For a while I was writing every day, exploring the inner most avenues of my heart as I navigated a path towards healing (whatever that means). It was something that kept me going, to write it down was to begin to deal with the ongoing ordeal of living with Herbert, or Flo, or really, any chronic or persistent pain. Then I fell out of it. I didn’t want to know how I was feeling, I certainly didn’t want to explain that to any one else. I didn’t want to invite prying questions from myself or from others. Most of all I was so tired of every trip on a sidewalk and hiccup or clumsy moment or misspeak being attributed to what people seemed to see as my condition. 

Example: I make a joke but I stumble over a word. My friends: “there’s that brain tumor again!”

I try not to take offense. I quietly try to muster a smile and let them know that while this chapter of my life has certainly changed me, the tumor had no cognitive effects. Yes I am fatigued, yes I lose my balance, but I can think and I can speak. But even if I couldn’t, it wouldn’t be for you to say. I remind myself this is people’s way of coping with what they do not understand. I note that if I really couldn’t speak they perhaps would not feel so comfortable poking fun. What’s interesting is it isn’t one or two people who gesture toward my life this way, it’s most people.

They see my life as a diagnosis, as a condition. My condition. They ask me what I will do when it’s over, when I am “healthy.” Hmmm, probably this, I think. I’m not some victim of circumstance, I had the privilege of options and I chose what I do. “It’s not a condition!” I want to scream, I want to tell everyone. My condition is being alive, so is yours! It’s full of pitfalls and challenges but joy and hope. I want to tell them to allow me to shed the constructs of what they know of disease, of life, of love. Don’t ask me what is failing asking me what is thriving! It is not your able body pitted against my disabled body. Don’t force me into a construct you understand. I will try not to do the same to you. I will try to see you in the same radiant and complicated intersections of all your identities. 

I can’t seem to muster the strength to say anything. I fear that my friendship will fatigue them. I fear people are tired of hearing that Flo won’t heal and so I am facing the very serious decision of a shunt versus craniotomy number 6. I fear being dismissed and forgotten as just that sick friend we had that one time. I fear that people will want to know too. I fear they won’t want to know where my heart is or what I need from them to enable my healing and my happiness, rather they want cold clinical details, the kind they can share at the next dinner party when they’ve run out of anecdotes of their own. I fear I’ve become the interesting passing detail of their day or the drama they thrive on.

“She named it…” They will say. ” Yea, she named the tumor…”

“She’s getting another surgery…. Yea… a shunt… Oh you don’t know what a shunt is?!” They will say acting as though they are narrating the plot of a medical drama. Their speech will stink of the phenomenon of a lot of people speaking a little bit about a lot of things they know just passing information about.

I know how it works because we all do it. I do it. Everyone does it. We unknowingly or perhaps unwittingly co-opt people’s narratives of pain and suffering in an attempt to understand and show empathy. We want to honor that testimony but we end up separating ourselves from them without cause or reason. It’s a way of coping and dealing. It helps us keep from crying. Then before we know it we become the categories people use to represent us because when who you are fades so far behind your representation you become invisible. We mean to show them honor but we flippantly cast them aside when things get busy and we must fall back to our routines. 

Then if you are the one with a struggle, You become your condition. “Do you remember so and so from way back when? They have such and such…” There stories are our conversation pieces. Even when your condition is simply being alive you get pigeon holed into what happened to you. I do it to myself, you do it to yourself, and we do it to each other. We put our lives in clean categories then we clamour to fit those categories. But here’s the thing, I don’t want to erase my struggles or misfit identities and blur us all into a world of false sameness, I just want to be honored for who I am where I stand, in all my complexity. I would assume you want that too. I don’t want to hear that my brain tumor is “the best excuse” ever, I don’t want to have an excuse for who I am and what I am capable of because of some definition of illness that gets written over my body. I don’t need an excuse because while there is so much ailing me, there is NOTHING wrong with me.

So what else is there to say? I certainly can’t say all that in every conversation. So I don’t, I laugh and I joke and I live in this world that erases our nuance and fits us into categories. And sometimes I enjoy it, but then I go home to the space where I am unapologetically complicated and vibrant and my condition is no condition at all, I am simply alive. 

Surgery is May 18th. Get your countdown clocks ready. And thanks for standing by me even when you couldn’t understand me.

I just don’t know what else to say.

Also I am just going to leave this video here:

Say what you need to say!
Peace and love,

Samira