Friday Morning Reflections

It’s 8:56 am. My children are all gathered watching the new season of Magic School Bus. The teenagers orbit around the edge of the room pretending they are less invested than they are. The sun streams warmly in the window…for now it isn’t giving me a headache. My pain levels are tolerable, what ever that means. Milton will be home soon. My social network ebbs and flows, as they do. For now I do not feel like a burden. It’s peaceful. 

Yesterday we got several pieces of bad news, two of which could have long term negative impacts on our lives. My pain is better right now but my asthma is much worse. I had every intention of writing a lot for autistic acceptance month but autistic burn out has left me struggling to frame thoughts in words at all, much less once or twice a week. I stayed up late last night worrying. My nesting partner is worried as well, depressed and frustrated. We’re both frustrated. exhausted. 

But right now these children are happy, we are fed, we have a home, and all is well. well enough. 

We don’t need or want anyone’s pity, no saucer eyed proclemations of “you’re so brave”. We work impossibly hard for these little moments. We just want to enjoy them, to have the ability to rest now and then. We want to live. It shouldn’t be this hard. 

but it is.

Rest 

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Coping in the Meantime

Winter is a hard lean time for many chronically ill and disabled people, for many environmental, physical, and personal reasons. It’s no longer the depth of winter in this part of the sphere we call home but that doesn’t necessarily mean all of us are magically better. 

Boom. I wish. 

Season changes can be a difficult time for many of us as well for many different reasons. For some people rapid weather changes can impact their pain levels, cause loss of mobility, aggravate secondary or co-morbid conditions, or cause chronic illness flares when we are already in a weakened and depleted condition, adding days or weeks to our recuperation time. 

Even if enviromental changes don’t aggravate our conditions, our recuperation times are often painfully slow, we may be treading water in a limbo of slight relative improvement even by our own personal standards for much longer than we can really bear. Spending days or weeks feeling better, but knowing that sense of “better” is to delicate and new to have any practical function can be exceedingly frustrating. 

So here I am in the long weeks of feeling better…but not really better. Since this winter, when I caught a cold that kicked off a domino effect of asthma, pain, and chronic illness flares, I have been a ghost in my own home.   Borrowing against future spoons just to function at parental survival level, keeping my kids fully cared for while my partner was at work and only existing in a pain and brain fog stupor when he was home. 

so now things are a little better, my pains have faded a bit to tolerable dull moan, plus a constant full body “restless leg” irritability, as well as daily (rather than constant), sharp pains of joints not lining up right or generally not working quite as they should. My fatigue has faded from unable to function at all unless under duress to constantly exhausted, mildly foggy, and grumpy. I am so tired right this second, my shoulders feel resentful that they have to persist in being held higher than my feet. so tired. I am living in pea soup and I know it. I want out. 

This is overall a big improvement except the fact that most of my relatively freed resources are just enough for me to have more time and energy to think about my ever growing to do list. The pressure feels monumental to get everything I haven’t been able to do for months, done now. Spring cleaning, entertaining and enriching bored toddlers with cabin fever, homeschool, starting a business with very little in terms of network or resources, trying to make new revenue streams so we can maybe live under a little less pressure, careful budgeting of spoons so that I don’t lengthen my recuperation time out of obstinance, and internalized ableism always lurking behind my right ear with it’s insistent whisper of “not enough” always make this time of year extra frustrating for me. 

So here I am reminding myself, and you too if need be

That it is ok. 

If all we have to give right now is 20%, 20% is 100%,because that is all we’ve got right now. 

That there is never anything wrong with giving what we have to give. There is never anything shameful about not having more to give, *even* if we may have it to give at a later date or in a different environment. 

Today we can only offer what we have today

Let’s try and be a little easier on ourselves for not yet having future energy or ability in stock today. 

I know it is a process, I won’t be able to change my thinking immediately and that is ok as well, but I’m going to work on it. Learning to forgive myself for not being able to do the impossible is as important as learning to not hold the impossible against other people. 

Today is not Tomorrow, and that is ok. 

Repeat until we believe it. 

Otters and Other Mythical Creatures

I think about otters

no one forces an otter 

otters are just otters

otters just live

————-

I think about living a life with out the sweaty milk sacks 

now that’s poetry. 

milk sacks. spigots.

I’ve got a million euphemisms 

let’s just tone that gendered term down friend 

soften the blow a bit

they have given life though

nurtured life

power, grace, and magic irrefutable

I am thankful for this gift

even as I am being dragged kicking and screaming into your 50’s house wife fantasy.

*I Do Not Consent To This!*

I scream into the void 

but no one is listening 

or no one cares

*I do not consent to this body* I whisper

small.desperate. an eternity of tired

still

The entire world leans in

cheerful.helpful.

and offers me a cough drop and half of a flat soda.  

forever missing the point

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. 🙂