Thank you. I could have written every word you wrote! It’s been almost 5 years I’ve become a “new” person to myself and I deeply mourn the old me…so energetic, capable, athletic…I could go on and on about what been lost. I can’t believe the amount of money I’ve spent to just get level with each infection. I’m a private hairdresser and even with my doors wide open (even in winter) and air purifiers and masks….i still get covid and am trying to find a new way to make money that doesn’t involve the constant hours long contact with the general public. It’s so rare to find another guy that has been so affected by Covid and therefore lonely in many ways. Heck…i do get solace with spaces like this and people like you…thanks to my friend and tea mentor, Sooze for sending me your way! May we find our way through these times and navigate our changed bodies with as much Grace as possible. Peace.
Oh wow, thanks for much for your comment and kind words! I’m glad Sooz sent you my way…though I’m sorry you can relate to so much of this. Sending lots of good thoughts and appreciate you taking the time to say hi!
As someone who's is immune compromised from an illness that is also multi system and mirrors covid in many ways (chronic lyme), it has always utterly baffled me how we have so normalized being severely ill from something we know alot about preventing via masks/air filtration/access to basics healthcare supports and needs etc. We've been hyper cautious since early on bc I'm so high risk and there's almost limited info on how covid and lyme and co infections could interact besides it making things worse. Given how much we know about how covid damages the immune system, it's so infuriating to me to see people be so casual about getting an illness w serious long term effects regardless if they realize it, and be so cavalier about risking other people's health without their consent. How covid isn't seen as a consent issue even in more progress communities is so upsetting. Thank you for writing this.
Thanks for your kind words and sharing your sorry. I’m sorry you know these frustrations and challenges as well. I often think about how much I used to hear people bang on about consent and body autonomy but rarely hear that anymore. And I wonder if it’s a subconscious movement away from framings that would cause more reflection and recognition of these broader dynamics people don’t want to consider.
Every thought you shared, everything you experienced, every emotion you felt, ALL OF IT resonates so deeply it made me wonder if we’re psychic twins (but i’m much older & not as eloquent) - i sit here anticipating March 29th, the day I woke up sick with Covid which I thought (& hoped because yes I knew Covid was rampant) was a sinus infection & never imagined that 5 years later I would have lost my life as I’d known it, my body as I’d lived in it, my mind as I’d thought in it, my emotions as I’d felt & processed them, my job as a flight attendant that I’d adored, the ability to look at a screen like the one I’m typing on or any other kind of screen without burning incapacitating facial pain from trigeminal neuralgia (wtf is that, right?), being the go go bunny with work, play, concerts, trips, as much energy as I needed to do as much as I wanted, without running out of spoons (wtf, spoons are what you eat with) after only doing ONE FUCKING THING, my best friend who shot himself at the age of 38 who got covid a week before I did & wrote in his suicide note “i just cant take the pain anymore” - the LOSS is incalculable tragic suffocating & thats the longest run on sentence i’ve ever written. I just ran out of steam typing it. I live alone, which is a blessing & a curse, I just turned 70, which is also a blessing & a curse, & i cant wrap my mind around how i can feel so isolated & alone (even with some diehard BFF’s who have never deserted me) & then accept that it will hurt to hop on Substack to read & discover SO MANY PEOPLE LIKE ME. I feel guilty for relief that I’m not the only one, marooned in some alien existence that just appeared out of nowhere with no warning - but there WAS warning & thank you thank you thank you Steph for continuing to sound the warning by just being transparent & fragile & strong & HONEST. We’re on a shipwreck but you & all who replied to what you wrote are not “the only one going thru this”. I love roller coasters at amusement parks. I hate the roller coaster of Long Covid. And I love all of you in a way I never loved before that I’m still trying to figure out & I need to say I’m so sorry & a million thank yous for sharing it.. ..i feel so sappy & corny, i can only speak for me, but you are literally saving my life.
Thanks for all your kind words and for sharing your story. Once again, I’m sorry you can relate and for all the pain and chaos you’ve experienced. I don’t think it’s sappy or corny to express how much it means to find people who you really understand and connect with, and who really understand you. I think it’s beautiful and we need so much more of that these days.
Yep. 2019, 2022, 2024. Our BrainBody is disintegrating. As are our personal relationships with “family”. We meant to include our Transgender human self awakening and the rejection we have experienced from family in the essay. We forgot. We are wrapped up in Autistic Trauma; discovered at 48; Transgenderness known since 1995. Ignored until age 51. Last Halloween. We want to revel in ourselves. We are FREE. No. Not free. Wings clipped. Talons filed because IF WE speak out, we are WRONG.
Harrowing and entirely resonant, Steph. Even as we are being actively forgotten, your words remind us that at the very least, WE don’t have to forget what it’s been like for us.
Thank you, Amy. I often think of the quote from Zora Neale Hurston: “If you are silent about your pain, they’ll kill you and say you enjoyed it.” Owning and speaking our stories and pain is something no one can take from us. Also, being able to express our experiences and emotions has important and valuable emotional and physical health impacts.
Thank you so much for making this space. I’ve been sitting here crying into all the grief that has been weighing on me so heavily. There is something about death anniversaries. I think that in all the crying I’ve done, somehow I still have not cried enough. The grief is beyond words. Yet some of them are here in what you write and I am grateful for that. I don’t want to become bitter. When I look at photos from our lives in the before time I feel shock all over again. I don’t know what to do with it all. The wound can never heal, it keeps getting reopened over and over. I keep losing. I still remember listening to an interview of a virologist from Mt Sinai talking about the creation of the first vaccine “the worst thing that could happen right now would be for people to try and go back to normal.”
Oh boy, I feel this so much. This grief is so much, and so complicated, and just keeps coming and changing. And I don’t think most of us have had the emotional space to actually process a lot of it because of how much time we’ve spent/still spend in survival mode….and because (at least for me) it’s hard to grieve a loss you simultaneously hope will not be lost forever? There’s a lot of complexity and more flavors to this grief than just sadness, anger, and the other supposed “stages”. I keep discovering still untapped wells that continue to surprise me when feelings start leaking out suddenly, and there’s been a lot of that this week with the anniversary. Sending you lots of support and strength and hope you can be gentle with yourself as you continue to navigate this.
I found Alice Wongs memoir a balm for my mental health ans affirming of my disabled anger. while written preventing covid, it highlights her exp as an Asian american disabled woman and all the work she's done to make disabled stories visible. She's super high risk for covid and she can't even mask due to requiring oxygen regularly and she touches on this as she published her book in 2020 and wouldn't even see her book physically in a bookstore (actually not sure she's been able to unless they did concrete covid precautions for an event). Her book catapulted my understanding of disability justice and the larger frameworks shaping it. Highly recommend. Also like it's defiant and hilarious and her voice is epic. She's super badass.
Thank you so much for your kind words. God yes, the hope that it will not last forever. I just restacked a podcast interviewing Francis Weller about grief and ritual. In my isolated and survival state of life I forgot how important ritual is. If there was community, ritual would be happening even amidst the devastation. How can we create circles for the different flavors of grieving and survivorship? I volunteer.
That’s a really excellent question and one I’ve been pondering for awhile. I think there is such a need for this, but haven’t sorted it out yet. I agree about the value of ritual and feel how the disruption of that is impacting folks.
I've been wearing a mask everywhere inside, except for my dentist because he has good air filtering and because I've had tooth pain and I wanted that gone. When I eat out, I eat outside. I've been so lucky not to get COVID, but I also know that could change at any minute. I hate that common kindness has been sneered at and dismissed. I'll keep wearing a mask and interacting with my friends online. I'm lucky that I'm used to that--I've been a hermit for a while now. It still all hurts. I just want people to be kind but they don't want to be. Anyway, thank you for this. Thank you so much. I will keep choosing to be kind and to take care of myself. It's the right thing to do.
I am in the same boat, the long covid boat, and reading this gave me so many feelings! I, too, miss regular life. I have to say that your writing this post is such an inspiration to me. Losing my independence and relying on others is hard for me, but I'm doing the best I can with it.
I was thinking of writing a piece about my last 5 years. Your perspective has got me thinking and remembering! Now I think I *need to write it.
Stay strong. Hopefully one day we can all look back, from a better place.
I’m really touched. Being on Substack has inspired and encouraged me to write more, so I’m heartened to have that kind of influence for you, too. Sending you strength, and spoons for you to tell your story!
This comes closest to the experiences my wife and I have had. I have lupus and we’ve both masked and done all other preventive measures for the last five years. We both left our teaching jobs — it did not feel safe to be surrounded by unmasked students in close quarters — and experienced the gradual pull away of friends, colleagues, etc. The financial toll, the cost of anxiety/stress/fear, the physical symptoms…all add up. But the inability of the world to reckon with the science, and the disinterest in doing better is the hardest to take, especially given the likelihood of a Next Time. Thank you for writing this.
I am immunocompromised from chronic lyme plus have several immune diseases so I really feel this having been hyper cautious from the beginning. It's so frustrating and painful to lose all these folks who promised they were right there with us!
I cried reading this. I relate to so, so much of it. I’m 8 weeks out from my 2nd COVID infection and it’s triggered all of my Long COVID symptoms, the fatigue, brain fog, and neuro symptoms being the worst (I was back to about 80% of my baseline three years out from my initial infection). I hate the not knowing: will I get back to where I was? How much worse will things get each time I’m reinfected? And the grief at all the things I’ve lost / are different now. I appreciate the time and energy you put into sharing these words with us. Please know it means a lot 💗
Orgs like Sins Invalid have been doing alot of work reminding people that covid is a disability justice issues and pushing for covid safety. I always recommend them as a starting place to read and remember that as forgotten as we feel, there's many who see and hear us and working for mutual care. Plus always helps my mental health to find folks also committed to the same values.
Thanks for your kind words, and I’m so sorry to hear about the reinfection. The grief and uncertainty is so much. Sending lots of support and strength your way.
Sending you support today. It is a very hard day, but an important one. I miss all of the same things, too. I have the exact same feelings you do about missing my old life, and remembering what things were like before and then realizing I didn’t know then what I know now, that in 2019 and early 2020 that would be the last time I would be able to see those people. Throw that party. Run up the stairs. Go grocery shopping. Live my life not in a wheelchair. It’s very painful. I have to hold out hope for us and people like us. Hang in there with me.
Thanks for your kind words, and I’m sorry you know these feelings and struggles as well. I’m hanging in there with you, riding the waves of all the feelings in the process. Some days are easier than others.
Thank you. I could have written every word you wrote! It’s been almost 5 years I’ve become a “new” person to myself and I deeply mourn the old me…so energetic, capable, athletic…I could go on and on about what been lost. I can’t believe the amount of money I’ve spent to just get level with each infection. I’m a private hairdresser and even with my doors wide open (even in winter) and air purifiers and masks….i still get covid and am trying to find a new way to make money that doesn’t involve the constant hours long contact with the general public. It’s so rare to find another guy that has been so affected by Covid and therefore lonely in many ways. Heck…i do get solace with spaces like this and people like you…thanks to my friend and tea mentor, Sooze for sending me your way! May we find our way through these times and navigate our changed bodies with as much Grace as possible. Peace.
Oh wow, thanks for much for your comment and kind words! I’m glad Sooz sent you my way…though I’m sorry you can relate to so much of this. Sending lots of good thoughts and appreciate you taking the time to say hi!
Thank YOU ✌🏽
As someone who's is immune compromised from an illness that is also multi system and mirrors covid in many ways (chronic lyme), it has always utterly baffled me how we have so normalized being severely ill from something we know alot about preventing via masks/air filtration/access to basics healthcare supports and needs etc. We've been hyper cautious since early on bc I'm so high risk and there's almost limited info on how covid and lyme and co infections could interact besides it making things worse. Given how much we know about how covid damages the immune system, it's so infuriating to me to see people be so casual about getting an illness w serious long term effects regardless if they realize it, and be so cavalier about risking other people's health without their consent. How covid isn't seen as a consent issue even in more progress communities is so upsetting. Thank you for writing this.
Thanks for your kind words and sharing your sorry. I’m sorry you know these frustrations and challenges as well. I often think about how much I used to hear people bang on about consent and body autonomy but rarely hear that anymore. And I wonder if it’s a subconscious movement away from framings that would cause more reflection and recognition of these broader dynamics people don’t want to consider.
Every thought you shared, everything you experienced, every emotion you felt, ALL OF IT resonates so deeply it made me wonder if we’re psychic twins (but i’m much older & not as eloquent) - i sit here anticipating March 29th, the day I woke up sick with Covid which I thought (& hoped because yes I knew Covid was rampant) was a sinus infection & never imagined that 5 years later I would have lost my life as I’d known it, my body as I’d lived in it, my mind as I’d thought in it, my emotions as I’d felt & processed them, my job as a flight attendant that I’d adored, the ability to look at a screen like the one I’m typing on or any other kind of screen without burning incapacitating facial pain from trigeminal neuralgia (wtf is that, right?), being the go go bunny with work, play, concerts, trips, as much energy as I needed to do as much as I wanted, without running out of spoons (wtf, spoons are what you eat with) after only doing ONE FUCKING THING, my best friend who shot himself at the age of 38 who got covid a week before I did & wrote in his suicide note “i just cant take the pain anymore” - the LOSS is incalculable tragic suffocating & thats the longest run on sentence i’ve ever written. I just ran out of steam typing it. I live alone, which is a blessing & a curse, I just turned 70, which is also a blessing & a curse, & i cant wrap my mind around how i can feel so isolated & alone (even with some diehard BFF’s who have never deserted me) & then accept that it will hurt to hop on Substack to read & discover SO MANY PEOPLE LIKE ME. I feel guilty for relief that I’m not the only one, marooned in some alien existence that just appeared out of nowhere with no warning - but there WAS warning & thank you thank you thank you Steph for continuing to sound the warning by just being transparent & fragile & strong & HONEST. We’re on a shipwreck but you & all who replied to what you wrote are not “the only one going thru this”. I love roller coasters at amusement parks. I hate the roller coaster of Long Covid. And I love all of you in a way I never loved before that I’m still trying to figure out & I need to say I’m so sorry & a million thank yous for sharing it.. ..i feel so sappy & corny, i can only speak for me, but you are literally saving my life.
and so sorry for that run on sentence.
Thanks for all your kind words and for sharing your story. Once again, I’m sorry you can relate and for all the pain and chaos you’ve experienced. I don’t think it’s sappy or corny to express how much it means to find people who you really understand and connect with, and who really understand you. I think it’s beautiful and we need so much more of that these days.
Yep. 2019, 2022, 2024. Our BrainBody is disintegrating. As are our personal relationships with “family”. We meant to include our Transgender human self awakening and the rejection we have experienced from family in the essay. We forgot. We are wrapped up in Autistic Trauma; discovered at 48; Transgenderness known since 1995. Ignored until age 51. Last Halloween. We want to revel in ourselves. We are FREE. No. Not free. Wings clipped. Talons filed because IF WE speak out, we are WRONG.
https://substack.com/@satrump/note/c-101758594?r=f02hl&utm_medium=ios&utm_source=notes-share-action
Harrowing and entirely resonant, Steph. Even as we are being actively forgotten, your words remind us that at the very least, WE don’t have to forget what it’s been like for us.
Thank you, Amy. I often think of the quote from Zora Neale Hurston: “If you are silent about your pain, they’ll kill you and say you enjoyed it.” Owning and speaking our stories and pain is something no one can take from us. Also, being able to express our experiences and emotions has important and valuable emotional and physical health impacts.
Thank you so much for making this space. I’ve been sitting here crying into all the grief that has been weighing on me so heavily. There is something about death anniversaries. I think that in all the crying I’ve done, somehow I still have not cried enough. The grief is beyond words. Yet some of them are here in what you write and I am grateful for that. I don’t want to become bitter. When I look at photos from our lives in the before time I feel shock all over again. I don’t know what to do with it all. The wound can never heal, it keeps getting reopened over and over. I keep losing. I still remember listening to an interview of a virologist from Mt Sinai talking about the creation of the first vaccine “the worst thing that could happen right now would be for people to try and go back to normal.”
Oh boy, I feel this so much. This grief is so much, and so complicated, and just keeps coming and changing. And I don’t think most of us have had the emotional space to actually process a lot of it because of how much time we’ve spent/still spend in survival mode….and because (at least for me) it’s hard to grieve a loss you simultaneously hope will not be lost forever? There’s a lot of complexity and more flavors to this grief than just sadness, anger, and the other supposed “stages”. I keep discovering still untapped wells that continue to surprise me when feelings start leaking out suddenly, and there’s been a lot of that this week with the anniversary. Sending you lots of support and strength and hope you can be gentle with yourself as you continue to navigate this.
I found Alice Wongs memoir a balm for my mental health ans affirming of my disabled anger. while written preventing covid, it highlights her exp as an Asian american disabled woman and all the work she's done to make disabled stories visible. She's super high risk for covid and she can't even mask due to requiring oxygen regularly and she touches on this as she published her book in 2020 and wouldn't even see her book physically in a bookstore (actually not sure she's been able to unless they did concrete covid precautions for an event). Her book catapulted my understanding of disability justice and the larger frameworks shaping it. Highly recommend. Also like it's defiant and hilarious and her voice is epic. She's super badass.
Everything she writes is epic and powerful.
Thank you so much for your kind words. God yes, the hope that it will not last forever. I just restacked a podcast interviewing Francis Weller about grief and ritual. In my isolated and survival state of life I forgot how important ritual is. If there was community, ritual would be happening even amidst the devastation. How can we create circles for the different flavors of grieving and survivorship? I volunteer.
That’s a really excellent question and one I’ve been pondering for awhile. I think there is such a need for this, but haven’t sorted it out yet. I agree about the value of ritual and feel how the disruption of that is impacting folks.
I've been wearing a mask everywhere inside, except for my dentist because he has good air filtering and because I've had tooth pain and I wanted that gone. When I eat out, I eat outside. I've been so lucky not to get COVID, but I also know that could change at any minute. I hate that common kindness has been sneered at and dismissed. I'll keep wearing a mask and interacting with my friends online. I'm lucky that I'm used to that--I've been a hermit for a while now. It still all hurts. I just want people to be kind but they don't want to be. Anyway, thank you for this. Thank you so much. I will keep choosing to be kind and to take care of myself. It's the right thing to do.
Sending strength and support to you. The right things aren’t always easy, sometimes they’re actually the hardest to do.
I am in the same boat, the long covid boat, and reading this gave me so many feelings! I, too, miss regular life. I have to say that your writing this post is such an inspiration to me. Losing my independence and relying on others is hard for me, but I'm doing the best I can with it.
I was thinking of writing a piece about my last 5 years. Your perspective has got me thinking and remembering! Now I think I *need to write it.
Stay strong. Hopefully one day we can all look back, from a better place.
I’m really touched. Being on Substack has inspired and encouraged me to write more, so I’m heartened to have that kind of influence for you, too. Sending you strength, and spoons for you to tell your story!
Yes, sending you a full drawer of spoons! 🥄 🥄 🥄 🥄
This comes closest to the experiences my wife and I have had. I have lupus and we’ve both masked and done all other preventive measures for the last five years. We both left our teaching jobs — it did not feel safe to be surrounded by unmasked students in close quarters — and experienced the gradual pull away of friends, colleagues, etc. The financial toll, the cost of anxiety/stress/fear, the physical symptoms…all add up. But the inability of the world to reckon with the science, and the disinterest in doing better is the hardest to take, especially given the likelihood of a Next Time. Thank you for writing this.
I am immunocompromised from chronic lyme plus have several immune diseases so I really feel this having been hyper cautious from the beginning. It's so frustrating and painful to lose all these folks who promised they were right there with us!
I’m sorry you know these experiences as well. Sending you lots of strength and support.
I cried reading this. I relate to so, so much of it. I’m 8 weeks out from my 2nd COVID infection and it’s triggered all of my Long COVID symptoms, the fatigue, brain fog, and neuro symptoms being the worst (I was back to about 80% of my baseline three years out from my initial infection). I hate the not knowing: will I get back to where I was? How much worse will things get each time I’m reinfected? And the grief at all the things I’ve lost / are different now. I appreciate the time and energy you put into sharing these words with us. Please know it means a lot 💗
Orgs like Sins Invalid have been doing alot of work reminding people that covid is a disability justice issues and pushing for covid safety. I always recommend them as a starting place to read and remember that as forgotten as we feel, there's many who see and hear us and working for mutual care. Plus always helps my mental health to find folks also committed to the same values.
Thanks for your kind words, and I’m so sorry to hear about the reinfection. The grief and uncertainty is so much. Sending lots of support and strength your way.
The same to you, Steph. I’m rooting for you, for all of us.
Sending big hugs. Also that shirt is 🔥
Thank you! And yes! I have so many stickers, shirts, and patches from this artist. As soon as I saw this one I had to have it.
Sending you support today. It is a very hard day, but an important one. I miss all of the same things, too. I have the exact same feelings you do about missing my old life, and remembering what things were like before and then realizing I didn’t know then what I know now, that in 2019 and early 2020 that would be the last time I would be able to see those people. Throw that party. Run up the stairs. Go grocery shopping. Live my life not in a wheelchair. It’s very painful. I have to hold out hope for us and people like us. Hang in there with me.
Thanks for your kind words, and I’m sorry you know these feelings and struggles as well. I’m hanging in there with you, riding the waves of all the feelings in the process. Some days are easier than others.