Living Between Hope and Hopeless

I’m alive

for tonight 

for today

I’m alive and my feet hurt

I’m alive and my body burns, existing at 90 degree angles from itself

I’m alive and they dismantled the ADA

I’m alive and I don’t know what the future holds 

I’m alive but my insurance may partially cover gender confirmation surgery and hormones 

I’m alive and there’s no way to make that last line flow nicely 

so I’ll just say

I’m alive

Advertisements

Chronic Illness Feeling Number Whatever

On the verge of a really big bad, I can’t move and everything is on fire flare. 

not quite though…
instead i feel like freezing cold mud. 
My muscles burn as if after anaerobic excersize 

it is an empty, sputtering, cold, cold burn.
My muscles, so weak and slow
struggle mightily and weakly, an old overheated computer, slow 
-buffering- buffering- buffering-  
every cell in my body surrounded by cold sloughing muck, 
neurons firing through thick sludge. 
a difficult and slow journey. 
The mud drips and oozes 
my muscles are melting.  
i struggle to hold this form 
to not melt away 
and drift into nothingness like a half remembered memory

When We Aren’t Socially Acceptable Disabled People Anymore

Our American white colonizer culture loves a plucky underdog story. We swoon over stoic suffering. We adore an inspiring boot strap story about a person who overcomes great adversity to succeed in an emotionally satisfying mainstream way. 

But what happens when our suffering isn’t sexy and silent? When we aren’t productive “enough”? What happens when we aren’t getting better? When we struggle, flailing, desperate for some sort of support? What happens when we don’t know how to reach out or build the “right” sort of connection? 

I’m far from the first person to ask these questions. 

As disabled people we are given both more room to be imperfect, and listened to more intently, the more intersections of privilege we hold. That means that I get more room and grace from the abled people around me than my disabled peers who carry intersections of oppression I do not. It should be common knowledge that IBPOC, especially black non-men are given no room in our dominant white culture to be human, to struggle. This lack of acknowledgement doesn’t end or magically disappear with the disability community. We are not absolved of our racism or anti-blackness because of our, or their, proximity to disability.  This is something that we white disabled people should never forget or gloss over. 

How does this cultural expectation for graceful silent suffering impact me personally? It’s isolating. 

I don’t know who or how to talk to people anymore. I lack a conversational template for reaching out to casual friends. When my social role seems to be support person or advice giver as far as I can tell most of the time? When everyone misgenders me as older woman, team mom if you will, and we all know what moms are for. How to talk to people when all I have is sadness and negative self image to talk about? who wants that? who can I subject to the pain of standing next to me while I drag them down. 

Even knowing that isn’t an accurate assessment of the situation, how to undo a lifetime of being told that my expression of feelings or discomfort were an undue burden on the people around me, exhausting, vampiric, a sign of my inherent weakness? 

I don’t really have an answer. I know I am struggling. I know I have said all this before. I know it is difficult for me to let my guard down and let people in, that it is equally hard for me to feel worthy of or safe with letting others see or carry any of my pain. I know that it is my normal to feel like this in the winter when I’m so sick and not even able to go out for errands, as my already small life shrinks further. 

But I also know that if I can’t do it for myself, my children, nesting partner, and beloved connections do not deserve to be solely taxed by my emotional luggage when I’m unable to carry it on my own anymore. 

That means learning to feel more safe with vulnerability, I think…or something like that. It means…It means continuing to dismantle the internalized ableism in my head that tells me that I am not worthy of life or love if I am not able to be productive. It means pushing myself to keep struggling at growing and being even when I want to curl up in a ball forever. 

It means I deserve to live. 

It means you do too. 

Reframed

I used to think my sick body was a weak body

for the way it shook, burned, throbbed, and trembled

how I cursed it’s every inconsistency

how I sobbed and railed and wailed 

at my body’s failure to do as I saw fit and proper

/\/\/\/\/\/\/\/\/\

yet here I am years later 

thriving despite

inspite 

because of

/\/\/\/\/\/\/\/\/\/\/\/\/\

and so a dawning of sorts

a realization 

my sick body is a strong body

a persistent body 

an empowered body 

my body screams to live 

trembles in its effort to continue 

burns to live a day in love 

my body shakes with will to live

we shall not stop

not today

not tomorrow 

for this body is a strong body

Happy Queer Holidays

A History –

Christmas morning 1984: I snuck into the living room in the middle of the night. The lights from the tree seemed like a gentle hug as I surveyed the presents clustered around it. Teddy Bears and bikes twinkled merrily under the lights. No pink I noticed, and breathe an internal sigh of relief. Hopefully I would only get one or two unwanted Barbies that year. 

Christmas morning 1990: My face fell immediately upon opening the present in my lap. Underneath the delicate tissue paper and shiney silver wrapping paper is a universe of pink and teal discomfort. There was  Teen Spirit deodorant, hair gel, hair spray, lip gloss, and other small pieces of feminine coded frippary. I looked up in bafflement at my dad. My step mother smiled a tight lipped smile at me whispering “We thought you might be better at…if you had more tools” as she gestured vaguely at her body. Shame and confusion writhed over me as I peeked at the comfortable and beloved Who Framed Roger Rabbit sweatshirt I was wearing. What was wrong with me anyway? 

Christmas morning 2005: My semi estranged husband had created a beautiful winter wonderland with every day items laying around the house. We both awkwardly hyper focused on our babies and their magical experience of Christmas. I was sad but also relieved that no one was trying to force glittery baubles and pretty blouses on me or reflecting tearfully on what a lovely wife/daughter/sister I was. New words were darting in and out of my awareness nervously: transgender, genderqueer. I wasn’t sure how  yet but I knew my entire universe was shifting.  

Christmas morning 2007: My girlfriend and I cuddled on the couch while our children opened presents. She gave me gifts that didn’t leave me feeling ashamed and confused. I felt like I might actually really exist for the first time in my thirty some odd years of life. 

Christmas morning 2010: I was a single parent, certain that I was not compatible with humanity in any meaningful way. “not fit for human consumption” I joked. But I knew myself and I was happy with the person I was becoming. I was confident and content for the first time in my life. Though I believed I was beyond love, I had language to define my reality more clearly. It was a blessing I never expected.  I watched my sons open presents joyfully. life was good. 

.
Christmas morning 2015: such a full and surprisingly wonderful morning. Beyond all expectations I had met a lover and friend who really sees and embraces all of me. Together we have been able to build a fundamentally healthy and nourishing relationship dynamic. My chronic illness had relatively recently forced me to quit working outside our home. There were many challenges ahead of us. It will be hard, but that day we watched our four oldest children open presents as they laughed and fussed over the new baby. Life was great. 

Christmas morning 2017, A prediction: The last two years have been hard, the last year has been the hardest. My nesting partner and I are worn down in a lot of ways. Our meager social network and resources have been stripped further down outside of a deeply appreciated online community that we have deep love and gratitude for. I have in my partners and online community, people who really see and wholeheartedly want every part of me, for the first time in my life. Something strong and fragile, uncoils in my chest. Perhaps I am fit for human consumption after all. The presents are small and few but the love is very real. My nesting partner is hopefully preparing to visit our/his oldest daughter in Texas. Our holiday, whether celebrated on the solstice or X-mas is an honoring of us all as individuals and a family. Life flows on. 

 Life is magic. Life is hard. Life is my Blessing. 

Happy holidays for all my beautiful, sad, joyous, struggling, celebrating humans!


<< This post is part of the Renaissance holiday blog roll! Find out what it’s all about here.>>

A handy list of everyone’s dates is posted in there, make sure to check
it out!


It’s my Birthday

And other random bits and bobs 

Today I turn forty. For the length of my thirties I always expected to some day develop some anxiety about aging but so far that hasn’t happened. I find myself happier with and in myself every year, though my body becomes exponentially weaker and more tired every day, though illness and otherness are perpetually isolating it seems.

In a surprising twist for me this year I had some good luck and will be able to take advantage of a scholarship for an online Doula class via DTI. They have scholarships available for both trans and IBPOC birthworkers. I have been passionate about people having the best possible birth outcome and post partum period for near 15 years. Now, thankfully I get to learn how to support that passion professionally, hopefully helping many marginalized and at risk families and helping my own family thrive. So many things could go wrong but for now I am going to go ahead and feel some hope that between my writing, my commissioned knitting, and Doula services that perhaps my family and others may thrive. 

That’s the dream right? 

But for now we are broke and I feel mildly bummed out that no one really seems to care that it’s my birthday (even though I know I am an adult and adults just don’t get fussed over on their birthday). This is something I seem to go through every year, even though I know it is silly and probably pointless. 

I’m taking the weekend off for my birthday. Monday I will have things to knit and things to write. Life will go on just fine, maybe even a little better maybe. 

That is definitely the dream. 🙂 

A Universe in Their Eyes

Star child

You were fire once

Dust child

You wore infinity so well

Fingertips ablaze and heart blood weeping

The embers of all your resolutions burn through clammy palms

Perhaps they will spell fortitude in cold ash on your coffin

Will you allow yourself then, to remember how to live?

Or will you remain forever whispering into the dark? 

Unforgiving and unforgiven

Despair and loneliness knit into your bones

Hovering like concerned mothers right behind your eyes

 .

.

.

…my eyes

.
Burning

Exalted

Empty

Reborn or something like it

I will stitch my dignity into a shape I can wear

An eternity in the span of a breath 

An unqualified absolution

An uncertain victory to be sure