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READ MOREPublished on March 19, 2024 in CommunityEOY, Educational Resources
Christina C. turned to writing poetry moments after receiving her grade 3 anaplastic astrocytoma diagnosis to try to process the whirlwind of emotions. This form of creative expression helped sustain her when she couldn’t sleep and as she underwent surgery, fertility preservation, and treatment.
“While I was sitting in the emergency room on August 4, 2020, I wrote a poem to help me cope with the image of my brain that I kept seeing,” Christina shared. “It was a way for me to understand and cognitively restructure the news I was receiving. I kept writing poems on my phone, in notebooks, on my computer.”
Creative expression can be an important form of self-care during and after brain tumor treatment. Finding moments of joy, purpose, and personal fulfillment through art and other forms of creativity can contribute to improved quality of life. Creative activities can take many forms, including formal art therapy, peer-led workshops or groups, or self-directed art.
“There’s something about making art, music, or writing that brings us all back to our childlike self — the core of who we are — and that’s incredibly calming and soothing,” said Amy Van Cleve, Art for Recovery Program Director at the University of California San Francisco (UCSF).
In art therapy, a trained and licensed art therapist leads the sessions. They also structure these sessions to meet the individual needs and goals of the participants and achieve specific therapeutic outcomes. Art therapy is often integrated into the overall treatment plan in collaboration with other health care professionals and is a billable expense. Patients can contact their insurance carrier to fully understand their coverage.
Self-directed or peer-led creative expression occurs without a trained therapist guiding patients. A peer leader or facilitator may help coach individuals throughout the session, typically teaching people how to engage in that art form; however, they do so without the education to qualify it as formal art therapy.
Creative expression can benefit patients with brain tumors and their caregivers in a variety of ways.
Creative activities can serve as a stress-relieving outlet, helping patients and caregivers manage the emotional toll of medical treatments, uncertainties, and responsibilities.
“We have a lot of data that actually shows that these types of creative programs, even peer-led, decrease feelings of anxiety, depression, psychological distress, and loneliness,” said Mallory Casperson, former brain tumor caregiver, cancer survivor, and CEO of Cactus Cancer Society. “Just coming to a workshop for two hours and using your hands and chatting with other people helps all of those quality of life burdens that we see very prevalent within the young adult community. When we talk about a cancer experience, I think it helps people feel less anxious, less depressed, and less lonely. It also offers this very often tactile ability to express oneself, whether they’re physically writing or putting together a craft or an art. I think the permission to process something external to oneself is just so helpful and life-giving.”
Art can serve as a channel for expressing complex emotions that come with a brain tumor diagnosis. It can encourage self-reflection and help patients and caregivers gain insights into their own thoughts, feelings, and coping mechanisms.
“Art making is like this other language for people that maybe they didn’t have before, where they can talk about what’s going on without actually talking about what’s going on,” Amy explained. “They can almost displace the trauma or the thing that they’re going through onto, we’ll just say, the object of a red balloon that they paint on a piece of paper. They talk about the red balloon and maybe they pop the red balloon, but they’re actually talking about their own experience, and they’re sharing it with another person. It’s incredibly intimate and also not threatening.”
Patients with speech and language difficulties may struggle to communicate. Creative activities can offer patients a way to use their voices without speaking.
“We had a patient a few years back who got a brain tumor,” Amy said. “Pre-cancer, she was a public speaker. She was an author. With where the tumor was on her brain, she lost the ability to speak. That element was so traumatic for her. Our program became the only space that she could show up. She didn’t have to talk. She let her painting talk. She couldn’t write these long speeches anymore, but she could write a few words. She could reclaim her voice in a way, and that was really profound.”
Creative expression provides a sense of empowerment and agency. For patients with brain tumors, who may often feel a lack of control due to their medical condition, engaging in creative activities allows them to take charge.
“When someone becomes a patient, they kind of lose all autonomy,” Amy explained. “They become a patient number, they become a diagnosis, they lose their jobs, and often they lose their communities. That need to be seen and heard as a whole person becomes very urgent and really important to the patient’s well-being, mentally and physically. Often, patients feel like they don’t have a voice in their story and their lives anymore. Art is this gentle way for them to sit down and maybe non-verbally tell their story and retell their narrative, re-own their narrative a little bit, and let the world know this is also happening inside of me as a person.”
When Kymberlee B. had to stop working, she had to look for a way to take back control.
“In art therapy, I started to make encouragement cards,” Kymberlee shared. “These elaborate cards contain supportive and uplifting messages that can be given to the brain tumor community. This passion allows me to give back and share hope and joy with others at a time when they really need it. Plus, it provides me with a sense of purpose.”
In a peer-led group, creative expression can cultivate a sense of community and provide peer support, allowing individuals to share their experiences and learn from one another.
“Even if you have a lot of friends, you have a big family, and you have a great medical team, there is something so isolating about being diagnosed with an illness,” Amy said. “Only other people who are also diagnosed with an illness can understand what you’re feeling. To be in a community of people who are in a way in your shoes, and you’re doing an activity together — it doesn’t have to be telling your life story and a piece of art — is really important to people.”
Creating together without talking about your diagnosis can be quite meaningful.
“If we wanted to get young adults connected to one another to try to fix these huge issues of isolation and do really great creative coping activities at the same time, it needed to be online,” said Mallory of how Cactus Cancer Society supports young adult cancer survivors through creative expression. “We now have about 20 [virtual] programs really all focused on creative outlets in different ways.”
Many grieving community members have found solace in their creative pursuits after the passing of a loved one.
“I’ve always wanted to paint but was never trained as a painter,” shared Chelsea K. “I always let that stop me from picking up a paintbrush. But after [my sister died], 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.”
Within a year of her brother’s passing from glioblastoma, Pat S. serendipitously stumbled upon a Southwestern tin punching class at her local senior center. Tin punching involves using a hammer and nail or awl to punch decorative indentations into the tin and cut out the desired design. Pat creates dragonflies, angels, tin boxes, frames, and ornaments that take anywhere from one hour to 10 hours to create. Today, she socializes with friends at the same weekly class to punch tin and collaborate.
“Giving form and function to a flat piece of tin or a wad of clay is very gratifying,” Pat explained. “I love seeing a flat piece of tin being punched, pounded, and formed into a beautiful piece of artwork. I look at this as a metaphor for life — all the punches, poundings, and stresses we face in life can turn us into a piece of work or a piece of artwork. It’s our choice.”
Pat’s creations grew in popularity and she now sells them at local art craft shows, with the proceeds benefiting the National Brain Tumor Society. In 2023 alone, she donated $4,400 to NBTS in her brother’s memory.
“My brother used to encourage me to do my arts and crafts,” Pat said. “When I decided to retire, I wanted to still have a purpose. Supporting NBTS and directing the proceeds of my hobbies to glioblastoma research for better treatments and therapies will hopefully one day prevent another sister from losing her hero. I initially saw fundraising for cancer as only 5Ks, 10Ks, benefits, and raffles. Having NBTS recognize selling my artwork as a fundraiser, I am grateful that I can create a lasting legacy in my beloved brother’s memory both with my art and the money it raises.”
Finding a form of creative expression that meshes with your personality, interests, and circumstances can take some exploration and a willingness to experiment.
“I was a very busy graduate student, so if I wasn’t in the lab working, I was usually running or out with friends,” Mallory said of her life before cancer. “All of a sudden, I had all of this time where I needed to literally sit in a chair or rest, and I didn’t know what to do with myself. I needed calm activities that were grounding and still made me feel like I was using my brain and expressing myself.”
Here are some steps to help identify your creative outlet:
What activities or hobbies have brought you joy and satisfaction in the past? These interests can include visual arts, writing, music, dance, gardening, cooking, and more.
Amy shared, “I love listening to their story and pulling from what they say to be like, ‘Oh, you’ve been hiking for 40 years of your life? What if you brought your camera on the hike with you? What if you told your story but through the lens of your camera?’”
Experiment with different mediums or forms to see what resonates with you. You might try doodling, journaling, watercolors, or a simple craft at home.
“I just think that creative coping doesn’t have to be big,” Mallory said. “You can start small, like even a color-by-number book. There are lots of different ways to sort of feel creative and even meditative while doing some of these things. If you just need something to do with your hands and sort of get out of your body a little bit, there are such easy low-cost ways to do it at home. Most people have markers or pens, so it doesn’t have to be complicated — whatever feels good at the time. If it stops feeling good, try something else.”
Patients with brain cancer can request a complimentary HOPE kit with art materials to get started.
“I always like to start people when they’re brand new to our program with a self-portrait,” Amy explained. “It sounds like the scariest thing in the world, but it’s not a literal self-portrait. It could be going through a magazine and tearing out images that represent you. It could be tearing out all the paint colors that represent you from a paint deck. It could be a quote. I think the self-portrait is a really great project to revisit with patients six months down the road or every year because their whole identity is shifting tremendously in this experience.”
Your tumor location and surgery and treatment side effects may affect motor or language skills. If fine motor skills are a challenge, for example, explore activities that are adaptable to your needs, such as using larger brushes to paint, or engaging in creative expression that requires less precision. Digital art or creative writing on a computer or tablet may be a better option, depending on your circumstances.
Attending local or virtual workshops or classes through The Creative Center, Art for Recovery, Cactus Cancer Society, your local health system, or a nearby recreation center can introduce you to different ways of creatively expressing yourself.
“I think the art workshops are probably the easiest to get into,” Mallory shared. “The stakes are low; it’s a single two-hour experience. You’ll get to meet a lot of great [people] who totally understand, and you’ll get a fun, creative craft out of it. You’re allowed to not be good at it. It’s just figuring out where it feels least uncomfortable is probably the way to go, and there’s no right or wrong way to be creative.”
Activities like coloring, meditation, yoga, or simple repetitive movements such as knitting or building Legos can provide a sense of calm and focus.
Connect with in-person or virtual creative groups specifically tailored for patients with brain tumors or cancer. Options include Art for Recovery, Cactus Cancer Society, and Kits to Heart’s Art for Cancer Wellness program.
“A lot of our programs are very designed to sort of allow the survivor to process something however they like and not expect others to sort of dig into it and need an explanation,” Mallory said. “In that way, I think it’s very freeing because you’re sitting with these peers who understand what you’re going through, but you also get to process and really get something out of your own body and out into the world.”
Sometimes, it just takes hearing a fellow brain tumor community member talk about their creative outlet to spark ideas within you. Learn how other patients and caregivers express themselves creatively.
Writing can be a powerful and therapeutic form of creative expression for people living with a brain tumor and their care partners. Consider the different ways you can write:
“Writing is really the best way for me to process the firehose of feelings these days,” shared Christina P., whose husband has glioblastoma. “Some of it is plain old journaling. Some of it is working on a specific issue — like trying to figure out on paper why something (or someone) is bothering me or identifying what’s making me feel blah, off-balance, or down. The act of writing allows me to gain insight while also giving me perspective. It’s like I have to go deeper into the matter until I emerge on the other side of it. After writing about something, I don’t feel like I’m so tangled up or consumed by it. I have better clarity and peace about what I feel and why. Gaining that clarity calms the emotional waters and (usually) gives me a sense of peace. Once I’m through the rapids, I’m on to smoother sailing again.”
Before her glioblastoma diagnosis, Lynn O. worked in the newspaper business on the financial side for 30 years. Since the pandemic began, she has joined a weekly memoir-writing group to record her life experiences that she will ultimately share with her two kids.
“There’s so much importance in Lynn attending the workshop besides the fact that she feels amazing,” Lynn’s husband, Larry, shared. “She could tell her story, which is really important.”
While meditation and yoga may not involve traditional artistic creation, these activities offer unique opportunities for self-expression and self-discovery, contributing to overall well-being.
“I always tell my students, ‘It doesn’t matter what your neighbor is doing,’” said Melanie F., a patient and 10-year yoga teacher. “I encourage them to close their eyes, move freely, and give them the option to edit the flow to suit their body [and] needs. This moment is where creativity is unleashed, and the dance between your body and breath is heightened.”
Having taught yoga for years, Melanie returned to yoga as soon as she could after undergoing treatment for diffuse astrocytoma. Yoga created a safe space for Melanie to process her feelings.
“My mat has been a space for me to fall apart and rise with power and intention,” Melanie shared. “My mat gives me the opportunity to sit with feelings, acknowledge them, and send them on their way. It’s also a space where I’m able to turn off my brain and just be. You decide to keep what you need and let go of what you don’t.”
If you are new to yoga, beginner classes are available in a variety of formats. Many treatment centers offer yoga and other wellness classes at no cost, so it’s worth checking to see if your health system offers classes.
“This will allow you to find the style that works best for you,” Melanie explained. “Once you’re in class, focus on yourself and your breath. This class is a safe space for discovery — check your ego at the door. You’ll learn the postures and language with time.”
If you would like to try meditation but aren’t sure where to start, attend NBTS’s Meditation Mondays on the second Monday of each month for meditation designed specifically for patients with brain tumors and their loved ones.
Lynn began Israeli dancing in 1989 and continues to dance alongside the same individuals she started dancing with more than 30 years ago. Dancing with her five-pound Optune device in a backpack is challenging, so they change arrays on the days she dances.
“Dancing for me is meditation because I can forget everything,” Lynn explained. “I just dance and have a good time. I also enjoy the camaraderie with the other dancers. Some of us have been dancing together off and on for at least 20-30 years.”
Steven B., co-chair of the National Brain Tumor Ride and teacher of pottery, used this art form to help him work through his grief after the death of his 23-year-old son.
“A week after Jared passed away, I went into the studio because that was always a comfortable place for me,” Steven shared in his documentary A Father’s Kaddish. “It’s where Jared worked and made his final pots, and it’s where we shared a lot.”
Taylor G., who has glioblastoma, uses woodworking to create a distraction while also bringing in an income.
“When they find something unsettling on a scan, I try to put all my effort and focus into either my woodworking business or watching my kids do gymnastics or jazz dance,” Taylor explained. “If I don’t have anything I’m working on, I’ll just go out and start cutting wood because it’s a good stress reliever to cut things. Occasionally, it’s hard to keep the thoughts out of your mind like, ‘What if it comes back?’ I just try not to think about it and stay busy.”
Have you turned to a creative outlet to help you navigate your brain tumor experience? Whether you paint, write, make pottery, woodwork, dance, sing, play an instrument, crochet, build Legos, take photos, create jewelry, or enjoy another form of creative expression, we want to see it and learn about your process!
TAGGED WITH: brain cancer, brain tumor, Art
