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READ MOREPublished on May 22, 2024 in Survivor
Chaka C. went to sign a guestbook at a friend’s wedding, but she could only manage scribbles instead of her signature. Alarmed, she soon realized the gravity of being unable to write her own name.
Her difficulty writing, coupled with months of other symptoms, ultimately convinced Chaka to go to the emergency room that evening. The MRI revealed a mass the size of an orange.
“I didn’t really think of much,” Chaka said of her reaction to the mass. “I was just kind of blank. I didn’t have any feelings. I deteriorated pretty quickly. Things weren’t making sense, and I slept a lot.”
Six days later, in August 2019, Chaka underwent surgery. Leaving the hospital 48 hours later, she looked markedly different, her head swollen and adorned with 40 staples.
“I looked terrible,” Chaka said. “I can laugh about it now. When they shaved my head, they didn’t care how they did it, so there were chunks of hair, and it was so bad.”
Two months after surgery, Chaka began radiation as part of her meningioma treatment. She noticed heightened anxiety while wearing a radiation mask bolted to the table during her treatment sessions.
“I wanted to teach at the gym after my radiation sessions, so I couldn’t take anything for anxiety,” Chaka explained. “What could I do? I used grounding techniques because I was freaking out the first couple of times. I took time to feel where my body was and how it felt on the table each time. It made a big difference.”
Unfortunately, Chaka came down with stroke-like migraine attacks after radiation therapy (SMART) syndrome — a rare reaction to radiation of the brain — one year after completing radiation and three weeks into starting a new job in January 2021. It added another layer of complexity to her recovery.
Returning to work as a licensed child psychologist in North Carolina with more than 20 years of experience proved daunting. Word-finding difficulties became a significant hurdle, impacting her professional interactions. Before returning to work, Chaka underwent a full speech evaluation to ensure she could provide excellent care for her patients.
“I was traumatized returning to work,” Chaka shared. “I remember the psychiatrist coming up to me when I returned to work, and she was telling me all these things that I needed to do. I was like a deer in headlights. No one except my immediate supervisor and the director knew I had gone through this.”
Navigating her return to work was challenging due to her word-finding difficulties. Struggling to find a word is analogous to when someone knows the person’s name, but can’t think of it in the moment.
“I’ve improved with word finding, but I haven’t been able to get back to my old self,” Chaka explained. “I’m afraid of saying the wrong word. What if it’s not the right word, or I say it wrong?”
“The journey doesn’t end when surgery is over and your head is healed or when radiation is over and your hair has grown back,” Chaka shared. “So many people have gone through a traumatic experience physically and emotionally. I didn’t realize how much I’d been through until it was ‘over,’ and I was just left processing it. Even if your body has healed, emotionally, you may not have been completely healed.”
Today, Chaka continues to battle fatigue while juggling her responsibilities as a mother and a professional. In fall 2023, she started her own practice to give her greater flexibility with her three boys — ages 10, 15, and 18 — while allowing her to approach work on her own terms.
“I still have fatigue every day,” Chaka said. “I try not to say I’m tired all the time because I feel like a broken record in front of my kids. I frequently remind myself of a saying I came up with, ‘Give yourself a little grace, as we are all living this life for the very first time.’”
Her experience underscores the crucial role of mental health support in the recovery journey.
“Ideally, it would be great if mental health was seen as an essential part of the medical treatment team,” Chaka said. “During my whole process, I didn’t have one professional check to see if I was okay. That shouldn’t happen. Mental health is just as important as physical health for quality of life.”
Last fall, Chaka stumbled across NBTS’s profile about Melanie F., who had similar hair loss from radiation, and Chaka found solace in their shared experiences.
“It was meaningful to see a photo of someone whose hair loss looked like mine,” Chaka said. “You don’t know someone else had this experience with their hair.”
Chaka hopes sharing her story will help others feel seen and understood.
“Being a psychologist doesn’t make me immune to anxiety or having to use my own tools to get through something tough,” Chaka said. “I may have some more things in my toolkit, but we go through the same thing.”
TAGGED WITH: meningioma