There have been a few unposted-posts over the past few months that, in my hiding never made it here.
Here is the first one: this is a note I wrote to friends when I first really began to ask for help with building a sustainable and loving life. A lot of what I heard back ( I was surprised and tickled at the response I got) was that this was an important message for us in activist, oppressed communities to learn in order to practice taking care of each other, and to reaching out to get that support (unedited):
**swearing, ableism
Hiya, so most of you know that I’m a sicko, recently I got my “official” fibro diagnosis – whatever that means. It puts some medical validity to what I have been experiencing and self-advocating for two years but of course doesn’t change the truth of my body.
I know so many fucking fierce crip warriors and am pretty much the luckiest for that. But right now, I am on my couch where I have been all day. And I am weeping.
There are days when it feels like I can manage my ten million responsibilities and commitments, but more often than not I am just pushing myself too hard, setting myself up for a crash. I am feeling really vulnerable and aimless and without resources right now.
In lighthearted moments I can joke about becoming a member of the fibro club and laugh with my friends about crip life but it fucking sucks and there is no other way to put it.
For the past two weeks I have been fostering this amazing little dog named Adam. He was shot and left for dead at the side of the road, but was rescued and rehabbed and now is a spunky love monkey in a wheelchair. I felt so connected to the idea of fostering/adopting a crip dog for pretty obvious reasons and I have fallen in love with his guy. I know very deeply, down to my marrow what it is like not to be loved and I don’t wish that on anyone. I just wanted to love up these dogs that people thought were worthless and to convince them they are not. Aside from the realities of taking care of him, which turned out to be a bigger task than I was informed of, I hadn’t really anticipated how fucking triggering it would be to be out with him and have every single person who walked by frown and pout and say “awwww poor guy” and then proceed to ask really invasive questions about him, his history, health and other things that just weren’t their business. A few people have even made comments about how shitty it must be for me to have a dog like him. And every time, I feel it two-fold. Once for him, for how little people expect of him because of his disability. And I feel it for me, because they are the same invasive inquiries I get when I am out with my cane. Adam LOVES his wheelchair. Every now and then he goes over to it and licks it for a while, and whenever I am putting him in it, or even bring it into the room he loses his shit because it makes him so happy. Like my cane, his device makes it more possible for him to participate in an ableist world. But it still stings.
I feel aimless, because the dreams and fantasies I have had about my life are getting smaller and narrowing into “needs” instead of “wants”.
Everyday I am tired/sad/sore and sometimes that can be a hard combination to plan around.
I want to go to Iceland and walk all over the black rocks and mountains and drink vodka with bjork until 6am, I want D and I to go to Scotland and wander around the country looking for sheep to pet. I want to build my own house somewhere and fill it with cats, dogs, goats, bees, pigs, cows, children, lovers. How on earth does that happen when walking the 6 steps it takes to get into my apartment leaves me winded?
I work for a great mom who hires me to take her baby out for a few hours so that she can stay home to sew and nap. When I head out with the little guy I am always a little jealous that I can’t be home doing the same thing.
My loves are my writing my art and my people. It is very painful when my body and brain won’t allow me to do the simple things that make me happy.
So, how do you do it? How do you find ways to sustain yourself through sustainable effort without amping up the burnout?
Things I want to do:
finish my quilt
start another one
apply to grad school
go to grad school
write a book
write another book
perform and talk words and feelings with people
fuck with frequency
find my purpose
Things I do now:
pushpushpush
collapse
repeat.
I hear and appreciate it when loved ones tell me to slow down. I know that it would probably, well maybe, be good for me. But how can I slow down and keep up with the basics like food and shelter? Add in all of the other elements that make me who I am and it doesn’t leave a lot of room to just rest. In my dreams I wake up refreshed every morning; feed the cats; feed the dog(s); feed myself. Spend slow time outside walking my pup letting her sniff whatever she wants because we aren’t in a rush. Then I come home and spend the day writing/reading/sewing/napping/eating. I have a magic job that pays enough but doesn’t suck my soul or fragment by body. I have time and energy for community, in all the ways that can look like. With my magic job, I can get sick and not have to choose between taking care of myself and staying out of overdraft.
I’m not looking for a quick fix or a spell to make things fine. I have a lot of love in my life that I couldn’t live without. But in terms of practicality – I need help and the best way I know how to ask for it is to reach out.
I’ve made myself very vulnerable just now and ask for your compassion and respect around responding (if you choose to) and sharing any info with others.
Thanks for reading this far.
xo
coolname