in my own anger, quarreling with God

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today i went to church. i have been so excited about this new experience of faith that i explode in conversations with friends about it. most of my friends aren’t christian, but very supportive of this thing that gives me peace; to the point that when i lost my sunday morning attendant, my sweetie volunteered to take me to church, a great act of service considering the level of violence she’s experienced under the banner of religion.

i never took her up on her offers to take me though. i didn’t have words for why i stopped pursuing after a relationship with God. one week of being on my own became two, two weeks became ten. the words i read just stopped meaning something to me. the idea of prayer seemed ludicrous.  songs that had given me joy before annoyed me.

out of respect to what this relationship meant to me over the last year, i decided to give things another try today. the pastor spoke about having what he calls an “unoffendable heart”. i didn’t know what he meant by that, but became moved by his message. my notes:

Some of us are giving God the silent treatment. So mad we can’t pray, so mad we don’t want to worship…Discouragement and disillusionment makes it impossible to see the supernatural, offense in our heart makes it hard to see love… Offense is often a passive anger. We don’t notice it because we pay attention to active anger…The question is not whether your prayers get answered quickly, it’s whether we allow ourselves to be offended if they are not. The key to not being offended by God is just accepting that understanding about why an  injustice took place may not happen and making a decision not to be bound by the expectation of understanding.

in a second, everything unspoken in me got said. i am so mad. getting choked up and leaving a room because i’m frustrated is recently a common occurrence. i never say i’m mad at God, but today that rang true. i am mad with God. some of my list of grievances:

I’m mad at how limited I feel with this body. So many things I can’t do.  God made me like this?

Mad that I have to put so much labor in managing my disability and that it’ll be this much work, if not more, every day until I die.

Mad at how scared I am that someone will physically hurt me and that there will be nothing I can do about it. Mad at how vulnerable I am to other people’s whims.

Mad that I’m 25 years old and think of my lifespan as some twisted Benjamin Button movie, like I am aging at a different rate than my peers. Mad that I have to think of my lifespan as twenty five more years, hopefully fifteen of them “good ones”.

Mad that I accepted God to be in my life and dang, I still just feel so, so alone.

i don’t know what to do with my anger. i want to punch something; i want to plant my fist against a wall so hard it breaks, just like i saw my brother do once when we were younger. i want to rip something open and hear the sound the tear makes, whether it’s a shirt, a dirty rag, a plastic bag, anything.

but i can’t. besides the fact that i can’t physically do those things (i’m mad about that, too), this is my life. i can go up to the alter after the service and cry because i’m so angry at God and don’t know what to do. i can keep my sunglasses on while i hang out with friends after church, go home and cry some more. tomorrow, i can go to work and pour all my energy into doing the best job i can. and, later in the week, when someone I am working with tells me that they don’t know how they will live now that they’re disabled, i can be the baby face that reminds the person, you just gotta, it’s not easy, but you aren’t alone in it, and you told me once you believe there is a purpose for your life, well, i believe that too for you. you’ll be OK. this your life. your freedom. if you want it, you have to fight for it. those moments will dislodge some of the bitterness and like always, i will remember i was positioned exactly for this work and think: “look at God using you, aren’t you blessed?”

i will probably still be angry a lot of the time, but life will continue.

i pray to one day, as PB says, not be so offended. i pray to see grace.

even in my anger, i am refusing to believe that God has forsaken me.

 

snare

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a new poem:

the text:

i have lived this life licking
the caps of knuckles, watching
from corners perched,
ready to swoop into hiding

i have lived this life begging myself to
become less a monster, less a creature to cry for.

when i did not change, when nothing about me
grew more agreeable,
i cried for myself – sulking.
mourning this body,
this life.

but here i am
listening to you talk of
crushes and dreams,
classes and parents, and
i am wondering how i could witness
this goodness, and
call us beast;
how i could know you and
know me, and
still subscribe to this doctrine of
our monstrosity.

link to video: http://vimeo.com/33386031

where i’m at..

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since early march, i have told friends that i have not “bounced back” yet. by “bounced back” i mean that this was not the first time i was in a relationship with someone who told me later on that they did not find my physical embodiment attractive. this is not my first time with someone who tried to make the attraction piece “work” because they appreciated my mind and spirit inside of this body, or the connection we had. in fact, this has been my whole life — a string of experiences where i am the friend people are secretly very emotionally intimate with, but the one who is not invited to parties, the friend the person is conflicted about loving, the date who knows the parents well, but not the person’s other friends. it has been an endless struggle to prove and remember worth in a culture that is relentless in its telling of the wrongness of our bodies. i have enough experience now that if i had known this is where she was, i would not have dated her. it’s fine not to like me or not want to date me, but an uncertainty of my body is non-negotiable.

my sadness is not so much loss for her — we barely knew each other. my heaviness is in being triggered to this place of undesirability. in this rampant culture of ableism, wanting myself is something i have fought for. coming back to this place has been very hard. feeling undesirable and angry at my body/reality was unexpected. i was loving my defiant, resilient body with such an intensity. it hasn’t just been being triggered by her that has been hard. i am starting to realize how hard it is to manage all the things a complex body like mine needs. i am learning to love a body that needs so much from me.

i still feel foolish. foolish for opening myself up like that, foolish for believing disabled girl her would know how to love disabled girl me. foolsih for thinking that intimacy was finding another young, queer, wheelchair using, asian girl with a white daddy, political person.

collecting myself has taken:
poetry
spending time with people with kin bodies, who love themselves
writing out on my iphone at 2 am all the ways i have survived (and wanted to stay alive)
saying no to friendships that i am not emotionally ready for
distance
distractions
love & being held in bed while antony and the johnsons play
talking to a therapist at a queer mental health center
affirmation from my community via snail-mail
coming to grips that this body and all the work it takes to live in it is always going to be my reality
learning how to have respect for my body even when i resent it
energy, so. much. energy.

some days i start to feel like the self i once knew, but so many things bring me back to this place. seeing a disability or queer analysis that has no recognition of what it means to live in a non-normative body is a trigger. seeing people i am in community with having non-wheelchair accessible event is a trigger. on a bad day, having a fight at home, a friend forgetting something important to me, or my sister not calling me back all take me to that place. i know it’s my own stuff. i know how i feel about myself has to come from inside.

and i can’t blame her for not loving me. it has always been my lone work.

video: a midnight prayer

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i made this video last night to use in a skype poetry reading for a youth conference in ottawa this week. i have a lot of shame around using a ventilator and having a trach.. i’ve been trying to do little things to really face that stuff within myself. (e.g. posting profile pics that have my whole body and not just a tiny piece of my face, telling friends about my access needs around my breathing early in the friendship, writing poems about the reality of my body instead of a fantasy body, etc.) coming to terms with my trach and finding beauty in my breathing feels central to learning to love my body as much as it loves me.

here’s to the beauty in our loud genius bodies.

–
skillshare: i made this using my iphone.. i recorded my voice with voicememo and used the video camera on the phone to record myself and the ventilator. i pasted the clips together, stripped the audio off the video clips, added the audio off the voicememo, turned the contrast up, and added captions with iMovie, a free program on mac computers. (i did all of this in bed, literally at midnight, by typing with one hand.)