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.
Those of us who have suffered often fear what can go wrong with them. But the more we know our bodies, the more we can love them and ourselves.
OK, so I had a brain tumor. If you read my writing or you know me then you know that. I try to act casual about it, but the 10 brain surgeries and the constant physical reminders of them force me to constantly recognize that I survived, and there is a whole host of emotional and physical issues that come with survival. I’m not really in the mood to get in to those right now, but suffice it to say, though I mask it quite well, everyday tasks are daunting, challenging and exhausting while also being totally exhilarating, joyous reminders that I lived.
Other reminders that I am alive are my other body parts. My focus on my brain for a number of years led to an overall neglect of the rest of me that then led to an overall obsession with being my most healthy self, all of which made me a regular in doctors’ offices, gyms, physical therapists clinics and more. Despite my very best efforts, my body, like all of ours, is unruly and annoying and so even my best efforts often fall flat. That said, I have an intimate relationship with myself and I know when things are off. That’s why I was alarmed when I found a lump in my breast that hadn’t been there before.
My husband felt it, so did my doctor and so it was necessary that I look at it. Now, before we go any further, after a very agonizing few weeks waiting for appointments I found out that the lump was nothing but my crazy hormones trying to regulate after years of chaos on my body. That said, the two weeks leading up to my mammogram, ultrasound and appointments were agonizing.
In the lead up to the appointment, I simply vacillated between a few extremes, the first of which was disbelief in the possibility that my body, after all we had been through together, was at it again, making cells that didn’t belong. I was pissed that the possibility was even something I had to contend with. On the other extreme was my rationalization that I had been through something like this before, and I could do it again. Then was my admonition that I did not survive all this brain tumor business to have my body give me cancer, I called this my “oh hell no!” attitude and I was certain that the world could not be so cruel. Then there was the simple protestation, mostly whispered to my partner late at night and on the way to the appointment, “I don’t wanna go.” He made me go, and when we went to the same waiting room where just a month prior I sat awaiting an MRI, I felt my anxiety rise, my heart rate quick in my throat. I was taken back, given a “top up robe to be kept open to the front” and seated in a crowded room of women. The pink walls and chairs of the diagnostic waiting room had a different atmosphere than the waiting room for other diagnostics. Here there were pictures of hospital staff and the doctors spoke in solemn whispers. The women around me were diverse, and so were their reactions to their mammograms. Some quietly whispered to their companion’s hopeful messages about the danger that lurked in their beautiful bodies, others yelled for nurses, their voices shaky, their displeasure apparent. I sat in the waiting room for three hours that day, observing the world around me, feeling both a part of it and outside of it all. “I’m young,” I kept telling myself, I don’t belong here, letting myths about breast cancer enter my imaginary and leave, I patiently and quietly waited my turn.
When I was taken back, the tech was quiet, if not a bit cranky, and despite my best efforts at nervous small talk, she barely cracked a smile. About a week later, because of poor logistics and scheduling on the part of the hospital, I returned for the ultrasound where a doctor, in what I call her street clothes, came and got me, did a quick test and told me I was fine. It was unceremonious. It was wholly unremarkable. I would say relief flooded over me, but in reality, I was just tired. Tired of tests, tired of waiting rooms, tired of the constant suspicion of my own body. I was laying on the table and I just wanted to relax back, to catch my breath, to process the fear and the joy that culminated in nothing. Even then, I was grateful for my health and that I didn’t have to do to my breasts and body, what was done to my brain and body. I texted my husband the news with a glib and facetious exclamation that “I knew my boobies wouldn’t hurt me!” all the while knowing that while they didn’t this time, illness is not a choice, just a circumstance, and one that can happen to all of us.
Despite all the discomfort, emotionally and physically, of confronting the medical testing process for a disease that is placed at the forefront of our social imaginary and pinkified, marketed, coopted and convoluted, I’m glad I got the test done. I’m glad it was clear. And I’d encourage all of you to have intimate connections with your bodies. Know your whole body though, not just your breasts. Listen to what your body tells you and know it is okay to ask your doctor when things don’t feel right. I can’t promise you that you’ll always get good results, I certainly didn’t in the past. But I can promise that knowing more of our bodies, even when we fear them, will help us love them more, and in turn, love ourselves a little bit more fully.