Sara: path to stillness

A Grinding Halt

At 35, Sara had a meaningful and fulfilling career, a committed relationship, and close connections with family and friends. She spent her time going to the theatre, playing boardgames, and serving on the board of directors for a Calgary music festival. She also enjoyed adventurous travel to new places, like a trip to Costa Rica in November 2022, where she saw sloths and monkeys in the wild, snorkeled off black sand shores, and ziplined above the forests.

Just one week after returning home from Costa Rica, Sara was catching up on work in the office when she had a grand mal seizure that knocked her unconscious. She was taken to the hospital, where there were tests and scans, and then the jolting news, the flash that transported her to an entirely new reality.

“I was diagnosed with brain cancer – a rare type called oligodendroglioma,” said Sara. “I actually avoided learning the name of it at first, because I didn’t want to be able to Google it. I knew I wouldn’t be able to resist, and I didn’t want to know how bad it was.”

In the days that followed, Sara had a cluster of seizures in the hospital that left doctors scrambling to find just the right combination of drugs to curb the violent uncontrolled electrical currents that flooded her brain. Once the seizures ceased, Sara was partially paralyzed, relying on nurses, as well as her family and partner, for help with the most basic tasks, like showering, standing, and eventually taking hesitant steps with a walker.

“When I left the hospital, I was on three different anti-seizure medications, and very hopeful that the drugs had the seizures under control – that they were a one-off, and I wouldn’t have another,” she said.

At any moment

But 39 days later, she did have another, and then another, and another — a total of seven over the months following her initial hospitalization. Each time, her medication dose was increased, or a new medication was added. It took eight months to find the right combination of medications — four different anti-seizure medications and 17 pills a day — to finally stop them.

“Having seizures was terrifying. I tried desperately to see what was causing them, what led up to them, trying to connect the dots, but there was nothing that I could find. They could happen at any moment, so I was afraid all the time. It came to a point where I was scared to even say the word — referring to them instead as ‘incidents’ — because of a fear that simply speaking the word ‘seizure’ would trigger one,” said Sara.

Treatment commenced in March 2023, including six weeks of radiation (30 sessions in total), and 11 months of oral chemotherapy (60 doses in total). Sara’s parents took her to all her radiation appointments, and her mom cooked her meals to ensure she was eating healthy food while struggling with side effects of treatment. Friends and family rallied around her, surrounding her with love and support.

“Because of the cancer and the seizures, I was unable to work, drive, or even walk long distances. The isolation and the complete and sudden loss of my independence was really hard for me,” she said. “Amidst all of this, I was also trying to mentally and emotionally cope with the fact that I had an incurable disease. It was a very dark time.”

Wellspring for two

The day Sara and her mom walked through the doors of Wellspring’s Carma House, Sara felt nervous and unsure. She had taken her time getting there, feeling she would know when the time was right to come out of her cocoon and be around others who also have cancer.

“Almost as soon as we entered, I felt better. Everyone was so friendly and caring. We got a tour of Carma House and every employee and volunteer stopped what they were doing to say hi and welcome us,” Sara said. “It felt like such a warm and wonderful place where the people were kind, there were comfortable chairs to curl up in, and there was always a new baked good in the kitchen to enjoy.”

In the weeks that followed, Sara and her mom both signed up for programs. Sara chose to take “baby steps,” beginning with just one online program. Eventually she found she had many hours to fill between treatments and not working, so she began taking both online and in-person programs. When she felt totally at home and was enjoying the comfort and familiarity of Wellspring, she explored parts of herself she had never experienced, sampling such programs as Still Life Sketching, Self Portrait Painting, Art and Folded Books, and one of her favourites, Sketchy Creative Writing.

“After years of working in a professional environment, the feeling of having creativity in my life had slipped away, but at Wellspring I rediscovered my creative spirit. I tried things I never would have tried before,” said Sara.

Along with tapping her creative side, Sara sought educational enrichment, joining Brain Fog, Money Matters, Returning to Work, and Making a Plan with Cancer in Mind. She sampled Reiki, Drumming, and Sound Meditation, as well as Living Well with Cancer and Mindful Self Compassion. Her mom took caregiving programs, and the two signed up and took some programs together. The bond they had before cancer grew and blossomed – an unexpected gift of a tumultuous journey.

One of the programs Sara highlighted is Money Matters. She found it extremely helpful, and said that based on its title, the program was not what she was expecting.

“At first I thought Money Matters wasn’t really for me because I thought it was about how to manage your finances. I didn’t realize all the other ways this program can help you – especially in my case with accessing and relying on disability insurance,” said Sara. “The Money Matters leader provided very clear guidance on how to communicate with my insurance company and my employer. This was so helpful. She even helped prepare me for a conversation with my insurance case manager.”

Conquering the fear  

Perhaps Sara’s most impactful experience at Wellspring unfolded when she took a program that invites members to create a short film about a meaningful experience in their lives. The program, Digital Storytelling led by Melody Williamson, was a gamechanger for Sara in conquering her fear of seizures.

“With Digital Storytelling, I went from not being able to even say the word, to creating an entire video about having seizures. I recreated the feeling of having a seizure through thunderstorms, eyes darting around in fear, and a dizzying staircase. Sitting at my computer, sifting through images, writing the script, and editing my voiceover, I really dug deep into it, which took away a lot of the fear. It was really very powerful,” she said. [View Sara’s video]

Reclaiming an unfinished life

“As I’m coming up on the two-year anniversary of my diagnosis, I’m aware that there are a lot of things I can’t do because of cancer, but I’ve been trying to focus on the things I can do, and I realized that a lot of the positive experiences I’ve had are because of Wellspring. In fact, Wellspring has been so good to me, I consider myself a lifetime member.“

At Wellspring, we don’t just sit around and talk about having cancer; we talk about the art we are working on, or the goals we’re setting for the future, or other things going on in our lives. You find the kind of warm gentle support you need, and you get the opportunity to try new things you’ve never done if you open yourself up to the experience,” she said.