Living in the Land of the Healthy

December 19, 2018

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.

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.


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