Living in the Land of the Healthy

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.

BY Samira Rajabi

PUBLISHED December 19, 2018

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.

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