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.
When stuck in this space, it is tempting to hide from life, but with all the beauty in the world, it doesn't serve any of us to hide.
There is a space between sickness and healing, an in-between space where you're neither sick nor well. You are in process, being made on your journey towards wellness, or more aptly on your journey to whatever future circumstance that will befall you. In that space, you learn to make do. You ration your activity, so you don’t aggravate your pain, you ration your pain meds so you don’t get too tired and your whole life becomes a precarious balance of your expectations and your reality. In that space, when you are so focused on managing, you can almost forget what it is that led you to manage your circumstance at all. You forget the catalyst that caused you to have to change the way you were living. For me, it was a brain tumor. For others it is cancer, and for others it is something else, some other experience, some other trauma. Whatever it is, our life experiences propel us forward, snatching away our abilities, our confidence and our day-to-day patterns and then slowly return them over time, trickling in like a faucet with a leak. This is the nature of our precarious and fragile human existence. This is the balancing act of life. This process isn't easy, it isn't straightforward, and it can feel uneven, taking steps back even as you inch forward.
That's why my journey has been, anyway. I find myself in between things all the time. In between sick and well. In between pain and no pain. In between confident and afraid. In between satisfied and worried. I am constantly juggling the various states of my life and I don't think that is just because of my brain tumor or my brain surgeries, I think that in a small way it is just a run-of-the mill coming-of-age story. I think that as we concretely step into adulthood and then veer towards middle age, our worries and our passions start to blur, and what is left is a balancing act of what could have been, what is, and what gorgeous possibility sits on the horizon. That's how I choose to see it anyway, there is the coulda, woulda, shoulda, but then, after we're done ruminating on that, there is what could be. Sure, it could be disaster, or it could be everything we've ever wanted, and why not dare to dream for that.
After I got sick I resisted setting concrete long-term goals for a long while. Sure, I maintained my dedication to finishing graduate school and writing my dissertation, but those felt short-term because I was steeped in them. I didn't want to have a bucket list of all the fun, magnificent and beautiful dreams I could have, because I didn't want to fail at them. I framed this to myself at the time as a pragmatic and living in the moment, when in reality, it was a hiding in the moment and using the mindful language of "being present" to hide myself away.
As my pain management techniques have started to become more effective, I have found myself wanting to try to be in my life more and come out of hiding. And, during this same time, more and more tragedy has struck my family, and I have found myself wanting to live more. The urgency of my life being in my mind more than when my body was laying strapped to a bed in the ICU. The mortality, fragility and vulnerability of my family indicated to me that it was not a sign of strength to hide from life when I was sick. I am acutely aware that my comfort with my own mortality that came from the reality of illness is manifested in new ways when I see diseases threaten the lives of so many I love. My awareness of death has left me viscerally aware of my buoyant life.
So, I dare to dream, to imagine possibility, to think of what could be, where I could go, how tall I could stand and how high I could fly. These dreams are not all big and loud. I still live in defense of a quiet life. I live in a desire to live fully, but with simple satisfaction at the story that is mine to tell. I don't imagine living fully to be living a life of grandeur where everybody knows my name. Instead, living fully is seeing what is around me — embracing it, smiling at it and seeing all that is possible in it. I feel myself moving towards this each day.
Right now, for example, I feel I am trying, in just telling my story. I am siting on my sofa typing away with my dogs quietly snoring next to me. My partner is out selling real estate, helping a young couple find their first home. We have a quiet life, even boring. We have beautiful friends, devoted family, and though our year has been peppered with loss, family battles with cancer and the changing winds of life, we are together, safe in a warm home, with two sweet pups to greet us each day. We don't hide from life, we try to grab joy when it makes itself available to us. We exist in between our sadness and our joy, and often in this limbo we tend to get lost in the minutia of the everyday, forgetting the catalyst that caused us to change the way we were living. And then our memories, like a flash of past suffering frozen in time, surface and remind us that though we have suffered, we have come a long way. In those moments, the balancing act between sick and well, satisfied and worried, and even life and death doesn't feel so hard, so big, or so scary.