It's one thing to know you have to get a certain treatment, it's another thing entirely to wait for it to come.
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.
Finding out you have some kind of illness — a tumor, cancer, a degenerative disease — that's one thing, and it's a daunting, life-altering, difficult thing. While there is a lot to say about that, about the way that news changes absolutely everything moving forward, there are other, smaller moments that come up that can be just as challenging, exhilarating, frightening and interesting to deal with. One of those moments is the moment right after you decide on your course of treatment.
Imagine for a moment you are 26, walking to school and you feel your head start to spin out of nowhere. The fear of that moment isn't as gripping as you remember it, you rationalize the dizziness to yourself. You tell yourself it is nothing but go to the doctor just to be safe. After several months of waiting, testing and insurance approvals, you finally figure out the cause. You have an acoustic neuroma (note: you can change the words acoustic neuroma and all the personal details to your very own — the outcome may still be the same). It is daunting and scary but at least now you know. You know why your body seems to be betraying you. You know why you don't quite feel how you imagine you should or could. Once you know you visit doctor after doctor, learning about all of your options, learning about all of the paths forward. Then, you decide. At least that's how it went for me.
For me it was a decision to get surgery. I made the decision to allow a skilled surgeon to carefully pull back my skin, drill through my skull, expose my brain and, with it, my humanity. I had chosen. There was a certain freedom that came with that choice. It was empowering to know that even if this choice leads to a failure of catastrophic proportions, I had made a choice based on knowledge, facts, and intuition. I had decided to take control of the uncontrollable. I had weighed my options and decided to act. It's not an easy process but once you come out on the other side there is a comfort to knowing you can stop thinking so hard and let the experts
guide you forward. So then there is a matter of administrative work: scheduling, coordinating, getting a dog sitter, whatever it may be. OK, I’ve done all I can. Now, we wait.
My first surgery came roughly two months after I had decided on that course of action. I remember those months as being full of conflicted emotions and desires. The fear of impending doom looms over every moment so I would get caught up in that familiar, though often problematic and uncomplicated, narrative about living in the moment, living your dreams, shirking responsibility and flying on the wings of adventure. I vacillated between this pressure to live a mysterious life that I somehow imagined to be more beautiful than the one I had and a desire to maintain the life I had, that on many levels I recognized as perfect in all its imperfections. I tried to quietly but effectively tell the people I loved that I loved them without getting the eye rolls that hide the fear they also have, that I will disappear. I remember wondering if I should make plans for after surgery. Will I be strong enough for this? Or that? Or anything? Will I even live to find out? I dismissed my own very valid fears as the melodrama of a twenty-something who’s life has suddenly transformed to the plot of a boring Lifetime channel movie. I went about my routine, plugged away at my PhD work. The subsequent surgeries held much of the same, though the certainty of surviving each one gave me a muted sense of invincibility. That said they also brought the very real knowledge of the pain and challenges of healing. Again, I found myself constantly conflicted between a fear of a life unlived, or underlived, and a desire to stay the course; to keep my life the way it is or was.
Now, in the weeks before my sixth craniotomy, a procedure to repair a CSF leak, I find myself stuck in the same conflicts. I have spent considerable time in the past few weeks applying for new jobs in new environments that I think will make me happy. If there is one thing this position as a sick person has taught me, it is that we deserve to pursue what makes us feel alive and whole. So I have done that, I have taken risks to try things I know I would be good at. Then, in those private moments at home alone or with my closest friends, I feel that fear that I will be unable to deliver on these dreams take me over. I fear I will let people down — most of all, myself. I fear for how I will come out. I fear that I have forgotten in just a few short months what it means to be strong in the face of pain. I know my course of treatment, I know what I must do, and now I must wait.
It is the waiting that teaches us who we are and who we will emerge as. In this time of waiting, with all of its conflicting ambition, fear, forward motion, and immobility, I discover myself. I discover my complications and how truly complicated it is to be in the category they call sick
. It is in the waiting I learn to let go of the life I had, telling myself with full truthfulness that it may not be the perfect life for me. I also learn to let go of the narratives we are fed so often with illness, that it will awaken us and lead us to the life we were always meant for. I let go of all the ideas I think I should have about myself and I grab on to my own complicated truth — the truth that I am often in conflict with myself, the truth that I just can’t know which of my ambitions I will actualize in the future, the truth that I am complicated, beautiful, unapologetically me, and the truth that I will come out on the other side of this, whatever that looks like.
If you find yourself in this space of waiting, I hope you explore what all the anxiety and hope means to your life. I hope you find your complicated, beautiful self.
So now, we wait.