I love the idea of calling this Vampire Time! Disability interrupts unjust structures, especially when we allow for accommodations. Cheers to finding what works and honoring our bodies!
I felt this whole essay so tenderly, thank you! I am 45 years into being disabled, 8 years into being diagnosed disabled, and four years into self-identifying as disabled, and it is still always such a struggle to just stop when I need to stop. It is so hard to recognize my need to stop and drift as a legitimate need and not a character defect, a demerit on my Lifetime Performance Review. But it is a need (of my 5 invisible disabilities, 4 are neurological! It's a need! I try to convince myself with math when my Productivity Cult indoctrination is having none of it), and as I heard someone say somewhere recently, it isn't liberation for all if it doesn't include you too. That is what I'm currently hanging onto when the rumination won't let me enjoy my scarce and precious me-time: I am included in the fight for liberation, and this little bubble of perfect nothingness is my talisman of hope against the machine.
Thank you so much for this comment! "it isn't liberation for all if it doesn't include you too" is so profound and it is something I would tell my children but not believe for myself. Cycle-breaking for me involves learning not to live under scarcity or endless sacrifice as a way to help others, but it is a slow learning process!
I'm really glad to read this. We need to stop the shame cycle on social media in justice spaces. We have to follow the lead of those who came before us and wise teachers like Hersey if we are to make change across generations, by floating in and out, never giving more than we can. Like a choir where there's so many voices, you don't notice at all when someone stops to take a breath. There's a prevailing notion that consumption and sharing = activism and that any time not being The Product social media sells is complicity. I personally find it a very fucked up mentality. The truth is, no amount of scrolling or posts about [insert every bad thing ever] will be enough to satisfy the shame cycle because the House (the social media company) always wins. Not that it's completely pointless (obviously) to post at all, but that we cannot measure our or anyone else's Goodness and Rightness by an algorithm getting fed every moment of our lives. I've struggled with all of this so much. The call of Enoughness is relentless when people are criticizing with the watchful eye of a purity culture mob to see if we measure up. Our brains and hearts and bodies weren't built for that, disabled or not, but adding disability into it, we definitely can't give in to that mentality. Rest is good.
Yes, I can see how I have been a part of shaming people on the internet myself -- coming out of an earnest and pure but also very triggered CPTSD heart. I now recognize people are going through so much and the internet has given us so many tools and also shoehorned us into moving the algorithm along. But I just don't see how justice movements can work or be sustainable if disability and personal autonomy isn't a part of the conversation!
Yes, exactly! I also have to remember it's emotion not logic. People (including me!) aren't always saying a fact but are just feeling feelings out loud, even if they misdirect their overwhelming anger and sadness at judging others instead because they can't actually speak directly to or influence the people causing the harm. I try to remember that before posting or replying but I am not perfect at it either.
I call this my indoor cat time! I felt guilty for so long because internal ableism is garbage in a backpack. But these days, I really think that revolution will be built on rest.
I felt this so hard, while crying in bed after doing nervous system reset breathwork. I have been teaching my body that is is OK to feel the uncomfortable feelings, and that has mostly been showing up through a sudden twist in my solar plexus and some tears, letting go of past grief. I feel like I’m making so much progress in myself (I also have CPTSD, and much of your thought-looping, ruminating, and wanting to fix things resonates), but I hate the fact that I can’t seem to translate this inner work into a career path. I also feel like I’ve stifled myself from my childhood daydreaming, free-writing self in the face of repetitive rejections, both real and perceived—experiences very common to neurodivergent and disabled folks. I can only really hope to stay out of freeze/disassociation enough to find a job that is not overly triggering to pay for insurance to continue healing, and then maybe turn my career towards healing others. Love the trauma cave idea, love the need for rest—for me it’s taking walks and daydreaming, and spending time in community with those who understand.
I think about this constantly. I am . . . sort of turning mine into a (not very lucrative) career and yet it’s also really triggering and exhausting to think / write / publish / promote my work . . . I am dreaming of a better world for ALL of us traumatized babes. And that includes one where we get our basic needs met in ways that don’t harm us or others.
I’m 10 years into disability, but it’s been more the ache of watching friends who are disabled/traumatized in their own ways not find stable ways to get their most basic needs met without it taking so much out of them that hurts. It makes me so angry at our systems that I get to take care of myself because I’m married to a spouse with a good income and (after 2.5 years) qualified for social security disability income, something not possible for many who are truly disabled and impacted. The fact that I get to take care of myself and recognize the immense privilege that is among the disabled community has been helping me to want to do it well for all of us, because it’s what we’d all wish for each other. Thanks for this opportunity to reflect!!
Vampire 🧛 Time! Love this name. My autistic daughter does this as well in the evening and it used to concern me, but I realized it’s just what she needs after school.
Quite a few parallels with my life. I, also, dive all in to whatever fascinates me and want to write about it and move things forward, but it’s never perfect or completely satisfying. It takes me forever to draft something that seems good enough.
I think my vampire time is the time I spend out in my garden pulling weeds. I won’t be shamed for taking time to care for my body anymore.
Oh your vampire time is exactly what I do! For me it’s a complete lifting of demands. I tell myself “you don’t have to feel better after this. You don’t have to be a better mom or writer or able to clean the house.” I just get to embody the collapsed state my nervous system is in, completely free of demands, and feel myself slowly return to my body. I conceive of it as, when I am in shutdown, it is not too hard to return to my body if I let my body shut down too.
And giving myself permission to want what I want, without figuring out the practicalities (which are a real hang up when you want a radically different world) has felt so so powerful over the past few years. Like it allows my body to be a spacious place to move around, instead of something I’m always being squeezed out of. Lately I’ve been wondering if this daydreaming/wanting is what prayer was meant to be.
Bless all of us and our vampire time and the creative, weird paths our bodies are carving toward safety!
I so relate to the line that you drank from the firehose of the internet! I did that for a few years as well trying to figure out what was going on with me. Now I cannot handle any more information!
I too cannot do all the things I want to do or think I should do. I just can't. I am finally letting myself do what feels right in my body. Daydreaming has been a difficult thing in the past for me since it would always turn into obsessive thinking but lately I have been doing pretty good at it. :) Just staring out the back windows to the trees and watching the birds and even though I look lazy to my family I just have to do nothing.
I have spent so much of my life hypervigilant and up in arms about the state of the world and trying to save it but I just can't do it anymore. I was really sick for a couple weeks recently and just lying in bed staring out the window or closing my eyes and doing nothing was all I could do. It was actually such a relief!
Very similarly I lie on the floor every night and one of my cats curls up on my belly. It's a really nice time and I look forward to it. I used to come home from work and kind of collapse on the floor/ have to lie down immediately but having scheduled time to do it has helped me (and my cat likes it a lot). Sometimes I put on music or my galaxy lamp.
When I was in my 30s, I used to do this - living alone. I'd lie on my couch for some period of time, just thinking about my day. Nowadays (in my 60s), thanks to all of the "initials" (cPTSD, CFS, fibro, AuDHD, OCD, etc.) I would fall asleep if I did that, no matter the time of day. I'm finding "mental space" time through morning pages (aka, The Artist's Way) and I'm thankful for that.
I love this. I’ve been forced into listening to my body more, when two extremely intensive weeks – a high-pressure time at work, then a lovely but exhausting trip to NYC with my partner, then turning round in arriving home and travelling to a family funeral – ended up in my being physically unable to get out of bed till lunchtime on Sunday. Maybe I need some Vampire Time???
I also realised today that I don’t get a prize for “toughing it out” while my therapist is on maternity leave, and have now arranged some cover sessions with another therapist she recommended for clients who needed support while she’s away. So easy to fall into these traps of trying to live up to some external image of what “robust”, “well-adjusted” adults are supposed to be able to “cope with”.
OMG I still think I am going to get some big prize for being the goodest little do-gooder who can tough it out. But nope. There is no prize coming. Just my body and my present reality.
I call this horizontal time! I need it everyday too. Sometimes I nap, sometimes I read, sometimes I scroll, sometimes I just close my eyes and daydream. Ive been doing it for 6 years and finally decided last year that it’s okay. And I’ve added my earplugs to the routine which makes it even better. I look forward to it and consider it part of my routine now.
Thanks for sharing all of this! I too think a lot about how I can save the world (when it feels like everything is burning) and frequently feel like I lack of purpose having stepped out of Christianity where everyone is supposed to be saving the world just by praying or evangelizing. But as a probably on the spectrum homeschooling, work from home mom to 5, I really can’t do much more than to live a quiet life where I try to be a good human for my people. That looks like a lot of down time when I could be “productive” so that I have what it takes to connect with my kids and do some work.
Absolutely need to incorporate some Vampire Time(tm) into my life! Between work, podcasts, meetings, music, social media, and wearing headphones for, like, 12 hours a day, sometimes it feels like my brain never actually gets to think thoughts. It can be hard to give all that room to our thoughts /process hard things but I love that you are using this to dream, tap into your creativity and EXPAND. Props to you for listening to your body and honoring its needs. Also, 5/22 was World Goth Day so this makes my little goth heart so happy :)
I love the idea of calling this Vampire Time! Disability interrupts unjust structures, especially when we allow for accommodations. Cheers to finding what works and honoring our bodies!
Wow, that’ll preach!
I felt this whole essay so tenderly, thank you! I am 45 years into being disabled, 8 years into being diagnosed disabled, and four years into self-identifying as disabled, and it is still always such a struggle to just stop when I need to stop. It is so hard to recognize my need to stop and drift as a legitimate need and not a character defect, a demerit on my Lifetime Performance Review. But it is a need (of my 5 invisible disabilities, 4 are neurological! It's a need! I try to convince myself with math when my Productivity Cult indoctrination is having none of it), and as I heard someone say somewhere recently, it isn't liberation for all if it doesn't include you too. That is what I'm currently hanging onto when the rumination won't let me enjoy my scarce and precious me-time: I am included in the fight for liberation, and this little bubble of perfect nothingness is my talisman of hope against the machine.
Thank you so much for this comment! "it isn't liberation for all if it doesn't include you too" is so profound and it is something I would tell my children but not believe for myself. Cycle-breaking for me involves learning not to live under scarcity or endless sacrifice as a way to help others, but it is a slow learning process!
I'm really glad to read this. We need to stop the shame cycle on social media in justice spaces. We have to follow the lead of those who came before us and wise teachers like Hersey if we are to make change across generations, by floating in and out, never giving more than we can. Like a choir where there's so many voices, you don't notice at all when someone stops to take a breath. There's a prevailing notion that consumption and sharing = activism and that any time not being The Product social media sells is complicity. I personally find it a very fucked up mentality. The truth is, no amount of scrolling or posts about [insert every bad thing ever] will be enough to satisfy the shame cycle because the House (the social media company) always wins. Not that it's completely pointless (obviously) to post at all, but that we cannot measure our or anyone else's Goodness and Rightness by an algorithm getting fed every moment of our lives. I've struggled with all of this so much. The call of Enoughness is relentless when people are criticizing with the watchful eye of a purity culture mob to see if we measure up. Our brains and hearts and bodies weren't built for that, disabled or not, but adding disability into it, we definitely can't give in to that mentality. Rest is good.
Yes, I can see how I have been a part of shaming people on the internet myself -- coming out of an earnest and pure but also very triggered CPTSD heart. I now recognize people are going through so much and the internet has given us so many tools and also shoehorned us into moving the algorithm along. But I just don't see how justice movements can work or be sustainable if disability and personal autonomy isn't a part of the conversation!
Yes, exactly! I also have to remember it's emotion not logic. People (including me!) aren't always saying a fact but are just feeling feelings out loud, even if they misdirect their overwhelming anger and sadness at judging others instead because they can't actually speak directly to or influence the people causing the harm. I try to remember that before posting or replying but I am not perfect at it either.
I call this my indoor cat time! I felt guilty for so long because internal ableism is garbage in a backpack. But these days, I really think that revolution will be built on rest.
Yes, I still have so much internalized ableism to unpack! I also love the idea of being an indoor cat :)
I still have so much internalized ableism to unpack! It’s totally garbage in a backpack!!!
I felt this so hard, while crying in bed after doing nervous system reset breathwork. I have been teaching my body that is is OK to feel the uncomfortable feelings, and that has mostly been showing up through a sudden twist in my solar plexus and some tears, letting go of past grief. I feel like I’m making so much progress in myself (I also have CPTSD, and much of your thought-looping, ruminating, and wanting to fix things resonates), but I hate the fact that I can’t seem to translate this inner work into a career path. I also feel like I’ve stifled myself from my childhood daydreaming, free-writing self in the face of repetitive rejections, both real and perceived—experiences very common to neurodivergent and disabled folks. I can only really hope to stay out of freeze/disassociation enough to find a job that is not overly triggering to pay for insurance to continue healing, and then maybe turn my career towards healing others. Love the trauma cave idea, love the need for rest—for me it’s taking walks and daydreaming, and spending time in community with those who understand.
I think about this constantly. I am . . . sort of turning mine into a (not very lucrative) career and yet it’s also really triggering and exhausting to think / write / publish / promote my work . . . I am dreaming of a better world for ALL of us traumatized babes. And that includes one where we get our basic needs met in ways that don’t harm us or others.
I’m 10 years into disability, but it’s been more the ache of watching friends who are disabled/traumatized in their own ways not find stable ways to get their most basic needs met without it taking so much out of them that hurts. It makes me so angry at our systems that I get to take care of myself because I’m married to a spouse with a good income and (after 2.5 years) qualified for social security disability income, something not possible for many who are truly disabled and impacted. The fact that I get to take care of myself and recognize the immense privilege that is among the disabled community has been helping me to want to do it well for all of us, because it’s what we’d all wish for each other. Thanks for this opportunity to reflect!!
Vampire 🧛 Time! Love this name. My autistic daughter does this as well in the evening and it used to concern me, but I realized it’s just what she needs after school.
Quite a few parallels with my life. I, also, dive all in to whatever fascinates me and want to write about it and move things forward, but it’s never perfect or completely satisfying. It takes me forever to draft something that seems good enough.
I think my vampire time is the time I spend out in my garden pulling weeds. I won’t be shamed for taking time to care for my body anymore.
So many people have told me they find pulling weeds to be incredibly restorative, and I love that!
I’ve noticed a few people here say it, too. It is interesting!
Oh your vampire time is exactly what I do! For me it’s a complete lifting of demands. I tell myself “you don’t have to feel better after this. You don’t have to be a better mom or writer or able to clean the house.” I just get to embody the collapsed state my nervous system is in, completely free of demands, and feel myself slowly return to my body. I conceive of it as, when I am in shutdown, it is not too hard to return to my body if I let my body shut down too.
And giving myself permission to want what I want, without figuring out the practicalities (which are a real hang up when you want a radically different world) has felt so so powerful over the past few years. Like it allows my body to be a spacious place to move around, instead of something I’m always being squeezed out of. Lately I’ve been wondering if this daydreaming/wanting is what prayer was meant to be.
Bless all of us and our vampire time and the creative, weird paths our bodies are carving toward safety!
I so relate to the line that you drank from the firehose of the internet! I did that for a few years as well trying to figure out what was going on with me. Now I cannot handle any more information!
I too cannot do all the things I want to do or think I should do. I just can't. I am finally letting myself do what feels right in my body. Daydreaming has been a difficult thing in the past for me since it would always turn into obsessive thinking but lately I have been doing pretty good at it. :) Just staring out the back windows to the trees and watching the birds and even though I look lazy to my family I just have to do nothing.
I have spent so much of my life hypervigilant and up in arms about the state of the world and trying to save it but I just can't do it anymore. I was really sick for a couple weeks recently and just lying in bed staring out the window or closing my eyes and doing nothing was all I could do. It was actually such a relief!
I like Possum time. :)
And maybe this is a natural cycle anyways . . . we have some years (or decades) of hypervigilence before entering our wintering season.
Very similarly I lie on the floor every night and one of my cats curls up on my belly. It's a really nice time and I look forward to it. I used to come home from work and kind of collapse on the floor/ have to lie down immediately but having scheduled time to do it has helped me (and my cat likes it a lot). Sometimes I put on music or my galaxy lamp.
cat time!
Love this!
When I was in my 30s, I used to do this - living alone. I'd lie on my couch for some period of time, just thinking about my day. Nowadays (in my 60s), thanks to all of the "initials" (cPTSD, CFS, fibro, AuDHD, OCD, etc.) I would fall asleep if I did that, no matter the time of day. I'm finding "mental space" time through morning pages (aka, The Artist's Way) and I'm thankful for that.
I love this. I’ve been forced into listening to my body more, when two extremely intensive weeks – a high-pressure time at work, then a lovely but exhausting trip to NYC with my partner, then turning round in arriving home and travelling to a family funeral – ended up in my being physically unable to get out of bed till lunchtime on Sunday. Maybe I need some Vampire Time???
I also realised today that I don’t get a prize for “toughing it out” while my therapist is on maternity leave, and have now arranged some cover sessions with another therapist she recommended for clients who needed support while she’s away. So easy to fall into these traps of trying to live up to some external image of what “robust”, “well-adjusted” adults are supposed to be able to “cope with”.
OMG I still think I am going to get some big prize for being the goodest little do-gooder who can tough it out. But nope. There is no prize coming. Just my body and my present reality.
I call this horizontal time! I need it everyday too. Sometimes I nap, sometimes I read, sometimes I scroll, sometimes I just close my eyes and daydream. Ive been doing it for 6 years and finally decided last year that it’s okay. And I’ve added my earplugs to the routine which makes it even better. I look forward to it and consider it part of my routine now.
I love that we all have names for this :)
I also call mine horizontal time. And I have to be on the floor or I will fall asleep.
Thanks for sharing all of this! I too think a lot about how I can save the world (when it feels like everything is burning) and frequently feel like I lack of purpose having stepped out of Christianity where everyone is supposed to be saving the world just by praying or evangelizing. But as a probably on the spectrum homeschooling, work from home mom to 5, I really can’t do much more than to live a quiet life where I try to be a good human for my people. That looks like a lot of down time when I could be “productive” so that I have what it takes to connect with my kids and do some work.
Absolutely need to incorporate some Vampire Time(tm) into my life! Between work, podcasts, meetings, music, social media, and wearing headphones for, like, 12 hours a day, sometimes it feels like my brain never actually gets to think thoughts. It can be hard to give all that room to our thoughts /process hard things but I love that you are using this to dream, tap into your creativity and EXPAND. Props to you for listening to your body and honoring its needs. Also, 5/22 was World Goth Day so this makes my little goth heart so happy :)
Ooooh I wasn't able to go through a goth phase as a teen so maybe this is me leaning into this now!
I call it reverse meditation lol
Rather than staying in the present I'm just quietly letting my mind wander. Highly recommend ear plugs or noise reducing ear muffs for this activity 🤌
yes I HAVE to have my fan going full blast or it doesn't work in my small house.