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.
At the best of times, cancer is a difficult burden to bear, but in the midst of a pandemic, it's especially worse. But patients with cancer know the way out is by going through.
I’ve got a unique perspective, I think, into the pandemic that has gripped our world.
I was, once, a patient with a brain tumor, who spent the majority of her time in and out of the hospital for several years. My condition, while chronic in terms of pain and symptoms, is now stable. I may have some barriers in terms of immunity but given that the latest test for my spinal fluid leak came back with the equivalent of a shrugging emoji, I don’t know how at risk I am anymore.
Now, I am not just a patient, or former patient, or survivor or whatever language you might use. I am, instead, first and foremost the family member of a couple people with cancer. These people matter a lot to me. These people are older than me, and thus more at risk in a pandemic that strikes people of a certain age more frequently, and they are by all accounts, wonderful, full of life and charming people. They are also, in their own ways, stubborn, sassy and strong people too. I miss them terribly.
But I won’t go see them.
I have, as of late, found myself paralyzed by the fear of bringing the COVID-19 virus into their home. I work(ed) on a large college campus. I spent my days pontificating with students about the nature of the media, health, illness and trauma. I spent time in close proximity with young people in a small office. I could have been exposed. We all could have been exposed.
I don’t want my parents to get this disease.
I desperately don’t want my mother, who is thriving in so many ways despite her metastatic breast cancer, to get this disease. Her cancer is gone, held at bay by monthly infusions and injections every third week. Already every small sense of unevenness in her health is enough to send me and my siblings down Dr. Google-internet-research rabbit holes. This, in combination with the deep depression I see so many of my family members, colleagues, friends and community members trying to keep at bay feels deeply overwhelming.
Being “home” for people who are or who have been sick is not such an easy thing to stomach. We spent time at home, convalescing, healing, being sick. Home is both a sanctuary but to be relegated to it can feel like a re-inscription of our illness on our precariously held up bodies. Home is both a gift and a place we long to escape as we long to inhabit normalcy like we used to before we were diagnosed.
I don’t feel like my mom loves staying at home. So, I beg her to every day. And she does, using the same means for escape as others, except she emerges only to go to the hospital, now all alone because of new social distancing rules. She sits patiently while receiving infusions, sending funny video clips to her sisters across the world. We all do our best to stay stoic in the face of our fear, our anxiety and our collective suffering.
And, I get the suffering thing too, because I’ve been researching trauma for a really long time as part of my job. So, I understand the dual longing to have everyone stay home while wanting desperately to go out, to be out, to get out of this situation.
I have a unique perspective into this pandemic but as it turns out, that does not mean I have any answers. So, I try to temper my worry for my family, for my mom, for myself and all those in the world with laughter, with joy, with writing, and yes with crying.
And each day when I inevitably laugh and cry, I try to send the energy of those feelings out into the world and hope they urge our communities to not just say they care about people like me and my family, whose world was already fragile enough but to demonstrate it by staying home, showing respect when they must leave to go to the grocery store or give care to people in need and to believe us when we say, there is a way through trauma. It’s just going to take time.