Samira Rajabi was diagnosed with a vestibular schwannoma, also known as an acoustic neuroma in 2012. She has had ten surgeries to deal with her tumor and its various side effects. She writes a blog about her life, surgeries, recovery and experiences at LivingWithHerbert.com. She is currently a post-doctoral fellow at the Center for Advanced Research in Global Communication at the University of Pennsylvania, where she studies media studies. In her spare time she plays with her two pups and spends time with her husband exploring Philadelphia.
"It would be hard to be a family member of someone with cancer without worrying, but what does it mean to worry, and does our worrying mean we are coping?"
Every time I walk my dogs, I inevitably step onto a crack in the sidewalk. Sometimes, when this happens, the old rhyme I’d learned in elementary school echoes in my mind: “Step on a crack, break your mother’s back!”
I hear it in the sing-songy voice of the young girls who used to say it to me, and say it with me. We’d playfully tease each other with loads of rhymes like this as we ran around the school yard during recess.
Some thirty years later I still hear the refrain each time my foot slips onto one of those cracks. And each time I worry to myself, did I cause her pain?
See, the thing is, my mother was diagnosed with breast cancer just over two years ago. Her diagnosis was scary and severe, every element of it imprinted onto the fabric of who I am as I work hard to see her as my mom and not her diagnosis. She hates when I see her as her diagnosis. She hates when I call to ask how she’s doing because despite my best efforts, I am focused on her disease.
Lately, I fell out of that pattern, and we somehow both knew that when I asked her how she was doing it wasn’t anymore code for “how is your cancer, are you in pain, what do you need, can I help you, this is the worst.” This stream of consciousness that we both knew lay behind my mundane “Hi Momma, How are you?” slowly drifted away as the physical, emotional markers of her disease faded away. With every inch of hair growth, I saw the Mom she was before, the mom who stayed by my bed when I was sick, holding the big clear rectangular bucket the hospital had given me to puke in. With every return to something normal, I would see the same Mom who used to drop us off at swimming classes and ferociously work out on all the sophisticated weight equipment.
So much did I erase the marks of her disease off of her, I treated her ongoing treatment, what I call her forever chemo, as just a part of her to do list. I was so focused on not worrying, on not feeling the pain of worry, I forgot to pay attention to what she might actually need. I tried so hard to not see her as her disease, I stopped fully seeing her suffering. And maybe, just maybe, that was my survival technique. Confronting my mom’s cancer on the heels of my own brain tumor was challenging at best, and devastating at worst. I needed her to be okay, so I positioned her that way in my mind.
And then I saw it. I saw the suffering, viscerally and in my face. I saw my mom, hair wet from sweat, a fever plaguing her. I asked her, “Mom, what’s going on? Are you ok?”
“Of course I’m okay,” she spat back at me, incredulous that her disease was still haunting her even after doctors told her she was a survivor.
Her reconstruction, months after the original double mastectomy, had caused an infection. She was sick and she was quietly suffering. In fact, I think in some ways she preferred that — the quiet of the suffering. Even with a low grade fever lasting for weeks, she never let on. Each day when I would phone her she’d tell me she was good, she’d ask if I had had dinner (no matter the time of day), and tell me she was good, just busy and had to go.
I’d relent, convincing her, and myself to a degree, that I believed her. But there was always this tinge of worry in me. Even when I’d outwardly normalized my mom, and I performed the part of the doting daughter, nonplussed by the ebbs and flows of living with stage IV metastatic breast cancer, the quick heartbeat and the racing adrenaline of a consistent panic never really left me. And finally, that panic, that fear, that worry broke through.
What is it to worry about the people we love? What is it to value their lives at the level of our own? What is it to cherish the people in our world — with their gifts and their flaws – beyond anything and above all else? Is worry intrinsic to love? Is worry in the way of love?
I’m not really sure the answers to these questions, but I have realized one thing. Whether we worry or not, there is no normal to return to. Life was medically simpler before the cancer diagnosis, but then, I had a brain tumor. And before that, well, we were human beings, flawed and fragile, just making our ways through the world.
So, I have decided not to think of worry in the same way anymore, as a feeling that bubbles up and hides away depending on our adherence to some constructed, idealized narrative of normal. Instead, I have decided to be present. To ask how mom is doing and to really want to know, and to accept the answers she gives me with patience and grace as we learn to navigate this world together.