When life feels really big, it's natural to see only the worst case scenario. It's natural to see catastrophe looming. Whether or not a catastrophe is on the horizon, it is out of our control. So perhaps it is more fruitful to keep ourselves in the here and now, in order to live our best life possible.
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.
The puzzle pieces of my life don’t seem to fit together lately. In addition to my own illness, I have been bearing witness to the illness of another. In addition to my own stress, I have been bearing witness to the suffering and stress of my support team. Recently I had a doctor’s appointment where I was told an inevitable piece of news. I will, for the tenth time in my life, need brain surgery. This didn’t come as a particular surprise, as it was apparent to me that my last brain surgery (the ninth in a series to fix a cerebral spinal fluid leak that was a side effect of a brain tumor removal) did not work by the fact that spinal fluid leaked out of my nose and onto the ground almost immediately after surgery. For me, the news of yet another procedure was not particularly stressful. In fact, having heard the same news over and over again for quite some time, it felt rather routine. For the legion of family, friends and family of choice that care for me, this news felt less than routine. Despite our clear anticipation of what the doctor might say, the exhaustion of caregiving, of worry and of heartache seemed to have worn on the people I love and the news felt heavy, hurtful and difficult to hear.
The stress of chronic illness can be fatiguing over time. I had dealt with my fatigue, but those around me, in an attempt to keep a brave face, had never let the fatigue wear them out or break them down, so they could build back up. Watching the people I love suffer in illness, suffer in caregiving or suffer in bearing witness to my suffering has been a struggle that shifted my perspective towards my surgery. Suddenly, as I stared silently at the faces of all those suffering around me, I felt the weight of catastrophe wash over me. I felt tears well up as my throat tightened. I stopped seeing the surgery as what it was, the next reasonable step in treating something difficult to treat, and felt the culmination of all it might mean. I felt the weight of a career unachieved. I felt the weight of a body’s decay. I felt the weight of naps and pain meds and failures of all kinds, physical and emotional, in all parts of life. I went from the present into a future untold, weaving tales of heartache and desolation. I cemented in those moments where I got lost in the depths of my mind -- a fate no truer than any other version I could concoct during happier times.
I thought back to a meditation I had listened to over and over during severe bouts of pain on an app called “Buddhify.” It was by a woman named Emily Horn. In it, she tells the chronic pain sufferer to name the pain. Does it throb, sting or ache? In naming the pain, she tells the chronic pain sufferer that we come to the present moment rather than build stories about our pain. I can hear her voice vividly in my head, telling me, “I don’t know how long the pain will last, and since I don’t know, I should not cement my fate as a pain sufferer as permanent.”
I spoke with my sister a few days back, just days after hearing the news about surgery, and told her I was missing more of my summer and my life in light of this surgery. She told me to take a long view. She told me that career, life, love, hope, joy, all of those things would be there over a 20-year course. This is just now. It may also be in the future, but it is just now.
I snapped out of my pity party, I pulled out my laptop and got back to work. Surgery, pain and suffering may stop my life or any of ours at any moment, but it hasn’t yet. I decided I would let my fate decide itself. So in order to return to my life during and after medical intervention, I have planted myself firmly in the present. A present that is full of so many pieces of a puzzle that doesn’t always make sense, but you know what? I’ve always liked the abstract. So here I sit typing away, planning my evening, and doing my best to be here, to live now.