Digging Deep: A Conversation with Sheri Sobrato Brisson
A passionate social entrepreneur and philanthropist, Sheri Sobrato Brisson has dedicated her career and resources to supporting children and teens during periods of emotional distress. Drawing in part from her own experience as a brain tumor survivor, Brisson co-authored the award winning book Digging Deep and the mobile game Shadow’s Edge, both of which act as a journaling tool for young people facing health challenges.
Brisson also helped launch the Sheri Sobrato Brisson Brain Cancer Survivorship Program here at UCSF, with the goal of improving quality of life for patients by focusing on emotional, physical, and cognitive health.
Here, she talks candidly about her diagnosis, recovery, and helping those living with brain cancer or other serious illnesses.
Q: Tell us about your own story and what led to your diagnosis.
A: I was diagnosed when I was 24. I was independent at that point, but then I [moved] back to my parent’s home and was fortunately treated at UCSF, which saved my life.
I actually had experienced brain tumor symptoms for a lot of my life. There was some frustration of not being able to find out what was wrong with me, but my symptoms changed to the point where they were pretty aggressive that a colleague noticed. Her brother happened to have a brain tumor himself, and it was in the same area of the brain, so some of the symptoms were quite similar.
So I got an MRI, and I’m happy to say that I was pretty relieved. I know that’s a weird way of describing how one would feel when you get a brain tumor diagnosis. I was scared to death too, but that was the beginning of the road back to health for me.
Q: What was the hardest part of your recovery, especially when trying to reintegrate back into your life?
A: Some of the difficult things for me were very physical, because the tumor was in the back of my head. I didn’t have great balance. I wanted to go biking and fell off many times. I fell over trying to play tennis. One of the hardest parts was realizing that I was going to have to relearn some of those things again. But it was really important to me to try and do things that were important for my healing.
What I didn’t do was take the time to go through the feeling stage. I couldn’t feel my feelings at first, and the hardest period was when they exploded. It was about 5 years later, when my jaw was broken by my dentist accidentally. I’m not an angry person, but that opened the floodgates. And once I started feeling angry, it was uncontrollable. It was triggered by being angry at a different situation, but what it did was [release] all those feelings of anger that I had stuffed inside and pushed down. And after the anger, I went through a huge period of sadness.
Q: How did you overcome that?
A: I realized that I couldn’t get over cancer; it was always going to be part of me. I had to get to the point that I could integrate the fact that I had cancer, and that it was part of who I was.
I could actually grow from the challenge and realize all the blessings that came into my life because I had been sick. I got out of business and back into counseling psychology, which was what I always wanted to do. I learned how to communicate more authentically with people in my life. I was able to ask for help, which I never had been able to do before. That level of richness and connection that I have with not just other cancer patients, but with anybody that has gone through anything in their life.
Q: How did you come up with Digging Deep?
A: I had been a volunteer counselor working with patients and families. When I would talk with kids one on one, they were very proud of their stories. They did have a lot of feelings, but maybe they weren’t sharing what was going on. So my solution was to come up with this book called Digging Deep.
It looks really different than a typical workbook that you would receive in the hospital. It’s loaded with beautiful art and questions. People need a safe place where they can work through [their feelings] but also go back and reread what they’ve written, so they can get that self-reflection.
Q: How does your mobile game Shadow’s Edge extend on that?
A: It really came out of the book, which started with trying to help people find themselves and also connect to others. First, a lot of us don’t even understand what we’re thinking and feeling. So I wanted to create something to help them identify their feelings and be able to communicate them. And that it’s ok not to be ok. And that people are going to be there for them.
So we decided to make a digital game. Like with the book, you put the words down, whatever those difficult feelings are. In the game, you put it both in a journal that you create, and you’re also able to create graffiti.
Q: In addition to your philanthropic work with Digging Deep and Shadow’s Edge, you’ve also given to the Sheri Sobrato Brisson Brain Cancer Survivorship Program. What was your vision for this program?
A: It’s my dream that [a program] that can start at UCSF, which I credit for saving my life, could become a model for other brain tumor centers, and other patients. I think that the brain tumor community has its own unique challenges that make it different from the cancer community. One of the biggest things that I’m really proud of is the cognitive rehabilitation clinic that really pays attention to the emotional, behavioral, and information processing changes that come along with the challenges of someone who has a brain tumor.
Q: What advice might you have for someone who’s been diagnosed with a new diagnosis?
A: For me, it was an important lesson to not have to be strong all the time, and to let people take care of me. The other thing is letting people know what you need, and to know yourself well enough to know what that is.
For me, it was about structuring my life. I figured out my needs, like my need for creativity. I needed to be surrounded by happy, motivated people. I wanted to take more chances, be more athletic, and all these things that I learned I needed to do. But then I had to make that effort with baby steps. Like how do I go one step at a time and structure my life to meet my needs? It wasn’t a straight path.
Watch the full conversation here, with Sheri Sobrato Brisson and UCSF neuro-oncologist Susan Chang, MD.