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.
My heart seeks joy. My life is joyful, full of light. And I know trauma can live in the light, I have seen it and lived it.
I was diagnosed with a brain tumor in 2012. It was scary, daunting and exhausting. It was not impossible to cope with, or perhaps I only feel that way because I survived and have a relatively healthy distance from and denial of it. My rational mind remembers how hard it was, but I often dismiss it away. Perhaps I’m trying to forget.
I had a lot of brain surgery between December of 2012 and July of 2016. I used to remember the date of each one, with the dates of lumbar punctures, minor outpatient procedures and office visits peppered in between. I could feel in my bones the anniversaries of my surgeries creeping up on me because my anxiety and fear would exist viscerally in my body, visible in my enlarged pupils and the hair on my arms standing on end. But, as one surgery turned to two, then three, four, five, all the way to 10, I started to lose count. As hospital stays went from short couple-day stints to ones that lasted weeks at a time, the days and surgeries blurred together.
At the time my work and my writing about my health (not to mention a constant barrage of family, visitors and Netflix), kept me sane. I wrote about my health because having people see and acknowledge my suffering made me feel alive, and my outward calm about the possibility of death made them feel OK. I could commiserate with any patient; I could feel their pain outside of my own. I was so OK with my own mortality and my position of patient that I was unphased by even the most tragic stories. I had learn how to partition off my brain. My anxiety and fear were hidden away so I could cope, write and serve patient communities.
My professional research interests, always pointed at the macabre, took a turn toward the tragic as I devoured stories of suffering, intent on finding their meaning. I wrote a dissertation about meaning making online after trauma. I devoted my life’s work to seeing how suffering causes us to search for meaning, and how that meaning might actually make a difference.
I hear from a lot of other patients who are now my friends. I also get a lot of patients referred to me. With these people, these other suffering bodies, I feel a degree of comradery. I feel grateful that we can be there for each other, exchanging stories, wisdom, input and love.
And each day I meet more people and we almost always connect. It is such a beautiful family I have built.
Recently, though, I have watched myself hide, feeling the sheer burden of being entrenched in suffering constantly take its toll on my body. My shoulders are tired, they bristle to the smallest touch, weary from carrying the weight of the world. Stories of cancer, tumors, surgery and pain dance around in my mind as I close my eyes.
My work is trauma.
My life is trauma.
My social media feed is trauma.
But my heart seeks joy. My life is joyful, full of light. And I know trauma can live in the light, I have seen it and lived it. But lately, when people don’t ask how I am and then share suffering just because they can and not because they lived it, or exist in it, I feel stuck in the barrage of sadness so quickly thrust at me.
You see, I think the thing that changed for me was that my mom got cancer. When we heard about her diagnosis, my family and I froze in our tracks.
My sister and I thought about moving our lives back home to Colorado. My brother sat silently beside my mom, steady and strong. My other sister sprung to action, the oldest child of four at the helm of the ship. We were all adults, but to me it felt as though we all stared blankly at each other like kids that just got put in time out with very little sense of why anything that was happening was allowed to happen.
I didn’t want to talk about it. I just wanted to scream. When I closed my eyes, it wasn’t my familiar feeling of headaches pulsing against the sound of my tinnitus, it was the unrelenting image of tears rolling down my dad’s face, or my mom’s face hidden behind her beautiful hands, crying as her hair fell out.
My mind kept tripping over itself, my whisper kept escaping my lips, “this is such bullshit.”
I didn’t tell a lot of people about my mom at first, and even those who knew her saw only the performance of wellness she so meticulously maintained. Her home was always ready for guests, her wig was never askew and her smile, adorned with bright red lipstick, stayed on. During this time, out of the blue, I started getting a lot of unsolicited research suggestions, or perhaps I suddenly was more sensitive to them… Oh you study trauma, have you heard about this disease? Or that accident? Or what do you think about this shooting? Or have you even read about what’s going on in X, ,Y or Z country. It’s terrible, you should read about it.
I had created this problem for myself. I had chosen this line of inquiry for my work. But the thing I didn’t chose was the other stuff — the hard stuff. I hadn’t chosen to get sick, and though I’d opted to share it, I didn’t want that to mean I had to be a repository for suffering writ large.
I don’t mind hearing people’s stories, the real ones, told by real people, who need real meaning and who shared real vulnerability with me. In fact, those connections are life giving to me, offering me hope, community, love and compassion. But then, there are just the caricatures of stories, the simulacra of suffering distilled into a talking point to fuel inane conversation, to fill the void between strangers or worse, old friends. These are the ones devoid of a human voice, with no face, no name, just the passerby trying to relate, to make idle chitchat with the girl whose Twitter profile calls her a “brain tumor host body.” Oh, you had a brain tumor, I knew someone in college, who knew someone, whose best friend had a tumor. She died, I heard it was terrible. It was tragic. These well-meaning efforts to relate to my story negate the fact that that in building a wide-reaching network of “brain tumor friends,” a lot of my friends died. And their death is not an anecdote to be shared among strangers. There suffering is not for us. Their death is not for us either, because their life was sacred.
So is mine.
So is my mom’s.
I used to take on everyone’s suffering, thinking I had to, that it was my job as someone who survived and had a platform through which to write about my suffering. I thought the privilege of survival came with the responsibility of enduring not just my own trauma, but everyone else’s trauma too. The stories of suffering took over my world, my mind a library whose catalogue was a list of names and dire circumstances. It had stopped building community for me at some point and started to impact my day-to-day life. My PTSD crept in, my fear took hold, I didn’t want to know who had cancer, or who died. I didn’t want to see anymore pictures of anymore pain. I was so tired.
I was so damn tired of trauma.
Now, I try to cultivate balance. I’ve told my husband we need at least one day a week where we feel like we’re on vacation — and this can be anything, we can laugh or cry, but the point is we will do whatever we want. I still go to work, where I am writing a book about *cough* trauma, I have all my friends from my online and offline communities who I love talking to, and I am even going to lead the support group that is specifically for people with my type of tumor. Being tired of trauma doesn’t mean I shirk the reality of the hold it has on so many lives. But now, when I am tired, I tell myself it is OK. I tell myself I can breathe for me, and I tell myself that my suffering is enough, and it is enough and what I do for others, it is enough. I am enough. I do enough. My life, this work, this suffering, this meaning, it is all enough. I mark these moments for myself, reminding myself that they are not selfish, but important in caring for my own fragile sense of self, for my survival.
When my mom got cancer, I didn’t know about it at first, and in her desire to protect me and only give me hard to take news while having me close enough to take care of (in person), my mom waited several weeks to tell me. During that few weeks I remarked often about how I felt distant from my family, like something was wrong, like they were hiding in plain sight.
When my family did tell me what was going on, I lay awake each night, afraid of what dreams this new reality would lead to. When I was most fervently trying to avoid the fatigue that took over every inch of my body, I would write in the notes on my phone. Some notes are just descriptions of the moments of the day, brief and ineloquent, but clear attempts to capture every waking moment, not lose anything, not miss a beat. Other nights, I’d write poems, raw and unedited.
I’m ending this random diatribe with one of those now, one that I think captures my shifting relationship with trauma — as both my constant companion and the thing I most try to avoid. Perhaps in it, we can all find a little bit of meaning that trauma has taken away.
We think we are untouchable
It's the way that we survive
The things that ail our counterparts
Will never cease the way we thrive
We think we are entitled
To laugh and joke all day
Our belief we are untouchable
Keeps all our fears at bay
No one is untouchable
Pain is always steps away
Your guard falls when you are blissful
And you get caught in the fray
We never stop to notice
When it is the chaos came
Until the world has crumbled
And we hang our heads in shame
That we didn't pay attention
To the life before our eyes
We squandered all our moments
And called it, "going about our lives"
But no one is untouchable
That's just the way it is
So catch your breath
And ground your feet
And check the way you live.