Hoping Machine Needs a Boost
Some notes about KHMR and how to survive when survival feels exhausting
It has been so hard to write this year, and I've fallen into the trap of it's been too long and now I may never push through the inertia to get back to it. I think there are many reasons for this, but the primary one is that I'm experiencing a level of fatigue I haven't felt for several years and I'm no longer accustomed to pushing through. It's easier to just disengage my brain with other people's creations to numb myself from the betrayal of a body that has never been a friend, that has often been an enemy, but that I had recently come to an uneasy truce with. We were at peace for a brief moment in time and now we're not.
It's not just the fatigue. I have also been hit with increased joint pain on areas of my body that never had it before. I went to the doctor a few weeks ago and came so close to getting a rheumatology referral, only to be thwarted by a negative ANA. It's supposed to be positive in order for my insurance to pay for the rheumatologist, and it was when I had this test done six years ago, which is how I got the lupus diagnosis in the first place. In addition to this, I was told that the soonest appointment I could get would be next February, so even if insurance would pay, it would still take longer than I feel like I can wait.
None of this makes for good writing, but I say it only to say that life has been a struggle, both physically and mentally. Bandit, one of my cats, was diagnosed with mouth cancer at the beginning of March and I have not been coping well with that. He's only nine years old and I didn't think I was going to have to deal with end of life decisions so soon. Couple this with some interpersonal emotional difficulties and it's a recipe for stagnation. I'm still forcing myself to get out of bed every day, to feed myself and my cats and to do some basic housework, to go to therapy when I'm able, but not much beyond that. Not writing.
Because of this, I've made the decision to transition this to an entirely free newsletter. I was already leaning in that direction anyway since it's been more and more difficult to convince people to pay money for it, but especially now when I'm not sticking to the previously established once a week posting schedule. If it's free, I don't feel as bad about going a while without sending something out. I'm still going to offer the option to pay the $10 a month for it for people who just want to support me monetarily, and there's always the Ko-fi link if you don't want to commit to that, but it's not obligatory. It never was, but now it's even less so because all the words will be available for free. I may still do an occasional paid newsletter, but the bulk of it will be public now.
It has never been this much of a challenge to find hope. I still find my little ways to keep going, the moments of joy I'm able to wring from life and the fleeting rays of sunlight I'm able to use to sustain me. I still believe we have the capacity to fight and to win, and the capacity to care and provide for each other in ways that are revolutionary. But on a personal level, I am so, so tired, and because this newsletter has been centered around the concept of hope as a form of resistance, I feel like I don't have anything worthwhile to say here these days. I don't want to have to keep resisting. I don't want everything to feel like a battle. All I have to offer is survival, which is not nothing, but it's not exactly hope. Maybe hope that life will continue, hope that I haven't been beaten yet, hope that if I stay alive, eventually it will feel like thriving again. I don't know. Up to this point, it's felt like my purpose is to cup glimmering droplets of hope in my hands and hold them out to you, whoever is reading this, to say we're going to be okay because these things still exist. Whether or not the powers that be want them to, whether or not we believe they're enough, they still exist and we can build a new world with a new kind of society out of them.
I could rename this newsletter to something less hope-focused. That might be best. But I've grown attached to Keep Hoping Machine Running, both as a name and as a core tenet for how to approach my life. I'm going to do some thinking about this, about how to keep this newsletter going while also being realistic about the place I'm currently in and what that means for me. I hope you'll stick around to see what that looks like, and I hope you'll continue to find the writing worth reading. I want to be authentic above all else. I don't want to force myself to put things out that don't feel real or true. Right now, that means letting you in on the reality of chronic illness and circumstancial depression. Later, I would like it to mean something different and better. Hang in there with me and we'll get there.
As a parting gift for this installment, let me offer you some playlists. I've been trying to lean into the spring vibes, even though what that means where I live is rain and rain and, to top it off, a little more rain, with a few tornadoes just for spice. I wrote this newsletter while listening to a spring instrumentals playlist, and I also have my eye on this spring jazz one and this classical garden one. I've had this reading a book outside playlist saved for months now and I really enjoy it, and, on a different note, I've been surprisingly really into this 50s housewife bangers playlist for the past month or so. And my most recent favorite book is Alex, Approximately by Jenn Bennett, which I may write about in a more in-depth way eventually. Your mileage may vary on it, judging by the Goodreads reviews, but I was delighted all the way through.
More to come, probably. I want to keep writing, even when it's hard and even when I don't think the work I'm doing is particularly good or inspired. I miss it when I don't do it for a while. I hope you're all keeping on.