I’ve been trying to figure out how to write this blog post for about 3 1/2 years. At first I kept putting it off because I thought that one of these days I would come up with a solution to some of the problems I’ve been wrestling with and then I would finally know how to write this post. But at this point I’ve resigned myself to the fact that there’s never really going to be a solution. So I figured I might as well just write this and send it out into the world to see if it resonates with anyone else.
In January of 2017, a couple of weeks before Trump’s inauguration, I ended up in the hospital for 3 days and, honestly, my life has been pretty chaotic since then (to be fair, it was pretty chaotic before then, too, but I love the symmetry of that image). The chaos in the outside world has mirrored the chaos in my own life. And every time I think I’ve finally found my footing and can take a breath, settle into a routine, let go of panic, the floor crumbles underneath me right on schedule.
Since that hospital stay I’ve had months long battles with my insurance company over name/gender changes and medication coverage, top surgery (a good thing, but still major surgery with a long recovery) and a year of intense post-surgery nerve pain afterwards (not such a good thing). I’ve had to navigate changing insurance companies after Blue Cross left California (when they sent me the letter announcing they were leaving, my brain completely blocked it out, I had no memory of receiving anything, which is the only time that’s ever happened to me in my life). I’ve had to deal with changing the name and gender on my driver’s license twice because they lost my paperwork, and I’ve had multiple issues with my car. I’ve gone through several jobs, at times working two jobs at once (which is challenging even when not dealing with chronic illness) and I’ve dropped out of two different study programs (one in Waldorf education and one in library and information technology). I’ve also had to take care of a cat with serious health issues ending in her sudden death last year. I am probably forgetting something.
The point is, I was already exhausted. And then the pandemic hit and I lost my job, the job that I had spent YEARS trying to get because it was a part time job that actually paid enough that I could barely qualify for an insurance subsidy. I lost that job with no explanation, in the middle of a pandemic, during record unemployment, at a time when working outside the home is particularly unsafe (especially for someone on immune suppressants and living with a diabetic). And I’m in a better position than most people. I live with my parents so I don’t have to worry about paying rent. I’m on unemployment. I am probably going to be fine. But I don’t know what to do with the fact that I spent YEARS working towards this goal only for it to go up in smoke through no fault of my own. I don’t know how to deal with the fact that I spent so much time and energy chasing stability only for everything to blow up so spectacularly in my face.
And those are just the many upheavals in my own life. Alongside that has been the never ending litany of disasters that is the Trump presidency. There are the myriad ways in which this administration has targeted trans people and the myriad ways they’ve tried to do away with the ACA and the protections that came with it, like making sure those of us with pre-existing conditions can even get health insurance. There have been the ever-increasing wildfires in California, worrying about friends and family losing their houses and their lives, worrying about my parents’ house and our own lives. The ever-growing threat of climate change. And those are only the things that affect me personally.
Back in that long ago January of 2017, before I ended up in the hospital, I had this naive idea that I would spend the next four years of this presidency DOING something to stop all these terrible things from happening, to stop climate change, to stop Trump, to stop them taking away the things I was so close to achieving (transition! cheaper health insurance!). But then I ended up in the hospital and there was always some emergency to navigate. I’ve felt like a hamster on an endless wheel spinning between trying to take care of my health/navigate the medical industry (its own part time job), trying to get a better job/more financial independence, trying to have a writing career, and trying to do some form of activism even if it’s just writing letters to representatives or signing petitions. None of it ever feels like it’s enough.
And the result is that no matter what I’m doing I always feel like I’m doing the wrong thing. If I’m trying to get a better job I feel like I should be writing, if I’m writing I feel like I should be volunteering, if I’m writing letters to representatives I feel like I should be doing something like yoga to manage my pain, if I’m doing yoga I feel like I should be job searching. On and on. Only it’s worse because whenever I’m doing one thing there’s at least three other options clamoring for my attention. It’s paralyzing and it makes it so that half the time I don’t do anything because I don’t even know what to prioritize.
In the past, well meaning friends have suggested that I just do a little bit of everything, but that approach always leaves me feeling stretched thin like I’m trying to juggle twenty balls in the air and dropping them all on my head. Others have stressed the importance of self care, but self care in a state of emergency often feels like a luxury. If you’re standing on the beach in front of an oncoming tidal wave you don’t stop to practice self care. You get the hell off of that beach.
Now with the pandemic in full swing I feel even more overwhelmed. Do I drop everything and focus on finding another job? What would that even look like in the age of COVID 19 when all the things I have experience in (education, libraries) feel incredibly unsafe? Do I try learning new skills or take whatever I can get? Do I focus even harder on taking care of my body in case I get sick? Do I take this opportunity to write more now that it isn’t safe to leave the house and hope that that eventually leads to some extra income? Do I try to volunteer for an organization that’s helping people through this disaster if I can find a safe way to help?
The truth is I have felt enormously guilty over the past few years that I’m not doing more to fight back against all the awful things happening in the world and at the same time I’ve felt trapped by my body and my lack of independence. It seems like an enormous privilege to have the support of my parents and a roof over my head, but I also don’t want to spend the rest of my life financially dependent on them. And mixed up with everything else is the fear that every time I put off writing I’m putting off any hope of my writing dreams coming true for something that may very well fall apart like my other jobs have. After all, writing, like any art, so often happens in the cracks of a person’s life. We have to make that time happen or it doesn’t happen at all. We have to prioritize it.
A part of me feels like if the world is falling apart I might as well just do whatever I want to do (since trying to be practical has worked out so well for me 😒). But another part of me thinks about the people who are dying because of this administration, because of racism, because of climate change, a tsunami that’s already bearing down on us, and thinks, “How can I possibly sit here in my house reading books and writing? What good does that do anyone?!” And yet another part of me worries that in order to be truly helpful I’d have to become something I’m not. I have friends who are lawyers and activists, for example, impressive people who actually accomplish things! But I don’t know how to do the things they do and I’m not sure I even want to. I want to be what I am, which is a creative person. I just don’t know how to be that and be of use in a world that feels like it’s falling apart.
Anyway, this is a long and messy post but these are some of the things I’ve been wrestling with for years. Do you have the same struggles, reader? How have you figured out how to prioritize in these chaotic times? If you’re also a creative person, how are you finding the time and energy to create? And do you struggle with guilt too? I’d like to think I’m not the only one going through this.
2 thoughts on “Around and Around and Around We Go”
I’m not struggling (yet) with a chronic illness (premature menopause due to what my doc suspects will eventually be Hashimoto’s, but for now my thyroid is functioning okay), but wow do I feel you on this.
I’ve spent the last several years working towards becoming a professional historian. I worked really hard in university, went to grad school, dug myself in 6 figures of student debt, aaaaaand it turns out academia isn’t my bag. I burnt out so hard that I’m just now starting to put the pieces back together again a year after finishing my grad program. I’ve gone back to the arts, since I found so much fulfillment and joy from being artistic. I’m drawing more, and trying to transition to illustration as my job (we’ll see how that goes – early days yet).
And I figured out in grad school that I’m probably autistic and maybe ADHD, so that’s been fun trying to find a proper diagnosis and figuring out what supports I need. Turns out being an adult and being AFAB make it really hard to get assessed.
And on top of all that, there’s the political situation and the pandemic and climate change.
I know I’m very fortunate in most respects – my office isn’t open to the public, but they’re still chugging along and I’m able to divide my time between working in the office and working from home. I’m still employed, I’m still insured, and my life is relatively stable.
But like you I’ve been feeling the guilt, the pressure to do all the things. If I spend time working on art, I feel like I’m being selfish. If I spend time on activism, I feel like it’s not enough or it’s time I could spend working on art. Time spent at my day job feels like a waste (my job is very low demand, which is what I wanted after grad school, but it’s begun to chafe). But looking for another job feels irresponsible since I want to transition to working as an illustrator. And my current insurance is what’s allowing me to finally take better care of myself, both medically and mentally. I feel pulled in a million directions at once all the time, and I don’t know how to make it stop or find what’s most important when it all feels vital.
I wanted 2020 to be the year I stopped ignoring my own self-care, and wow did I choose a banner year to start doing that. I think it helps to remember that self-care isn’t really the instagram-influencer-bubble-bath thing, but is instead taking your meds, getting good sleep, eating well, and so on. It’s not luxury for people with medical or mental health challenges. It’s necessity.
My therapist suggested something that I’ve been finding really helpful. It’s not perfect, but it helps. She said that you have to be able to take care of yourself at a basic level before you can help others. I likened it to putting on your own oxygen mask before helping others with theirs, and I’ve been trying (with mixed success) to remember that. It can help me focus on what I genuinely need to do to take care of myself, and how I can work within my current limitations to help support activism and other causes.
Thank you for writing this. While it sucks that there are other folks out there who are having similar problems, it helps to know I’m not alone.
Thanks for sharing your story! Spending all that time and money working to be a historian and then realizing you don’t want to be in academia sounds really hard. I fantasize a lot about going back to grad school to study folklore or Spanish, but I don’t really want to be a professor or write academic stuff so that always gives me pause. I wish there were programs where you could study something and then just make art about it instead of writing essays. Anyway, I’m glad that you are rediscovering art. That sounds awesome. It’s interesting that you mention autism because another AFAB friend of mine just got diagnosed after coming to the same conclusion on their own. It’s frustrating that there is such a difference in diagnosis depending on perceived gender. Anyway, I’m sorry you’re dealing with a lot of the same back and forth struggles but it’s a relief to know we’re not alone in that. I really like your reminder that self care isn’t just bubble baths, haha. I have a hard time internalizing that difference!