We spend so much time making it look like we've got it all covered, when in reality, things are unraveling just below the surface. Maybe that's OK.
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.
Roughly six days before my most recent craniotomy, I was sitting in a restaurant foyer waiting for my professors to arrive for a lunch meeting when I overheard two women speaking. The women appeared to be in their 60s and had an air of relaxation about them that only comes from living in Boulder, Colorado. Initially, their conversation mimicked that 'all is good' attitude that seemed to fit their outside personas. Then, after the pleasantries had been exchanged, they turned to conversations about their husbands.
"John just doesn't know how to recover, he can't stomach the pain, I think it is because he is a man," one woman said.
"Yes, well, maybe," the more progressive of the two responded. "But maybe it's not about gender, maybe he's just not trying to put on a brave face anymore."
Maybe he isn't, I thought to myself. Maybe the pain is severe, maybe it is not — Who are we to say? I smiled to myself at the gestures towards illness and wellness that these women didn't even fully realize they were making. Pain should
look a certain way.
stomach pain in a certain way. Women can withstand more. Sickness should
be overcome. Illness is a temporary state of being. There are definitions that have become ingrained in us that we don't even realize that we buy into. Sick people lose their hair and wither away, while the well build muscle, work hard, and are busy. Sick people are so often told how to be sick and well people are so often told how to police sick bodies. I hear it all the time.
"Cut yourself some slack, you do have a brain tumor you know"
"Don't name your disability, why would you want to stand out based on that rather than your merit."
"It's OK to cry, I know you want to cry. Just cry."
"Be positive, your attitude is everything."
Those are just a few of the many contradictions that I face as mainstream able bodies attempt unknowingly to police my sick body. There are ways of knowing and understanding illness and wellness that have been so deeply ingrained in our thinking that we cease to see them as the constructs they are.
When faced with them, I simply try to laugh them away, to deflect with humor so as not to have to enter into the complex discussion of the way normal bodies are used to judge, demean, interrogate and control those less normal.
Other times, I buy into the construct, trying hard not to let the effects of the surgeries I've had show on my body — growing my hair to cover my scars, wearing makeup, dressing well, being all buttoned up and looking normal —
while beneath the surface, the fabric of my being seems to be coming undone.
In academic circles, it is called the "super-crip." The body that has let no disfigurement, no trauma, no disability impact it. The body that emerges from tragedy stronger and more powerful — a super hero who simply needed their tragedy to propel them to greatness.The body that created (my least favorite phrase) a "new normal" and one that was vastly more powerful than the previous normal. The disabled body that overcame illness and disability, as though the state of our bodies and our beings must always be overcome to reach some arbitrary sense of what a capable normal body looks like. The body that says, "my disabled body isn't good enough."
It's understandable to want to overcome illness and to want to survive, but to compel sick bodies, and implore them to become stronger and more powerful than they even were before sets a powerful precedent and conditions us all to disallow different bodies to exist. What if I have a disabled body and I cannot overcome it? What's more, what if I don't want to? What if I see my body as just as valuable, just as sacred and special and meaningful and interesting as the so-called stronger and more normal ones around me?
We all try to stay all buttoned-up, look put together, don't let the cracks in the veneer show. But maybe, just maybe if we allow ourselves to crack, if we don't hide behind the false and trite sayings that implore us to be our best selves despite the weight our illnesses place on us, maybe we will see each other better. Maybe we will see positivity not because we are aspiring towards some notion of normal we always carried with us but because we love ourselves as we are. Maybe our drive to survive will come not from a desire to return to a previous version of ourself, but a desire to get to know the current version, with all its abilities, varied as they may be.
I had my sixth craniotomy last week. Though I am anxiously awaiting a follow-up appointment, for all intents and purposes, the surgery did not seem to correct the persistent spinal fluid leak that has been plaguing me since I first began my journey with my tumor. Despite this, I am charging forward, or at least idling by.
While 'recovering,' one of my closest friends gave me a card that said, "Let me be the first person to punch the next person who tells you everything happens for a reason." Funny, right? I don't know why this is happening to me, I am not the type of person to attribute the happenings of my life to a greater power or some sort of universal plan, so instead of resigning myself to the idea that whatever this is holds a lesson in it somewhere, I am choosing to honor and value my body and my self as they are now. A bit broken, buttons undone, sort of messy, scared and just fabulously awesome.