Ill or not, so many people suffer. But perhaps in sharing that suffering we can change the face of illness, health, suffering and everything in between.
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.
In his “Illness and Culture,” author David Morris wrote “suffering implies an experience not just disturbing or repugnant… but inaccessible to understanding.” He goes on to tell us that for people who have suffered or continue to suffer “voice matters precisely because suffering remains to some degree inaccessible.”
Suffering deprives us of our voices, of our abilities to engage the world in meaningful ways, of our ability to survive a world that hasn’t been taught to see broken, untidy bodies. Our diseases force the contemplation of the fragility of life. Our bodies prevent the people around us from hiding from their pain. Often in our explicit suffering, we force so much awareness that people refuse to see us. Silently suffering, we become invisible. Our silence stands in stark opposition to the voices around us. It is important for every person to know that their voice matters, even though when sick, it may feel like that voice is in crisis.
Many people know what it is like to truly suffer. Many know how silent we become as we face our pain each day. Sometimes that pain is physical, and sometimes it is emotional, predicated by a fear of our own mortality. Often it is a combination of many types of pain. Many of us know what it is like to articulate our pain, and then we know the feeling of the world moving past us and the feeling of our supporters waning and becoming bored of the constant and inescapable nature of our chronic pain and suffering. For some, the suffering comes on quickly, takes large tolls on us, and leaves casualties from which the world takes a long time to recover. Diseases and illnesses each function differently in our bodies. The suffering takes a different toll on each of us. Some of us survive, some of us cannot, will not, do not. There is no fairness to it. There is no justice in it. There is no rhyme nor reason to the ways some suffer and some don’t. There is no logic to the ways some recover and some deteriorate.
As I have found myself quietly suffering with the after effects of a brain tumor and the pain and fear inherent in treatment, I have built a strong and stable community of others who have suffered. Sadly, they have not suffered the way I have. They have suffered in a way that took their physical bodies from this world. They have suffered in a way that led them down a path that could only end in death. We are all fighting that clock against death, in a way, but their journey seems to quicken, their pace staggers us, saddens us and ultimately forces us to say goodbye to them. As I have watched several people I love lose their lives to brain tumors and cancers, I held a quiet vigil for them, but more centrally, for their stories.
When we see scarred people, we write stories onto them. When we see broken, crippled, hurt bodies that are marred by the diseases and experiences that take these bodies on their journeys from living to dying, we assume we know their struggles. Or at least we think we can approximate them. It’s not just the healthy that do this, we all do. I remember my first appointment with my neurosurgeon at his bustling office in Phoenix. The office was full of people on various points on the continuum from able to disabled. Each person held so much in them but all I saw was the outside body and what I ascribed to it. I let my fear of what was happening to my own body prevent me from seeing people as people. I saw people as the outer manifestations of their diseases, telling myself quietly that I was scared to end up broken. We write stories on to people even when we cannot possibly understand them.
People often ask me why I write about my life, my disease and put my contradictions, weaknesses, and good and bad feelings out in the world. I do it because I, like those many people I could not see before, want to be seen. I don’t want to be seen the way we always see sick bodies, with pity, fear and even shame. I want to be seen as myself, and I want to let my voice rain from the skies full of truth, fear, love and light. I hope that in expressing my voice, I give others a chance to do the same. I have an ability to push back, to fight to be seen, so that maybe those that need to be seen but perhaps can’t fight, have more space through which they can be themselves. To me, that is worth fighting for. That is the revolution that this world needs. We need to see each other, to hear each other and to give voice to each other’s stories rather than write our fears, hopes and dreams onto each other’s bodies.
Whether we suffer or not, we can still access the depths of ourselves. If we do, we can foster space for sharing, for life, for honesty and for testimony. Our lives come to fruition when we narrate the stories that make us who we are. So let’s tell our stories, let’s let our voices ring.