A story about being on the outside looking in on a loved one's mental illness, based on my experience and personal reflections while caring for my mother. Completed with support from Braden Storytelling grant and the Stanford Storytelling Project.
Research, ethnography, writing, sound design. Credit to Jake Warga for helping with final mix
2017
The summer after my sophomore year in college, my mother became very seriously, and very suddenly ill. In a relatively short span of time, she stopped being able to sleep, had a series of severe panic attacks, and finally, had to admit herself into psychiatric care.
I returned home to become her full-time caregiver and together, we began to navigate a new normal.
My mom in the 1980s, shortly after immigrating to Sydney, Australia.
Mom had been diagnosed with major depression, and panic disorder. Together, we began to navigate the day-to-day of living with mental illness.
For me as her caregiver, there was the daily challenge of medication management, side-effect management and helping mom combat her anxiety. I tussled with disability leave, made appointments, and deciphered insurance bills.
Nights of poor sleep had left mom unable to verbalize her experience and needs. After particularly bad nights, she would only be able to speak in a stuttering whisper. In my mom’s own words, “depression took her confidence”.
Mom had spent nearly two decades living in English-speaking countries, learning how to express herself and be understood in her non-native tongue. She was talkative and outgoing. Losing her voice in this way was devastating.
Mom at her PhD award ceremony, standing next to my older sister, wei and holding me.
In doctors’ offices, over the phone to disability, and even to my own family, I became my mom’s primary translator. This role was deeply challenging for me because I knew how deeply it hurt my mom’s pride to feel unable to communicate her own experiences and wants and to rely on her daughter.
At times I felt unable to communicate the experience of being a caregiver for a loved one with mental illness. Just as I was on the outside looking in on my mom’s experience, so too were others on the outside of my experience.
When I returned to college I searched for other stories like ours, but found few. So few people within Asian and API community have come out with their own experiences of mental illness or caregiving. So I decided to make a story about us.
I sought permission from my mother to interview her as my main subject for the project. Note: Given how difficult it is to know if a person with a mental disorder can capably consent, there was a particularly ethical imperative for me to go beyond to properly obtain informed voluntary consent process. Researchers, tread carefully and responsibly! More on this, here.
A note for transcribing interviews for storytelling: It's helpful to put the entire interview audio file in an audio editor at the very start. As you listen through sections - you can directly cut up the tape as you hear sections you like, and organize as you go. Only manually transcribing the sections that speak to you during initial listens will save a lot of time.
Piecing together a script is a combination of placing sections of interview material in logical order, determining the overall direction of the story, and adding narration where needed. Depending on how well the interview subject frames what they're talking about, you may need more or less narration.
In order to complete this project, I learned how to edit, mix, and master audio. Early on, even during the scripting phase, I was putting “selects” (selections of tape from the interview material I had collected) into Hindenburg Pro, a neat software with a intuitive and simple interface for audio editing and cutting together small parts of the material to listen to as I worked.
The piece did not come together until I was working fully within the editor. You might have a fully scripted podcast in front of you, but when you get into the editor you might realize that flow is off in certain sections, or certain sections need more narration, and re-recording.
From the editing process.
After making this podcast, many have reached out to me thanking me for sharing our story, and experiences that are widely stigmatized in Asian / API communities. For me, deeper questions remain:
For Asians and Asian-Americans, what are the gaps in care and needs that haven’t been be addressed by our existing mental health system? What factors should we consider when designing experiences for users like my mom?
The strong stigma around mental illness in Asian/API communities begins in popular misconceptions around mental illness. First-generation immigrants like my parents grew up perceiving mental illness as “lunacy” - schizophrenia-type disorders, psychosis or mania. Depression is often associated with personal weakness or lack of mental “strength”.
How might we shift perceptions of mental illness from personal weakness and family shame to treatable disease?
Western approaches to treating depression emphasize the individual's experience and does not necessarily involve the family. My mother saw her struggle in the context of her role in the family. She saw her condition as placing burden on the family, making it harder for her to accept help from us, her caregivers.
How might we have better conversations with patients about the involvement of family members in their care?
My mom’s medication regimen deeply impacted her appetite, and caused daily physical and bowel discomfort. Chinese culture connects wellbeing with appetite and digestive comfort. Diseases have long been seen as related to digestion and one’s diet, medicine begins with fixing “imbalance” in the body.
In a culture that connects health with eating, the side effects of depression medication can deepen distrust of medication and impact adherence.
Stories about Asian, Asian-American or API experiences with mental illness remain few and far between. Though depression is much less stigmatized in other communities, it remains a point of shame in many communities of color.
The resources online and freely available for individuals or their loved ones who DO seek help are far and between. Going further from here, I am interested in interviewing other families or individuals about their experiences, and using the insights to design a tool-kit aimed at caregivers. When family members increase their literacy and understanding of mental illness, they can change the conversation about mental illness in our communities for the better.
Interested? email me at srajiang [at] gmail {dot} com.