Living through illness is never easy. It is so tempting to let diseases and diagnoses take our energy and make us bystanders in our own lives. But if every day of our life — even when full of suffering — is an adventure to be lived, how can we be a part of it? Because we must be a part of it.
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.
Illness is a solitary endeavor. Being a caregiver is, for many, a solitary endeavor as well — those who have risen to the occasion of caring for others often find isolation. This isolation is created from an inability to truly commiserate with the sick body in front of you and an inability to relate to the world around you; a world that has become distant in its health, wellness and unrelenting push for the sick to fight, to heal, to recover and return to normalcy.
The fact is that there is no way to truly be sick with someone you love. You can be empathetic, you can be supportive, you can be mindful of their suffering, but you cannot be sick alongside them, nor should you be. There is often an articulation of guilt around illness, from those who are well. A sense of sorrow that their good health cannot cure the ills of their suffering loved one. There is a sense that life must stay frozen in time while one partner in a partnership is in pain, that life will resume with the return of a clean bill of health.
I’ve found that in fact the world doesn’t stop when you fall ill. I’ve found that life has no pause button to press when life is difficult and our struggles seem more than we can or are willing to bear. I’ve also found that we don’t get to stop calling the days we live our lives just because they don’t look or feel how we thought they should or, more accurately, the way the world makes us feel like they should. When you have a diagnosis of any kind, you live with it, you live through it, you live alongside it and — until you cease to be a part of this world and graduate to the next stage of existence — you get to live.
I recently read a book that has stayed on my heart since I read it. It is the memoir "When Breath Becomes Air" by Paul Kalanithi, a neurosurgeon who is diagnosed with terminal cancer. As I read the book, I felt so much of myself in the words that came alive off of the page. I felt as though I had found a kindred spirit in the soul of a man who no longer exists in this physical, embodied world. I quietly mourned him, sending silent vigil to his family in my mind. Reading and re-reading his words as he grappled with mortality while trying to appreciate what kind of life he’d want to continue to live.
My condition, unlike his, is not terminal. My surgeries are risky and the treatments will cause me to lose various abilities and strength, but I can rest reasonably assured that my life will continue on beyond the immediate term. Though that doesn't take the fear of death away, not after multiple craniotomies and chronic pain. The rational knowledge that I am not dying in this moment doesn't eclipse the visceral fear that comes with confronting mortality.More important, though, is the question that undergirds so much of Kalanithi’s book is one of quality of life: What kind of life is worth living? We don’t get to determine whether or not we get sick in this life, we don’t get to determine if we will have pain or suffering, and none of that is the point. We do get to decide how we treat our bodies in the interim, what matters to us and how we will spend our time.
Yes, the world will constrain us in various ways (financial, spiritual, ability, access, etc.) but within those constraints, we can choose how to spend our time, how to frame our expectations and what kind of life — however long or short — we get to lead. In my recent health, I have been left grappling with many decisions about what treatment path to follow, which doctor to trust and which route will best enable me to live my values and priorities in a meaningful way.
I find this process both empowering and stifling in the way it makes me feel the breath catch in my throat, as my mouth goes dry and I fail to find any word to articulate the life I want or the treatment that feels right. I lose myself in clinical terms and forge ahead asking the same questions over and over again, hoping one phrasing of the answer will strike me differently. I struggle to imagine side effects and possibilities and think in the future tense. My body stays firmly planted in the now, in today, in this moment, losing all sense of my future self.
Kalanithi notes that “one of the early meanings of patient
, after all, is ‘one who endures hardship without complaint.’” I often find myself smiling back at puzzled doctors, consoling them in their sense of failure that they haven’t yet found a suitable answer to my problem. They seem sad that they cannot provide me with certainty, so I offer them whatever hope I can muster. That said, I have lost the unrealistic optimism that causes patients to reframe themselves as warriors, fighting their disease to the death. Instead, I see my tumor as a part of me, and its consequences as part of the many consequences of living ... of existing.
While to some that may seem like resignation, to me, it is hope. It is a framework that enables me to work fervently and tirelessly towards the things I love, with whatever time I have left. It is a framing of mind that tells me not to wait to live for some perfectly healthy life. It is an articulation of me choosing the things I value in this life. I value living. I value my life, even when it is shrouded in a pain and loneliness that no one in my beautiful circle of support can fully apprehend.
In "When Breath Becomes Air," you see a man grappling with the changing promise of his future, the unrealized potential of his mind and body, and then you read acceptance. Though it is shrouded in sorrow, you feel him accept the life he has had and the imminent death he must face.
He writes, “The fact of death is unsettling. Yet there is no other way to live.”
Robbed of his future, he doesn’t not squander his present, his words haunting my every day: “until I die, I am still living.”
The world around me didn’t stop to mourn the various abilities and energy I lost with each surgery. The world didn’t stop until I figured out how to cope with pain and the uncertainty of future surgeries. The world will not stop as I try to determine what I value each day and how I want to balance living with various complications from a brain tumor.
In that sense, illness can be such a solitary endeavor. There is no one who can do the work it will take for me to cover the complicated, rocky terrain of my life. Though I know my life is temporary, and my time with people I love is momentary in the universe, while I live — regardless of how untidy and unruly my broken and sick body may be on a given day — I will live. I will be an active participant in my own life and I will go on turning with the world.