The Whole Damn Thing

I’ve been in a foul mood.

I’ll admit that. Until now I’ve been unwilling to admit why. I act like it’s because I am an unwitting victim of a brain tumor and that the universe is out to get me. I don’t really believe that, and that’s not really why, and I really figured that out today. For some time I have known that I have forsaken myself for others. It’s the reason my sister, who selflessly flew red eyes to come visit me, tells me that song from that one cell phone commercial is about me. You know, that song about saying what you want to say. And the thing is, I want to say what I want to say, and in so many spaces in my life I do, but in the emotional, messy, familial, relational spaces where my flawed thinking and stunted communication has led me to this place, I struggle still to articulate what I need, what I want. Part of the reason I can’t articulate it, is because I can’t figure it out. When you spend long enough silencing yourself in favor of others, you stop listening to that little voice in you that screams to be heard. Over time those screams start to feel like whispers and even though they are there, you learn to look past them, your coping strategies transform into habits and you forget slowly who you are and who you want to be.

I know certain things about myself, I am smart, I am driven, I am progressive, I am a feminist, I am a powerful thinker, I am passionate. I want to write, I want to help people, I meet expectations at my job. I know those things. I know I want to feel free, I know I like wind in my hair, I know I have a brain tumor, I know I am okay with that. I know that I love life, being outside, my family, my family of choice. I know those things. I just don’t know how to navigate some things. I know that I have not prioritized my needs, my feelings, my heart for so long. I know fear governs me, and not in the way memes talk about,

Yea ok, but easier said than done...

Yea ok, but easier said than done…

where fear drives you forward, but in the way that it stops you in your tracks. Again, not in all things, in some things fear drives me forward, but in some ways, my rigidity, my insistence to be an oak tree, tall and strong in the wind causes me to lose myself, to see withstanding fear as the goal, as opposed to overcoming it. I don’t want to withstand it, I want to move with it, flow with it, let myself be like the tall grass in the wind, moving and learning and overcoming. Being rigid served me, it got me this far, but I can’t thrive more than I have in this rigidity. Jim Carrey once referred to the people who draw us away from our own shining light, he mentioned the Hollow One, “who clings to your leg and begs, ‘Please don’t leave me behind for I have abandoned myself.’” I had allowed others to cause me to be the Hollow One for myself, and for others. I couldn’t confront my needs or wants, so I begged others to stay in the dirt with me, writhing around until the dirt turns to mud and we slowly get stuck, so deep in the mud we can’t see where we came from and where we are going. I let fear of loss, fear of change, fear of failing govern what I do, what I think and where I go. And when I do this I conceal myself from the people I love most. I am often more myself with total strangers, co-workers, colleagues, acquantances than with the people who spend each day seeking to understand me. Again turning to Jim Carrey, he tells us “Even those who are closest to you and most in love with you; the people you love most in the world can find clarity confronting at times.” I can find clarity confronting at times. And if they see me clearly, will they still like what they see?

I dropped that guard a bit today.

I was so upset about who would be in the waiting room and who wouldn’t and what would they think and how would they feel and how could they survive and will they be sad and will they be angry and what they need and who they are and this and that and everything. I was upset about everything. Everything except my tumor. I was upset about what life should have ended up like. I was upset about a wedding that should’ve happen (or shouldn’t have, I really don’t know), I was upset about not being nice enough, or not being sad enough, or not being excited enough, or not considerate enough, or was I too considerate? Was I too nice? Was I a pushover? I was so busy ripping every word, thought, movement and action apart. I was upset about everything and everyone, and worse of all what everyone might think or feel or be at any moment. I couldn’t manage it. I was angry and upset. The tumor was my excuse to cry all day and not have to explain myself and face myself, but it was not the cause (ok it was a little but not that much). And then, Herbert, with his fat ass, rampant weight loss, and just general bad attitude and temperament, brought me back to my journey. My journey of finding out who I am, where I belong and what my role is in this world. A journey I avoided in favor of clinging to the ideas I thought I had about myself.

I am getting surgery on Thursday, I’ve known that it is coming for almost 6 months. I know that they will drill my skull open. I know the stagnant hospital air will touch my brain. I know my hearing may be worse. I know that my face may go numb. I know that I might feel dizzy. I know that it is going to hurt. I know there will be moments where I lose my resolve. I know there will be moments where my sense of humor carries me through. I know there will be moments where it isn’t enough. I know I will need my family. I know I will rely on them. I know I might get annoyed with them. I know my friends will be there for me. I know my family of choice will be as well. These things I know. I expected those things. I expected that part of Herbert would be gone. I expected it all. With all these expectations I was okay. Then, while I was sitting on a cold leather exam room bed, being overly snooty and emotional, the doctor came in and changed everything.

Him: “So, do you have any questions or concerns?”

Me: “Um, well, der, um, I’m pretty worried about my face, it’s been more numb than it had been and I am worried it won’t work after.”

Him: “You’re right to be worried about your face.”

What?! I didn’t expect this. This local hero, this expert in his field, he was supposed to assuage my overly critical analysis of the potential catastrophe that awaits me.

Me: “What?”

Him: “You’ll probably have some facial droop, you’ll have substantial pain, and it will take time for you to recover from this one.”

Me: “Wait what? You’re just going to trim the tumor down right? Partial resection? You’re not going to take the whole thing out, right?”

Him: “Because of the substantial growth, I think we need to be more aggressive, I’m going to try and take the whole thing out.”

Me: “uhhhhh…..”

The whole damn thing.

He’s taking the whole thing out.


Did I say WHAT yet? Because, WHAT.

I know that I have been posting pics on social media with the hashtag #operationexterminateherbert, but I didn’t know that this would be the final mission in that operation. I suppose it should be heartening, this ordeal might end, and for all intents and purposes that can be really great. But, it may also mean a longer, riskier surgery, more side effects, more possibility for negative outcomes. And Herbert, even before I knew what and who he was to me, he was with me. How do you let go of a part of yourself, even if it is a part of yourself you feel pure scorn for? Will I still be a brain tumor warrior when he’s gone? Will I be a survivor? Will he cease to be a part of my narrative? Will I still fear him? Will I lose my connection to the #btsm community? Will I be alone? Will I have to pave my way without the protective excuse of a brain tumor?

He wants to take the whole damn thing out. I was suddenly very protective of Herbert. Of myself. Of my body. Of my story. What will happen when we’re more “aggresive?” What will I be when this thing that has played a central role is so much of my life just disappears. Will he ever disappear? And if he does, will I go with him? Who will I be, if/when this isn’t a part of me? Who am I now?

Who will I be?

Will I still inspire? Will I still matter without Herbert?

It all came crashing down around me today. The fronts I put up. My solid oak tree facade in the wind. Fighting hard not to let change and fear drive me forward. Trying to dig my heels in even when my whole body wants to let go.

And suddenly, I felt free.

I looked at my family and told them I’d like someone special in the waiting room.

I stopped frowning.

I decided to laugh.

Not because it is funny. It is wholly unfunny. A full tumor resection is not funny. A more aggressive treatment is not funny. Blood draws, MRIs, pre-op testing, all NOT funny.

But I decided to laugh anyway.

I’d been holding on to these perceptions, these masks. I’d been begging all around me, please don’t forsake me as I have forsaken myself. And I realized, with or without Herbert, I have to remake myself after surgery. I have to heal. I have to rebuild. The buildings we build from the rubble and wreckage of disaster rarely look the same as what they were built on, even if they bear a striking resemblance to that which they grew out of. I will still be me, but maybe, if I have to face myself, learn who I am, let my spirit rise above my humanity, I may finally be able to say what I want to say. Maybe I will finally be able to show my fullest truest, flawed but GORGEOUS self to those I love most, and all those I encounter. Maybe I’ll even be able to say what I want to say to myself. Maybe I can be tall grass in the wind, flowing with life, conquering all, while learning and changing all the while.

As Eleanor Roosevelt says, “You gain strength, courage and confidence by every experience in which you really stop to look fear in the face. You are able to say to yourself, ‘I have lived through this horror. I can take the next thing that comes along.’ You must do the thing you think you cannot do.”

So I am confused, I am scared, I am overwhelmed, I am anxious but I am hopeful. And I am still, at least for now, Living with Herbert.

T-minus 1 day until I reemerge from the cocoon, as a beautiful butterfly. Or at very least, a moth.

Peace and Love –



2 thoughts on “The Whole Damn Thing

  1. AHHHHH! Go for it! Facial droop and all!

    Actually, I think it was cool that your doctor was honest.

    But still… AHHHHH! Go for it. This is your moment to do the scariest thing ever. And then you will come out alive and get to wear a t-shirt that says, “I had brain surgery and all I got was this shitty T-shirt.”

  2. To dear, lovable, funny and awesome Samira: I am with you all the way! Beautiful writing:) Courage, BABY! You have it in spades! I send you Love and Hope, today, tomorrow and always! Hugs and Love, Kit

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