We often have to face things in illnesses that feel bigger than we think we can manage, yet somehow we balance the fear with the hope and find humanity in the process.
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 can imagine that whether or not you’ve been faced with a diagnosis, you can relate to the notion that waiting for a procedure can be a stressful event. The language of procedure
, treatment —
it is all so callous, cold and unfeeling. As you face down the monumental moment that is surgery, all you have are ... well, feelings.
It’s a precarious position to be in, the position where you open yourself up to perhaps one of the most physically vulnerable situations. Imagine for a moment that you put your life (literally) in someone else’s hands. You interview them to see if you deem them worthy of taking on the burden and gift that is your life. You ask questions and get answers that you most often don’t understand because where their expertise has been honed, yours is lacking.
You fight hard to hear your intuition scream at you as you make various decisions that teeter you on the fine line between living and dying. You inhabit that space seamlessly, as though your body knows what to do and as your heart and mind struggle to find some solid ground. You decide which adventures you can embark on on any given day. You manage time out of the house with carefully timed naps, perfectly rationed pain pills and quiet time with a healing song and a soothing candle. You manage your day just like you will learn to manage your expectations of what the other side of surgery will look like. It is an uncertainty that you must learn to be comfortable in, an uncertainty that is daunting in what it refuses to name.
That's what it feels like to me. To stand on the precipice of another health procedure
feels like a lot. The questions I get asked feel tired. The answers I give, even more so. The way I interact with what I am going through is a combination of avoidance and head-on collision — a mix that doesn’t make any sense and often leads to tension that I cannot understand.
There are flashes of anger that don’t make sense to me as they happen. It is as though I watch myself at a distance, lashing out against the nothingness that a diagnosis feels like. There’s nowhere to direct anger when your body has betrayed itself. Other times, I feel so much joy that I momentarily forget the condition that plagues me each day, until a sudden movement sucks my energy and steals the breath from my laughter. My body is used to going through the motions. My body has adapted to the process of grief that comes with unexpected pain, it has found an uneven rhythm with the pain. My mind and heart feel the familiar space of fear and pain and retreat into their darkest corners, only peeking out to glimpse at the slivers of light that peek between the curtains of my imagination.
I would like to be the type of person who finds comfort in the notion that this is just some kind of “accelerated path towards enlightenment” (I heard that in a self-help video on YouTube) but I don’t believe that. I don’t believe that we suffer so that we see suffering. I don’t believe that we suffer so that we learn some hidden magical lesson that lies on the other side of an excised tumor. That doesn’t mean we don’t learn those lessons, but it doesn’t seem to me that every negative must carry with it a positive. I don’t think we should assume every problem can be fixed or every disease can be cured. Despite this, I will often hope for a cure, for resolution.
All of this is not to say we shouldn’t honor our lives and try to enrich them with both love and time, it is just to say that sometimes we cannot change the circumstances of the space we inhabit. So rather than fight that feeling, we must feel it.
We must feel it.
A darling friend recently shared wisdom with me, as she stood in complicated grief about the passing of her mother. One of the articles she sent me talked about how some things don’t exist to be fixed or to bring us some lesson of enlightenment. Rather, they exist to be carried. We all carry things throughout our life that we cannot fully come to terms with as they happen.
Our world tells us to be mindful, that engaging our present moment will allow our lives to be.
It’s a beautiful sentiment: to accept and find acceptance of our circumstances, to inhabit the life we have without regret for our pasts and without fear for our future. This moment is as it is, it will be what it will be. But it doesn’t change the pain that we encounter in the moments of illness. It doesn’t change the suffering we must take on. In these moments of waiting for surgeries, I see the world around me confuse awareness and acceptance with a desire to fix, to heal, to patch up.
Sometimes those moments explode. They are the culmination of panic, fear, hope, joy, laughter and pain — all carried in tension with one another as we seek to inhabit a world that is not built for the dying, but rather a world that is built to run from death. As the moments creep up on us, we retreat into macabre jokes about death and dying. Deflecting fear with laughter, we often find the moment has taken us far to the opposite spectrum of feelings. We tell sad, nostalgic stories and cry as we recall the ups and downs of this marvelous journey of life.
Sometimes we don’t feel the moment explode until we are firmly within it, watching the time tick by until that moment we are on the operating table, naked and in fear, trying to run from death with the rest of the world but knowing it is on the other side of a cut that goes too deep or a bleed that lasts too long. Sometimes we don’t realize the moment has exploded until there is no time left to share life and love and longing. We hope that in the brief years of our life we have shown that life is not short — it is long in the way we live the moments we receive. We hope that we have shown love and forgiveness, shared peace and light and even in the anger, fear and pain, that we have felt it all.
The moment explodes and we stop running.
The moment explodes and our feelings no longer must hide behind the fear of a life unlived. Yes, my illness took a lot from me. It took my hearing, my fitness and it left me with pain.
But I’ve felt it all ... every moment.
In that awareness of what my heart, mind and body felt, I truly lived. I will face my eighth surgery in a few short weeks, but in the meantime, you'll find me performing that perilous balancing act — the one of expectations, hope, faith and reality ... all rolled up into an untidy little body.