The story of a young woman’s struggle with a past she is forbidden to share.
Imagine your parents hiding the fact that you were adopted, or that one of your parents is not related to you. Visualize them not telling you about a sibling who died at a young age. What would your parents do if you told other people about their secrets? Or are they your secrets to tell?
Six years ago a concerned doctor in Redding, California walked in an exam room decorated with children’s drawings, while a mom fidgeted nervously in her chair. Thirteen-year-old Caitlin Smith* listened as the doctor listed a series of tests to check for the tumor that had just developed in her brain. He kept saying, “Based on your history of tumors,” and she kept thinking, what history?
When the doctor left the room, her mom quickly explained that she had been born with a malignant brain tumor, and was in St. Jude Children’s Research Hospital for two years when she was a baby. Caitlin’s first instinct wasn’t anger about being left in the dark- it was disbelief that something had ever been wrong with her. All she remembered was her mom kept repeating, “You didn’t go through this, we did, and there’s no point in dwelling in the past now.” Unlike many teens, Caitlin didn’t immediately rebel at being lied to for so many years, at least not yet.
Today, Caitlin is a sophomore in college. The second tumor they found was benign, but it continues to push on her optic nerve making her partially blind in one eye. Doctors thought it was too risky of a surgery to remove a benign tumor, but Caitlin still goes to regular scans and check ups. After years of secrecy, she acknowledges the importance of that early part of her life, and indirectly the fact that it should be her story to tell.
“I still don’t understand why they wanted to keep it a secret, but I do understand that I need to respect their wishes,” she says. “At the same time, even if I don’t remember it, it was still an important part of my life.”
No one in Caitlin’s hometown ever found out about her story, even her younger sister doesn’t know. While the secrecy makes her family seem very distant from each other, Caitlin insists they are usually very open about things. That is, until she entertained the idea of getting a tattoo. “My mom basically said they would not continue to pay for my college if I got a tattoo. She just doesn’t want me to get something I might regret.”
It was this same fear of upsetting her parents and being cut off that made Caitlin feel the need to respect her parent’s wishes and not tell anyone about her past with cancer. “They are supporting me right now, so I understand that I have to obey them,” she says. “They have said before that they were afraid I would rebel and disrespect their wishes when I came to college.” The threat of rebellion still haunts her parents, and their control of her life decisions could be seen as a manipulative tactic to make sure she doesn’t spill their secret- even if it’s hers to tell.
Caitlin’s current roommate, Allison Johnson*, found out about her past when they both joined the same sorority.
Allison understands why Caitlin didn’t want people in her hometown to find out about her story. “She was the conductor of the band in her high school and everyone knew her, and she didn’t want that to change what people thought of her or how they treated her,” Allison says.
Caitlin’s parents’ secrecy about her experience at St. Jude hasn’t stopped her from reaching out in other ways. She volunteered for several organizations in high school, and continues to do everything she can to raise money for St. Jude Children’s Research Hospital.
“I try to give back in other ways as a way of recognizing what happened to me. It’s mainly affected my outlook on people and how I connect with others,” says Caitlin.
After watching the eight-year-old girl she babysat pass away from bone cancer in her hometown, Caitlin says those experiences affected her more than her own experience and helped her understand how her parents must have felt. As she told the tragic story about the young girl she babysat, Caitlin’s bubbly demeanor remained the same.
“One of the qualities that my parents had that I’m glad I also have is the ability to just get over it, and that’s always been a personal thing for me not to dwell on things,” says Caitlin, proud of her positivity.
Allison, on the other hand, remains curious about the reasoning behind Caitlin’s parents’ need for ownership over the secret.
“I don’t understand why I can’t say anything about what I know to her parents, but I still won’t tell them I know,” Allison admits. “It’s a very interesting dynamic. I can tell that they are the sort of parents that aren’t friends with their kids, they are the parents.”
Caitlin reiterated that she grew up learning to not dwell in the past. “The way that I was raised is just to move on from things that happened in the past and just put a smile on and be thankful that it’s over now,” she says bluntly.
As one of the few people besides her parents that know about her history, Allison disagrees with Caitlin’s idea that acknowledging the past would just be a way of complaining. And also another way for her parents to reinforce her secrecy.
“She’s been conditioned to think that telling someone about this experience is like rolling out the pity parade, but I think her experience is something that should be dealt with emotionally,” she says.
Allison continues to support Caitlin by taking her to regular scans and check-ups for her benign tumor, but she thinks that Caitlin is too afraid to use her story to help others.
“If she wasn’t so worried about being pitied, I think her story could help her inspire others and increase outreach for St. Jude,” Allison says.
Whether she’s afraid of attention from others or disobeying her parents, Caitlin says she regrets telling other girls in her sorority about being a patient at St. Jude. The prolonged secrecy has taken a toll on Caitlin’s friendships, and could even result in rebellion and rejection from her family altogether.
She remains suppressed by her parents from talking about an important chapter from the beginning of her life, not just her parents’ life. The benign tumor in her brain continues to obscure her vision as a constant reminder of a past she should be able to share.
*Names have been changed to protect the identities of both sources.