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.
When our bodies have experienced trauma, it is so easy to live in fear of what else may go wrong. But accepting that we don't know what will happen to us also means accepting that the worst is not always inevitable. Sometimes, despite our fears, we still thrive, and that is a reason to recognize that even if you've suffered, you can still be OK.
I had a rough couple of days peppered through the past few weeks. The whirlwind of a cross-country move, the bounty of our friends and family helping us warm our new home and the pressures of a new job in a new place all came together to culminate in a very joyful but exhausting month. At the end of the month, though my spirits were high, my body was struggling to adapt to both the environment and situation. When I left Denver for my new life in my new city, I decided that I wanted to be more conscientious in my quest to cope with my chronic pain. I opted to forgo the remainder of my Botox shots and trigger point injections because I feared they numbed my pain to a degree that was actually causing me to harm myself. I moved too freely and could vaguely feel the muscles strain beneath the sheath of numbness. I needed to feel a degree of my pain because I needed to heal it by teaching my body how to move through it. I knew this would not be easy, and I knew that it would take some time. (I also knew then and acknowledge now that this is not for everyone and would indeed not work for every type of pain, thus this quick disclaimer that it is not heroic or smart to go off of any pain regimen you have without talking to your medical team and support system, and to make mindful decisions about your pain with medical professionals.) Between the return of my knotted muscles in my back and the various life changes, I caught a cold and for the good of myself and my co-workers, I opted to stay home and in bed.
At first it wasn’t so bad, but within a few hours, my curled-up body, various tablets and books strewn around me for entertainment, the pill bottles and heating pads all started to remind me of all the times I was unable to do much more than be in bed. I noticed how quickly and astutely my body curled up into a ball, protecting itself — a muscle memory predicated on fear, responding to danger. I felt the familiar listlessness fill my arms and legs. While I felt at home in this position, I loathe to stay in it. I didn’t want to be sick, not any kind of sick. And even simple sickness, like a cold or a flu, is isolating, because even when your caretakers flutter around you, bringing you all you need, there is a distance. There are less moments to touch, less moments to hug, less contact that tells your mind what your body must feel to know, you are not alone.
I railed against my sickness, railed against my body, viscerally angry that I was in bed. Hadn’t I been sick enough in my life? Doesn’t having the big sicknesses exempt you from the little ones? And to add insult to injury, the last of the trigger points was wearing away and I could feel every part of me pounding with pain. It all felt so unfair and like a child, I refused to accept the circumstances that befell me.
And then, the cough slowly faded, my voice slowly returned and my body aches shifted from those of a feverish body to the regular old brain surgery-related aches that I am sort of OK with. And I dove quickly back into my routine, vying to stay out of the bed, to de-medicalize my life, to rid myself of the memory of what it is to use your body to protect your body. I slept flat on my back and stretched out my arms and legs, even when it was less comfortable, trying to prove to myself that I was fearless. I was no victim. I didn’t need to curl up in fetal position to survive. I could do this.
Alas, the small ways we suffer each day leave traces on us. They tinge our day to day. While we hold it together and forget we have suffered and the days wear on, those traces of pain build and bend, change and maneuver. Sometimes the pain comes to the fore and manifests itself in complicated, senseless ways. My pain tends to come through as anxiety, showing my fragility as a human, sitting on the edge of my consciousness always ready to burst forth. That anxiety doesn’t diminish or demean how joyful my life is, nor does it color how much I love my life, it just exists, alongside me, pulsing under my skin. And when it comes out, it brings with it all the traces of the past — the good and the bad colliding into each other rapidly and without sense. And in those moments, I feel confronted by myself, and if I let it happen, I feel broken. I feel too fragile, too weak, too human. Then I remember we’re all fragile and weak and human. I remember that we are mean and we are nice and we are scared and we are brave. We are all of it because we are just people, complicated, but incredibly interesting people. And life is so hard. But it is also so rewarding and full and joyful and magnificent moments. But that doesn’t change that it is hard.
While my physical symptoms of the exhaustion I had endured began to fade, the animistic began to emerge. My spirit and mind needed release and relief and my anxiety was coming to the fore. I loved on my husband and then quickly clashed with my husband. I poured my heart out to him. I held him close. I broke down to my sister, and even collapsed in tears in the arms of a co-worker, exclaiming with fear to all of them the driver of my anxiety, that it is “so much easier to be sick in the hospital than out in the world!” I was lucky to have so many people to love and nurture me through my conflicted moment and to remind me that I am not sick, I am recovering, and it is a long road with peaks and valleys. They reminded me that this moment is not all moments, it is just this moment. And this is a moment of recovery, of growth, of coping. I was reminded in all of this of a reaction I was taught by a group of friends during our annual holiday debrief of the year. As we exposed our hopes, desires, successes and moments of growth to each other, one of my friends wisely shared that when life’s moments feel so big, scary, unfair or hard, he simply responds, “Or maybe, it’s fine.”
Or maybe it’s fine.
It could be a disaster, or it could be fine. It could unravel, or it could be totally fine.
I sat at my desk yesterday and took in a deep breath and told myself that all the things that have left traces on me and build to fear could very well unravel and take me down, but they very well could not. Life is a gamble, and to me, our fates are not written, so who’s to say? Maybe it is fine.
I felt so calm in that moment, in that conditional moment of releasing the outcomes I’d built up in my head and that is when I realized that yes, the hard stuff I’ve been through did leave traces on me, but so did the good stuff and I reveled in that for a moment. And with a big smile on my lips, I set out into the world knowing that maybe, just maybe, everything was just fine.