There are some people that set out to make life easier for others. They envision things that don’t exist. They build, create, innovate, fundraise and hustle to turn their dreams into reality. Rachel Austin Bernstein is one of those people.
Austin Bernstein is a Twin Cities-based actor who performs under the name Rachel Austin. She is the founder and director behind the Love Labor Project. She began Love Labor Project with an Artists Initiative Grant from the Minnesota State Arts Board. Austin Bernstein wrote the grant in order to develop a one-woman show highlighting her own experiences of caring for her mother going through cancer for the past 16 years. Austin Bernstein is writing, creating, self-producing and starring in that show. Luckily, she is no stranger to hard work. She submitted the grant in the spring of 2018 and now, one year later, her show opens Nov. 14.
Austin Bernstein’s mom Ginger was diagnosed with ovarian cancer in 2003, the summer before her junior year of high school.
“My mom is single and I’m her only child. She was divorced and then diagnosed within three months. We went out of one war and into another one,” said Austin Bernstein, reflecting on that time. They were told that Ginger would not live to be 65 years old, but she has beaten the odds. Since the initial diagnosis, mother and daughter have dealt with 6 recurrences, various chemotherapy protocols and treatments, one clinical trial, five cancer-related surgeries, a daughter leaving home, and always-present impending loss.
The Love Labor Project is an autobiographical, one-woman show. It takes a brave person to create a show about her own life as she’s going through it.
“To make work about something that’s so emotional and deeply personal while I’m going through it is messy,” Austin Bernstein said. “There is a lot that I’ve censored out. This is about my mom and her story and her medical stuff. She’s changed a lot over the years and I have too.”
Austin Bernstein is utilizing sound and video projection to help tell the story in the show. “I wanted to do more experimental work. I wanted to get away from a long-form monologue,” she said. She’s mining other forms of media as well like voice recordings and emails sent to her girlfriends over the years.
“It took hours to cull through the documentation of my mom’s illness. I have forgotten so much- which is also kind of incredible,” said Austin Bernstein. “Seeing all the cancer accouterments my mom and I looked at each other and we each said ‘this is crazy!’ I can’t believe we lived through this.”
The show has been a way for Austin Bernstein to make art out of the trauma her family has experienced.
“When you’re going through it, you’re just going through it,” she said. “I feel so lucky to be chronicling what this is like.”
Going It Alone
In the beginning, Austin Bernstein’s mother and grandparents sheltered her a bit. She wasn’t the one accompanying her mom to all the doctor’s appointments and serving as the main caregiver. Over time, things have changed.
“I knew immediately when I was 16 that I was all alone. There was one girl in my class whose mom was diagnosed with cancer, but that was a very different situation. I never had any peers going through the same thing,” Austin Bernstein said. “I always felt alone- it was always a super lonely thing.”
After graduation, Austin Bernstein moved to Minnesota to attend college and her mother remained in Dallas. Along with figuring out college in a new state, living on her own for the first time, and building her life as a young adult, she was there for her mom every step of the way. “We talk a million times a day, over the phone and text. We are each other’s’ person.”
Caregivers under the age of 45 account for 12 percent of the caregiving landscape, but there is currently no support in place that is tailored to the unique needs of young adult caregivers under 40. The complexity of navigating young adulthood are numerous (career, relationships, often fragile finances) even without the added complexity of having a parent with cancer. When caregiving is added on top of that list, it creates a unique set of challenges and stressors that often make young caregivers feel isolated and alone.
Like any young adult with a parent with cancer, or other serious illness, Austin Bernstein has had to face situations and challenges that many people don’t face until their 50s or 60s.
“There were times when I just had to pick up the phone and use my grown-up-woman voice,” she said, laughing. “I would see the brochures and groups and all the support my mom was getting. I wished there was something for me.”
Austin’s performance of the show that led to the broader work of Love Labor Project will premiere at Pillsbury House and Theater Nov. 14-17, 2019.
“I’m going to tell the story of 16 years of cancer… there’s surprises,” Austin Bernstein said. Tickets to the show are now on sale. Tickets cost $10 – donations are welcome at the door, and no one will be turned away for lack of funds. Young adult caregivers can even apply for free tickets on the website. Tickets are available online.
The show is directed by Gwyneth Shanks. Each performance will also feature a 20-minute talkback for Austin Bernstein to gather audience responses and ideas around caregiving and needs of caregivers.
Austin Bernstein doesn’t want other young adults to have to go through the same struggles and loneliness that she did. That is a huge part of the inspiration behind the Love Labor Project.
The performance is a way for the broader community to interact with what it’s truly like to live as a young adult caregiver, and give the audience ideas about how to become better caregivers themselves.
“I really wish people were better at showing up for one another,” Austin Bernstein said. “When the person who is supposed to take care of you is sick – you don’t even know what to ask. Our brains are completely overwhelmed and when we’re young, we don’t always know what we need.”
So rather than asking a young adult caregiver ‘what do you need?’ Austin Bernstein recommends saying things like, ‘I’m going to bring you food, what day will work?’ or ‘I’m going to do the Target run for you guys this week, send me your list.’
Beyond the show, the Love Labor Project is a new community being formed in the Twin Cities and beyond by young adults who have parents who have, or have had cancer. As a part of the Love Labor Project show’s development, Austin gathered young adults in similar situations to see if they could come together and define their needs.
“I was raised in the South so my ‘get in your business’ and my Southern Hospitality is high,” Austin Bernstein said. Austin Bernstein wants to meet other young adult caregivers where they’re at and give them what they need. “In the course of my work, I found that I had been presented an incredible opportunity to actually move the needle – to create the resources that I wish I had had for the last 16 years.
“I learned first-hand that I am not the only one craving this connection. At our first small gathering in July, a group of us sat in a room together, and it was one of the most important and transformative experiences of my life. I had never before been in a room with other people like me – people who understood the depth and the breadth of what we face, but have more questions than answers about to handle the big and little things that come with cancer.”
In partnership with organizations that support caregivers, the Love Labor Project network that was formed this summer is working with Austin Bernstein to design resources, services and storytelling projects that will serve the specific needs of this community. Love Labor Project is a partnership with Minnesota Ovarian Cancer Alliance (MOCA), Gilda’s Club – Twin Cities, Jack’s Caregiver Coalition, and Angel Foundation.
Already the project has had an impact.
“When you’re this age and making a life for yourself and figuring out what you’re going to do- and a parent goes through a crisis and is very ill, it changes everything. Figuring out that there are others going through the same thing is refreshing and really necessary. It can be really hard to find your voice,” said Lauren Sheibley, a group participant. “It’s been really meaningful for me to be a part of the group and I’m really proud of Rachel.”
Austin Bernstein just finished her Graduate Certificate in Arts and Culture Strategy. She has extensive experience in nonprofit leadership, she is a teaching artist, event host, and does voiceover work. She is currently looking for full-time work, along with building the Love Labor Project. The show will run for five days, however the project will continue.
There is a gofundme set up to help with startup costs of the organization. The website is already launched and accepting welcome surveys from young adult caregivers. The longer term goal is to become an organization that serves all types of young adult caregivers, beyond just the cancer community. The vision is for support groups specific to young adult caregivers, continued social opportunities and educational resources on topics like: Estate planning, end of life decisions, anticipatory grief, PTSD and more.
“The educational topics are limitless, and the information is out there,” Austin Bernstein said “And it shouldn’t be a mystery.”