When a diagnosis begins to improve, it is hard to reconcile your identity as a patient with your identity as a whole. Grappling with questions of who you are after having been diagnosed with something life altering can be both profound and challenging, and leave you a bit, well, ambivalent.
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.
Yesterday was the third anniversary of my eighth brain surgery. It seems peculiar to commemorate the anniversaries of what I might term "medical milestones" when there have been so many procedures that the dates of them, along with their distinction, fade into the periphery. Yet, somehow when I realize the date falls on one of my many brain surgeries, I cannot help but feel my stomach tighten as my shoulders bristle and I wonder how it is I have survived out in the world of the healthy since then.
I don't know if this happens to other people who get sick, but even though I've been an active participant in my life for the last few years since my surgeries – and indeed since my diagnosis – I feel a space between me and everyone else. Like, if people meet me and they don't know what I've been through, can they ever really know me? I wonder how I've made it so far, and I often feel like I don't know how to be well in this world. It’s just that I spent so much time figuring out how to be sick, that I feel like I must unlearn that lesson to re-enter the world of the hard-working, hard-partying, regular people. It's only when I stop long enough to realize I've been being well in this world for a while now that I feel a deep sense of ambivalence. Is this wellness? Is this recovery? It certainly doesn't feel normal, but I suppose it feels routine.
It is three years since brain surgery number eight. Since then I've had more pokes and prods and two more brain surgeries. I still go to physical therapy every week, I still see a neurologist and neurosurgeon regularly to make sure I am OK, and I still catalog my pain. I am always careful and wary of the possible side effects of the medicines that help me manage that pain, and I am cautious of my body in space. I try not to walk to hard, or turn to fast, or bump into anything, as though pain lurks around every corner. I still conceive of myself as "needing to get back into working out," though I walk a mile and a half to work each day and work a full-time job. I still think of myself as anxious about recurrence despite stable MRIs. I meditate each week with my pain meditations, though my physical pain, even while chronic, is relatively under control and withstandable.
It is three years since brain surgery number eight, but I remember it like it just happened. I remember the frantic morning before that brain surgery, I desperately clicked away on my phone trying to buy concert tickets to the upcoming Adele show to give myself something to look forward to in recovery. I went into surgery not having been able to secure any tickets to her sold-out performance. Though I might have wanted to take that as a sign of what awaited me on the other side of the anesthesia, the doctors patiently waited to inject me with, I opted to put it out of my head as I was wheeled back to the operating room. Even without Adele’s sweet melodies to look forward to, I still recovered, or I suppose I still am recovering. When I look back at the pictures that we took that day, silly selfies with doctors and nurses taken in an attempt to add levity to a heavy day, I am taken right back to that moment: the fear, the anxiety, the dread, and, yes, the hope. But I also see the woman in that photo; she looks like me, she smiles like me, her eyes even have the same nervous twinkle as mine, and yet she seems so far away. She was a version of me living a life in hospitals that are both familiar and foreign to my current day to day.
It is three years since brain surgery number eight and I still am stuck in between sickness and health, but I suppose in my ambivalence I am learning what it is to truly be alive, in all life’s contradictions.