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Guest Blog: Finding Solace in Art and Running After My Sister’s Death

Published on November 17, 2023 in Gray Nation Endurance, Stories

Guest Author: Chelsea K.

I’ve been an artist since I was a little kid. In 2011, I moved from San Francisco to New York to pursue a Master’s in Art Politics at the Tisch School of the Arts at New York University. I’ve been here ever since, working in the arts and doing my own socially engaged projects. I’ve also worked in commercial galleries and artist studios, which is what I was doing at the time my sister, Shayna, was diagnosed with glioblastoma in 2017.

My Sister Shayna’s Diagnosis

Chelsea (left) and Shayna (right)

Shayna and I were really close. She was my big sis — just two years older than me. She was a firecracker and so quick-witted. Everyone who knew Shayna was struck by her willful, passionate spirit, intelligence, and humor. My family thought she’d have been an excellent lawyer. She was sharp-toothed, ready for debate, whether about what you had for breakfast or who should be seated in Congress.

Not long before she got sick, she decided to go back to school for a master’s to become a teacher. Soon after graduating, she moved from Southern California to Seattle, where she had always hoped to live, and began teaching grade school.  Then, suddenly, at 35, she began experiencing symptoms like extreme fatigue, blurred vision, and headaches. She was speaking so quietly that I could barely make her words out. It was so strange that I encouraged her to get an MRI. A few months after her symptoms began, she finally went in and got the scan following an odd, minor accident where she drove slowly into a parked car in a neighboring driveway. The MRI showed a large mass in her brain just behind her left eye.

Within hours, she was admitted to the ICU at the University of Washington Medical Center. The tumor was pushing against her optic nerve. It had developed into such a great mass that it forced her brain to shift out of place. She had lost vision in her left periphery. 

The very next morning, I woke up to learn that Shayna was in the ICU awaiting brain surgery. The news was utterly shocking. Without thinking, I booked my ticket from New York City to Seattle for that afternoon. 

Shayna underwent emergency brain surgery the next day. The surgeons successfully removed a portion of the tumor, but the rest was embedded within critical brain tissue. Complete resection would put Shayna at a high risk of paralysis and loss of speech and function, rendering the remaining mass inoperable.

Caring for Shayna

Once we knew her glioblastoma diagnosis, I traveled from NYC to Seattle nearly every other week. I would get on a plane after work, fly to Seattle, spend two or three days with Shayna, and then take a red-eye flight back and go straight to the artist’s studio where I worked in the morning. It was extremely challenging, both personally and financially.

Shayna connected with a friend around her age with glioblastoma through Facebook, and he brought up the National Brain Tumor Society’s Head to the Hill event. In May 2018, Shayna and I registered and booked our travel accommodations to attend together, but unfortunately, she was too debilitated from her most recent round of chemo, and we ultimately had to make the tough decision to cancel our trip. Shayna was so eager to advocate for brain tumor awareness and resources. It was hard to see her disappointment that we wouldn’t be able to participate.

After about a year and a half of back-and-forth travel, I left my job and went to live with Shayna to become a full-time caretaker for her. She died four months later.

I was there as Shayna’s body shut down. It was like hell to watch. That winter, Seattle saw more snow than it had in half a century. It was cold and dark. I spent hours just lying there with her, holding her hand. Time didn’t seem to exist then. 

She had seizures and would struggle to keep her food down. It was terrible, but I wouldn’t change that I was there. I know Shayna felt safe with me and wanted me there beside her. And the fact is that given the reality of the circumstances at the time, I felt most safe right there with her, as well. I’m so glad we were there for each other.

Processing My Grief

It was a horrible, destabilizing experience losing Shayna. Not only did I lose my big sis who looked so much like me, but I was facing my own mortality. When I got back to New York, I really leaned into art and kickboxing. It’s such a rigorous workout, and, to be honest, all of that extreme punching and kicking helped me a lot.

I started using clay after Shayna died. The physical nature of sculpting the clay, derived from the earth, and working it in my hands was a really cathartic way to process the feelings of sadness, loss, helplessness, and anger. 

Chelsea made this painting in 2020.

I’ve always wanted to paint but was never trained as a painter. I always let that stop me from picking up a paintbrush. But after this loss, I was compelled to. I found relief and connection in the way I could move the paint across the canvas, and the way figures and symbols emerged. It was a process I could control but also completely lose myself in. To fully engage in the creative process without having any expectations of an outcome was transformative. It allowed me to move through my emotions without judgment or intention beyond the present moment.

Sometimes, it feels like her illness and death happened yesterday, and I’m still in it. Grief is an evolving process, and I’ve found truth in the adage that it comes in waves.

There’s a poem by Nayyirah Waheed that I think about a lot: “Grieve. So that you can be free to feel something else.” I’ve worked very hard to let the emotions wash through me, not to attempt to erase or undo them but to process them so that I can move forward.

I know that the default for some can be to turn away from difficult things. But in doing so, I feel that we deny the truth of life — that as we live, we will all someday die. If the practicalities of illness, death, and grief were more integrated into our teachings, going through an experience like this might be a little less isolating and destabilizing. We might even find ourselves somewhat prepared for and accepting of the process and even find some beauty in it. The closeness and connectedness I felt with Shayna during her illness was unparalleled. For that, I am utterly grateful.

Changing My Career

When I returned to NYC after Shayna’s death, it took me about six months to secure a job in the arts, even with my past experience. This period was financially exasperating, but it also afforded me time to realize that being there for Shayna was the most meaningful thing I think I’ll ever do, and that I wanted to get closer to that feeling of deep, meaningful connection in my everyday work. 

I’m now pursuing a second master’s degree — this time in social work through a two-year program. I see this not as a career change but a career pivot. Ultimately, I hope to pursue private practice and engage with individuals, groups, and families going through bereavement and end-of-life. I feel like I have a lot to offer in that context and that there is a mutual sense of meaning in that work.

Joining Gray Nation Endurance®

Supporting NBTS was important to Shayna, and it was one of the last causes she wanted to dedicate energy to. I wanted to do something in Shayna’s memory. I thought about Head to the Hill, but public speaking can be intimidating for me, especially as I am still so close to her death, so I didn’t feel like that was right for me at the time. 

I started running again when Shayna became sick, and it, too, has helped me through my grief. I have always thought about how healing running is. When I learned about the opportunity to run a marathon as a member of NBTS’s Gray Nation Endurance team, it seemed like the best way to support this cause in her memory and honor. The distance also seemed like an appropriate metaphor for the experience we went through.

There is a book called “The Body Keeps the Score: Brain, Mind, and Body in the Healing of Trauma.” In it, the author Bessel van der Kolk describes that your heart rate variability is a measure of your body’s ability to process and transform trauma. Looking through this lens, I came up with the idea to record my heart rate while I ran the marathon so that someday, music can be made with it. I hope to use the heart rate data and one day turn it into music, which could be played by others impacted by brain cancer. This project could be a way to collectively articulate experiences around illness, grief, and death in a creative way.

On November 5, 2023, I ran the TCS New York City Marathon in my sister’s memory. I trained for five months, and the process was rigorous, exhausting, and transformational. I look forward to bringing my musical project to life in the future.

Become a Gray Nation Endurance Athlete

Gray Nation Endurance is the official endurance program of the National Brain Tumor Society. Whether you run, ride, swim, hike, or paddle for NBTS, you can put meaning behind your miles to celebrate a survivor, pay tribute to a loved one, or make a difference on behalf of the brain tumor community. Join NBTS and individuals like Chelsea around the country by applying for a charity team or selecting a race or endurance activity of your choice.

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