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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.
Every six months, I get an MRI to check for recurrence or growth of my brain tumor. This is one of those times. To prepare for tomorrow, I try to remember not to forgo today.
It is 10:04 p.m. and I am sitting at my computer writing this. You will likely not read this at night, nor will you know when or how these moments figure into the day, but for me, I will remember them all. Every sound of my fingers hitting the keys, every flicker of the lights above my head, every flash of the screensaver on my TV. I will remember them all, just in case. Because it is 10:04 p.m., and tomorrow I have an MRI. I have avoided medical tests lately; I’ve stopped with the pain injections, fearing they were masking whatever it was that my body was screaming at me. I don’t go to physical therapy because I haven’t found one since I’ve moved. I have no doctors here so there are no check-ups and as my medications run out I simply have let them, knowing they weren’t vital to fixing any problem, they were all just given to mask a symptom. With all the change and transition in my life, I was able, if only momentarily, to forget my permanent status as a patient. I was able to go out into the world and masquerade amongst the normal bodies — the bodies that can hear and see clearly, the bodies not in pain, or the other bodies who were masquerading too. But MRI day just brings it all back.
I sit and I listen to the sounds, and I smell the smells, and I look around and take in the quiet of my evening solitude while I try to come to terms with the fact that the unknown doesn’t have to be bad, and not knowing what an MRI will show doesn’t have to mean it will show the worst, and I remind myself that one or two bad outcomes don’t stand as premonitions for future outcomes. But I memorize these moments, these feelings, these assurances I give myself, just in case I need them — just in case the worst does come to pass.
The truth of it is that this MRI will probably be fine. The last one was stable, tumor (or scar tissue) was there, or in other words there was an enhancement, but it was stable. Stable is fine. Stable is jobs, and friends, and adventures, and successes and failures that don’t revolve around what my body does. There’s also the possibility that it is not fine. It’s a slim possibility, but it’s a possibility because if it wasn’t at all in the realm of imagination, tomorrow would not be MRI day. What that possibility may mean for me and my life and my newest endeavors is hard to say, and I know in my rational mind that I don’t have to confront that unless it happens, and honest-to-goodness, it probably won’t.
It was close to a year ago that my doctor told me there was a 98 percent chance that I was totally fine. I remember springing my hands into the air and yelling, “I’ll take 98 percent!” I remember rejoicing and then panicking about my reentry into the mortal world where discussions are not about minutes walked without feeling nauseous or the scheduling of medical exams. I remember knowing in that moment that I could go back to the world. So right now, I am trying to capture and hold on to that feeling despite that lingering fear that this MRI, like so many of the others, would show me a future I have worked hard to keep in the past.
I try desperately to stay present.
It’s hard to do sometimes. This morning as my husband and I set about a particularly arduous task, going to the DMV, there was a public radio ad for the neurosurgical department of one of the local hospitals. The ad was remarking that patients no longer needed to leave South Jersey to get complex brain and spine surgery, that the most complicated surgeries could happen anywhere. “Indeed they can,” I thought to myself as I felt my eyes well up with tears. “Too soon,” I muttered trying to make a joke of a moment that reminded me so fiercely of my fear, pain and recent past. As my husband gazed at me not sure whether to laugh, I burst out with a shaky voice, “The radio cannot just throw around brain surgery willy nilly. It’s not OK!”
Apparently the existence of hospitals in more locations where people could get the exact surgeries I needed so many times felt like too much to bear. And not because I don’t want those hospitals to exist. In fact, I loved knowing that more people can get more help. It’s just because it reminded me that people are still suffering, not just with brain stuff, but with all kinds of stuff, disaster and war, and sickness and tragedy is everywhere, and it may even be here, with me, again. I wasn’t ready for that reminder of what I know too well. I was barely ready to go to the DMV.
I knew my MRI was on the horizon all day. It lingered over me, reminding me not to plan too much into my day. It is an inevitability in my life. It is not a choice — not if I want to live. If there is anything all of the hard work I've done over the last year has shown me, it is that I want so desperately to live, to love, to work, to thrive. I know not what to do with all these feelings, so I sit here trying to memorize the moments, savoring them and letting my senses be indulged with the mundane regularity of the tasks in front of me. I sit here alone, with the lights dimmed, the dogs leaning gently against my feet, and I listen to myself type and feel grateful for the present, grateful for the rain gently tapping against my rooftop, reminding me that my life does not hinge on tomorrow. Rather, my life is happening right now.
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