My Disease Doesn't Make Me a Hero. I Am a Hero.


Sometimes it seems like being heroic after you get sick is expected of you. To me, putting goodness into the world, in sickness or in health, is what makes heroes.

There’s a line in a Josh Groban song that strikes me sometimes when I am running. He says, “Turn your darkness into light, turn your silence into sound.” I am always struck at how one would turn the silence into sound, because in my moments of solitude, I seem to look to others to do that for me. To take my silence and let it flourish into whatever it is that is trapped within me.

On Wednesday, I had a radionuclide cisternogram, a test that involves the placement of something called pledgets into your nose, a lumbar puncture, a radioactive isotope and a series of follow-up PET scans over the course of two days. It is meant to confirm a cerebral spinal fluid leak, the current diagnosis I have, and the thing my tumor left me as a souvenir when it was carefully (though perhaps not carefully enough) extracted from the spaces next to my brain. I’ve had the test before, roughly one year ago. I hoped once I confirmed to the doctors that my spinal fluid leak was not a figment of my imagination and that I was not, in fact, crazy, I would never have to endure that pain, that fear and that anxiety again. Several surgeries later, the consequences of my original tumor still haunt me each day, and now, the doctors again need proof. What is baffling to me is that my day-to-day is not proof enough. My vision fluctuates; Spinal fluid drains consistently out of my nose, leaving me in pain and listless; I am nauseous a lot of the time; I am plagued by fatigue; I feel a sadness in my bones that is hard to shake; I worry about my support system tiring of my never-ending saga, and each night, as I put myself to sleep, I gingerly move, hoping that the quiet of sleep doesn’t bring searing pain.

I try to just shut up about it. No one likes a complainer, even if the complaint is justified. The side effects of my health are by no means catastrophic. Having lost many friends to tumors much more deadly than mine, I do consider myself one of the lucky ones, and boy do I love living. That said, some days are hard. Recovery isn’t easy or fast, and just because from the outside it may look like it has occurred, that doesn’t mean it has.

Today I went for a run to distract me from the throbbing in my head and the fast pounding of my heart. It was hot and and hard, and my legs dragged behind me as I walked at moments to dry the spinal fluid from my face with my tank top. As the music blared in the one ear my tumor didn’t take with it, I felt myself fighting like hell to survive this step, then the next, to survive each breath. I saw with each step the reality that no life is easy. No one skates by, we all must strive.

I’ve been told I am inspiring; I’ve been told I am a hero. I am deeply and truly honored when people tell me that, though I would never have imagined I would save anyone. But when I take stock of who I am and how I inhabit the world, I think I’ve always wanted to be a hero. Not in the self-aggrandizing super hero sense, where I come to the aid of anyone at any time without call, always knowing where I am needed. Rather, I’ve tried to live well, to be brave, to get up each day in this complicated world and put my best self out into the world, to be good and kind and to show up for all the people I can in the best way I can. I was always this person, though I have grown, I have not changed in any substantial way. My illness didn’t make me a nice person, treatment didn’t make me a good person, and fighting to stay alive does not make me a hero. If anything, treatment has made me a bit self-indulgent and a little selfish. I’m a hero because I fight for my life and for yours. I am a hero because I live each day with my heart on my sleeve, ready to be vulnerable and radically honest with myself and others. I am a hero because I do my very best. I do my best to turn silence into sound, to make the world sing for myself and others, even when the song we are called to sing is sad or hard. My tumor didn’t make me brave, I made me brave. I woke up and faced it and let it be a part of me. I also didn’t let it be all of me. I’m still here, still running, still working, still loving.

Wednesday’s exam was hard and brought with it the reminders of a medical system that often forgets that patients exist, even as we sit patiently in hospital rooms. I was crying, proclaiming that I didn’t think I could keep going. I didn’t want the test. The doctor who was supposed to care for me was out of town and I felt let down by the people who were supposed to make this side effect go away. I had been waiting for hours with strange cotton pledgets up my nose and I just wanted to call it. Who cares if I have a cerebral spinal fluid leak? I couldn’t do it, after four years, 10 brain surgeries and more cuts in the rest of me that I care to count, I had hit my wall. I wanted to go home. I wanted to be done and start over. As I began to cry hard, the nurses took to my side, they found a doctor who was willing to step in and take over. As the fear of a spinal tap gripped me and mixed itself into the complexity of emotions I had felt that day, I felt myself cry hard in a way that I rarely do for myself. I came back to the nurses’ station after the radioactive isotope was flowing through my back, and the nurse handed me a necklace with visible wear.

“The patient in the stall next to you heard you crying. She wore this through her cancer treatments. She’s a regular here and wants you to have this.”

It was engraved with the words “Be Brave and Keep Going.” I asked where she was so I could go give her a hug. She’d already gone, and tears filled my eyes at her kindness. She wanted to get me over my wall. I clutched it tightly in my hand for the rest of the day. I made it through the tests with the support of a kind stranger, my family and loved ones. I don’t know the results of the test but I made it.

That day, that woman was my hero. Not because she had cancer, because she shared her heart with me, she encouraged me when I couldn’t figure out how to move past the moment I was frozen in. She saved me that day because all of us, even the loyal, beautiful, loving people in my corner, were just too tired to do so.

That day, my tumor didn’t make me brave. I didn’t make myself brave. My hero helped me find a way to be brave.

So here I am now, with renewed hope, determined to go out into the world and turn the silence into sound. I am also determined to go within myself, to see my own silence, and to make it sing. I am going to, as my hero told me that day, be brave and keep going.

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