january: work
monthly theme: [endurance]
“Work” as it relates to “endurance” sounds daunting, possibly gaslighting, and yet again, incredibly exhausting… And certainly has the potential to be all of those things! I don’t think there’s any way around the fatigue and confusion (leading to irritability and anger) that we’re all feeling right now. Not so funny enough, however, the cadence of never-ending weariness coupled with rage reminds me of the process(es) that occurred when I was in the throes of my chronic illness(es).
According to my disabled and chronically ill friends on twitter dot com (and in real life), what we felt while coming to terms with the definition of “chronic,” is a lot like what we’ve been feeling as the phrase “live with the virus” floats around us as dangerously as Covid itself. I can’t even begin to explain the eugenics and lack of logic in such a position, but I’ll say one thing: Covid is a possibly disabling virus. Long Covid exists and will cause people to become “higher risk,” inevitably altering the way our generation ages and dies.
Thinking about that just leaves me full of grief. Utter despair. Like I’m sobbing in a doctor’s office for yet another time as I’m told “there’s nothing we can do to cure your symptoms…” It feels like spending a week recovering in bed while my friends go out, mourning any idea of “normal” I once had.
Managing symptoms when you have a chronic illness is a full time job. Tracking reaction to medications, food, and physical activity takes more effort than seems worthwhile. As if the chronic-fatigue wasn’t enough, it’s coupled with chronic-pain, insomnia, and anxiety because your nervous system is so dysregulated from the hyper-awareness and reality of having an unsafe body. Sound familiar yet?
We’ve all spent more mental energy tracking what activities we’ve done, who we’ve been in contact with, and if that tickle in our throats is just allergies or something more lethal. The anxiety of it all adds to the fatigue and sleep is no longer restful or restorative, but rather just a break from the Covid-calculations. This is the longest some of us have been inconvenienced by our bodies and the health care system. But disabled folks have been here before and there is wisdom, medicine, and righteous anger in their(/our) stories of survival.
I almost don’t know how I endured 26 years of chronic-pain and fatigue…I know it involved episodes of crying until I laughed hysterically because nothing made sense and I felt utterly damned. But I think the work it takes to indefinitely endure such ailments is to accept all the feelings that come up when navigating the world so tenuously. Or rather refusing to deny my grief. Refusing to deny any feelings that came up around taking so many prescriptions I’d gag and be nauseous all morning. Letting myself sit on the floor weeping because my body couldn’t perform the functions of a healthy teen or twenty-something.
Embracing the truth that there is no light at the end of the tunnel sounds defeatist, but it’s helpful when working to endure this never-ending bullshit. When you realize there is only a tiny, withering candle that you have to spend most of your energy to keep burning, there’s not much else to focus on except your emotions, your well-being, and the step directly in front of you.
“Chronic” means there’s no end, there is only endurance. I can’t focus on a “cure,” because there is none, I just have to make sure my candle doesn’t burn out. It eventually becomes easier as you mourn the idea of ever living “normally” (although there’s a lesson in ableism there) and accept that what’s happening can only be managed, not reversed. It’s not an easy task, but it is a necessary one to endure.
What I’m saying is that the work of endurance–the work that we’re all being called to as the government leaves us “living with the virus” –is to endure. This requires a lot of acceptance and serenity, never losing sight of your commitments and why you made them in the first place. The work of endurance is to also notice when it’s getting heavy, voice that fatigue, ask for help, commiserate with others to remind yourself that you’re not the only one in a dark tunnel with nothing but a candle.
We’re all carrying the burden of this pandemic together. Yes, there are plenty of disparities in who carries what and how, but these truths and these gaps in care/safety can be realities where we find new motivations and modalities in which to endure. It can become easier to carry on so cautiously if we can remember that we’re making these sacrifices for each other.
What do you value most? And are your actions reflecting these values?
Although I’m still chronically ill, I’m no longer immunocompromised, but this reverse-of-diagnosis hasn’t changed my actions in the middle of a pandemic… I know how terrifying it is to live under the assumption that if you catch this virus, it will kill you. I want to move through the world in a manner that lets people know I don’t want them to be killed.
I want everyone to avoid catching this virus. I want everyone to have enough food for their families. I don’t want people to risk catching Covid just to pay rent. I want production and work to slow way the fuck down so it’s easier for all of us to make decisions that most fully align with our values and desires of communal care and patience. I want the government to use the resources that it has to protect everyone in the country and solve obvious issues with our systems and structures.
Much of these desires are out of our everyday control. It’s not easy to feel that helplessness, overwhelm, or fear. But there is some magic in accessing those emotions, recognizing their power & legitimacy, and moving through and with them. I’m still personally working to find a healthy way to integrate my intense rage, but I have found the reality of my emotions comforting. To endure for 2 years in this soul-crushing pandemic and to still have deep emotional reactions can be a gift.
My empathy has endured. My care endures. My imagination is enduring.
The pandemic and the lack of response keeps going, but so do I.
