Chronic illness causes a lot of pain, and pain always carries fear with it. One way to cope is to recognize that fear can co-exist with many other feelings. It is OK to be scared, and it is OK to keep going.
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.
After my first brain surgery, I thought that there would be nothing more difficult than sustaining that. It was a physical and mental injury that stifled me in so many ways. I was determined to be the patient who amazed everyone with her resilience, despite knowing how problematic that could be for me as a real person trying to survive, but I put the pressure of a perfect recovery on myself anyway.
I remember waking up after surgery feeling shaky and nauseous. Two nurses quickly came to my side and I felt a rectangular bucket in my hands. The blurry room in front of me started to take shape. I saw machines and cords everywhere. I looked down at my hands to see an IV poking out of my knuckles. In my own mind, I was sure I was dead, but I found myself disappointed that the trappings of a medicalized life had not fallen away. I thought to myself, “surely in death you don't need IVs.” As I watched the nurses rush around me and bustle about, I became more lucid. I realized I was, in fact, alive. The signs of life were being objectified by IVs, oxygen tanks and machines that monitored everything my body was doing.
"Your family will be in to see you soon," the nurse cheerily buzzed.
I tried not to throw up as I looked up at her. I was immediately disappointed, taking my nausea as a signal that I was showing weakness. I was so hard on myself that day.
I have had 10 brain surgeries since then, but none have been that difficult. The first time we do anything is hard.
The first class I took in grad school, I was daunted by the intellect of everyone around me. The first time I rode a bike after losing my balance nerve to my brain tumor, I squealed in dread at every hill. The first time I travelled after my surgery, I moved with fear and gingerly held my breath as the plane took off. It's been five and a half years since that first surgery and I am writing this from a plane. A plane I boarded with confidence and breathed freely in as it took off. I am not afraid of being afraid anymore.
I spent years after my surgeries living in fear of my pain, and that with the pain came the promise of an early demise. I've not totally conquered pain or fear. In fact, I am in pain as I type these very words. But, I have conquered the desire to be the perfect patient and live in a perfect world where I overcome everything that happens.
I've learned that bad things happen, and sure, sometimes we are resilient. Other times, it is a bit messier, recovery is slow, we have side effects and complications, and yea that will feel scary. I spent the better part of four years getting brain surgery, over and over again. With each surgery my desire to come out of them perfectly and without showing my pain drifted further away.
Now, I don't try to be the one that gets better the fastest or goes back to normal. Instead, I try to be the person who allows
things to be the way they are. I try not to fear the things I haven't done and when I do feel afraid I try to just allow that fear to exist, in me, alongside me, and all around me. I try to embrace the pit in my stomach that tells me I am nervous to keep going. These things, after all, are all out of my hands.