It can be hard to name our fears, especially when we are worried that others don't share them or that they will make us feel like a part of our community. In sharing, we can name stressors, activate healing from those stressors and give our bodies a chance to cope with all that has happened to us.
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.
Regardless of where you stand politically, this election season and for some the results of the elections, have been particularly stressful for many Americans. For Americans across the aisle, there seems to be one commonality: fear. This is especially important when thinking of patients, patient advocacy, possible legislation to improve or facilitate medical care, and much more. So, all of the events of the last week, months and year have been stressful for anyone who has followed the election. Politics aside, it is well-documented that stress can inadvertently impact the ability for patients to heal from medical procedures, treatment, and major disease diagnoses. Aside from inhibiting mental health and well-being in recovery, stress can actually delay or inhibit physical healing. I for one, have had 10 major brain surgeries, each of them coming with many cuts, many scars. The National Center for Biotechnology Information published an article that notes “psychological stress can have a substantial and clinically relevant impact on wound repair” and they note the without appropriate wound healing, overall healing cannot fully occur.
It is hard, when treatment, recovery, and healing are so time consuming to begin with, to keep stress at bay. Healing and recovery, for those that get the privilege to recover at all, are challenging, full-time endeavors. Adding social, political or other stress to the process of recovery, can induce anxiety, isolation, and impede physical recovery.
I am currently “recovering” from the most recent craniotomy that was intended to fix a Cerebral Spinal Fluid leak that was caused by removal of my brain tumor. I spent the last 4 years of operations keeping my body predominantly in fight or flight mode, always ready to react, always tense yet always powerful. I struggle now, as a person who is apparently cured, to bring my body out of that complex fight or flight response. I also struggle to return my interests to calm evaluations of the world around me when so much was so tense in my life for so long I will be fine in one moment and the next a seemingly mindless task will bring me to my knees, complete with tears, a racing heart, and endless apologies for crying without a clear reason why.
I think one of the reasons that recovery, and subsequent re-entry into social spheres, poses a challenge is that I have spent so long with a life that is contingent upon the success of a procedure, the positive outcome of a medical exam, or my careful and mindful movements through life, it is hard to inhabit the space or spaces I used to. I think back to who I used to be, what I used to behave like. I was grateful and thoughtful, but I probably focused a bit too much on what didn’t matter, the shallow trappings of life and what not, and less on what did. I know what matters now: health, family, love, and humanity. Yet, the weight of caring, of thoughtful and mindful engagement in my life, my family’s lives, in society, at work, all of those things can be hard to bear when for so long most of my focus was singularly targeted at one thing: survival. I feel myself respond to things that don’t matter or perhaps matter less than living and dying with the same, reactive, quick responses I would give the imminent threats of tumors and leaks. I feel myself responding with a furor that perhaps doesn’t always need to be there. Then when the furor does need to be there, when there are issues that are near and dear to my heart, my life, my livelihood or my safety, I often fear the furor that is necessary is just perceived as the lamentations of a sick woman, or a woman, who like the boy before her, called wolf.
So what do we do? I’m still working that out but I have a few ideas. Life is stressful, our lives are hard, we don’t agree, we are often not legible to those around us, even those who love us the most often find our physical and mental health confounding. In a recent “Brain Pickings” article Maria Popova writes that “when trauma, injustice, and cultural conditioning smear our vision with blood and tears, we begin to lost sight of this essential, life affirming truth…” This truth, as Ms. Popova notes, is that we are each other’s only hope. We may not always fit into the cultures we exist in, and with illness, our bodies may no longer fit into the constructions and socializations we had previously valued, so we act in fear, we respond to fear, we are afraid. Our wounds, our scars, be they ideological, mental, or physical, make us afraid. So, we must name our fears, talk about them, tell the people we love that this is what makes me afraid. We should abandon the thought that just because a fear comes from a trauma, that doesn’t make it unfounded, we should not discount what is in our hearts. That said, we should also note that fear can be faced and fear is best faced without the pressure of doing it alone.
Facing our fears doesn’t have to be a solitary task. We can share, cope and testify to our fears together, so that we cultivate communities of strength. We should share the good with the bad, the beautiful alongside the ugly, in order to be seen and to see people as nuanced and multifaceted.
I have written before that I am not my disease, I am not the sum of my medical procedures, I am a person, complex and full of life and hope and love. When I am feeling stress, and feeling that stress inhibit my recovery, I remind myself that I am more than what is happening in that moment, and thus I can respond with more than the fear I feel in that moment. I recently went to my first yoga class in several years, it was a challenge for me for physical and emotional reasons. After the class, I posted the following to social media, “I used to teach yoga, I would fill the room with intentions of joy, articulating strength and power in my movements. I gave it up about a year into my PhD, the pursuit of knowledge eclipsing my time for all else. Soon after that I found my brain tumor, Herbert. My life soon became consumed with tests, fear and varying levels of physical and emotional turmoil. Though I've always had an incredible support system, I have struggled to find my feet in the past few years. For the last two years after I faced surgery after surgery I focused on two things, living and not dying, two very different and equally complicated things. With the news that surgery is behind me I am now on to the hardest task I have ever faced: healing. I struggle every day, I struggle to get up, to move, to look in the mirror, even sometimes laughing too hard will trigger a headache that takes days to recover from. Though I have moments of reprieve where my pain wanders away and I look in the mirror and joyfully think, "Boy! I'm still so cute!" Some days are hard. I fight back tears in daily activities, I muster strength before getting out of the car to go to work each day, I straighten myself up and shore myself up, preparing to muscle through with all that I am. Even so, at times, I live in fear, a fear I precariously manage with a variety of physical and emotional therapies, but a fear that despite the petitions of those around me that, "there's nothing to be afraid of," persists and takes the wind from my sails each day. Today, after weeks of penciling yoga into my calendar, I faced one of my fears and took a yoga class for the first time in 4 years. I breathed deeply with the room of strangers, staring hard at my body in the mirror, imploring my mind to take over for my missing balance nerve, to compensate for my lost physical strength with the grit that replaced it. I felt a wave of emotion come over me as I set my intention and, with as much grace as my lopsided body could muster, sank into whatever poses were accessible to me. I did my very best today, and fell into savasana as the yogi's words waved over me, "may you be happy and free, namaste." #btsm#braintumorlife #yoga” I posted that not be a part of the self-aggrandizing space of social media where I celebrate my triumphs of mind over body, rather, I shared that because I knew that in naming my fear, in being honest with my vulnerability, I could also share and celebrate my strength. And, I could do it with a community of support.
No matter how you choose to connect, my urge to all those feeling stress, is to share, share all of yourself, and little by little, we will face our fears, and we will heal.