Once a man stopped my mother and me as we walked from a grocery store to her parking spot. “What’s your disability?” He asked, pointing to the handicap accessible parking permit hanging from her minivan’s rearview. I don’t remember what my mother said back to him, but it was probably something like “Mind your business.” We both knew he was calling her a liar in an indirect way. His question was an attempt to shame her. This is how people who lack a sense of power exert control. They make a weapon out of shame.
She was 39 when the handicapped permit arrived in our lives, just three years older than I am now. She had no visible wrinkles, no grey hair. She never left the house without bright pink lipstick and Jackie-O sunglasses. She wore red nail polish on her toes. She did not look like a woman who was dying, at least if you think a dying person cannot be young or able bodied or capable of running an errand with her daughter.
But she was dying. Just a year before the parking lot encounter, my mother nearly died from a diabetic insulin reaction in front of me. She would have died had my sister and I not rubbed cake icing on her gums and dialed 9-1-1. We kept her alive while the paramedics made their eternally long drive to our house. We were nine at the time. This was not the first time we saved her life, but that’s another story.
When my mother was sick, when she was dying, I never used those words. Sick. Dying. This is not because I was afraid or in denial. It is because I was ashamed. Shame tunneled to the core of my being. Shame policed my language. Shame erased my self esteem. If I ignored shame, I thought I could make it go away. Instead of confronting my shame, I hid in my bedroom and read books about the Holocaust. I read every book about the Holocaust that our tiny library owned. I craved stories of other people’s suffering. I needed to know I was not alone. I needed to know suffering could happen to anyone.
Indiscriminate suffering became the theme of my writing. I wrote stories about girls whose mothers died or disappeared. I wrote these stories until a middle school teacher pulled me into the hallway one day and asked me if I was a masochist. She did not give me time to answer before she told me to stop writing these stories. They were freaking her out. I didn’t stop. I just stopped showing this teacher what I wrote.
Years later one of these stories won a national award that helped me get scholarships for college. My sister saved the story for me. She has always believed in my writing. A few months ago, she found the story and called me to tell me my life’s work is to write novels. But I can’t write fiction anymore. I don’t know why, or what happened to me, only that my inability to write fiction is directly connected to my mother’s death. I wrote one short story the year after she died. It was about a girl who tried to kill herself but survived.
I was the suicidal girl.
I was the girl who did not die.
No matter what my mother ate or how many times she tested her blood sugar, she would have an insulin reaction. She could not control her disease. Her disease would not be controlled.
She felt at fault for this dynamic, and she was made to feel this way inside a culture whose dominant narrative of illness employs words like “battle” and “fight” to erase the reality that control is usually the first thing to go when a person is sick. My mother did not battle her disease. She lived it for 35 years. She endured organ damage, organ loss, organ rejection, surgeries, hospitalizations, fractured bones, daily needle injections and blood draws, depression, and anxiety.
When she went to sleep at night, she never knew if she’d wake up in the morning. She wore an insulin pump. It did not save her.
The night after she died, I slept in the bed where she’d taken her last breaths. Her insulin pump beeped in the middle of the night. I threw it across the room. I wanted to break it open. After it hit a wall, the pump fell onto the carpet, completely intact.
My mother didn’t get to live in a time when women spoke openly about how shame silenced and policed us. The expression “body shame” was not part of her lexicon. She bought into the myth that her disease could be cured, and she believed her organ transplant was a cure. When her organs rejected seven years after the surgery, she gave up hope. She accepted her death. I do not know if she felt anger or if she blamed herself. During the last month of her life, she was the saddest I had ever seen her. She was sad to the core of her being.
Only a few close friends knew about my mother’s transplant or her organ rejection. Shame kept me silent. Shame kept me from reaching out. Shame kept me isolated. Shame fed my own depression.
I’ve had to speak up about my own illness this week. I’ve had to tell a friend and mentor –– and leader on my campus –– that I need to take breaks in order to protect my body from immune system attack. This need may mean that I miss out on opportunities. This need means I am not “leaning in.” This need means that I have to say the word “can’t” even though I’ve been taught never to say this word.
I am an overachiever. I am good at what I do. I am ashamed of myself when I say the word “can’t.”
I feel lazy. I feel like a quitter. I feel like a person who wants to squeak by doing the minimum. I am none of these things, but that’s the power of the word “can’t.” It evokes suspicion and disdain, especially when women use this word to set boundaries. You see, when a woman sets a boundary, there is often a professional cost. We are either shamed by others for setting the boundary, or we shame ourselves.
I’ve decided to stop giving a shit about shame. I’ve decided to take away shame’s power to control me. “Can’t” is not a bad word. Sometimes it’s the word I need to say, the only one that can save me.