The Secret She Never Knew
By Athena Aktipis
It was my brother who told me.
“Mom is dead,” he said. I was 18 years old, standing in my dorm room at Reed College, looking out the window at the blinking red radio towers in the distance. The words had left my brother’s dorm room at Northwestern encoded as 0s and 1s, bounced from cell tower to cell tower, making their way across the United States and to me in my dorm room. The words entered my brain, but they didn’t register. Blink, blink, blink went the red lights in the distance. I couldn’t process what he was saying. It couldn’t be true.
My brother said it was suicide. He was only 16, about to turn 17. He was a freshman in college (an overachiever, multiple-grade skipper), and I was a sophomore. We had just spent the holidays with her a few weeks earlier. We were both very close with her, and neither of us saw this coming.
Yes, she had been depressed, had just gone through a difficult divorce with my dad, just experienced me and my brother leaving the nest after spending almost two decades focusing her energies on taking care of us. But suicide?
She had overdosed on pills and sat in the garage with the car running. The scene told that she had wanted to be double sure, but maybe she had a last minute change of heart. She had gotten out of the car, presumably to call for help, and wasn’t able to escape the lethal garage.
Suicide. Depression. This was the story of her death, the one-two punch that landed with unquestioned clarity. It was so powerful that I didn’t think to doubt it. The pills she overdosed on were her antidepressants. The means themselves seemed to be an indictment of her mental health. Those of us who were close to her knew that she had struggled with depression for decades. Why would we question this narrative of her death?
And then I started writing my book.
This was about two years ago. The book was about evolution and cancer, and a friend (who is also a talented scientific editor) suggested that I write about how cancer has touched my life. On her urging, I started thinking about how my personal story intersected with cancer. My first thought was that I was extremely lucky—that nobody close to me had struggled with cancer. Then, a flicker. Something floated up from my subconscious: my mom’s autopsy report.
“It is amazing how we can take the most important events and pivotal facts and bury them under layers of avoidance and taboo.”
The post-mortem examination found cancer in her thyroid. I had previously dismissed this seemingly little fact as irrelevant to her death. It is amazing how we can take the most important events and pivotal facts and bury them under layers of avoidance and taboo.
Suicide. Mental illness.
These words in the aftermath of my mom’s death kept me from talking about and even really thinking about the circumstances surrounding her death. In the days following her death, I remember thinking that she must not have known that she had cancer when she took her own life. I remember being grateful for this—grateful that she didn’t have to suffer with cancer during her life. It was a small consolation during an impossibly hard time.
But the truth is that she knew she had cancer. It was me and my brother who didn’t know. She told nobody in her family, and none of her friends. Except one.
R was my mom’s confidant and a close family friend. He was the person my mom trusted most. I called R when I started questioning the story of my mom’s death.
Did she know about the cancer?, I asked. Yes, of course she did, he told me. Did it play a role in her decision to take her life? A central role, he said. Why didn’t you tell me back then?, I implored. I didn’t know you didn’t know, he said.
R told me that my mom had been diagnosed with terminal cancer. It wasn’t thyroid cancer; the thyroid tumors found in the autopsy were metastases from the primary cancer. The autopsy was not thorough, R explained, so they didn’t find the primary tumor. What kind of cancer was it? R said he wasn’t sure, maybe pancreatic.
But this was sure: It was terminal, untreatable and terrible. So terrible that she didn’t want to share it with anybody other than R. And she didn’t want to tell me and my brother. She didn’t want to worry us or burden us. She thought that by keeping it hidden she would somehow protect us from it.
R was the executor of my mom’s estate. In the time leading up to her death, she was working to make arrangements so that my brother and I would be able to pay for college. She knew what she was doing, R told me. She was trying to take care of you and your brother, she wanted to make sure that you were okay when she died, he said.
My mom had dedicated 18 years of her life to me and my brother. Her greatest fear was that her cancer treatment—and our desire to help her and be with her—would reverse that caretaking role and derail our fast-tracked lives. To this day, I can’t fathom that she thought it would be better to commit suicide without telling us what was going on. But according to R, she kept her cancer a secret from my brother and me because she didn’t want to burden us.
“I thought that I was extremely lucky…Then, a flicker. Something floated up from my subconscious: my mom’s autopsy report.”
In the vacuum that this secret created, another narrative took hold. For 18 years, I had believed that she committed suicide because of depression. That it was mental illness that led her there. If it weren’t for my writing about cancer, I might have lived my entire life without knowing that she struggled with cancer at the end of hers.
When I learned about my mom’s cancer from R, I called my brother. I was expecting him to welcome this new information. But he was skeptical. He had spent years after her death intensely focused on his studies, continuing his pattern of overachieving without a break (he finished college in three years with a triple major, went on to get a law degree and then a PhD). He was reluctant to give up the mental illness explanation for her suicide. Perhaps because he had done his processing of what happened and didn’t want to go back and think about it again. Or maybe he didn’t think this new information was enough to change his understanding of what happened.
Our mom knew how hard it was going to be on me and my brother. “This is the most terrible thing I have ever done,” she wrote in the note she left. How can we possibly understand when somebody who we love so deeply does something so terrible to themselves, and to us as well? The trauma of experiencing losing a loved one in this way leaves us searching for an explanation: The mental illness label, in all its inherent ambiguity, offered us one.
I’m becoming more and more skeptical of this way of looking at suicide. Most people who commit suicide do not have a known mental health condition, and the most common contributing factors are relationship problems, crises, substance use and physical heath problems. Suicide is not just a downstream consequence of mental illness. And mental illness is not a label that we can cavalierly put on anybody who attempts suicide. When we do put the label of mental illness on suicide, this can make the suicide even harder to talk about. After my mom’s suicide, the layering of these taboo topics—mental illness on top of suicide on top of the big cancer secret—made it hard to talk about what happened. Looking back with my new understanding, I can see how the taboos around mental illness and suicide actually protected her cancer secret for 18 years after she died.
In the note she left, my mom also wrote: “I’m very ashamed for failing. Please forgive [me]….” I look at these words very differently now that I know that she was struggling with terminal cancer. I wonder: When she talked about feeling ashamed for failing, could it be that she was referring to “failing” cancer treatment? When treatments don’t work, cancer doctors will often say that a patient failed treatment (and this kind of language was presumably even more common two decades ago when she was diagnosed and treated). Was she told by her health care professionals that she had failed? Did she blame herself for her cancer? Did she feel so ashamed of having cancer that she couldn’t even talk to her children about it, or even write the word “cancer” in her suicide note?
In writing about my mom’s death for the first time, I have struggled with writing the word “suicide” to describe what happened. Not so much because of the taboo surrounding it, but because of my shift in understanding of her circumstances. She would have died of cancer, but didn’t want to die that way. I feel pulled towards explaining her death with just the C-word, saying that she died of cancer, and leaving those other sensitive topics—suicide, depression, mental illness—out of it. But the truth is, for my mom, it was not the cancer itself that killed her, it was her fear of it.
Why are we so afraid of cancer? Because we don’t understand it. Why don’t we understand cancer? Because we are so afraid of it. We, as a society, are stuck in a vicious cycle of fear and ignorance about the C-word.
Across societies, taboos often arise because we lack understanding of the underlying causal mechanisms. And blaming people explicitly or implicitly for their diseases is an ancient practice, and one that we must stop if we are to approach cancer patients more humanely.
My mom should not have suffered alone. I wish that she could have spoken about her cancer with me and my brother, and that she would have felt comfortable letting it transform our relationship the way that cancer inevitably does change our relationships with our loved ones. I wish I could have loved her and held her hand and spoken to her about how it’s not her fault. I wish I could have told her that she didn’t fail, that we as a society have failed to find a more humane way of treating and talking about cancer that helps patients flourish rather than demoralize them.
In the last months we had together, my mom and I drove together from Portland, Oregon, where I had just finished my Freshman year at Reed College, to Tucson, Arizona, where I had gotten a summer job working in a laboratory at the University of Arizona. We spent three days driving, talking and enjoying the changing landscape around us. In the final stretch of highway, just an hour outside of Tucson, I heard a “pop” and felt the car start wobbling with a rhythmic thumping sound.
A flat. I was in the fast lane. I slowed the car down and pulled it over onto the left shoulder. As we sat in the hot car on a 100 degree, late-June Arizona afternoon, on the side of the highway, strategizing about our next move, the sun beamed in from the passenger side window where my mom was sitting. My mom found an umbrella and we fumbled with it, trying to create shade inside the car, but there just wasn’t room to open the umbrella inside. Then my mom had a brilliant idea: She opened her window just enough to pop the top of the umbrella right outside the window, and then opened the shade outside, hanging on to the handle still inside the car.
Somewhat pleased with ourselves for solving the problem of the blaring sun, we started discussing our plan again while the traffic flew by. Just then, a semi-trailer whizzed by, creating a vacuum between the truck and my mom’s side of the car; it grabbed the umbrella, pulling the shade inside out and pulling it apart. Our jerry-rigged response was destroyed.
We were hot and frustrated and still struggling with a plan to fix the flat. But we looked at each other and started laughing. In fact, we laughed so hard that we cried. We didn’t know what we were going to do, how we were going to get back on the road, or how we were going to deal with all the problems ahead of us. But we laughed, laughing with tears in our eyes and looking at each other with mutual understanding of the absurdity of it all. We were well outside our comfort zone. But we were together; laughing, crying and sharing a shift of perspective that brought us closer.
Athena Aktipis is an assistant professor of Psychology and director of the Interdisciplinary Cooperation Initiative at Arizona State University. She is also the author of the newly published book, The Cheating Cell: How Evolution Helps Us Understand and Treat Cancer.