We are just coming off a very intense heat wave here in Australia, which was accompanied by a horrifying number of bushfires and destruction. Here in Victoria, many of the bushfires are still burning. The temperatures here at the Castle reached 45 Celsius, which was its own intensely scary thing. Thursday was the first extremely hot day, and I flared in the mid-afternoon, so badly that Rose had to wipe me down with ice water for about an hour before I stopped shaking, and then put me in a cool bath, which I stayed in for almost an hour and a half. (If you know me, you know this is VERY weird behavior for me because I generally refuse to get in bathtubs)
I had been staying in the main house since Monday evening, since it was getting to be too hot for me to be able to keep my camper cool enough to safely rest in. I’d already packed for myself for the week so that I wouldn’t need to go back out while the heat wave was here. After Thursday’s extreme heat, we decided that we needed to close off the big room that is the most difficult to keep cool, so on Friday morning I moved a lot of my things into the lounge and prepared to stay further in the house with everyone else during the swiftly approaching heat. I started to have another flare (a POTS flare this time, something different for funsies I guess), and Ash stayed with me while Rob and Rose finished closing up the great room and putting foil on the windows and hooking up the portable air conditioner that we moved from the great room.
this is also love: Ash is holding my hand while I am shaking and crying and embarrassed to be flaring again
I do not want to be sick. I do not want to be sick again. I do not want to be sinking into the furniture while it feels like gravity has increased inside my chest and is causing my heartbeat to hurt. I do not want to be crying as if I am helpless as a baby who cannot lift its own head yet. I do not want the damage that repeated flares are doing to my body. Ash is holding my hand, even though they don’t know how else to help me, but they are not leaving me alone in my fear and this is the thing I cling to.
this is also love: Rose is moving my computer and putting it all back together so that I can use it from the couch where I am resting
I am being gently and firmly and compassionately held in Rose’s heart-warmth. My computer–the CPU, the monitor, the power cord, the keyboard, the mouse–all are being handled with such care. Rose’s animism blooms outward in love for all things, including me, my computer, my favorite pillows, the blanket they gifted me for Yule so many years ago, the ice water fae uses to cool my skin when I am once again too hot. I am comforted by the care Rose shows me. I am buoyed up by the insistent love that Rose gives me.
this is also love: Rob is sleep-deprived and under so much stress and is hooking up the air conditioner and taping foil to the specific window pane that might let sunlight touch me
It is not that I am any more special than anyone else in our family. No, because I am exactly this special, and so are each of us. It is that when my beloved sees something that is harming one of us, and can act, fae will do as much as it is possible to do in those moments. As soon as Rob knows I have started flaring again, fae brings meds and puts them carefully, directly in my mouth, and then immediately starts moving the air conditioner into place and covering the windows. Actions speak louder than words: Rob’s words are some of the most beautiful things I can hope to hear, yet faer actions are even more beautiful to me.
I will not leave out my other partner; StarChild was in the house when I had a similar POTS flare a few weeks ago, and saw it happening before anyone else did, and did not leave me alone. I cannot express how lonely and scared I become in those moments when I am falling fast and nobody is around and I do not have the strength to call out for help. Sometimes, having someone there with me feels like the one thing standing between me and drifting away altogether. If someone is there, I can hang onto that energetically even if I cannot open my eyes or speak aloud.
When Rose had got me in the bath (well, I did get myself into the tub, but I definitely needed help getting there), Robert and his whole six-years-old self positioned himself on the bathroom floor with his phone and stayed there with me the whole time. He wouldn’t even leave the room to ask for a water refill, so I messaged the group chat to get it for him. He had his snacks and a few toys and was very protective of his Papa Nix while I was in there, my sweet boy.
my first post of the year was supposed to be a retrospective or a wrap-up or something; but it is a hot, hot summer here, and there are fascists shooting people in the face in the place I fled from
As the people of Gaza still starve and die and are being bombed and shot at and murdered again (STILL), another murderous criminal has bombed Venezuela and sanctioned every escalation of violence in the United States.
As trans people are being actively genocided in the place I fled from, the Stray Kids fandom is arguing about whether or not we should boycott the shows that are coming to the states and the movie that is also being shown in so-called “Israel,” and the only thing I want to scream is our public enjoyment of our fandoms is not–can NEVER be–more important than the safety of people under the boots and guns of a fascist police state.
So it’s been tricky to post a retrospective, you know? Because shit keeps happening, not just everyday gosh that’s annoying kind of shit, not the kind of shit you’d hope for right now; it’s genocide, it’s murder, it’s complicity, it’s climate change, it’s horrifying.
so. this is also love: sacrifice in the service of others.
Are you able to participate in a boycott, or sign a petition, or donate to a mutual aid fund? Then I think you should. I think it is your moral obligation. I think we are past the point of whether or not we feel like it, to be perfectly honest with you.
I am not asking disabled people to give up services or access to medications, groceries, food, or shelter. I am not asking anyone who is in danger of being scooped up and/or murdered by fascists to give up something that they need in order to survive. It is up to you to know yourself, and know what you can and cannot safely and reasonably do.
Love for others must include love for oneself. Harming yourself will do harm to us all.
We are all connected. Never forget that. Each person’s choices shape the reality we all live within, which I think is ABUNDANTLY clear right now.
I’m still a little too recently heat-flared to properly share some song lyrics with you, but I will try to give you two songs next time.
xox,
Nix
