In keeping a chronology of our moments of illness, we find ways to commemorate our life moments, both good and bad. We learn who we are, who we want to be and who we will become.
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.
I don’t know what’s worse, knowing what to expect when you’re sick and facing surgery or not knowing what to expect. So as I face down the familiar path of surgery, I am writing this to both temper my anxiety and to facilitate healing — not just for myself — for anyone out there.
Many of the great friends I have met through the online brain tumor community (tweeting under hashtags #btsm and #braintumorthursday) have asked me for a chronology of the events that led me to this upcoming eighth craniotomy.
I’ve always shared many parts of my journey in the genuine hope that I can both heal myself and enable others to understand their journey a bit differently. I think shared perspective is essential to finding ways through traumatic times. That said, I often beat around the bush, alluding to the procedures, events, sickness, pain and anxiety, but never naming it outright. Then, last week I heard a woman bravely stand on a stage in front of hundreds of people and name her condition outright. She suffers from bipolar disorder and wanted to strip it of the prejudices that so often are placed on it. I thought about how often I openly name my illness and how often I hide it out of fear of retribution, job consequences, or the sheer notion that I would tire the folks around me out with an incessant litany of problems. She shifted my perspective in the brave honesty she shared with me. So, at the urging of the people in various communities that I love dearly, here today, I have decided to name my ailments both in an attempt to contextualize my surgery and the ways surgery and illness seep into all other parts of life. I'm also doing this in attempt to give you, whoever you are, permission to share. It is so often that naming our fears becomes the first step to letting them go.
I conceptualize the life events that led to my current state of being in terms of anniversaries and memories. Humans are creatures that remember both good and bad events. As the great author Walter Benjamin states, “Memory is not an instrument for surveying the past, but its theater. It is the medium of past experience, just as the earth is the medium in which dead cities lie buried. He who seeks to approach his own buried past must conduct himself like a man digging.”
We are beings that remember and we are theatrical beings: inventing and reinventing the past as it suits our present moment. We build our memories through our shared experiences, building myths that guide our understandings of the experiences we face each day. Memories can be invented, acquired and embellished, they "assume a life-force of their own." (Bell, p. 70)Here, with no expectation for anything, I list my anniversaries, I name my memories, giving you permission to do the same and with an earnestness I think I rarely am able to access within myself.
September 2004: My first MRI. I remember walking the halls of my high school in my ridiculous heels clicking along the cold tiles, thinking, don’t let it be a brain tumor. The doctors missed the tumor — I was diagnosed with migraines, instead — and I spent the better part of the next eight years being treated for a list of conditions I did not have.
June 2012: I visited my sister and asked her to help me solve the problem of the constant ocean sounds in my head. She (a pediatrician) used her light-up ear wax cleaner and attacked me in the head. No answers were found.
August 2012: I started to fall constantly and without reason. The sound in my ear was loud and cumbersome. I went to the on-campus clinic at the university where I work. That same month, I had my second brain scan. It was long and scary. The doctors found a brain tumor and after comparing it to the previous scan from 2004, they were able to determine that the tumor had been there all along. I spent the next two months meeting doctors, learning about my condition and avoiding all the other parts of my life by focusing on school and on research about doctors. As a professional researcher, I made the tumor my job. I had to learn as much as I could.
October 2012: I met the man that I would first allow to cut my brain open. He was an expert and he did a good job inspiring confidence. We spent a strange, strained day in Arizona (away from our home in Colorado) pushing down anxiety and smiling as though this was a normal way to spend a day.
December 20, 2012: The first surgery. I had no idea what to expect. I treated it like an adventure. I sought to act as though it was a vacation. The morning of surgery, at 4 a.m., after taking a microbial shower, I sat on the edge of my mother’s bed and cried. I told her I did not want to go. She told me it would be OK. The stressful drive to the hospital began and though I attempted to escape the hospital, I went through with the surgery. Half of my tumor was removed. Half was left. I left Arizona where I had the surgery in pain, but with hope.
May 2013: For the first time in years, I reached out to a mental health professional to get support around all the issues that were plaguing my life. I had to come to terms with the difficult acceptance of the state of my mental health. Illness, in concert with broken hearts and the strain of graduate school, had taken a toll on me. I needed someone to talk to. I got help. It was difficult and yet it was fantastic.
July 18, 2013: After half a year of calls to on-call doctors, repeat MRIs and CT scans, and an inability to understand symptoms of what I was told was a potential cerebral spinal fluid leak, I went back to Arizona for my second craniotomy. The pain was severe. The fear was crippling. I thought the surgery had worked the day after the surgery as I couldn’t feel the familiar low pressure pain. As time wore on, I would realize that the repair worked too well and spinal fluid was filling up the space around my brain causing the opposite problem: high pressure and pain.
October 2013: I struggled to manage high pressure headaches for several months until I went in for a spinal tap. The tap ended up causing severe headaches that left me lying flat on the ground for a period of three weeks. I was listless, felt like I had let down the folks who loved me and I struggled to keep my spirits up.
June 2014: After a follow-up MRI, I received a late night voicemail that told me that the tumor they thought was stable had grown at a rapid pace. I would need more surgery. I was lucky to be surrounded by a group of thoughtful Rotarians who distracted me and carried me through to the next step.
January 8, 2015: The surgery. I found out on the January 7 that the surgery would be more than a partial tumor resection, but a full tumor removal. I was taken aback at the way the procedure that had previously been called “too risky” was now necessary. Fear crippled me that night and I was lucky to be shrowded in love. This was the first surgery in a series that would cause me immense trauma.
January 12, January 29, May 18,
June 1, 2015: These are the anniversaries of my many surgeries. They were routine in a way and terrifying in another way. These were all to repair a severe and recurring spinal fluid leak that resulted from a rare mix of the surgeries and my anatomy. It was a year that was filled with anxiety, depression and a lot of personal agony. Between May 2014 and May 2015, I worked on healing my physical body; but also healing my mind; naming the anxiety, stress and depression that results from emotional and physical pain; and on healing my spirit. I feel I made good progress.
October 6, 2015: After several months of begging doctors to take my concerns at face value, I forced a test known as a radio-nucleii cisternogram. The test was a series of scans that helped doctors determine that I did indeed have a recurring spinal fluid leak despite the repeated repairs. This was the last step in a four-month process of me attempting to be seen by my medical professionals and people in my life. It was also a moment where I learned to release anger and find productive ways forward. It was a pivotal moment for my mental, emotional and physical health.
December 17, 2015: This will by my seventh craniotomy and eighth surgery related to the tumor (who I have lovingly named Herbert). It will be another attempt to rebuild the mastoid air cells around my skull and stem the flow of the spinal fluid leak (who I have lovingly named Flo). The lead up to this day has been a mix of stress, frustration, fear, hope, but most of all — acceptance.
I have come to accept my life as it stands. It is broken in many ways but my body is lovely in all of its disjunctures, fissures and the way it violates and heals itself. I am an embodiment of the best and worst parts of each of us. I carry my love and my disdain for my body in tension with one another and acknowledge that each of these anniversaries, these commemorations of my illness exist with both joy and with pain. I know that they also exist alongside beautiful and difficult memories of past lives I have led, past friends I have loved and past pain and joy that I have carried. I know that these memories will also coincide with my new and recent anniversaries of new love, new faith, new joy and even perhaps (though I hope not) new pain.
I choose to remember each of these days in concert with a host of other anniversaries and moments that create the mythical moments that create the story of my life. We each engage in rituals of remembering. We each pick and choose the moments we make meaning from and we each decide to engage with those moments in particular ways. Those memories, alongside our present moments, make us the people we are in this world. They are the moments that determine how we inhabit our bodies and the space around us.
These surgeries, these anniversaries, are just one section of a long, beautiful, complicated life I have come to accept in all of its fullness. I am aware of myself: my body, my heart, my spirit and my soul.
I wish you all the same comfort that comes with accepting yourself fully. I also hope you all show yourselves compassion and acceptance. I still have the days where I am angry, where I resent my body. They are often the same days that I have moments of unadulterated bliss. Life is not a linear process, we ebb and flow with the changes and movements of our various narratives. I hope you all find your rhythms. And to each of you, I wish you a happy anniversary, for whatever moment or whatever type, you are commemorating today.
Bell, D. S. A. (2003). Mythscapes: memory, mythology, and national identity. The British Journal of Sociology, 54
(1), 63-81. doi: 10.1080/0007131032000045905