.”

Have you learned to live well with a mental illness?

“Yes. Over time, I learned not only to survive my mental illness, but to thrive. In a typical month now, I might have one or two days where I feel some depression or anxiety. But, 30 out of 31 days I typically feel good positive energy. I have found my joie de vivre again.

“In my memoir I identify 13 strategies that I use to live well with a mental illness. In my TEDx Talk, I consolidated the top strategies into three key tools that I call my toolbox for bipolar disorder. I designed the toolbox with bipolar disorder in mind, but some of these tools might be useful for people who have other mental illnesses. The tools may also be helpful to people who don’t have a mental illness but just want to live a healthier life mentally.”

What is the first tool in your toolkit for bipolar disorder?

“The first tool in my toolbox for bipolar disorder is to identify and interrupt unhealthy thinking patterns. I noticed that my psychosis begin with smaller unhealthy thoughts that take root and grow. I use meditation to monitor my thinking to identify unhealthy thoughts that take too much of my mental energy or come too fast. I have learned to interrupt those thoughts with meditation and breathing before they cascade into mania or depression.”

What is the second tool in your toolkit?

“The second tool in my toolbox for bipolar disorder is a flexible medication plan. I take extra medications only when I need them rather than taking large doses of medications every day as is typically prescribed for a bipolar diagnosis. If I can’t interrupt an unhealthy thought with meditation or breathing, I take a small dose of Zyprexa. The secret to my success is nipping unhealthy thoughts in the bud. Those thoughts never have the chance to escalate into depression or mania. I enjoy fewer side effects and a much clearer brain by taking a much lower daily dose of medication than I used to take on a traditional medication strategy.”

What is your third tool?

“The third tool in my toolbox is every day working towards building a healthier brain. Neuroscientists have identified a plethora of specific actions that can be undertaken to launch a brain from an unhealthy state like depression into a balanced, more centered state. Specific actions that I undertake on a daily basis to build a healthier brain include exercising six days a week, daily meditation, identifying and achieving specific goals every day, finding three things to be grateful for every day, connecting with family and friends, playing music in two community bands, as well as other healthy activities described in my memoir.”

How can families help the mentally ill?

“Families can help the mentally ill by assisting them in choosing one or two new strategies to work on that promote wellness. Then, families can support the mentally ill person as they struggle to make that strategy a regular part of their lives. A written health action plan is helpful to identify priority strategies and action steps to be taken if the mentally ill person begins to lose balance. Families must also accept that one human being can affect another human being’s life to only a certain degree. The struggle can be long and frustrating. It is important that family members take time to also take care of themselves in the process.”

Where is your memoir available?

“My memoir is available in paperback and kindle version on Amazon. The memoir is called The Other Side of Madness: Adventures on the Path to Living Well with a Mental Illness.”