[Cross-posted from CaringBridge.org, originally published June 2019. Photo Caption: My mom gave me this golden heart-shaped locket when I was child. Her photo is on the left, mine is on the right. This photo of her holding the locket was taken shortly after she passed away of uterine cancer in 2015.]
You can never know where tragedy will lead.
In my case, the tragic loss of my mother in 2015 led me to team with CaringBridge, on my way toward earning a Ph.D. in Computer Science. As the first and most widely used global social network for communicating during health journeys, CaringBridge offers a wonderful study site to work on important scientific research.
Unexpectedly however, our research results prodded me toward my own spiritual rebirth. So, how did science point me toward spirituality?
I Questioned Religion
Mom was a staunch Roman Catholic, and as a kid, I wanted nothing more than to be her perfect little angel. You’ve never seen a kid make the sign of the cross so perfectly, or harmonize to all the church songs with such devotion.
Yet as a teenager, I questioned religion, eventually giving it up after leaving home for college. I felt liberated in my newfound agnosticism, but it broke mom’s heart to think she had failed to raise her daughter in her faith.
Religion Meant Everything to Her
By 2015, I was finishing a bachelor’s degree in neuroscience at the University of Minnesota, well on my way to becoming a professional scientist. But Mom and I weren’t on speaking terms.
She couldn’t accept the person I was becoming. Religion meant everything to her, but to me, it felt like a wound. I didn’t know how to break through and connect with her.
She called me a few days after St. Patrick’s Day. It was a short call.
“I have a uterine cancer the size of a cantaloupe. I’m having a hysterectomy tomorrow,” she said. There was little emotion in her voice.
I responded, “OK, Mom. I love you. I’ll come see you after the surgery.” Instantly, my heart burst. I already knew.
Three months later, she died at home in her bed, cradling her infant granddaughter in her arms.
After her death, I sat alone with Mom for about 45 minutes, sobbing quietly. I held her hand, trying to retain its warmth for my brothers, who were on their way from the airport. A part of me died in that room with her.
Mom’s CaringBridge Site
A few days later, I discovered Mom’s CaringBridge site and read every last word in one sitting. One of her best friends had kept a short Journal for her, befitting the brevity of her battle.
All along, someone else had documented the key moments as I tended to my dying mother, head spinning. I remain grateful for this gift. It means a lot to revisit those hard moments, always with fresh perspective.
Fast-forward to 2016. I had just started a Ph.D. program and was attending a routine meeting at my lab, GroupLens Research. One of the professors mentioned something that felt a bit too synchronistic to ignore: our lab had formed a multi-disciplinary collaborative research team with CaringBridge … and did any of the new doctoral students want to get involved?
My heart flared. On top of all the pressures of starting a Ph.D. program, the trauma of Mom’s death had opened a dark hole within my soul. She and I were never close in the way moms and daughters are “supposed” to be. I had lost a person I never truly knew, yet loved all the same.
Science and Healing
I didn’t know how to confront those feelings, and I didn’t have much time to think about it. My world was spinning with academic requirements, and my mental health was deteriorating, as it does for many grad students.
Yet there it was before me, an unanticipated opportunity to study technology for supporting patients and caregivers in crisis. I never would have imagined that science would offer an opportunity touching so close to my heart.
Skip ahead to 2018. I had worked with the CaringBridge team to deploy a survey asking patients and caregivers to identify the types of support that matter most during cancer journeys. Some of you reading this post may have participated in the survey … thank you.
Balancing Two Journeys
Working on the project had been deeply empowering. At the same time, though, it felt emotionally devastating, as if I were dancing alone in the shadow of Mom’s death.
As a fledgling Ph.D., I had no idea how to balance my healing journey with my academic ambitions. So, I essentially ignored the former, worked myself to the bone, and shattered what remained of my mental health.
Silence Creates Stigma
The next part of my story is hard to share publicly. But silence creates stigma, and stigma destroys lives. If even one reader out there finds hope through my honest sharing, it will have been worth it.
For two hours one day, I sat atop a Mississippi River cliff. My spirit felt so annihilated and my pain so consuming that the roiling waters below seemed to offer an immediate and final solution. I wept and dangled my feet over the edge, trying to build up the resolve to leap.
Yet, by some mysterious spark of resilience, my languishing spirit held on. I texted my therapist a picture of my sneakers, suspended on the edge of life and death. She called the police. I made it home in one piece.
After Darkness … Light
In retrospect, the whole episode feels totally surreal. However, I now believe that I needed to experience that darkness before I was ready to find my light. I am likewise humbled and awed by the way that the research, although it had been so incredibly difficult, ended up showing me something profound about myself, and the type of support that I need.
In social computing, past researchers have mostly studied ways in which patients find emotional and informational support from online health communities like CaringBridge. Most of the survey we created asked about how people can instrumentally assist patients and caregivers through actions like rides to the hospital, food, or donations.
Power of Spiritual Support
But because we saw that religion and spirituality are such an important topic in CaringBridge Journals, we also asked about spiritual support.
When the results rolled in, we were met with a surprise. We found that on average, CaringBridge users rated spiritual support to be the most important form of support along cancer journeys—even more important than emotional, instrumental, or informational support.
Perhaps that seems obvious, but I’m excited to capture this information quantitatively for the social-computing community. We hope this result encourages technology researchers and builders to explore new ways to embody spirituality in their designs. Stay tuned for more blog posts on our other results; we will link to the full paper when the manuscript becomes available.
Hungry for Evolution
When I first saw our survey results, I imagined Mom laughing. It’s like she spent her life trying to persuade me to believe, when really, it was destined to be her death that helped me connect beyond myself.
Seeing the data, something inside me simply clicked. I felt tied to everyone out there who has endured this type of loss. And I felt my spirit within me, singing with newness, hungry for evolution.
Path Toward Healing
Since completing this study, I have developed yogic and meditative spiritual practices that are helping to heal my relationship with Mom and discern my path through this life.
Mom probably (err, definitely!) would not have chosen these particular practices for me while alive, but I like to believe we’ve both come to understand things a bit differently following her death.
If nothing else, the experience has taught me to embrace my pain, find its meaning, and emerge with my scars, a changed being.
Keep Pushing Forward
If you’re also on an agonizing journey, keep pushing forward. Be with your pain. Honor it. Move through it. You cannot know where your journey will lead, what you will learn, or how those learnings might help the world.
If you make yourself receptive to the gifts your experience has to offer, your light will become brighter, even as your darkness grows darker. You may find your own spirit, reborn in unexpected ways.
Share Your Thoughts
So, now I’ve shared my story, but what do you think? How could technology support your own spirituality as you navigate health crises? Share your thoughts in the comments below or send me an email at firstname.lastname@example.org. I’d love to hear your stories and ideas. Or if you might be interested in participating in future research, that’s always helpful, too!
Help is Always Available
Note: We can all help prevent suicide. The National Suicide Prevention Lifeline provides 24/7 free and confidential support for people in distress, prevention and crisis resources for you or your loved ones, and best practices for professionals. Dial 1-800-273-8255. Another option is available through SAVE (Suicide Awareness Voices of Education), founded in Minnesota in 1979. Dial 1-800-273-8255.