the stop doing list
Things I stopped doing after chronic illness and chronic pain turned my life inside out
Image Description: an opened red box with a dozen white chocolate covered strawberries inside.
I stopped going out. I stopped making many plans, because canceling became too awkward and tedious in the delicate management of everyone’s expectations and wants and unwillingness to believe what they cannot see, unless the source is divine like a virgin birth or creation of the universe. I stopped returning calls and texts, because I did not know how to answer the same questions in new ways. I stopped being able to succeed in my work life, as my body and brain gave out under the strain of pretense placed over top pain. I stopped making things the way I once had, when creative visions went from first fleeting breath to fully winged creatures existing outside of only my own imagination. There was so much loss in this. My world became so much smaller. It was also the first time I ever stopped. And in a culture that exists by selling itself to the highest bidder, stopping is one way of staying in reality and staying with myself. There was, and is, something very affirming in this. I still live in capitalism. But I am no longer for sale.
Valuing my own desirability. There was a time, from youth or socialization around gender and sexuality and what I was told mattered, where being desired was an incredibly high currency, a kind of high that would be as fulfilling as connection itself, as if there was a game being played and someone desiring you meant you earned a point. No one would ever speak of it this way, of course. But this was the undercurrent, even when we called it love or lust or dating or whatever happens when walking into a room and seeing who sees you. And then it changed. What I want has become more important than being wanted. And as a chronically ill person who can’t have many of the things I want, I am still learning all the things I do still want. All that is possible. This is a revelation.
Needing other people to do things my way, as if it is the best way. If the things are about me, then yes, I still want them to be done my way, which is usually quite particular, because there are reasons. And, if they are not about me. If they are you, your own life, your own body, your own health, your own experiences, your own needs. Then have at it. You do you. Whatever part of me that had the energy for convincing people for the sake of it has long since left me. What a remarkable side effect.
Chronic pain and chronic illness shattered any lingering pathologizing I may have clung to as a way of coping. Now I know inside and out that I feel this way and experience what I experience because of capitalism. Period. Not that my disabilities would still not be disabling outside of capitalism or that I would not still experience very real physical pain. They would and I would. But they would not create pathology, as it is defined today. The vast majority of what is the DSM 5 exists because of capitalism and our need to work in order to exist. What ends up being required to make that happen made me maladaptive, but I won’t pathologize it. Because the sickness is capitalism, not how we try to stay alive inside of it.
Connected to this, I stopped assuming that the issue is simply that we don’t value rest or understand the importance of rest because of capitalism. I stopped assuming simplicity to begin with. I am unable to rest most of the time. Even when in bed. Even when “doing nothing.” Even when “unproductive.” Anything that would actually be restful usually requires so much preparation and work to make happen that it is no longer restful for me, given the physical realities of my body. That is entirely different than not valuing rest or not understanding we need to rest or are deserving of rest.
So I stopped trying to rest as a means of getting better or repairing anything or resisting systems. Now I just go for whatever feels good, whenever I can. Nothing more. Nothing less. It’s really beautiful to me, even when it is complicated with also feeling shitty. I eat half a dozen gorgeous white chocolate dipped strawberries for dinner, and each one is an infusion of what feels good in my mouth, like I had never understood what a strawberry was before, or what dinner in bed was before, and both were exquisite inventions. I let my hands and brain find a pattern of puzzle piece after puzzle piece until the picture happens in front of me, and somewhere in the space of this I am sorted too. I lie on the bed in my underwear and a t-shirt, the sheets and pillows messy but just right, and I let the world outside the window be a conversation and it feels good to me to be alone with something that is also bigger than me, a world that moves forward and around me.
Thinking medicine will save me. Thinking alternative medicine will save me. Thinking a new treatment will save me. Thinking a new alternative treatment will save me. Thinking therapy will save me. Thinking a new alternative therapy will save. Thinking saving is possible or where I want to spend my very limited energy.
Dismissing treatments, medications, supports, therapies for what they offer in pain relief and care and management, just because they don’t offer salvation. Just because I stopped looking for a cure and can critique the medical industrial complex with its insistence on cure as the only means of care, does not mean I don’t look to alleviate suffering. I have stopped conflating the two.
I stopped trying to situate myself in rooms and world that don’t want me, didn’t invite me, or where I am the only one of my kind and I have to represent and end up exhausted and resentful. So maybe another way of saying this is, I stopped having relationships which only reinforced my own internalized ableism.
Instead, I am learning that there are those of useless ones who are here and love one another. Instead, I go over to Suzanne’s, with my partner, and meet her partner, and the four of us spend all afternoon together laughing and talking and eating and having the very best time because here there is space to be sick and queer and neurodivergent and in love. Here, care exists not as a commodity but as a way of being. Here, everything is easy. Here, stopping is understood.I stopped, or at least notably lessened, my arrogance. I don’t have much room to talk these days. Don’t claim titles or expertise or authority. I am both far more irritable, and far more forgiving.
Masking. And also, demonizing masking. Unmasking is not the end all be all. After decades of masking, I don’t know who I am outside of everything I learned to survive in this world that told me I was not okay. And also, no, it is not always safe for me to unmask and it is not always what feels best. And, I stopped masking to make others feel better or more comfortable or to try and pretend that I am the same or that it is possible to conform. It is not. There is, after time and years and years of this now, much less strife and something closer to an appreciation for the absurd.
Having the same conversations over and over again, thinking people would or will understand. That if they could just spend a day in my shoes living with the pain I am in, that their perspective would shift, that they would really see me and so I would feel different or less lonely somehow, that there would be lightbulb moments of aha where they would say now I get it and I’m so sorry for what you experience all the time. I don’t. They don’t. Now, I turn my attention to care, and let others figure shit out for themselves. Or not.
Monetizing support and care. I know most of us have to try to earn a living, a horrible turn of phrase. I know that being a therapist or a care provider that has a price tag to it is one of doing that, and that I myself pay care providers in different ways. And, for me, chronic illness and pain changed this for me. I no longer want to or am willing to monetize trauma and suffering and make money from it. I want care that happens when we share our resources and wisdom and show up as we are, and not when we claim we are experts with the need to pay our bills. So I stopped, and what I found in the intimacy and love in real camaraderie is the very thing money can’t buy.
I stopped waiting. Which is very odd given the amount of my life that I now wait. Wait for doctor’s appointments. Wait for test results. Wait for nothing exactly. Wait as a sort of sustained state of nothing getting better. Which is the very reason I stopped waiting. If it is not, then what? So I stopped waiting. I let the world end. And let the day start again. Again and again and again and again.
Wow I relate to all of this so much! I also don't care if I'm masking or unmasking, my body knows what to do in the moment to protect myself. I also have a hard time monetizing care, and I struggle with wanting to make money from yoga because of how appropriated it is. I relate to more on your list but I don't want to take up too much space here. Thank you for writing this, I really connected with it!
♥️