Tuesday, February 4, 2014

Trouble me

Is it true that I'll have my very last chemo in two days? I am trying to diminish the numbness of one toe by showing my feet and toes as very tiny and insignificant in this photo. Is it working?

Doctors ok chemo five minutes before it starts, so I'll know then.

My body tells me it is so. It tells me this with a restless brain that shivers inside its cracked skull. It tells me this with a sickening stomach that suddenly doesn't want to function. It tells me this with a large lump in my throat that doesn't want to swallow it. It tells me this with a physical feeling of dread lead in my veins, lead in my heart, lead on my tongue coating it so that the taste of oranges or cheese or coffee or peanut butter or apples is leaden and coated with slimy mercury that rolls oily around and sticks in my teeth. My body is mounting a revolt, even the thought of the upcoming date with poison, which is just there right under the surface, ills me.

I think yes I'll have chemo #6 (PLEASE LET IT BE THE LAST IN THIS LIFE) on Thursday.
 
"Life is a whim of several billion cells to be you for a while."  ~Author Unknown
 
And some to run amuck.
 
People wonder if it is offensive to talk to me about others they know who have cancer, or have died from it, or are going through really rotten stuff. Yes it is ok. Will I be offended? Never. Why/how?

A roundabout illustration follows:

We, as a people, love to be offended. Why? Maybe a target at which to direct horrible fear helps. Example: I am restricting my use of the word retarded. It causes outrage among lots of people that take offense at it. And yet…I confess, I sense a tiny bit of delight in those who are very outraged by this word. Or another word or words. Or are outraged at horrible things that have happened to them by bad people or drunk people or evil people or horrible luck. I have thought about this a lot. I wonder if being outraged is kind of fun and kind of useful. (Yes of course I have raged myself). As a way to think about something. Like maybe something other than whatever is right in front of you or what is your real problem. And I think that the outrage, the offense, is something that you take (it is not given to you) – you pull it out of the other person, or the word, or the idea, and you pull it out and bring it to yourself to drool over, and to eat, to caress, to ram bloody into your mouth to eat and consume and then eyes blazing with your precious fury you are fueled with that bloody raw meat of outrage and you can then turn and spew it all over those who have outraged you, you can scream viciously into their faces, you can spit the raw stinking outrage right back on them, onto their faces, in the firelight. And you are joined by a mob of people who are cheering you on, because you are right, you are righteous in your anger and hatred. You have a license to kill almost. You have a loophole in the social contract, for a minute you don’t have to be nice or kind or polite or normal – for that minute that you hold the outrage you get to rant and rail, to yell and call names, to denounce, to call another, even a person who you have never met or heard of, you get to call that person a wrong person. A monster.

But I don’t think this works. I think that you took that outrage, you took that offense, because you wanted it. You wanted it because taking that busies you, occupies you, secretly thrills you because it takes you away. Away from maybe the real thing that freaks you out, the real awful thing that hurts you. A terminal illness, a horrifically unfair life, terribly difficult child, a horrid spouse, the fact that you don’t have the love that you want, a loss, a pain, a missing. And you don’t have to take that offense, you can say no thank you I have had enough. I believe that offense is taken, not given. Old fashioned phrases back me on this: "Please don’t take offense." Take. But anyway I never really had to come up with this argument, it was just there for me to observe. I don’t know why I think this way.

Let me tell you a story. This is how I feel and maybe it will make sense to you. My brother Max was run over walking in the road and killed by a car driven by a drunk driver when he was 18. I was 19, only 16 months older than him, and I was in college, in 1981. A long time ago. A long time ago, but. But I think about this all the time. Every day, every hour, every minute and second of every day and the night, underneath the life I live of conversation and actions, runs a stream of Max. It is there like a river. I dream of a river running under the house, under the street, under the fields. The event happened and it is with me. But this event of the driver that hit Max, another boy driving a car, the young precious boy, only 17, driving I imagine gleefully, with beer in his veins and maybe Foreigner on the radio, or Van Halen, this event is not made of outrage. Not any. The event of Max’s death is made of sadness. Mixed with pain, and beauty, and memory. Of music and laughing and mountains and comic books. Conan and Superman, first issues, big thundering pow pow blam blam fists punching on the page in dots. This even is made of love and sadness and sadness and sadness, carved out of pain and gut wrenching sadness, like a sculpture, gleaming and huge that I see and feel with awe and fire. But no outrage. I have no anger or outrage or fury or discomfort with drunk drivers, with the boy who was driving that night.
 
At the moment of impact, even before we heard about what had happened all of the outrage instantly vanished, it popped out of existence. My parents, my sister Annabelle only 14, and I never felt it. Not an iota. We had no room if we had wanted to, we were too full of love, in the form of agonizing open heart surgery with no anesthetic, in the form of the shock of being dropped into a well from a thousand feet, in the form of having a vacuum cleaner hose like on a cartoon put up to your mouth  and the air sucked out of your lungs. But we did not think “we are too upset to be angry” or any thing like that thing. We just never, not ever, not once, not for a second, not for a what if, not for pretend or real, we were never outraged or mad at anyone. The car that hit Max, the boy that drove it, the killing crushing impact that flung Max and flung and crushed the life out of him, that took him from life to the stars, probably in the air on the way from one piece of asphalt to a dry and unforgiving strip of Texas weedy field – those moving parts and that person that was behind the wheel – they have nothing to do with Max. The moment it happened, they became removed, revealing in the light the loss.

R. B. (I will leave out his full name in case he wants it that way) was driving that car. He was 17. He was in my automobile mechanics class at Georgetown High School in 1979. He was just a tall skinny auto mechanicy guy who was in the background of my life. We moved to Georgetown from Boulder Colorado my senior year and I hated it. I am not mad at him. I was not ever mad at him. My mother was never upset at R. My father Ray was never outraged by him or by his being drunk or not, or by any person driving any car drunk. We do not represent mothers or people against drunk driving. In fact we forgot him instantly. We never noticed R. B. Now I regret that and I find he has entered the stream of my consciousness. He is in my mind all the time too. I wonder about him and I worry about him and I am so very sorry that this awful event happened to him and I forgive him, and people who drive while drunk or not have nothing to do with him and me.


Leila is my friend who helps me with writing. She is a writer and read over some of this before I put it up today. She is wise and she says "To remember Max with someone- that brings him to the present? Judaism says our immortality lies within the memories of people who knew us and who will talk about us. So you are welcoming-- inviting stories. They are what connect us."
 
I agree.

So how does this relate to me and cancer and stuff now?
 
Like this:
 
Brother

1. I'm deeply hurt by the loss of my only brother - all the time - will never go away

2. I deeply empathize with another person's loss when they tell me about it

3. Their loss and my new sadness or feeling about it doesn't make my pain about my brother any worse - or better - it's different

4. So if you know of my trauma or loss, don't be afraid to tell me about yours 
 
Cancer

1. I'm deeply affected by the fear of cancer and the terrible sickness that I feel when I take chemotherapy into my body. It has hurts me mentally and physically and continues to do so. It has robbed me of time and comfort and teaching and taken me away from things I love. It has upset my whole family and my friends. It's awful. It freaks me out and scares me and hurts me all the time and is always on my mind, under the surface. I hate it.

2. I deeply empathize with any other person's experiences of suffering from cancer or from any difficult thing. I care.

3. Their/your experience and grief, if I hear about it, will make me sad and upset. Like if a friend tells me about their illness or that of someone they know. My new sadness or feeling about it doesn't make my hurt about my cancer any worse - or better - it's different. It won't scare me or make me more sick.

4. So if you know of my trauma or loss, don't be afraid to tell me about yours.
 
Does this make sense?
 
 
From "Trouble Me" - by Natalie Merchant
 
Trouble me 
disturb me with all your cares and you worries
Trouble me
on the days when
you feel spent
Why let your shoulders bend underneath this burden
when
my back is sturdy and strong?
trouble me
 Speak to me
why are you building this thick brick wall to defend me
when your silence is my greatest fear?
Why let your shoulders bend underneath this burden
when my back is sturdy and strong?
speak to me.
 
Let me
have a look inside these eyes while I'm learning
please don't hide them just because of tears
 

 
 

 

 

 

 

 


 



8 comments:

  1. You listen to all my trauma and loss all the time. We share each others sickness, sadness, and loss, and the hole in our hearts and my being of emptiness. I ask how you are and you ask how I am, and we listen.

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  2. Wow Amy, thats a lot to think about. Thanks for putting your feelings out there. Happy Goodbye to Chemo!

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  3. Our connections make our journey through life possible. Your writing about your suffering (which actually means to bear, to hold up) of the chemo has been a gift to me, expanding my understanding, my capacity to empathize. The truths of our existences seem to come in paradoxes: that your struggles help me with mine. And I hope mine help you.

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  4. Very Wise Amy, this is an important amount of truth. I'll be thinking of you tomorrow and hoping you get this last treatment started so you can be finished with it. Let the healing begin.

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  5. Your blog post reminded me of this
    When you are hurting, there will always be people who find a way to make it about themselves. If you break your wrist, they’ll complain about a sprained ankle. If you are sad, they’re sadder. If you’re asking for help, they’ll demand more attention.

    Here is a fact: I was in a hospital and sobbing into my palms when a woman approached me and asked why I was making so much noise and I managed to stutter that my best friend shot himself in the head and now he was 100% certified dead and she made this little grunt and had the nerve to tell me, “Well now you made me sad.”

    When you get angry, there are going to be people who ask you to shut up and sit down, and they’re not going to do it nicely. Theirs are the faces that turn bright red before you have a chance to finish your sentence. They won’t ask you to explain yourself. They’ll be mad that you’re mad and that will be their whole reason alone.

    Here is a fact: I was in an alleyway a few weeks ago, stroking my friend’s back as she vomited fourteen tequila shots. “I hate men,” she wheezed as her sides heaved, “I hate all of them.”

    I braided her hair so it wouldn’t get caught in the mess. I didn’t correct her and reply that she does in fact love her father and her little brother too, that there are strangers she has yet to meet that will be better for her than any of her shitty ex-boyfriends, that half of our group of friends identifies as male - I could hear each of her bruises in those words and I didn’t ask her to soften the blow when she was trying to buff them out of her skin. She doesn’t hate all men. She never did.

    She had the misfortune to be overheard by a drunk guy in an ill-fitting suit, a boy trying to look like a man and leering down my dress as he stormed towards us. “Fuck you, lady,” he said, “Fuck you. Not all men are evil, you know.”

    “Thanks,” I told him dryly, pulling on her hand, trying to get her inside again, “See you.”

    He followed us. Wouldn’t stop shouting. How dare she get mad. How dare she was hurting. “It’s hard for me too!” he yowled after us. “With fuckers like you, how’s a guy supposed to live?”

    Here’s a fact: my father is Cuban and my genes repeat his. Once one of my teachers looked at my heritage and said, “Your skin doesn’t look dirty enough to be a Mexican.”

    When my cheeks grew pink and my tongue dried up, someone else in the classroom stood up. “You can’t say that,” he said, “That’s fucking racist. We could report you for that.”

    Our teacher turned vicious. “You wanna fail this class? Go ahead. Report me. I was joking. It’s my word against yours. I hate kids like you. You think you’ve got all the power - you don’t. I do.”

    Later that kid and I became close friends and we skipped class to do anything else and the two of us were lying on our backs staring up at the sky and as we talked about that moment, he sighed, “I hate white people.” His girlfriend is white and so is his mom. I reached out until my fingers were resting in the warmth of his palm.

    He spoke up each time our teacher said something shitty. He failed the class. I stayed silent. I got the A but I wish that I didn’t.

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  6. Here is a fact: I think gender is a social construct and people that want to tell others what defines it just haven’t done their homework. I personally happen to have the luck of the draw and am the same gender as my sex, which basically just means society leaves me alone about this one particular thing.

    Until I met Alex, who said he hated cis people. My throat closed up. I’m not good at confrontation. I avoided him because I didn’t want to bother him.

    One day I was going on a walk and I found him behind our school, bleeding out of the side of his mouth. The only thing I really know is how to patch people up. He winced when the antibacterial cream went across his new wounds. “I hate cis people,” he said weakly.

    I looked at him and pushed his hair back from his head. “I understand why you do.”

    Here is a fact: anger is a secondary emotion. Anger is how people stop themselves from hurting. Anger is how people stop themselves by empathizing.

    It is easy for the drunken man to be mad at my friend. If he says “Hey, fuck you, lady,” he doesn’t have to worry about what’s so wrong about men.

    It’s easy for my teacher to fail the kids who speak up. If we’re just smart-ass students, it’s not his fault we fuck up.

    It’s easy for me to hate Alex for labeling me as dangerous when I’ve never hurt someone a day in my life. But I’m safe in my skin and his life is at risk just by going to the bathroom. I understand why he says things like that. I finally do.

    There’s a difference between the spread of hatred and the frustration of people who are hurting. The thing is, when you are broken, there will always be someone who says “I’m worse, stop talking.” There will always be people who are mad you’re trying to steal the attention. There will always be people who get mad at the same time as you do - they hate being challenged. It changes the rules.

    I say I hate all Mondays but my sister was born on one and she’s the greatest joy I have ever known. I say I hate brown but it’s really just the word and how it turns your mouth down - the colour is my hair and my eyes and my favorite sweater. I say I hate pineapple but I still try it again every Easter, just to see if it stings less this year. It’s okay to be sad when you hear someone generalize a group you’re in. But instead of assuming they’re evil and filled with hatred, maybe ask them why they think that way - who knows, you might just end up with a new and kind friend.

    by telling the oppressed that their anger is unjustified, you allow the oppression to continue. i know it’s hard to stay calm. i know it’s scary. but you’re coming from the safe place and they aren’t. just please … try to be more understanding. /// r.i.d (via inkskinned)

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