I Don’t Know How to Write about Brain Tumors

I don’t know how to write about brain tumors.

I guess it’s both all about the brain tumor and has nothing to do with the brain tumor at all. There is no cleaving the tumor from the person, while it is also true that a person isn’t their diagnosis.

Like how life changes after a doctor tells you that you’re going to die, and then you call your family and friends and tell them you’re going to die, and you realize after a couple calls, here we are. Where’s the parking ticket to leave the hospital garage? Life goes on–life without you goes on–and that’s well and good, but also, what the hell?

Have you ever made breakfast with acute knowledge of your own mortality?

Whitney wondered less than rhetorically, “I’m grateful we’ve had these four years together, but how do we live another four years like this?”

She asked that two years ago.

I can’t point to just what it is, or, it’s a lot of things, but there is no Adam that exists before his diagnosis. Memories we may not hold, but the stories that are their surrogates are what is left of that man. Pictures in a Facebook album called, “The Dark Ages,” that includes a grainy picture of me wearing my hair in a man-bun, holding a Motorola Razr ©. Everything changes, and nothing changes at all. There is an idea I’m trying to get onto: It’s about the brain tumor and has nothing to do with the brain tumor at all. It’s about life, maybe.

Writing about my life is writing about the brain tumor experience. Here is what I mean: Our neighbors have three boys, like we have three boys, and each of theirs are spread out a couple years apart like ours–though, their stair-step kids are each a couple years younger than our stair-step kids. Anyway, their kids are learning to ride their bikes, and I say, “Oh before my diagnosis, I used to commute to work on my bike,” gesturing to the road bike hanging from the ceiling-mounted brackets in our garage, thick with dust and cobwebs. Is that a story about a brain tumor or a story about me? The bike mounted in the garage is about a brain tumor.

See, I don’t know how to write about brain tumors.

There isn’t anything that isn’t about brain tumors anymore. (That’s funny. It’s a double negative, like when the oncologist said, “It’s extremely unlikely that you will not have a recurrence.”)

It’s our life. It consumes me/us. When something becomes so all consuming, it ceases to be a discrete datum of identity and becomes the whole of biography. I am not sure whether I am part of the brain tumor now or whether the brain tumor is a part of me, but it’s feeling more like the former. I think my book didn’t sell because it was a story about a brain tumor, but not a story about me. When writing a story about you, the you that is more a part of the brain tumor than the other way round, requires that you accept the diagnosis with all of you, and I’m not sure I’ve done that. Radical acceptance, or something. I can speak ad nauseum about the brain tumor experience, but never cohesively into one whole that is me with a brain tumor. Always two stories traveling along parallel tracks: One story about a man and one story about a brain tumor, and the confounding thing that I cannot manage to impart on you is whether these are separate stories or one. My identity is fragmented. I think this is what my brother meant several years ago when he cautioned me to write about myself as a character and leave myself in flesh and blood out of it. But I am also hard-nosed about this. I am the story about a brain tumor. I can’t get the story about me back out of it. The yeast is activated.

I want carte blanche to be a dying person, but I want to be taken seriously when I make plans for the future.

I want you to know that. Or, I wish you knew that. You expect me to be talking or writing about brain tumors. It’s on brand for me to do so. But I want you to know that with a fragmented identity, I can’t just lop off the part that I don’t like. Free will is the ability to choose to do otherwise, and I don’t feel free from this disease. I think I’m asking you to do the impossible–I’m asking myself to do the impossible: Have a brain tumor, but don’t let it define me. Don’t pity me, but know that I’m altered more each day. I want carte blanche to be a dying person, but I want to be taken seriously when I make plans for the future. It’s all about the brain tumor and has nothing to do with the brain tumor at all.

I don’t know how to write about brain tumors, but I don’t know how not to, either. I don’t know how to keep living like this, but I don’t feel free not to either.

3 responses to “I Don’t Know How to Write about Brain Tumors”

  1. Hello Adam,

    It’s not that you “Don’t know how to write about brain tumours”, may it be that you need to understand it in a different way? Yes you can talk about the tumour on so many levels, intellectualise it, pigeon hole it, philosophise, give it a name, rally yourself and others to try and find an answer and even, hopefully a cure, whatever makes you reconcile it with Adam and make it part of you, NOW!

    However, have you felt how crushing it is on your life? Have you felt and resolved the grief that comes about with the possibly imminent cessation of your life and what that means not only for your family, but for you.

    Yes, we the brain cancer community can live in functional denial, in fact we hope to be able to live in functional denial as we can get on with our lives, however long our lives may be. But to get to that point we need to, once again feel the grief, cry, pour out our heart. Then and only then does it become a part of our life, and shared experience.

    Don’t get me wrong Adam, it doesn’t make living with brain cancer any easier, only acceptable.

    Just a quick story.

    As the patient of a psychiatrist for many years, dealing with a major depressive disorder due to an abusive childhood I continually intellectualised and pigeon holed myself as this made sense to me for 8 years. However! This line of enquiry for 8 years did not help me make much progress in our sessions. I only started to make progress when I felt the pain of those childhood years deeply, with someone I trusted and traversed all those frightening feelings. With this, I made progress steadily. I can only thank my therapist for his perseverance, and my dogged determination to not let this depressive disorder beat me. (I think the saying here is “feel the fear, and do it anyway”)

    In the same way Adam, If we can make ourselves vulnerable with the emotions (anger, sadness, despair, depression, grief etc) face the fear that our tumours bring about, and express those to someone we trust, we can get to live in that little bit of peace we call, functional denial.

    I would love to see you return to your true self as a wonderful thinker and writer of philosophy, with the experience of cancer as it gives us a unique picture of what life or reality or existence really is.

    Your very close Adam! The paragraph that starts with. “It’s our life” is key!

    Your friend, brother in arms, in love and acceptance and a fellow BT survivor.


    Liked by 1 person

  2. I have no words, Adam, but somehow you pulled my non-words out of my heart/soul/ mind and wrote them. I read your words twice and then once again and am still confused. But without understanding, the wordless part of me does understand. Thank you, Adam.

    Liked by 1 person

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